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

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jul 5, 2012.

  1. taniaaust1

    taniaaust1 Senior Member

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    That's a bit overly harsh on Gabby. It is doctors and not us who are "supposed" to be the drug experts. Many would think the opposite and think it wasnt being responsible if one was going against doctors advice and questioning it.

    Unfortunately the situation is that it is the case, that we do need to be researching drugs before we start taking them as most doctors dont know what is best for complicated patients such as ourselves. A doctor who really wants to help us, may also end up trying things on us which wouldnt be usually done.

    I'd query the Ambien too. Ive heard some horrific Ambien cases and know of someone who almost died due to how that drug affected their brain.

    You've read much into her post that others including myself didnt see. Just cause she had sleep study results consistant to ME/CFS, it dont mean she wasnt diagnosed. So that is jumping to a huge conclusion to say that she only probably has the CDC definition of CFS from that.


    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.
    Silver7, CJB and Nielk like this.
  2. Hip

    Hip Senior Member

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    By co-incidence, I just posted a new thread on alternative anti-anxiety supplements that I have tested and found work. See here:

    http://forums.phoenixrising.me/index.php?threads/completely-eliminated-my-severe-anxiety-symptoms-with-three-supplements.18369/

    Perhaps these supplements will be useful for others here. They have no risk of withdrawal symptoms or dependence.
    warriorseekspeace likes this.
  3. Cort

    Cort Phoenix Rising Founder

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    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.
    taniaaust1 likes this.
  4. Calathea

    Calathea Darkness therapy

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    There are several good forums out there which are specifically for people withdrawing from benzodiazepines, such as BenzoBuddies. It doesn't let you run a search if you're not a member, but it's easy to run a search by putting "klonopin site:benzobuddies.org" into Google (without the quotation marks). I'm having a quick look, and it appears that there are people who have developed problems even if they were on a low dose. There are other similar websites out there.

    There are definitely a huge number of people who find out the hard way how addictive benzodiazepines can be, and who also find that they get very poor or no support from their doctors. It's definitely not scaremongering, Nielk is far from being a one-off, and I fully approve of discussing the risks openly. It's also sensible to discuss the risks from similar drugs, such as other sleep meds (Ambien is a lot more dangerous than is generally known, for instance), opioids and anti-epileptics.

    I have always kept benzodiazepines for occasional use only, although I did once take temazepam for a week, and discovered that this is too long for me, it sets off rebound insomnia afterwards - I now use it for a maximum of three days in a row. But I had a horrendous time of it coming off gabapentin, both during the taper and for several months afterwards, where again it turns out that it's known that it's addictive, but doctors don't like to acknowledge it (and certainly never warned me). I also had a week of withdrawal one time after being on co-codamol for a month, although it hadn't happened the previous time I was on co-codamol and tramadol for a month (in both cases, the pain was severe enough that I had no choice), and again found that the doctors were hopeless, assuring me vaguely that co-codamol wasn't addictive. I would never dream of taking something known to be as addictive as benzodiazepines long-term.
    warriorseekspeace and Nielk like this.
  5. satoshikasumi

    satoshikasumi Senior Member

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    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.
    Nielk likes this.
  6. Calathea

    Calathea Darkness therapy

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    Neurontin (gabapentin) protects the brain from the excitotoxic damage caused by ME, does it? I pretty much wrecked a year of my life due to that stuff, and let me tell you, my brain does not feel protected. More like seriously damaged, and I hope it won't be permanent. I had damned good sleep (well, by ME standards) before I took that wretched stuff, and six months after coming off it entirely, my sleep is still not back to how it was before. I'm not familiar with Cheney, I've just seen him mentioned a lot around here, but if he's said that, I'm going to treat him with immense caution. And a failure to warn all patients about the well-documented problems with benzodiazepines, Z-drugs, opioids or anti-epileptics is absolutely shameful.
  7. Cort

    Cort Phoenix Rising Founder

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    This is from Nancy Henson - a satisfied Klonopin (and Ambien) user who turned things around with Dr. Lapp

    I think its very important to STRESS that taking excessive amounts of klonopin is extremely rare. I've had CFS for nearly 30 years and being active in support groups I've know 100s of CFS patients personally. I don't recall anyone taking 3mg of klonopin at bedtime.

