There is an ongoing failure in the field of medicine of patients and prescribers to properly diagnose or even recognize problems that arise secondary to chronic benzodiazepine prescription.
How does this come to be? Typically, a patient is prescribed a benzodiazepine, often on their first visit and frequently for a relatively minor issue. Because benzodiazepines can be fast-acting and are quite effective in the short term, the patient will often experience immediate relief of their symptoms, leading them to believe the drug is an effective long-term solution to their problem.
The prescriber then decides, against nearly all guidelines, that the benzodiazepine is a suitable treatment for the patient’s presenting complaint and prescribes it long-term, usually without informing the patient of the risks. Sometimes patients are provided the occasional addiction disclaimer: “These drugs can be addictive, but you don’t have an ‘addictive personality,’ so you should be safe.” This “addiction disclaimer,” while partially true, is incomplete and gives patients a false sense of security that, so long as they do not abuse the benzodiazepine prescription, there is no other cause for concern with the drug. If compliant patients later develop problems related to the drug, this initial misinformation impairs them from considering the benzodiazepine as a potential cause.
With continued use, sometimes within weeks, sometimes taking years, the patient’s health may decline, often with seemingly no explanation. The benzodiazepine is usually never considered the cause by the prescriber or any other specialist they see. Some patients consult numerous specialists during this time, chasing their tails in search of answers to their mysterious ills, and still do not receive a proper diagnosis. After numerous tests and sometimes the passing of many years, a few lucky patients discover, usually on their own, that the long-term benzodiazepine prescription was responsible for their problems all along. This common experience, and the medical profession’s inability to recognize it, can destroy a patient’s quality of life, often leading to disability and sometimes even death. In addition, it may wreak havoc on the patient’s financial stability, wastes the time and resources of medical providers, and is a drain on taxpayer and insurance company dollars.
Why Are Patients Experiencing These Symptoms?
There are three main reasons patients can experience such severe symptoms from taking benzodiazepines as prescribed: side effects, interdose withdrawal, and tolerance.
Side effects, or adverse effects, of the drug: The available literature around benzodiazepines leaves much to be desired; what we don’t know about benzodiazepines could fill a warehouse. Benzodiazepines can impact many systems in the body and disrupt neurotransmitter functions that play critical roles in healthy functioning. Because of this, the drugs carry a long list of known potential side effects, and many reported unlisted effects. The drugs have been grandfathered into medicine as “safe” without enough scrutiny, perhaps due to their low overdose risk when used alone. The fact is, however, that the benzodiazepine class of drugs is grossly understudied—there are no major studies on long-term use or outcomes in patients taking them for more than a few months—as well as the fact that it appears they have never been held to modern FDA standards.
Interdose withdrawal: Interdose withdrawal describes when withdrawal symptoms emerge between scheduled doses of a patient’s benzodiazepine. It is a red flag that physical dependence is developing or has developed. Interdose withdrawal can occur because the patient is not dosing frequently enough to their benzodiazepine’s half-life, such as taking a benzodiazepine solely for sleep at night. If the patient is on a short half-life drug and only dosing once daily, interdose withdrawal is likely. Of course, patients have individual variations in how they metabolize drugs; some may be rapid metabolizers, so interdose withdrawal should still be considered even if they are on a long half-life drug. BIC is contacted by many patients who express being forced to dose short half-life drugs like Xanax and Ativan around the clock, sometimes up to 6 or 8 times per day, in an attempt to stave off interdose withdrawal.
Tolerance, or tolerance withdrawal: When the receptors in the brain become adapted or accustomed to the action of the original dose of BZ, more of the drug is needed for the desired therapeutic effect (or the original effect at the original dose) to be achieved. This often develops with regular (long-term, past the 2-4 week recommended guideline for use) use and is known as tolerance.
So, if a patient develops tolerance to their benzodiazepine without increasing their dose, tolerance withdrawal symptoms will emerge. This state of tolerance then requires an increase in dose if symptoms are to be staved off. This correction is only a band-aid, however, as tolerance will occur again when the patient becomes acclimated to the new, higher dose.
All three of these issues illustrate how critical it is that a prescriber follows the recommended guidelines of short-term benzodiazepine prescription, limiting them to 2-4 weeks of use at most, and if detouring from the guidelines, informing the patient of the risks of doing so. Two out of the three causes—interdose and tolerance—are completely preventable by simply adhering to prescribing guidelines. Furthermore, if a patient does develop side effects from a benzodiazepine, it is much simpler and safer to withdraw a short-term patient who is not yet physically dependent than it is to attempt to withdraw a long-term one who is.
Medical Treatments and Misdiagnosis
The following list details some common disorders and symptoms associated with frequently presenting complaints of benzodiazepine-injured patients. There are also listed diseases/disorders which a benzodiazepine patient’s symptoms may present similarly to or mimic, causing them to be potentially included in and investigated for the differential diagnosis:
Autoimmune: Hashimoto’s Disease, Lupus, Lyme Disease, Rheumatoid arthritis
Cardiovascular: Hypertension or Hypotension, Postural Orthostatic Tachycardia Syndrome (POTS), Tachycardia
Dental: Dental Caries, Dry Mouth, Tooth Pain
Endocrine: Cushing’s Disease, Hypoglycemia, Hyperthyroidism, Hypothyroidism, Insulin Resistance
Gastrointestinal: Acid Reflux, Gastritis, Irritable Bowel Syndrome
Genetic: Ehlers-Danlos
Immunologic: Cancer, Hashimoto’s disease, Interstitial Cystitis, Mast Cell Activation Syndrome (MCAS), Recurrent infections
Neurologic: Amyotrophic lateral sclerosis (ALS), Confusion, Fibromyalgia, Migraines, Multiple Sclerosis, Muscle Weakness, Myalgic Encephalomyelitis (Chronic Fatigue Syndrome), Neuralgia, Neuropathy, Numbness, Stiff-Person Syndrome, Stroke, Tinnitus, Vertigo
Optical: Blurred Vision, Dry Eyes
Psychiatric: Bipolar Disorder, Borderline Personality Disorder, Conversion Disorder, Catatonia, Depression, Dementia, Dissociative Disorders, Generalized Anxiety Disorder, Insomnia, Mania, Obsessive Compulsive Disorder, Panic Disorder with or without Agoraphobia, Paranoia, Psychosis, PTSD, Self Harm, Somatoform Disorder
Reproductive: Erectile Dysfunction, Infertility, Irregular Menstruation, Polycystic Ovarian Syndrome
Were the benzodiazepine identified and then removed in a safe manner via slow taper, nearly all the mysterious symptoms and conditions would slowly resolve on their own.
Patients who develop symptoms of the above conditions directly from a benzodiazepine are frequently subjected to the expense and risk of unnecessary medical testing and treatment. Patients may also be misdiagnosed because prescribers fail to recognize the benzodiazepine’s role and, instead, treat the patient as if their problems are organic or psychiatric in nature. Were the benzodiazepine identified and then removed in a safer manner via slow taper, nearly all the mysterious symptoms and conditions would slowly resolve on their own.
Real Life Impact
One example where the above scenario plays out is with women and their menstrual cycles. Benzodiazepines have long been documented to cause menstrual irregularities in some patients, and, despite this, they are rarely considered in the differential diagnosis by a medical provider when a woman presents with irregular periods. Because of this, the patient may be put on hormones she does not need or, in more extreme cases, may be subjected to an unnecessary hysterectomy. Many women in the benzodiazepine support communities experiencing these menstrual irregularities report that tapering off of their benzodiazepine resulted in the resumption of normal menstruation.
To illustrate further with other common examples, patients presenting with chronic pain unknowingly caused by a benzodiazepine may be given steroid injections or prescribed a risky contraindicated opioid for pain management; a patient with insomnia may be prescribed additional benzodiazepines, Z-drugs, or other polypharmacy; a patient who is simply experiencing the side-effects of benzodiazepines may be misdiagnosed as bipolar and could be poly-drugged on further dependence-causing medications, while still experiencing no relief from their presenting symptoms.
Patients may be exposed to unneeded radiation, uncomfortable and invasive testing, and many medications they simply do not need.
Patients may be exposed to unneeded radiation, uncomfortable and invasive testing, and many medications they simply do not need. They might seek mental health or physical therapies or grow frustrated with conventional medicine and seek natural therapies. Most of these treatments will probably fail to solve their problem or provide the relief they seek, so they will continue to seek help. This might frustrate their growing care team, resulting in them being labeled as malingerers or being told the symptoms they are suffering are “all in your head.” If the patient isn’t too cognitively impaired and they can research their symptoms, or with the assistance of a loved one, they might discover the large online community of benzodiazepines sufferers that exists. Utilizing this resource, many patients discover on their own that the benzodiazepine is the culprit of their symptoms or unexplained illness.
How To Address Side Effects From Benzodiazepine Use?
If you have recognized yourself, a loved one, or a patient in this article, you probably wonder what to do next. When the issues with benzodiazepine side effects, tolerance, and/or interdose withdrawal have been identified, there are some options each patient can consider:
The first is switching to a longer half-life drug using a reputable, experience-based conversion table, such as The Ashton Manual, to address interdose withdrawal. Or, if a longer half-life benzodiazepine is not tolerable, one can try dosing their current benzodiazepine more frequently.
The second is increasing the dosage. The patient should always consult with their prescriber before increasing their dose, however, this conversation may be risky, as any sign of problems with benzodiazepines can be unnerving to a prescriber, resulting in them rapidly tapering the patient, refusing to prescribe further to the patient, or outsourcing the problem by sending them to detox. In being their best advocate, a patient should have a backup prescriber in mind with a set appointment before having this conversation should their prescriber respond in the above manner. A physically dependent, compliant patient being sent to detox should almost never happen. If patients can manage their prescription, they do not need to go to detox; there are exceptions, but this is the general rule.
A physically dependent, compliant patient being sent to detox should almost never happen.
The third option is tapering off the drug. The patient and prescriber must carefully decide upon this, as it can have dangerous implications. It is impossible to tell which patients will and will not have problems, so cautious, informed decisions ought to be made. The patient’s age, life expectancy, other health problems, support system, and living situation should be considered. If cessation is attempted, the lowest possible tapering rate, controlled by the patient and one not more than 5-10% every 2 to 4 weeks, should be used initially. For many patients, tapering off the drug is successful; they can taper off in a reasonable period, with minimal symptoms, feel much better, and move forward with their lives.
These patients develop benzodiazepine withdrawal syndrome and must endure a long, sometimes painful taper, often alone or without the help of their physician, in order to feel better.
Sadly, for a subset, somewhere between 10-50%, being free of the now problematic drug and moving forward quickly is impossible. These patients develop a benzodiazepine withdrawal syndrome and must endure a long, sometimes painful taper, often alone or without the help of their physician, to feel better. They may be forced to face not only their original underlying condition, which may have gotten worse or never resolved, but also benzodiazepine side effects, tolerance, and interdose symptoms, in addition to withdrawal and drug-damage symptoms. This horrendous process can completely disable the patient in their quest to discontinue these drugs, taking anywhere from many months to many years. Additionally, patients are often wrongly labeled as “addicts” or otherwise blamed, denied medical help, and must face both social stigma and societal ignorance when they attempt to explain their current limitations in the ability to friends and family.
Many patients at this point desire to consult with an expert on benzodiazepines. Unfortunately, there just aren’t many, if any. The leading experts on benzodiazepines, such as Professor Malcolm Lader, Professor Heather Ashton, and Dr. Raymond Armstrong, are all deceased. That said, a few doctors range from understanding to knowledgeable and willing to work with patients to help them with a successful, patient-led taper. If the patient cannot find an understanding or knowledgeable doctor, unfortunately, the burden will be on the patient, regardless of their current mental and physical state, to find a doctor willing to be educated about the problem.
In conclusion, more prescriber education is desperately needed regarding:
- The appropriate prescribing of benzodiazepines.
- Recognizing problems with prescribed benzodiazepines, including side effects, tolerance, and withdrawal.
- Safe taper protocols for benzodiazepines.
Hopefully, the nearly 60 years of outcries from injured patients and their continued calls for action will result in better education and comprehensive, long-term benzodiazepine research. Without education in the above three areas, medicine will remain in the dark regarding benzodiazepines. Patients will continue to suffer, while misdiagnosis and unnecessary treatments will persist. Valuable resources will continue to be wasted, and lives will continue to be lost.
Should patients who have been taking a benzodiazepine called Mystan for epilepsy for decades and who suffer from fibromyalgia and a host of other conditions see a neurologist or rheumatologist?
I have had it. I have constant pins and needles and pain in my private parts for five years I have been I
On and off benzos pain pills. I need help. What is going to stop this
Mary
I was a benzo a user , I abused them for 32 years. I took 5 mg of Klonopin to deal with life. I’ve been clean for four years. I deal with life on life’s terms now.
I’m currently suffering horrible interdose withdrawal after being on 3mg of xanax for over a decade. I refuse to up my does, so I suffer withdrawals. Sometimes I have to take an extra .5mg or a MG to feel “normal” I’m so scared! I’ve tried to ween and after all these years, it seems impossible. I’ve developed health problems, quality of life is horrible. I’ve looked into going to a medical detox. Any information or explanation, experiences would be greatly helpful! I need help! Thank you
Last year, my 68-year-old partner was diagnosed with Lou Gehrig’s disease also known as ALS. Speaking and swallowing were two of his challenges. His collapse was swift and catastrophic, and neither the riluzole nor the medical staff did much to aid him. He would not have survived if our primary care physician hadn’t given him attentive care and attention, as the hospital center didn’t provide any psychological support. His fall was abrupt and catastrophic. His hands and legs gave way to weakness in his arms. This year our family physician suggested using vine health centre com ALS/MND treatment, which my husband has been receiving for a few months now. I’m delighted to say that the treatment greatly reduced and reversed his symptoms of ALS, he no longer requires a feeding tube, sleeps soundly, works out frequently, and is now very active. In the hopes that it could be useful, I thought I would relate my husband’s tale; in the end, you have to do what suits you the best.
Any evidence that it “mimic” disease and not acually CAUSING it?
Cause ive gotten autoimmune symtoms from it, and i just saw a study few months back showing benzos basically stops the imune system from working. so all the viruses/parasites/fungi go insaine and start creating disease
So i wounder if benz really mimic disease or instead causing it. Did anyone really get MS/ALS/Autoimmune from benz wd and then it magically dissapered? that should happen with regular cases as well then, without benzos.
I’m in the same boat. I have immune system issues. Graves disease, before xanax. But, since being on xanax for a decade, I continually get sick with infections. Been sick for 3 weeks. Flu like symptoms. Went to the ER twice to be told all my blood work is normal. Ugh! This is the devils drug!
When I was in the state hospital I took Ativan several times a day. About 2 mg. Now that I am out of the hospital, I have been trying to get my psychiatrist to order Ativan for me, but she refuses to. I could never understand this though. After reading this info on my computer I am very glad she would not order it. This information clearly explains to me why she would not order it. I appreciate this article.
Is there any update on finding a doctor who understands what this article is saying?
This is so frustrating and sad..nobody can be held accountable for destroying lives …of which I’m one. 4 years off KLONOPIN and STILL SUFFERING DAILY.. career ruined, relationships ruined, financially f*c* ed, agoraphobia, absolutely horrific anxiety, vertigo…way TOO MANY more symptoms I experience DAILY to list 100% RUINED MY LIFE. These people knew what they were doing when prescribing these meds! They should be in jail and suffering the exact same way we do!! 😭😫🤯🤬🤬🤬
I have been on xanax since 2000
and before that prescribed valium as a teen and took it all through my adulthood until the switch was made to xanax. I have had many health problems i wished i had all the money spent on medical tests and Doctor visits with no help. I have mystery pains in my chest and horrible back issues but the one most horrible problem is reoccurring UTI which I just read can be caused by benzos.
Im
not sure how to get
off
this addicting drug as every
time I try something in my life stresses
me. the loss of both parents relationship problems every day stressors I run to to
xanax. problem is I have yet to find a Doctor who knows how to tell you how to taper or what to expect. I have heard Benzos are almost impossible to kick which scares me as I am 72 and have fallen several
times and feel like it will
just get worse. I know it doesnt help but I know exactly how
you feel, just wished there was a easier way to
get rid of these pills that can make rainy days sunny
but with a horrible
price.
