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The Best Drug for ME/CFS? The Other Side of Klonopin: A Patient’s Story and A Survey

Clonazepam-Klonopin-me-cfs

Posted by Cort Johnson

Klonopin  (Clonazepam) may be the most commonly used drug in chronic fatigue syndrome (ME/CFS). Dr. Cheney hailed its use, putting the drug in the ‘neuroprotector’ column because  its ability to reduce  sensory nervous overload gave the brain, he thought, a chance to rest and rejuvenate itself.  Dr. Bell agreed about its value, stating “For years I have said that Clonazepam is perhaps the most useful medication in chronic fatigue syndrome”.

Indeed, studies have shown that the brains of ME/CFS patients have difficulty ignoring innocuous stimuli and some researchers  believe that  ‘central sensitization’ – a kind of central nervous system hyperactivity – is present in ME/CFS.

Klonopin’s effectiveness as a sleep aid and calming agent is clear but its potential negative effects have been less well-reported. The problem is that taking  Klonopin over time can, like all benzodiazepines, result in tolerance (the drug is not effective at the original dose any more), dependence (inability to stop the medication without side effects) and, in rare cases, addiction. Wikipedia reports that something called ‘benzodiazepine withdrawl syndrome’ 0ccurs in about a third of people treated with Klonopin (clonazepam) for longer than four weeks.

Benzodiazepine withdrawal is considered more hazardous than withdrawal from opiates and benzodiazepine  withdrawal syndrome can result in anxiety, irritability, insomnia, sensory disturbances, headache, nausea, thoughts of suicide, etc. and even in very rare cases, seizures. Ironically, some the symptoms of benzodiazepine tolerance such as anxiety and thoughts of suicide can lead uninformed doctors to increase a patients dose.

Dr. Cheney and Klonopin

Dr. Cheney’s 2001 view of Klonopin (http://www.prohealth.com/library/showarticle.cfm?libid=8021) , well elucidated in a report from Carol Sieverling, (not reviewed by Dr. Cheney but which he accepted for publication), has dominated the ME/CFS literature on  the web.  (It is the first item that comes up using a Google Search for Klonopin and chronic fatigue syndrome.  The Phoenix Rising page on Klonopin, which also shows up high on search results, which is partly based on that article, has presented Klonopin in an almost wholly positive light up until now.)  In fact, after reading Dr. Cheney’s recommendations Gabby’s doctor, who had CFS, himself, used Klonopin personally with success.

In this report Dr. Cheney was leery about calling Klonopin ‘habituating’ or stating that it could cause ‘dependence’ or withdrawal symptoms.  (Dependence occurs when coming off a drug results in side effects). He  felt ME/CFS patients with healthy brains could easily come off the drug but stated that if their  brain was still injured coming off it could cause “all hell to break loose”.  He didn’t feel that was a sign of ‘dependence’ – a  relatively common occurrence with long-term use of benzodiazepenes -but instead meant the patient should still be on the drug.

 “When a CFIDS patient who is still experiencing the underlying mechanisms of brain injury goes off Klonopin, there is a burst of excess neural firing and cell death. That’s the havoc we hear about that is mistakenly called withdrawal.” 

Dr. Cheney suggested doubling the dose during severe relapses and  felt the only downside of  too high of a dose of Klonopin would be to  impact one’s in ability to function, which would be ‘inconvenient’ but would actually put them into a ‘healing state’. According to Carol Sieverling he stated that “You may feel like a zombie, but your brain is protected and your neurons are not getting fried. “

Gabby’s Experience

 Gabby (Nielk on the Phoenix Rising Forums) had a different experience.  She agreed  to her doctor’s recommendation that she up her dose (to 3 mgs/night), only to find her old symptoms worsening over time and new ones (high blood pressure) appearing.  Her withdrawl from 8 years of high-dose Klonopin use ultimately landed her in a month-long  stay at a detox clinic in Florida.  As Klonopin slowly washed out of her system Gabby’s pain,  fatigue, blood pressure,  mood and sleep symptoms improved.

Not a “Do Not Use Klonopin” Blog 

The intent of this blog is not to have people not use Klonopin or to get off it if they are using it.  Klonopin works very well for some patients; it may, in fact, be the most prescribed drug for chronic fatigue syndrome. All of our physician commentators pointed out that different patients react differenty to drugs and Dr. Klimas pointed out that low doses can have markedly different effects from high doses.

The intent is provide some balance to what up until now has been the almost universally positive information present on Phoenix Rising (and other websites) and to make patients aware of warning signs so that they can avoid Gabby’s situation.

In order to provide some perspective  we asked three experienced  physicians (Dr’s Bateman, Lapp and Klimas)  to comment on her story. A general theme  emerged from their comments….all use the drug conservatively and warned about long-term use.  Several noted that Gabby’s higher than normal dose, and her very negative reaction were not typical.

GABBY’S STORY: KLONOPIN USE AND WITHDRAWAL

Klonopin is an anti-seizure medication that is in the Benzodiazepine family of drugs. In addition, its uses include a mood stabilizer, a tranquilizer and a sleep medication.

Patients who suffer from ME/CFS are often prescribed Klonopin to help with their insomnia and with their “neurological wired symptoms”.

Klonopin: How it works

Klonopin is a central nervous system (cns) depressant. It enhances GABA which is a neurotransmitter in the brain and tells neurons to slow down or stop firing. As a consequence, the brain’s output of excitatory neurotransmitters, including norepinephrine, serotonin, acetyl choline and dopamine, is reduced. These neurotransmitters are necessary for normal alertness, memory, muscle tone and co-ordination, emotional responses, endocrine gland secretion, heart rate and blood pressure control.

Klonopin comes with a warning to be used only as a short term treatment. Long term treatment may cause dependency and tolerance for its users.  In fact, researching this drug, I found out that a third of the people taking it long term – meaning six weeks or longer, become dependent/tolerant to it. After 6 months of use this number jumps to 50% of users.

Klonopin, as well as all Benzodiazepine drugs have a very difficult and dangerous withdrawal course.

