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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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I stopped having multiple awakenings per night when I quitted (again) gluten and casein. My sleep is still crap, but at least I dont wake up 2-6 times per night. Now I wake up one time or none (I am not counting the last one when you wake up). This has been going only for 4 days since I quitted gluten and casein but the change is very clear. I was eating whole spelt bread and such. God it tasted good with some organic mermelade. You try to cheat on healthy food but it doesn´t works.
Sushi of course the question is... what treatment?
how do you get klonopin? I think it is very effective for sleep apnea which doesn't have many options for medication treatment
I wonder if the fact that I have hypertension could actually make me feel better in the morning than people with hypotension.
I think there's something in that. I feel much better in the morning now that I'm doing things to make sure I don't wake up with low blood volume. For me, it's the difference between feeling hit by a truck in the morning or feeling (relatively) refreshed.
Dust mites can certainly be a problem if you wake up congested. It's hard to keep dustmites out of the bed, though. Washing sheets twice a week in anti-dustmite detergent (if you can tolerate it) or with steam treatment (if your washer has that feature) can make a big difference, but it's a lot of work.
I think I probably do often have low blood volume (I often have polyuria at night which I cannot counter with desmopressin, indicating that it is an osmotic diuresis), but at some point in the illness my body decided to compensate by another means, hence the hypertension.
how do you get klonopin? I think it is very effective for sleep apnea which doesn't have many options for medication treatment
Have you tried fludrocortisone (Florinef) instead of desmopression? Low blood volume could be an aldosterone problem rather than a vasopression problem. That's more common in ME/CFS, I believe.
I'm having a lot of trouble getting up these days- it's like I am so drained of energy, like lifting my head off the pillow is an effort. As well as this my sleep is crazy. I go to bed and crash out like I have been unconscious, but then wake up suddenly in the early hours, and then toss and turn all night till I finally drift off again just before dawn. BP is low again which might be why- anyone else have this total morning exhaustion? Oh yes and I have always got some sort of headache too in the morning. I have a lot of issues with NMH so guess this is all part of it, just wondering if anyone else feels so rubbish first thing in the morning.
Morning
I meant to comment earlier than this but kept forgetting - or simply didn't find the time. Sorry.
Morning headaches. Like a hangover? Could be an indication of many things I suppose - but could also suggest oxygen starvation which is a further indication - along with restlessness and constant waking - of sleep apnea.
This might sound daft or rude, but do you snore? If so then this could be a further indication of apnea or apneoa however you prefer to spell it.
You can read about apnea on the forum I suspect and most certainly online.
Check out what else it can lead to e.g. muscle issues, fatigue etc. etc. Indeed many of the symptoms - and you don't need to snore to have apnea and you can have apnea and ME - are similar to what we with ME experience.
I have had sleep problems for over 14 years - ever since I had this diagnosis of ME. For 10 years I have been asking for a sleep study - because I wanted to rule out apnea and see if I could receive treatment for apnea should I have it.
Much of those years were wasted because the doctors felt it was all part and parcel of my ME. And why shouldn't they? When sleep disturbance, waking unrefreshed etc. are key symptoms of ME.
Anyway, long story short... 2 months ago I finally got a sleep study in hospital overnight - thanks to my local NHS ME Service.
Diagnosis: Obstructive Sleep Apnea.
Now I am waiting to undergo a further home-test for some reason unbeknown to this man and beast. I wish they'd get on with treatment.
Treatment comes in 2 forms - outside of sleep hygiene which we should really have tried ourselves and is pretty basic: a mouth guard thing that opens airways at night (which I tried a few years back and hated) or oxygen piped in through a mask at night (which I would like to try).
The hospital sleep study was fascinating. Well, I thought it was. The Phd boffin went through all the results with me and it was great - or not great depending - but interesting stuff and confirmed what I had suspected:
My brain cell was not getting enough oxygen when I was sleeping. When the level dipped below (I forget), it woke me up. This happened rather a lot - like for 5-10 minutes at a time.
So. Sleep apnea is a common misdiagnosis for ME, but don't let that stress you out. My own feeling is that if treatment for Apnea relieves me of the day-to-day distress I have endured for all these years - even to a small extent - I couldn't give a fig.
And anyway, I do know several people who have ME and apnea. Once of whom lives near to me and is being treated as 'severe' by the NHS ME Service with home visits and wears his oxygen mask at night.
Hope that's useful. I'll probably try and write an article about it. Been meaning to but never get the time
I have that problem too ... so my fiance usually sleeps in the guest room He can stay up til 1am and get up at 6:30am with no problemsbut how can I get my hubby to bed at 9pm? wouldn't be as bad if I didn't take sleep meds but if you do the last thing you want is someone waking you up 1- 2hrs after going to sleep.
I have that problem too ... so my fiance usually sleeps in the guest room He can stay up til 1am and get up at 6:30am with no problems
I snore, but it's ME-related, not weight-related. And my fiance isn't bothered because he sleeps like a rock. Plus my snoring is undoubtedly melodious and charming!Is that because you snore?!!