What has helped you with sleep/insomnia - post links

[Aspen]

My sleep improved almost immediately after eliminating foods that were triggering MCAS. I also have to pace well - I’ll lose 1-3 nights of sleep if I overdo things even a little. I took a food intolerance test, which I know now aren’t necessarily accurate, but it worked for me. I suspect that it may have come back with some false positives, but it only took about 3 days after cutting all 26 listed foods out of my diet that I started sleeping 7-10 hours a night. Prior to that I was sleeping max 4 hrs. I’ve challenged about a third of the foods on the list so far, and they’re all culprits. I will probably eventually challenge the rest of the foods, but right now I‘m just enjoying feeling better so I’m in no rush.

I still don’t feel refreshed after sleep, but it’s been a game-changer for me anyways. My quality of life, even as a bed-bound person, has dramatically improved. I also realized recently that I’m experiencing less brain fog, and I heard from Dr. Stein that brain fog improvements usually happen about 6 months after a physical improvement. Since I cleaned up my diet about 6 months ago, it seems to be another benefit of the diet/sleep changes.

 

[mattie]

Doxylamine succinate (Kirkland sleep aid for example) really helps, but tolerance develops quickly.
I go on and off it.
Sleep still not refreshing though.
Also not sure about long term safety of the stuff. Not much data available on this.
I usually take 12.5 mg (half a tablet)

Also tried diphenhydramine (Benadryl) but that only worked the first time.

Melatonin helps me fall asleep quicker.

Zolpidem helps a bit, but also no long term solution.
When I really "have" to sleep because of something I need to do next day. I'll take it.
Small dose only: 2.5 mg.

Insomnia is the worst part of this disease for me.

 

[Mary]

Hi @Mary -- I ordered some the day I saw your testimonial. Took one capsule last night, and my sleep was noticeably improved! Thanks for the suggestion! --

@Wayne - glad to hear it helped you! Though I'm guessing that eventually it stopped working for me several years ago which is why I had an extra bottle lying around.

@lenora - the same thing does happen to me as to you, I adapt to whatever I'm taking. But it's been over two weeks now and this is still helping some, so fingers crossed!

I think I'll try two tonight; maybe I'll sleep for a couple days and start making up for years of lost sleep???

If only!

@Wayne - I'm sure you've worked with box or 4-sided breathing - that's still helping me too (Box (4-sided) breathing: activate parasympathetic NS, lower BP, help with sleep | Phoenix Rising ME/CFS Forums
as well as grounding. It's finally getting warm enough to be able to sit outside for an hour or so with my feet on the ground - it's amazingly effective for sleep!

 

[lenora]

I am exactly the same only I take a quarter of clonazapn not Xanax. My problem is definitely my overactive brain, it just doesn't want to shut off and recently my sleep has been getting worse and worse, often not getting off to sleep till 2 am having finally given in and taken the quarter tab just before 1 am. I also take 25 mg Lyrica before I go to bed sometimes with GABA but often these don't work. I am going to have to try and take the Lyrica around 10 pm I think to see if that works better so I go to bed feeling sleepy.

Insomnia is a huge mental problem when one persistently tells oneself how important lots of sleep is and this is definitely the narrative these days. It adds hugely to the problem I find.

However I definitely can do so much more in the mornings when I have slept at least 6 hours but recently am struggling to get that amount of sleep. I think it must be an age thing because I am 73 in March and I have read that we don't make as much Melatonin as we age. However even 1/2 mg Melatonin can make me extremely dizzy which causes huge anxiety with no chance of sleeping! There was one article I found that Melatonin was counter indicated in elderly subjects with orthostatic intolerance which was interesting.

I do have combinations of "bad" SNPS to do with how the brain functions so maybe that is also playing a big part.

Pam

Hi @bertiedog.....Yes, Pam, insomnia is a big problem. I join you in saying that having a decent night's rest (at least 8 hrs.) is something we don't need the added pressure of. I just tell myself, that I'll do my best.