This article and the comments section are the first place I have found knowledgeable people who understand this problem. I have been on Alprazolam since April 2016. I started on .25 (yes that’s a decimal before the 25) twice a day but didn’t feel any better so it was increased to three times daily. Four years later when the pandemic hit and my mom had a stroke and was put into a facility I was very stressed out and presumably had a tolerance to the dosage, so the doctor increased it to .50 three times a day where it remains to this day. However I do often feel tolerant to the latest dose after facing eviction and financial problems. The idiot nurse practitioners I’ve seen are uneducated people and terrible listeners who think they’re oh so clever as they try sizing me up (as the article says) as a street junky rather than someone who was coaxed into taking Xanax by an endocrinologist after I had bad anxiety and tachycardia as a side effect immediately upon taking levothyroxine for a hypothyroidism diagnosis that another endocrinologist told me I didn’t have. It’s a mess and a jigsaw puzzle and I need a doctor—-not a nurse—-not an Al anon group—but a doctor who is thoroughly knowledgeable about what this article says. Please share any of the very latest updates. I’m writing this in July 2024. Thanks.
I had been on also .5mg once a day for 35 yrs, on klonopan taken as prescribed (like most of us) Had no idea (like most of us) it was a benzo … 🫣
Thing is .5mg of your & my Benzo is equivalent to 10mg of Valium (diazepam) Our meds seem low but are actually VERY potent…
Xanax also has a short ‘1/2 life’ .. it leaves your system much quicker that other Benzos like klonopin & Valium have the longest 1/2 lives .. less chance of ‘interdose withdrawal’
Most med. professionals – inc. Drs. Have no idea how to taper people properly – also, stable, safe ….
My taper of klonopin has taken me 1.5 yrs. & I’m on my last 3 most.. so close to 2 yrs., thankfully I’ve been pretty good & able to live my life normally w/ a few annoyances. Many have HUGE challenges… learning how to deal with stress is key…. I’d really suggest becoming a member of our FB support group (Beating Benzos) it’s a positive & supportive group … David & Rosalind have created it & Rosalind has lived experience. They are truly wonderful.
Also, this site has page with Drs..from different regions who help w/ safe, slow tapers. I’m fortunate my Dr.,is giving me full reign to find & do the taper at my own pace … this site also (via Ashton method) suggests switching to klonopin or diazepam for taper b/c of longer 1/2 lives, but that would need to be done slow, assimilated switch – everyone’s different in what works.
I say we all can do this… important to do research, get a plan, work the plan & move forward in confidence.
All the best !! 😉
I’m so sorry. I don’t know if and what you’ve tried but I started protandim and life wave. It reversed so much oxidative stress. I hope you find relief.
I AGREE!
I feel your suffering anf pain as I have developed ALL of those symptoms! Please reach out. I would greatly appreciate talking to someone who understands
I am a victim of un-informed benzo dependency. I had went to my doctor in 2006 after my mom died and asked for something to sleep I was giving Xanax I took it for approximately 3 months and then stopped abruptly because I was not informed of the side effects or withdrawals of this drug. I immediately went back on them because I was having severe panic attacks and have been on them for 20 years now at one and a half milligrams per day. I have been diagnosed with fibromyalgia, and several other things and now thinking it’s all due to this drug and would like to learn more on tapering off of it. If anybody has any information for me I would love to hear it. Thank you so much
ALL due to the benzo 😭🤬
fibromyalgia is a known tolerance symptom of Benzos … if/when you decide to do a slow, safe, stable taper … and eventually get off .. the fibromyalgia IS reversible .. b/c. it’s actually symptoms of the Benzo… hard to believe but true.
Research this whole website .. there’s so much to learn
Benzos alter/change our GABA receptors & central nervous system – THAT’S what causes the ‘tolerance BIND symptoms’
It’s pretty well all reversible.
There’s a woman on my FB support group who was diagnosed with MS .. she doesn’t have MS :/
It’s the Benzos !!! They totally affect our muscles, nerves – everything.
Also anything head related … tinnitus, dry eyes, headaches, muscle pains .. you name it – BINGO ~ BENZO’s 🫣
I was given klonopin at 19 years old. Along with metoprolol a beta blocker. The dose for klonopin was 2mg 3×day. I have struggled with intense withdrawal and almost died several times. I am 53 now I’m so unhealthy from all the issues I have had from benzodiazapam and other meds. I do not leave the house my muscles are weak and I live with friends and lately I’m having excessive sweating and can barely walk around or stand up to long.I have gained so much weight and it’s caused diabetes hypertension, last withdrawal I went through was so bad. I suffered 6 months out of my head. No meds at all. I was put in jail and could not function. I didn’t know what I was doing. I had severe psychosis and many strange things. I didn’t know my name where I was ect. I was treated horrible and the experience was very tramaic. That was 3 years ago. I’m on klonopin 1and half MG a day. I suffer recently from head pain and numbness ears ringing,my balance is off. Excessive sweating and nauseated and I get scared of stroke. I had m.r.i. it was fine. I’m on 3 blood pressure pills also. I am not the person I used to be 3 years ago. I’m so messed up. Does anyone else suffer like this. Sometimes the tingling will overcome my body and then anxiety kicks in. I’m scared like I was years ago. But all these new symptoms bother me so bad. I can not live like this. I can barely function. Any advice? And do you get these symptoms?
Hi Kendra,
I am truly sorry that over the past 34 years, you were put on a cocktail of medications that have negatively impacted your life. Medication should improve your well-being to enjoy a better life, not take away from it.
Did they put you other medications at the same time as Klonopin and Metoprolol? What other medications were put on throughout these 34 years?
A psychotic episode in jail while withdrawing is inhumane. What did your doctors say caused this? I hope if it was the Klonopin and Metoprolol combination they immediately tapered you off or sent you to a facility to detox safely.
Much peace & love, Kendra.
BTW – most of us are victims of Drs.,not informing us of the dangers … and MAJORITY of us take ‘as prescribed’ … we aren’t addicted, we’re dependant ., but BOY are we (our entire body) literally hugely dependant!! Never go off abruptly or too fast of a taper …
Can you please send me something about being on long term benzos35 . and how it mimics bipolar. I’m being forced to rake bipolar meds. Thos is killing me mania started in mid 30″s at taper,
Thanks!!!
I was in tolerance withdrawal for years!! And didn’t know it. Had to stop working..in and out of psych wards..ENDED UP ON SIX MORE MEDS to treat my “diagnosis “. And all the while they were treating symptoms of benzo withdrawal!! 🤬🤬🤬 Try getting off ALL PSYCH MEDS. THEYRE ALL POISON!!
Hi Jodi,
Can you please share with me where else I can learn more about “tolerance withdrawal” and the how long these periods tend to last.
I am not having much luck finding other sources outside of this website who uses this terminology or cites a span of several years.
This is a problem that absolutely needs to be addressed for all of us who have taken benzodiazepines long term! 🤬😤
I had a 3 month “as-needed” prescription and wasn’t supposed to get dependant on Ativan. I quickly started having interdose withdrawal and even started to think I was having heart failure. About 3 weeks into taking Lorazepam I couldn’t even take the stairs or exercise anymore because of severe heart palpitations and shortness of breath. I realized after the 3rd month that the drug was the real problem.
I sadly didn’t have the resource (pills) or doctor to help me get off Ativan safely. I did a quick 10 days taper and I went through a very scary withdrawal. I am still suffering WD symptoms like POTS 9 months later, amongst many other symptoms like brain fog, disorientation, weakness, derealization, heart palpitations, panic disorder, low blood pressure spells, vertigo, incapacity to play sports, incapacity to go up more than a flight of stairs, headaches, feeling of overall sickness.
The symptoms come and go, but as soon as I get sick or tired they flair up, which makes me wonder if I have developped an autoimmune disease from Ativan prescription use.
For example, having a cold immediately flairs up my POTS symptoms and my heart goes up to 150 bpm just by standing on my feet. I’m in my early thirties and worked out/played sports my whole life. This is not normal.
I wish you all to be more lucky than I was and have a safe taper.
It’s bunch of bs that larazapam I was on 5 aday for six years never monitored never was told nothing it damaged my liver cost me thousands it broke the blood vessel’s in my neck from tremors docter thought it was funny ruined my sex life its not about the patient nomore it’s about pill money
So sorry to hear this..same here. The depersonalization and dissociation, pots, vertigo, anxiety, agoraphobia, can’t exercise ( worked out daily, my passion😢) and so many more daily symptoms. Been off benzo four years and STILL STRUGGLING DAILY 😭😡
I can identify with everything in this article. I guess I’m a dead man walking. I can’t believe this is really happening to me. I don’t want to die, but I can’t keep living this way. I lost my job and I pend 95% of my time in bed. Even showering is nearly impossible. A living hell, thanks to ativan and no help from medical professionals.
Don’t give up 😭 I know it’s inexplicably horrific torture!! 🙏🙏🙏🙏🙏🙏
Hey everyone,
Do you know if you can develop these kind of deseases with biomarkers in the blood ?
I was under bromazepam 18mg since 2021 and last july I changed in only one day for a strong dose of alprazolam.
Directly after that I began to feel burns in my face I lost weigh and progressively my symptoms was increased. Now I have all the symptoms of lupus.
I am under 18mg of bromazepam again and I have lamictal and trintellix also.
My blood analisis showed anti DNA antibodies.
So I am scared about developped a lupus because of this big swith of benzodiazepines.
If somebody knows more about that I will so gratefull.
Sorry for my English and I wish you all the best.
Should NEVER be switched over in ONE day … always need to do a bit of a tapered switch .. 🫣 Damn Drs., most really have no clue.
This IS the Benzo (as well as the quick switch) – SO common for people to be given MORE meds or updosed existing Benzo for what SEEMS like a new malady .. but is actually caused from the 1st EXISTING Benzo.
If you ever want to start tapering, check out THIS website – there’s Drs. Listed on here that are safe, taper friendly AND check out amazing FB support group for tapering called ‘Beating Benzos’ – safe, supportive & the group creator makes up personalized tapers for members who request. Often people take these tapers to their Dr. & show them what they want to do … some Drs. don’t agree .. others are good
It’s a crapshoot –
All the best.
You nailed it with this description Stephanie!
I was put on loazepam years ago. The dose was gradually increased over 20 years. Then my new doctor said I needed to wean off them. 3 mg. A day. She did a slow taper which took 1 year. I have been off them for 8 months and ok. I was always sick when I took them with various ailments. With the help of God and a wise, caring doctor I am finished. I did this at age 76.
God Bless you.. The Lord is the reason I’m still on this earth 😢🙏
Amen 🙏🏻
FABULOUS !! More & more Drs. are working to get patients off. If a dr. Retires, moves, dies – often other Drs. Are reluctant to prescribe … and they take people off TOO quickly or CT – not great either way.
Good for you. I was on .5 mg (equiv to 10mg of diazepam) for 35 yrs. 😳 I’m almost done a 2 yr. taper … slow, steady, safe !! I am 67 yrs. Old. This doesn’t have to be hell, hard, painful… with a positive mindset & confidence tho gas will be better – I got through go this with gratitude 🙏
Our bodies adjust is we are slow to taper .. GABA receptors need to get regulated over time & learn to work on their own… this frees up the central nervous system to relax & work happily as it should – the body can work on it’s own again w/o interference from the meds…
Those annoying/terrible/seemingly life threatening symptoms begin to dissipate … ahhh ❣️ Hard to believe, but true.
I have been on clonazapam 2 years. Started with low dose but has been on 1 mg since trauma last may.
Will I have issues if I taper off slow? It’s not working as well and I’m having anxiety.
My psych is willing to work with me but I’m scared. Some of my friends whom are on the med (clonazapam) have been on 20 years and tapering with no issues.
Im scared.
I’ve been in .5mg for 35 yrs. The key is a slow (2-4 wk holds) low dose (approx. 5% cuts from last dose) taper
Took me a yr. To taper to .25mg & now I’m part way in to last .25mg pill ( in Canada we have .25mg pill.. lowest dose)
If you check out FB Support group : Besting Benzos … you’ll find a great group. Founded by Rosalind & David Jones. She is in her 70’s & had LONG, challenging experience with benzo use & taper. They moderate the group & have another couple of people who mod also. It’s a positive group, we can talk about what we’re feeling, how we’re feeling but mostly it’s sharing experiences & supporting one another.
David also helps people if they request, by making a personally tailored taper plan – dry cut/weigh(hold, water taper or combination if want say dry cut & water when lower …
He just helps us with a plan that adheres to the Ashton Manual taper (they are from U.K. & knew Dr. Ashton)
The main thing is – do your reading, research, get a support group, & have a taper plan … knowledge is power. There’s no need to be afraid. The reason people may do poorly is too fast of a taper …
Benzos directly affect our brain, central nervous system & GABA receptors … tapering slowly means these are allowed to adjust & heal ..
We’d love to have you there .. anyone really who’d like the support ❣️
Paula, please try to rid this drug… go extremely slow and fight your ass off to not go back!! Prayers my friend..🙏🙏🙏💪💪💪 please don’t let them prescribe you anything else or “diagnose “ you with anything else!! Trust me! It’s the withdrawal from the benzo causing all the problems! Hang in ther there and fight!! If it takes you YEARS to taper, do it .. slow. Hang in there🙏
Hello …. I am reading this and going crazy . This is all happening to me 30 years of clonizapam . Having all the heath issues running from doctor to doctor . I take .25 3x per day weined down to this . Now what do I do ? If I tell pcp they will put me in mental hospital . How can I fix this ? My health conditions all of them . I wi have scared . Plse reply urgent need help
What health issues are you having?
You’ve been in 30 years?
Janice, I’m so sorry this happened to you.. I would seek out a HOLISTIC DR. Get off the benzo completely!! Very slowly I was chasing my symptoms for YEARS! In and out of psych wards..😩 I’m not a doctor, but what I can tell you is several people are misdiagnosed with “illnesses “ that mimic benzo withdrawal- and are put on meds to treat that misdiagnosed illness! I do believe that once you are off the benzo, all these other “ illnesses” will go away.. it’s the benzo .. and other psych meds are no better, all poison and wreak their own havoc.. I ended up on SIX additional psychiatric meds and all the while they were “treating “ benzo withdrawal. My ruination 😢😞 prayers for you my friend, you can do this 🙏🙏💪💪🙏🙏
Check out ‘BEATING BENZOS’ FB support group .. very supportive, positive, well moderated. Personalized taper plans made for those who request, as per Ashton Method. (Must be a member of group to request a plan)
I’m a member & am very grateful for the creators (Rosalind & David), admin, moderators – VERY responsible, they knew Heather Ashton who helped Rosalind w/ her taper.
I have been taking them for a couple years on and off, Xanax, 5mg-1mg. I started having bladder pain and my hair was falling out in a male pattern baldness kind of way ( I am a 35 yr old woman). SO I went to the doctor and they said I had a UTI even though they couldn’t find any bacteria. SO I took A LOT antibiotics and it never went away. I kept getting misdiagnosed. Finally, a male gyno said I had Interstitial Cystitis….and also PCOS because I showed high testosterone and my period is going away little by little every month. Welp, I am in crippling pain and I found this article realized whats going on and took way less xanax last night ( like .10 mg) and guess what? For the first time in a year I took a solid poop. I also vape nicotine which is an endocrine disrupter as well. I will be quitting both those things, and I have a feeling I will start healing
Hello, I started taking Benzodiazepine (Xanax) in my late twenties. I am now 63. I experienced interdose withdrawal over the years but was able to manage my life to a level of what I believed was acceptable. In my late 50s my symptoms started consuming my life with medical treatments and misdiagnosis. With continued suffering and devastating physical and mental symptoms I realized benzodiazepines were probably responsible. I have been tapering for two years now and still have disabling symptoms. I have found hours and days that are worth living but the toll of this withdrawal has been devastating. The hardest journey I have ever experienced, and I hope one day I will look back on this time and say I was able to overcome it. My hope for all the people suffering from this is hope. Love Tim
Same situation.
Off from 2.5 years but symptoms continue to get worst and worst.
I am devastated.
How do you approach it?
