• Welcome to Phoenix Rising!

    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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

What has helped you with sleep/insomnia - post links

lenora

Senior Member
Messages
4,928
Hi @GreenMachineX .........No, GHB didn't work at all. Apparently there was a time when they were hoping to use this for severe insomniacs. I was in a trial....and it was a dismal failure. Yours, Lenora.
 

GreenMachineX

Senior Member
Messages
362
I've noticed 2 things for my sleep.

I must eat eggs every day (guessing it's choline?).
And GABA is terrible for my sleep when I've taken it during the day. I urgent taken it pre-bedtime, but if taken at 12pm or 5pm, I feel awful about 6 hours later.
 

Husband of

Senior Member
Messages
318
My wife has had successful sleep using tart cherry juice 3/3 times, as in reasonably ok getting to sleep, sleep long and uninterrupted, or being able to get back to sleep quickly after interruption.
This is more like 4/6 now. The two failures weren't complete failures though, as they still helped provide a lengthy sleep, by there was difficulty getting to sleep
 

lenora

Senior Member
Messages
4,928
HI @Husbandof.....I don't know if I've suggested this before, but has your wife tried the soft foam purple earplugs (purple b/c they're smaller. For me, some are too big). It's true that they do take getting used to, probably 10+ days or more, but they do block sounds that may be interfering with her sleep.

I have and have had terrible insomnia for approx. 35 years, any noises would prevent falling asleep and finally these worked. True, I'm not a good sleeper now, have accepted that I never will be and find plenty to do during those hours when I'm awake. It takes me an hour or more to fall asleep. I try to stick to a schedule, make myself. I hope she'll have some good fortune with them. Yours, Lenora.
 

Wishful

Senior Member
Messages
5,764
Location
Alberta
I recently tried butter again for the first time in several years (it made my symptoms worse before). I needed it to test whether butyrate was the factor for why fibre was giving me problems. No symptom increase, but instead of waking 5 or more times during the night, I only woke twice. I assume that's due to the CLA (conjugated linoleic acid) content. Good stuff! Tastes good too.
 
Messages
24
I have a previous post on here somewhere. After getting an email of this thread, I have some new things to add to it that I didn't know about back then.

If I didn't mention adrenal cortex (NOT glandular but cortex), that was helping me when I suffered from low cortisol issues.

Then I discovered pregnenolone, and that helped me and felt better than cortex, because it was assisting all the other hormones too. But this also showed me I had all-around hormone issues.

Now, copper sulfate liquid is helping me and I've decreased intake of almost all other sleep supplements (except NAC, olive leaf and tyrosine/mucuna for dopamine, and SAM-e for good measure for methylation). I'm following the info from Jason Hommel of revealingfraud.com / the Copper Revolution FB group. My copper levels have been below range since 2020 and this liquid finally seems to be helping. I believe it's also assisting hormones, as cortisol might have a copper enzyme in its pathway. I'm starting to have full nights of sleep for the first time in three years with every little support outside copper. Just need to balance it with some zinc picolinate sometimes.

Liquid copper sulfate tastes disgusting to me, so I take it in clear capsules and drink it with milk, which dependably wards off any nausea. Currently testing 20mg per day, aiming for 30mg at least for a little while.
 

Wishful

Senior Member
Messages
5,764
Location
Alberta
Liquid copper sulfate tastes disgusting to me,

Does it have to be sulphate? Does whatever mechanism involved depend on the sulfur atom? If not, there are other forms of copper. All will taste awful, I expect, but maybe one will have fewer unpleasant effects.

When I needed to see whether copper supplementation would have an effect on me, I stuck a bit of copper wire in vinegar, to make copper acetate. Works well as a topical antifungal too, if you don't mind having green skin for a while. :alien:
 

lenora

Senior Member
Messages
4,928
Hi @MonkeyMan......do you live in a hot climate I?'m in TX so that really matters to me.

Also, where did you buy your organic wood mattress toppers from? Do they wrinkle much? Sorry that I have so many questions.....but! Yours, Lenora
 

Anchoress

Senior Member
Messages
1,063
very interesting and learned thread indeed.... and far from my own simple measures. when I was finally diagnosed with CFS/ME after 30 years of misdiagnosis and psych drugs, I spent a hidden year getting myself off all meds . Needed to see where I was at. Now, another 20 years on, my access to medical care etc is very limited and basic.(small offshore Irish island) I have severe Raynauds along with the M.E so get Tylex prescribed ( codeine based) and allergies. So I take Tylex at night to deal with the pain, which makes me sleepy and kills the appalling foot pain...and an antihistamine. And sleep is good. And dependable. My attitude to sleep changed also. While i have ( aged 80) no commitments and no family responsibilities, sleep is totally vital for sanity. and this combination works for me dependably. My attitude changed and I relaxed about it when I was finally getting enough sleep to cope. If i get a less helpful night I knit abed or something simple
 

MonkeyMan

Senior Member
Messages
405
Hi @MonkeyMan......do you live in a hot climate I?'m in TX so that really matters to me.

Also, where did you buy your organic wood mattress toppers from? Do they wrinkle much? Sorry that I have so many questions.....but! Yours, Lenora
Hi Lenora, I live in the northeast. Just click on the link to see where I bought the toppers. No wrinkles so far.
 

lenora

Senior Member
Messages
4,928
Thanks! We have adjustable twin xl (makes a king bed to look at them), so I hope this will work. I'm getting weary of trying to find the "right" mattress and topper.
 