I've had an off-scale problem with insomnia for many years now. I couldn't even date it for you, but for the sake of being helpful, I know it has been at least 35 yrs. (Plus the years of having babies.)

Drugs work for a night, or better yet, once in a great while. Even if they do work, I'm usually up bright-eyed within 3 hrs. of falling asleep. All seem to have the same effect on me, thus I really don't use them any longer. I'll try a new suggestion now and again, but that's it.

Just do the best you can do....not sleeping isn't going to kill us. It just makes us feel out of step with the rest of the world. But then are they so very in-step? Far more people than we realize may now or in the future suffer from insomnia. I find that I actually look better if I don't sleep...at least I don't have bags under my eyes. All that sitting up, you know!

When you have children, you're sleep is disrupted from the moment they come home, then especially when they're teens and then having to get up super early to take them somewhere (in my case games and/or school). So a lot of us become almost programmed at that time in our lives. No, I could never sleep if mine weren't home and in bed. Their Dad passed out and left it up to me. I was perennially exhausted, but he did help take them to school and especially weekend games. So I was fortunate.

But those years left a mark on me, and I don't expect "normal sleep" to ever once again be a part of my vocabulary. So as much as people tell us not to worry, they also deliver the opposite message. Just do your best, Pam, and don't expect more of yourself than you can deliver. Yours, Lenora.

 

[lenora]

Doxylamine succinate (Kirkland sleep aid for example) really helps, but tolerance develops quickly.
I go on and off it.
Sleep still not refreshing though.
Also not sure about long term safety of the stuff. Not much data available on this.
I usually take 12.5 mg (half a tablet)

Also tried diphenhydramine (Benadryl) but that only worked the first time.

Melatonin helps me fall asleep quicker.

Zolpidem helps a bit, but also no long term solution.
When I really "have" to sleep because of something I need to do next day. I'll take it.
Small dose only: 2.5 mg.

Insomnia is the worst part of this disease for me.

Yes, @mattie, I think that's about right for a good many of us. Substances don't work for long and insomnia plagues us. In my case I can't sleep in or take a nap during the day. It does get worse with age only because we can't think as fast as we once did.

If you ever find a magic elixir, make certain to post it here. Wishing you some zzzz's. Yours, Lenora.

 

[lenora]

For the last 14months I have been on nytol or sominex every night.
Prior to this I never used any sleep drugs. After using amitryptyline for nerve pain in my heels I have not been able to sleep without any meds. During this time I have been wobbly, even when sitting. I have tried to ween myself off the meds, and the last 2 nights I have taken only melatonin, 5HTP and l trytophan, and the balance issues have become MUCH worse. I am struggling right now, even sat down. I feel as though I am about to fall over.

I really need to speak to a consultant who knows about chemicals in the brain and how they effect balance.

Anyone else have balance issues with long term use of sleep meds?

Hi @keenly......Yes, all drugs can have an unsteady effect on an overburdened body, most especially. May I suggest that you buy a walked for yourself? You need to be steadied somehow as I would hate to hear that you suffered a bad fall. I had problems with falling 10 times in no time at all due to weakness after coming off steroids. It's not a good feeling.

How about turning a light on, would that help during the night? If it isn't just at that time, then I would seriously consider buying a walker on wheels that has a built-in seating area at Walmart or the like. They're not horribly expensive and it's something we should all probably have somewhere in the garage. Or, the alternative may be asking around the neighborhood...someone may have one sitting unused at the present time. We do that in our neighborhood, share things, but we finally broke down and bought our own. Another good item is a chair to put in your shower or tub. Again, Walmart or any lg. retailer.

Also grab bars near the toilet....do you have them? I don't know about the UK, but here the firemen will come and install them...on off-times and you can either give them a donation, pay nothing or a fee...it's totally up to you. It's part of their community outreach program. I don't know how old you are, but any fall can be dangerous. I was just lucky with mine, except that I have non-stop soreness in an area of my back that was fine before. Be more proactive than I was. Stay upright....Yours, Lenora.

