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

Clonazepam-Klonopin-me-cfs

Posted by Cort Johnson

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

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

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

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

Dr. Cheney and Klonopin

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

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

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

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

Gabby’s Experience

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

Not a “Do Not Use Klonopin” Blog 

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

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

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

GABBY’S STORY: KLONOPIN USE AND WITHDRAWAL

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

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

Klonopin: How it works

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

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

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

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

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

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

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

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

My problem with Klonopin Use

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

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

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

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

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

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

My recovery from Klonopin Use

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

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

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

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

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

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

These will hopefully diminish as time goes on.

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

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

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

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

Dr. Klimas’ Comments

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

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

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

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

Dr. Bateman’s Comments

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

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

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

Dr. Lapp’s Comments

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

There are a couple points to make:

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

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

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

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

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

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{ 77 comments… add one }

  • Dreambirdie July 5, 2012, 11:29 am

    So glad to hear that Gabby (Nielk) recovered from her withdrawal ordeal on the Klonopin. May this be a lesson for all who think these drugs are safe options for all CFS patients.

    It baffles me completely how doctors consider prescribing such toxic addictive drugs like the benzos, for their patients to take on a regular basis. Taking them is like playing Russian roulette with your brain. I have taken both Klonopin and Ativan, each for less than a week. They threw me into a mood altering circus of negative side effects, exacerbated all my usual CFS symptoms, and lingered for almost a week after I stopped taking them—and this was just from 3 doses/3 days in a row each time. That was enough to convince me that these drugs should be used only in a crisis and as a last resort.

  • Nielk July 5, 2012, 12:20 pm

    Hi Dreambirdie,

    I'm sorry that you had such a bad experience with Klonopin as well. I think as a CFS population we are generally more sensitive to medications than the population at large and therefore need to be even more careful with what we are prescribed.

  • Cort July 5, 2012, 12:28 pm
    SickOfSickness

    I didn't vote because my answer doesn't fit.

    I crave it sometimes. I'm not sure if my cravings coincide with not having it recently, but that seems likely. I use it selectively and eat less than average usually.

    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 (?).

  • beaker July 5, 2012, 3:17 pm

    some clarifications please on the survey ( I'll wait to take til you answer) :
    on the "other benzos" page. do you wish to include the atypicals ( ambien, lunesta, etc… ) ?
    what if one has tried numerous other benzos ? the answers to the follow ups would be very different ( how long, how much, etc… )

    Perhaps it would be also helpful to note drug "holidays" and what happened. Dosages and time frames on your survey might be different for before and after.

  • Cort July 5, 2012, 3:53 pm
    beaker

    some clarifications please on the survey ( I'll wait to take til you answer) :
    on the "other benzos" page. do you wish to include the atypicals ( ambien, lunesta, etc… ) ?
    what if one has tried numerous other benzos ? the answers to the follow ups would be very different ( how long, how much, etc… )

    Perhaps it would be also helpful to note drug "holidays" and what happened. Dosages and time frames on your survey might be different for before and after.

    Thanks Beaker – I'd like to stay away from atypicals…I did think about what if someone had tried numerous other benzo's – I think I will add another section for that – so you can at least do two….

  • Cort July 5, 2012, 4:18 pm

    I added another section – you can now review Klonopin plus two more benzodiazepines.

  • beaker July 5, 2012, 7:02 pm
    Cort

    I added another section – you can now review Klonopin plus two more benzodiazepines.

    Adding space for more then one helps. But which two to chose ?<gets out coin> 😉 LOL. I think if someone's been around long enough they've tried just about everything…..

    Thanks for the clarification on the atypicals — they were on the link you had to the list of benzos, so it was hard to tell if you meant to include them.

  • satoshikasumi July 5, 2012, 8:49 pm

    While it has been commonly used in CFS, there have been no controlled studies of klonopin in this disease. It is not known what the most effective dose is. It probably works by improving autonomic dysfunction and sensory overload. The symptoms of klonopin withdrawal in normal people are similar to the neurological symptoms of CFS.

    However, it has been studied in panic disorder at up to 4mg/day and in epilepsy at up to 20mg/day. So it is not clear that 3mg is an excessive dose per se.