I was nicrodosing with alprazolam 0.125 mg for 45 to 50 days … 3 days after i stopped drug abruptly i have chtonic refractory urticaria not responding to any treatment . What can i try .? Please help me
Hello,
I am 55 yo
After 20 years of prescribed xanax for insomnia ( neither depression nor anxiety) started struggling with parestesia all over the body, brain fog, fatty liver, hypertension, increasing insomnia and fatigue, photophobia.Bylateral early onset cataract at 45 yo. Rare Diseqse dept department did not found anything. Fibromyalgia does not clearly apply. At 53 yo incurreed sharp hyposmia and dysgeusya, blurred vision, slurred speach, sight issues (Oculist says everything is ok) such as double vision, contrast issues, strong fatigue, sleep deprivation, defocusing, lost sensitivity to heat/ cold, weight increase, accelerated aging.
From a very active social life I lost many of the friends. I am destroyed and disbaled. Phisycians are not able to give me an aswer.
Nobody believes that benzo are the cause. To me is strictly connected and led to a neurogenarative – like disease despite dismissal of benzo did not generate withdrawal effect.
It’s a permanent brain damage….thats it!
In my country there is no association that highliths the damages of benzo
Is there anybody who experieced similar situations?
I have severe parathesia from benzos and I figured it out myself. 3 mg of Klonopin for 35 years and five years ago it stopped working. Never got an increase and pins and needles as shocks all day and suicide attempts. Well last week I had it. I tried 12 mg one say and it lasted for three days. Had no shocks pins and needles I told my ass Dr she needs to increase this to that so I can be normal again. She won’t. Bitch put me on 3mg of valium a day didn’t work. I need help no one cares and I never get help. Parathesia is hell now
Pls tell me how u stop the parathesia as I have it five for four years 24/7 being on benzos for 25 years I am ill from this parathesia and no one gets it. Got all nerve pills and everything stopped working due to Klonopin. Now all of a sudden they started me on valium three mgs a day. It doesn’t work either now but I am blaming all this on drs yes I increased it on my own cause they never said benzos caused this hell. Hope u r better can’t wait to here from you
Mary
dannyflavio96@gmail.com
Yes sir, I was on benzodiazepine KLONOPIN .5 for 10 years. Well, after two years of taking it, I started having weird symptoms. Anxiety, irrational fears, panic attacks, vertigo, and a slew of other symptoms. The symptoms became debilitating…. I had to quit my job, lost my house, had a bout of alcoholism because it’s the only thing that took the symptoms away went through 18 psychiatrists and counselors, was in and out of psych wards for years.. doctors said I was too symptomatic and I was a hypochondriac! I chased this “illness” for years!! ruined my life..was put on 6 more psych meds for this “illness “ and those meds wreaked their own havoc and withdrawal! All the while it was benzo withdrawal causing everything. It was tolerance withdrawal..😢😡 The most DEVASTATING AND HORRIFIC thing I’ve ever been through. It’s been four years off all meds including the benzo. Unfortunately, I still struggle terribly every single day. It is BENZO INDUCED NEUROLOGICAL DAMAGE – it is called BIND- it’s a real thing. I feel for you. And we sufferers have nobody to hold accountable. It’s truly criminal..you’re not alone. Go on YouTube and search “Medicating Normal”. It’s truly eye opening and makes you feel not crazy. People are suffering at the hands of “doctors “. Prayers for you my friend. Prayers for all of us 🙏😢
Man oh man oh man! I am dealing with this issue and have been fighting for them to look into the Benzo and it has fallen on deaf ears. I also begin to wonder how many have we lost by being dial with dementia when it’s the effects of the Benzo which brings down the count of white blood cells. For a patient to still be on benzos and diagnosed with dementia is killing and will eventually lead to dementia. The benzo attacks the brain and decreases white blood cells. The white blood cells is what replenishes the brain as well as anything else that might be injured. I just don’t get it. It’s right in front of our eyes and they refuse to listen!
Man oh man oh man! I am dealing with this issue and have been fighting for them to look into the Benzo and it has fallen on deaf ears. I also begin to wonder how many have we lost by being dial with dementia when it’s the effects of the Benzo which brings down the count of white blood cells. For a patient to still be on benzos and diagnosed with dementia is killing and will eventually lead to dementia. The benzo attacks the brain and decreases white blood cells. The white blood cells is what replenishes the brain as well as anything else that might be injured. I just don’t get it. It’s right in front of our eyes and they refuse to listen!
I have been on clorazapan 0.5 for probably 10 years. I am having these symptoms.
I will reach out for help. I just take 1 at bedtime for sleep.
I can relate. I’ve been on a long taper . After an 18 year addiction. Day 2 no Benzos after 10 month taper and detox. looking forward to a future
I am 35, female, and I was given Klonopin (1mg) and told they were “just to take the edge off”. I only took them for about two months, and not even every day, only whenever the anxiety got to me.
Suddenly, I feel like I can’t go a day without them. The first week or so was CONSTANT panic, trembling, sweating hands and feet, and absolute terror. I have stomach cramping and pain, difficulty breathing, or “air hunger”, sharp pain that radiates from my stomach, to my spine, muscle cramping, facial flushing, hot/cold flashes, worsening acid reflux, worsening agoraphobia, and horrendous depression and thoughts of suicide, electric shocking feelings, or like my insides are being twisted, “jelly legs”, RLS. I already have hypochondria, and this has made it so much worse. I’ve been bed ridden for two months exactly, since my last dose.
I have almost gone to the hospital several times, but the agoraphobia keeps me sequestered away, along with health insurance that hasn’t kicked in yet, and the debilitating fear of catching COVID since most of my hypochondria revolves around trouble breathing/the fear I won’t be able to catch my breath.
My brain keeps telling me it’s not withdrawals and that I’m going to die a slow, agonizing death from something more serious. It’s starting to feel hopeless and I feel like the only way out, isn’t the way I want to take. Whenever I work up the courage to even step outside, I make it up my stairs and then I feel like I’m being crushed and can’t breathe.
I’m hoping to find some online therapy that will prescribe medication so I can actually get on something more long term, that will help me handle the panic attacks better so I can actually go to the hospital.
I just want this to be over with.
I have been on 4-8 mg of Xanax for almost 8 yrs I have been tapering off with my dr then he changed it to lorazepam and I started getting sick and feel so hopeless ! Also been diagnosed with RA and they’re thinking I have lupus . I I am so hopeless right now about to lose everything maybe even my life because of a pill ! I have many regrets but none any bigger ! God bless everyone wouldn’t wish this on anyone ! ?
*GOD BLESS ALL OF US
Your are lived and your life is worth fighting for please don’t give up!
I am a 50 year old male. I have beyond severe thoracic and Lumbar scoliosis. I hadn’t ever taken anything for it, but at 46, the pain became too great. After subsequent Dr. Visits, CAT scans, and MRI’s, I was prescribed 1mg Klonopin as needed for sleep, and 300mg Gabapentin 3 times daily. I should add that I had always been a level headed individual, no criminal record, no psychological issues. I actually felt pretty good for about two months. By the end of the third month, I was feeling strange and ethereal, like I wasn’t in my body, but with intermittent bouts of pain. Two weeks later I was constantly edgy, agitated, fearful, distrusting, and defensive. I began to worry so I began reading up on “SSRI horror stories” online. I was blown away by the number of shocking testimonials of people’s horrifying experiences – and I hadn’t even gotten to the withdrawal parts. I told my wife that I had to get off these drugs immediately regardless of my pain level. Having been a very tough blue collar worker who in spite of the scoliosis, managed to stay in shape, and tough out a million hard situations, I decided to cold turkey it, as I became disgusted at the thought of these drugs in my body. The hell that insued was llife altering in the least. The following are stories recounted by my wife, as I have very little recollection of about 6 months of my life. I have close too 100 scars from slashing myself on the arms and chest, because I believed I couldn’t be hurt, I would violently hurl dishes, shoes, etc. throughout the house. I would lay nude in fetal positions and bawl relentlessly for hours. Much, much more – too much to even go into. I felt like I would get electric shocks in my brain every now and again. My arms would feel as if removed from my body. Anxiety so bad our bedding needed to be washed and dried daily. I could rarely eat, and lost close to 20 pounds (I’m 5’10, went from 178 pounds of lean muscle, to 156 pounds in less than two months). I looked like a walking skeleton, and to this day people tell me that when I would talk to them I would look right through them like I was talking to someone else. I lost nearly all my friends, due to the fact I had become “unhinged and unpredictable”. I don’t blame them. When I became a little more lucid, I spent hundreds of dollars on every supplement that had even the smallest potential too alleviate any fraction of the terror, loneliness, self loathing, aggression etc. I was stuck in the loop of not understanding how it,seems like a concerted effort by doctors to completely dismiss any of this being attributable to what they’re peddling. Nothing worked until I actually was able to make it to the ocean ( I lived by the beach at the time) and was able to get into the water, and off of the terrestrial soil that I believed was now my enemy. It took about 18 months to feel about 85% “normal” again. My wife force fed me nothing but the best organic foods, and of course no caffeine, sugar, etc. In the last 5 years I have been pretty much back to normal on the outside, but in times of duress, I can feel those same, uncontrollable compulsions trying to take over. The best advice I can give via my experience, is to do anything you can, and trust me I know how hard it is to muster ANY kind of will to do anything when going through this, but self distraction is a big key. I, like I’m sure many others, found it nearly impossible to not fixate on the relentless symptoms. Try doing a puzzle, play with a pet, if physicality allows, LIGHT exercise. Practice self respect and realize that you were only seeking help for an ailment, and what’s happening is not your fault. TIME is really the major factor in getting through this, complimented by healthy diet, and most importantly, a trusted loved one for support, which is of paramount importance. Although it seems through countless posts that regardless of weather you taper or go cold turkey, it appears that there are going to be brutal withdrawal symptoms regardless. That said I would not recommend the cold turkey method. It takes a degree of fortitude that is beyond what you can imagine. Literally hell on earth. My love to you all. In the grand scheme, all of us either going through this or having gone through this share a connection. Now I will do my best to get through at least 5 posts on this thread without weeping, as it is sure to bring up the devastating memories of having gone through this experience
Wjat tondo if im im fight or flight all the time, cortisol adrenaline surging gi freezing and backed up wasting from barely able to eat, concerned about my adrenals, i was put on this after a dr injury in 15, got up to 6 mg X by 20. Didnt know anything about the drug, psychiatrist retired unexpectedly during pandemic, have so much trauma from the fight or flight and how its affecting me, fear of dying, cant find a psychiatrist to help me, was forced onto a taper, having to try and figure it out on my own, body has gotten way worse, my autonomic nervous system is on overdrive which is hurting me and taking me down, primary care is tapering since i cant find a psychiatrist and he doesnt want to prescribe, even though he says hes going slow at .50 a month, my body isnt doing well, need out of fight or flight, im starving to d word due to back up in gi and preps wont work, skin and bones, in illinois and cant find help. Dont want to die, look 70 lbs. now ? idk what is coming from what, dx of pots eds mast cell mold heavy metals still have jaw/neck injury, gi freeze, trapped gas, wasting, sensitive to everything, not sleeping nightmares shortness of breath, severe malnutrition, need help!!!! My primary doesnt care how sick i am and says hes going slow, its not working for me. I need help with surging bad! Trauma and ptsd from what i go thru daily. God please! I just want to eat and poop and sleep and no surging. I never see anyone with my issues. I feel like im alone, cant go into groups, too triggering.
Rich, thank you so very much for this detailed description of your experience with getting off of this medication. I am in your age group and have had eerily similar the same effects from developing a tolerance and now a slow taper from 6mg of Klon daily down to .5mg of Klon. Unfortunately, my prescriber lost the patience to continue on this slow taper over the last year and I am now faced with tapering off completely within the next month and a half. I am determined to get off of this medication and will heed your advice regarding the ocean, my pets, light exercise, distraction, healthy eating, etc. Please keep me in your thoughts.
I feel your pain. I am going through nearly the same type of thing. I have lost my job. I feel like am loosing health and my mind. I am in so much pain.
Thank you for this insight article and validation that I’m not crazy. Every doctor has told me that my Benzo withdrawal symptoms can’t last this long (7-8 months after taking.5 clonazePAM for 4.5 months). Unfortunately I was not advised to slowly taper. I stoped all usage in 3 days.
I am getting better but still experience heat and exercise intolerance; resulting in burning mouth (tongue &lips) blurry vision, tachycardia, poor sleep, immediate drop in blood pressure, nerve tingling on my shoulders, back and arms, hives on my back , and dry cracked finger tips.
2-3 months ago I was diagnosed w/ early Sjögren’s syndrome and are being treated w/ LDN by a function medicine Dr.
A natural path recommended taking a log grade lithium orotate. I was told it is the Only thing to heal the nerve or neurotransmitter damage from the Benzo.
Anyone else tried this?
I used to be an endurance triathlete just over a year ago before being prescribed a benzodiazepine that was a contraindicator for my thyroid Rx….by my thyroid doctor nonetheless.
Thanks again for restoring some of my sanity.
How is the LDN working for you? I have heard a lot about it. Also I don’t know if you are aware that .5 mg of Klonopin is equal to 10 mg of Valium. It states this in the Ashtons Manual. I really feel that was part of my demise as my doctor switched me from 2mg of Valium to .5 mg of Klonopin. Have been off almost 18 mos. and still in withhdrawal
Any word on the LDN?
Lora,
Thank you so much for reassuring me of my sanity. I’ve been struggling with heat and exercise intolerance myself along with tingling in more parts of my body than I can list. Combine that with severe brain fog, persistent, but unique headaches and general malaise. Thank you for sharing. The exercise intolerance has made me question the health of my heart (went all the way to getting an angiogram to verify it was fine). It’s amazing how destructive these meds are.
Medical marijuana is helping me taper. Psychiatrist says no medical marijuana but I figure what do they know-they got me addicted to this. This is the first time in over 20 years I’ve had any success with tapering off the Clonazepam. Medical marijuana!
How? I can’t smoke and am so sensitive? Wondering if cbd can help at all.
I have almost all the symptoms of craniocervical instability and it is absolutely debilitating. My mind was blown when I saw Ehlers-Danilos syndrome on this list. Even in the world of benzos, I feel like this is a rare withdrawal effect. All I am wondering now is….will i heal? I pray that we all do because at times this is terrifying.
Im on ativan, have been for a few years. I have an “undiagnosed” illness(tons of symptoms). Just wondering if anyone else feels like their heart is failing? Im basically bedridden and have been for awhile. I have tons of symptoms that many of you have, but the main thing is what feels like heart failure. Does anyone experience anything like this? Tons of symptoms point toward heart failure but the one that stands out is when I wake up from laying down(better if I sleep sitting up) I cant breath and I can tell its heart related not lung. FYI heart is not racing at this point but feels like its pounding. Then all day every day i have “normal” heart failure symptoms/ pots syndrome.
I was having a racing heartbeat, high blood pressure at times and unstoppable heart palpitations. Went to the cardiologist and had the heart monitor for a few days and they said I’m normal. Found out that it was the benzo after I did a process of elimination. Heart palpitations started to go away. Now at .25mg only feel them every once and a while I think cause I have coffee which you aren’t supposed to have when withdrawing but I’m too tired sometimes from not sleeping well which isn’t related though.
Yes exactly….I can not go on like this. No help from doctor’s or hospital who did this drugging me up to 6 MG 1 mg every 4 hours in hospital on top of opiates, now just labeled crazy, have conversion disorder, severe depression, now my heart has been affected proof in EKG AND EEG REPORTS that the doctors AGAIN lied about saying my heart was fine….go home..it’s not fine at all. Cardiologist is to review but no one to help me properly off Ativan and it is getting worse in between doses or withdrawals brings on seizures or actually AKANESIA? Sick all over… suicidal….now..sister want to put me in detox center if they even take me with heart…..I HAD A LIFE..IM A GOOD PERSON..I LOVE ANIMALS….IVE TRIED TO BE A COMPASSIONATE CARING HUMAN….
THANKS TO UNCARING IGNORANT DOCTORS AND HOSPITALS MY LIFE IS OVER AND IVE HAD TO FIND A LOVING HOME FOR MY BABY CAT WHO IS MY LIFE! THE VERY REASON I HAVE KEPT TRYING.
ALL THIS OVER A HOSPITALIST ION IN JAN WHEN DR PUT ME ON STEROIDS, ATIVAN, DAMAGED MY SPINE THEN NOTHING BUT DRUGS I WAS NOT EVEN AWARE OF OR TOLD….. I COULD NOT FIGURE OUT WHY….SEPSIS, ABUSE IN HOSPITAL, BEING TREATED LIKE A PIECE OF TRASH LITERALLY….
