Discussion in 'Sleep' started by Machair, Nov 5, 2012.
Do you take .5mg of clonazepam every night? if so how long have you been taking it?
Yes, every night. I actually started with xanax but the effect didn't last very long. I still use xanax now and then when i have a panic / anxiety attack triggered by whatever probably due to histamine intolerance or mast cell activation syndrome (not verified yet).
I've been taking clonazepam now for a month or so? I started out with 2mg and that reduced my brain fog somehow. Unfortunately i got tolerant to that dosage very quickly so i tapered off and then went off it for a few days. After a week i reintroduced clonazepam at 0.5mg just before bedtime and that works just fine for me. I'm even thinking to lower the dosage to 0.25mg or less.
2mg clonazepam gives me a completely different effect than a low dosage. Low dosage just makes me drowsy and doesn't do much about the brain fog.
Now i can sleep through the night at least, although it's not something i want to use longterm.
thanks for the info - I tried .25mg but it took ages to work and I was still awake at 1am after taking it at 10.30pm. I also felt really groggy the next morning.
I was going to try the .5mg and try taking it an hour or two before bedtime
It varies for me, but I don't usually feel too bad. My cervical lymph nodes are often swollen when I wake, and tend to shrink gradually after I get up. My sinuses are often quite congested when I wake, and these usually clear quickly after I get up. I suspect house dust mites as the current cause of that. I sometimes take a while to get my brain into gear, but I rarely have a headache.
I wonder if the fact that I have hypertension could actually make me feel better in the morning than people with hypotension.
maryb, maybe you'll do better on 0.5mg. It knocks me out within an hour.
I knew I'd get that question!
Not an easy answer since I see a specialist who does extensive testing and makes an individual treatment plan to fit your test results and your symptoms. So what works for me is only going to work for a small percentage. Sadly, this is not an illness where there is one treatment that works for most.
Basically, it is "do extensive testing and treat what shows up as abnormal."
how do you get klonopin? I think it is very effective for sleep apnea which doesn't have many options for medication treatment
If you are in the US any doctor (who is willing!) can prescribe it. I don't know about other countries.
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.
Well, I don't think I won the lottery last night, so hiring a housekeeper to do the laundry, vacuuming, etc., will have to wait for now, and there is no way I could do it all without suffering adverse effects from the exertion. PEM or blocked sinuses...think I will have to put up with the latter, as PEM means that progress towards improvement is halted.
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 was diagnosed with Obstructive Sleep Apnea, and I had a Dr prescribe me Doxepin (which did not work for me), then
Mirtazapine which I have been on for over 3 years now with only a small increase in dosage.
I'm reluctant to use any kind of steroid, and try to prevent the osmotic diuresis by avoiding overexertion, as it seems to follow that. I also have a water diuresis which does respond to desmopressin. It's of course not clear which type I am having until after taking the desmopressin. If it works, I know it is a water diuresis; if it doesn't, I know that it is osmotic diuresis. I know I could get an idea by testing the specific gravity of my urine. I have done this in the past, but it's not something I want to be doing in the middle of the night when I am trying to sleep! It's a hassle at any time and involves additional exertion.
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
Good luck with the apnoea treatment. I would, however, be wary of 'sleep hygiene', for which I think evidence is generally poor, and which many - myself included - consider particularly unwise for people with ME. Our body clocks are out of sync due to factors which are inextricable from the underlying disease process - likely involving the HPA axis. This can't be reset through 'sleep hygiene', and IMO it is more important that people with ME do all they can to get enough sleep, at whatever time their bodies dictate.
I suppose I partly agree with 'sleep hygiene' my clock is now so sensitive that the clocks going back in a few weeks will take me 2 months to adjust - honestly...... same when summertime starts, - however its only the evening that I have to stick to a routine - my morning rise times vary depending on how I sleep/or not. So I guess its a case of what works for you.
Dr y-hill believes in early to bed for ME'ers - but 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
Is that because you snore?!!
I did mean to add to the above, that I am aware my weight has probably only compounded my own err 'volume' issues, but I have had them for so long with the ME diagnosis and a lot of that time I was skinny.
It's like sleep hygiene I guess. You can try it and see if it helps - same with trying to lose weight. I have and it hasn't. Although I am still too chunky for my own liking.
Hey-ho. Life ain't easy
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!
... And why don't we have an emoticon holding a big stick in a threatening matter, anyhow?
go away and leave me alone......
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