To Whom It May Concern:
I am a 40 year old cardiologist from the state of Texas, and I have been harmed by benzodiazepines. I was prescribed Xanax 0.5 mg three times daily as needed by my primary care physician during a health crisis in August 2015 (severe dry eye syndrome). I started out taking Xanax 0.25 mg nightly only as a sleep aid, as my eyes felt like sandpaper and were interfering with my sleep.
After only a few weeks, I began to experience severe anxiety during the day, which required more Xanax (up to 1 mg per day). I began to think that I was going crazy. I also developed a tremor and underwent an extensive neurologic evaluation, including a lumbar puncture that resulted in a severe spinal headache and an ER visit for a blood patch to stop the leaking cerebrospinal fluid. Xanax was never suggested as a cause for my tremor, although my dose relieved the symptoms of the tremor. It got to the point where I needed to dose every 6 hours as the Xanax would only last a few hours, then I would experience severe symptoms like difficulty breathing, chest tightness, and inability to swallow. I lost about 15 pounds (I am only 5’3” and got down to 115 pounds). I looked like a skeleton. I was terrified to be alone. I would wake up at night after 3 hours of sleep with my heart pounding and in a sheer panic.
After doing my own research, I discovered that I was experiencing inter-dose withdrawals and had become dependent on Xanax. I tried to taper off directly, but the symptoms were too strong. I spoke with my primary doctor and told her that I was sure I was dependent on Xanax and wanted to taper off. She told me that my problem was all anxiety as I had only been on the Xanax a few weeks, so I could safely cold turkey. She basically treated me as if I were crazy. I knew that I would be unable to cold turkey given the severity of my symptoms. She gave me a prescription for Lexapro which increased my symptoms, and I stopped it after only 3 days. She also gave me enough Xanax to complete a rapid 2-3 week taper.
Fortunately, I found the Ashton Manual and BenzoBuddies support group online and scheduled an appointment with the best psychiatrist in town. I brought him a copy of the Ashton Manual and told him I was interested in tapering off Xanax by crossing over to Valium. Fortunately he listened to me, agreed that I was indeed dependent on the Xanax, and he agreed with my plan to taper off with Valium.
During a period of about 5-6 weeks, I crossed over to Valium while weaning off the Xanax. Once I was on a stable dose of Valium (15 mg daily), I began my taper. I have been tapering Valium since January of this year and have proven to be very sensitive to withdrawal symptoms. I am currently down to 8.5 mg daily.
I experience a host of benzo withdrawal symptoms (I had none of these prior to starting the drug), the worst of which include a pounding heart, tremor, severe nausea, low appetite, insomnia, muscle spasm, severe acid reflux, severe constipation, confusion, anxiety, and depression. I constantly live in a state of terror and “fight or flight” mode.
My life is quite frankly a living hell. There have been times after cutting my dose where I have been in so much despair from my symptoms that I have considered ending my life. My mind constantly tells me that I will never make it, and that I will never get better. The only thing that has kept me going is the fact that I have a husband and 5 year old daughter. Honestly this is probably the only reason I have not ended my life.
Just to be clear, I do not have any intention of ending my life. But I still am left with these feelings of impending death. I have persevered through much and will continue to persevere. I have learned and am still learning to deal with my symptoms. Fortunately, I made the decision to become a stay at home mom several years ago so I do not have the requirements of my work. There is no way I would be able to handle them from either a cognitive or physical standpoint. I have had to hire a nanny to help me with my daughter and household chores as I do not have the energy to get everything done, and there are days I am not safe to drive. My life is currently severely impaired. I cannot travel and I struggle to do day-to-day tasks. My entire family has been severely affected by my withdrawal syndrome.
As if benzo withdrawal were not enough, I was diagnosed with breast cancer at the end of April after having a biopsy done on a painful lump I found on self exam. I had just made a cut to my Valium dose 3 days prior to the diagnosis, and instead of going back to my current dose at the time, I stuck it out. I spent a week with little sleep, awake in my bed all night shaking with terror.
I underwent double mastectomy with tissue expander placement on 6/1/16. The surgery was successful but recovery was much harder for me due to the taper. The tissue expanders were placed under my pectoralis major muscles and I went for saline fills every 2 weeks (I required a total of 6 fills). The pectoralis muscle spasms were excruciating and were exacerbated by my Valium withdrawals.
Although I held my Valium dose constant before and after surgery, I experienced increased withdrawal symptoms about 3 weeks after surgery (I am assuming the anesthesia and other post-op meds increased the Valium levels in my system temporarily, and I went into withdrawal when the meds wore off). Again, I spent a week with little sleep, lying in bed shaking, all my muscles spasming, including my painful post-operative chest. My symptoms were so bad that I considered updosing, but after discussing with my psychiatrist, I decided to ride out the storm and was able to stabilize.
In all this time of tapering, I have never once taken an extra dose or increased my dose of Valium. I was fortunate that my lymph nodes were negative and my surgeon was able to get clean margins on the tumor. I was staged at 2A and fortunately did not require chemotherapy or radiation. I was started on the hormone blocker tamoxifen which has somewhat complicated my taper due to the removal of estrogen from my body. I spent the summer in physical therapy dealing with my chest muscle spasms, which have greatly improved, because of the skill of my therapist and my dedication and perseverance.
After about 6 weeks after my surgery, I felt ready to resume my taper. I have most recently cut down to a total of 8.5 mg per day and am holding at this dose in anticipation of another surgery to exchange my tissue expanders for implants in early November. I am of course nervous how this will affect my withdrawals. It’s interesting that cancer has been nothing compared to the horror of withdrawals, and I have heard that from several other cancer patients I have met along the way.