I have similar. Lots of people in the benzo groups have acquired pots. Some have gotten better after being off it for years, some sooner. Some not. I am diagnosed by a cardiologist for pots. Ive been off benzos 3 years. That shit gives you pots for sure. Cardiology checks for other conditions as part of a pots diagnosis. Find a cardiologist that is pots trained, neurologist or internal medical dr, but you will still need cardiology tests. Some people need to see an immunologist for part of their testing too depending off the cause of it.
Good luck if you wean. I went slower than the Ashton manual recommends. Hardest and best thing I could do.
This sounds like me. I was taking .5mg as needed 3 times a day or just at night for sleeping. I decided to go off them on my own. Sunday I was in the er with palpitations of 168 beats per minute. Now I am wondering if this is a withdraw symptom.
When I was going through benzodiazepine withdrawal I tried every supplement I could find to end the misery and nothing worked. Only time and a healthy organic diet. I was nearly completely healed in six months. My advice has always been not to take any supplements at all. But if you want to try the lithium then that’s your choice. But I can’t advise one way or another.
Very informative resource. Thank you. Is anyone here have ever experienced dental issues such as teeth numbness, teeth stiffness, teeth popping, feeling teeth as fake while on Clonazepam/Diazepam?
I ruled out any problems of a dental origin and any Dr. cannot explain these symptoms I’m having (apart from one guess involving a cervical spine).
I’m on a quite low dosage max 0,5mg of clonazepam per day or 2mg of Diazepam per day, sometimes taking when needed, sometimes stopping for a couple of days, increasing or decreasing the dose slightly. Tried to stop completely 3 or 4 times, but failed. I’m having lots of depression and anxiety/panic attacks (I believe it’s worse when I stop Clonazepam).
Is anyone here can help me to quit? I’ve been on these drugs for around 5 month now on and off. It was prescribed to me as a muscle relaxant.
Thank you.
Dear Anastasiya
I was on roughly the same dose as you . But not for 5 months .. more like 5 years. I fried my brain and didn’t even know it was the benzos it was such a gradual thing… so many health problems and mental health issues I was slowly going insane.
You will be okay if only been on 5 months. Google the Ashton manual and get a taper plan. Slow is key ! Taking months. It gets really rough when your at zero and the brain has to re learn how to live without benzos. The Internetsaved me – drs know nothing !. So 1 ashon method. And go to balancingbrainchemistry.co.uk to learn how benzos damage the brain and how to repair it.
Yes after i jumped off final dose I have a numb mouth and teeth. It’s never came back and 1.5 years still…
Thank you Jay for sharing this. So, basically I’m taking these meds exactly because of this stiffness (dysesthesia) sensations in my teeth which varies in intensity. This last one was actually diagnosed by a doctor, but with no explanation why.
Does it mean even if I manage to quit these meds, I’ll have this condition of rigidity/stiffness left forever?
I’ve been to many doctors and every one says it’s is very unlikely it’s is caused my diazepam/clonazepam (neither as withdrawal effect nor as side effect). Docs also did not see any causation with the endodontic procedures I’ve been having recently (things like nerve damage possibly), even though I had severe post operative pain and trismus (which is continuing now and that’s why I take Diazepam as a muscle relaxant). They told me that it is very unlikely too to be a reason.
So I have no reasons left for my condition. Everybody tells me it is only my anxiety which makes it worse.
I’ve tried to quit many times, (last time 9 days without) and it was a hell and with some sort of low/mid doses, my symptoms definitely improve but not disappear.
My TMJ suffers from muscle trismus horribly and my life is pretty ruined because I cannot eat, speak or open the mouth normally. 🙁
Also, I’m not sure about this tapering method because I’m taking like one and a half tablet in 24 hours so, not sure where to start.
Any additional advice would be highly appreciated.
Thank you again.
Everything symptom you described can be attributed to damage to the central nervous system caused by benzodiazepine. I would not advise speaking to any doctor about your symptoms unless you happen to find one who is “benzo aware”. Most doctors will only make you feel worse. My advice: do not take any supplements at all, drink no caffeine, eat no sugar and eat only organic foods. Use only non-toxic body products, no perfumes whatsoever, and nontoxic cleaning products.
I am writing to you, as a survivor. Won’t tell my whole story ,,you are in it ,,,don’t need to hear the horror of it. You can survive this. I was on it six months for menopause, ridiculous,,,,took me three years to do through a withdrawal,,slow. It’s hard, lost family, friends, loyal husband took care of me. I am 66 and well, ,,,it’s terribly hard. Wish I could give you hope and strength not to give up,,,,not linear, better then bad again. There is a God. With love Sally
I am having the gravity issues and the pushing down in the bed with so much pain I to suicidal because of this. It started out in November and it has gotten increasingly worse this month which I think might be August I’m not sure. I was on Klonopin for 28 years and two years ago was taken off rapidly in 2 weeks. I then was off 11 days and reinstated with some semblance of a life. 7 months went on and I was crying everyday depressed suicidal I got info off of Facebook group and started to water titrate. Not too much though only from 1.5 to 1.25 and over a year I now have fibromyalgia type pain I have a lot of issues with circulation my legs are purple. I have lower back issues from sedentary lifestyle I can’t sit or stand for long and now when I lay in bed I feel like someone is sitting on me causing me so much pain is unreal. What is with this gravity crap? Or the pushing in? I don’t understand it at all I’m scared to continue tapering but obviously being holding since April is not helping I hope you can read this and get back to me.
It has been a little over two months since I ended my three year Benzo taper. I am still experiencing pain and depression from what seems to be never ending symptoms. I took this medication for over 30, only because I could not safely discontinue without severe symptoms. Now I’m picking up the pieces of my life. I am holding on to hope and inner strength in order to move forward with a career I set aside.
I have the pushing down stuff. Unwanted movements. My head gets stuck on the bottom of my neck. All kinds facial grimaces.
Day 122 benzo free… off of other medications as well. Just bupropion left.
I don’t wanna go on any medication anymore. Just started seeing a neurologist. Otherwise it’s a waiting game.
Been on Clonazepam 1 mg morning and 1 mg nightly since I was 44 or 45. I’m now 69. I’m so angry I’m addicted to this. Repeated attempts at withdrawal have been unsuccessful. This time I’m using medical marijuana. Psychologist said not to use medical marijuana but I figure what do they know look what they’ve done to me. Withdrawal is still horrible but not as bad. After two weeks I’m down to 1 mg a day and I feel like I may live! Medical marijuana folks is the answer!
What strain do you recommend?
Indica, and not the strongest strain. Sativa is the more brain psychedelic and gets your mind racing. Indica is the more feel good, body buzz, but, still don’t buy any dispensary’s strongest strain of Indica. Go for under 20% THC. I’m also a Benzo person put on its use 30+ years ago. Just today decided to say F this. Will take years of working with different Doctors. I don’t recommend using marijuana as an alternative to Benzos. Both are psychoactive and it may be tough to get off both. Harder from benzos than MJ, imo. See a qualified Doc ASAP. ❤️
Helen I believe it can be very beneficial to so many people for so many different ailments and obviously it helps when tapering off of benzos too. It’s a miracle plant. I’m currently tapering off of a low dose .5-1mg about 3 times week. I have interdose withdrawal. I’m going to try medical marijuana to help me. I’m in CA so it won’t be hard. Thank you.
I absolutely would not use medical marijuana. It can trigger hallucinations and people going through withdrawal from benzodiazepine. I know someone who had hallucinations for 30 days after using medical marijuana just once.
This article in particular saved my life. Thank you.
I’ve been debilitated by a 6 week rapid taper of Xanax my docs had prescribed for 13 years. I had many tolerance symptoms and now know it was Xanax. Bedridden for 30 months from full body severe muscle squeezing/stiffness, nerve pain, etc. I pray for death now rather than healing.
Did your doctors take you off the script for Xanax? Or did you decide to rapid taper on your own?
I am just realizing that the ativan0.5 mg may be the cause of a lot of the physical issues I’ve been experiencing ! I have been taking it nightly for over 5 years! What do I do?
Hi..first don’t be scared You can do this very very slow.. Find a Doctor who will let you go at a pace you want. ALSO CK OUT DR B on youtube it will educate you and you will be ok…0.5 is your dose 1x a day ?? Email me gary.a.simone@gmail.com if need help
Slowly taper
I have the same problem with my muscles. I have found that cold and hot therapy helps. Massages. Cbd muscle cream. Advil. Stretching and exercise. You will and can heal.
I’m 34 years old and
currently on another benzodiazepine taper, for the hundredth time. However, for once I am actually serious and being compliant with it. As opposed to my usual plans of just using it as a stop gap while I look for a
new Dr. That is a writer. This is the most well designed taper I have ever been on I believe (Clonazepam
started at 1mg titrating down 0.1 ml every month or two with a Dr. who is letting me have a large part of the say. I have been a chronic user of all of the main bzs commonly prescribed in the U.S. for about 7.5 years, however I began taking them since late 2007 “as needed” and have binge used huge amounts and than didnf use any for a week or 2 for ever since than. However for the past 3- 4 years I have used them daily with a consistent dose, while slipping up and until starting the taper I opiates/ binging for 2-3 days about 2 times a month. However I have been just following the taper for several weeks now.
I also am on Methadone (clinic, daily dosing) and have been for many years. For pain management and maintenance, and harm reduction I guess you could say. This has been much more consistent compared to my benzo use… I originally became dependent/addicted to Oxycontin in 2005-06 and recieved it for about 2 years from a Dr., but was eventually forced off of it, and at the time suboxone was too expensive so that Dr. Decided to put me on Methadone… and then around 2011 I was switched to morphine tampered down a bit and went o M suboxone, after 6 months I entered rehab on a benzo taper and no suboxone (except what I snuck in with me. However it was there that I learned that large amounts of benzodiazepines can pretty much eliminate you from noticing that you’re in withdrawals at all if your on a low enough dose the opiate or opioid, long story short I went back and forth and back and forth between multiple combinations of benzos and methadone, suboxone, tramadol, heroin, opioids and small amounts (3-6 months of no opiates, sometimes no benzos, I have tried to detox from benzodiazepines more times than I can count but the longest I’ve ever been successful was maybe about a month or month-and-a-half… the Post Acute stage of withdrawals from benzodiazepines is something I just have never been able to handle, and this is all Complicated by the fact that I have had a seizure disorder that was diagnosed long before I was on any medications, it went away when I was about 12 years old however I’ve been had a traumatic brain injury when I was 20, after an accident. Ironically this is when I was prescribed benzodiazepines for the first time after the accident I was given them after two different seizure meds alone wouldn’t stop my seizures or control them and so they finally got them under control with a small dose of phenobarbital 1 milligram of Klonopin three times a day and Keppra which is a seizure medication.
If anyone was kind enough to read all of this does anyone have any advice for me, has anyone gone through a similar situation has anyone done slow long term taper like what I described please feel free to respond to me or contact me via email shannonteddybrenner@gmail.com
Thank you to whoever created this site and thank you to all of the people on here who share stories and experiences and knowledge with others. Best of luck to everyone on here.
I am now 137 days Benzo free.
It took me 4.5 years of hell to taper Xanax. I thought I would be better by now, and in some ways I am, and in others I Continue to struggle.
It seems I have developed Arthritis throughout my entire body (very stiff neck/spine, sharp pain in elbows, and knees). I did not have any of this until I finished my taper. I now suffer with constant chronic pain along with many of my old SX’s such as anxiety, dizziness.
So, do I actually have arthritis OR are all these new SX’s and pain directly related to the benzo?
I am also stunned at what this drug has done to my physical appearance. Wrinkles…I now have plenty. Weight…it loves to collect around my middle. Muscle Mass…what’s that. I think my skin is trying to slide off of my body. thought I would hit 60 in shape…not anymore.
I try to walk daily, and I’ve started trying to workout to an old Tae Bo dvd. It’s a start.
I appreciate all of your posts. It truly helps to see that I am not in this alone.
Health and Healing to all!
I would like to hear from those who can attest that the physical attribute decline gets better over time once off the drug.
Ive been on clonz for sleep 4 5 yrs upped dose missed doses zopiclone 2 half years mirtazaline 2. The pain on eating js horrendous horrenous i burn all inside all through me eating for hours. Feels like food stuck. Ive weaned kff zop and started going high eating carbs sugars i now down to low mirtaz i sleep sometimes pain eating is horrific .acid worse. I then missed one night mirtaz slept next night no sleep despite clon took melatonin felt dreadful. Next night took 2 magnesoum and low mirtaz again slept and pain burning all inside still after eating often my legs are everywhere. I am weak arms legs till it burns in my back a.m. lying here and sugars seem to go up. I reacted whikst on zop and benzo to every drug they gave me. I look wrinkled im overweight from mirtaz i had a broken hip muscles still painful worse bh evenjng. Often cant walk. Im soooo tired. I switched ladt yesr frkm 0.5 clin to 4mg diaz. The burning was horrendous and i was soo drugged up brain not tok bad. Each cut the burning so bad. So weak so tired. I dont know anymore. I have gadtritis but ppis do nothing. When im on fire i need sleep. When i stopled a benz ckon before no sleep and then so depressed no gut issues but then pain for a year a up back passing bms. Then a huge belly and ckuldnt get bkadder to fill unkess lay flat then burning thighs then id eat pee and burn alk up back. I cant temember but may have gkne back kn zop and benz. I am 72 and scared and miserable. Im in bed most days till gone one. I am quite agroohobic. I need help but noone to rurn to. Gp says stay on them
Medical marijuana is helping me taper. Psychiatrist says no medical marijuana but I figure what do they know-they got me addicted to this. This is the first time in over 20 years I’ve had any success with tapering off the Clonazepam. Medical marijuana!
I am fully recovered. I had a prescription of Ativan for sleep and I only used it as prescribed. After four years or so it started to damage my central nervous system and I had severe anxiety, etc. I did a four month taper. Six months later I was back to normal. But I was very strict about eating only organic foods, consuming no sugar caffeine or alcohol. No drugs. No supplements.
I’ve been on clonazepam for 3 years. I have developed muscle wasting and twitching. I had an apparent clean emg and ncs but things are slowly getting worse. I fear that I either do have als or maybe this drug is killing me. My muscle wasting is in my neck, shoulder, forearm, wrist and hand on my right side only. Has anyone experienced anything like this? I need to get off of this drug, I have a little girl that needs me
Hello. You do not have als !! I had this fear for a whole year! This is benzo withdrawal trust in me!
thank you for the encouragement!!!
Female 45 I have been on clonezepam off and on for over 20’years, however steadily on the past 5! I’ve had almost all the ailments as above including two strokes one over the occipital lobe causing vision issues, if I don’t take atleast .5 klonopin every 8 hours I am almost completely half of vision loss. I told my Dr to reduce my dose to .5 two times daily as I want to taper off controlled substances as I’m tired of dirty
Looks when I call in refill etc. I thought was a wander drug as it improves my vision to 20/40, so all that said this holiday month I took more than 2x daily but not three and dealt with blurry spatial vision so I’m on day 3 without I called Dr won’t give early fill, so I’ll go cold turkey as they say the next 6 days, I’m scared as I type this I can barely see,!id like this drug out of my system. Now with that said I don’t want to see anymore stricter laws but much more education! Thank you! Conditions I’ve had on list in last 20 years :lupus Lyme disease stroke interesting cystitis depression strokes 2 several ms work ups, seizure, female issues… that’s all I can remember off lists but in last 5 years I’ve spent no less than 5 to 10 weeks per year inpatient in critical care hospitalized from icu critical to regular care. Never abused drugs or this one never mixed with alcohol hope this message comment make sense as I can’t see what’s popping up on the screen ty
My fiance has been on Clonazepam “Klonopin” for around 15-20 years. Over the last three years her health has declined dramatically. She has told me to let her go. She says she is ready to die. She is having blood clotting issues and heart problems and now her Stomach isn’t digesting. Last year she had pulmonary embolism. Her doctor says her heart isnt pumping blood as good as it should and she has blood clots in her feet. Her Doctor says the White Blood Cells are attacking the red blood cells in her feet? Like an Autoimmune situation I guess. She was diagnosed as having Lupus 12 years ago. Her vision is also declining and she can hardly walk. Now her Dr is going to start tapering her off of Clonazepam. I feel she has been abusing this drug heavily to the point where she blacks out. I’ve seen this happen a few times to her.