 

[Wishful]

I still don’t feel refreshed after sleep,

My guess is that even if you did manage to get 'perfect sleep', you'd still wake up feeling unrefreshed. I think ME gives us problems that feels similar to a lack of sleep, but is actually different and isn't affected by sleep.

 

[Tiger Lily 813]

Holy Basil, Olive Leaf Extract, Palo Santo oil (used topically)...

 

[lenora]

Holy Basil, Olive Leaf Extract, Palo Santo oil (used topically)...

Holy Basil, Olive Leaf Extract, Palo Santo oil (used topically)...

All ideas are welcome....I've tried the first two, but not the last. Thanks for the tip. Yours, Lenora

 

[lenora]

Hi @keenly......Yes, all drugs can have an unsteady effect on an overburdened body, most especially. May I suggest that you buy a walked for yourself? You need to be steadied somehow as I would hate to hear that you suffered a bad fall. I had problems with falling 10 times in no time at all due to weakness after coming off steroids. It's not a good feeling.

How about turning a light on, would that help during the night? If it isn't just at that time, then I would seriously consider buying a walker on wheels that has a built-in seating area at Walmart or the like. They're not horribly expensive and it's something we should all probably have somewhere in the garage. Or, the alternative may be asking around the neighborhood...someone may have one sitting unused at the present time. We do that in our neighborhood, share things, but we finally broke down and bought our own. Another good item is a chair to put in your shower or tub. Again, Walmart or any lg. retailer.

Also grab bars near the toilet....do you have them? I don't know about the UK, but here the firemen will come and install them...on off-times and you can either give them a donation, pay nothing or a fee...it's totally up to you. It's part of their community outreach program. I don't know how old you are, but any fall can be dangerous. I was just lucky with mine, except that I have non-stop soreness in an area of my back that was fine before. Be more proactive than I was. Stay upright....Yours, Lenora.

@keenly, Try using one or the other product once/mo., and see how that goes. It sounds like you were totally drugging yourself without realizing it. I take l/3 of a benadryl hard capsule and it will help me sleep. The next night...not likely. So one learns the best way to handle these matters. Wishing you well. Yours, Lenora.

 

[Jo86]

Anybody else have this ? - I've gotten used to sleeping late, so that's around 2am or later every night, that if I manage to sleep "early" one night, say 1am or 12:30, my body reacts and I'll surely 100% wake up in the middle of the night, then decide I absolutely must go back to sleep to get my hours, and tend to wake up and sleep again another time or more. Which makes my brain pretty smashed the next day, from waking up and going back to sleep again.

 

[lenora]

Well @Jo86, you're getting some zzzz...s, and I'm glad of that much. My sleep is so disrupted that I don't know if I'm an insomniac or a chronic complainer.

I find I feel better with less sleep (or at least I used to). Lately I've been totally exhausted, and feel better with even 2-3 hrs., even if it is broken up. I think for a good many of us insomnia is a fact of life...one we'd trade in a heartbeat - if we could.

I find l/4 capsule of Benadryl, for example will help me fall asleep and get a few more hours than larger amounts of the same drugs. I can expect that I'll then have RLS, will have to back off, but it's a help. It's a difficult game for so many of us....I wonder why? Yours, Lenora.

 

[YippeeKi YOW !!]

Hi @Jo86 ....

Some of us, myself included, have a paradoxical response to Bendaryl, and it's extremely unpleasant.

If that turns out to be the case for you, or anyone else reading these post, try Unisom, which unlike Benadryl, whose active ingredient is diphenhydramine, is powered by doxylamine succinate, and works, at least for me and quite a few others in these threads, like magic. I take 1/3 to 1/2 a 25 mg tablet and I'm out in 30 - 45 minutes, often for most of the night. Its been a godsend for those periods where I absolutely have to get get some sleep.