    The studies on panic disorder indicate that a major risk of klonopin at all doses is depression, with the patients who got the drug having six times the risk of depression compared to the placebo group. Depression alone could explain this person's worsening from klonopin.

    Also, the person in this story could have improved more for reasons other than stopping klonopin, because she did not just taper off, but went to addiction treatment. Addiction treatment always includes elements of CBT as part of the therapy, and there is some evidence that CBT decreases the reporting of CFS symptoms.

  • Cort July 5, 2012, 10:15 pm
    satoshikasumi

    While it has been commonly used in CFS, there have been no controlled studies of klonopin in this disease. It is not known what the most effective dose is. It probably works by improving autonomic dysfunction and sensory overload. The symptoms of klonopin withdrawal in normal people are similar to the neurological symptoms of CFS.

    However, it has been studied in panic disorder at up to 4mg/day and in epilepsy at up to 20mg/day. So it is not clear that 3mg is an excessive dose per se.

    The studies on panic disorder indicate that a major risk of klonopin at all doses is depression, with the patients who got the drug having six times the risk of depression compared to the placebo group. Depression alone could explain this person's worsening from klonopin.

    Also, the person in this story could have improved more for reasons other than stopping klonopin, because she did not just taper off, but went to addiction treatment. Addiction treatment always includes elements of CBT as part of the therapy, and there is some evidence that CBT decreases the reporting of CFS symptoms.

    One of the things that stuck for me was how much worse Gabby got over time….Ideas of suicide are apparently not uncommon in Benzodiazepine withdrawal syndrome and there was the high blood pressure and other symptoms. I believe up to 4mgs is recommended in bipolar disorder – so it can go higher but then again there's the hypersensitivity to drugs to deal with in ME/CFS and the 'central sensitivity' that Dr. Bateman referred to. I saw a thread on the Forums where people were taking very, very low doses of the drug.

    I think the point about behavioral therapies is a good one though. I saw a benzodiazepine withdrawl program which used meditation, yoga, CBT – about 10 different kinds of alternative therapies of that ilk to calm the autonomic nervous system down as withdrawal occurs. Dr. Freidberg has said doing these practices can help get patients off drugs.

  • rlc July 5, 2012, 10:37 pm

    Hi all, General information on Klonopin can be found here http://www.drugs.com/klonopin.html

    Information on side effects of Klonopin can be found here http://www.drugs.com/sfx/klonopin-side-effects.html

    Klonopin interacts badly with 777 other different drugs see http://www.drugs.com/drug-interactions/clonazepam,klonopin.html

    If people are taking more than one prescription drug they can enter the names of the drugs on this site http://www.drugs.com/drug_interactions.html and it will tell them if there are any bad interactions between these medications. People can also enter most vitamin and mineral supplements and other supplements and herbs, and it will tell them if they react badly with other drugs they are taking.

    Doctors are notoriously bad at checking for drug interactions leading to massive problems see http://chronicfatigue.about.com/od/treatments/a/druginteract.htm

    Glad your feeling better Nielk, personally I do not understand why a doctor would use these kinds of medications to treat ME, they know that ME is a long term illness, and that the patients will build up a tolerance to the medication and have to take more, running the risk of side effects, and the patient will become addicted and if they every try to come off the drug they will go through hell. My opinion is it isn’t a wise choice for treatment unless it is very short term.

    All the best

  • Hope123 July 6, 2012, 12:20 am

    I would be hesitant to think that Klonopin is the most commonly used drug in CFS unless there is data backing this point up. Many of the people I know with CFS are not taking this medication.

    Some of Klonopin's use might depend on when it was prescribed and the age of the clinician. Before the era of SSRIs and other sleep/ anxiety/ epilepsy medications, Klonopin was used a lot more but part of the impetus for developing these other meds were the side effects from Klonopin and other benzos. Klonopin is no longer consider a first-line drug for many conditions. Also, clinicians tend to use drugs they are more familiar with so if they trained in the past, they are more likely to use it than younger clinicians. I think if the Klonopin does not seem to be serving someone well or they are concerned about side effects, they might want to talk to their doc about other options as there might be newer drugs that work better.