My story of Klonopin use as an ME/CFS patient:

I have been ill with ME for the past 10 years.  Gradually, my symptoms worsened and I had to stop working and go on disability. I developed severe insomnia and had a sleep study taken in a hospital setting. The results of the study showed that I had many alpha wave intrusions. My doctor said that this is consistent with a CFS diagnosis which shows “neurotoxicity” of the brain. I was told that Klonopin is the most effective treatment for this and that my insomnia needed to be treated in an effectual way because sleep is the most important treatment for this illness.

I started taking Klonopin about 8 years ago. At first it was working well as far as my sleep was concerned.  After a while, I became tolerant to the dose and my doctor increased it in order for it to continue working. This had to be done a number of times in order for it to remain effective.

Six years ago, I started reading about the dangers of Klonopin and Benzodiazepine drugs in general. I refused to increase my dosage which had been at the time 3 mg a night.  Because I had become tolerant to the drug it was not working for me any longer.  My doctor prescribed Ambien for sleep.

I was kept on my Klonopin dose of 3 mg a night because I could not reduce it in a safe way. Throughout the years I had tried at different points to slowly taper off with no success.

My problem with Klonopin Use

This past year has been my worst year yet as far as my ME/CFS is concerned. I had spent most of my year bed bound. I was in constant chronic pain. My headaches were severe and left me non-functional.  I was not sleeping well and it was rare that I could get out of the house.  I became depressed about my situation.

The past few months I had a new symptom of feeling edgy and my blood pressure, which has been low all the years of my illness, had increased to a high level.  I started to look into these symptoms and found that one could suffer from symptoms of withdrawal from Klonopin just by remaining on a current dosage.

By then, besides feeling very edgy, I had become depressed too. I asked my doctor to help me taper off of the Klonopin.  He tried by giving me Viibrid,a new medication which is an SSRI in addition to a 5HT1A receptor partial antagonist. He said that I need to build up my dosage of Viibryd in order to have a “safe” taper of the Klonopin. This didn’t work for me at all. I had a bad reaction to the Viibryd or maybe it was the combination of the Viibryd and Klonopin. I fell into a very dark, deep depression where I became suicidal. This feeling continued even though I had discontinued the Viibryd.

Another doctor tried to help me by prescribing Valium in order to help me withdraw from the Klonopin which backfired on me too. I had a paradox reaction to the  Valium. In lieu of calming me, it increased my anxiety. I had to discontinue its use.

At this point, I felt totally stuck. I was suicidal. I knew that it was caused by the Klonopin but, even great doctors could not help me withdraw from Klonopin.

I now know that I was not alone in this position of no return with Klonopin. There are other patients suffering from ME/CFS who have been on long term Klonopin and found themselves in this same corner and ended their lives! This is not a subject to be taken lightly.

My recovery from Klonopin Use

I was fortunate that, with the grace of God, I was given a name of a doctor who specialized in addiction.

My family flew me down to Florida to meet him and he right away put me in a medical detox/rehab facility. I stayed there as an inpatient for 31 days. The first two weeks were sheer torture. They took away my Klonopin and Ambien the first day and substituted it with the medication Tranxene which is an older medication with a longer half life.

My health and blood pressure had to be monitored very closely. I learned there that high blood pressure is a landmark withdrawal symptom of Benzodiazapine withdrawal. I remembered that the past few months I had been suffering from high blood pressure which meant that as I thought, I had been in a state of Klonopin withdrawal all this time.

The detox/rehab facility did a great job monitoring me closely and administrating blood pressure reducing medications as needed. I needed another two weeks for rehabilitation.

Today, two weeks out of the facility, I feel like I have been given a second chance in life.  I feel so much better. The only medication I am on is Trileptal which has no danger of becoming addictive.  Even though I still suffer from some withdrawal symptoms which might continue for another six months to two years, I feel like a new person. I am not bed bound and my constant pain has been alleviated.

My ongoing  withdrawal symptoms from KlonopinThe withdrawal symptoms still persisting include; sweating, nausea, agitation, lack of concentration, sensitivity to sound and touch, pins and needles and numbness.

These will hopefully diminish as time goes on.

Most people will not need such a “fast detox” like I went through. The slower one can taper off these Benzodiazepine medications, the safer it is. I did not have the “luxury” of time at hand. I was on a fast course to death and needed a quick fix to save my life.

I feel compelled to “tell my story” in order to help others and warn them of the very real possible dangers of starting on the road of Klonopin consumption.

I wish someone had warned me before I took my first dose of this dangerous drug.

Used or using Klonopin or other benzodiazepines? Let us know how you did. Please take the Phoenix Rising Klonopin/Benzodiazepine Survey here

Dr. Klimas’ Comments

It is a compelling story.  I would think it’s well worth publishing, with the comments that note that her dosage was significantly higher than typical dosing and that her story  demonstrates something often seen in medicine , that drugs at a low dose can have a completely different and sometimes opposite effect that the same drug binding to the same receptor at a high concentration. The biology has to do with low affinity and high affinity receptor binding – much like the low dose naltrexone vs high dose naltrexone having quite different biologic effects.

Of course at the high dosing you also run the risk of a host of other toxic side effects, and with the valium derivatives increased fatigue, less restorative sleep and slower cognition.   I won’t say I don’t prescribe them, but I try not to, and always at the lowest possible dose.

The other take home point here is the utility of a detox unit to get a patient with a long and potentially dangerous drug list down to a simpler regimen, allows one to see how many of the symptoms are an accumulation of side effects, and what is the baseline illness.   It can be life saving in the case of patients with severe depression side effects to regimens that are meant to help, but are in fact doing harm.

And finally, its important to understand that every individual metabolizes and responds to medications differently, and the clinician needs to know if unexpected things are happening,  None of us want to do harm, but trying to help often involves trying a number of different approaches, one at a time to see if it is safe and has some effectiveness.

Dr. Bateman’s Comments

Clonazepam is definitely a “double edged sword”. It calms the central nervous system (CNS) but has habituating properties. Because people with CFS may have central sensitivity, reducing the dose (once habituated) can be very difficult, causing markedly amplified withdrawal symptoms. I also think most don’t realize that the long half life of this drug causes pervasive effects on daytime fatigue, cognition and sometimes mood. For this reason I prescribe it sparingly and generally don’t exceed 1 mg at bed.