I am writing this letter because I would like to help stop this from happening to more patients. I am angry about what has happened to me, and to so many other people. I am a member of the web forum Benzo Buddies, and I have met so many people that were put on these drugs by their doctor without being informed of the possible consequences.
I will tell you as a physician, that we are not trained about the severity of benzodiazepine withdrawal syndrome or the differences between the half lives and potencies of the various benzodiazepines. I attended medical school at the University of Texas Southwestern in Dallas, where I graduated Alpha Omega Alpha (top 5% of my class) in 2001. I did my internal medicine training at Washington University in St. Louis. Both of these are highly respected medical institutions. I was taught that benzodiazepines are potentially “addictive”, that they are not a long-term solution, and they need to be tapered off if used for more than a few weeks. But I was never educated about things like inter-dose withdrawal, tapering methods, severity of the withdrawal syndrome, and difficulty in discontinuation of the drug. These were not drugs that I used in my everyday practice as a cardiologist, with exception of IV sedation for a procedure. I thought I was safe by taking a low dose of Xanax for just a few weeks and could come off fairly easily. I was mistaken. If this can happen to me, a physician who graduated at the top of her class, it can happen to anyone. I bristle when I hear the term addict in reference to these drugs. I am not a person with a history of substance abuse, nor do I have a tendency towards addiction. I am tired of putting these poison pills in my body. But unfortunately, I am chemically dependent, and the drug that is poisoning me must be tapered slowly to keep me from becoming extremely ill.
I propose that there needs to be better education in medical schools and among practicing physicians, especially in the fields of primary care, psychiatry, and oncology where these drug are used frequently. I also think there needs to be better regulation of the prescribing of these drugs and it should be mandatory to obtain informed consent from the patient.
I will leave you with this thought. On my pharmacy pick up window, there is a sign that reads “Must show ID for all controlled substances for pickup”. I have picked up my Valium prescriptions monthly since January and have never once been asked for ID. No ID required for a drug that sudden discontinuation can cause seizures and death. No ID required for a drug that is considered to have more severe withdrawal than from heroin. No ID for a drug that has been implicated in numerous deaths from overdose (often in combination with opiates). No ID for a drug that has caused numerous suicides from the sheer horror of the withdrawals. Things need to change. I am not the only one struggling with this horror right now, and this madness must be stopped.
Sincerely,
Laura Christine Huff, M.D.
I have been trying to get off for years. Can’t seem to do it. Down to 3 .25 per day. I have heart failure. Have icd since 2007. I gave not been able to travel or drive. I am 71 now and can’t stand my life. What do they give for palpatation? I can’t take alot of meds.
My name is Kim Everett Mcmains and I to suffer from this! I have been off of xanax for a month after a 15 year old prescription. My heart beats out of my chest still!!!!!! What can I do? Could you please send me a private message on facebook about what to do???? I am in desperate need of your help and support!!!!
i already have gastritis esophagitis. only have reduce a bit of diaz and in agont all day in back to bottom eating anything..you said they gave you severe acid reflux . if im in a flare with my gastrtis its always been in my back. i notice you said severe constipation what helped you go.. mine is so bad loads laxatives. food felt in stomach ages too tapering olus other issurs but the pain eatung got soo bad i had to increase . if you rewd this my name is Linda Hicks on fb maybe poss message me i take 10mh diaz for sleep now hit tolerance but scared to try taper again..a retirer doctor noe homeopathy holistic said heds helped people before whilst tapering but gives b vits and ginsing etc . im on statins and bp meds . ppis no help..just famotidinr gaviscon at night..i have mild aortic stenosis and heart murmur. after non for yearw stupidly smokes 4 minths 2 4 a day some weeks nin. they affected the diazepam hence symotoms now. no cigs 4 minths no change. seeing cardio again 4 March . he said ni smoking and look what i did. i started bingeing on tarts crumbles bread never eat. trying hars to stop as get up and feel breathless after eating them next day..im sure its affected heart ..very very depresses doc put me on escalopram beforee cigs and fely better. still on it but since cigs doesn’t help . cant afford try taper again as sister palliative care and live alone. feel like ending as scared to go through months years of worse hell and no sleep
This is an awesome story as im living hell on Xanax for 12 years wish i can quit and only thing i get interdose is horrible heart palpitation, I need help.
I like Dr Madhava as she can help you at by visiting her website
benzotaperdoctor.com
As she is a wonderful and truly understanding doctor
IMO
That web site would not come up
Dr Madhava
benzotaperdoctor.com
Maybe very helpful
I was put on 5mg Clonazepam (Klonopin) daily for anxiety and very quickly developed interdose withdrawal waking in an agitated panic attack every single day. It was only after a trip to A and E that a hospital psych suggested my horrendous anxiety was caused by the very drug I was taking for it. I quickly tapered to 2mg a day and moved to a tapering dose of Diazepam. A year on I tried stopping but the withdrawal was hell, hallucinations – auditory and olfactory, racing heart, no sleep, pains everywhere, and intense anxiety and trauma. So back on Diazepam which i loathe with a vengeance. I complained but no one took any responsibility. Why was I given this evil drug. I am still here for my family, my kids but I wouldn’t wish this on anyone. One day I wonder if I will be benzo free. I hope so. But even now back on the drug, I haven’t recovered from the pain of the unplanned withdrawal. Its terrifying.
