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

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

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

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

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

Dr. Cheney and Klonopin


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

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

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

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


Gabby (Nielk on the Phoenix Rising Forums) had a different experience. She agreed to her doctor's recommendation that she up her dose (to 3 mgs/night), only to find her old symptoms worsening over time and new ones (high blood pressure) appearing. Her withdrawl from 8 years of high-dose Klonopin use ultimately landed her in a month-long stay at a detox clinic in Florida. As Klonopin slowly washed out of her system Gabby's pain, fatigue, blood pressure, mood and sleep symptoms improved.
Not a "Do Not Use Klonopin" Blog


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

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

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


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

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


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

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

Klonopin, as well as all Benzodiazepine drugs have a very difficult and dangerous withdrawal course.
My story of Klonopin use as an ME/CFS patient:


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

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

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

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


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

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

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

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

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

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


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

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

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

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

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

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

These will hopefully diminish as time goes on.

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

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

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

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


Dr. Klimas' Comments


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

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

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

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

Dr. Bateman's Comments


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

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

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

Dr. Lapp's Comments


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

There are a couple points to make:

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

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

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

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

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

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Comments

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.
 
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.
 
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 (?).
 
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.
 
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....
 
I added another section - you can now review Klonopin plus two more benzodiazepines.
 
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.
 
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.
 
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.
 
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
 
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.
 
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...... :eek:
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.......
 
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.
 
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]
 
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 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, 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....
 
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.
 
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.