Clonazepam, like any other drug, it neither Evil nor Good. One must simply learn about how the drug works and use it with expert guidance.

It’s also good to remember that for every drug there is a range of response. For one it may be a great solution and for someone else a disaster.

Dr. Lapp’s Comments

The story is worth printing because it points out the problems of using Klonopin (or benzodiazepines) for long periods of time.

There are a couple points to make:

1.  It was an ominous sign when tolerance developed, and it would have been prudent to taper off Klonopin at that time.

2.  I generally do not recommend night-time doses  of Klonopin greater than 2mg, because too high a dose of Klonopin can actually interfere with sleep rather than help.

3.  Please recognize that this patient was atypical in her response to medications such as Viibryd and diazepam.  Most patients can be withdrawn from Klonopin without such difficulty.

4.  The use of Tranxene is the accepted method of withdrawal.  Please note that Tranxene is SHORT acting. Thus a short-acting drug is substituted for a long acting one, and then the Tranxene must be withdrawn.

If you decide to publish this story, please make it clear that some individuals MAY have such difficulty withdrawing from benzodiazepines, but she had unique issues.

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{ 83 comments… add one }

  • MishMash July 9, 2012, 2:02 am
    satoshikasumi
    Cort

    My contention focused on information on Klonopin and ME/CFS, not Klonopin and other benzodiazepines in general. There's plenty of information on benzodiazepine problems in general. If you do a google or bing search for Klonopin and CFS you'll see sites, Phoenix Rising is one of them, that say little about problems that can occur with high-dose long term use. The Cheney piece on Prohealth has almost a 1,000 votes; nothing in that piece suggests that longterm use of high dose Klonopin can cause someones symptoms to worsen; if I was a doctor using that article – as Gabby's doctor did – I would probably do what he did – which was to up her dose when she felt worse. It was to provide more perspective on Klonopin use in ME/CFS specifically that this piece was done.

    I agree with you that Cheney's glowing post set the stage for a lot of false expectations. Other ME/CFS doctors have simply stated that klonopin can be useful and is frequently prescribed for the conditions.

    Cheney is somewhat troublesome. He was a colleague of Dr. Peterson's at the time of the original Tahoe outbreak, but the two have long since parted ways. Peterson's approach while hardly conservative is characterized by a focus on rigorous scientific methodology, reluctance to stray from allopathic medicine, and the pursuit of just a few theories of pathogenesis related to viruses and the immune system.

    Cheney has delved into and promoted almost every imaginable "theory" for how CFS might be caused and treated, sometimes based on limited evidence but other times based on speculation. I have read pieces by him promoting undenatured whey protein, klonopin, diastolic heart dysfunction, and stem cell treatments. Unfortunately, mere patients cannot distinguish when he is making stuff up and when he is talking about scientific findings.

    In the klonopin article you speak of, he strongly asserts that klonopin and neurontin protect the brain from the excitotoxic damage caused by ME/CFS. He implies that if you don't take klonopin, you will suffer more brain damage. There is absolutely no clinical or even in vitro evidence to support these claims. He is just speculating.

    In another article, he states that SSRIs and stimulants will damage the brain in CFS patients and patients should always avoid these drugs. More speculation.

    The truth is, many doctors agree that klonopin helps CFS patients feel modestly better. Many doctors have also noted that SSRIs and stimulants can help selected patients, modestly. It is not known whether any of these medications alters the long-term cognitive effects of the disease. Most likely, none of them change the underlying brain pathology. It is likely that the expensive studies needed to answer these questions will never be done. There are no reports of dramatic recoveries with any of these medications.

    All of the ME/CFS specialist docs do that. Every idea that comes along, they glom on to it and say what a wonderful discovery it is. Cheney is just a little more imaginative than most.

    I haven't met any patients who have taken stimulants or anti-depressants and been "helped" by them. Mostly just the opposite.

  • MishMash July 9, 2012, 2:08 am
    heapsreal
    MishMash

    Calathea,

    You did not say whether you were a ME/CFS patient or not? Since you mentioned sleep problems, I'm guessing you are. Disturbed and unrefreshing sleep is an important marker for ME/CFS.

    After detoxing did your sleep go back to an acceptable state? Did your ME/CFS symptoms improve? Other than not being addicted to Temazepam, what has improved or changed?

    Had you become addicted to Temazepam, what would have been the worst outcome? What would have been the harm withdrawing from it a year from now? A decade from now? Or thirty years from now? Other than improved sleep for the duration, that is.

    Are you on disability or do you still work? I ask this question because when on disability the necessity for sleep becomes much less urgent. People who must follow a daily schedule of work would find it extremely hard, if not torturous, to find any quality of life on two or three hours of fractured sleep per night.

    According to the UN forced wakefulness as a form of torture is banned by international treaty. Verified consequences of continuous wakefulness include hallucination, psychosis, suicidal ideation, and sometimes irreparable depression and PTSD.

    I wonder how your detox would compare to going an indefinite period with little or no sleep? For example, going a month getting two hours sleep per night. While trying to hold down a job. Along with your other ME/CFS symptoms. Two really bad choices. But choices that people like me have had to make.

    As I have said exhaustively, there are very, very few alternatives. There are no effective treatments for ME/CFS. If there were we wouldn't be reading this now. We would all be getting infusions of Ampligen or Rituximab or whatever. None of that works now. There is hope, that's about it.

    Like Cort, you stated that you aren't anti-benzo. You, Cort, Gabby just want "doctors to be very, very careful" when prescribing. But we know the doctors are not going to grasp the fine print of such an oblique, nuanced statement. A doctor simply cannot predict when Ms. Nielk is going to have a horrendous neurological reaction. They are simply going to stop giving them to patients who need them. That has already started to happen.

    As for "benzo.buddies", I don't believe most stories submitted by admitted drug addicts on a web forum. The excuse "I didn't know" and the "doctor gave them to me" among that group is simply not compelling. I have been around enough alcoholics and drug addicts to know how they rationalize. They are probably not admitting their own role in experimention and getting high with such drugs, probably starting at a very early age. Probably using drugs at school, stolen from parents, buying on the illegal market, etc..

