There is an ongoing failure in the field of medicine of patients and prescribers to recognize or properly diagnose 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 goes on to prescribe 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 begin to decline, often with seemingly no explanation. The benzodiazepine is usually never considered as the cause by the prescriber or by any other specialist they see. Some patients consult numerous specialists in 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. It is clear, however, that benzodiazepines can impact many systems in the body and disrupt neurotransmitter functions that play critical roles for healthy functioning. Because of this, the drugs carry a long list of known potential side effects as well as 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 are 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 the phenomenon when withdrawal symptoms emerge in 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 respective 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 is only dosing once per day, interdose withdrawal is likely. Of course, patients do 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: Tolerance, as described by World Benzodiazepine Awareness Day:
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 in order 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 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 which are 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
Patients who develop symptoms of the above conditions as a direct result of 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 safe manner via slow taper, nearly all the mysterious symptoms and conditions would slowly resolve on their own.
Real Life Impact
Serax Advertisement from 1967 warning of menstrual irregularity
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, in spite of 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 who were 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 polydrugged 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. They might seek mental health or physical therapies or they may 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 serve to 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 are able to 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 are probably wondering 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. A patient, in being their own best advocate, 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 a patient can manage their prescription, they do not need to go to detox; there are of course exceptions, but this is the general rule.
The third option is tapering off the drug. This must be carefully decided upon by both the patient and prescriber, 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 patients 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 are able to taper off in a reasonable period of time, with minimal symptoms, feel much better, and move forward with their lives.
Sadly, for a subset, somewhere between 10-50%, being free of the now problematic drug and moving forward quickly is not possible. 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. 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, taking anywhere from many months to many years, can completely disable the patient in their quest to discontinue these drugs. Added to that, 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 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 Heather Ashton, Professor Malcolm Lader or the late Dr. Raymond Armstrong, are all retired or deceased. That said, there are a few doctors who range from understanding to knowledgable that are 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 that is 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 near 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 3 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.
Janice Curle was working on her Masters in Clinical Psychology when she became disabled by taking Ativan as prescribed by her physician. She founded Benzodiazepine Information Coalition in 2016 to facilitate awareness, education, research and change.
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 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???
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?
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….
When you say “it is well known when a patient reaches tolerance their underlying symptoms return.” I find this statement dubious and contradictory to nearly every experience I’ve had personally or witnessed elsewhere. Source for this?
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.
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.