Can you email I would love to talk to you and fiance. about the klo
It sounds like your fiance may have pots. Pots can cause increased heart rate of 30+ beats when going from sitting or lying to standing. Some people will blackout because when they stand their blood pools to their legs and feet making it harder for it to get to the brain. Pots can be debilitating, many people with pots are unable to even stand because of dizziness and fatigue. Pots can be secondary to autoimmune disorders such as lupus. Unfortunately there are not many doctors who are familiar with pots to make an accurate diagnosis.
It”s little late reply but experience the same. Right side of my neck is very painful,both muscles and nerves. So is my right arm muscles and painful constricted diaphragm. All signs of ALS. Please try to be positive.I believe its part of withdrawal.
Almost 3 years off benzos. 3mg xanex then Ativan about 4 years daily use. I moved and had to switch doctors but ended up in phychosis and stopped meds cold turkey was in so much pain when it first hit I was convinced I was dying seizures, hallucinations with most symptoms But now is just nerve pain and breathing issues mostly. Seen so many doctors it’s a shame we aren’t as educated out here in the states about benzo withdrawal syndrome. So many tests ekgs scans. Diagnosed now with fibromyalgia. When I finally found An online forum for benzo recovery everything made since. When I told my doctor he didn’t believe the meds could do this for so long.
Did you heal and feel better over time? At what point do you think you made a breakthrough?
I’ve had really bad muscle wasting. Couldn’t hold my head up And posture changed now I’m seeing a Chiropractor for this and light exercise to build up muscles. I’m almost 3 years out and still working on it. I also have right sided issues, nerve pain and numbness. Best thing to do is the slowest possible taper if you haven’t already, eat healthy and exercise. For some this can last years. As for your little girl you may want to ask family for help and really take care of yourself to heal faster. Good luck
Female 45 I have been on clonezepam off and on for over 20’years, however steadily on the past 5! I’ve had almost all the ailments as above including two strokes one over the occipital lobe causing vision issues, if I don’t take atleast .5 klonopin every 8 hours I am almost completely half of vision loss. I told my Dr to reduce my dose to .5 two times daily as I want to taper off controlled substances as I’m tired of dirty
Looks when I call in refill etc. I thought was a wander drug as it improves my vision to 20/40, so all that said this holiday month I took more than 2x daily but not three and dealt with blurry spatial vision so I’m on day 3 without I called Dr won’t give early fill, so I’ll go cold turkey as they say the next 6 days, I’m scared as I type this I can barely see,!id like this drug out of my system. Now with that said I don’t want to see anymore stricter laws but much more education! Thank you! Conditions I’ve had on list in last 20 years :lupus Lyme disease stroke interesting cystitis depression strokes 2 several ms work ups, seizure, female issues… that’s all I can remember off lists but in last 5 years I’ve spent no less than 5 to 10 weeks per year inpatient in critical care hospitalized from icu critical to regular care. Never abused drugs or this one never mixed with alcohol hope this message comment make sense as I can’t see what’s popping up on the screen ty
Hi..first don’t be scared You can do this very very slow.. Find a Doctor who will let you go at a pace you want. ALSO CK OUT DR B on youtube it will educate you and you will be ok…0.5 is your dose 1x a day ?? Email me gary.a.simone@gmail.com if need help
6 years off after my last dose i never recovered, permanent brain damage
6 yrs is not unusual. Protracted people have been ill for yrs. . Then heal. Barry Haslam in the UK is one. I know many 10-12-15 yrs off then got. Hundreds go thru protracted, this author needed to research that.
Hi Drew,
It’s the drug. I’ve experienced the same thing. You will get through this…it just takes a lot of time.
Hang in there.
Health and Healing to you.
11 year 8 mth still having weight gain muscle wastage
Nerves pain burning left arm i Kant move it or bending it back or lift it post drip finishing
Still healing
Hi…used adco Alzam for a month in April,they were only 30 inside,took only one daily as was told by my doctor,they got finished then I suffered very bad bad withdrawals,HEART palpitations,dizziness,headaches,chest pain and back pain,feel like theres something stuck on my throat,no appertite,am loosing weight,dry mouth,cant mention all,couldn’t sleep at all the whole month in May so in June was feeling better because i could atleast sleep even if not well but atleast,am stil weak suffering some symptoms so my question is how long will this go on,when do u think i will get my life back because i didnt use for a long time it was only a month…When do u think my mind and body will be normal again….I cant live like dis anymore…
I am trying to find the resources relating to the illnesses you mentioned which benzodiazepines mimic. I want to share this with my doctors and they will want to know where I got this information.
I am 9 years free of a Benzo. It has been a very long journey but have been doing good until recently. I had a setback in Novrmber due to a drug called Sodium Chromolyn for MAST cells. It caused some of my old symptoms to start again, ie dizziness, anxiety, hyperventilation, histamine issues and light sensitivity. Several of those are mentioned in your article. I do not have a MAST cell disorder and so I am suspecting other illness as well…Hashimotos, neuropathy, anxiety. I am especially interested in SIBO because I have no symptoms of it, but my test came back positive. Trying to track down as much information to share with my doctors about all of this. Thank you for any help and info that you can provide.
Benzo withdrawal, Ativan specifically, caused me to have mast cell activation syndrome and pots syndrome. Cromolyn sodium made me 10 times worse! Fortunately I was never on a high dose but I had been on it for years with so many medical problems that I didn’t realize were being caused by the interdose withdrawal. I tapered off of .5 mg a couple of months ago and I’m just now starting to feel like a human being again. I still have some neurological symptoms and react to some foods but not nearly like I was. I had gotten down to 95 pounds and now I finally can eat most foods and have gained 10 pounds! My Potts symptoms have resolved and I don’t take any MCAS medications. My cardiologist put me on a low-dose of propranolol beta blocker for my anxiety and it is doing the trick. I wish you the best and pray that you will not taper off too quickly.
How dis you taper off I’m.going through the exact same thing .only was on .5 ativan now I’m on clonozapam and trying to taper off .I thought that this was anxiety !
I had no idea that .5 mg could be the cause of my anxiety and dizziness.
THE ANXIETY IS 100% BENZO SYMPTOM! This is why there are SO MANY BENZO SUICIDES!!! It is MOST DANGER DRUG ABUSE TO BE PRESCRIBING THESE SUICIDE PILLS! But once your on the YOU ARE STUCK!!!
I had been taking Ativan .5 – 1mg on and off for a year. I stopped Ativan in March and by May was reacting to every smell and all foods. My Functional doctor believes it’s MCAS. I don’t have a diagnosis and have been taking quercetin and just started Chromolyn. How have you managed to increase your foods and weight? I am at 92lbs :/. Also, could this possible MCAS be a result of the Ativan withdrawal? My smell sensitivity has significantly reduced, could my food reactions ( not normal allergic reactions) also reduce. Any info would be appreciated.
Did anything help?
Can you please tell me how you tapered?? I have been taking less than a 0.5 pill once a day for 5 months..
Wow just came in here. I have been diagnosed with a mast cell disorder pots Eds so much more. Reading this I now believe or wonder if the benzodiazepines have caused this. Right now massive withdrawals due to script delay. Need to get back on and slowly get off.
7 years. Ativan then klonopin then ativan and then klonopin to begin a 5 month taper. Interdose withdrawals before and during taper were horrendous. The arrhythmias were so scary. Now, the dizziness and vertigo that just comes out of nowhere and won’t go away. The nightmares and insomnia are brutal. Tried gabapentin but know that has it’s own withdrawals from past experiences. Didn’t want to start inderal for fear of screwing up my heart more and having to taper off that too someday. Vitamin B,C,and D daily helped some. Just waiting for that window to open and stay open. The waves are the worst. I’m a nurse and never knew about these drugs and what they’re capable of until my military ptsd anxiety had me put on them. Don’t ever, EVER, go on benzos!!! Not even short term. NEVER.
Hi Debra. Could you please share with me your taper plan and time needed? Im also on Ativan 0,8 mg, but only taking it once a day and the rest of the day complete agony.
I am over 3 years post benzo. I am currently handling SIBO and it is a fight to be sure. Aside from this I would be nearly 100%. Rifaximin antibiotic and Bio-film busters are key to wiping it out and returning to your healthy you.
Thank you for your post. Do you think the benzodiazepines caused the sibo?
I have the same… Abused it under stressed conditions, i thought it is harmless…
What do you think is the life expectation for us? You said it is been 6 years, did it get any better?
First comment of 2020. I was on Ativan, then Valium and then back to Ativan for over seven years. Before that I was all kinds of anti-depressants, SSRIs, mood stabilizers and neuroleptics. Over 20 years of my life on these drugs. In 2013 I decided to stop all of the drugs and now have 2 years completely off those drugs. I was still on Codeine 3 for chronic pain but am now 3 months off of that. I wonder if the psych drugs caused some of my pain because I do not feel the need for the opiate anymore now that I am off the other drugs.I stopped trusting doctors. I did find one doctor to help me taper but mostly I did it on my own. He was good because I told him how to write the script and then at the end I had plenty to work with to cut the tablets in half and then quarters! I went slower than a snails pace. I’m done with Western medicine! Cannot afford a naturopath so I decided to do this all myself. It has taken hours of research. The worst of it is that my brain is damaged now, I know it. Mostly memory problems and trouble focusing and concentrating. I support my body with massive amounts of supplements. And detoxing off and on. On a daily basis I take high dose B vitamins including liquid B-12, fulvic acid, electrolytes, a nitric oxide booster, digestive enzymes, psyllium husk, Moringa, a good quality Omega 3, turmeric, magnesium, GABA supplement, melatonin, Tryptophan and CBD oil. For detoxing I use Food Grade hydrogen peroxide intermittent with Glutathione, and epsom salt baths. It’s all about getting inflammation down, repairing the gut and addressing nutritional deficiencies! I am in this for the long haul and I have made good progress. My depression and anxiety is manageable. I sleep now a good solid 9 hours a night and I am working. I have a good support group in a 12 step program but they don’t address all the issues with having been on psych meds. In addition to all this having some faith in a Higher Power and asking that source for healing has also been helpful. I still smoke cigarettes and want to stop, but hopefully that will come in time. Wish there was more mainstream support for this journey but those of us here who are trying are the pioneers. I see a doctor once a year for blood tests and that’s it! Best of luck to you all and hope this was helpful to at least one person.
I have been on Clonopin 3 mg per day lorazepam and 3 mg per day I am suffering with a lot of pain lotta joint pain hip pain I have been on this for 20 years this amount what should I do too get off this drug 1-802-734-1785 please
Arin omg wish I could talk to you your plan sounds so awesome.
This is my second round of coming off lorazepam. It’s been a little over a year of blood pressure issues, told I have adult asthma and various other issues that I have been told are cause by stress. Been on lorazepam for over 10 years highest dose 6-8mg a day as needed. Tried to stick to 6 most days. Over the last 14 months or so after seeing tons of doctors I am on tons of supplements and 1.9 mg a day and no longer drinking like I was everyday. It’s been a process and is very difficult. Some days I don’t want to get out of bed but have found exercise, eft, supplements(B12, hesperiden, Hawthorne berry, magnesium, vitamin c, Gaba, melatonin, St. John’s, and about 7 or 8 other supplements do help but it’s definetly the hardest thing I have ever done. I hope it gets better. I am only 31 work full time and have a one and a half year old daughter and about to finish my MBA while coming off this crap. Don’t ever get started if you can help it.
I’ve been on Klonopin for 20 years and was diagnosed with ALS a week ago. I’ve questioned my symptoms all along as they may relate to the long term use of Klonopin. My problem now is finding a Dr who would be well versed enough to help me. ALS is very serious and I want to be sure the diagnosis is solid. Suggestions?
Forgot to mention that I’m on 2 mg Klonopin, 300 Wellbutrin and 300 Lamictol. I successfully weaned myself off 80 mg of Prozac during the fall and early winter.
Katie, sounds like you and I have been on a similar psych cocktail. Thankfully I realized years ago that SSRIs were making me worse. It took me a bit longer to figure out the damage benzos were doing. (See my above post) I too have been on all these drugs for over 20 years. Thank God I’m down to just Depakote at a low-dose and plan to keep getting better and better. Make sure you have a doctor supervise you that is well-versed in tapering benzo’s. I would not be surprised if it did not cause or contribute to your ALS. I had just started having neurological symptoms when I realized what my problem was and started tapering. I may have caught it just in time. But the tapering is the dangerous part so take good care and take it slow.
Katie, I’m so sorry to hear this diagnosis. I don’t know if this will help but I had a severe b12 deficiency and it mimics all the signs of ALS. I thought I had ALS. Please have them check your b12. As for benzo use I have no other information.
Katie: How were you diagnosed with ALS? We’re you presented with results from tests?
Katie,
What symptoms were you having that led to your ALS diagnose? I am thinking I need to see a neurologist because I am feeling tingling and muscle stiffness all over along with my bottom lip twitching. I’ve been tapering off 30 years of daily Xanax. I managed to get from
4 mgs. to 1.5 without issues, but suddenly have issues.
Well, well! I just happened upon this site and have had my eyes opened REALLY wide!! I have been having ‘most’ ot the symptoms stated herein and planning to discuss many of the symptoms others have made. Am glad I found this site before talking with him, as I understand so much more about my condition(undiagnosed) thinking all along it must be damage from long term low dose Xanax and mega doses of Gabapentin! Have reduced Gabapentin by 2/3 (to 400mg1xper 4 hrs.) and want to get off more meds that I think are doing me more harm than good. The doctor who I’ve been seeing for 25 yrs. is the one prescribing my meds. I am seeing another doctor (unknowing to my present doctor) for another opinion, a neurologist this week. I am seeking help to get better, not more of the same! I will update as soon as I get the second opinion and discuss with my regular doctor. Going to be interesting!
I developed right ear pain with severe pressure and fullness. Over seven years I saw numerous specialists and completed multiple testing and imaging, all results have been negative. None of the many specialists I saw felt my low dose of Clonazepam was contributing to my bizarre ear symptoms. I weaned off the Benzo and after 7 weeks of being off the Benzo, my symptoms have not changed. Would it be expected I should have improved symptoms by now or does recovery happen very slowly, as in many months?
Can anyone comment?
I developed P.O.T.S after 30 years of my doctors prescribing daily benzo. I even asked several times over the years to ” see if I could come off my benzo”. No one wanted to deal with that so, they just kept me on, telling me it was working for me. Now, every 2 weeks I make another swipe off the edge of my pill with an Emery board. Eventually, the pill will be swipped away. Until then, Ill take thoughts and prayers. Thank you.
Darla you’ve got my thoughts and prayers for I developed POTS and MCAS as well! You’re doing the right thing and you will get better! It’s changed my life being off of Ativan.
Yes I have had same ear stuff on benzo s 8:years off for over three ear stuff gone but dealing with other residual effects better and better every year stay off drugs
I experienced both hyperacusis and tinnitus both of which have improved since being off of Ativan
I can…tinnitus is common complaint in benzodiazapene withdrawl, I imagine this to be a varient. I am currently doing cessation of clonazepam and OMG does my head and ears hurt and ring! From what I have read, this is very common, you must give it time, and above all, no backslideing!
Suzy, Have you had any improvement in your ear ?
No
Please email me frangelo@icloud.com I have the same
15 years straight of klonopin and 12 years of 8mg – 16mg of Suboxone – years off everything now . Still horrendous but slightly better. I apologize in advance if my words are discouraging
I have been on serapax for 15 years + i have so many unexplained symptoms
I get regular ear pain at one stage i saw ear specialist that could see nothing. Every test doctors do to try to explain or fix symptoms is no use as all tests come back borderline or normal. I could talk about all my symptoms but list is too long. Doctors run a few tests and then say you must be depressed. I just keep getting more sick each day and I cannot get a Doctor to believe me as he cannot see it on a test. Been a long 20 years
And i get frequent seizures and shakes.
It is not unusual for symptoms to persistent after discontinuing clonazapam. I have experienced this myself and have tried several times to get off but it has been in a rapid detox center. Nobody really understands when you report the awful symptoms of withdrawal. Especially doctors!
Please just make sure you have someone who is well-versed in tapering someone off of benzos for it can be extremely dangerous if not deadly. Check out the CNN benzo documentary on YouTube.