It also seems to have a much lower profile of side effects than Bendaryl, including next-day grogginess ....

 

[Rufous McKinney]

Older than 65 are advised to be careful about Benadryl....

https://www.verywellhealth.com/why-older-people-shouldnt-use-diphenhydramine-to-sleep-3015319

 

[YippeeKi YOW !!]

Pretty much everyone should approach diphenhydramine with caution .... nasty side-effects profile ...

 

[lenora]

Older than 65 are advised to be careful about Benadryl....

https://www.verywellhealth.com/why-older-people-shouldnt-use-diphenhydramine-to-sleep-3015319

That's very true, one of the reasons I can make a single capsule last 4 different times. I'm not as groggy and the falling risk is much less. Still, I rely on certain pieces of furniture to help me guide my way in the dark. I seldom use it anyway unless allergies are way beyond my control. Yours, Lenora.

 

[Jo86]

Hi @Jo86 ....

Some of us, myself included, have a paradoxical response to Bendaryl, and it's extremely unpleasant.

If that turns out to be the case for you, or anyone else reading these post, try Unisom, which unlike Benadryl, whose active ingredient is diphenhydramine, is powered by doxylamine succinate, and works, at least for me and quite a few others in these threads, like magic. I take 1/3 to 1/2 a 25 mg tablet and I'm out in 30 - 45 minutes, often for most of the night. Its been a godsend for those periods where I absolutely have to get get some sleep.

It also seems to have a much lower profile of side effects than Bendaryl, including next-day grogginess ....

thank you. If by paradoxical response you mean to include having nightmares, then I'm going to stay clear of bendaryl and try Unisom instead. I've been having these bizarre psychedelic nightmares with some sleeping aid with melatonin in it. Also the ambien I usually take has that effect. The grogginess is there anyways the next day, regardless of the substance I took the night prior.

 

[lenora]

HI @Jo86.....I think any of the sleeping aids are bound to have some side-effects. I know even melatonin gave me really bizarre dreams and stopped working, anyway. It's never a matter of relying on just one single thing...we seem to constantly have to try other substances. Surprisingly for me, the smaller the amount, the better I do. Also, I take mg. at night and that seems to help with relaxation. Probably 1 hr. or more before you want to go to sleep.

Right now and for the immediate past, Benadryl has seemed to work very well. I get the whole capsule, not time-release and will take small amounts of it...right now it's helping with both allergies and sleep. Of course allergies can exhaust you too, but it doesn't mean that sleep with follow.

I feel sorry for anyone with sleep problems, as our days are long enough as it is. I just know that almost everything has been tried in my case, both vitamins, supplements, herbs and meds and nothing is "The Answer." If I fall into a light sleep the bizarre dreams are more likely to occur. So, knowing that, if I get 3-4 good hours I'll often stay awake instead of having that groggy feeling the next day. If you find any help, please let us know. Sweet dreams.....Yours, Lenora.

 

[YippeeKi YOW !!]

If by paradoxical response you mean to include having nightmares

Nightmares might have been welcome, since the main reactions I had were intractable insomnia, jittery, jerky nerves, heart palps, strobby eyes ...

Paradoxical effects are different for all of us ....

 

[Jo86]

there's just one more thing I'll add here, maybe someone identifies:
for years, I developed this habit, every single day, to eat late at night. The infamous midnight snack. Only for me it was rather small meals, than snacks really. After the ambien would take effect, I have this urge to give my body some sort of physical stimulation. It was cigarettes before (twice as "enjoyable" while on ambien) but I quit, and most of the time, it was food. I've stopped having any meals at night past 7pm now as I'm on this 18-6 split (intermittent fasting, look it up, very easy to grasp, no long paragraphs of reading needed). And the nightmares have at least subsided.

So the point of this message: as obvious as it may be to some, don't eat past a certain hour, right before bed, the gut and body work hard to process the food, yadi yada.