    A reasonable doctor should expect his patients to know about the potential for benzo habituation. What do Jimi Hendrix, Janis Joplin, Jim Morrison, Kurt Cobain, Heath Ledger have in common? It is simply impossible for a senscient not to know about the dangers of drug abuse, overdose. A patient would have to be living in a cave to not know this. Which is why I question those who claim "the doctor said it wasn't addictive."

    Back in the 70s, my mother told us the stories of Judy Garland and Marilyn Monroe, "who killed themselves with those pills." Of course back then it was barbituates. They knew then, and everybody knows now. You cannot be alive and not know these obvious facts. It defies common sense.

    As I have exhaustively stated there are no alternatives to drugs like Klonopin. There are no effective treatments for ME/CFS. Cort and the blogger Gabby are well-meaning, but they are effectively pouring diesel fuel into the drinking water. It has effectively polluted the lifeline for the rest of us. If these drugs don't agree you shouldn't take them. Blogging or promoting questionable web sites just makes it difficult for those who are truly ill, and have no choice but to use them to get through each day.

    Valcyte has helped me alot and antivirals in general taking me from a 3 out of 10 to an 8 and i have only been on valcyte for 3 months with a few more months to go with hopefully more improvement. There are others who also who have made alot of improvement with antivirals, so dont know how u can say there is nothing out there.

    Honestly, Heapsreal, I'm really happy you feel better. I wish I could find something like that….and I swear I would never take any Klonopin, Valium or Temazepam every again.

  • heapsreal July 9, 2012, 2:41 am

    I havent sorted my sleep yet but if i can maintain or improve i will look at getting off sleep meds. I think there are treatments out there for some, depends if the issues can be found, with me it was obviously the herpes viruses like ebv/cmv. Just have to keep looking, hopefully get lucky and something will raise its head, sometimes i think it can be multiple things which makes it even harder.

  • Cort July 9, 2012, 2:14 pm
    taniaaust1

    Cort.. Im glad you have set up that survey with the doses to find out how much most with ME/CFS are taking so we can really see what is happening out there in the real world as far as it comes to us. Thanks.

    '
    Thanks – we have 86 responses so far – so we're getting some good information on this…The more the better…I haven't looked much at the pattern of responses – I want to wait until the survey is about finished…

  • Cort July 9, 2012, 2:20 pm
    satoshikasumi
    Cort

    My contention focused on information on Klonopin and ME/CFS, not Klonopin and other benzodiazepines in general. There's plenty of information on benzodiazepine problems in general. If you do a google or bing search for Klonopin and CFS you'll see sites, Phoenix Rising is one of them, that say little about problems that can occur with high-dose long term use. The Cheney piece on Prohealth has almost a 1,000 votes; nothing in that piece suggests that longterm use of high dose Klonopin can cause someones symptoms to worsen; if I was a doctor using that article – as Gabby's doctor did – I would probably do what he did – which was to up her dose when she felt worse. It was to provide more perspective on Klonopin use in ME/CFS specifically that this piece was done.

    I agree with you that Cheney's glowing post set the stage for a lot of false expectations. Other ME/CFS doctors have simply stated that klonopin can be useful and is frequently prescribed for the conditions.

    Cheney is somewhat troublesome. He was a colleague of Dr. Peterson's at the time of the original Tahoe outbreak, but the two have long since parted ways. Peterson's approach while hardly conservative is characterized by a focus on rigorous scientific methodology, reluctance to stray from allopathic medicine, and the pursuit of just a few theories of pathogenesis related to viruses and the immune system.

    Cheney has delved into and promoted almost every imaginable "theory" for how CFS might be caused and treated, sometimes based on limited evidence but other times based on speculation. I have read pieces by him promoting undenatured whey protein, klonopin, diastolic heart dysfunction, and stem cell treatments. Unfortunately, mere patients cannot distinguish when he is making stuff up and when he is talking about scientific findings.

    In the klonopin article you speak of, he strongly asserts that klonopin and neurontin protect the brain from the excitotoxic damage caused by ME/CFS. He implies that if you don't take klonopin, you will suffer more brain damage. There is absolutely no clinical or even in vitro evidence to support these claims. He is just speculating.

    In another article, he states that SSRIs and stimulants will damage the brain in CFS patients and patients should always avoid these drugs. More speculation.

    The truth is, many doctors agree that klonopin helps CFS patients feel modestly better. Many doctors have also noted that SSRIs and stimulants can help selected patients, modestly. It is not known whether any of these medications alters the long-term cognitive effects of the disease. Most likely, none of them change the underlying brain pathology. It is likely that the expensive studies needed to answer these questions will never be done. There are no reports of dramatic recoveries with any of these medications.

    Thanks – by the way I tried to edit my comment…in an earlier comment it appeared that I was referring to benzodiazepines in general – my mistake.

  • Cort July 9, 2012, 2:27 pm
    MishMash

    Calathea,
    As I have exhaustively stated there are no alternatives to drugs like Klonopin. There are no effective treatments for ME/CFS. Cort and the blogger Gabby are well-meaning, but they are effectively pouring diesel fuel into the drinking water. It has effectively polluted the lifeline for the rest of us. If these drugs don't agree you shouldn't take them. Blogging or promoting questionable web sites just makes it difficult for those who are truly ill, and have no choice but to use them to get through each day.

    MishMash I understand your concern and it is true that negative stories tend to stick in our minds more than positive stories. I really do think the survey is going to be very helpful in this area. I haven't looked at the results but I imagine some people will do very well on Klonopin – after all Dr. Bell stated at one point that its the best drug he's used for ME/CFS – and then there will be those who wouldn't touch it again with a 10 foot pole.

    I imagine that if we took at poll of people using all sorts of prescription drugs we'd find a similar pattern….I know people who are functioning due to beta blockers and others who felt like they were going to kick the bucket because of them..

  • jimells July 9, 2012, 4:28 pm

    I'm surprised and dismayed at the level of hostility exhibited by some of the posts on this thread, because it is (fortunately) so rare for this forum.

