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

Hello all,
This seemed to be a good place to mention that anyone having reactions to prescription medications - be it a reaction to a medication while you are taking them or also after you stop taking them ( "discontinuation symptoms"), it should be reported to the FDA at

http://www.fda.gov/drugs/guidancecomplianceregulatoryinformation/surveillance/adversedrugeffects/default.htm

Your health provider should do this, but they often neglect to do it, besides it is a good idea for the consumer to write up their own symptoms. There are adverse drug events that don't show up during clinical trials because of their short duration, or for whatever reason do not make it into the reporting system at time of drug approval, and so the FDA is made aware only through the Adverse Event Reporting System.

In the case of Gabby and "John", the addictive properties were well known, but in many cases unknown side effect come to light after clinical trials and drug approval.

Best wishes to Gabby and "John".

MishMash I think your experience just indicates what the doctor commentators said...which is that these drugs work differently in different people. I'm well prepared to accept that they work very well in some and even probably many people - Dr. Cheney and Dr. Bell appear to have used them quite successfully.

What we were missing on the web, though, was some idea of their possible negative effects...and giving some patients the knowledge of what to look for when their experience with them might turn bad....I think it was Dr. Lapp who noted that when tolerance occurs- when you have to up the dose to get the same effect - that's a warning sign. If you start having more symptoms - that's a warning sign. It's these things that make Gabby's post so valuable...It'll be interesting to see how the survey turns out.

"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."

No this is no good either. There is no good evidence to support palliative therapy. No evidence that it improves function over the lifetime of the disease. We know palliative therapy is useful in terminal illnesses- not clear if narcotics and benzos really can help over time in an illness like ME/CFS where patients survive 25 years before death.

There are a very few treatments that have been shown in some studies to improve the entire cluster of CFS symptoms, and klonopin is not one of them. Neither is low dose naltrexone or the methylation protocol. They are Ampligen, Valcyte, Rituxan. That's it. Three drugs after 30 years of diligent struggle. These drugs are available to very few patients, unfortunately. Only a few hundred in the world. Not fair but it's true.

Don't trust anything not supported by at least one double-blind study! You get what you pay for.
As for Nielk's reaction to klonopin, a lot of research has been done on tolerance and addiction and it is really a genetic thing- the same genes that make 20% of the population at high risk for alcoholism can also cause a different reaction to benzodiazepines. For many people klonopin is benign, and tolerance is incomplete. For people with the "wrong" gene, it can be a terrible experience as their brains adapt and "need" more and more to feel normal. Not her fault. And it doesn't mean she doesn't really have CFS

I dont think nielk comes across as anti benzo's but lets us know that these meds are not for her. The way i understand it was that even at a high dose klono wasnt helping anymore so it was time to stop this med which was a struggle to say the least for her. I think her example can help others to understand benzo tolerence and to not keep increasing doses when the meds stops working etc

Im abit lost on the rant about certain docs not being able to cure cfs, if that was the case i dont think this forum would exist. I dont think nielk was saying benzo's were the cause of her cfs but tolereance to these meds was making her symptoms worse and coming off them has helped her to a certain degree, i didnt take it that this has cured her??

I also understand that benzo's are also helpful to many people with cfs as im one of them. I think what we might need to do is start a thread on how to use sleep/benzo meds properly for chronic conditions, how to avoid tolerence and addiction and how to help people come off these meds if they are causing issues, also explain how they affect everyone differently.

I was abit taken back by some peoples comments referring to benzo's and drug addicts etc like we are criminals or crack heads etc. the majority of people here use these meds for medical reasons, not to get high and many people find they help improve their function. We all know these meds are only suppose to be for short term use but currently there are know authorized treatments for cfs and chronic insomnia, so we are left with whats available. I dont think we want to be relliant on meds for sleep, its more a neccessity for many of us as it helps us try and fit into a normal world etc and for me they have helped me to be able to keep working and supporting my family financially. If i didint have to fit into a normal world and could sleep/rest when i needed to etc etc then i probably wouldnt be relying on sleep meds as much.

cheers!!!

yes.. many of us which have taken Klonopin for the ME/CFS stuff and did find it great, only needed to take quarter to a half a pill of the lowest possible dose and dont seem to get tollerance from that. This isnt the normal dosage rates of this drug at all which many of us take for ME/CFS.

I personally think Gabby's doctor was hugely at fault for her extremely bad experience due to raising the dose when she became tollerant (it really seems stupid to do that as after all the person would likely to become just tolerant to it again). Maybe too she started off taking a much larger doses rate then other ME/CFS specialists have their patients on.