    What I have heard far too many times was how an ill informed doctor would demand that his CFS patient go off klonopin immediately without tapering off. Can you imagine the agony of going thru that??? That is pure ignorance - and torture for the patient - but it happens very often I'm sorry to say.

    So you can't blame the drug - but you can blame the doctors who are not educated about the medication.

    This is another piece of evidence of how the bumbling of the CDC has hurt us by not getting doctors educated about the neurological aspects of this disease and the medications that DO help.

    My Dr. Lapp was of tremendous help to me. I just wish I'd had known about him from the beginning. I was 15 years into my illness before I was treated by him in 2000. But I did have another good doctor when I first moved to Charlotte in 1997 (I became ill in '84) - Dr. lloyd Bridges - he is so very knowledgeble but was not aware of klonopin's benefits. I've tried to get Dr. Bridges on Co-Cure's Good Dr List, but the last time I checked, he still wasn't on it. Charlotte is a large city and there are so few doctors who know anything about how to treat the symptoms of the disease.

    Thanks for all this important information.
    taniaaust1 likes this.
  8. Cort

    Cort Phoenix Rising Founder

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    And more from Nancy

    Yes, I would imagine that of the sicker patients - like those that Cheney treats - may need higher doses but the average seem to be on the same as my dosage of 2 mg per day. I divide mine up across the day. 1/2 twice a day with 1mg at bedtime or 1/2 4x/day with the last at bedtime. I also take ambien. And there's another example. Some claim that ambien is not good because you need more and more and more. I've been on that for about 15 years and I've actually reduced from 10mg to 5mg at bedtime. But that's because some of the meds I take now that I wasn't on 15 years ago, also make me sleepy and help me stay asleep so I no longer need the larger dose... with the primary one being neuropathy (idiopathic as I do not have diabetes).

    I think this is another example of how important it is for the treating doctor to understand this disease and the meds we take
    catly likes this.
  9. Nielk

    Nielk

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    One key point that I think we need reminding of is that both Klonopin and Ambien are in no way a CURE for Chronic Fatigue Syndrome or for that matter for anything else. What they basically do is "mask" the problems. When they work, there is definitely a great benefit to the quality of life of ye patient. Certainly a patient who has insomnia and takes these medications for a good sleep, they will feel much better but it's just a band-aide. I don't believe that any doctor contends that by taking these medications, one is "curing" ME/CFS.

    I am not sure why one would think that taking 2mg of Klonopin a day with the addition of Ambien is average and fine whereas 3mg a day is a "very large dose".

    If one reads Dr. Cheney's interview about the "Klonopin Myths", he advises that CFS patients should start by taking .5mg in the morning and 3 to 4 times that amount in the evening. Moreover, he stresses that when one is in a crash, they should easily double that dosage. That would amount to 5mg a day.

    "Nancy" is very fortunate that this dose is working well for her and I'm sure there are many patients out there who see the same benefit. I was that patient a few years ago.

    The problem begins for some of us when this drug starts "turning on you" and this happens to many out there.

    I personally have seen this and heard of many cases where this has happened.

    There is no way that I know of to predict when and to whom this is going to happen to. I never thought that this will happen to me. For a while, it worked great for me. I had no previous problem with becoming so tolerant to a medication that I could not comfortably taper off of it and I had been on many medications before.

    If Nancy and others like her will just keep this in mind so that if God forbid they start showing signs of dependence, they will take heed and seek out help to taper off of it, then I would have done what I accomplished to do by publicizing my story.
    Silver7 and Bunchy like this.
  10. MishMash

    MishMash *****

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    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.
  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    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.
  12. MishMash

    MishMash *****

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    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.
  13. MishMash

    MishMash *****

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    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.
    CJB likes this.
  14. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    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.
  15. Cort

    Cort Phoenix Rising Founder

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    '
    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...
  16. Cort

    Cort Phoenix Rising Founder

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    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.
  17. Cort

    Cort Phoenix Rising Founder

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    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..
  18. jimells

    jimells Senior Member

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    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.
  19. Cort

    Cort Phoenix Rising Founder

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    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....

  20. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    MishMash,

    You say:

    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

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