    I'm guessing this topic is so controversial due to society's self-righteous and judgemental attitudes towards drug addiction. After all, drug addiction is merely a moral failing, lack of discipline, and proof of laziness. All mortal sins, to be sure.

    After years of 12-step meetings, attempting to recover from being harmed by my father's addiction to alchohol, I have learned it is never appropriate for me to say, "You should do X", or "You should never do X". It is appropriate, and sometimes helpful for other people, to say, "This is what happened to me."

    It is unreasonable to expect sick people to do their own medical research, though many of us have been forced to. This is what doctors are very well paid to do. I wish more of them would actually do it, because I am tired of trying to be my own doctor.

    Despite doctors spouting platitudes like "You are the captian of your ship", refusing to follow the doctor's prescriptions, thus being labeled 'non-compliant', is a tricky business, potentially leading to denial of needed treatment by passive-agressive doctors. At least one doctor has threatened to withhold Imitrex, a common migraine medication, if I didn't "get the blood pressure under control". In fact, my BP is generally only high at the doctor's office, a fact they refuse to acknowledge. For me, lower BP is associated with being sicker, and I have never observed Imitrex to raise my BP.

    Neilk, thankyou for posting your story. I found nothing in the original post suggesting that no one should ever take klonopin. Making us aware of potential severe problems is entirely appropriate. I'm glad to read that you are recovering from what appears to be yet another example of iatrogenic harm.

  • Cort July 9, 2012, 5:04 pm
    taniaaust1

    I too thought Cort was being a bit harsh on this drug eg the title and the biased view with just telling someones horror story and not having a good balance there of maybe also sharing another persons postive experience of it.. thou he did then bring the balance up a bit more by adding the other ME/CFS specialists views and asking them… I was very glad he did that as that helped to correct the balance issue some. (thanks cort for doing that).

    I too worried that some who this drug may of helped may of been completely put off by PR seeming to support this drug is bad. (not all will be well enough to read the whole lot so may not get to see what the experts said at the bottom).

    From the title, it sounded the drug was completely at fault when there were so many other factors at fault in this story (Gabby not being one of them) esp the way the doctor prescribed… I hope you come to ssee you arent being fair to Gabby by blaming her for doctor error and for maybe a slightly biased article.

    Cort said he wanted to provide a balanced view to the community.. if that was so, both a positive and negative personal stories should of been presented. He thought people werent hearing this other side of things here so obviously I dont think he's realised how badly some of us have been harrassed at PR in shocking ways due to having postive experiences with this drug .

    There was also much sensible debate on the bad and good of this drug in the forums here in the past with the postive and negative experiences being shared in an unbiased way. This thou is certainly one kind of hot topic.

    (I was very badly harrassed and targeted and bailed up in PR chat over it in a threatening way in the past, just from sharing my more positive experience of this drug on the forums. Some have taken their negative experiences out on others who have had more postive ones. This hasnt happened thou the past few months so maybe the ones doing that got banned?).

    Maybe the truer message of this isnt this drug is "bad" (which seemed to be the original intent of this thread to some of us) but rather that we all need to take care with all drugs and maybe should be doing a little research ourselves if possible before taking ANYTHING. We always cant trust that doctors are going to know what is best for us and be always doing the right thing. Not all of us thou are well enough to be doing our own research… and no ones ever at fault for not knowing something that their doctors should know.

    Nielk.. Im so so glad to hear you are doing better now. Thanks for letting Cort share your story.

    I think if you'll go back and look at the piece, though, you'll see that the positive aspects of Klonopin were clearly stated in the beginning of the piece…as they are on the website…..and the major thrust of the article was that more information needs to be present on the potential downside of particularly longterm, high dose Klonopin use. Given the situation Gabby fell into that kind of information clearly needs to be present on chronic fatigue syndrome websites…

    Yes the title was provocative..and many of them are..I want to point out that the 3 physicians we contacted view and use the drug more conservatively than was suggested in the Prohealth post Perhaps the title was too provocative or perhaps it wasn't (I'm kind of back and forth on that myself; it was a question I had from the beginning)) but it helped get this discussion going and that's a good thing….

    Klonopin (Clonazepam) may be the most commonly used drug in chronic fatigue syndrome (ME/CFS). Dr. Cheney hailed its use, putting the drug in the 'neuroprotector' column because its ability to reduce sensory nervous overload gave the brain, he thought, a chance to rest and rejuvenate itself. Dr. Bell agreed about its value, stating "For years I have said that Clonazepam is perhaps the most useful medication in chronic fatigue syndrome".

    Indeed, studies have shown that the brains of ME/CFS patients have difficulty ignoring innocuous stimuli and some researchers believe that 'central sensitization' – a kind of central nervous system hyperactivity – is present in ME/CFS.

    Klonopin's effectiveness as a sleep aid and calming agent is clear but its potential negative effects have been less well-reported.

  • Sushi July 9, 2012, 5:12 pm

    MishMash,

    You say:

    There are no effective treatments for ME/CFS. If there were we wouldn't be reading this now. We would all be getting infusions of Ampligen or Rituximab or whatever. None of that works now. There is hope, that's about it.

    Have you tried all the treatments that various patients here report as having helped them? Even if you have, all you can say is that none of those treatments have helped you. There are many more treatment options than the few you have listed. True, no one has found a "cure" that works in the majority of patients, but there are many treatments that have helped a good percentage–including the antivirals that Heaps has written about.

    I have also been helped considerably by a combination of different treatments–including low doses of klonopin–…and yes I have been diagnosed according to the international criteria for ME.

    Sushi

  • CJB July 9, 2012, 5:12 pm

    There are so few drugs/therapies I've tried that have helped and Klonopin helped a LOT. Obviously, after reading this thread, I'm tapering off. And I wonder how many forum members/readers were scared into stopping cold turkey which sounds like it can be truly dangerous.

    Benzos have been around a long time and we know a lot about them. My doctor has trialed me on many of the SSRIs and newer classes of drugs that are supposed to help with sleep, pain, etc. They are horrible for me. No benefits and dreadful side effects.