I was on .25 mg of Xanax for my anxiety. I only needed to take a pill before starting work, or being around big crowds of people. I was on it for a little over a year. Then bam… August 2020 woke up numb on my left side. Thought it was a stroke. I’ve had 14 MRI’s and neurologist thinks it’s MS. I wonder if it’s from Xanax withdrawal. I go for my spinal tap in 2 weeks
Hi Jen,
Just read your comment. How are you feeling now? What did you test result from your spinal tap say?
Hello,
I have been on Clonazepam since 2013 (6 years).
I’m an ex-Paramedic that has been in a fatal car crash (passenger)
and run over and crushed by a truck.
I suffer from PTSD and hve terrible anxiety
which I had long before Clonazepam.
I would binge drink when my anxiety was bad; I have not drank since I
stated Clonazepam.
My initial dose was 1.5mg a day;
I tapered to .5mg/day easily and take a before bed maintenance dose of .25mg.
I was always scared to go to be because of nightmares, and loneliness;
my .25mg Clonazepam at bed times has effectively helped my falling asleep.
A low dose of Cannabis oil helps keep my nightmares at bay.
Medication must be looked at in terms of potency and affect.
Micro dosing is also becoming very popular among Psychiatrists in the know.
At one time I was taking 100mg of Prozac to control my anxiety; I now take
prozac in a liquid at 8mg/ml with the same affect.
Anxiety is an insatiable beast; panic is truly debilitating.
CBT, CPT therapy may help, Benzos can be your water wings
while the therapy process plays out.
Sometimes it truly is
“As good as it gets”
we need to learn a society to embrace the suck.
Benzos can be problematic…but they can also
be helpful and have been for many.
Hello. I was prescribed Klonopin for almost fifteen years at two mgs three times a day. I began working with my new physician months ago to taper down. At the end of September I was down to 1milligram a day. I stopped totally and a horrible month (October 2019) of Sweating/Heart Racing/Shaking-Trembling/Head ringing/It was basically Delirium Tremons. I actually thought my heart was going to stop on a certain day when my pulse was 180 ALL DAY LONG. I am finally out of the withdraw yet now my memory is so messed up I feel like the past 10+ years was a dream! I have forgotten new friendships. It’s the freakiest thing I have ever gone through! I hope my memory improves. What a HORRIBLE HORRIBLE DRUG!
I am sorry. What you have wrote here has really resonated with me.. The withdrawals are absolutely debilitating and there’s not much help is what I have learned..
You are fooling yourself and asking others to use benzos as Russian roulette!! Stick with the CBD oil and ask your cardiologist about propranolol used off label for anxiety. Benzo’s and benzo withdrawal, can kill people. I thought they helped me and I couldn’t live without them for over 20 years!!! Now I realize they almost killed me… even at .5 mg PRN.
CBD put me in the hospital with repeating panic attacks and bladder emptying. I have been on clonazepam for over ten years, have tried to taper a few times unsuccessfully. Doctor prescribed more clonazepam plus Xanax to control panic. I also take Seroquel daily. I have bipolar disorder and am tied to these drugs in a horrible way. I was diagnosed with MS a few years ago; the neurologists were so inept and also mean I stopped seeing them as I don’t believe I have MS. I believe I have a brain damaged by long term benzo use. I am now attempting my fifth taper without doctor supervision as she believes lifelong clonazepam use is fine. Yes, I’m working on replacing my psychiatrist. My hope is that my alleged MS symptoms will dissipate and I can have a life again where I can work and think and not be slain by fatigue daily. Good luck to all of us but, yo- CBD is not a cure-all and was dangerous for me. Caused the worst panic events of my life- I was having 40 or more panic attacks consecutively for days. Sadly, only Xanax and extra Seroquel helped quash them. The CBD made the whole thing happen.
I started tapering my 3mg of klonopin when I started displaying symptoms of interstitial cystitis after months of suffering what I thought was a UTI. I won’t lie I did need it at the time when it was RXd. Once I felt better and I was able to leave the house again I started tapering the rest. I found that magnesium helps the RLS and icy hot does to, I also started taking B complex and Potassium. I am vitamin deficient though and my body doesn’t properly absorb things from what I eat. It wasn’t easy, but I slept when I needed to, and I allowed myself to do nothing when my body was screaming at me that it couldn’t. It has been a month since my last dose and I still get horrible body fatigue. I can’t clean my house without taking a break and it’s not that big. My point is when you are withdrawing and going through the taper process be gentle on yourself and take the time your body needs to recover which includes as much sleep as your body wants so it can repair itself. If your taper causes anxiety like mine did never forget to breath and seperate yourself if need be.
I also suffer from interstitial cystitis. I am 100 days off valium, one of the most annoying symptoms I have gotten for the last 2 months is frequent urination. Are you experiencing this as well? I was just wondering as I’ve wondered whether I got this because my bladder is already sensitive. I sleep 2 hrs, pee, sleep 2 hrs, pee. It is so frustrating. Thank you for your post. Hope all is going well for you
Same issue bladder has bee.n one of my worst along with frequency I get pain in lower back ect I could go on and on I’m off benzos 34 months still suffering brief periods of feeling my baseline good .Scared I have ruined my body for life
I had frequent urination too for a long time, going to the bathroom every fifteen minutes it seemed all day long. At night I would have to get up 8-10 times to pee. Always had a full achy feeling in my bladder. That went on during my entire rapid taper (from 1mg klon, 16 months use) and for months afterward, until the worst of the anxiety started to calm down. I chalked it up to the anxiety and high cortisol. It eventually went away.
Some other symptoms are still hanging in at 2 years out, though most have gone away. Severe fatigue, crushing really, was the worst after about at the one year mark and though it’s getting better, it’s still hobbling me. A few dozen other severe symptoms have healed. It just took a while.
Wishing health and peace for us all. No one should have to suffer this hell.
I’m just now reading your comment – I am having terrible urinary symptoms too. I’m trying to taper off of clonazepam. How did you taper off? I’m currently taking .125 mg daily, have been on this dose for a few weeks. I don’t know what my next step should be. Please help?
Are you officially off the klonopin
Hi have same issues bladder has been a nightmare also after intercourse pain is worse bladder ect jaw hurt neck legs feet hands sore and more been off 34 months still sick will I ever get better
How can one withdraw if the half-life of the drug (in my case .50 of Klonopin) is days? I take .25 mg every 12 hours and notice in the morning, especially, my heart races until I take the drug. I also notice that I have aches and pains when drinking a lot of caffeine, which is known to interfere with Klonopin. Before alarming individuals, why not ask them to see their doctors, and to try a blood test to see how much Klonopin is in their systems? There are people who are very self-centered and self-focused who will read all of these supposed withdrawal symptoms and have them all. In other words, mentally ill people taking these benzos could be hypochondriacs who need medical supervision whether they take aspirin or any drug. You can’t wholesale diagnose people without knowing every drug, substance, etc. that they take and how they interact. I drink far too much caffeine, so I know I am dependent on that, so if I have withdrawal, is it Klonopin or caffeine? Or, am I also addicted to the Toprol I take for high blood pressure? I doubt anyone knows. I have tapered from .75 mg to .5 mg of Klonopin and would like to taper further. I am betting I can do so, even after 10 years at .5 mg. I will do so with medical help, but I am guessing that I won’t die, even after reading all the symptoms I can have while doing so. Each person is different, and I hate to be blunt, but telling a bunch of mentally ill people every symptom he/she might have is unhelpful. Just leave that to the medical doctor.
I was on the clonazepam .5mg twice a day for 15 years. Stopped cold turkey to try to live again. I acted just like you did to articles like these. I had no idea they affected me so bad. Once a few months passed my head cleared up enough to realize how much of my life was lost thinking I had anxiety. I was diagnosed by a specialist in Autism, she has a phD and has been working with this condition for 35 years. I have high functioning autism, its hard to spot. My point is, trust your doc and ask the right questions. If you feel concerned your mental state is slipping then let them know and tell them your fears. A real doctor of any field will respect that, if they don’t you need a new doctor. This information is important and I wish I had it a long time ago. I am back to planet Earth and I am dealing with being on the spectrum now and getting results. I will never be better it’s OK but if I had this info I would have been me at least, not a zombie who thought he was loosing his mind, and that’s not the half of what it does to me.
Trusting your doctor can be dangerous. My friend wanted to reduce her medications because she is on so much already for an autoimmune disorder. The doctor basically “tapered” her in about 3 days. She has had a hellish 3 months. Barely able to work. Not sleeping much, can’t eat much because the autoimmune disorder is so messed up. Do your own extensive research before you begin withdrawal. The doctors who prescribed these drugs did not do a few-week prescription. And other doctors just kept refilling for 2 and a half years. Doctors are not educated about these drugs, yet they write the scripts. This misery is doctor-induced suffering. The medical professions are hurting people with their ignorance.
Wow, I must say that I actually couldn’t even finish reading your original comment above…this is exactly the stigma that has plagued people who suffer with “mental illness” face daily. I just read the above symptoms because I’ve been sent for a gazillion tests because of some of those things listed above being tested for and retested because much of healthcare has become just another business decision and not about caring for the patient as much as it may have once been. I also take Toprol for a heart rhythm problem and to prevent heart failure. Toprol isn’t addictive but you should never stop taking a heart or blood pressure medicine without talking to your doctor. I at one point last fall when I finished my Klonopin taper that the side effects I began to experience such as severe sneezing even in the middle of the night at 2a.m. and diarrhea that’s been severe since I was on it just about were due to the continued Toprol which the latter is a side effect of but a rather rare one I’m told. When I was finally tapered off the Toprol as well I had horrific side effects from the benzo withdraws ongoing after I’d finished. I must now say that I did a bad thing at the end of my taper and cut out a 1/4 of a mg all at once and I think my body wasn’t adjusted to take that large of a reduction as I’d been slowly tapering just a tiny amount ever few weeks or so when I’d stop having muscle spasms and twisting toes and feet. But then did the last bit in too much of a hurry and too excited about it and then went off my heart medicine by taper after contacting my doctor and pharmacist about the best way to do it and I had the worst palpitations like someone was boxing in my chest day and night which woke me up at times. I also was only sleeping about 3-4 hrs a night all summer and by fall when this occurred my body was in a state of exhaustion that I didn’t realize and tried to keep myself going constantly. My entire body freaked out and my muscles rebelled and began spasming pulling my joints out. My knees slipped, my elbow was separated, my shoulders both dislocated, my hips hurt and finally my back gave out too and I started having severe long migraines with flashing lights and spots and racing heart and was put back on the Toprol and then my Dad was murdered by a sibling and my grandson passed away and my service dog passed and now I’m tapering and down from 3 mg a day a yr ago to .5 mg. I’ve had severe depression with this because of the side effects and the way it changes your thinking and especially when you get caught in the health care rut and are being sent to one specialist after another and being told you have a list of things wrong the covers 2 pages at your checkout summary. I finally asked my doctor…”Don’t you think that maybe this 2 page list of things that have been wrong with me and keeps growing as I’ve aged could actually all go under the heading of one problem which is causing all of them?” That didn’t go over well and they made me wait 4 1/2 days to refill my prescription for the Klonopin telling me they’d called it in but I never picked it up so it was put back. But the pharmacy said it wouldn’t happen that way that the prescriptions are good for 6months here and they’d have called me to tell me it was ready. So there is retaliation from providers who get aggravated when you aren’t on the same page as them as far as taking a bunch of meds. I wanted to take a little medicine as I would have to. I began over 2yrs ago last Jan of 2017 to get off all of the meds I was on except absolutely necessary. My doctors had me on upwards of 30+ pills per day. From Gabapentin at huge doses, to opioids at huge doses and I cut them all out. I was on phenergan, hydroxyzine, gabapentin, 140 mg of opiates, Benzo’s, muscle relaxants, then the guy gave me samples of shift worker meds to help me be more awake, but then also added sleeping meds and valium along with the other Benzo’s I was already on. Plus a ton of other crazy meds. The gabapentin was very difficult to stop but I did it. The opiates were the easiest to me, with the Benzo’s being the most dangerous by far. I’ve been on them since I was a child off and on and on them now for many many years. I’ve gotten severe dystonia had to rush to the ER to stop it before it stopped my breathing. Ive had to do cold detox off Benzo’s from 10 mg a day of Ativan which made me have hallucinations that were so real I actually sat on my bed all night with my shower running because I thought I had refugees from the Kosovos war hiding in my house and thought I allowed them to shower but when they didn’t come back out hours later and I knocked on the door to no answer I assumed they went thru the ceiling into the attic somehow like Anne Frank. Now that is the most frightening thing I ever had happen and it went on for weeks. I was put in a mental facility 3hrs from my home and the records say the patient is literally climbing the walls or trying to. When they let me out of the little room finally I shook so badly for weeks and had to stay for 2 months and couldn’t get back home afterwards. I was made fun of by the ambulance people while I was like that and they were transporting me. Because you see as long as some one would tell me that’s not real I would be able to understand that but if someone didn’t and acted like my sights and thoughts were really happening is was even more terrifying. I tried to jump out of a truck while being brought to the ER because I thought the person driving was someone else trying to kill me. I saw a man rape a nurse but it never actually happened. It was like being in a war but only you know it in your head. You have no uniform or medals for making it. No one knows what I saw, smelled, felt, said, did…only me and a few people I’ve told but I remember all of it as if it were real. I was hog tied to a tree branch and raped in front of my son and his friends by hordes of people fleeing down my dirt road with donkey’s. I’m sure you’d label me as one of those mentally ill people but I could be you and you could be me. Your on the same kind of meds and this can and does happen to people all the time and it’s horrible and it stays with you at least it has stayed with me and I doubt I’ll ever forget those sights and sounds. The funny part was I had watched a movie a long time ago “I’m dancing as fast as I can” with Shirley MacLane and I knew that it’d be about three days before I’d begin to hallucinate but I didn’t know what to do about it. You can’t make someone give you medicine to stop what’s happening. The funny thing was when I got home and when to fill the rest of my taper meds there was a full prescription the bad doctor had called in to cover his butt after refusing to refill it after I’d been on it for a long time. It was hard because the pharmacist tried to give it to me and I wanted it still. I cried everyday for months when it was stopped. I had to give my taper meds to someone else to give me because I was hurting so bad still from the withdrawal. Even when it was done it went on feeling disconnected from myself. Like I wanted to crawl out of my shell of a self and back into my old body before benzo life. It’s hell. I agree whole heartedly if you can and are smart enough with enough help or control to taper yourself which I’ve been doing this time as I said I really think it should be up to the patient until the doctors can listen to them and have the time to deal with it and the knowledge to. I’m grateful for that list above. I can see many things that my providers had me do or planned to do and at least I can go into it with open eyes and decide whether this is benzo related or a different problem. I didn’t look at it to say “Oh wait I have that I think or google the actual diseases and read the symptoms but instead to look to see what has been done to me or told to me that is on that list” and no not all of those things are a problem for me but I’ve been given plenty of diagnoses that are up there and it makes me have hope that I don’t have those things but maybe this can get better because I am tapering and going to slowly do it this time until I am successful! Life is where it’s at and it’s not in a pill bottle always sometimes you have to do hard work mentally, physically even if it includes suffering a bit. It is worth a better life! I hope your situation gets better. Don’t be negative towards yourself and think positive and remember what your end goal is and keep plugging away towards it. You may have to take a step back occasionally but as long as you keep moving forward mentally and physically things will work out. Keep your eye on the prize. Try not to judge others because just because your on a mental health med may make someone else judge you too. Which really isn’t nice and we need a lot more kindness and love in this world. We should look around us and look outside ourselves to find fulfillment. Kindness begets kindness.
Bonnie- how are you doing now?
Just leave that to the medical doctor?
I DID! Not one but many, and not a single doctor in over a decade spoke to me regarding how clonazepam is never to be used for a long period of time. Toprol? A Beta blocker will never cause physical addiction – perhaps mental if you choose to feel so. I have been taking a beta blocker for almost 37 years and I have stopped it abruptly to try a calcium channel blocker or Ace inhibitor under a dr’s supervision. The problem with today’s society is exactly that – placing doctors high up like infallible gods. My previous Dr is now facing civil action as he prescribed me other medications which have caused me irreversible physical harm. I now have to give myself injections for various things a normal body makes yet mine no longer does due to the medications/dosages.