I dont think Gabby's situation is the general kind of experience most who take it for ME/CFS for the "central sensitivity" have (due to the amount etc she was put on and how her doctor was prescribing it). We usually take it in less amounts then being used for other illnesses. Gabbies doctor too prescribed it for sleep... many ME/CFS doctors who prescribe it, dont prescribe it for sleep but rather other ME/CFS stuff (the doctor who prescribed it for me wasnt prescribing it for sleep and didnt expect it to be helping that).

Thou Wikipedia does say that.. that may not even be relevant to those who arent not even taking standard doses of the drug.

Id hate to see those who are needing to take this drug, in fear of it due to studies in which the extremely low doses of it which most of us who take it take werent studied.

Like ANY DRUG.. it can be dangerous in the hands of doctors who arent really doing the right things with it in a ME/CFS patient.

Ive been maybe permanently damaged by a drug commonly prescribed in ME/CFS but not this one... (I see a bowel specialist on Monday due to Amitriplyine side affects from just taking a few weeks in a sleep trial. Thou Im now off of it for months now, its left me now having to use enemas as bowel no longer functions itself). As in the common case, a doctor is at fault for the damage done to me now (it shouldnt have been prescribed due to other ME/CFS comorbids i have of IBS constipation as Amitriplyine slows peristalisis, it seems logical that the doctor should of checked into things like that as it should of been obvious that it would of made me far worst).

Dont blame the drugs.. blame the doctors unwisely prescribing them. Doctors trying to treat ME/CFS symptoms eg insomina with drugs that dont usually treat the issue in ME/cfs, doctors heedlessly paying no attention to their dangers so uncautiously prescribing, doctors having no good awareness how certain drugs are usually used in ME/CFS or being unaware of when they shouldnt be prescribed.

If it seemed liked I was "ranting" about doctors, it's because for ME/CFS they are mostly worthless. They suck. Their only useful purpose is to prescribe palliative meds. There are no effective treatments. None. Not rituximab, not anti-retrovirals, not Ampligen. As somebody eloquently said above "we wouldn't be on this site if there was a cure." Yes!

If you are paying four figure sums to see a "ME/CFS specialist" and being told to take supplements and do meditation then you are being ripped off. It's snake oil. The doctors who do have the guts to prescribe sleep meds, benzos, and whatever is needed, then kudos to them. They don't suck. Thanks Cort for allowing me to vent.

Mishmash, i partially agree with you in that most docs only have pallative treatments for us and that the guru's are way over priced, but i do believe that some treatments do improve a persons function outside of just relieving symptoms. Antivirals, ampligen, ritux etc have partially 'cured' some and fully 'cured' others but i think it comes down to being able to fit the right patient to the right treatment and this does come down to the experience of the doctor and to the testing available, which is limited. I also think its wrong for some doctors to charge large sums of money from people who are the least likely to be able to afford it.

I do think there is a definate shortage of doctors who just treat with pallative treatments and i think this is the responsibility of the governments to train docs up to treat like this. I think this shortage of doctors is why many pay large amounts of money to dr's for treatments as they are desperate for help and cant find it readily as they should. It shows how much we value ours lives but compared to other illnesses its not fare that many have to pay so much for help compared to other illnesses. And like u mentioned, good on the docs for trying to help. We have to be careful not to scare docs off from trying to help. I dont think any doc means to be harmful but i think bad things happen out of carelessness but also bad things are going to happen no matter what, its a risk we have to take but we need to try and reduce the risk. I feel sorry for Nielk and i really think her docs should have picked up on her problems much earlier which i think could have reduced her problems from benzo's alot. Its a hard lesson to learn but what we have learnt is that we just cant trust our docs 100% as know doc can monitor us all the time and keep up with our progression, especially with cfs/me we have to become our own doctors with the help from traditional doctors to guide us in our decisions about meds, testing etc etc.

take care everyone,
cheers!!!

Thanks for doing that. I had 3 other benzos on top of the Klonopin I could of reviewed Temazapam, Valium/Diazepam and Xanax.

Interestingly Temazapam is the only one I tend to get tollerance issues with. Ive twice got tollerance with that thou I was only taking it 3 times a week (it only takes a few weeks for me to get a tollerance to it, so had to take more of it but can just stop it without any bad effects thou I now have to take max dose my CFS specialist will allow IF I take it.

For anyone wondering what my CFS specialist prescribes.. his max dose is 15mg of the Temazapam. Ive had two different CFS specialist approve it in very cautious useage ways. Initially took for only 5 days to try to bring sleep cycle forward and from there.. only take twice spaced out over week.. (three times if very desperate with sleep and nothing else is working at all thou that is discouraged..due to the tollerances too, I wont take it three times per week)

If you have a specialist not being cautious with benzos.. best to probably find yourself another specialist.