    It's really painful to see this article and Gabby's story giving more doctors an excuse just to not prescribe drugs that are working for some of us. I read a story about one patient here who takes morphine. If I had a prescription for morphine, I'm sure I wouldn't need benzos. But I have yet to find a doctor who will prescribe any pain meds for ME/CFS, let alone morphine. If I was getting relief from ANYWHERE else, I wouldn't be taking benzos.

    Here's how it goes. Over=exertion = bad sleep = pain = more bad sleep = pain + depression = more bad sleep.

    Klonopin breaks the cycle. It relaxes my muscles enough so that they don't feel like they're trying to pull themselves off the bone. The way Klonopin makes me feel, it's not hard to believe there is some protective action during the really severe times.

    I will be interested to hear how the survey results turn out. And shame on any doctors who use one person's response as a blanket excuse not to prescribe this drug.

    jmells, it's not hostility, it's fear. Having found something that works, I'm afraid articles like this will cause doctors to be advised not to prescribe it because of one person's rather dramatic story of a health crisis that included Klonopin.

  • Sallysblooms July 9, 2012, 5:24 pm

    I agree with Sushi, I no longer have a problem with CFS. There are things that have helped many people. My POTS (Autonomic Neuropathy) is even improving.

  • CJB July 9, 2012, 7:29 pm
    taniaaust1

    Cort said he wanted to provide a balanced view to the community.. if that was so, both a positive and negative personal stories should of been presented. He thought people werent hearing this other side of things here so obviously I dont think he's realised how badly some of us have been harrassed at PR in shocking ways due to having postive experiences with this drug .

    There was also much sensible debate on the bad and good of this drug in the forums here in the past with the postive and negative experiences being shared in an unbiased way. This thou is certainly one kind of hot topic.

    (I was very badly harrassed and targeted and bailed up in PR chat over it in a threatening way in the past, just from sharing my more positive experience of this drug on the forums. Some have taken their negative experiences out on others who have had more postive ones. This hasnt happened thou the past few months so maybe the ones doing that got banned?).

    Maybe the truer message of this isnt this drug is "bad" (which seemed to be the original intent of this thread to some of us) but rather that we all need to take care with all drugs and maybe should be doing a little research ourselves if possible before taking ANYTHING. We always cant trust that doctors are going to know what is best for us and be always doing the right thing. Not all of us thou are well enough to be doing our own research… and no ones ever at fault for not knowing something that their doctors should know.

    Nielk.. Im so so glad to hear you are doing better now. Thanks for letting Cort share your story.

    That's been my experience as well — not being personally harrassed, because I don't post on those threads to avoid it. There are a few members who have had bad experiences with Klonopin, who are loud and vocal and assume everyone will react as they did. They shout down anyone who has benefitted. I was shocked to hear Cort say that he thought the negative aspects of the drug were underrepresented on the forum.

    Just a thought for those of you in the US. TALK WITH YOUR PHARMACIST about every new prescription you're taking. They are highly knowledgeable and are most happy to share what they know. They are the true experts when it comes to drugs, how to take them and interactions, side effects and signs of dependency. They are under-utilized for this purpose.

    And I think it's always a bad idea to turn over responsibility for any aspect of your life to someone else. Doctors are human beings with all of the attendant weaknesses, biases and imperfections. Not questioning them and giving them authority over your health is always a bad idea. Unfortunately, many of us don't have the ability to advocate well for ourselves. I usually need someone to go to the doctor with me because the effort of getting there usually leaves me just this side of incoherent (with or without klonopin:))

  • CJB July 9, 2012, 7:31 pm
    Sallysblooms

    I agree with Sushi, I no longer have a problem with CFS. There are things that have helped many people. My POTS (Autonomic Neuropathy) is even improving.

    Sorry, Sallysb, I don't know what Sushi said that you're agreeing with.

    I hope you will start a thread telling us how you healed.

  • Sallysblooms July 9, 2012, 7:47 pm

    I already have a thread about that.

    Sushi said treatments have helped some.

    There are some of us doing very well.

  • CJB July 9, 2012, 7:54 pm
    Sallysblooms

    I already have a thread about that.

    Sushi said treatments have helped some.

    There are some of us doing very well.

    Would you mind directing us to your thread?

  • Sallysblooms July 9, 2012, 8:28 pm

    It is called Sally's supplements. I have it bookmarked, but I am on my IPad right now.

  • taniaaust1 July 10, 2012, 6:38 am
    CJB

    Just a thought for those of you in the US. TALK WITH YOUR PHARMACIST about every new prescription you're taking. They are highly knowledgeable and are most happy to share what they know. They are the true experts when it comes to drugs, how to take them and interactions, side effects and signs of dependency. They are under-utilized for this purpose.

    Thought I'd quote that as I think that advice is so important to all.

  • taniaaust1 July 10, 2012, 6:43 am
    Sallysblooms

    I already have a thread about that.

    Sushi said treatments have helped some.

    There are some of us doing very well.

    For those who are looking for Sally's thread http://forums.phoenixrising.me/index.php?threads/sallys-supplements.13919/

  • satoshikasumi July 10, 2012, 8:22 pm

    Mishmash is not grasping the fact that there are treatments out there that have some efficacy, but the powerful members of society have made a decision that ME/CFS patients are not deserving of these treatments because they are too expensive and the disease is "trivial".

    Fewer than 1000 patients in the world have had the opportunity to try Ampligen, which was invented in the late 1970s. I am one of the lucky few.

    There are at least 800,000 debilitated by ME/CFS in the United States and as many as 17,000,000 patients worldwide. What gives?

  • K2 for Hope July 11, 2012, 7:58 pm

    Thanks to all who have contributed their stories, good or bad, on the use of benzo's and issues on withdrawals for ME/CFS patients.

    Also, thanks for the How-to's, if someone were to want to detox from benzo's for whatever reason.

  • MishMash July 11, 2012, 9:30 pm

    hi Cort,
    I think you should consider doing a mini-feature about the future of social security disabililty insurance. I've heard a lot of very dire talk in the news about cutting the rapid rate of increase in awarding SSDI to disabled people. I think it urgently relates to the topic of this post.