You are correct. My friend now takes nothing a doctor says as truth until she does research. We hope she will be normal again, but the withdrawal, which was done incorrectly, never should have been this horrible. I told her the other day she has grounds for a lawsuit. She said she doesn’t have the energy.
She said she doesn’t have the energy?..
Yes I can totally relate. I wanted to call 911 during the hellish withdrawal but didn’t because my front door was locked and I just couldn’t leave the bed to unlock it LOL !
You are actually attempting to compare caffeine to a benzo?You need to really study benzodiazepines and what they do to the body,before you make such idiotic comments…..
That was extremely judgemental, preachy, and unhelpful.
I agree, it is unhelpful, after reading all this it scares me to try again to get off clonazapam,
I hear nothing positive on here, at all except fear mongering.I’ve been through so much trauma in the past few years I don’t think I need to go through more trauma getting off this drug. I have bladder issues to getting up to pee several times a night but I also have diabetes, that’s the reason I went on Clonazapam for the anxiety diabetes can cause.
But how can you be sure, you can’t, I was told years ago way before Clonazapam that I have Interistial cycitis, and it has flared up because of the trauma I have been through, it’s very painful, and it can cause you to pee a lot to. So who knows for sure what’s causing what. Did all the people from back in the 60’s have these problems from benzodiazepines, maybe there should be research on this. And so what do you do for anxiety once your off the benzodiazepine, I go to therapy and it hasn’t really helped my anxiety with chronic illness. Also Iwould like to know what all you people were put on a benzodiazepine for.
I would like to know does life ever feel ‘REAL’, will the alien state of mind go away, will I ever feel like I did when I was a shy 16yr old who found a false sense of well being in mums serapax? And why the over prescribing of these pill till goes on??? I abused them for 17yrs then settled down on 4 5mg valium daily until I had to change something (coz I kicked poly Illicit drug use) so I asked my doc to change something and he now gives me 2 5mg diaz and 2 15mg oxaz. I’m near 42yr old and now I just want to know is there ever going to be a comfortable quality life???
I would like to know if I am on the extended release Xanax 1mg twice a day if there is hope of coming off safely since the Ashton manual doesn’t cover this. I have been on a benzo for 27 years. I have been on this particular dose for 9 years.
I’m in the same situation & nervous about that. All I can think of is find a provider & taper down on the extended release then to regular Xanax. Possibly crush the extended release & weigh/ micro dose if needed. Much love to you
I was on Ativan 1 mg and time released Xanax for 4 years. I weaned off the Ativan first. It took me 3 months. Then it was time to taper the time released Xanax. I was on 1 mg ER. The Dr. switched me to diazepam. I did a very slow taper. In the Ashton Manuel it talks of switching to diazepam to make it easier. It’s not been easy by any means but I’m now nearly 75 days off benzo’s. I have a long way to go and I pray I survive. A lot of dizziness and heart racing. Some days I barley can function or do anything. I am 65 and I pray I can one day feel normal again! What a nightmare!
U could try to lower your dosage …but It’s PURE TORTURE trying to Tapper!! 3 years bedridden hallucinating hiding in a dark room unable to function!!! I think u are stuck but u could find out for yourself just by seeing how it feels when u don’t take the 2nd dose!!! I wouldn’t do all over again if I had to!
I, too am 65. Went cold turkey off 25 yrs of 2mg Xanax. I am now entering my 7th month of nothing. Had to change doctors since my regular Dr tried to ween me too fast! I freaked and started daily use of 2mg Xanax bars. Old Dr also had me on 30mgs daily of methadone pills. Quit that as well. They say Done is horrible to stop cold turkey. And it was hellish for a month, but I’m over that. A cakewalk compared to what has been going on from the Xanax withdrawals! And I am now beginning to understand what protracted symptoms are. I have gotten much worse in last month. My new Dr is learning much from me, though he will not put me on a taper. Now I have to taper off the gabapentin he has had me on since I first started seeing him. I’m in really bad shape. Physically & mentally. Feel like I have pressure on every sq in of my body pulling me down. Gravity seems intensified pulling me down to grave! And I think that because it is real to me. I have had suicidal thoughts because of this and the extreme tinnitus. Drives one insane. I know I would never act on the thought. And yes, I have gone through every test imagined. So far, I am told I am healthy, all tests negative. I have been on my bed for the last 6 mos, except to get something to eat. Have not showered since sometime in January. This is so debilitating it makes every little task a miserable chore. I am lucky my older brother and his wife have let me me stay with them as I go through this nightmare, making me dinner each night, but I am on my own for lunch and breakfast. Going to the store is always a challenge. I drive if I feel up to it, knowing full well I cant and I’m endangering other people and myself, but I’ve also walked to a closer store and paid ridiculously high prices because I couldn’t and shouldn’t drive. Reading these comments is good knowing I am not alone, yet they are depressing as I now know that even when I hit the 1yr mark of being benzo free, I expect nothing to change. The dry mouth, balance impairment, loss of taste & smell, the weird feeling like my skin is rubber, smelling a rubber burning when I do smell. Food tastes bland, itchiness, severe leg kicking and general muscle twitches, numbness in left hand and legs, hypersensitive to light & sounds, everything moving from right to left when I try to sleep, and very little sleep if at all. Having difficulty just typing & texting. How can anyone keep a job with extreme withdrawals? I really don’t want to be put on any benzos and then weaned, yet I have no quality of life. No life at all. Each day I ask “Can it get any worse?” and it does get worse! I am fearful of brain damage as well. What do I do? Any suggestions?
I have that dry mouth. Cut out sugar caffeine and alcohol and don’t do cardio that raises your heart rate over 125 bpm. This gives me bad reactions. Do moderate exercise if you can. Anything that makes your heart race will rev up symptoms like insomnia and tinnitus and that horrid dry mouth.
The real question is, why are millions of people prescribed these drugs. The doctors who hand out these medications like candy should be held accountable. If you do not know exactly how these medications will work on people, then you have no right to prescribe them to anyone. These medications are constantly prescribed to people who have addiction problems with drugs, they are sold like candy at methadone clinics, and other treatment clinics. Has to be stopped, we are losing precious lives. Crimes are being committed by people who do not know what they are doing, and have no control over there actions, most people who are prescribed these meds, cannot manage there own medications, or dosage, because they are too screwed up to be responsible.
If one reaches tolerance, then is it not fair to say that the Klonopin is the equivalent of a sugar pill? That is if I have taken .5 mg for 10 years and the drug no longer works, isn’t that the same as not taking it, and that symptoms I had prior to taking my first dose of Klonopin would still be present? If tolerance exists, and I never raise the therapeutic level over 10 years, then, I am taking essentially nothing. I call baloney on anyone who says that tolerance, which now means that the drug no longer has ANY therapeutic effect, would mean no symptoms. The drug no longer works! An analogy would be someone whose chemotherapy no longer works, either. Usually, that means new chemo drugs or cessation of chemo. Tolerance is tolerance. Physical dependence is another matter. Each person is different and only a qualified medical professional can assess, not armchair quarterbacks or some of these very self-absorbed types who think they have every disease known to humanity. Half of these folks probably have a mental illness that makes them acutely self-absorbed, and they will blame every symptom they have on Klonopin. Where’s the medical evidence?
Jonathan, I was on valium for 21 years then switched to Klonopin for 14 years. During those years I also defended the drug, until I became extremely ill and now have many life changing complications I never had before the drugs.
The medical community have long used benzodiazepines to help with alcohol withdrawal because they work on the same receptors as the benzo’s. And alcohol use cause all the same hell as benzo’s. I am sure you would agree with what alcohol does. And like benzo’s alcohol takes many years to do its damage. In some it only takes a few months and in others many years.
While the drug is on board it masks the actual damage it is doing – because they are well noted for masking pain. Stop taking them and see what happens. You can’t say you will be okay until you actually stop 100%. I hope you never experience the hell that others are in.
I hope he does lol.
You’re pretty much an asshole.
The person who wrote this wasnt “armchair quarterbacking amything.”
if anything it is helping many!
You’re one of the lunatics you speak of.
Only a psycho could get angry over this benzodiazepine info. Or in your case a dickhead.
Bravo couldn’t agree more
Amen. Hopefully life will educate you. Once you’re indoctrinated into the underworld of HELL these evil drugs trap you into… you’ll understand … while your muscles, memory, and ability to function deteriorate….. you’ll understand. This shit could be used to bring nations to their knees… just dose the water for 4-8 weeks and then abruptly stop. All hell will break loose.
Are You some stupid ass inept doctor,Jonathan or do you just really love Your benzos?
I’m wondering the same thing.
I agree. We need to all start a class action lawsuit!
Jon: comment not true or helpful, sugar pill my ass, you have constructed many illogical arguments herein. Why? Verbal garebage, all. You come off seeming to be on a superiority complex, like you are so much better/smarter than everyone else, and everyone else is a pill junckie, yet your drug use is justified, in your own mind, due to your very own sugar pill analogy. That is some ill logic. It is circular reasoning, wherein the means justify the ends.
To the author – You say, “So, if a patient develops tolerance to their benzodiazepine without increasing the dosage, tolerance withdrawal symptoms will emerge.”
Got any evidence of that?
It’s well-known that once tolerance sets in, RECURRENCE of any original underlying disorder will return (in fact, that original underlying disorder might have even gotten worse as part of its natural course, but the symptoms were temporarily reduced while the benzodiazepine still had some efficacy).
And it’s also well-known that there can be adverse effects to benzodiazepines.
But asserting that “withdrawal” sets in while one is still taking a steady dose of a benzodiazepine is a totally different phenomenon – and one which, despite extensive research, I’ve never seen one scrap of evidence. If you have any, I’d be very interested in reviewing it.
I’ve had personal correspondence with two of the experts you cited above (Dr. Heather Ashton and Dr. Malcolm Lader), on this notion of “tolerance withdrawal” (a term which I believe Dr.Ashton first coined). I asked them if, in their extensive clinical experience, they had ever had a patient who experienced true “withdrawal symptoms” while on a steady dosage of a benzodiazepine (not “interdose withdrawal” – that’s well-understood, and not “adverse effects” – those are known about, and not “recurrence of the original disorder” – it’s also well understood that once tolerance itself sets in, the benzo has lost its efficacy, and whatever it was easing has re-emerged). But “tolerance withdrawal” – true,novel withdrawal symptoms arising while still on a steady dosage? That’s a phenomenon that I cannot find alluded to ANYWHERE in the medical literature.
Their answers were 100% opposite:
When I asked Heather Ashton if she had ever seen this clinically, she replied, “Yes, I saw this in every single patient I ever treated in my clinic.”
When I asked Malcolm Lader, he replied, “No, I have never seen this in ANY patient – ever.”
So, is Dr. Lader an idiot, or is Heather Ashton being imprecise in her notion of “tolerance withdrawal” and seeing it in 100% of patients on benzos? I wonder if she might have a bit of the “I have a hammer, and everything is starting to look like a nail” syndrome?
Interestingly, Dr. Lader had never alluded to “tolerance withdrawal” in any of his published articles prior to my correspondence with him – but after it, in several later articles, he did say, in effect, “in some patients, they may begin to show withdrawal symptoms without actually withdrawing from their benzodiazepine.” He’s never cited a single case though, and my guess is that he didn’t want to appear to contradict Dr. Ashton’s assertion in public – since they’re allies in a very important crusade to educate doctors about the real risks of benzos.
But when first asked a clear question about whether he had seen this in his VERY extensive clinical practice before his retirement, he simply had not.
It’s a vital question. With millions of people on long-term benzos, clinical decisions about their relative risk/reward have to be made. Assessments of any new symptoms arising have to be made (new problem that needs treatment, or “tolerance withdrawal” that REQUIRES that the patient be tapered off of their benzo – even if they’re elderly and might be thrown into a severe, protracted withdrawal syndrome for the remainder of their years when, in fact, it’s not their benzo at all that is causing this new symptom?)
Dr. Lader did later say one thing that seems wise – that when a patient is having a very prolonged benzo withdrawal, it’s genuinely difficult to really know if the symptoms are due to the withdrawal, or due to the original disorder having naturally progressed over time, or due to an entirely new disorder.
Adding a notion like “tolerance withdrawal” into the mix seems to only complicate the issues – and with no apparent data or clinical observations to justify the notion. If you have any, please share. Thanks!
Jeremy makes mportant points. I am sure that there is more unpleasantness to be uncovered.
I’d like to talk about one of his points. He asks how to differentiate between symptoms of a mental condition (for which the drug was prescribed) from symptoms of a withdrawal syndrome that he belives is not proven to exist.
This one is simple. The symptoms of benzo withdrawal or the postulated tolerance withdrawal are not those of a former “underlying condition”. The symptoms, both physical and emotional, of a benzo withdrawal include many issues that had not existed before the benzo prescription.
This fact is clear in every case of benzo-injury.The benzo-injured are experiencing something very different from any former compliant.
hi, J,
I’ve seen that often when I was involved with a huge online benzo withdrawal support group (which sadly got entirely deleted – 20 years worth of case studies).
I recall one classic case of what you describe – an elderly woman was prescribed Valium for blepherospasm (eye twitching), and took it for 6 months straight. Then her doctor withdrew her over 4 weeks, at which point she developed classic panic attacks – which she had never remotely had before.
So yes, during withdrawal, entirely new symptoms, unlike the pre-benzo symptoms, emerge. This is well known.
But while I was a part of this large group, I questioned the constant references that people (especially the leaders) kept making to “tolerance withdrawal”, which is differentiated from “withdrawal”. “Withdrawal” occurs once a dosage is lessened (or horribly, ceased abruptly). “Tolerance withdrawal” is defined as “withdrawal occurring without lowering dosage of a continuously-taken benzo”.
(one side note – it gets even trickier because – are new symptoms which come on during uninterrupted benzo use “side effects” or “tolerance withdrawal”? – important distinction, cause-wise, and treatment-wise).
Anyway – the leaders of this group were often annoyed by my questioning of this concept they were pushing, but one was intrigued enough to have the conversation. And because that old group site was so well archived, once you had one person’s handle, you could read every conversation they were in – so closely follow their entire dialogue and case history. So he finally listed 10 names, and said “Read these cases – 10 cases of “tolerance withdrawal, as plain as day.”
I read all 10 (some which had hundreds of posts). In EVERY SINGLE CASE – it was “interdose withdrawal” – another concept which is well understood, but is NOT “tolerance withdrawal”. In each case the person began to experience genuine withdrawal symptoms, but each time they did, it was when they “skipped a few days of taking my Klonopin because my doctor was on vacation and misssed my refill” – or something similar. Or people who were taking Xanax (with its extremely short half life) once a day, and getting withdrawal symptoms before each next dose.
There was not one case in which someone had been on a steady, continuous dosage, and began developing “withdrawal symptoms”.
In short, although I’ve searched, and asked, I’ve never seen a case in which someone developed genuine withdrawal – without actually withdrawing at all – which is the definition of “tolerance withdrawal”.
One other note – I’d mentioned that one tricky thing is in distinguishing “tolerance withdrawal” from “side effects”. This can actually be determined very easily – just like one can determine whether a new symptom which arise during a taper off is a “withdrawal symptom” or a “side effect”. The test is simple – a one-time updose. For example, if one is tapering off and is having unpleasant symptoms and wants to know if it’s caused by “withdrawal” or if it is a “side effect”, if their usual dosage at this point is, say, 5 mg. of Valium 3 times per day, for one dose only that day, take 10 or 15 mg. If the symptom gets better, it’s a withdrawal symptom (although that doesn’t mean the solution is “take more Valium continuously – it just shows that reinstating the drug for one dose eases it, which indicates it’s a true withdrawal symptom). If the symptom gets worse, that’s a good indication that it’s an unpleasant “side effect”, and adds one more good reason to carefully get off the drug – it has nasty side effects for that individual.
As far as new symptoms emerging during steady benzo use being labeled “Withdrawal” or “tolerance withdrawal” that also gets tricky. (as can new symptoms during tapering off). I have a unique distinction of possibly being the only person to have read a Heather Ashton article before agreeing with my doctors to continue taking Valium once I found it to be super-effective. I read tons literature on the debate of “safe” versus “withdrawal can be horrid” – and Dr. Ashton’s were the strongest warnings. But….
