Using meds to create hypersomnia for Aggressive Rest Therapy?

[ukxmrv]

Not sure if this is a good idea. Personally my experience of drugging my body to rest doesn't work as I build up tolerance to the drugs (even if I rotate them) and my sensitivity to drugs means I get side effects.

It sounds too much like the dangerous sleep therapies tried out on PWME in the 90s. I've met survivors of this including one woman who went from the sleep clinic to a psych hospital.

Here's a report of one doctor who was doing this to ME patients. I was seen at his Charing Cross clinic. There they tried to convince me to become a private patient and be drugged for a week as a "cure".

http://www.duncancampbell.org/content/preying-hope

and some more info on sleep therapy (which I think it was based on)

https://en.wikipedia.org/wiki/Deep_sleep_therapy

 

[Apple]

I've sort of done this, by accident.

I go through phases of crippling insomnia, thanks to a diseased bladder. Last year I got put on Trazodone which made me need 10-12 hours sleep a night and left me unable to function (at all) before 1 or 2pm the following day regardless of how well i'd slept. So I was pretty much lying in bed in the dark from 10pm til 2pm the following day not moving except to pee. (as well as spending the majority of the day in bed or sofa when I was 'awake') I stayed at this dose for 6+ months.

The med also prevented me from using my brain too much or going out and doing things. I would consider that pretty major aggressive rest therapy.

Do I feel better for it? Sort of.

Pros:
-It got me out of the boom and bust cycle which I had been in for years. I was in a near constant crash/state of PEM from overdoing it all the time. Less PEM = less pain, less flu like symptoms, less unbearable/torturous/feelinglikeyouredying symptoms.
-Interestingly my POTS has improved (!) I still struggle with orthostatic intolerance, but I'm a lot less tachycardic. The tachycardia comes back/worsens when I boom and bust and when I don't sleep/rest enough. ( totally blows the deoconditioning theory out of the water for me!)
-When I do overdo it - I feel like my PEM isn't as prolonged. (perhaps because beforehand I never allowed myself to fully recover before overdoing it again);

Cons:
-My legs have become considerably weaker and I cannot seem to get them back to where they were before no matter how hard I try and push through it.
-Ultimately my baseline has become lower.

So while I do sort of feel better. I don't recommend it.

My advice would be to take a few weeks, rest heavily without meds and try and train yourself to find a happy baseline where you are not boom and busting but you are still active enough that you don't become weaker. Learning to rest and pace will help you. Deconditioning yourself will not.

 

[Esther12]

Sounds a bad idea to me.

 

[CFS_for_19_years]

Pregabalin (Lyrica) can be taken during the day and at night. Based on what I've read here, some people can't even tolerate low doses. Taking it doesn't lead to dependency, although withdrawing it abruptly has led to seizures in people who had no history of seizures. I've taken it now for over ten years for fibromyalgia.

It can cause weight gain due to appetite stimulation and fluid retention. In the US it is a controlled substance because during clinical trials former drug users said they "liked it" at doses of 600mg, enough to put most people to sleep for an entire day.

With the first one or two low starting doses I felt a feeling of euphoria which never happened again.

Sleep induction is dose-related. I would end up napping during the day if I took 150mg twice a day, so I take less. Whenever pregabalin is prescribed, it is done with a low starting dose, and increased as you are able to tolerate it.

 

[PennyIA]

What is the main difference b/w pacing and resting? Is it mostly maintaining enough movement to prevent deconditioning but still doing as little as possible? I know that I am overdoing it because I am getting PEM.

From what most people are saying, resting is going to make POTS (which I seem to have) a lot worse.

To me pacing is more like when I need to get housework / work-work done. And I limit the active times to short stretches of time spaced apart with rest breaks. When I'm at a severe crash state, 5 minutes of housework is enough for several hours of rest. When I'm healthier, I can manage 20 minutes of activity pretty easily before needing to take a small break (say 5 minutes). Thankfully my work-work is REALLY flexible with me and I can work from home a lot and build in as many breaks as I need to... (well at least until a serious crash - which puts me on short term disability).