Sleep difficulties

lenora

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THE FIRST FOUR POSTS IN THIS THREAD WERE OFF-TOPIC AND MOVED HERE FROM THE THREAD Signs of Intracranial Hypertension, Hypermobility, and Craniocervical Obstructions in Patients With ME/CFS

Good Morning....@Pyrrhus, thanks for always pulling an answer for problems out of your hat; and @Wishful, as you can see, I share your insomnia problems. (& have since pre-diagnosis of about 35 years ago). No, nothing works although my ever diligent neurologist is trying me on something new tomorrow. Sorry, I don't have the name as my husband thinks it's one name and I, of course, another. So we'll be surprised!

What causes the sleep problems in not just ME, but in so many neurological conditions? I used to sleep well when a child, an adolescent and a young woman. It wasn't until my first daughter was born when I was 25, that everything more or less changed. I think any mother would tell you the same thing happens to her....except that in my case, it just continued getting worse over the years. It became an out of control spiral not unlike Alice falling down the rabbit hole. Everything was tried on me, and nothing helped.

I had a pretty good thing going whereby I would read until approx. 2-3:00 a.m., sleep for 4 hours and that would be it for the day. Since April, I don't/can't sleep. I'll be really lucky if I get 2 hours/day. The "child" thing leads me to believe that a large part of it is perhaps hormonal or even more likely, damage to the sleep center of the brain from the contractions and pushing of childbirth. (Unknown hydrocephalus?) Whatever, nothing has changed in all those years. I did have a couple of neurological conditions and later had brain surgery.

While it helped many things, my sleep was even worse than ever. I'll say that the short-acting anesthetics seem to make it worse each time I have surgery. The same, as would be expected, with steroids. However, they're often medically needed, so do listen to your doctor concerning that particular problem. No, the usual sleep drops do absolutely nothing for me after the first day or two.

I'll try this one new medication b/c it works in a different way on the brain. If it doesn't do the job, then that's it again. I expect now to be awake for part of the night, thus I don't get frustrated the way I used to. I know I'm not the only one on this forum who suffers in this way. Sleep is natural to us but the lack of it is simply one more thing that we lack. I'm in marvel of people (I watch my husband) who can fall off to sleep simply by closing their eyes. It's a wonderful gift and if you have it treasure it....always. Yours, Lenora.
 
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Wishful

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@Wishful, as you can see, I share your insomnia problems.
My sleep problems just got worse. I had been waking every 90 minutes, and then usually falling asleep again. The past two nights, it's been every 45 minutes. Last night I woke up for the nth time, thinking "after all those wakings, it must be nearly 6 AM". It was 1 AM. Sooo disappointing. :(

Back to experimenting to try to figure out what's causing the newest frequent wakings.
 

ljimbo423

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My sleep problems just got worse. I had been waking every 90 minutes, and then usually falling asleep again. The past two nights, it's been every 45 minutes. Last night I woke up for the nth time, thinking "after all those wakings, it must be nearly 6 AM". It was 1 AM. Sooo disappointing. :(

Back to experimenting to try to figure out what's causing the newest frequent wakings.
I just found out in the last couple of weeks that vitamin b1 is preventing insomnia. I Stopped taking one of my vitamins that had 38 mg of b1 in it. My sleep went from very good to chronic insomnia very quickly.

I just started the b1 again a few days ago and my insomnia immediately improved and now it's about 95% gone. As you know this might be unique to me but I thought I'd let you know.

I don't know how it's working but it might be from affecting activated microglia. Benfotiamine is a form of b1.

Therefore, benfotiamine may have therapeutic potential for neurodegenerative diseases by inhibiting inflammatory mediators and enhancing anti-inflammatory factor production in activated microglia.
Reference
 
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lenora

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Wishful....Hello. You may be like me. I find that every 3 wks. or thereabouts, I have periods of extreme wakefulness. That means absolutely no sleep for the entire night and I have to say that I feel better during those times. Others have commented on the exact same feeling.

On the nights when I do sleep, I feel really rotten the next day...like my body's in reverse. I would prefer to read for hours on end and then fall asleep for 4 hrs., and then up for the day. I don't work, so don't have that to worry about. I don't know what I'd do if I did. I even look worse when I sleep....like I'm groggy and can't snap out of it. Yes, I will literally just pass out when exhausted enough after I've gone for nights without sleep. It's a mighty long day, as you know, but I now find enough to keep me busy that time almost means nothing to me. It's time...that's all. Although I must admit that I can't do anything after 4:00 p.m., am in the bedroom my about 5:00 p.m. and that's it for the day. Funny thing is that my husband's exactly the same way. We do start the day early...and I never used to be that way.

Both of our daughters sleep well, thank goodness, as does my husband. He doesn't hear anything...I'm the nightly watchout it would seem. I can't read sitting in a chair for some odd reason, but do have plenty of other matters to attend to. They're just put in a pile until my next big "can't sleep" event. You should see what happens when I travel (or used to). Talk about a bodily mess! No, sleep clinics have never been able to help me, they're often as confused as I used to be. Trazodone is the drug of choice for all sleep conditions by all of them. And no, it does nothing for me. I hope you do track down what your problem is....it's certainly not much fun, is it? Oh, one thing I did notice: If given a choice I could probably sleep from 4:00 a.m. until 10:00 a.m. I haven't tried that for years now, but it was a "Once upon time" thing. Yours, Lenora.
 