    More than 15 years ago, when I used to go to the CFS support group meetings, the most common topic of advice and discussion was the best strategy to get SSDI. The newcomers to the meetings were both married, unmarried, currrently working, unemployed, former highly successful, of routine backgrounds, recently diagnosed, and long time sufferers.

    The advice most often given them was go to a particular lawyer, and expect to get rejected at least twice, sometimes three times. Then you would have a good chance. They would celebrate after getting it, and it was great cause for relief.

    I wish I weren't speaking the truth, but as the next President and congress come into session, SSDI is really going to be on the chopping block. I think alot of deserving PWCs are going to find themselves in panic mode. They wil be living with family or possibly living in a van down by the river. And the rate of increase in patients, I believe, is going up. Probably for the same reasons other rheumatoid illnesses are increasing, such as MS, lupus, diabetes 1, etc.

    I have ranted in probably overly strong terms about the effectiveness of Klonopin for treating the symptoms of ME/CFS in most people. When a PWC shows up at a doctor's office and is paternalistically told he can't have any narcotics or opiates, the doctor should really understand what might be at stake.

    That patient is dangling over a bottomless pit. In coming years there may be NO SSDI to fall back on. This country is in debt between 16 and 50 trillion, depending on the analysis. Instead of moralizing, or cowering because of rare bad reactions, the CFS doctor community really should be looking or ways to keep that patient at least partly active and employed. Uncle Sam may not be there the way he has been in the past. Use of controversial (to say the least) drugs like Klonopin, other benzos, opiates and maybe even medical marijuana, to keep people off the government dole should be considered in coming years.

  • Cort July 11, 2012, 9:39 pm
    CJB

    That's been my experience as well — not being personally harrassed, because I don't post on those threads to avoid it. There are a few members who have had bad experiences with Klonopin, who are loud and vocal and assume everyone will react as they did. They shout down anyone who has benefitted. I was shocked to hear Cort say that he thought the negative aspects of the drug were underrepresented on the forum.

    I think you missed what I said. ..I did not say the negative aspects of Klonopin were under-represented on the Forum – I'm sure they are very well represented on the Forum. I said the most-visited pages that show up in search engines such as the page on Phoenix Rising (I provided the link) and the Cheney article found elsewhere o did not provide both sides of the picture…..

  • Cort July 11, 2012, 9:41 pm
    MishMash

    hi Cort,
    I think you should consider doing a mini-feature about the future of social security disabililty insurance. I've heard a lot of very dire talk in the news about cutting the rapid rate of increase in awarding SSDI to disabled people. I think it urgently relates to the topic of this post.

    More than 15 years ago, when I used to go to the CFS support group meetings, the most common topic of advice and discussion was the best strategy to get SSDI. The newcomers to the meetings were both married, unmarried, currrently working, unemployed, former highly successful, of routine backgrounds, recently diagnosed, and long time sufferers.

    The advice most often given them was go to a particular lawyer, and expect to get rejected at least twice, sometimes three times. Then you would have a good chance. They would celebrate after getting it, and it was great cause for relief.

    I wish I weren't speaking the truth, but as the next President and congress come into session, SSDI is really going to be on the chopping block. I think alot of deserving PWCs are going to find themselves in panic mode. They wil be living with family or possibly living in a van down by the river. And the rate of increase in patients, I believe, is going up. Probably for the same reasons other rheumatoid illnesses are increasing, such as MS, lupus, diabetes 1, etc.

    I have ranted in probably overly strong terms about the effectiveness of Klonopin for treating the symptoms of ME/CFS in most people. When a PWC shows up at a doctor's office and is paternalistically told he can't have any narcotics or opiates, the doctor should really understand what might be at stake.

    That patient is dangling over a bottomless pit. In coming years there may be NO SSDI to fall back on. This country is in debt between 16 and 50 trillion, depending on the analysis. Instead of moralizing, or cowering because of rare bad reactions, the CFS doctor community really should be looking or ways to keep that patient at least partly active and employed. Uncle Sam may not be there the way he has been in the past. Use of controversial (to say the least) drugs like Klonopin, other benzos, opiates and maybe even medical marijuana, to keep people off the government dole should be considered in coming years.

    Maybe we can work on that together…I would need some help with that.

  • Ocean July 12, 2012, 7:56 am
    K2 for Hope

    Thanks to all who have contributed their stories, good or bad, on the use of benzo's and issues on withdrawals for ME/CFS patients.
    Also, thanks for the How-to's, if someone were to want to detox from benzo's for whatever reason.

    I agree. I really don't get how someone sharing their reality/their experience is a bad thing. I don't believe in the silencing of people because it supposedly will make such a such treatment or such and such drug look bad. People are sharing what happened to them. Others can choose to take from that what they wish and do with the info as they wish or not. People can use their own minds to decide if others' experiences apply to them or not.

    Neilk, I'm glad to hear you are off the Klonopin. I remember when you were posting a bit about it and the troubles you were having. Very good news to hear this resolution.

  • grosolo December 13, 2012, 2:24 am
    MishMash

    Any physician who says he/she can successfully treat ME/CFS with "low dose naltrexone", supplements, yoga, etc, is either fool or a liar. Sorry to be so harsh, but this is the line you get after paying for Dr. Klimas's rather large, cash-only fee. Kudos to her for her incredible lab skills; but I don't see anything extraordinary in diagnostics going on there. I don't know how much Lapp charges, but from what I understand he hasn't healed anybody of their ME/CFS either. Maybe I'm wrong. If either doctor is against the use of benzodiazopines, then pray tell, give us an alternate drug that really works. There aren't many alternatives.

    Yes, the ant-anxiety drugs and the opiates were not designed for "long term use." But then again our bodies and our minds weren't designed to tolerate long-term ME/CFS symptology, right? The recent suicide of one of our better-known patient-readers might illustrate my point. So pick your poison. And by the way, I know plenty of people of who have gone psychotic on Lyrica, neurontin, and other anti-seizures, anti-psychotic medications. These are the "safe" ones, I presume. I'm sure Lapp would give you all that crap in bucketloads. Want to talk about needing a trip to the funny farm? Read some of these case histories.

    If you say anti-depressants help you, I can tell you that GlaxoSmithKline just got a $4 billion fine for, among many things, overstating the positive effects of the Paxil and Wellbutrin, as well as *understating* the noxious side effects of these drugs. So, again, where are all the safe, effective drugs for ME/CFS (since we now exclude klonopin)?

    I'm sorry about your experience with Klonopin, but I think you are very much the exception when it comes to benzodiazopines. I have been taking one form or the other of these drugs for seven years. I know that if I were ever forced to come off these drugs I would necessarily have to *taper off* and not quit cold turkey. That's just common sense. By publicizing your experiences in this way I think you just muddy the waters for the rest of us patients who are trying to get ordinary doctors to take us seriously.

    The bottom line for me is: If you truly believe ME/CFS is a chronic organic condition, and not some kind of depressive or imaginary state, then you (or your physician) would have to admit that real pallatives drugs are in order. And if you accept that it is a condition with *no known treatments* at this time, then only currently available pain-killer or sleep-inducing are in order to allow acceptable quality of life. Ms. Nielk is just one person who had a bad experience.

    here here.

  • Johannes Starke June 11, 2014, 12:59 am

    Thank you for this fantastic blog. I couldn't have wished for more when I was googling about possible side effects of Klonopin in ME/CFS. Thank you, Cort, for the balanced view of the drug and including input from my favorite ME/CFS doctors.

  • K- KID February 13, 2015, 9:56 pm

    I know this an old thread but is there still a topic going on recently on BENZO withdrawls? Thanks !

  • Braz December 18, 2015, 4:07 pm
    CJB

    There are so few drugs/therapies I've tried that have helped and Klonopin helped a LOT. Obviously, after reading this thread, I'm tapering off. And I wonder how many forum members/readers were scared into stopping cold turkey which sounds like it can be truly dangerous.

    Benzos have been around a long time and we know a lot about them. My doctor has trialed me on many of the SSRIs and newer classes of drugs that are supposed to help with sleep, pain, etc. They are horrible for me. No benefits and dreadful side effects.

    It's really painful to see this article and Gabby's story giving more doctors an excuse just to not prescribe drugs that are working for some of us. I read a story about one patient here who takes morphine. If I had a prescription for morphine, I'm sure I wouldn't need benzos. But I have yet to find a doctor who will prescribe any pain meds for ME/CFS, let alone morphine. If I was getting relief from ANYWHERE else, I wouldn't be taking benzos.

    Here's how it goes. Over=exertion = bad sleep = pain = more bad sleep = pain + depression = more bad sleep.

    Klonopin breaks the cycle. It relaxes my muscles enough so that they don't feel like they're trying to pull themselves off the bone. The way Klonopin makes me feel, it's not hard to believe there is some protective action during the really severe times.

    I will be interested to hear how the survey results turn out. And shame on any doctors who use one person's response as a blanket excuse not to prescribe this drug.

    jmells, it's not hostility, it's fear. Having found something that works, I'm afraid articles like this will cause doctors to be advised not to prescribe it because of one person's rather dramatic story of a health crisis that included Klonopin.

    I like that equation. Even though I have never been diagnosed with CFS/ME, I can relate.
    However, my cause in that cycle is the Klonopin/clonazepam ! And the general bad state I´m in makes discontinuing the drug much harder, if not impossible ! But at this point, the drug has become toxic.

    My personal view is that people should be allowed to take the drug. But it´s really an epilepsy drug, even though it is used off label and for other indications in some countries.
    That drug is much more potent than most people are aware of, there is a lot that is not known about what it actually does. I consider this drug one of the most dangerous drugs that exist.
    Unfortunately, most people are not informed of the potential risks. Of course, only a small minority has to deal with the worst of the worst.

  • seth December 30, 2015, 7:46 pm

    Don't know if anyone is still monitoring or responding to this old thread. I happen to chance upon Gabby's story today at the end of 2015, when looking for Klonopin for CFS pros/cons on Google.

    The thing that stands out to me about her story is that, after her 8 year Klonopin buildup and hellish coming-off, she claims that she is no longer bed-bound or in constant pain, and feels better with a new chance on life. And yet she was bed-bound and experiencing terrible symptoms BEFORE she started the Klonopin; indeed that's why it was originally prescribed. But if she could experience feeling much better and un-bed-bound without Klonopin, how come she didn't do that before starting? In other words, with the Klonopin gone, what's making her so much more symptom-free now, and whatever that "remedy" is, was it available before she started the Klonopin?
    And although Klonopin can make some people feel hellish in withdrawal & after-effect, but they were feeling absolutely hellish before they started taking it and nothing else but Klonopin worked, why do so many report about the hell Klonopin puts them through when removed, as if they forgot that their pre-Klonopin hell was also total hell?

  • Braz December 31, 2015, 2:01 pm

    For many people their pre-Klonopin time was not hell at all. It can be a gruesome drug to get off.

    As for Gabby, I can't speak for her.

  • pepous September 6, 2016, 5:20 am

    Hello,

    Would like to ask you about what is recommended maximal usage of clonopin lets say per month?

    I use it only in times of stress. I try to use it not very much lets say once a month but i am considering increasing the dose. Becouse sometimes stress take me into cycle of not sleeping – wired and tired fatigue and it take many days to recover.

    So how often it is possible to take it at max? Once or twice per week one time dose not exceeding lets say 0,75 mg is tolerable?

    And of course when no stress event occur to not take anything of course

    What do you think?

  • Sushi September 6, 2016, 5:25 am
    pepous

    So how often it is possible to take it at max? Once or twice per week one time dose not exceeding lets say 0,75 mg is tolerable?

    This would vary a great deal from person to person. It is likely that genetics plays a part here. Some take low doses of klonopin every day without seeming to have a problem. Others get into trouble with regular dosing. If you start needing a larger dose, that is usually a sign of becoming tolerant.

  • pepous September 6, 2016, 6:45 am
    Sushi

    This would vary a great deal from person to person. It is likely that genetics plays a part here. Some take low doses of klonopin every day without seeming to have a problem. Others get into trouble with regular dosing. If you start needing a larger dose, that is usually a sign of becoming tolerant.

    Thank you. I will need to go to vacation on at least one month where i dont need to take anything.

    Have a nice day