Does your ME cause sleep inversion?

[Arnie Pye]

@Arnie Pye here’s the evidence

I was aware of the problem with diphenhydramine. I had really severe sleeping problems a few years ago and took the maximum dose of the stuff every night for several months. Eventually I got all sorts of new health problems developing that I traced to the diphenhydramine and I stopped taking them. The only symptoms I remember after all this time were the most violent restless leg symptoms I've ever had, and a conviction that I was developing galloping dementia.

 

[aza]

I believe ME clinicians should stop prescribing doxylamine. Diphenhydramine (in many OTC sleep or “nighttime” meds) is also powerful anticholinergic.

Hydroxyzine is an antihistamine and sleep medication in the same class and has no anticholinergic properties. It’s also generic and very cheap.

Hydroxyzine gives me immediate brain zaps!

 

[Hell..hath..no..fury...]

Hydroxyzine gives me immediate brain zaps!

I’m intrigued now. What’s a brain zap?

 

[aza]

I’m intrigued now. What’s a brain zap?

My scalp gets electric shock feelings and I have to shake my head and blink so I can focus on what's happening.

 

[NelliePledge]

I was hopeful my sleeping pattern would be a bit more normal due to the hour change for autumn/winter but no if anything it seems to feel more out of kilter because I’m not getting up any earlier and it goes dark early now.

This time last year I was busy moving house so didn’t notice this because I had to get up early quite a lot of the time.

Maybe I should go against my normal approach of trying to just go with what feels right and try to force myself to get up earlier. It just seems a bit daft to push myself like that on days when I don’t have anything planned

Just rambling out loud really. It actually would be daft as I’m not doing too well at the moment. PEM worsens sleep. Poor sleep worsens PEM ugh.

 

[Forbin]

If a lot of ME patients do have abnormal sleep patterns (I certainly do), I wonder how that might have affected all those studies on "morning cortisol" that they used to love to do on ME patients. It's probably not very sensible to test the "morning cortisol' level of people who would normally be waking up at, say, noon.

I went for a sleep test once. I was wide awake for six hours, slept for two (only after finally having to ask for a sleeping pill - which kind of shows how poorly I was being monitored).