There needs to be some balance here. I have been taking 4 mg of xanax with gabapentin for over 5 years for insomnia. There have been many days and multiple days, traveling generally, where I have gone without. Never have I experienced anything described here and can easily substitute ambien if xanax not available. Ambien is fake sleep, so i prefer xanax and gaba. I know seizures possible in rare cases, but the panic attacks described here may not be the drug but the psychology of the person. Taking more than 1 or 2 mg means you have some deep seated other issues and you better work that out. The vilification of useful drugs is easy to do. I am not a N of 1 case. If u think u are addicted to xanax, you may have other issues.
You are wrong with your statement. I was prescribed .5mg of lorazepam for 21 days. Never had anxiety. Dr. gave them to me for sleep because my mother was very ill and calling in the middle of the night waking me constantly. I was very sleep deprived. Once my prescription was done I had horrible symptoms. Akathesia, stuck in fight or flight mode, internal shakiness, severe muscle pain where I could barely move my arms. I was one step away from being bed ridden. I live alone so that was not an option for me, so I struggle day in and day out. I am tapering extremely slow and it is a living hell. There are some people that can stop this med. very easily but there is a huge number of people that this med destroys.. Never was on any meds. my entire life. So you cannot say that all these people suffering have some other problem. The numbers of people damaged from these drugs are just too high.
attends un peu !je vous souhaite pas la tolérance ça peut venir d un moment à l’autre et là vous comprendrez quand le cours n en voudra plus pour certains c est une question de temps !
My Doc here In Brunswick GA gave me 40 mgs of valium..I self detoxed to 20 MG. they now refuse to see me because I reported the receptionist at Dr.David Deusers office at 9122670774.they blocked 🚫 my # and I feel 1mg of Ativan per day is not tapering me.i feel im turning into a monster,legs swelling and I’m 44 yrs old.i have a heart condition and when I called to make follow up appt this lady Michelle refused my appt because my doc had trouble getting into Athena appt log in.so..I dnt think he knows wth is happening. I cant email and was dismissed for reporting being threatened on Jan 9th and it’s on recording.i hate my life and I trusted my doctor.nobody will advocate 4 me at office in Brunswick GA and I’m scared.
Why were the doctors in Germany more trained on drug side effects and withdrawals?? Blows my mind. They do not care in US. Addiction is not important here.
While not quoted here, I want to remind you of some of her other words. Words that will help those suffering from what I have experienced as the most scary part of It all to get through. The protracted withdrawals. The point when you haven’t taken anything for 6mths and your body still shakes from head to toe with tremor and it’s still 24/7. (Not near as “bad” as 3mths ago but still HORRIBLE by any measurable means.) When you feel like you are still getting “tasered” every morning upon awakening and it still takes to 2hrs to even settle yourself into a mild constant “vibration” for the rest of the day. When it’s 6mths post meds you know achieving any “real” physical peace is basically “impossible”? I mean, come on?
When you get to the point that you realize the freight train in your ears (called tinnitus) will ring loud and forever and a day and there is NOTHING you will ever really do to be able to stop it. (Don’t worry you will get used to it no matter HOW “bad” it is. Promise.) When it’s 6mths later and “yesterday” still feels like it was “crazy” but “today” you feel like it’s better? Except.. TOMORROW you will feel like today was just as crazy? Trust me. Someone knows what I’m saying.
The trick to surviving this? She mentions it. “Radical acceptance” It’s a requirement to survive it? It is. You will see. Eventually you have to ignore the system failures happening around you and ultimately “not be alarmed”. (It’s just like the permanent tinnitus, you have to not be alarmed, as you experience it. )
You must also realize it may never end and to not get alarmed by this. You do it until you no longer GET alarmed by things. Eventually it just happens if you make it because you realize it just “has to.” Just like you’d get over loosing a leg because you have to. It’s a lot less painful to start immediately accepting things that you won’t see changing on a daily or perhaps monthly basis and to get it through your head that getting alarmed with only make things worse.
Just read. You have to adopt this eventually. The sooner you start the better you will be. Once you do this, you find the most bizarre peace. It’s not “physical”. Don’t worry. Tomorrow you will likely still tremor and your ears will still ring. It may slowly get better over the next months and years but you must not get alarmed. You just can’t?
“benzodiazepine withdrawal wasn’t the intensity and severity of symptoms, it was the fact that the symptoms went on for years. It was a relentless, 24/7 torture that defies description. Every day I wanted to die to escape the torture, but I kept going, holding onto hope that one day I’d be well again. It got to the point where I didn’t care if I died: if I made it, fine, and if not, well at least I was done suffering. I suppose this was my version of radical acceptance. With this attitude, I became an impartial observer to the fiery inferno occurring in my body, ignoring symptoms that would send normal people straight to the emergency room. It’s a strange state of affairs to be trapped in a body with every system imploding and feel no sense of alarm, but this is what was required for me to survive.”
Has anyone with Benzo Belly also tested positive for SIBO (small intestine bacteria overgrowth) in the form of hydrogen or methane? I did for methane and am now taking 3 antibiotics plus lots of supplements. Hoping this all helps with the bloating, distention, and stools, not to mention with eating.
Kevin, How are you doing now? It’s been a long time since you wrote on the blog.
I have tinnitus as well. Did it ever pass? Or is it still there?
Please let me know. I’m feeling a bit terrified here. Is there light at the end of this tunnel?
I hope you are well.
Barbara Denison
How are you doing now Kevin? I hope you are past all of the torture and I hope I get there one day too..
To drive home the nonchalance with which doctors dispense Benzos, I was at my pcp’s with my husband when my doc said to my spouse: you should be around when she starts these as she may have seizures.
We all laughed at the time. Me from a position of disbelief: the man must surely be joking. I never had any history of seizures, anxiety attacks or depression. Sleep deprivation due to years of chronic pain was and still is my problem. 15 mg Valium a day was his solution. Not only that, three weeks before he prescribed 1.5 mg klonapin and two weeks after the Valium, he prescribed .5 mg Lorazapam. The hospital did finally admit to me that his prescribing was inappropriate. Luckily never took the klonapin nor the Lorazapam, but the Valium took a year and counting out of my life so far.
Beware of twits in white coats.
I am a 52 year old woman who has had her life ruined with benzos, antipsychotics, and antidepressants. I am 5 months withdrawing from Geodon, Zoloft, Wellbutrin, and Ativan. I can’t sleep, I have gained a hundred pounds in 5 months still trying to withdraw. when I do wake up from getting any sleep the pain is so bad I think im going to pass out. I have countless vitamins and supplements vut the pain is still there and I can’t sleep. my adrenal system has been shot by these drugs. I am in psych hell because I am worried to death that I will not be able to successfully wean off them for good, my joint pain inmy shoulders feels like sharp knives sticking me whenever I move the slightest inch
Dr. Huff, I went thru this same nightmare starting in 2007, and almost succeeded in my suicide attempt 3 years later. I still deal with ptsd, and many other effects of being on Lorazepam for so long and in such large quantities. Even shortly into my withdrawal of 1.5 years the fibromyalgia symptoms began and are now very painful every day. My family doctor that prescribed the Lorazepam had me on 6 to 8mg / day for the last 14 months of the 3 years. The black hole I was in had no light whatsoever, and I just wanted to die. The Lorazepam literally beat me every single day, and it broke my spirit to the point I couldn’t fight the fight any longer.
I’ve been trying to get the law here in Minnesota changed, with no success. I don’t believe my Representative, nor our Governor believe me as to what I endured. Would you be willing to send me a letter addressed to my state representative and our governor referencing this article and how you feel about how Benzos need to be controlled? I’m sure they’d respect your opinion far more than mine.
I’m trying to get Benzos out of the hands of GP’s and into the hands of psychiatrists only, or as an alternative, restrict doctors’ prescribing methods to be in line with US FDA recommendations. But I’d really appreciate your opinion as to how you believe Benzos should be controlled.
Thank you, Steve C
Stevec4817@Yahoo.com
Can someone advise me if taking Seroquel is safe for a senior moreso is it safe during benzo withdrawal,? My doctor said the withdrawal symptoms would go away after two or three days. She is very young very naive and totally ignorant, and very very dangerous! My last dose of klonopin was just over a month ago. I have used the Seroquel as little as possible for sleep. It seems now it is making my symptoms worse and I don’t know what to do! I am so weak I know I’m in protracted withdrawal but don’t know where to go from here? Should I tough it out and try to stop the Seroquel or will in doing so likely end up in a sezuire? I live alone and far from town so again, What to do? I need a real doctor! I can’t believe they are so STUPID!
Tom, the psychiatrist that treated me during withdrawal took me off Seroquel. Not sure why, but that was my experience. Read up on the side effects of the Seroquel so you know what to watch out for. For me, it’s 10 years later and I still don’t sleep very well. Good luck with your situation!
Bezos should never be taken more than a few weeks. Too dangerous. A pox on Hoffman LaRoche. Valium killed my father in 1969.
Thank you so much for sharing your story. I’ve been hesitant to share mine as I have noticed all the benzo horror stories I’ve read thus far have involved patients who’ve taken these drugs for years. I took lorazepam 1mg daily for two months and I am on day 21 of moderate to severe withdrawal (my CIWA-B score was 46 two days ago, and I’m sure my score was much higher the first week post, though I hadn’t started self-admin the assessment then). I’ve been somewhat fortunate that I haven’t experience tremors, seizure activity, or akathisia, but I’m right on point with all the other symptoms you have experienced. The acid reflux has been the worst of all the symptoms, waking me up every night, with a close runner up being severe muscle pain. I have an autoimmune condition which I take an immunosuppressant for, and I recently tapered of a tricyclic antidepressant (which was it’s own unique version of 6 weeks of hell – frightening dyspnea every night, among so many other symptoms). My condition combined with going off lorazapam cold turkey I now see was my critical error, but I’m not about to go back on… I’ve made too much headway these past few weeks.
Can’t thank you enough for sharing your story and the victory that you succeeded in getting the poison out of your system – congratulations.
I’m sixty yrs old and had been successfully dealing with chronic pain on injections and reasonable opioid dose. Last December the pain clinic put me on a fentanyl patch. In February my pcp added 1800 mg Gabapentin and 60 mg Cymbalta. I went from 138 to 118 and was terrified. Weaned myself off Gabapentin and Cymbalta in March. And then off Fentanyl in May (hell). Was put back on Oxycodone just for withdrawal. Shoulder surgery end of May followed by Dilauded.
In the space of weeks my pcp had put me on Klonopin, followed by 15 mg Valium and ten days later Lorazapam. Needless to say I stopped the Klonopin for the Valium and didn’t touch the Lorazapam.
I went on Valium in June and have been trying to go down since September. First 5 mg easy enough, then waited two weeks. New pcp suggested going down 1.25 mg every five days. Am now on five mg and found that the last reduction has thrown me into withdrawal hell. All the symptoms you describe. It has been two weeks since the last reduction and I’m still struggling. No appetite whatsoever, acid reflux, nausea and fatigue and of course a sense of utter hopelessness. I stay home feeling awful. I’m also on 30 mg Cymbalta again which a psychiatrist started in September and 2 mg Dilauded twice a night for chronic pain. I’m 5’4” and down to 118 lbs. My life has been reduced to zero and I’m wondering if there is light at the end of this eternal tunnel.
Doctors are irresponsible. They seem to be ignorant of the chemistry involved. 30 seconds to prescribe and months of agony to undo the damage. Has anyone else experienced severe weight loss and for how long? When does one stabilize after a reduction. I would have thought two weeks was enough to see some improvement.
My best to everyone going through this hell.
This message is for Suzanne and also for the Doctor who is brave enough to tell the story specifically Suzanne, I have gone through what you went through with fentanyl, I am in my forties and have suffered immense chronic pain since I was in my twenties. I was vaguely of the side effects of opiates when I first started finally going for pain management however not nearly enough…Ad for benzos, uhggg, I have been told and no people that went into a seizures when they taper down or had to stop. I can’t even tell you how angry I am that I was never warned about either the fentanyl or benzos when they were prescribed, just the light-hearted responses from the doctors that these “may be addictive”. I was even told that I was not opioid addicted that I was opioid dependent and that basically men that I was taking medication that my body needed much like a person with a heart condition or Lyme’s disease or lupus yeah sounds funny and sounds absolutely ridiculous but not when you’re in the throes of having the opioid/benzo brain…I have been happily
off fentanyl for 2 years now after a very long 10-year battle with that and other opiates. I was never addicted to anything in my life, and found only two doctors that actually tried to help me however as I was being lowered off of the fentanyl, the doctors prescribed me benzos to help me deal with the side effects. I went from being on “the bars”, which we all know if we’re benzo people the bars the big 2 mg ones, and at one point I was on 4 a day!!!! Of course also not seeing that my life was spiraling into a hell and then another house that I wouldn’t wish upon my worst enemy. Somehow I am by the grace of God and many supportive people I was able to pick myself out of the opiate hell. BUT I am still on benzos and I am terrified, absolutely terrified beyond comprehension of what will happen to me when I start to come off of them.
I have been on a stepping down program to finally be on the lowest dose ever which for me felt like a miracle in itself until I started reading all of this bc I fell like myself again, I have had such severe anxiety and have been dealing with that my whole life when I read these things part of me feels better knowing I’m not crazy for the feelings and physical symptoms I’ve experienced since being on them for the past 10 to 12 years yet I am terrified I need someone out there to know that. I know that I can’t be on them forever and thinking of what I’m going to have to go through after going through the fentanyl withdrawal which as you Suzanne described is literally hell I can’t imagine having to go through again especially with something that was supposed to help me. So I know I have gone on a long rant but this felt like the best place and it was comfortable for me to do it and I just want to say to anybody out there this going through this you are not alone I’m even hesitant about posting this because I’m afraid somebody might recognize the story but I’m doing it anyway because there has to be hope out there I have to see it somewhere people sharing has made me feel like maybe things are not hopeless after all….
This is for Shell. I can’t believe what you’ve gone through and hope that you are seeing light at the end of the tunnel after these many months.
I am now 7 weeks off Valium and experiencing windows and waves. The windows are amazing and I get lulled into thinking the Benzo hell is over and then another wave arrives, like today, nausea, mini panic attacks, sweating and pain over the whole body as opposed to the left side pain I’ve had for over 20 years. It’s hard to know what is what when you’ve had chronic pain for years and then you have widespread pain: what is Benzo withdrawal and what is a further spread of existing pain?
You have come so far. You will get off the Benzos and feel better. It sounds like you have a good support system in place which is vital. I would advise doing a little reading to learn how to taper according to your needs i.e. liquid taper if you are super sensitive or just cut the pills until you get down enough to get off them. Benzo buddies has a ton of good information on tapering. Use the site to taper and read stories to know you’re not alone but don’t get bogged down by a constant stream of negativity. Also posts by Jennifer Leigh on her site Benzo Withdrawal Help has been good.
I wish you success Shell. Thank you for replying to my post. I’m now working on eliminating Cymbalta (another careless prescription). Down to 4 mg from 30 with another 3 weeks to go.
If I have one word of advice it is: NEVER let a doctor prescribe meds to mitigate side effects from another medication if it’s in the Benzo/anti-depressant category. I have yet to meet a doctor who understands the ramifications of doing this.
Take good care Shell. I wish you success.
Consider using CBD and magnesium to help with symptoms. I took benzos for my sleep disorder and then was told to go cold Turkey off them when I was sent to a pain management clinic. The symptoms were horrible but the CBD took them away.
What type of magnesium you take? What type of cbd?
I’m so sorry this happened to you, Dr. Huff. No one should have to go through this hell. I’m also not sorry. We need doctors who’ve personally experienced this to help us shine a much-needed light on benzodiazepine withdrawal syndrome. We appreciate the role you’ve taken on for the community. Have no doubt that you will make it through this and leave BWS in your dust.
Dearest Christy,
I am so very sorry for the long-standing sufferings Benzodiazepines have caused you and your family. I was prescribed Xanax in 1989 and my story is similar. I planned to write much more, but I’m too upset to do so at the moment. I wanted to thank you for all of the help you have given me. Our messaging back and forth has given me strength to carry on.
I was too sick to continue my taper 30 years ago, again in 2010. Today I am still tapering, using Dr. Ashton’s protocol. Excuse me. I haven slept in 4 days. Please be strong, yet gentle. I carry with me your courage and love. know that you are my Angel and Warrior.
BethAnn
There will never be better education because the pharmaceutical industry sponsors med school and CME courses.
Thank you so much for sharing your story! I’d never heard of inter dose withdrawals. I’m shocked by your experience. My husband has just been told he will have to taper off a benzos, klonopin. He told the doctor it’s considered dangerous to taper too quickly. The doctor disagreed. I’m looking for information to share with the doctor. I’m glad you mentioned Benzo Buddies. Thank you again,D
I relate to every comment here
It’s hope for us all to have an advocate speaking out for us all
The nightmare is real and I wouldn’t want ANYONE to go through this horror if it can be prevented
There are NO words to describe being trapped in a body that your soul begs to be released from
Thank you for your support for all of us who need a voice
This is my second day without Valium. The withdrawal is nothing short of horrific. My head feels like it’s going to explode, my left ear hurts constantly, constant muscle spasms throughout my body, dizzy and many more symptoms. Some days I can’t get out of bed. I haven’t been out of my house in weeks and I miss my old self so much. I took this drug for a panic attack. How long must we suffer like this?
I am sorry to hear of your health . Mine is the same , brother passed they gave me Ativan small dose 0.5 mg for a year . I knew it was making me sick but could not come off it . Started small reduction . Doctor says no way 0.5 can affect you
Hang in there I will say a prayer for all of us
I came off 4 x10 Valium daily. I thought I was dying. I didn’t sleep for 8 nights. I was so sick I found myself on the streets looking for something take. As my psychiatrist had retired,and left all his patients with a letter that he was no longer practicing. I was so bad on the Valium I assumed it would easy to get another Dr. well little did I know they wouldn’t write me anything. I was strung along and treated like an addict.., which I was but not to my doing.
Anyway came off the Valium after about 19 months of buying off the street. I finally found a Dr. who listened to me and wrote me Rx for Xanax. ThTs where I am now. But I believe the lesser of the two evils is the Xanax . Because I thought I was dying without Valium.
I was taking prescription Xanax for thirty years. Today is day 89 without Benzos. I have found little to no help and am still experiencing difficult symptoms. What can I do?
Maybe cannabis for benzo withdraw symptoms ?
I am somewhat surprised Dr. Huff that your medical care when you began experiencing anxiety symptoms did not switch from Xanax to antidepressants very quickly after your symptoms started. Most physchiatrists know that long term treatment of anxiety and depression with Xanax as the main therapy is usually unsuccessful and can lead to addiction. Xanax is a good adjunct drug for anxiety suffers but SSRIs, SNRIs and MAOs are usually the main treatment.
You my friend are one of the problems. All the antidepressants are just another failed attempt for dr.s or what ever you are. I have been that route and after close to death seizures 47 minutes we’re one. I am disabled and that resulted from another seizure, and hit my head on a concrete poll. So do your research and you will see that is no solution.
Try those drugs yourself that you recommend. As someone who followed their rx exactly I was prescribed klonopin, parnate and perphenezine by 2 psychiatrists who didn’t know what they were doing.
How do you taper off all 3 of these meds which often do not work (they didn’t in me) and have side effects (which effected me).
Dr. Huff was only talking about tapering from xanax.
Try tapering from all of the 3 above when given no informed consent, or warnings of possible side effects.
I am 5 months withdrawing from Ativan, Geodon, Wellbutrin, and Zoloft. it is still a living hell with no sleep, terrible joint pain, massive weight gain resulting from me only being able to walk to my mailbox outside of my room, massive appetite increase due to no sleep and endless psychological suffering as well.
God bless anyone trying to get off of these drugs with callous support from doctors and family. keep praying for yourself and embrace the few people you can find in your life who are actually comforting,
thanks for letting me share
You are so so wrong. Ssri’s are just as problematic as benzos. The withdrawal symptoms are identical. And there is a huge problem right now where patients in benzo withdrawal get prescribed an AD and patients in AD withdrawal get prescribed a benzo – making the problem. So. Much. Worse. I only ended up on klonopin to treat withdrawal from Effexor (which of course wasn’t recognized as such). There is NO evidence that ssris can be used safely long term and plenty of evidence that shows they cause numerous physical and mental health problems.
Furthermore, had you actually read the letter Dr. Huff wrote, you’d know she wasn’t on Xanax to treat anxiety and only developed it from the drug. Secondly, they did try an SSRI and it made her symptoms worse. All doctors seem to know to do is to throw more drugs at a problem CAUSED by drugs and this is causing more harm to patients who quite frankly are already in hell.
You are spreading dangerous misinformation and since you clearly are not dealing with withdrawal syndrome yourself, it’s best to stay quiet on topics you don’t understand.
Thank you for sharing your story. I am so happy you are getting the word out there about Benzos! This is a big problem that needs to be addressed & resolved. Doctors are prescribing these drugs without informing their patients of the dangers of these drugs. My son was given Xanax for anxiety at 21 yrs old while he was away at college by his pcp & it was a complete nightmare for him & our whole family. Then he saw a psychiatrist & was given kolonopin which I was told was a drug used for epilepsy, I had no idea it was another Benzo. He endured a Psychiatric hospital stay, diagnosed with bipolar a rehab stay, major depression, & suffering post w/d symptoms for about a year because he was cold turkey off the Benzos in rehab. Even rehabs have no idea the right protocol on Benzos. I was educating myself afterwards & found so much helpful information on line. I couldn’t understand how I sent a healthy child but go to college & he came home addicted to Benzos & labeled bipolar(which I don’t believe he has)
I too have lost hope in the medical community because of this. He was wronged by not 1, not 2 but many doctors.
Fast forward a few years & he has graduated college, has a good job but still suffers from mood swings & depression now, he is currently on lexapro &
He seems to be stable now but I don’t know if he will need these drugs forever or if he will eventually be able to come off of them. We are learning as he goes. I don’t wish this journey on my worst enemy. There are so many doctors out there who don’t believe & understand what these drugs did to him. It needs to be broadcasted so the medical community can realize & be more understanding of their patients needs. I have advocated for my son because I want him to be heard & feel like they listen more to me when I confirm his story.
Lisa, I don’t know if you’ll ever see this reply as I see that you posted over a year ago. However, on the off chance that you do, I wanted to say this:
Your son is definitely not bipolar. It’s the drugs. Also, the Lexapro is just as problematic as the benzo, and is most likely causing his mood issues now. It might be a rough road, but if he can taper off of that and make it through the withdrawals, he’ll get his whole life back. Here are som good websites that you may want to take a look at:
The withdrawal project
SurvivingAntidepressants
Also, the book Anatomy of an Epidemic by Robert Whittaker and anything by Dr. Peter Bregin.
Good luck to you and your son
Hi Lisa I believe what your saying, these meds are dangerous. My daughter is suffering because of these antidepressants. Hope you see this. I would like to speak with you I’m really going through it. I feel alone because the doctors don’t want to listen or care about what I’m saying
Christy – please email me as I have had almost same scenario as you including the breast cancer and the xanax. My email is debbiesz48@aol.com
Hi. I was on Ativan for 15 years when I suddenly started having inter-dose withdrawls. My doctor kept increasing the frequency of my doses from one at night to 2 at night, then 2 a day to 3 times a day. He refused to increase my doses to 4 times a day and that when I decided to stop taking them. I was totally ignorant to the dangers of cold turkey withdrawls and I almost died. I went back on them and only then started reading up on Benzo tapering. I tried to find a doctor to help me but some thought I was being over dramatic when I told them about going cold turkey and others wanted me to go into rehab. I finally decided to do the taper myself with the help of benzobuddies and the Ashton taper. I took 8 months to taper without switching to a benzo that had a longer half-life. Let me tell you, it was the worst hell I’ve ever been through in my entire life! I would sit for hours, days and weeks not being able to eat, sleep or even sometimes taking a shower! It’s been 8 years since I’ve been off of benzos and I’m still suffering from severe panic attacks and GAD. I’m losing the battle. My brain is permanently damaged by years of benzo use. I’m thinking of going back on them because I’d rather be a zombie that can’t function than being this mess which has become my life. Which, in other words, is no life at all.
I’ve been on Xanax for 39 years and I tapered off . I’m now 11 months completely off and HELL is still strong!! I’m Suffering so severe it’s breathtaking! I have electric shocks through out my entire body and severe abdominal swelling pushing up on my ribcage! Pins and needles throughout my entire body and breast pain, muscles, nerves and nausea, dizziness, dirrehea and symptoms go on and on! I’m not living and the torture is horrific nightmare! I’m considering going back on the poison that caused the problem because if I don’t I could possibly take my own life!!
@ Gale Ryan, I am so sorry this is happening to you. Have things gotten any better? Did you have to reinstate?
I weaned myself off xanax back in the late 1980’s. It took about a year and I did it in conjunction with L-Tryptophan. I was fine for about two years. I had to discontinue the Tryptophan because of the tainted batch that took it off the market. I was happy and healthy until I took my mother on a vacation. I got very little sleep, drank too much caffeine. I was very tired and anxious, especially while driving on a very crowded highway to get us home. I had a panic attack. I had some xanax in my bag and pulled over and took it. Big mistake! After that, I started getting all sorts of agoraphobia symptoms. I ended up back on benzo’s. This time, they were generic. I do believe that the generics are not uniform. So, my Ashton detox, going on now, several years later, is excruciating. I’m in a living hell. I’m determined to do it because Ativan wasn’t even working anymore as of a few years ago. I am off Ativan and doing the taper with Diazepam. I have days that are not too bad and days that are hell. I just hope that when this is over, I do not have horrible residual effects. Thank God I’m retired. If I had to go to work (I’m a retired nurse), I don’t know how I would manage. And, you don’t dare tell just any doctor what you are going through or, you will get “the label.” You will even get the label from some that are probably drinking and using drugs. They love to not take you seriously if they know that you have been on a benzo. I took a benzo, in the first place, because of a sudden and severe panic attack that made me feel I was dying. I actually felt like I was splitting in half and had to go to the ER in a very small town that had two ER beds. They gave me Valium and sent me home. So, that started me on my road to hell. Nobody suggested relaxation techniques, diet, exercise, meditation, energy healing or any of the things that might have prevented further panic attacks. As I sit here, writing this, my muscles feel like they are on fire and I feel as if I have hot grease coming out of my pores. I have knots in my muscles. I am so angry at pharmaceutical companies who do clinical trials that are not long enough to know what will happen in the long run. I would advise anyone to do whatever is possible to never get on this nightmare roller coaster. Now, there are things available such as reiki, qigong, tai chi and so forth. Do that instead. Run like hell from the pharmacy, especially now that everything is generic and who knows what garbage is in them. Good luck to all of us.
Im sitting here crying after reading about your benzo withdrawl hell. My grown son is currently experiencing this same hell. What are we to do about this epudemic in the US. I am sickened by the whole thing. Peace and healing to you!
I read these excruciating, and sometimes tragic histories of BZ use, as well as British research on systematic efforts to withdraw persons who had been using BZs between 1 and 20+ years, I am concerned some important questions are not being asked, and important research is called for. In regards to the questions, the British studies showed that with a very slow withdrawl protocol, a significant number (I believe about 2/3 were able to withdraw successfully, but 6 months later about 60% of that group had begun using BZs again daily. Some of the research questions raised by looking at both many histories, and some quantative data, raises the possibility that BZs could over time cause permanent, or years-long, changes in the GABA(A) system. Many of the histories describe signs and symptoms that do not sound like withdrawl symptoms (tardive dyskinesia is not a withdrawl symptom of D2 blockers). It is also possible that there are different genotypes of GABA(A) receptors, some allowing for straightforward careful withdrawl, but others perhaps changed permanently by BZ use. Certainly, neuroimaging studies, and genetic studies are called for.
An anecdotal observation. Having prescribed, and tapered patients off of BZs, I found that the only medication I found that was often effective in providing substantial benefits in difficult tapers was Tiagabine, a medicine that the FDA later cautioned against because of post-approval adverse event reports, and recommended against psychiatric use. It has a It does have some problems as an antiseizure medication. It, like BZs, increases extracelluar GABA, but has a different mechanism of action. Given the morbidity and mortality described by some, I wonder if anyone reading this who has had difficulty withdrawing from BZs has been prescribed Tiagabine (branded: Gabitril) for withdrawl symptoms, and what effects, helpful or adverse, did it have?
Since doctors don’t know how bad withdrawal is. Suggesting other drugs won’t work. I’m tapering from 6 mgs of xanax after 20 years. It hurts like hell. I’m at 3.25 mgs. My doctor is freaked out. He had no idea what this would be like. It sucks. But I want off and I will not take them again. There are many people in the Facebook pages that get off and never reinstate or trust doctors. Sad but true. Do a real doctor watched study. No one is doing that in the states.
Please do this study!
The way I understand, tardive dyskinesia is caused from antipsychotic drugs; do u agree?
I have taken Valium for 10 years. I took 5 mg daily for 5 years for pelvic spasms.
At one point I took 30mg a day for 5 months for untreatable nausea had my gallbladder removed then started a taper. The doc I was going to had me taper 5 mg every other day. I couldn’t urinate got a bladder infection and was given 3 rounds of cipro.
I also couldn’t sleep eat and was so sick and thought I was crazy. I went to a psychiatrist who said the Valium titration was wat too fast and put me back on 15 mg daily. I have been gradually titrating with holds at 10 mg for a year then 5 mg with breakthrough withdrawal most days.
I am also in chronic back and pelvic pain and was on hydromorphone for three years. I took myself off opioids a year and a half ago. A piece of cake compared to Valium.
I am currently on 4 mg daily.
I decided to go to a Nurse Practitioner to help with the rest of the titration. She had a 2% reduction compounded. I started to feel much worse. The compounding pharmacist said the Valium generic I was taking was full of fillers and his was very pure so I was actually taking a lot more that the 4 mg but no one knows exactly. I also went to Mexico before starting the compounded product and had a drink or 2 daily. I never drink at home. The NP told me that would also cause withdrawal and not to drink.
The nurse practitioner said she didn’t know about the differences in strengths before contacting the pharmacist to talk about my reaction and to go back to taking 4 mg. I have been back on 4 mg for 18 days and
I feel like I am dying. She said i should feel better in a month then get a scale use my current brand and titrate about 2% every 3 weeks to a month.
There are so many unknowns. I am fearful that I won’t stabilize and ever get off this terrible drug.
I don’t seem to tolerate supplements well. I am eating a healthy diet.
I am 72 years old and only take synthroid for hypothyroidism and some hormone replacement and Valium. I was very active so healthy and lean although I do have intestinal issues from the opioids.
I guess I need some advice and encouragement. I really don’t know where to go for help.
So sorry that you too suffer iatrogenic illness. You are however, doing such great work for all of us out there who suffer too. You are truly an inspiration. One question- did you take any flouroquinolone antibiotic prior to the dry eye and tremor starting?
Thank you. No I did not take a fluoroquinolone.
Thanks for answering. I had almost identical initial symptoms that led me to a benzo, however an FQ started them. I became dependent on Ativan after only a couple weeks really. Very sad the suffering these drugs cause. Thanks again for your work. Wishing you healing.
Hi Al, I’m the same with a fq starting the nightmare. Have you seen any improvement? Hope so.
I am also experiencing interdose withdrawals since taking a fluoroquinolone about 2 months ago. I’ve been on 2mg Valium 3x/day for about 6 months. Now I plan to have a conversation with my perscriber and tapper off.
How are you doing now Christy?
Hi Christy. I am a spouse that has watched her husband suffer for about 8 years from primary care doctors prescribing this crap. They don’t have any business prescribing it and as a result of them doing it without requiring a psychiatrist to be involved at least. They have ruined our lives. Now my 10 year old daughter has anxiety too watching her father deteriorate mentally. I’m exhausted and angry at the medical community. Thank you for speaking on behalf of those with no voice. God help you too.
Kristy
Hi. How are you? I am a 66 year old male military vet, with PTSD, taking Androgel, atenolol, and now tapering off klonopin. I am retired in Florida, trying to enjoy retirement.
I just found your open letter about your nightmare with benzos. Believe me, I hear you! I am so sorry you were going through the horror you were experiencing. I was on Xanax, Ativan, and now trying to taper off Klonopin. Worst nightmare. I found out klonopin is a poor choice for any effort to withdrawa. Years back I went in the hospital with anxiety. The psychiatrist put me on klonopin .5 mg 4x daily, with 1 mg at bedtime. That was supposed to help me sleep. Little did I know what it was really doing.
I am going a nightmare with klonopin taper now. I cant sleep. I am suffering during the day.
In ca
If you are still on this web site, I would like to hear how you are doing. My email is ajgrimes1@embarqmail.com. I have been on a 10 week taper It has taken a toll on my health
Look forward to hearing from you.