Wishful

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I have periods of extreme wakefulness.
It's not common for me, but that does happen. Last week I had a craving for cookie dough, so I made a small amount, just 2 tsp of flour, maybe a tsp of sugar, plus oil, and vanilla. It was enough to satisfy the craving. I had it around 10 AM because that early shouldn't affect my sleep. I lay in bed wide awake from 9 PM to somewhere around 2 AM.

I'm torn between wanting to test some other sugary treat at 10 AM to see if it's repeatable, and simply not wanting to go through that again. :nervous:

BTW, I was back to waking only every 90 minutes or so last night. :thumbsup:
 

lenora

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Hello @Wishful. No, I wouldn't think that sugar would be the thing to have close to bedtime. It apparently really winds some people up.

I've taken to having a warm cup of almond milk with vanilla and about 3 packets of Stevia (herbal sweetener). I dislike milk like you wouldn't believe, but also realize that you have to get calcium somehow. Anyway, the almond milk doesn't bother me, I put in a lot of vanilla and warm it up for about 1 minute or more, depending upon how large your mug is. Put Stevia in after heating. Very low calorie...just make sure to shake very well as the calcium sits at the bottom. So that's one plus. And then I seldom have anything else in the evening. It may help you relax.

I'm sitting here yawning away now. Everything hurts or I'd be in bed now. Must make the effort to do just that.
I was going to try a new med, but my husband tells me it's $350/mo. Scratch that as it probably won't work anyway. That's insanity....no wonder my doctor wanted to find some samples for me. It does work on the brain in a different way, but I'm not spending that kind of money on it. No, won't do it.
 

Wishful

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No, I wouldn't think that sugar would be the thing to have close to bedtime.
That's why I avoid sugar or refined starches past 2 PM. 10 AM is about 12 hrs from my bedtime, which is why I thought it would be safe. Nope. :wide-eyed::wide-eyed::wide-eyed:

Oddly, hot chocolate before bedtime doesn't bother me, and that probably has as much sugar as was in my bit of cookie dough. The total amount of simple carbs was probably higher though. Tricky.
 

Wishful

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Update: for some reason, I've lost the waking every 45 or 90 minutes. I've been waking every ~3hrs instead. Much better! No really obvious trigger for the change. I did try some soy butter. I also restarted doing arm exercises on my walks. Maybe working those shoulder muscles affects the upper spine? I haven't noticed any spinal problems, but if that's a sensitive area, maybe increase blood flow or whatever is having a positive effect.

... or maybe vampire dust bunnies are drinking my blood when I sleep, and their saliva keeps me sleeping longer. All sorts of possible explanations. :)
 

Wolfcub

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I just found out in the last couple of weeks that vitamin b1 is preventing insomnia. I Stopped taking one of my vitamins that had 38 mg of b1 in it. My sleep went from very good to chronic insomnia very quickly.

I just started the b1 again a few days ago and my insomnia immediately improved and now it's about 95% gone. As you know this might be unique to me but I thought I'd let you know.
Thanks for that tip @ljimbo423 :thumbsup: I might give that a try myself. I have started waking up at stupid o' clock a few times in the night and then waking up finally, too early.
It's been coming on for a few weeks on and off, but worse in the last week, especially since some very early starts (tradesman possibly coming round early a.m.) Since then I haven't been able to get back on track.
 

ljimbo423

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Thanks for that tip @ljimbo423 :thumbsup: I might give that a try myself.
I forgot to mention that vitamin B-1 increases my energy for a few hours after I take it. So I take it during the day, never at night.

Ironically, if I don't take it, I get really bad insomnia, even though it gives me a very noticeable energy boost for a few hours during the day.
 

Wolfcub

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I forgot to mention that vitamin B-1 increases my energy for a few hours after I take it. So I take it during the day, never at night.
Right, thanks Jim.
A friend also recommended B1 to me recently for stress intolerance. I read that the RDA is 1.1mg (for female adults)....what?? And I was thinking....I have that in my multivitamin-mineral complex daily, plus the B1 in lots of foods I eat, so always imagined I was getting enough.
 

Wolfcub

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I always got 8 hours straight sleep, even when I started with ME/CFS. My history was that I always felt well on 8hrs, and even better when I got 9!
When ME/CFS kicked in I got a peculiar reversal happening (similar to what you mentioned @lenora ) where I would often feel better....absence of symptoms....from sleep deprivation. It baffled me but seemed to come up with consistent results,
Couldn't exactly keep that up obviously, and could tell anyway that whatever way I looked at it, the body definitely needed sleep.

In the first and second years of illness, a natural pattern of mainly 8hrs sleep set in and was regular. I had no complaints about sleep quality, except for occasional inability to fall asleep at night, but I made up for it by waking up later (naturally.)

But earlier last year I found I was waking after 7 hours. And not feeling so good on it. but okay once I got going in the morning/day. But especially over this winter it's reduced even more to 6+1/2 at best, usually 6.
When that started happening I felt no worse at all, but it's started dragging on me, and I am beginning to feel the sleep debt....and can't seem to be able to change it.
I fall asleep as soon as my head hits the pillow but wake in the dark. I have tried to make the best of it by getting up, going downstairs, listening to morning music, lighting a log fire....etc.
 

lenora

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Hello @Wolfcub....Yes, it does take time to adjust to this new thing in our lives.

Like I've said before, now time doesn't mean anything to me and sometimes I'll even pass out with a cup of tea in my hands (the rug beneath me can confirm it). Now that's something you could try...I don't know about you, but my hands are often freezing and perhaps it's the warmth of wrapping our hands around something warm that let's something in our sleep deprived dreams go.

I've been suspicious of the fatigue and amount of sleep (a lot) I've been getting lately. All you have to do is become anemic...easy answer to that problem, isn't it? Well, I'll build myself back up and my neurologist has given me some samples of a new sleep drug that is supposed to enter the brain via a different route. I'll let you know when I get out of the state I'm presently in. I'm sleeping hours and hours at the moment, and my fatigue levels are through the roof. You'd think I'd recognize the symptoms, b/c I've been there before.

Are you able to go for your walks again? I haven't been able to get out for mos. now, and I really miss them. (Knee problems.) They're about the easiest way I know of for us to get easy exercise that benefits the entire body. I hope you'll soon be able to get immunized before you get the new strains. Yours, Penny
 

lenora

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@ljimbo423....Good morning. And I gather it is good with your new sleeping help.

Would you mind telling us the amount of B1 you're taking? It would be helpful and I'm sure the @Wolfcub is as interested as I am. Sleeping meds have never been the answer for me. I'll pass out for perhaps 2 hrs., and then the med won't even work the 2nd night. I gave up on them years ago, although my neurologist has a new one that accesses the brain in a different way. I'll try them another time. I have 3 nights' samples. He's a good man and does try, plus he understands the illness as much as anyone can, that is. Kindness is all.

Still, if I can do it in a natural, beneficial way I'd rather do that. It's a simple enough cure, isn't it? So many of us have sleep problems, I hope others see your answer. Thanks, Jim. Yours, Lenora.
 

Wolfcub

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I've been suspicious of the fatigue and amount of sleep (a lot) I've been getting lately. All you have to do is become anemic...easy answer to that problem, isn't it? Well, I'll build myself back up and my neurologist has given me some samples of a new sleep drug that is supposed to enter the brain via a different route. I'll let you know when I get out of the state I'm presently in. I'm sleeping hours and hours at the moment, and my fatigue levels are through the roof. You'd think I'd recognize the symptoms, b/c I've been there before.
Is it the anemia which is making you sleep @lenora Or the samples of that drug the neurologist gave you? If it's the drug, could that be side effects? I wonder if some of the horrible fatigue might pass as you make up some of your sleep debt?
I know we can often feel a bit better when running on reserves, but being "knocked out" by something ....well, the boy has to adjust.
I might be wrong with all the above.
Are you able to go for your walks again? I haven't been able to get out for mos. now, and I really miss them. (Knee problems.) They're about the easiest way I know of for us to get easy exercise that benefits the entire body. I hope you'll soon be able to get immunized before you get the new strains. Yours, Penny
I am able to go for a walk most days but have to be careful. A few days ago I felt much better, so walked too far and crashed for a day or two. Then started to feel better....today there was snow and beautiful skies. I just had to walk in it. Tonight I feel off again! My own fault, I know.
England already has the new mutations of that virus and has had them since late 2020. It's confusing. Nobody knows what to expect now, as apparently new versions of it don't always come with the same symptoms (no fever, for instance.) It'll be late summer before ordinary people get vaccinated anyway, and I am dubious about how long immunity would last from it.
 

ljimbo423

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@ljimbo423....Good morning. And I gather it is good with your new sleeping help.

Would you mind telling us the amount of B1 you're taking? It would be helpful and I'm sure the @Wolfcub is as interested as I am.
Hi Lenora. Yes, my sleeping is sooooo much better!

I'm glad you asked about how much b1 I'm taking. I found that 38 mg wasn't enough to help very much, if at all with my insomnia. So I increased that to about 75 mg total and that makes a huge difference in how well I sleep. I originally stumbled on the B1 helping my insomnia by accident.

I bought a good multivitamin that happen to have 75 mg of B1 in it, years ago. I never made the connection to it relieving my insomnia though. Until I stopped taking the multivitamin, got insomnia, then started the B1 again and my insomnia was gone again.

I'm going to slowly increase it even further to see if I can sleep even better. I would suggest to anyone trying B1 to help with insomnia, to take it during the day, not at night, to see if it increases your energy, like it does mine. But it helps me sleep so much better at night, even though it increases my energy during the day.