Clonazepam
Clonazepam is a benzodiazepine that has polarised those ME patients who have taken it. Its affects seem to be more exaggerated than run-of-the-mill treatments. Anecdotal reports online indicate that a plethora of ME patients haven’t been the same again since starting Clonazepam. On one end of the scales, reports litter the Internet of those who list Clonazepam as their more effective treatment for ME, in some instances reaching remission (or close to it) after taking it. On the other end of the scales, Clonazepam has caused a number of patients to have their condition deteriorate significantly. In certain cases causing long term, negative side effects. Other patients have found it difficult to ween off the drug.
Mechanism of Action
The primary reason I trialled Clonazepam was to mitigate the consequence that over-stimulation has on me. This over-stimulation can take the form of many people being around, exciting events, lots of action and essentially anything that my brain can’t solely focus on. Clonazepam may solve this symptom due to potentially lowering Central Nervous System excitement.
Clonazepam may also help ME patients through its mechanism of action as a
- Sleep aid
- Energy enhancer
- Muscle relaxant
- Dysautonomia treatment
- Neuroprotector
- Restless Leg Syndrome Treatment
The Internet’s tributaries are scattered with anecdotal reports of ME patients and their Clonazepam experiences. Based on these recounts, I was more cautious and worried about taking Clonazepam than any other treatment I have ever tried.
A decade old article by Dr. Cheney that portrays this treatment in a positive light: http://www.prohealth.com/library/showarticle.cfm?libid=8021
An informative article about the potential pros and cons of Clonazepam can be found here:
My Experience
I began my Rivotril (the Australian version of Clonazepam) trial on the 28th of May and am continuing to take this drug. I currently take the low dose of 0.125mg in the morning. Higher doses cause me to experience drowsiness, as do night time doses. I haven’t noticed any significant or even definitive positive effects from the Rivotril. Since commencing the drug, several people have independently said that I seem to have slightly more energy than my normal ME self. Introspectively, I don’t deem myself to have more energy however I am also aware that it is often difficult to gauge long term, mild improvements in oneself. I haven’t noticed any negative effects from taking the Rivotril either.
When my Heart Skipped a Beat
Over the past few years I have experienced, on an intermittent basis, a heart related symptom. This entails my heart stopping for several seconds before resuming its metronomic rhythm. When I began testosterone treatment earlier this year, this symptom became more common (occurring several times a day.) I visited a Cardiologist in May 2012 and had an Echocardiogram performed. The Cardiologist concluded that I had an Ectopic Beat however in the absence of structural damage to the heart, he was not concerned by it.
I queried about the size of my heart as shown by the Echocardiogram and was told that I have an average sized heart. This somewhat surprised me due to my sedentary nature, thrust upon me by my illness. I was doubly taken aback due to the fact that studies have shown many ME patients to have small hearts. I am currently unperturbed by this symptom, partially due to its frequency having diminished over the past 2 months.
Diary
I began keeping my first diary at the age of 7. I had an obsession with the Guinness Book of Records and had believed the most obtainable record for me to break was that of the longest kept diary- 91 years. Three days after commencing my diary, I had stopped writing in it. It later dawned on me that I had an affinity for one day breaking a record that was not matched by my impartiality for diaries. Fast forward many years to May 2012 and I have begun writing my second ever diary. Every day I evaluate the pain I have suffered for that day, relative to an average ME day for me. This produces a number which is not derived from a standard ME disability scale but rather my own system. I also write a few sentences describing any aberrations in the day, any symptom variations and any medications that I have started or stopped. The purpose of my ME diary is to discover any symptom patterns, determine treatment efficacies more objectively and ultimately gauge my ME in a more scientific manner.
Have you looked into mercury poinsoning from amalgam fillings?
I got sick with cfs 28 years ago and have been bed ridden since.
I am mercury toxic and I got sick the week I had all of my amalgams removed with out precaution. I am going to start the cutler program for chelating mercury as soon as my mouth is clearec by a biological dentis to not have mercury.
I hope you check into this and please do the cutler protocol if you decide to chelate as you can get much sicker taking ALA and other chelators for mercury if not on his protocol. Best thing is it is cheap.
@Lynn Thanks for the information about amalgam fillings. Fortunately I’ve never had any fillings however someone else reading your comment may benefit from your words. 🙂
If clonezepam seems to heavy hitting- i have had really good results with low dose zanax – most docs are so worried about addictions with it – but like you and other CFS patients i seem to get a reverse effect from a drug that should posssibly make you sleepy – and instead it often gives me more energy -my ND is convinced that chronic infections wear on the nervous system thus taking a bit of the burden off the body – i also have not had the common side effect where you get use to a dosage and need more like a typical patient that uses it solely for anxiety. best to you.
I wrote about my experience with Klonopin, and tapering off, here:
http://www.bcnc.org.uk/klonopin-taper.html
I know there are no bio-markers for ME/CFS other PEM but this blogger who I have been following for some time seemed have a remarkable recovery and maybe it does have to do with the flora in the gut. I know patients recovery is all anecdotal to some degree but knowing her history it seems that she might have found something for a few people at least.
http://www.4wallsandaview.com/2012/04/amazing-grass-story-part-one-the-incident/
It would be interesting to add this to your experimentation.
I have CFS-ME and it was terrible, I just felt tired and winth a necessity of sleeping everyday. So my doctors order to stop taking it. I don’t understand why there are many doctors that recommend clonazepam when you have CFS. I take 75 mg of pregabaline every night and it has helped me a lot and don’t let me in that terrible state.
I had been diagnosed with CFS/ME for several years and was extremely unwell. Found a specialist doctor and he recommended low dosage Rivotril. I improved a little almost immediately and it helped to stabilise the illness with fewer relapses. Another 16 years on I am on a cocktail of medications that help me although I still have relapses if I do too much. For me Rivotril was a success.