This is my thought process on insomnia and benzos to treat insomnia. Take into consideration that cfsme is chronic and appears to be life long but varies in one person a great deal.
Every few years there's always something on the news about sleeping tablets shorten life span or increase dementia etc. But there's never a double blinded placebo study showing one's health after 10yrs of untreated insomnia vs someone using benzo's/Z-drugs nightly or intermittently. What I'd like to see is if it's the insomnia causing the health issues or the medication causing the health issues???
So if you have cfsme and insomnia is one of your worst symptoms, what are you suppose to do? I know I feel alot better after getting 5-7hrs of medicated sleep vs 2-3hrs of light restless, interrupted sleep. Personally I often wonder how bad some people's sleep was, when they say they wished they'd never taken them. One reason I think of is that if you never took sleep meds than you would still have sleep issues, as Many symptoms like insomnia in cfsme never resolve.
I've spoken to a few people who have had terrible sleep issues and for a variety of reasons never took anything for sleep. None of them were able to work, as they spent almost their entire life waiting for that small gap in their life where they could get an hr or 2 of sleep. They might have one option a day like this or several options a day like this and at any time of the day or night.
Then I've heard of people who took benzos for years and decide to come off, in many different types of tapering systems. Honestly their sleep didn't seem that different post benzo use compared to those who never used benzo's mentioned just above ie sleep was crap. Depending alot on the dose one may have got up too.
Then there's people like myself who continue to use sleep meds. I still have nights where I might not sleep at all until the following night and can be in bad cycles of sleep for a week or so but then I will go back into cycles of getting 5-7 hrs of sleep a night for a few weeks.
Another thing I have seen is that a mecfser may get 6-10hrs sleep and wake up feeling like crap. When they see their dr they say they feel crappy and tired and that they feel like they need to sleep more. There can be some confusion that fatigue means they need more sleep, so the dr puts them on sleep meds. Maybe it's a sleep quality issue but rarely meds help quality but more so the quantity. So they can be put on meds but not really needing them for sleep quantity. Eventually you become reliant on them when it wasn't necessary.
I haven't seen it much of late but about 10yrs ago and earlier, it seemed common for drs to put cfsers on klonopin for sleep and would start at .5mg. There were some that just stayed at that dose for years and were fine, but others that got a tolerance to it within a few weeks and lift the dose to 1mg and then 2mg, then 3mg. Some of these drs would then realise the dose was getting too high and would just cut them off. Cruel bastards. A half good dr probably would have started weighing things up when 1mg stopped working and looking at changing them over to another Med or maybe tapering them off 1mg if needed and look at other alternatives. Tapering someone off 3mg plus, I think is a massive dose for most to try to come off and probably should never have been on such a dose without a really good reason.
If you could cure a cfsers insomnia would that fix cfsme, no. But cfsme with insomnia just adds another thick layer of misery to cfsme. One thing for sure is that we need some new and effective treatments for sleep in cfsme. This would help improve our quality of life.
It's a tough situation to know which way to go.
