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

For many people their pre-Klonopin time was not hell at all. It can be a gruesome drug to get off.

As for Gabby, I can't speak for her.
 
Hello,

Would like to ask you about what is recommended maximal usage of clonopin lets say per month?

I use it only in times of stress. I try to use it not very much lets say once a month but i am considering increasing the dose. Becouse sometimes stress take me into cycle of not sleeping - wired and tired fatigue and it take many days to recover.

So how often it is possible to take it at max? Once or twice per week one time dose not exceeding lets say 0,75 mg is tolerable?

And of course when no stress event occur to not take anything of course

What do you think?
 
So how often it is possible to take it at max? Once or twice per week one time dose not exceeding lets say 0,75 mg is tolerable?
This would vary a great deal from person to person. It is likely that genetics plays a part here. Some take low doses of klonopin every day without seeming to have a problem. Others get into trouble with regular dosing. If you start needing a larger dose, that is usually a sign of becoming tolerant.
 
This would vary a great deal from person to person. It is likely that genetics plays a part here. Some take low doses of klonopin every day without seeming to have a problem. Others get into trouble with regular dosing. If you start needing a larger dose, that is usually a sign of becoming tolerant.
Thank you. I will need to go to vacation on at least one month where i dont need to take anything.

Have a nice day