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

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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Comments

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".
 
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 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.
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.
 
Hey MishMash,

Not sure just who you are ranting at as you cast a very wide net...but I guess you have read the rules here and know that it is not OK to question a member's "real" diagnosis, or suggest that someone (whose history we have followed with a lot of concern) is
publicizing your experiences in such exaggerated terms
Sushi
 
"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!!!
 
I caught a thread on the Forums where patients were taking a half or a quarter of the lowest dose possible of Klonopin :)...Dr. Bateman also referred to the 'central sensitivity' present in this disorder. I think this is a key element and I wish somebody could figure it out. I also wonder if its present in other disorders (?).
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).

Cort said:
Wikipedia reports that something called 'benzodiazepine withdrawl syndrome' occured in a third of people treated with Klonopin (clonazepam) for longer than four weeks.
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!!!
 
I added another section - you can now review Klonopin plus two more benzodiazepines.
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).
 
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.
"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?
 
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.
"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.
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.
 
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
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..
 
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.
.
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).
 
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 then 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. 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? A little fearmongering perhaps?

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 those 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 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. That survey fits in nicely with the fearmongering drummed up by this misleading story.

Klonopin is recommended in the Canadian consensus criteria and has been safely used by many patients for over 10 years. Do Klimas, Bateman, or Lapp actually use the Canadian criteria or do they just conform to the CDC definition?

I don’t trust this article because of its obvious use of fallacious reasoning: classic misdirection, and appeal to authority. The real question Cort is why are you doing this?

“Clonazepam is perhaps the most useful medication in chronic fatigue syndrome” according to the experts.
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.
 
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 then 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. 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? A little fearmongering perhaps?

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 those 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 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. That survey fits in nicely with the fearmongering drummed up by this misleading story.

Klonopin is recommended in the Canadian consensus criteria and has been safely used by many patients for over 10 years. Do Klimas, Bateman, or Lapp actually use the Canadian criteria or do they just conform to the CDC definition?

I don’t trust this article because of its obvious use of fallacious reasoning: classic misdirection, and appeal to authority. The real question Cort is why are you doing this?

“Clonazepam is perhaps the most useful medication in chronic fatigue syndrome” according to the experts.
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
 
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).
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.