"Fence" by David S. Bell, MD
Maybe this isn't so much an answer to the question as a possible solution. I had already found that Clonazepam greatly helped me to sleep, especially when I was having one of those "mind racing" kind of nights that just wouldn't quit. When I found this article in Dr. David Bell's Lyndonville News, I knew why:
The clinical notes for this newsletter is kindly suggested by a reader who sent information to the website. It is extraordinary how much knowledge and information is available, and really needs to be collected and presented. It is because of this that I would like to re-organize the research group (see below).
For years I have said that clonazepam is perhaps the most useful medication in ME/CFS, and because of the notes of a reader, I now understand why. Clonazepam is a medication distantly in the anti-seizure and benzodiazepine class. I say distantly because it is different from Xanax™ or Valium™. Clonazepam has a long duration of action, and is more gentle. It has no euphoria and I have never seen anyone become addicted to it. In some patients and in the right dose it improves the symptoms of ME/CFS, particularly sleep and general malaise; for some, it increases energy and activity.
The effect in reducing fatigue has always been confusing, as it is a medication that should cause tiredness. Persons with ME/CFS should not be able to tolerate it. There are two broad categories of ME/CFS; one is the “heavy as a log” tiredness where it is easy to fall asleep, and persons drink coffee to stay awake. This type of CFS is milder, and relatively easy to treat. Clonazepam does not help in this type. The second type is the “wired and frazzled” where despite exhaustion, persons cannot sleep and they are unable to take any stimulants. Clonazepam can help in this type and it is not because of the simple explanation of anxiety. This type of ME/CFS is neuro-excitatory, and it may be that the benefit is related to effects of clonazepam on the sympathetic nervous system. My thanks to the kind reader who sent in the information and references.
Dr. Bell's Lyndonville News website is nothing less than great. And not only does he take really good pictures, he shares them freely.