  • Cort July 6, 2012, 4:41 am
    Victoria

    Try it Victoria. Adding pictures to your posts is fun stuff!

    Have been dying to load some photos to illustrate a post ever since I got my home computer. But I did find I can do more on my office computer, since we've got all sorts of software here. My home computer is limited.

    I will try it as soon as I get home from work tonight.

    If I can do it, my posts on the gardening thread will be supported by photos of what I am talking about.

    Victoria :)

    PS In fact, I'd roll over twice & bark 3 times to snuggle up to Sean Connery. It's the eyes, you see, I love twinkling eyes.

    Is he as good looking in real life?

    A man doesn't have to be good looking to have sex appeal. Sometimes Actors look very different in real life. Many of the younger female actresses look very ordinary when they step out in public without make-up.

    And we all find different characteristics pleasing to the eye. It might be the eyes (for me), the physique for someone else, the smile, or the way someone talks or laughs, that is attractive.

    Or dimples appeal to some, on the chin, near the cheeks, on the…… 😮

    That question kind of begs for a survey…what are the most common drugs used in ME/CFS? That's a good question with the Stakeholders Meeting coming up…..Hmmmmm…….

  • Nielk July 6, 2012, 4:55 am
    Cort
    satoshikasumi

    While it has been commonly used in CFS, there have been no controlled studies of klonopin in this disease. It is not known what the most effective dose is. It probably works by improving autonomic dysfunction and sensory overload. The symptoms of klonopin withdrawal in normal people are similar to the neurological symptoms of CFS.

    However, it has been studied in panic disorder at up to 4mg/day and in epilepsy at up to 20mg/day. So it is not clear that 3mg is an excessive dose per se.

    The studies on panic disorder indicate that a major risk of klonopin at all doses is depression, with the patients who got the drug having six times the risk of depression compared to the placebo group. Depression alone could explain this person's worsening from klonopin.

    Also, the person in this story could have improved more for reasons other than stopping klonopin, because she did not just taper off, but went to addiction treatment. Addiction treatment always includes elements of CBT as part of the therapy, and there is some evidence that CBT decreases the reporting of CFS symptoms.

    One of the things that stuck for me was how much worse Gabby got over time….Ideas of suicide are apparently not uncommon in Benzodiazepine withdrawal syndrome and there was the high blood pressure and other symptoms. I believe up to 4mgs is recommended in bipolar disorder – so it can go higher but then again there's the hypersensitivity to drugs to deal with in ME/CFS and the 'central sensitivity' that Dr. Bateman referred to. I saw a thread on the Forums where people were taking very, very low doses of the drug.

    I think the point about behavioral therapies is a good one though. I saw a benzodiazepine withdrawl program which used meditation, yoga, CBT – about 10 different kinds of alternative therapies of that ilk to calm the autonomic nervous system down as withdrawal occurs. Dr. Freidberg has said doing these practices can help get patients off drugs.

    It is true that, at the detox/rehab facility, I received many good services besides just medical detox from the drug. There were many group lectures and group meetings where they worked with us to teach us tools of how to manage life in a more effective way. In addition there was an intensive personal track where one is followed by a counselor, psychologist, psychiatrist, spiritual counselor and in my case a pain management counselor.

    I agree that all these services were tremendously beneficial to me but, it is also true that my very deep depression lifted even before all these services really kicked in.

    It is therefore obvious to me that this depression was a direct cause of my long term Klonopin use.

    What is amazing to me is that for the past 8 years I have been followed by three doctors who had the knowledge that I was taking Klonopin all along. They also knew about my depression and not one made the connection with the two. Moreover, towards the end, I brought up the fact that it might be caused by the Klonopin and one of my doctors consulted with a pharmacologist and came back with a negative answer.

    This is the reason that I decided to go public with my story. I am hoping to raise awareness about this risk. I might be in the minority of people who reacts this way but, I am not unique in my situation.

  • Cort July 6, 2012, 5:11 am

    Here's a weird thing about benzodiazepine withdrawal syndrome – if you become tolerant, getting off benzo's can actually make the neurons more excitable – not less….which is one reason why, I suppose, practitioners focus on these stress reduction therapies.

    From Wikipedia..
    Benzodiazepines potentiate the action of the neurotransmitter GABA. When this potentiation is sustained by long-term use, neuroadaptations occur which result in decreased GABA activity and increased excitability of the glutamate system. When benzodiazepines are stopped, these neuroadaptations are "unmasked", leading to excitability of the nervous system and the appearance of withdrawal symptoms. Increased glutamate excitatory activity during withdrawal is believed to result in kindling phenomena.[82] Those who have a prior history of withdrawing from benzodiazepines are found to be less likely to succeed the next time around.[83] Repeated benzodiazepines withdrawals, like with alcohol withdrawal, may lead to sensitization or kindling of the CNS, possibly leading to worsening cognition and symptomatology and making each subsequent withdrawal period worse.[84][85][86]

  • satoshikasumi July 6, 2012, 1:27 pm

    Cort, I think if you look at a list of benzo withdrawal symptoms, they are pretty similar to the neuro symptoms experienced by CFS patients, including brain fog, autonomic disturbances, word-finding problems, paresthesias.

    This could explain why klonopin can help some people, at least for a time. It also suggests that part of the disease process is a natural process that mimics the sensitization seen in withdrawal states, even if the patient has never used drugs. Maybe this is caused by cytokines? There is plenty of evidence that the sympathetic nervous system is always turned on.

    I have known other patients with CFS who were helped by stopping all benzos and sleep aids in a detox setting. The people I know also had a problem with comorbid depression. It is astonishing how often psychiatrists prescribe benzos to depressed patients and fail to recognize them as causing the disorder to get worse or failure to respond to antidepressants.

  • Cort July 6, 2012, 3:48 pm

    I received an email from someone whose son did not fare well using Klonopin under Dr. Cheney's care: she agreed to share the email so long as her son's name was removed. (I called him "John'"

    Cheney's treatments absolutely made' John' worse. As 'John' got worse, he needed more Klonopin and Neurontin to help his increasingly bad pains and gut symptoms, including hypoglycemic feelings of anxiety and terror, and terrible wrenching jerks in his gut. He could sleep, but would wake up with these awful feelings and pains, and kept needing more K. and N. Ultimately Cheney was prescribing 8 mg. EIGHT! of Klonopin AND over 3000 mg of Neurontin!! 'John' was definitely addicted but would not consider that the drugs were adding to his problems, as he had had all of these pains and feelings since starting in 1991 with ME/CFS, but not as severely. He blamed it all on Cheney's other drugs, but his symptoms were those of addiction.

    My husband had done extensive research on benzodiazepines as 'John' was progressively getting worse, and these are attached below. I would ask that you review these and post on Phoenix Rising. Others need to know just how dangerous they are. Cheney even essentially says they are good except when they are very bad. But that did not factor into his prescribing doses way too high for 'John'.

    (one document is linked on Phoenix Rising's Klonopin page as a guide to withdrawal)

  • Cort July 6, 2012, 3:53 pm
    satoshikasumi

    Cort, I think if you look at a list of benzo withdrawal symptoms, they are pretty similar to the neuro symptoms experienced by CFS patients, including brain fog, autonomic disturbances, word-finding problems, paresthesias.

    This could explain why klonopin can help some people, at least for a time. It also suggests that part of the disease process is a natural process that mimics the sensitization seen in withdrawal states, even if the patient has never used drugs. Maybe this is caused by cytokines? There is plenty of evidence that the sympathetic nervous system is always turned on.

    I have known other patients with CFS who were helped by stopping all benzos and sleep aids in a detox setting. The people I know also had a problem with comorbid depression. It is astonishing how often psychiatrists prescribe benzos to depressed patients and fail to recognize them as causing the disorder to get worse or failure to respond to antidepressants.

    I was surprised by how familiar the benzodiazepine withdrawl symptoms were :).. The sensitivity to odors, lights, noises, etc really leapt out at me. I feel Dr. Cheney's description of what is happening in ME/CFS – the overstimulation present – fits very well for me…Obviously Klonopin helps some people with that – Gabby's own doctor – used it well and doesn't work for others – Gabby and 'John', for instance. I've always wanted to try Klonopin…I think I still would but at low doses and probably intermittently….

  • Nielk July 6, 2012, 4:09 pm
    Cort

    I received an email from someone whose son did not fare well using Klonopin under Dr. Cheney's care: she agreed to share the email so long as her son's name was removed. (I called him "John'"

    Cheney's treatments absolutely made' John' worse. As 'John' got worse, he needed more Klonopin and Neurontin to help his increasingly bad pains and gut symptoms, including hypoglycemic feelings of anxiety and terror, and terrible wrenching jerks in his gut. He could sleep, but would wake up with these awful feelings and pains, and kept needing more K. and N. Ultimately Cheney was prescribing 8 mg. EIGHT! of Klonopin AND over 3000 mg of Neurontin!! 'John' was definitely addicted but would not consider that the drugs were adding to his problems, as he had had all of these pains and feelings since starting in 1991 with ME/CFS, but not as severely. He blamed it all on Cheney's other drugs, but his symptoms were those of addiction.

    My husband had done extensive research on benzodiazepines as 'John' was progressively getting worse, and these are attached below. I would ask that you review these and post on Phoenix Rising. Others need to know just how dangerous they are. Cheney even essentially says they are good except when they are very bad. But that did not factor into his prescribing doses way too high for 'John'.

    (one document is linked on Phoenix Rising's Klonopin page as a guide to withdrawal)

    Cort,

    How is "John" doing now? Is he still on these meds? I hope not. I hope he is recieving help with this.
    If they need any advice, please give them my e-mail address.

  • MishMash July 6, 2012, 6:41 pm

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

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

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

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

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

  • alice July 6, 2012, 7:49 pm

    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".

  • Cort July 6, 2012, 7:53 pm
    MishMash

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

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

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

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

  • Sushi July 6, 2012, 8:01 pm

    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

  • satoshikasumi July 6, 2012, 8:08 pm

    "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

  • heapsreal July 6, 2012, 8:34 pm

    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!!!

  • taniaaust1 July 7, 2012, 12:39 am
    Cort

    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

    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.

  • MishMash July 7, 2012, 1:19 am

    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.

  • heapsreal July 7, 2012, 2:06 am

    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!!!

  • taniaaust1 July 7, 2012, 2:06 am
    Cort

    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).

  • satoshikasumi July 7, 2012, 8:12 am
    MishMash

    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.

  • jenbooks July 7, 2012, 10:40 am

    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.

  • Jackofit July 7, 2012, 10:48 am

    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?

  • MishMash July 7, 2012, 11:00 am
    satoshikasumi
    MishMash

    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.

  • Cort July 7, 2012, 11:58 am
    satoshikasumi

    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..

  • Cort July 7, 2012, 12:05 pm
    taniaaust1

    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).

  • Cort July 7, 2012, 12:16 pm
    Jackofit

    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.

  • satoshikasumi July 7, 2012, 7:36 pm
    Cort
    Jackofit

    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

  • john66 July 7, 2012, 8:05 pm

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

  • Nielk July 7, 2012, 9:19 pm

    Thanks J. and all others who wish me well.

  • taniaaust1 July 7, 2012, 9:31 pm
    Cort

    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.

  • taniaaust1 July 7, 2012, 10:08 pm
    Jackofit

    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.

    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.

    /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?

    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.

    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.

    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.

    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?

    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.

  • Hip July 7, 2012, 11:56 pm

    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.

  • Cort July 8, 2012, 7:25 am
    satoshikasumi
    Cort
    Jackofit

    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

    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.

  • Calathea July 8, 2012, 7:26 am

    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.

  • satoshikasumi July 8, 2012, 12:41 pm
    Cort

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

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

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

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

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

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

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

  • Calathea July 8, 2012, 2:33 pm

    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.

  • Cort July 8, 2012, 2:45 pm

    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.

  • Cort July 8, 2012, 3:19 pm
    Cort

    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.

    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

  • Nielk July 8, 2012, 3:51 pm
    Cort
    Cort

    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.

    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

    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.

  • MishMash July 8, 2012, 7:45 pm

    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.

  • heapsreal July 8, 2012, 8:02 pm
    MishMash

    Calathea,

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

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

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

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

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

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

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

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

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

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

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

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

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