Wayne

Senior Member
Messages
4,315
Location
Ashland, Oregon
Ran across this testimonial on the Ray Peat forum:

"After retiring from being a "nightclub singer" most of my adult life and getting to bed at 2:30 - 3:00 AM I spent a decade of trying to learn how to get to sleep. I have found a few things that really do help me (instead of too much alcohol). Taurine is great, in fact I take magnesium taurate almost every night, milk thistle seems to help, 2 drops of Progest-E will really knock me out and CDB/hemp gummies make me sleep through the night."​
 

Judee

Psalm 46:1-3
Messages
4,503
Location
Great Lakes
This is more like 4/6 now. The two failures weren't complete failures though, as they still helped provide a lengthy sleep, by there was difficulty getting to sleep
I still gotta read this whole thread so maybe someone already said something like this but I'm back to using a teaspoon of my sweet cherry concentrate before bed. (Tart cherry sometimes upsets my stomach.) However, like you said, I still need something to help me fall asleep and for that I use 1/4 of a children's chewable Benedryl.

(It has dyes which I shouldn't have but I don't do well with the liquid and it's propylene glycol and the adult dye free doesn't seem to work as well at all in the same amounts. My Mom used to ask me why the children's acetaminophen seemed to work better than the adult kind too. Idk. It just seems to...maybe because it gets in the system faster being chewable. ??) Saying all that to say if someone has MCAS they probably shouldn't use the kind with dyes.

The other thing that I sometimes take a is pinch of Swanson's Sleep Essentials but that's a mishmash of stuff and I don't really like taking it because it's too hard to check interactions with Rx meds. Plus, the GABA in it does something weird to my muscles but it does help me fall asleep. ??
 

Husband of

Senior Member
Messages
318
I still gotta read this whole thread so maybe someone already said something like this but I'm back to using a teaspoon of my sweet cherry concentrate before bed. (Tart cherry sometimes upsets my stomach.) However, like you said, I still need something to help me fall asleep and for that I use 1/4 of a children's chewable Benedryl.

(It has dyes which I shouldn't have but I don't do well with the liquid and it's propylene glycol and the adult dye free doesn't seem to work as well at all in the same amounts. My Mom used to ask me why the children's acetaminophen seemed to work better than the adult kind too. Idk. It just seems to...maybe because it gets in the system faster being chewable. ??) Saying all that to say if someone has MCAS they probably shouldn't use the kind with dyes.

The other thing that I sometimes take a is pinch of Swanson's Sleep Essentials but that's a mishmash of stuff and I don't really like taking it because it's too hard to check interactions with Rx meds. Plus, the GABA in it does something weird to my muscles but it does help me fall asleep. ??
My wife found alternating between tart cherry and meletonin helpful, but didn't always work. Sometimes we'd give her valerian root too.

Now she just take mirtazapine which is far more effective
 

JasonPerth

Senior Member
Messages
126
Nothing has helped me- changing room environments helped a little bit. I was scared of becoming bedridden so i would sleep on the couch instead infront of my 82inch tv with youtube. So that probably didnt help.
But honestly, since becoming Moderate/Severe and “Tired but Wired” nothings helped. I would sometimes sleep on the couch as normal when my CFS was mild 2016-2022. Is it normal to only get MCAS, POTS, Insomnia issues when going Moderate or Worse? I guess so, if mild feels like a 6/10 - moderate to me feels like a 1/10… and with the 5 points drop. Every symptom is 5 times more and new ones appear that i just never had before. Like insomnia / struggle to sleep before 1-2am and if i do manage to sleep before 11 somehow, i will no doubt wake up 2-3 hours later.
 
Messages
9
I'm trying to understand my own manifestation of CFS, because sometimes I feel like it diverges from the common experience. Unless something is really bothering me, I almost never experience large interruptions in my sleep cycle and only occasionally take too long to fall asleep. I frequently obtain 10+ hours straight of sleep per day. I can't even take medication with drowsiness as a side effect because it robs me of the ability to function properly. I have yet to find a medication that really reduces drowsiness, fatigue, or need for prolonged sleep. I took modafinil for a short time in the hopes of staying more alert, but it had almost no effect on me.
 

MonkeyMan

Senior Member
Messages
405
Here's a protocol I've developed that allows me to sleep like a baby after years of insomnia:
  1. This stuff (2 capsules every evening, an hour before bed) - helps me sleep better than anything I've ever tried.
  2. Taking a Claritin every day at 5pm.
  3. Avoiding blue light (limiting my cell phone and laptop usage, and using them with minimal brightness), especially in the second half of the day.
  4. Not exercising or working or exposing myself to any other physical or mental stresses after 6pm.
  5. Taking a warm, 10-minute shower an hour before bed, then listening to soothing music in my living room, with all the lights off, for about 45 minutes.
  6. Going to bed at the same time every night, with earplugs, noise cancelling headphones, and an eye-mask to block out light.
  7. Installing several mattress toppers over my mattress, to make the bed super-comfy.
  8. Setting the bedroom temperature to a COOL 68 degrees F or less, and sleeping in ultra-cool, breathable bamboo pajamas. :)
 
Last edited: