( A word of caution; benzodiazepines are successfully used by many people with ME/CFS and FM. Like all drugs, though, in the wrong person they can have negative effects, and, every now and then, someone who is very sensitive to them shows up. Despite taking only small dose of Klonopn for a short period of time Stephen turned out to be such a person. His story is to put forth to a) demonstrate that in rare instances these drugs can have very negative effects and b) provide help to those attempting to withdraw from them.)
My ME/CFS Story
I first became aware of ME/CFS or chronic fatigue syndrome in 2001 during my senior year in college when Dr. Patricia Salvato in Houston had told me that I had elevated immune response to the Ebstein Barr virus that is “in the range consistent with chronic mono or chronic fatigue syndrome.” I decided to see Dr. Salvato, who sees all the fatigue and fibromyalgia patients in the Houston, Texas, area because my aunt had been diagnosed with fatigue and fibromyalgia by her. I was born two months premature and had blood transfusions. That fact combined with genetic predisposition probably set me up for fatigue.
My constitution was fairly decent at the time, but it was clear other kids my age could dance circles around me energy-wise. Ultimately I managed to graduate from law school in 2007 and pass the Texas bar examine to become a lawyer. Anxiety and stress from the job over time wore me down further, and as time went on I was physically unable to do more and more; in particular, my tolerance to exercise lowered further.
I was sure I could regain a large amount of my health and energy as soon as I would get a break from work; however, at one point a series of events conspired to throw me into a dangerous tailspin.
It Begins….
Almost three years ago, after listening to an interesting piece on National Public Radio about the concentrated nutrition in some foods that our ancient ancestors ate such as dandelion greens, I decided to buy some and juice them. I purchased red dandelion greens and juiced them.
The following night after drinking the juice I could not sleep, felt extremely hot and experienced slight twitching. Unaware that the juice was to blame, I foolishly repeated drinking the juice for two more days resulting in the same reaction. My sleep returned and the twitching stopped after discontinuing drinking the extremely concentrated juice, however, I began to experience snowballing insomnia over the following month.
Insomnia and Lunesta
First there was Lunesta
Over time I felt that I needed to take action to get more sleep in order to function better for work so I had Dr. Salvato write a prescription for Lunesta. I tended to get more sleep taking Lunesta but during the day I felt strangely detached from the world. Over the course of the 17 days that I took Lunesta, I also began to experience bouts of intense fear for no apparent reason, and hyperacidity in my stomach resulted in me going to the emergency room for the first time since I was 4 years old.
Subsequently, I discontinued Lunesta. The intense bouts of fear lessened as did my stomach pain but my nerves were shot. Before taking Lunesta I was distressed and tired over my trouble sleeping but after Lunesta I developed fear of not sleeping and some restless leg syndrome as well.
My fear was compounded by my natural oriented gastroenterologist, who said that I was “very ill” and she wanted my cortisol and DHEA tested. Unfortunately, my anxiety induced internet searching led me to some websites hosted by nonconventional medical doctors who claimed that if your cortisol and DHEA levels are off, then “you will never sleep again.” (That isn’t true by the way)
Eventually my test results for cortisol and DHEA came back mostly normal. My gastroenterologist agreed that my nerves were my problem and said she would defer to “whatever my psychiatrist wanted to do.”
Klonopin (Clonazepam) For Insomnia
Then Klonopin
The psychiatrist quickly told me that the vast majority cases of insomnia are caused by anxiety and prescribed the benzodiazepine tranquilizer class drug, Klonopin. When I raised a concern about whether Klonopin is habit forming and appropriate for long term use, he quickly responded saying, “I have tons of patients who have been on benzos for years, and they don’t develop tolerance to them.”
I took 0.5 mg of Klonopin each night – not considered a very high dose. For the first two weeks I noticed my dreaming had stopped, and that I and woke up in the morning feeling surprised that I had been asleep for 7 hours. I felt some relief for the extra sleep but a bit emotionally numb as well. At the time the trade off for less anxiety and more sleep seemed worthwhile, however, in two weeks time I began waking up more frequently at night, and I began to experience more daytime sedation, exhaustion, and physical agitation (tension and heart palpitations).
Withdrawal Attempt #1
I knew I ultimately needed to stop taking Klonopin. I managed to reduce to 0.25 mg, but every time I tried cutting the pill down from 0.25 mg to 0.125 mg I developed worsening agitation, heart palpitations, and exhaustion. My functioning at this point was clearly worse when trying to taper off of the drug than it was before I ever started taking it.
After seeking a second opinion, a second psychiatrist told me that 0.5 mg Klonopin is “nothing to worry about”. I began to be more concerned about his opinion when I noticed, on more than one visit, him taking pills out of a prescription bottle and popping them in his mouth When I asked him what he was taking he said, “They’re vitamins Stephen. I take every vitamin there is.”
Knowing that he probably had much firsthand experience taking psychotropic drugs himself, I asked for his opinion about benzodiazepines. He said, “I personally don’t like benzos because they make me feel anxious and depressed.” I was feeling the same way, but I didn’t know how to get off the drug. I told him that “I think getting off this drug could be the hardest thing I do in my life.” And he replied, “Maybe”, but did not seem concerned.
Withdrawal Attempt #2
Instead of feeling calmer on Klonopin, Stephen felt more agitated
The psychiatrist eventually told me that I could “simply stop taking the drug” if I wanted as there would “be no withdrawal from 0.5 mg of Klonopin.” Boy was he wrong about that! I experienced anxiety and hyperventilation like I had never experienced before in my life. After three days and three nights of cold turkey withdrawal, I had to call it quits and get back on the Klonopin.
Subsequently, I was fortunate enough to see neuropsychiatrist, Dr. Garima Arora, who said that benzos are not suitable for long term use and “only mask symptoms.” She stated that I would have to be tapered off 0.5 mg of Klonopin and that I could not just stop taking the drug cold turkey. She lamented that she had seen pregnant women taking this drug, as clearly it could harmful for a developing fetus. Unfortunately, she could not provide for any better advice for tapering off the drug.
Withdrawal Attempt #2
My growing worry lead me to checking into the Menninger Psychiatric Hospital in Houston to help me withdraw from Klonopin. Dr. Robert Albanese at the Menninger told me that he had previously spent 20 years working for the VA Hospital. He said that his “first 10 years there were spent getting people hooked on benzos” and that his “subsequent 10 years there were spent trying to get people off benzos” because they had learned that “in the short run benzos work beautifully for anxiety, but in the long run tend to cause worsening anxiety and depression.” He said that he had witnessed people’s depression clear after withdrawal from benzos.
Unfortunately, I was unable to successfully withdraw from Klonopin at the Menninger Hospital. Fortunately my new therapist told me about a client of hers who “went through something similar.” He was helped by a benzodiazepine withdrawal expert physician, Dr. Raymond Armstrong of San Antonio along with the support of the people at a nonprofit organization that helps people get off psychotropic drugs called “Point of Return”.
In a phone conversation with me, the gentleman related his hellish experience with Ativan, a benzo class drug. He too had checked into the Menninger Psychiatric Hospital at one time after attempting to taper off Ativan too quickly. He had become delusional and extremely anxious during this time. Like me, he was extremely sensitive to these drugs. After checking out of the hospital, with the help of Dr. Armstrong, he was able to successfully withdrawal from Ativan. A few months more thereafter he fully recovered from his extreme anxiety state. He said, “All I can say is, it’s a miracle, and I highly recommend calling Dr. Armstrong.”
Withdrawal Attempt #3
In January of this year, I became a patient of Dr. Armstrong. He is a cardiothoracic surgeon who experienced firsthand the horrors of a protracted withdrawal from Valium in the 1970’s. Experiencing extreme agitation himself (as if worms were crawling under his skin), he decided to try to help people in the same predicament.
A few people react very negatively to benzodiazepines
Dr. Armstrong says that there is a large bell curve of where people can fit in terms of their response to benzodiazepines. He said, “On the far left end side of the curve are those lucky souls who have the constitutions of an ox and can get off benzos without too much difficulty. On the other far right end of the curve are the most sensitive people in the world who cannot tolerate more than a 3% reduction of the drug in a week’s time.” A 3% reduction of Klonopin (or any other benzo class drug) cannot be achieved by pill cutting. Pill cutting does not allow for such a gradual or precise reduction.
For this reason, Dr. Armstrong prescribes a liquid compound of the drug dissolved in almond oil. The liquid suspension is measured in an oral syringe. Unfortunately, people trying to withdraw from benzos on their own by crushing pills into water and trying to taper down using such experimental home practices may be setting themselves up for failure. Benzodiazepines are not water soluble and only dissolve evenly in an oily solution. In addition, the pills have fillers in them that prevent even distribution of the drug once they are crushed.
Dr. Armstrong also emphasizes the half life characteristics of each benzodiazepine drug, i.e. how much time elapses before half of the drug is eliminated from the body. In Dr. Armstrong’s experience, in the vast majority of people Klonopin works on a 12 hour half life, i.e. in 12 hours your previous dose is reduced by a factor of about 50%. He notes that most chronic benzo users cannot tolerate more than a 50% reduction of the drug in a day’s time. For this reason, he recommends that people taking Klonopin split their dose and take it every 12 hours as opposed to one time per day. Dosing twice per day allows for a much more even drug concentration in the users brain.
Dr. Armstrong refers to benzo withdrawal expert (and internet phenomenon in the benzo withdrawal world, now retired) Professor Heather Ashton of the United Kingdom – Professor Ashton states that withdrawal from benzodiazepines should be done very gradually, and over the course of many weeks or months.
However, as opposed to Professor Ashton, who recommends that patients switch to Valium (which is available in smaller dose pills), Dr. Armstrong points out that such method still involves pill cutting which is imprecise. Additionally, although in the same class of drugs, many people may not be able to switch to Valium because they do not tolerate it for a variety of reasons.
It is very important to note that no one and no physician can know how sensitive a person will be to the side effects of benzos when initially prescribing the drugs. A person can become dependent on the drug before experiencing tolerance but may not realize dependency until trying to discontinue it. Dependency can emerge in as little as one week of taking the drug on a daily basis.
Moreover, a person can experience withdrawal symptoms after developing tolerance to the drug while taking the same dose. Probably the first subtle sign of tolerance to the drug is reemergence of dreams during sleep. This is a sign that the brain has begun compensating for the drug’s effect.
Benzodiazepines, Sleep and Depression
People often take benzodiazepines for sleep; however, while the drugs do increase total sleep time (mostly in light stage 2 sleep), they can dramatically reduce the time spent in Deep Stage 3 sleep. For this reason, a number of doctors believe that benzodiazepines can worsen sleep. (Studies indicate that deep sleep is eventually restored after withdrawal from benzodiazepines.)
Benzodiazepines work by increasing the effect of the neurotransmitter, GABA. They do this by enhancing the activity of the GABA receptors in the brain. In most cases, the brain will respond by removing GABA receptors to offset for the imbalance caused by the drug. Unfortunately, this can leave the brain in a state of hyper-excitability when the drug is removed. Few psychotropic drugs alter brain functioning to the extent that benzodiazepines do.
Klonopin does increase sleep time but it may decrease the amount of time spent in deep sleep
No one with a personal or family history of depression should take benzodiazepines. Similar to alcohol, benzodiazepines depress central nervous system activity and can worsen depression. Unfortunately, unlike alcohol which has a definite withdrawal period (2 to 3 days), withdrawal from benzo’s and the symptoms associated with it, can last weeks or months. Dr. Armstrong said that the best way to minimize or eliminate the risk of protracted withdrawal syndrome from benzodiazepines is a very gradual and precise taper from the drug.
Anyone seeking to taper off benzodiazepines should not do so without the help of a professional. But that is the problem. Even those doctors that realize the dangers of long term benzo use do not know how to withdraw people who are sensitive to these drugs.
For those going through hell and back due to benzo drugs, there is help and there are solutions. For those not so sensitive to benzos, there still may be important factors to consider in making the decision to withdraw. As people get older, for instance, their sensitivity to benzodiazepines increases as does their risk of delirium, falls, fractures from falls, and death.
An Anticholinergic Drug as Well
Additionally, although technically not in the anticholingeric class of drugs (such as antihistamines) benzodiazepines do appear to have anticholinergic properties. This means they can inhibit (or lower) the action of the parasympathetic nervous system by blocking the binding of the neurotransmitter, acetylcholine, to its receptor in the nerve cells. Many people with ME/CFS and/or fibromyalgia may have autonomic nervous system problems.
The effects these anticholingeric drugs have on the nervous system dysfunction depends on many factors including their pharmacological action and how people metabolize the drug. I believe the possibility that anticholingeric drugs may be counterproductive in persons with ME/CFS/FM should be investigated further. That idea suggests, however, that a drug taken for symptomatic relief could actually be worsening the illness in some ways.
The literature provided by the drug experts at the Point of Return organization states that benzodiazepines reduce the brain’s output of excitatory neurotransmitters, including norepinephrine, serotonin, dopamine, and acetylcholine – all necessary neurotransmitters for normal functioning and emotional well being.
Today
I can highly recommend Dr. Raymond Armstrong, M.D for people seeking help withdrawing from benzos. So far with his aid, 8 weeks into my 40 week taper from Klonopin, I have been able to taper the drug safely by almost 25%.
I became especially intolerant to stress since being on Klonopin and that is still going on today. I get slight morning woozy hangover from previous night’s dose of Klonopin. I still feel a bit detached from my environment. Colors still appear less vibrant than before Klonopin.
I still experience some physical agitation and occasional heart palpitations but that has improved a lot since Dr. Armstrong’s intervention. I attribute my success with Dr. Armstrong to a combination of getting properly dosed on the drug to prevent withdrawal, and the psychological boast of knowing I have the proper assistance.
Stephen’s sensitivity to Klonopin began a cascade of effects he is slowly recovering from.
Although Dr. Armstrong recommends twice day split dosing, I cannot tolerate dosing in the morning or else I get incapacitated (excessive sedation and difficulty moving). As a result, I only dose the Klonopin once in the evening. I start getting withdrawal symptoms by early afternoon the following day, including increased physical agitation, bodily aches, increasingly uncontrollable obsessive thoughts, and inability to relax.
To remedy this, Dr. Armstrong prescribes Verapamil to all his patients that only dose one time a day with Klonopin. Verapamil is a calcium channel blocking drug used for blood pressure in most people, but in small doses, it can help prevent benzo withdrawal by slowing the body’s elimination of Klonopin.
It works quite well. I had to figure by trial an error at what time in the day and how much Verapamil to take. I find taking a one half tablet of Verapmil (20 mg) around 10 AM goes a long way in preventing withdrawal between doses, i.e. less physical agitation, obsessive thoughts, aches and pains, inability to relax and focus, shortness of breath.
Resources
Dr. Armstrong requires meeting with him in person for one visit at the emergency care center in San Antonio, Texas. The first meeting in person is required to satisfy regulators that a doctor – patient relationship has properly been established. After the initial visit, all work with Dr. Armstrong is performed over the phone. He spends whatever time is necessary to optimize the patient’s dose, taper, and give encouragement. Most often he will ask the patient the original dose he or she took of the benzo and have that patient go back to taking the higher dose (if the patient tapered too quickly on his or her own).
Dr. Armstrong can be reached by calling his cell: 210-865-1440. He generally responds to calls within one to two days.
For all those people who seek to taper off a benzo, but cannot see Dr. Raymond Armstrong, I highly recommend calling compounding pharmacist Roy Katz of Custom Rx Compounding Pharmacy in Richfield, Minnesota. Dr. Armstrong uses Roy to compound the benzos he prescribes. Roy is also an authority on benzo withdrawal and will likely work with your doctor by directing your taper schedule.
Roy’s website is http://www.customrx.com/
I hope these resources can provide warning to individuals considering taking a benzodiazepine (or non-benzodiazepine hypnotic drug like Lunesta or Ambien which works similarly in the brain) on a long term basis, and hope to physically drug dependent people who need help withdrawing. Isolated use of these drugs appears to be rarely problematic, but taking them for more than 3 consecutive days may be gambling with your health and well being.
Thank you for the referrals and this detailed account of your harrowing experience. Years of working with various doctors with limited knowledge as well as trying to taper off myself using the Aston protocol have yielded minimal results.
And thanks to Cort for sharing this information.
Another affirmation of how different all we human beings are.
Isn’t that the truth…when a medication can help one person and totally tweak another person? The variability is amazing.
My doctor cut my Clonazapam dose in half last week. Can anyone tell me what to do? She’s apparently not well trained. I have been using this for pesticide exposure, OPIDN, neurally mediated hypotension and CFS. I was moving to S. Africa but am concerned that taking on that trip would not happen during this very idiotic treatment “plan” which came out of nowhere. I NEVER take more than I should and Clonazapam saved my life. I’m a widow who went from 11 drugs down to 2 on my own. I’m actually terrified of being sick and alone. Dr. Paul Cheney protocol is all that has worked for me.
Jennifer, Dr. Armstrong says he has helped a lot of people that failed the Ashton method.
There’s still pill cutting involved with Ashton, which may not work for some people.
Hopefully, Dr Armstrong or Roy can help you out with another taper attempt.
I am down near end of taper but need help. Who should I reach put to? Is the pharmacist able to help. I already have an Rx?
I am sorry for this experience, but wanted to say that I have taken both Ativan and Klonopin for panic disorder, anxiety and occasional inability to sleep, and they have helped me immensely. I suffer no side effects or bad reaction and have used them sparingly. Each of our systems is different. For fibromyalgia, I have been prescribed numerous different drugs for pain and fatigue (mostly anti-depressants) – some of which did absolutely nothing and some of which had miserable side effects. I currently only take (and tolerate well) a limited amount of hydrocodone which is the only medication that has ever eased my pain. The point is the what works for one person, may not for another. One should not dismiss any particular drug because of another’s bad experience.
Whilst I can sympathise with the writer’s experience I share your experience Linda. It has worked very well for me and although I am most certainly dependent, I am functional during the day.Not near the level I was pre-ME but I can do thing I like and love and wake up in a reasonably decent state. Nothing else has ever worked inspire of my NP’s admonishments to try other meds. I just don’t trust many to even attempt withdrawal. And then after that, what then? back to worsened sleep, living in the house. Sorry no. I’d rather suffer the other consequences. It gave me a part of my life back and I am sure I would have fallen into a depression without that.
Agree, but what about the pressure to de-prescribe everyone off benzos? It’s definitely a thing and it’s absolutely happening. Looks like no one will have a choice including cfs patients for whom they’ve been helpful.
I’m sorry this med had such a bad effect on hou. It helped me immensely. Fir the first nine years of ME/CFS I was light and sound sensitive to the extreme. I could tolorate neither. My eyes jerked back and forth. My muscles spasmed. I had never had these symptoms until the illness hit me in one day. An expert in the field and colleage of Dr Nancy Klimas decided to try me on the generic of Klonipon. Witthin three weeks I could handld light and sound. The jerking stopped. Fir the first time in nine years I could look at a computer screen, watch some tv, have a friend over, etc. It shows how we all are different. It gave me part of my life back.
Apologies for all of the typos. I never see them all on my ipad until after I hit post. Darn,
It’s so interesting how all of our bodies are so different. Most of my symptoms started as a result of Klonopin.
Glad that it seems to be working for you instead of the opposite.
It’s just a little scary that no one knows how they will be affected by a drug until they start taking it. And with benzos, after being habituated to it, it’s not easy to get off it when you begin experiencing worsening side effects.
this is my experience too Pris. its one of the 3 or so meds of maybe 30-50 meds and supps I’ve tried that have helped anything at all.
I was able to drop my photophobia glasses and take out ear plugs and start getting more sleep on it. boy do I know it if i somehow forget to load a tablet into the dispenser. anxiety through the roof, light and sound back etc BUT i think pretty similar to me before starting on the drug. if its advisable to cycle off from time to time id give that a go
Linda, using these drugs sparingly is the key. They have a very important place in medicine for occasional use rarely are problematic. I am glad that you find these drugs helpful and use them wisely.
I was on klonopin for six years after I contracted Legionnaires Disease, was in a coma and then was given Ativan for three months. Of course, after that, I couldn’t sleep without a benzo. I was fine with klonopin for years, until I wasnt. And I was getting moodier and more reactive. The book, THE EFFORTLESS SLEEP METHOD, by Sasha Stephens, was the only thing that cured my insomnia, no more drugs, no sleep tapes, etc.
I’ll have to look into that book! There was an old episode of Family Ties where Alex couldn’t sleep for 8 days. He told his parents, “I’ve forgotten how to sleep!” That’s how I was beginning to feel. So hopefully your book can provide insight.
And like you Jeanie Klonopin was fine for me until it wasn’t. Except for me, it was only fine for 2 weeks. And at that point with all the increasing side effects I was experiencing on the drug, they only got worse when I tried to get off it.
But I generally felt more refreshed with 4 hours of natural sleep as opposed to 7 hours of medicated sleep. So Klonopin was a big loser for me pretty much from the get go.
This book, which I just read last year, was a total life saver. I have had CFS since about 1978, extremely sick, insomnia a part of the whole ordeal. I tried mediation tapes, hypnosis, etc. this book, get in Amazon, was the only thing that gave me the confidence that I could sleep without meds. It’s been 10 months now free of drugs. that hasn’t happened in 15 years!!
That’s great Jeanie- I’ll put it on my list. 🙂
Jeanie, I ordered the Effortless Sleep Method on Amazon. Thanks for the recommendation.
Thanks, Stephen. I thought that I , too, had forgotten how to sleep. This book helped me to see things differently. I trust myself, mostly, again.
This story is upsetting. 8 years ago i stopped sleeping to a point where i was going to go insane after trying all natural then non addictive the only thing i found to help was temezapam- i have been on it and go to a neurologist sleep expert for it- i also was given klonapin 0.5 for during day about five years ago- i tried to get off the klonapin and i did get down to 1/4 of a tab but then after a death in family i was put back up to 0.5- due to other health issues and the need to sleep im just keeping it as is now as i would need to probably go to a facility. But in many ways the temezapam probably saved my life as i have brain damage and without it i do not sleep. On a rare night when it does not work my chiropractor kinesiologist will get it to work again. I will look into effortless sleep method thank you for sharing. as for the time when i did get down to 1/4 a tb of klonapin it was a nightmare- literally having insomnia even with taking the sleep drug- way too much to go through without being in patient-
I’m also very sorry that the author did not benefit from this class of medication. Xanax has been a godsend for me. A couple of years ago I got anxious about my benzo use and very slowly tapered off Xanax after about 25 years of use. The taper went fine, no big issues, but, after a year off, I began to remember what life was like before Xanax and it was not good: anxiety, insomnia, panic attacks, etc. I had forgotten what it was like to live in that state of high anxiety and sleeplessness but it all came back. I had all of these symptoms for 15 years before Xanax but I thought they were gone because Xanax made me feel so completely normal that I could not imagine ever getting that anxious again. Xanax fixes me in some fundamental way that I don’t understand. I now again take a tiny amount when needed and life is once again worth living with ME.
Christina, might I ask how often and how much Xanax that you take?
You mentioned taking a tiny amount when needed.
Thanks
Now I take .15 to .25 (I have .5 tablets that I break) at night with melatonin. I take the melatonin first and if that seems to be doing the trick, I pass on the Xanax. I will also take it should I need to during the day but I very rarely need to. Very rarely being a couple of times a month.
I should also say that this is the only med I take. I have had issues with medication (had a nearly fatal reaction to SSRIs) and am very wary about taking anything. In fact, even before my bad experience, I was reluctant to take med.s and cried before I took my first Xanax. I cried, then I took it, then my life changed for the better.
Hi Stephen! I’m unable to locate any contact information for you. If you’re willing please contact me, when you’re able. I would like to give you my contact info but privately, if I’m able to do so somehow please.
Your story is a lot like mine and I’m so grateful for your willingness to share it with anyone who is willing to pay attention.
I was put on Klonopin .50mg and Sinequan 35 mg at least a decade ago. At the time the combination was one of the first medical suggestions coming out of California as a treatment for what was called CFIDS at the time. It helped my sleep and seemed to be a step toward better functioning.
A few years ago I decided to get off prescription meds. I eliminated Zoloft which was an SSRI antidepressant that had been prescribed with the other two drugs for its “synergistic” effect. Then I managed to reduce Sinequan from 35 mg to 10mg but could not go further down without sacrificing sleep. I then proceeded to eliminate Klonopin.
I ended up suffering months of horrible night sweats which I did not realize were a result of going off Klonopin. I ended up in the emergency room with a kidney stone (something I never had before or since) from dehydration from the extreme night sweats. It was only from reading on the internet that I realized that the night sweats were associated with going off benzodiazepines.
I consulted with a psychiatrist by phone who told me to go back on Klonopin and see what would happen. Within a few days the night sweats ceased so I reluctantly went back on this drug. The last few weeks I have started trying to go off Klonopin again but in a more gradual fashion. I am just doing a primitive chip off the tablet each night. So far no problem but I realize and emphasize that this has to be an extremely slow gradual process. I wanted to share my experience so others might not end up in the emergency room. Going off benzos has to be taken very seriously.
Susan,
I would encourage you to give Roy Katz, the compounding pharmacist a call.
I know people who managed to taper by pill cutting or water titration with crushed pills – others failed at this.
If you’re going to withdraw,you might as well give yourself every advantage.
Roy’s compound is $45/month including shipping. Usually not cost prohibitive for most people.
Im sorry for those who have had a severe bad reaction to this drug but I found low dose Klonopin to be a near life saver for me for a time. I was using it for severe constant almost unbearable anxiety along with like brain overload I was getting with the ME.
Ive had severe reactions to many other drugs eg one common hormonal drug sent me suicidal (I actually almost murdered someone) and had me end up in a psych ward till we realised it was this drug and stopped it, while another common drug given in ME for sleep caused my bowel to prolapse due to making my IBS-C far worst..stopped my perastilsis, while a psych drug sent me near psychotic and caused me to feel very violent and crazy. I cant take SSRI drugs either (mood swings, headaches, more tiredness and they dont help anything).
Anyway drugs and I dont often mix well but I did great with Klonopin there for many months 5-9? months), I was greatly thankful to it and things were unbearable without it due to the over stimuli. (I didnt take it for sleep just for calming down my system).
I did though in the end have to come off of it due to a sudden paradoxal reaction where I suddenly went suicidal for no reason at all (actually went to jump off of a roof and someone had to call the police..it was making me too calm and not fearful of ending up injured)..
but even so, I dont at all regret the time I spend on this drug as it helped me for many many months with very severe symptom before that happened. I honestly do not know how I would of coped without it. I probably would not be around today if it wasnt for it and it getting me throu that time.. taking away the extreme anxiety.
after the paradoxal reaction, I stopped it immediately with no after affects at all and in fact the original symptom I was taking it for never came back either to the degree it had been when I first started taking this drug. It had shifted to being bearable and not too much of an issue.
…
Ive also taken another benzo Temazapam for a few years at a time.. for sleep. I’ve had no issues with that at all, i take it just before bed and it will knock me out completely 15mins later.
My specialist only though allows his patients to take this twice a week (3 times at the very most with a bad week) as he says one can end up getting tollerance to this and have it cause issues in only 5 days straight of consistantly taking it. So we alternative taking this with other things.
I hope this others experience doesnt put people off of trying it if they have severe symptoms they need to do something for and cant take other drugs as this drug can be a like a life saver to some.
As people with CFS/ME we should almost by definition, be very understanding of people suffering because they are vulnerable to one or another health issue that most people are able to shrug off without harm. How many of us started this saga by getting ill, often with other people getting ill at the same time, but when the other people recover, we do not?
This being said however, the recommendations in this article are NOT actually very good for most of the people who are suffering from CFS/ME. Dr. Cheney and many other doctors who treat CFS/ME have actually ranked klonopin as one of the MOST useful and BEST drugs for people suffering from ME/CFS, and they came to this conclusion from experience. Close reading of this article also shows that in the experience of most of the doctors that Stephan saw, taking so small a dose of klonopin would never trigger dependence.
The advice in this article, to be reluctant to take the likes of klonopin for more than three days, might be acceptable to someone who is healthy, and whose only problem with sleep is poor sleep hygiene, but it is likely to be disastrous advice for most of the people suffering from CFS/ME, because there simply are not a lot of options available for treatment, and the vast majority of people suffering from ME/CFS are not going to suffer this unusual vulnerability to dependence unless the dose of klonopin is much, much larger. Having the little bit of help that the medical profession can offer a patient with ME/CFS can still make an enormous difference in someone’s life.
There is an underlying premise to this article that also needs to be reexamined from the perspective of the CFS/ME community. For a lot of health enthusiasts, prescription medications are something that can and should be avoided, with the problems that a fitness enthusiast encountering being things that can be dealt with better through a healthy conscientious lifestyle. Given the limited amount of help that the medical profession has been able to offer CFS/ME patients, we tend to become familiar with healthy lifestyle paradigms, since alternative medicine and lifestyles are almost the only option available. For that matter, it seems that a disproportionate number of us were into sports and health before we became sick.
Our paradigm as CFS/ME patients however is actually fundamentally different than that of a health-food and exercise active lifestyle type however. If a healthy natural lifestyle cured CFS/ME, a lot of us would be well by now. The only thing likely to really cure most of us is going to be artificial and unnatural. The most promising treatments for CFS/ME are cancer medications that disable crucial portions of your immune system, and all the indications are, whatever the eventual cure will be, that successful treatment for CFS/ME is going to have real risks. Yes we should acknowledge the people for whom the best treatments don’t work, but we shouldn’t recommend taking extreme caution when the illness is so severe and we KNOW from years of experience that most CFS/ME patients don’t need to worry.
There is a place for a “don’t rely on _____ as a crutch” attitude, and that place is NOT in the amputation ward!
I myself have had experience with this medication, having been given what are considered to be low doses in the neighborhood of 1 or 2 mg.
Like the vast majority of people, I have NOT suffered any withdrawal symptoms any of the times I stopped taking it. It did help with sleep, but more than that, it helped with fatigue, and with low blood pressure (you can find research papers on the subject if you research clonazepam and syncope).
Here I need to make one other point which might be important from the perspective of trying to treat CFS/ME from a scientific perspective. We have good reason to think that generally having more choline could be a good thing. Klonopin has an anti-cholinergic effect. Klonopin therefore is bad, right?
Well for me, the best medication I have yet been prescribed is Mestinon, which inhibits the breakdown of acetylcholine. This is definately BETTER, but the next best drug was in fact klonopin, and I have been prescribed virtually everything else used for treating hypotension and syncope, including the very dangerous and powerful Midodrine.
Terms like cholinergic and anti-cholinergic suggest a more straightforward and linear effect than a patient is likely to experience. Klonopin is not the only example either.
While most drugs with an anti-cholinergic effect have made my CFS/ME worse, and I normally try to avoid taking anything with this effect since they have twice triggered major relapses, two drugs, Bupropion and Norpace did NOT have these effects. The Norpace helped quite a bit for about eight months at stopping ‘crashes’ but Norpace stopped working. The Bupropion has helped somewhat, to the point that I would recommend it to any CFS/ME or fibromyalgia patient who needs an antidepressant, and Bupropion has never lost its moderate, but beneficial effect of actually cutting the fatigue of CFS a bit.
Anyway, I am sure that many of the people reading this will be aware that the medications that you use when you have CFS/ME can have varying and non-linear results, possibly because our bodies are trying to come into balance, but are locked into harmful modes.
I would ask us all to do our best to share our experiences, but also to be careful in our advice so that we do not make recommendations that overemphasize rare side effects. CFS/ME patients just don’t have a lot of available options, and if we encourage patients act in a way that is overly reticent about rare side effects we are going to just encourage doctors to write off CFS/ME patients as being people who are just obnoxious hypochondriacs. Lets share our experiences, but be cautious about recommendations.
Daniel, your experience reflects those people, as Dr. Armstrong describes that tend to be closer to the “safe” left end of the biostatistical response curve. This subset of people can take benzos regularly and abruptly discontinue them. My friend Craig is one such person. Taking 1 mg of Klonopin at night has little affect on Craig except that it helps induce sleep and he feels no effect of the drug the following day. And Craig has no withdrawal symptoms when he stops taking it.
The biostatisical response curve is a very real thing in terms of a persons reaction to medications. With benzos the biostatisical response curve is bifurcated or twofold – (1) direct side effects of the drug and (2) dependency and withdrawal response. A person can have severe side effects from benzos but find that getting off them is relatively easy – problem solved. Another person may tolerate benzos extremely well in terms of side effects (they may not even develop tolerance to the drug) however they are physically dependent on the dose they take, and might find withdrawal symptoms intolerable when attempting to discontinue.
Can You Know You Are in the Safe Left End of the Bell Shaped Curve?
One of the damned things about these drugs is that no person or his or her physician will know where that person fits on the biostatisical response curve in regard to this medication when first prescribing the drug. Dr. Armstrong has assisted a woman who found she could not discontinue Klonopin after taking it for just one week. With Dr. Armstrong’s help she was successful in discontinuing Klonopin, but her taper period was much longer than the initial one week she took the drug.
When I stayed at the Menninger Clinic, my investigative mind compelled me to speak with as many persons who had taken benzos. Two individual’s experience reflected yours (in fact one of them, Nathan, experienced no therapeutic effect nor side effect from taking 0.5 mg of Klonopin for 6 months and he stopped taking it abruptly without any ill effect. The same dose of Klonopin, 0.5 mg, knocked me into a dreamless state of sleep for the initial 2 the 3 weeks I took it.
Other individuals were not so fortunate. One had taken 2 mg of Klonopin for 20 years and attempted to withdraw within 5 weeks. The gentleman never had a panic attack in his life until he tapered off fairly quickly in a matter of 5 weeks. He acknowledged that his taper was too rapid. Another individual was rapidly tapered at the Menninger Clinic from 2 mg of Klonopin down to 0.5 mg within two weeks after being on the drug for 2 months. His withdraw reaction resulted in severe panic attacks in the morning. He also acknowledged that he tapered down too quickly.
And yet another gentleman, Steve, who I met long after he had recovered from his own nightmare with Ativan. He became delusional when attempting too fast a taper (as result, he ended up at the Menninger Clinic about 5 years ago). After leaving the psychiatric hospital, with Dr. Armstrong’s assistance, Steve successfully withdrew from Ativan. A few months thereafter, he made a full recovery from bad anxiety and depression, and he has been free from pyschotropic drugs ever since.
Just as you might be bewildered as to how a person could be so adversely affected by benzos, Steve shared with me in a phone conversation, his bewilderment that there are people who benefit from these drugs and who do not want to stop taking them.
My neighbor, Beverly, who suffers from chronic fatigue was “saved” by Klonopin and Remeron when she suffered from severe anxiety and sleeplessness. However, she did suffer moderate withdrawal symptoms when she discontinued Klonopin. Again, there is a whole spectrum of outcomes.
Can You Tell If Your Symptoms Are Related To Benzo Side Effects And/Or Withdrawal?
Another damned thing about benzodiazepine drugs are that withdrawal symptoms cannot easily be distinguished from severe anxiety suffered not as a result of benzo withdrawal. When Dr. Raymond Armstrong was suffering from protracted withdrawal from Valium himself, he thought he was simply developing one new psychiatric condition after another. It wasn’t until the withdrawal finally ended, that he was able to distinguish “normal” anxiety problems from withdrawal symptoms (for him withdrawal symptoms included the sensation of worms crawling underneath his skin). Recovery from any situation is very difficult when one doesn’t realize or distinguish the source of the problem.
Why Not Discontinue Benzos Cold Turkey?
The other damned thing about benzos is that, unlike alcohol that has an almost definite 3 day physical withdrawal period, withdrawal symptoms from benzo discontinuance can last indefinitely – several weeks or months after abrupt discontinuance.
I would like to highlight the distinction between addictive cravings for a drug and physical dependency. Addiction to Klonopin is fairly rare; however, physical dependency is extremely common. However, to highlight the distinction between withdrawal from alcohol and withdrawal from benzos, I would like to share my cousin’s experience at a drug rehab facility.
My cousin was treated for addiction to a combination of Xanax and hydrocodone (used to treat anxiety and migraines). While in detox, my cousin noticed the alcoholics were suffering terribly from withdrawal for about a period of 3 days – vomiting and severe nausea. After 3 days, these individuals experienced a night and day difference in their well being. Suddenly they were feeling fairly well (except, of course, having the mentally daunting prospect of coping in life without alcohol).
The benzo users, (who typically did not experience as severe withdrawal as the alcoholics during the first 3 days) continued to feel quite unwell for a period well beyond 3 days. Both benzo users and alcoholics had to be treated to prevent the possibility of seizure after “cold turkey” withdraw. (Risk of seizure increases after abrupt discontinuance of benzodiazepines the higher the dose and the longer the person took the drug).
Fortunately my cousin did not suffer from a post acute protracted withdrawal from Xanax. But he slept very little for a period of about 30 to 40 days (he had no sleep issues prior to taking Xanax). Sleep did return for him after about one month. But my cousin will tell you, “Hands down, detoxing from Xanax was much harder than detoxing from hydrocodone.”
Are benzodiazepines safe for anyone?
Certainly benzos appear to be a clear winner for those individuals who benefit from the drug with little subjective ill effect and can abruptly terminate use of the drug without suffering from withdrawal symptoms. Again, you won’t know who you are in this regard until you’ve been taking the drug for a while, and you can only judge by hindsight which can be a disaster if you fall closer to the right end of the biostatisical response curve.
My Knowledge with Benzos Is Not Only Based on My Experience
We are always biased by our own experience. That is why I have reached out to a number of benzo users or former users to develop a clearer picture. If I had to guess based on my anecdotal interaction with other benzo users (mirroring a bell shaped curve) there are about 25%, more or less, that fall on the “safe” left and curve of the biostatisical response curve, another 50% fit in the middle and have mixed results (some mild to moderate side effects and mild to moderate difficulty terminating usage of the drug) and the remaining 25% with disastrous results, i.e. moderate to severe side effects and/or extreme difficulty terminating usage due to severe withdrawal effects.
Are there any predictors for who might be in this subset of fortunate individuals? At this time, there are no known predictors for side effects or an individual’s risk of dependency and resultant withdrawal symptoms.
Anticholinergic Properties & Potential Risks
Regarding potential anticholinergic properties of benzos, I believe requires further investigation. It is very interesting that there is a noted link between chronic use of the anticholinergic class of drugs and dementia.
http://www.health.harvard.edu/blog/common-anticholinergic-drugs-like-benadryl-linked-increased-dementia-risk-201501287667
And there is a potential link between chronic use of benzodiazepines and dementia
http://www.health.harvard.edu/blog/benzodiazepine-use-may-raise-risk-alzheimers-disease-201409107397
This link to dementia is not conclusive yet, and there is some conflicting evidence; however, it appears that even researchers unsure of the dementia link still recommend that seniors avoid taking benzos because of increasing side effects including impaired mobility, increasing excessive sedation, increased risk of falls and delirium.
http://www.medicalnewstoday.com/articles/305922.php
Nonetheless, much more investigation is required into the physiological effects of these drugs.
Link to Depression
Chronic benzodiazepine use (much like chronic alcohol use) is highly associated with increased risk of depression. According to attorney Mike Mosher who sues benzodiazepine manufacturers on behalf of clients who have been harmed, people who already have some degree of depression very often become suicidal after taking these drugs.
Again, former VA psychiatrist, Robert Albanese, M.D. has witnessed patients whose depression clears when they successfully withdraw from chronic benzo use.
Why Benzos May Increase Risk of Psychiatric Symptoms & Other Ill Effects
One possibility why chronic benzo use being associated with worsening depression and anxiety is that these drugs increase calcium channel activity and intracellular levels of calcium in the brain.
http://jpet.aspetjournals.org/content/327/3/872.full
http://www.ncbi.nlm.nih.gov/pubmed/7824081
According to an article on the HHV-6 Foundation website, researchers in Japan are linking latent HHV-6B viral infection in the brain to depression and chronic fatigue syndrome. Particularly, the SITH-1 protein that the virus produces can induce depression in mice when injected into them. The article further states that SITH-1 production results in increased levels of intracellular calcium levels, a common finding in depression and psychiatric disorders. (The Japanese have developed an antiviral nasal spray to treat this that I believe is patent pending)
http://hhv-6foundation.org/cognitive-dysfunction/can-depression-psychiatric-disorders-and-cfs-be-triggered-by-a-latent-but-neurovirulent-hhv-6b-protein
Other research explores the possible link between the G-protein stimulating adenylyl cyclase and L-type voltage gated calcium channels and anxiety behaviors in mice. The study’s results identify the G-protein as an intracellular signaling molecule regulating the anxiety response, suggesting the G-protein or its downstream effectors (i.e. increased intracellular levels of calcium) may prove effective therapeutic targets in the treatment of anxiety disorders.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2688724/
If benzodiazepines increase intracellular levels of calcium, could they paradoxically cause increased anxiety?
Since benzodiazepines have a tranquilizing effect similar to alcohol by increasing the activity of GABA, a person’s subjective experience of its anxiety reducing effect can be a bit skewed. Often physical symptoms of anxiety, increased heart rate etc., experienced by a benzo user can be just as high in an anxiety provoking situation as had the person not taken the drug; however, the tranquilizing effect of the benzo may make the person feel as he or she is not troubled by these symptoms (very consistent with my cousin’s experience of anxiety while being on Xanax – his heart pounded heavily due to social anxiety, but with Xanax he didn’t care that his heart pounded so heavily). This, of course, is not necessarily undesirable. However, with the ever present risk of dependency and tolerance, in many cases the gamble is not worth not.
Dr. Armstrong will tell you that when he first took Valium, he thought he’d “found heaven.” After two years of taking it, he realized that “the stuff wasn’t working anymore.” So he abruptly discontinued the drug and suffered severe withdrawal. He began taking the drug again at that point, but he did not realize that his dose was less than his tolerance level, and he continued to suffer withdrawal symptoms (but he did not realize these symptoms to be related to withdrawal because he did not think he could be having withdrawal symptoms while taking it – he experienced tolerance withdrawal.)
Are Benzos Neuro-Protective as Dr. Cheney Suggested & Do ME/CFS Docs Have No Reservations About These Drugs?
It is clear in the sampling of these physician’s responses to Gabby’s harrowing Klonopin story that they do no prescribe Klonopin without reservations.
Dr. Bateman calls Klonopin a “double edged sword” in her comments. And they all seem to recognize the risk of dependency, while acknowledging that Gabby’s reaction to Klonopin was unique in its extreme severity.
Dr. Bateman’s comments that for every drug there is a large range of response. Her statement that for one it may be a great solution and for someone else a disaster reflects Dr. Armstrong’s observational experience with how people fit on the biostastical response curve in regard to benzos.
http://phoenixrising.me/archives/12200
In an interview with Prohealth, Dr. Klimas said that “Sleep can actually be worsened by many sleep remedies – particularly Valium like drugs such as Restoril.” (Valium, Restoril, and Klonopin are all benzodiazepine drugs and work very similarly in the central and peripheral nervous system)
http://www.prohealth.com/library/showArticle.cfm?libid=13462&site=articles
And I have been hearing more and more neurologists recommend to their patients to discontinue these medications due to the potential link to dementia.
Was Dr. Cheney speculating about the “neuro-protective” effects of Klonopin because of the symptom relief it provided his patients?
Was the “hell breaking loose” that Dr. Cheney referred to a result of coming off benzos due to the fact that the patient still needed the drug’s therapeutic effect, or due to withdrawal symptoms? Could Klonopin have wonderful short term benefits and disastrous long term outcomes?
What is “Low Dose” Benzo Usage – Appears to Be Relative to the User
Research into the variances from one person to another in the gene family called Cytochrome P 450 is beginning to shed much needed light on how a person metabolizes a drug. The 3A4 gene is responsible for the metabolism of benzodiazepines, as well as other drugs. Genetic testing revealed that I have a variant of the 3A4 that is linked with a slower metabolism of the drug.
Therefore, neuropsychiatrist, Dr. Garima Arora, told me that it is likely that the drug “builds up more in my system.” Other people can have a variant of the 3A4 that leads to a rapid metabolism of the drug. This group can often take much higher amounts of the drug and experience the same effects of a “slow metabolizer” taking much less.
I would like to point Dr. Nancy Klimas’ comments in response to Gabby’s harrowing story with Klonopin, particularly Dr. Klimas’ distinction between low and high affinity receptor binding. She makes the point about the dramatic difference between low dose versus high dose of these drugs and it relates to good versus poor outcomes.
Again, if dose effect is relative to the user, in part based on variants in the 3A4 gene, then 0.5 mg of Klonopin theoretically could have a high affinity receptor binding effect for some people.
My cousin’s experience in the drug treatment facility reflects the enormous range of doses of benzos that people could tolerate. Some freshly recovering addicts, he said, bragged in their “war stories” that they took as much as 15mg of Xanax per day. Yet despite my cousin’s uncontrollable addiction to Xanax, taking any more than 4 mg of Xanax in a day knocked him completely out, and he needed the stimulating effect of hydrocodone to offset the sedating effect of Xanax.
I still believe all the above discussed issues deserve far more attention and research.
The takeaway, is approach these drugs with caution. If you have been taking them for years with great therapeutic effect and little or no side effects, then that is wonderful. However, if you are one who is considering taking these drugs on a regular or almost regular basis, consider the risks.
Stephen, I admit to having to skim some parts of your reply to Daniel because it is so long. I understand how easy it is to run on when typing in this little box! I believe I got the gist, though.
You remind me a bit of myself when I had the catastrophic experience (much worse than yours with benzos, unfortunately) with SSRIs taken in the 1990s as a treatment for ME. I felt that they were very dangerous drugs and that nobody should take them; I was alarmed when I heard that anyone did and I was skeptical when told they were helped. I was blinded by my experience.
Anyway, that’s not what I logged in to say. What I want to say is that you do not seem to address the issues raised by Daniel. There are almost no treatments for a disabling disease that torments people and destroys lives. As I said earlier, I take nothing else. Nothing else provides the slightest help. And, I am very reluctant to take anything fearing it will just make an already overwhelming situation worse. Had I read your summation of the role of benzos in ME, I would be too afraid to take them and that would be tragic.
That said, some people do have a difficult time with benzos –as some have with SSRIs, some with pain med.s, some with BP meds…– if a medication has desired effects, it will most likely have undesired effects, too. We need doctors prescribing with that in mind and helping the patient discover whether or not a med is a good fit for them.
If you were talking about a heart medication, I suspect you would have been more careful to balance the way you expressed the risks and benefits. You wouldn’t want people to stop taking their heart medicine. I am left with the impression that you are unaware of the degree of suffering many patients experience. For most, it is not a case of “chronic fatigue” and patients are willing to take informed risks in order to find useful treatment. One of those risks many of us are willing to take is to take a medication that has been widely used for many decades. To me, this seems a very reasonable strategy.
I’m going to stop now before I reach a length that rivals yours ;0)
Stephen,
Thanks for your extensive feedback.
Dr. Armstrong’s experience of”tolerance withdrawal” was clearly presented yet I doubt if understood by many chronic pain doctors.
One notified me that I would be tapering off Xanax within the coming month-his prescription was for half my daily dosage!
In 1979 after my father’s sudden death, a hysterectomy and a serious illness which hit my 4 year old daughter, I suffered what was called in those days a “nervous breakdown”. The doctor dosed me with Nobrlum (30mg) 3 times per day. After 2 weeks he told me to stop! I was either still in a “state” or hooked. I was then changed to Lexotan (18 hr half life) and my life for the next 20 years became a long and painful series of attempting to come off and failing. As I was now in my 50’s I turned to Dr. Ashton’s protocol. Luckily, I was put onto the correct dose of liquid valium which was readily available in South Africa. As the Valium was liquid it was easy to reduce very slowly and I was finally off the chemical demon within 2 months. However, I then developed panic attacks but that’s another story
Margaret, might I ask how long was your withdrawal taper from Valium?
Approx 2 months. Like a previous sufferer I was taking 5mg Lexotan once a day.
Hi Margaret. I am a South African struggling to come off alprazolam (Xanax). Would I be able to contact you with just a few questions?
I’m truly sorry for your experience, and I do know of others who have also had sensitivity issues to Benzos. When I first started reading this article I apreciated that it said everyone is different and that Benzos do work successfully for many, but there are a few who have a sensitivity. But as I got further into the article I am reading about how the Dr your seeing believes that these may harm stage 4 sleep, and may have negative affects on CFS/ME. One thing I have learned since becoming a “Chronic Pain Patient” is that we are ALL different and our illnesses, regardless if we have the same diagnosed are personal to US, therefore what works for you, may NOT work for me and vise Versa. I was diagnosed with Bipolar at 18, took my meds exactly as prescribed, then developed extremly bad anxiety around 25. My doc put me on Klopin. I stayed on Klopin successfully until my accident at age 31, at which time I was eventually diagnosed with Fibromyalgia, Neuropathy, PTSD, Social Anxiety, TBI, and other things, I was switched to Valium. Again it worked successfully for me. Now I also attend groups for PTSD, Chronic Pain, I see my therapist, and I see a pain psychologist in addition to my PCP. I did decide to go off Valium on my own, why? Because I found I wasn’t using it as much in the last year. Not because of the side affects. I had none. I tapered off of it with no issues. Now I know that others do have side affects and it is important to recognize that and it is extremely IMPORTANT TO ALSO NOTE that if you are on any BENZOS LONG TERM you do NEED TO TAPER OFF SLOWLY UNDER A PHYSICANS CARE! Going off suddenly can kill you! But again I had no issues, and not everyone will. Benzos can be a great help, they helped me when I needed them, and I know they help a lot of people. I saw a comment about it is important to tell our stories, but not make recommendations and I agree with that. I believe that every person should get the best well rounded information and not just one story that isn’t everyone’s. Thank you for sharing, and again I’m sorry you had this experience, I’m glad your able to taper off successfully.
To respond to Christina’s comments. First I’d like to say I’m glad Klonopin works well for you.
The long and short is that for some people the drug is very helpful with less apparent downside, i.e. low or no side effects, no dose tolerance development, and relative ease getting off the drug if and when they choose to get off the drug.
For others the drug is a complete nightmare,i.e. high incidence of side effects, extreme difficulty getting off the drug – worsening fatigue, anxiety and depression.
For this group of people benzos are more of a poison than a therapy.
There are benzo support websites that back up the enormity of this problem.
It would wonderful if there was a magic way before taking these drugs to know how one will respond.
Hi Stephen,
I think we really want the same thing but we are coming at it from utterly different perspectives.
Xanax made my life worth living with, in my case, zero side effects. That is no small thing. I do not mean, in any way, to diminish the seriousness of your experience. As I wrote earlier, in the early 90s I had a hideous experience on SSRIs: terrible and nearly constant myoclonus, projectile vomiting, agitated depression (I was NOT depressed before taking, was prescribed for ME), near fatal hemorrhage, weeks of hospitalization and disastrous treatment. And, coming off them was a nightmare. I believed they were poison and good for no one. They are still being used so I must have been wrong. I sure hope I was wrong!
I believe all medication is dangerous. I believe that anything we take that can change the workings of the body in predictable ways, will also change it in unpredictable ways — some inconsequential, some very consequential indeed. And, people will react differently.
My concern here is that there is a lot of information available now about the problems some people have with benzos. I think that’s great but it’s only half the story. Benzos are being demonized, perhaps because they are now cheap drugs the pharma industry would like to replace with newer, patent protected, more profitable drugs — SSRIs, and the like, included. Given how they have been overprescribed for more than half a century, the safety profile is actually very good. I know there are benzo support websites, I used them to inform me as to how to taper off Xanax. They were very helpful and the people were having a legitimately hard time. You are quite right that for some they are problematic, I don’t question that, but for others they are life changing and even life saving. I hope what we are all looking for here is sensible balance.
You wrote: “It would wonderful if there was a magic way before taking these drugs to know how one will respond.” This is the crux of the matter, I think. We don’t need a magic way, we need a scientific way. Failing that, we need intelligent, informed and watchful clinicians prescribing them thoughtfully would attentive follow-up.
I have another condition for which there are few good options re medication and, like the benzo issue, a situation where some people, a fairly small minority, experience severe side effects from what med.s are available. I belong to a support website where this issue is discussed and, having heard some horror stories, I can’t bring myself to take them. They might work for me but I just can’t bring myself to take the risk. The risk I take by not taking them is considerable. I could be making a big mistake. I’m so glad I was not in this situation with Xanax! My life would have been very different and much, much harder. Maybe harder than I could have endured.
This is not a black and white issue but what I hear most of the time now is how dangerous they are and I never hear about how profoundly helpful they can be. So, I’ll be that voice when I can and where I can.
PS:
I have never taken Klonopin, only Xanax (alprazolam) another benzo, and many decades ago (1970s), for a short time, valium.
Oops! What I meant, of course, was:
“Failing that, we need intelligent, informed and watchful clinicians prescribing them thoughtfully WITH attentive follow-up.”
Agreed. There are a lot of unknowns. Your experience with SSRI’S is more common than you think. Sometimes they even have a Dr Jekyll – Mr Hyde effect as was recently the case with my uncle with Lexapro.
The benzo advocacy movement not only seeks to require doctors provide patients with informed consent, but also to ensure doctors don’t rip people off these drugs into a state of withdrawal. Some people function okay on benzos and never want to withdraw. The advocacy movement seeks to protect these people as well.
Although these drugs are all generic, many psychiatrists testify that they are perfectly safe for long term use, although evidence is suggesting this may not be the case.
You can read about the legislative movement in Massachusetts.
http://www.madinamerica.com/2016/04/update-massachusetts-benzodiazepine-bill-hearing/
Xanax was great for my cousin until it was disastrous. He said “We got along like peas and carrots.” Until he became addicted.
As good as Xanax was to him, for a while, taking Lexapro, gave him the horrible sensation of having lock jaw.
Another cousin has had no adverse reaction to Lexapro.
A lot of unknowns
Stephan – if you’re still around, just wanted to say your writing on this topic is excellent 👍 You’re exceptionally talented at research and presenting your ideas. Hope you’re doing well!
I’m wondering if there’s a way to msg you about something – I don’t mind bringing it up here but don’t know if you’re still around.
This is an excellent, thought provoking discussion. Thanks to everyone for the amazing input.
I’m still around. Feel free to email me at stephen.lacorte@gmail.com
Thanks! 😊
Did your cousin become addicted or dependent (with tolerance in either case?).
It’s an important distinction.
Stephen, very informative article. Was ME/CFS/FM or fluoroquinolone toxicity a factor in these adverse effects?
Not sure. ME/CFS doesn’t seem to be a predictor for terrible issues with benzos. It cuts across the board. All sorts of people have become ill on benzos, and ME/CFS issues don’t seem to be a factor, as a number of commenters on this page have testified that they have no problems with benzos.
But go to benzo support websites, and you’ll find all the people going through hell because of these drugs. No known predictors for whether long term use of benzos will be helpful or a nightmare.
I have taken benzos off and on for several years and have had no problems going off them when I was feeling better. However, I have never been on a benzo for as long as I have been now, taking klonopin. I have a very long history on my paternal side of Generalized Anxiety Disorder, the most difficult to treat because I always feel anxious I’ve seen both my Grandmother and my Father become housebound. I became adamant that I would never end up that way. Just now it is striking me that I have become so anyway due to Fibromyalgia, how ironic.
I sympathize with you and your sensitivity to benzos because I had a near death experience with a drug called desipramine. A Psychiatrist who was going through a very bad time in his own life gave me this drug for anxiety and it almost killed me. Turns out my body couldn’t tolerate it so my liver was overworking to clear it from my system. I ended up not being able to get out of bed and depressed, when I sought his help for anxiety.
My point is one that is mentioned throughout this string, we are all different and react to drugs differently. My maternal Grandmother had bi-polar disorder and desipramine was the only drug she could tolerate.
I appreciate you spreading the word and I appreciate that you spent your time e-mailing me privately.
I am now beginning my withdraw from Klonopin and so far so good. I do feel a bit more anxious, but the anxiety is bearable for now. I am working with my Psychiatrist and well see how it goes. In the past I’ve simply stopped taking them, which I now know is dangerous, but I just forgot to take them. I had absolutely no withdraw symptoms even then. I think I’m fortunate enough to be on the left, very safe side of the bell curve. I thank goodness for that because I do suffer enough for one person.
Stephen, as I said I appreciate your efforts in getting the word out, but if I may just say that sometimes less is more, especially for those of us with Fibromyalgia and brain fog.
Best,
Lorraine
Sorry for my grammatical and typing errors. I’m on windows 10 and I’m lucking if I can stay on the page. I hate this software! I was bounced off several times while typing the above and my screen zooms in and out too.
Dr. Stasha Gominak (neurologist) has interesting things to say about sleep disorders, the reason why we turn to benzo’s in most cases.
I think this strongly demonstrates that our own individual experiences, especially those that are distressing and cause significant suffering can drive a great determination to get to the truth of the matter. Stephen has done a wonderful job alerting the CFS/FMS community about the use of benzodiazepines, especially Klonopin/clonazepam, and all the potential scenarios involved with use of this drug. I applaud him for sharing the information/research/personal experiences with us. At least, in my case, if I make a definite decision to get off clonazepam at some point, as my current neurologist has urged me to do because I am 71, and I have taken the drug since approximately 1999 at 1 mg at night for sleep. I was living in Houston when I started the drug, and my physician was also Dr. Patricia Salvato, as is Stephen’s. I believe Stephen may have even educated her on his findings.
As more recent research has demonstrated, it has a great potential for causing dementia. That’s why my neurologist has strongly recommended I get off it. However, she gave me no guidelines for doing so. I’m grateful that if I do decide to attempt that, Stephen has also provided the contact information of an experienced pharmacist who can guide the withdrawal in conjunction with one’s own doctor/provider.
BUT, am I willing to get off Klonopin now? I don’t think I am. I readily took to it, and after years of poor or no sleep, even before my acute attack of CFS (I was already diagnosed with FMS in late ’80’s), and after trying ALL sorts of drugs that had terrible, debilitating side effects, I was elated when I started Konopin at 1 mg (two .5 mg tabs) at night, along with only 200 mg gabapentin for restless legs. After considering Stephen’s information about daytime withdrawal from clonazepam because of the 12 hr. 50% half-life, I may give it a go to either divide my dosage, with 1 mg PM, and 1 mg AM, OR, since my primary doctor’s prescription is written for a max of 3 tabs/day, I can see if some of my disturbing daytime symptoms are related to clonazepam withdrawal by taking a .5 mg – 1.0 mg late AM or early PM. I do occasionally take a .5 – 1.0 tab mg during the day when my agitation/irritability and other symptoms are really uncomfortable. I’ve had no trouble doing so, and no apparent side-effects.
Well, this comment has become way too long! 😛 Wordy me. 😉
Obviously, this is a topic that is of great interest to many, and I’ve certainly learned a LOT, and consider myself armed with that knowledge to use in my future decisions regarding this category of drugs in the treatment of CFS/FMS. Thank you so much to Stephen, Daniel and all others who’ve commented here! Such a wonderful, sharing community on Health Rising. Cheers! Judith
Hi Judith,
It was the alarming media re the 2015 survey study re benzo.s and dementia that moved me to stop Xanax. However, a little more digging left me feeling that, thankfully, “…more recent research has demonstrated, it has a great potential for causing dementia.” was not true. Is there some small potential? We don’t know.
Conclusions from the scary 2015 Quebec study:
Study authors said there may be no causal correlation.
Even if there is a correlation, the vast majority of people would still be uneffected.
Short acting has less effect.
Limitations of the Quebec study:
The authors did not have access to information on socioeconomic status, education level, smoking or alcohol consumption, and so could not adjust for those factors.
Benzodiazepine use might be an early marker of a condition associated with increased risk of dementia, rather than the cause.2,3
From medscape:
Studies focusing on the association between benzodiazepine use and dementia or cognitive decline in elderly people have shown conflicting results.[17] Some found an increased risk of dementia or cognitive impairment in benzodiazepine users,[9, 18-21] whereas others were not conclusive or reported a potential protective effect.[22-27]
A literature review of past studies:
Psychol Med. 2005 Mar;35(3):307-15.
Is benzodiazepine use a risk factor for cognitive decline and dementia? A literature review of epidemiological studies.
Verdoux H1, Lagnaoui R, Begaud B.
Author information
Abstract
BACKGROUND:
A major public health issue is to determine whether long-term benzodiazepine use may induce cognitive deficits persisting after withdrawal. The aim of the present review was to examine findings from prospective studies carried out in general population samples exploring whether exposure to benzodiazepines is associated with an increased risk of incident cognitive decline.
METHOD:
Using a MEDLINE search and a hand-search of related references in selected papers, we retrieved original studies published in peer-reviewed journals that explored in general population samples the association between benzodiazepine exposure and change in cognitive performance between baseline and follow-up assessment.
RESULTS:
Six papers met the inclusion criteria. Two studies reported a lower risk of cognitive decline in former or ever users, two found no association whatever the category of user, and three found an increased risk of cognitive decline in benzodiazepine users.
CONCLUSIONS:
The discrepant findings obtained by studies examining the link between benzodiazepine exposure and risk of cognitive decline may be due to methodological differences, especially regarding the definitions of exposure and cognitive outcome. As a large proportion of subjects are exposed to benzodiazepines, a small increase in the risk of cognitive decline may have marked deleterious consequences for the health of the general population. This issue needs to be explored further by pharmaco-epidemiological studies.
PMID: 15841867 [PubMed – i
It seems that all things related to benzo.s, and all drugs, are complex and require serious thought and consideration. Which is, of course, what we are all doing here.
Thank you SO much, Christina. I really appreciate your providing all this information! I did a more generalized Google search a short time back, and was surprised that I did not find much of the alarming information about a strong correlation between benzos and dementia. Your search is much more in depth and scientific based on studies. I don’t wish to play “Russian roulette” with my brain, but I’m not yet convinced that I’m ready to go off a drug that has helped me so much, and for which I have no idea what to use in its place if I were to go off it; though I’m sure I could find some things that would substitute, even if they didn’t work as well. I’m going to print out your information, and use it to keep up with potential newer information as it becomes available. You are so thoughtful to share these detailed findings! 🙂 Judith
Thank you for your kind words, Judith. I must confess that I had the info at the ready from my anxious searching when the 2015 study hit the news. It really scared me. With time, and more information, I was relieved and reassured… for the most part. Nothing in life is risk free, is it.
Again, thanks for your lovely response!
c
I had similar negative experiences with Klonopin and also Neurotin (Gabapentin). I took these drugs for insomnia but quickly built a tolerance to them (Klonopin 2 weeks, Neurotin 4 weeks). The withdrawal from Klonopin lasted about 3 months and the withdrawal from Neurotin lasted 6 months and was a virtual hell of anxiety and depression along with other symptoms I don’t care to remember. I basically toughed it out but I remember wondering at times if I could make it through the next 5 minutes, let alone the next day. I think there is a subset of folks with CFS/FMS that are extremely sensitive to pharmaceuticals of any kind. This may be due to a couple of things: 1. abnormal liver function with rapid phase one detoxification and 2. dysautonomia, which is worsened by taking sedative type drugs.
Darden mentions Phase One rapid detoxification: Guessing this means he knows the results of his 23andme DNA test? I think it’s important to know genetic status before taking any medication; much data exists now to help people who want to take more charge of their own wellness.
Genetics will almost certainly determine reactions to benzos, along with other meds and supplements taken. A compounding pharmacist told me never to take GABA for sleep at the same time as clonezepam because they would cancel each other out (agonist effect). So after five hours’ sleep with GABA, other aminos and herbs, I wake; then the 1mg clonozepam gives me the remainder of the sleep needed. Brain Training scans show heavy Delta deep sleep brainwaves during the day, however, but that may be a result of longterm pathogen invasions in the brain and vagus nerve.
A visit with an antsy psychiatrist revealed that having sleep apnea and taking clonozepam, even 1 mg., could be lethal, she said: Possible cessation of breathing already compromised could occur.
Was able to taper to 1 mg. from 2 by myself during a year but I think I probably paid for it; still not possible to determine what symptoms come from detoxing protocols/Herxing, pathogen attacks or reactivation, new Lyme infections in our lovely paved over wetland paradise here. Cheney’s defense of Clon. article some years back can still be found on the net. Not able to tell whether the severe bouts of depression and anxiety are due to over ten years’ use; there are plenty other possible causes, including those multiple pathogens that never started leaving until I took a new natural oxygen delivery system that delivers pathogen-killing 02 right into the cell mitochondria. Seems to be having strong effects. And after taking the gut rebuilding fulvic earth product Restore, it seems clonozepam is leaving the system more slowly and having more of an effect with the gut walls rebuilding their integrity. Clonoz. effects change; sometimes it makes me hyper focused, and other times just sleepy.
The compounding pharmacist, who used to be a manufacturer, denies that the name brand and generic forms have different effects, but many still claim there is a difference and that the name brand is stronger per milligram.
Wonderful, useful article to download and keep for monitoring this crazy stuff that never should have been prescribed in the first place. Trudy Scott’s website Every Woman Over 29 has great free webinars on using amino acids to keep off benzos and other potential habituating poisons, and much info about people exiting from benzos. There are alternatives to pharma meds that can be lifesaving.
Darden, I wasn’t happy about using Neurotin (Gabapentin) as a trade off for Klonopin as suggested by a psychiatrist. Just to have another medication to get hooked on knowing my sensitivity.
I was placed on 400 mg of Gabapentin.
I decided to go off it cold turkey. I had a very hard time moving or speaking for a few days thereafter.
In the words of former President William Jefferson Clinton, “I feel your pain.”
Oh my goodness, what a nightmare for you.
I have taken ativan off and on but after the last time I realized how difficult it was trying to stop. I eventually did. Now taking anything at night aside from cesamet gives me horrific , in-you-face-vibrant dreams (PTSD). I’ve tried increasing cymbalta and re-starting trazodone-same situation. So I put up with wakeful nights for a few then I get so exhausted I’ll sleep beautifully for 2-3 nights then repeat.
Yes, many of us with ME/CFS have terrible problems with medications.
Does anyone know of any miracle doctors in the Central Florida area? I have so many issues, depression, anxiety, PTSD, insomnia, then the fibromyalgia followed by any kind of “itis” total digestive system. Osteo, Rheumatoid Arthritis. You name it, it’s there.
I have been on a combination of Prozac, Wellbutrin and Klonopin for over 20 years. I take 3 1 mg tabs a day. I also take muscle relaxer, tramadol, topamax,
I’m constantly anxious, stressed out, one thing away from having a fit and swiping everything off my desk.
I’m so sick of all of this but there are no doctors here that you can go to that even explore any else if you decide to go to another doctor.
One more thing, I ran out of Klonipin and decided I wouldn’t refill it, I’d save the money. Worst week of my life. Don’t ever try to cold turkey it.
For an intro: Thanks to pre-and postnatal vaccines and a gradually chemical-ridden toxic environment, I have had chronic illness without interruption since birth. These days my health and brain seem to be better than many younger people whose stories I read who have been sick for ten years or more, for example. I started working my way into natural health practices before I was twenty.
Sometimes it’s necessary to leave a conventional medical system if it is not working for you, or get a truly holistic one. There are lots of good doctors out there but a miracle doctor does not exist for anyone. Those I know who are getting some slow but steady forward movement are doing their own research and finding new doctors willing to work with them. Meds can provide relief and also cause terrible, sometimes permanent, damage and side effects. Good doctors exist, and it takes practice to develop the skills to boost their stressed confidence level while getting at least some of what you need. Environmental doctors are aware of the many issues that morph into what is called SEID, ME, NEID, and all the rest of the names whose symptoms match or overlap with Lyme. Lyme people are even more frequently left for dead or land as wastebasket diagnoses, as are the Mycotoxin people. No one will recover from this nightmare disease without taking charge of their own medical care with consistent habit change; it is too complicated for the conventional limited medical model. Doctors can provide palliative care, but the patient must partner with them IM experience. There will be no one miracle cure for this complex condition, although there may be some kind of help on the horizon. Taking charge a bit at a time of one’s own health by cleaning up the body bioterrain (non-GMO alkaline diet, chemical-free environment increasingly put into effect, stretching, pure water and all that etc.) give the docs something to work with. And self-care needs to be flexible as individual biochemistry and genetics is. I think those who get familiar with their genetic test will have the best results; this is part of where holistic medicine is going anyway. Genetics and yes, woo energy medicine carefully applied! So many get relief from acupuncture, and there are low-cost clinics at many schools… The American Academy of Environmental Medicine online can give the names of doctors in the Central Florida area.
Everything that you said makes total sense and believe me if I took home more pay than I do now, if the insurance that I pay so much for would give us at least the option to go to a holistic or naturalistic Dr. I’d be there in a second. I don’t think I can even see a physicist and very few DO.
Stephen,
Our CFS/ME stories, along with benzo detox and withdrawal, are so similar it’s eerie.
I began taking xanax as prescribed when I was a freshman at college in 1999. It was prescribed for acute panic disorder and GAD (generalized anxiety disorder). I had been taking xanax, along with a variety of other prescribed benzos for these anxiety disorders, up until March of this year (ie 17 years). I also was taking insanely high prescribed amounts of pain medication for the past eight years as a result of a car accident.
So, benzos for 17 years straight, with opiates for the latter 8 years as the icing on top, so to speak.
I forgot to add — I too was diagnosed with Mono in 2001 while I was an undergraduate. As it happens too often, the Mononucleosis turned into CFS/ME. I have been about 75% housebound and 50% bedridden during the last 7-8 years — the car accident, with all it entailed, sent me into a terrible emotional tailspin and I subsequently checked myself into a psych ward for suicidal ideation. The stresses of the car accident and legal implications along with the CFS were just too much for me to take.
Anyhow, to stay on topic — in March of this year I checked myself into a local detox clinic to come off the benzos and opiates — my GP strongly recommended I do this and I thusly followed her instructions. Little did I know what hell awaited me. Coming off 18 years of daily benzos alone would be be hellish enough, but to compound the benzo detox on top of opiate detox was pure insanity. I was in the clinic for a week. From the very moment I checked in they took me entirely off the opiates (albeit they substituted the opiates with ONLY 5 days’ worth of Subutex), and reduced me to .5mg xanax once every 12 hours. I had been taking approximately 2mg Xanax daily. I went through nothing short of physical and mental torture from the withdrawals.
I’m glad and proud to say that I am off the pain pills and never want to see another one. The benzos, as I have found out, are a necessary evil for me as I have a strong genetic predisposition to anxiety disorders. So I am back on a benzo, but planning on cutting it back — SLOWLY — in the coming months, outpatient, with my psychiatrist’s help. I also seeing a wonderful psychologist who is helping me with CBT and management techniques for my anxiety.
Also, wanted to congratulate you on getting your law degree in spite of CFS. I too went back to school and received my masters in Social Work.
Thanks for sharing your experiences with attempting to withdrawal from benzos. Drugs are deadly serious, even when taken as prescribed. We should all become more vigilant and knowledgeable about what we are putting into our bodies.
Take good care of yourself and with best wishes for your withdrawal,
Bridget
Not only is it different from person to person, it also depends on the health status. I made several unsuccessful attempts to quit my low dose klonopin / lunesta regime while I was still very ill with ME/CFS. Subsequently, I was treated with Rituxan and Valcyte and my illness got much, much better. After I felt better, I attempted to wean off the sleeping pills by gradual pill cutting and this time I was successful. It took a few months and wasn’t a complete picnic, but it was much, much easier than when I was sick and fragile.
Really interesting David and good to “see” you again. It sounds like you’re doing better. That’s good to hear.
I have severe ME and chronic Lyme, and I successfully tapered off long-term Klonopin using water titration. Here is the story of how I did it:
https://www.dropbox.com/s/0rwswhgkn1m9d9s/Klonopin%20_taper_long_FINAL.pdf?dl=0
Being prescribed Xanax for my CFS/M.E was literally the worst thing that’s ever happened to me. When I was taking it, all it did was fool me into thinking that I could do more than my body was able to do and over time my CFS/M.E just got worse and worse.
I took my last Xanax pill 2 years ago and I am still suffering intense withdrawal symptoms today. My CFS/M.E was 5/10 before taking Xanax, now I’m a 10/10 completely housebound.
I disagree with the idea that only a fraction of people have a problem with coming off these drugs, there are countless forums some with over 100,000 members all of whom have had their lives ruined by benzos, and they’re not just limited to long term users either. Check out the Ashton Manual if you want to know what you can expect from your withdrawal, I wish I’d known what I was in for!
Benzos are no cure CFS/M.E they are like a putting on a plaster/bandaid only to find that when you try to take it off you’re left with a worse wound than you started with. Doctors treating CFS/M.E with this poison should have their licenses taken away IMO. As for people saying “oh but I feel better for taking it” you’d also feel pretty damn good if these doctors were prescribing you heroin doesn’t mean it’s healing you, and like heroin you can expect a horrendous withdrawal when you eventually have to stop taking benzos for one reason or another.
All guidelines say that these drugs shouldn’t be prescribed for more than 4 weeks AT MOST, and that’s for good reason. They mess you up! They drastically alter the chemistry in your brain, and it takes your brain a long time to find balance again.
Do yourself a favour and stay well clear, I’m talking from experience. Anyone in this thread speaking well of them, doesn’t seem to have to have tried living for a long period of time without them. Make of that what you will.
Sorry for my tone, but benzos litterally ruined my life, and if this comment makes one CFS/M.E sufferer avoid doing what I did, it will have been worth it.
Sorry to hear you had and are having such a tough time but thanks for sharing your story.
How long did you take them and did you taper off?
Thank you for sharing such an insightful article about your journey to wellness. If you’re still reading this thread, I’d like to ask you if you ever tried nutrition therapy through a licensed nutritionist? I’ve been trying to get off some prescriptions from a psychiatrist who sounds eerily similar to the one you had (based on your comments of the things he/she said), and I’ve finally begun a radical change in my diet and exercise for which my Nutritionist says I can get off these drugs. So far I’ve been successful in making some dramatic reductions, but very nervous about weaning completely off. I just wonder if you ever made any changes to your diet or tried vitamin supplements or nutritional detoxing to lessen the withdrawal?
Benzos ruined my life, I was prescribed them for GAD with opiates for headaches. I suffered mania while on this concoction, and behaved and acted in ways that made me unrecognisable to my former self, the ramifications have been huge. I would not wish this on my worst enemy.
I was on klonopin for 7 years and this incompetent psychiatrist took me off cold Turkey (I was on 1.5mg) He insisted that “the withdrawal window had passed” after 2 weeks even though my condition was worsening. I am someone that has a high tolerance for CNS depressants and am incredibly sensitive to withdrawals.
3 months later I am now almost completely bedridden due to fibromyalgia like symptoms, am unable to sleep through the night, my panic attacks and agoraphobia are worse than ever as is my cyclic vomiting, and I get episodes of orthostatic hypotension with tachycardia that have caused me to collapse. In addition, I have a “low grade fever” of 99.2-100 almost all the time. The psychiatrist told me I was drug seeking and most likely had an autoimmune disease, even though I’ve been tested several times throughout my life for one with nothing and refuses to believe that protracted benzodiazepine withdrawal is a real thing.
I’d rather be on klonopin the rest of my life so I can go back to work rather than deal with this and the stigma that comes with it.
Did you recover?
Thank you so much for this information. I have been looking for help for years. I have had no success in finding a doctor that understands how sensitive I am to benzos. I need help and have tried so many ways to stop taking benzos. I get extremely ill and cannot eat or sleep at all. I am not exaggerating so I seem stuck in an endless circle. This gives me so much hope. I am one of the few who have extreme reaction to trying to stop this medication that helped for a short time and has turned into a complete nightmare. I am desperate to get off the endless treadmill and feeling so depressed and hopeless.