I havent taken the Temazapam now for at least 6 weeks without any effects from stopping it.

I wonder if it is solely to do with the dose differences why I dont developed tollerances when I take Klonopin (thou very low dose) but run into issues quickly when Im taking Temazapam (even thou I started that off at less a pill which worked for me at first).

I also build up tollerances very quickly (like in weeks) to anti histamine sleep aids (twice developing tollerance to that).

"They suck. Their only useful purpose is to prescribe palliative meds. There are no effective treatments. None. Not rituximab, not anti-retrovirals, not Ampligen."

I'm not sure if you are speaking from personal experience or just trolling now. Have you taken these drugs? Now, it's not beyond a shadow of a doubt but there is scientific evidence in the form of randomized controlled trials showing that a few drugs do improve the CFS symptom complex over the long term. I took Ampligen for a year and had neurocognitive and exercise testing done before and after. For me, I experienced improved performance IQ, attention span, working memory, and VO2 max on exercise stress testing.

It was not "a cure" because it did not make all symptoms completely and permanently go away. Hence, yes, I am still on this forum. However, most chronic diseases are never cured.

Also, ME/CFS specialists can serve important functions besides providing treatments. For example, many patients are wrongfully denied disability payments because there is a "lack of evidence" they are really sick. Someone like Klimas may not be able to cure her patients most of the time but she can do tests that most doctors don't know how to do that will convince a court or insurance company that you really aren't faking it.

Water titration works. I've gotten down from temazepam 30 mg (the high dose) some years ago to about 7.5 mg. I only titrate when I'm not under extreme stress. I titrate by about 1/3 mg at most. The problem with a sudden detox, which seems necessary in this case, is that withdrawal symptoms may persist for much longer, than a very slow one. In a slow one, your brain will hit plateaus where it has some trouble adjusting, and you will stay at your dose until the symtpoms subside (could be insomnia, early wakening, more anxiety or depression). In a few weeks you can begin the steady downward pace again. Though this can take years if you are extremely sensitive, it avoids the danger of a protracted withdrawal syndrome that can perpetuate itself. Also, these drugs can be useful and not everybody is sensitive to them in this way. I've had friends who could go off klonipin almost overnight with no symptoms. Myself, I am sensitive.

Klonopin/clonazepam for many is the only long-term palliative treatment until such time as disease treatments are available. Gabby’s unrealistic expectations of the drug were partly the fault of the doctor but also Gabby for not being responsible and researching this herself.

Klonopin is not a specific treatment for insomnia and neither Dr Cheney or Dr Bell prescribe it as such, so the elevation of the dose was one issue, but that’s not all. Gabby then made the problem worse by taking an ill-advised SSRI and getting suicidally depressed - a known side effect of SSRI’s. If Gabby had done any research she would have also found Dr Cheney’s article explaining the dangers of taking SSRI’s and stimulants in ME/CFS.

It turns out that the real issue was 6 years of Ambien!, a seriously dangerous drug which can cause severe reactions, induce suicidal ideation and high blood pressure, and which should never ever be mixed with such a high dose of Klonopin! If anyone took that much they would end up bedridden too. The CFS doctors consulted at the beginning of the article stated that her negative reaction was not a typical reaction to Klonopin. There’s a lot not adding up here. It was more like a typical reaction to some very serious Ambien side effects compounded by too much Klonopin. Why didn’t the CFS doctors commenting on the story figure that out?

It also turns out that Gabby has not actually been diagnosed with ME/CFS, she relied on a sleep specialist saying her sleep study results were consistent with CFS but she did not mention whether she actually met the 2003 Canadian criteria, or just the CDC definition, before taking that dangerous drug combination for too many years. It’s a reasonable question to ask when she appears to have done no research on the disease in 10 years.

Gabby then survived being put through the severe stress of sudden withdrawal from two drugs, for the prize of symptoms that are indistinguishable from moderate/severe ME/CFS. I’m questioning how does a patient with such severe ME/CFS survive the physical stress of abrupt withdrawal without suffering a serious relapse? Why is no-one questioning Trileptal, a dangerous drug with serious side effects that is not recommended for ME/CFS patients?

Klonopin is a very safe long term palliative treatment for ME/CFS patients who need it but this is actually a story about the dangers of Ambien mixed with other medications! The title of this story is false, its AMBIEN, and the additional comments on the story by the three CFS doctors are unusually alarmist and worrying for anyone who relies on Klonopin to survive this DD. Do Klimas, Bateman, or Lapp actually use the Canadian criteria or do they just conform to the CDC definition?

Klonopin is recommended in the Canadian consensus criteria and has been safely used by many patients for over 10 years to alleviate muscle pain, sensory overload, anxiety, “aid” sleep or improve the rest you get when you can’t sleep, and a little extra to reduce the impact of post-exertional relapse. I have experienced that relief on 2mg a night for 8 years, and I'm alert enough to see that this story you have set up is deliberately misleading.

I can't believe this "scare story" because of the fallacious reasoning - the classic misdirection, appeal to authority, and the emotional manipulation. Its fearmongering and its dishonest. The question Cort is why are you doing this? And for who?

Satoshikasumi,
I humbly concede your point: some of our docs do assist in our getting social security disability insurance. And that is a huge deal. No question. But over the decades I've met more than a few patients who are still "pre-collapse" and are trying to maintain some semblance of life. Not totally disabled (yet) with ME/CFS, and still trying to hold on to the job, the family, not having to collapse into some tenement apartment living like a potted plant. If the docs don't understand you are walking on a precipice at that moment, and are more concerned about your possible "addiction" than likely collapsing into disability, then that's when I cry foul. They are either foolish or callous. They don't really believe your illness or they don't care.

An interesting point! I didn't realize this - I think it was in the Wikipedia (benzodiazepine withdrawal syndrome) that they remarked how closely the benzo withdrawal symptoms were to alcohol detox..

Good points....Just checking the survey briefly; of about 55 people who have taken I think 5 or 6 took doses higher than 2 mgs...of those most are on 3 and one was on 4......

I agree the Wikipedia reference probably does not reflect low dose Klonopin use...and her doctor made a big mistake when he upped Gabby's dose (and then suggested she up it again - which she refused).

I think blaming a patient for following a doctors advice is a bit much! Most people do that unquestionably. I know that Gabby's seen at least one well known ME/CFS physician - I hope she doesn't mind my saying that - so you can throw the misdiagnosis idea out.

Gabby's problems did not begin with withdrawal at all; if you look at her post again you can see that she began experiencing new symptoms (high blood pressure) and her own symptoms got worse while on the medication; in fact it was these new symptoms and increased old symptoms which prompted her to try and get off the drug which she tried to do several times.

Klonopin may very well be a safe and palliative medication for many people with chronic fatigue syndrome - as I pointed out in the introduction, the problem is that some people don't do well on it either because they just don't well on it or they have become tolerant to it and there's nothing about that side of Klonopin on the web. Pointing out the potential dangers of long term high dose Klonopin use is not fearmongering - its being appropriately cautious. This is a complex subject - there are no simple answers...

The doctors were brought in so that they could provide an objective viewpoint and so that Gabby's story wouldn't appear alarmist, actually. I told them I realized that Klonopin is a valuable drug and that I'd want to throw the baby out with the bathwater, so to speak, asked for their opinions.....

In order to get as good a take on the effects of Klonopin we also did added a survey....I'm not sure how much more objectivity we can impart to this process.

Cort, I do think your contention that the internet only has positive things to say about klonopin is gravely mistaken. It is true that it has been portrayed positively in the ME/CFS community specifically, but not in medicine generally.

Starting in the early 1990s, it became fashionable to demonize all benzodiazepines as the latest horror story of drug addiction. Guidelines urging primary care doctors to never prescribe benzos for longer than four weeks became commonplace in many countries. Coincidentally, this was the same time that Prozac was invented and promoted as the long-term cure for almost every mental malady, from depression and anxiety to overeating and shyness. And of course, Prozac was once alleged to be the cure for ME/CFS.

At this time, SSRIs were new discoveries and very expensive, and benzodiazepines were going off patent and cheap. The fact is, true addiction to benzos (drug abuse for a high, escalating doses) is quite rare, though dependency is common and the withdrawal process can take a lot longer than with most drugs.

See this article in the Psychiatric Times "The religion of benzodiazepines" http://www.psychiatrictimes.com/print/article/10168/54151

"Despite a sharp decline in the prescription of benzodiazepines during the past decade, reservations about their use have continued to escalate. . . . Data from . . . diverse sources . . . suggest that (1) the risks of overuse, dependence, and addiction with benzodiazepines are low in relation to the massive exposure in our society; (2) benzodiazepine addiction can occur when doses within the clinical range are taken regularly over about 6 months; (3) many patients continue to derive benefit from long-term treatment with benzodiazepines; and (4) attitudes strongly against the use of these drugs may be depriving many anxious patients of appropriate treatment."4

Gabby, I am glad you are on the road to feeling better. Please keep us/me posted on your continual improvement. J

Thanks J. and all others who wish me well.

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.