How Might Benzodiapines (Ativan, Clonazapem) help with ME/CFS?

I use a split pill of the lowest dose pill of clonazepam to get some sleep when trazodone has failed.

Also, when my FM symptoms are extreme, a higher dose does tone things down, providing some sense of sanity possible.


So, occasional or intermittent use for me has never resulted in any need for dose escalation (physiologic dependence).

 

I used to take a temazepam tab once a week at bedtime That was all I was allowed. I felt as though I had a proper, truly refreshing sleep and I had what felt like normal energy levels for half a day at least. I felt well and it was wonderful. My GP told me that now in Australia it's only possible to have it prescribed by a psychiatrist and she (my GP) considers me too well adjusted to justify a referral.

 

I’m sure that the same will be said for most drug trials but I can’t be the only one who I’m really not keen at all in going anywhere near benzos.

All for I think good reasons some of which are solid guesses based on how I react to things and family does, some guesses or presumption I suppose based on my ‘type’ of ME , some just plain I don’t like being out of it and reckon I’d end up being the group who couldn’t get off it if I had effects.

those who have sensible guts that come up similar to mine will probably be the same. Those who’ve sensible gut ideas the other way -perhaps due to other things that worked well for them etc I’d imagine would be more attracted to participate.

I don’t know how you balance that one other than to hope that such things would only ever be ‘an option’ ie a real choice and would continue being closely studied longitudinally given the nature of ME. So this could be borne in mind if there are likely to be types more vulnerable to issues or it working less well vs those it does. Because I don't think it is wrong if it is tested in those who put their hands up because their personal knowledge of themselves leads them to think they'd be more likely to benefit that be collateral damage for the validity of the outcome of the study. I could just see the nightmare if people got coerced onto them because the results were used to say 'most with ME benefitted' when the sample would surely self-select given the heterogenity of the condition.

Either way I’d be fascinated to know the why and the changes and where in the body and upstream/downstreams given as others have said the dramatic and perhaps counter intuitive to normal use/purpose effects

 

Just to chime in as yet another person with very severe ME who finds all symptoms (e.g. muscle fasciculations, tinnitus, pain, fatigue, brain fog, diarrhoea) either reduce or completely disappear on a small dose of lorazepam (1mg). I take it occasionally for panic attacks, the cessation of my symptoms is just a welcome side effect. My mind gets so clear, and I become so energised and full of creativity. It's kind of similar to the rush of energy I get after really overdoing something - like it kicks my body into overdrive, temporarily.

I also have been taking 7.5mg zopiclone nightly for about 18 months, and I think it has a similar effect - the strain of lying on my side makes my back muscles shake, but if I do it about an hour after taking zopiclone, there's no shaking and I can sleep.