Unfortunately the one article I’d found from her was from the 1980s (her articles from the 1990s are much better written and documented). In the one I read, the “strongest evidence” of protracted withdrawal syndromes was that some patients developed moderate tinnitus during their withdrawal, which was still present years later.
15 years before I ever touched a benzo, out of the blue, I suddenly developed profound tinnitus while sleeping – and it has never gone away. I found support groups and read up on tinnitus, and learned that this happens to millions of people every year – without them taking any kind of drug, or even noise exposure – it just comes out of the blue and stays forever.
So when I read Dr. Ashton reporting that a small percentage of people developed moderate tinnitus after tapering off of their benzo, I wasn’t very worried, because the percentage of patients was roughly the same as the percentage of people who never touched a benzo, who also developed moderate to severe tinnitus in the same time frame.
It’s tricky, but important, to be able to distinguish what’s what.
In my case, it’s been a dilemma because for the 15 months that I first took Valium continuously, I had zero side effects, and just relief of strong muscle tension (a chronic problem for decades at that time), but not complete relief, so I wanted to taper off to try something different. It was only during my taper off (actually using the Ashton Manual, but towards the faster pace – reducing my dosage by 1 mg/day each week) that I developed MUCH stronger symptoms. I followed Dr. Ashton’s advice, to “temporarily hold your dosage until the symptoms subside, and then resume tapering, but do not go backwards”.
That was 12 years ago. Those worse symptoms have never yet subsided.
I’ve resisted updosing (although “one-time updose tests” almost eliminate them for 6 hours or so, so I know a higher dose would ease them, but don’t know for how long that would work before greater tolerance set in and rendered the new, higher dosage ineffective).
But since these worse symptoms have never yet resolved, I’m very leery of resuming a taper off, as my personal experience has been “taking the Valium was fine- but lowering the dose has resulted in 12 years of life-changing symptoms”, so as much as it would be nice to get off, I don’t want to dive further into a worse protracted withdrawal than what I already have.
Quite the dilemma. And not easy to sort out, which is why I’ve ended up reading everything in the medical literature on benzo withdrawal that I could find. No simple answers….
Jeremy, can I contact you?
I was forced to go cold turkey off of benzos and I truly believed at that time that I was going to die!!!!It was the most horrific thing I have ever experienced and was very traumatic…..I was quite surprised at what it made me feel!!!
How can I find a doctor who will help me with this? Is there anyone nationally or any program..? Or am I on my own? I’m terrified. Years of once a day Xanax and I’ve developed terrible pain and flu-like symptoms. Chased every diagnosis under the sun…looks like this is my answer…where to start?
You need to get educated about neural pathways neural channels in particular gaba A receptors subtypes A B C D E benzos bind to these and body a d brain. Habituate which means body no longer performs very important functions By the way theses meds longterm affect whole body systems so some people will be fine for years others not fine at all This is where genetics come into play .I knowyself aftervyears of use I began to experience weird things like bladder issues female issues by the way doctors never found anything my hips hurt ect while on benzo jackass Then when I tapered ect well hell pure hell .You know Jack squat about this issue .When theses receptors are damaged body systems do not function normally calcium potassium channels do not function properly nothing does that is connected to a gaba receptor which are thousands everywhere in body IDOT
I just stumbled upon an article about the dangers of benzos with focus on Xanax and there were other links so one was saying that long time users of Xanax or abusers of it may have permanent brain damage and may mimic many symptoms and diseases but your never properly diagnosed or if diagnosed with an illness you are being subjected to unnecessary and invasive test and given medication you don’t actually need all the while never feeling better so you continue to see specialist searching for answers. My OB said I was in early menopause and all my hormones are low and out of wack. I told him I’ve become a different person the last 6 years or so and I never feel good, always tired and fatigued. I suffer with mental illness and have since I was a teen. Mainly depression, suicide attempts but the last 10 years or more my mental health got worse. I’ve been diagnosed with depression, anxiety disorder, panic attacks, ptsd from childhood trauma and domestic abuse, personality disorder. I’m on disability for these and the last 2 to 3 years my anxiety gets so bad for no reason or if I have an appt or an event to go to or simply want to go out to eat with family or go get groceries it gets so bad 90% of the time I bail, decline, reschedule or miss appts. I feel safest and most calm at home. I used to be a go getter, always busy doing something, never had problems in social situations and I’ve been diagnosed with SVT, hypertension, type 2 diabetes, hep c and early onset menopause. I’m 42 years old and life is passing me by. I just want answers and to feel better, to feel normal again. My OB is sending for a brain MRI next week because he doesn’t think my menopauseis from my ovaries failing but in my brain with my pituitary gland that’s responsible for regulating hormones and checking my hypothalimus. I had never heard of that before but my list of symptoms he said sounds brain related. Then I find this article which I’m going to take to him and my primary. I’ve had a drug problem that began in my early twenties to opiates that my Dr prescribed monthly. I went from half a pain pill to at my worse 30 to 40 a day then I moved on to stronger opiates. I had never taken a benzo, I had been offered but I liked the energy from pills so I wasn’t interested in a downer. Well I had my first panic attack and was given 0.25mg of Xanax twice daily as needed. I had them awhile before I ever took one. Well when I did I liked the relaxed,nothing can bother me feeling. It also number the pain of my abusive marriage and trauma in childhood that I had never dealt with. I told the Dr about being addicted to opiates but that didn’t keep him from upping the dose and quantity. Over the next few years I developed a severe addiction to them. I had blackouts, memory loss, confusion, being heavily sedated and would nod off at the drop of a hat. I totaled multiple vehicles even got felony possession charges for having unprescribed ones on me. Withdrawals are unbearable. I can’t even describe them. Well I sought treatment many times because I needed help or I was going to die. I’ve been clean from opiates for about 7 years and my last Xanax use was probably a year or so ago. I was doing a few maybe a few times a year. My Dr prescribes me 0.5 mg of klonopin 2x daily as needed but he is my addiction Dr so he only gives 20 at a time so even if I tried to get high there’s not enough to do so. He’s slowly tapering me off. If this sounds familiar to anyone or any suggestions I’m listening. I’m fed up with being sick and taking like 10 different meds a day. Is there any cure for the damage that benzos cause to the brain does it heal or is it permanent. Truly frustrated!
Look online I’m sure now oct2019 there will be more info lisa ling CNN benzo crisis I guess millions of people are wrong brain chemicals are all out of wack so you feel lots of different things .I got them for stress for 9 yrs when I tapered I felt suicidal crazy not well ect ect ect I’ve never felt this way in my life I knew what I had done was brain damage JACKASS GET EDUCATED PLEASES
None of that matters. These doctors could make points that tiny aliens are invading their morning cereal causing loose stools about an hour after morning cereal and literally no one would seek their help.
So these are people seeking help.
Next, if they show no proficiency in helping the morning cereal events no one would bother sticking around. They didn’t have the symptom, and if they did, they weren’t helped by the answers provided.
That’s how medicine works. People who know something about something so people come back to see them.
I wouldn’t spend my time debating people who say ridiculous things, as you clearly do think. So who is crazier? People who say morning cereal has aliens or people who stick around to debate them?
Move on, this happens all the time. Anyone over the age of thirty should be able to pick up on the fact we don’t know much: as evidenced by each passing century. Just pick up a book on the things almost all people believed in 1746, and 1237, and 500 BC. Not some people but all people. Yep, we live like this.
None of that matters. These doctors could make points that tiny aliens are invading their morning cereal causing loose stools about an hour after morning cereal and literally no one would seek their help.
So these are people seeking help.Next, if they show no proficiency in helping the morning cereal events no one would bother sticking around. They didn’t have the symptom, and if they did, they weren’t helped by the answers provided.That’s how medicine works. People who know something about something so people come back to see them.I wouldn’t spend my time debating people who say ridiculous things, as you clearly do think. So who is crazier? People who say morning cereal has aliens or people who stick around to debate them?Move on, this happens all the time. Anyone over the age of thirty should be able to pick up on the fact we don’t know much: as evidenced by each passing century. Just pick up a book on the things almost all people believed in 1746, and 1237, and 500 BC. Not some people but all people. Yep, we live like this.
This has been a rough year for me. In February I went in for new glasses, but instead was sent for an MRI where I learned I had a bleeding pituitary tumor. Had to have emergency brain surgery, and the doctors placed me on high doses of Ativan, Seroquel, and oxi. After four days I started refusing Ativan and day five I stopped the Seroquel. I was sent home after a week in the hospital and went home with oxi. I weaned myself down to one oxi a night, and by June was completely off. Since leaving the hospital my skin has burned, I cannot concentrate, and get confused. (Expected this I did have brain surgery). I have since been told I have M.S. and hashimotos. Really hadn’t had too many symptoms. Fast forward to October of this year, my six year old comes home with COVID-19. Within a week all four of my kids and I are sick. By week two me and my two older kids all have covid pneumonia. I was sick and trying to make sure no one died. On top of that, someone stole my purse during week one with my phone, car keys, money, everything in it. Week two I walked with pneumonia to get a new car key, bank card, and phone (to take us to the er because we had pneumonia.) At the end of week three someone tried to steal my car, they ripped the ignition out, cut wires, tore the dash up and set it on fire. November 6th I was having severe chest pains and couldn’t breathe. Called 911. They ran tests, said it was anxiety and put me on Ativan 2mg as needed. Went to the Dr next day and she put me on 1mg three times a day. (I hate meds, only thing I usually take is a water pill for high blood pressure.) We also realized at that appointment that I was severely anemic and my potassium and magnesium were low. I have been eating right and corrected my electrolytes/iron levels. But I continued to take the Ativan 1mg at night (it really has been a stressful year.) Monday will be one full month of the Ativan. Recently I have been feeling really off during the day, I feel nauseated, I have horrible shakes and chili’s, jaw/neck pain, burning in my abdomen, chest pain/palpitations, problems with both tachycardia and bradycardia, and thoughts of dying. I think I am having intermittent withdrawal symptoms, as I start to feel ok an hour or so before I take my next dose of Ativan. I have been to the emergency room numerous times, see my Dr weekly, have started seeing a therapist for my anxiety, am seeing now a cardiologist. They cannot find a good reason for me to have these symptoms, so they say it’s anxiety and tell me to take the Ativan. Last night after spending the day in the emergency room again with no answers, I cut my pill in half, so .5mg Ativan. I plan to take .25mg during the day if my symptoms begin again and the same .5tonight. I will talk with my Dr about slowly tapering off. I know it was only a month, but this makes the most sense to me. Thank you for your article and for every person who has written a response (minus the two heartless people.)
On April 28, 2015 I took my last dose of Klonopin after 20 years of continual use for insomnia. I took it one time/day, about 10pm. I started with .5mg and the last few years was up to 4mg. I was in full drug withdrawal during the last 9 months of slow tapering. The first 2 years post-K were brutal.Overall, I’ve seen a very slow reduction of physical symptoms. Today, at 3 years post-K, I still have all the symptoms but they are usually low enough to get on with other activities. The worst symptoms are the torso tightening/ spinal contractions and spasms they send forth which can be extremely painful depending on where they lodge. The paresthesiae are also painful and often keep me up at night. Sleep continues to be an issue.I think most people would have gone back on K by now but this is not remotely possible for me. Genetic testing I had done last year at a state university’s genetic facility showed that I carry a homozygous recessive trait called NAT2 which means I’m an “ultra slow acetylator” and don’t have the ability to detoxify one of K’s metabolites. Apparently this is a source of the neurological injuries I have been dealing with. I do feel I’m slowly recuperating and recommend that people get off this drug, unless for an absolutely necessary medical condition and under the strict supervision of a benzo-trained doctor. I took K for an unnecessary reason and was mislead by well-meaning but ignorant doctors, and my desire for an “easy fix” for a long term sleep problem. I’m sleeping better now (despite protracted withdrawal symptoms)thanks to the help of sleep doctors, improving dietary/exercise habits, and using daily relaxation techniques.
Thank you JC! I’m surprised to see genetic illness ehlers danlos mentioned as I was even tested for this! After 13 years of poly-Pharmacy I was both physically a d mentally declining. No doctors could help. This information is so necessary and I’m so glad to see awareness being spread. I have even given my prescriber the information to the benzodiazepine information coalition and his feedback was positive. Hang in there everyone, I’m starting to feel better than ever and I’m not even two years out from stopping benzodiazepines. These medications should be illegal for long term use.
Liz,you are correct. Those drugs need to be outlawed, not just restricted. You are fortunate you found a doctor who listened. Every doctor that my husband saw handed back to us the prolonged Benzo withdrawal syndrome Information.
Liz Pengitore did you have symptoms of Ehlers-Danlos. I know this is old post but would love to hear about this. I have symptoms that were worse when in withdrawal but now active again. I would HOPE it is still BWD and not actual EDS, though I have always been hypermobile.
This hits home for me more than anything else about this nightmare. Due to multiple misdiagnoses and polydrugging I went from a beautiful, healthy 140 pound woman to a 285 pound helpless, bedridden wreck. I’m near the end of a Klonopin taper that began in early 2017 at 3mg. By September I should be free of benzodiazepines but I am still grossly overweight and have years of healing ahead of me. The worst part is, I lost almost 2 decades of my life to this poison. I feel as though I have awoken from a long sleep to a real life nightmare to find an undesireable, ugly, fat old woman staring at me from the mirror. It’s absolutely unbearable.
Are you off. Are you healing? I’m trying to taper off right now myself. I have not made much progress.
I’m 2 weeks out of my klonopin 7 month withdrawl:) keep on going please!
Martha, I was on benzos for most of 30 years. The final one before my taper was Klonopin, but I switched over to Valium for the last 6 months of the taper because it has the longest half-life. I’ve now been off of all psych meds for over 3 years, and after an unexpectedly painful 6 months of withdrawal that began a week after my last micro-dose of Valium, my brain and body healed, and I’m better than I’ve been since beginning the drugs. It’s sad that I lost so much quality of life to them, but I am thankful to have figured out what to do about that and how… If you’re still in the thick of things, there’s a very good closed facebook group called Beating Benzos that can offer support, advice, and lots of understanding. It’s a journey well worth the effort! Best of luck to you…
Stevie Nicks talks of her Klonopin experience. I myself am 3 months off of Lunesta with 9 years of use as per Dr. I am having terrible cognitive issues that I believe are very close to benzo problems because it also has to do with GABA receptors. My symptoms closely mimic M.S luckily neurologist ruled out. I haven’t found any info on Lunesta causing issues for others but nothing else is showing up on medical tests but I feel awful. It has to be my brain. Going to work with a natural Dr. for guidance. Healing to All.
God bless you for going through this, don’t get down on yourself, you are a strong person to have even decided to get off these poisons, and you’re helping others by sharing your experience. I wish you the best. Please stick with it, and enjoy the rest of your new life.
I have the same overwight as you with also very dry eyes and also milk in my wist.i hate my body.i was very beautiful like you with a good job.i lost all.i want to diy.but tere s a hope.i began a prier that must last 30 days.if you want to know what is this
Last hope.
Ladies we can only go on from where we now are, yes? Plus remember you may still be seeing yourself thru the pain of withdrawal. I’m nearly 60. I look old now too. I had many wonderful jobs and opportunities that all melted away to the haze and discomfort of Benzo’s. We may look different than we did before this started or when it started but we would look different anyway and we can’t guess in what way. We’ve lived the lives we’ve lived and now we have some experiences and knowledge that we can use to share to help others and maybe ourselves. Don’t think and talk about yourself in negative ways. Find ways to make yourself feel pretty the way that you are now. Jeeze…I spend wayyyyy less time looking in the mirror that I did when I was much younger but those things that I don’t like that have happened to my skin etc. aren’t there in my face when I’m using my brain and sharing with others be it here or a neighbor who stops by. If I can get someone to smile for any reason during the day it makes me feel happy and young. Look at all of the positives and the fact you are doing things to improve yourself and your life because you are. Not easy things either. These are hard things and time consuming as you said but at least your not in a fog or lost in our thoughts. I lost several very good friends whom I loved deeply to suicide because of benzo related injury they couldn’t function anymore and ended their lives. I’m doing all I can to not let that happen to me. That is why I have to accept me the way I am and love what I am and look at the gifts I do have and not the ones I no longer or never had. That will only bring despair. Write out a list of the positive things you have to offer! Cause you do! Thanks for posting that because I feel that was too a lot but I am who I am.