• 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 (FM), 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.

Sleep, what finally helped

Lou

Senior Member
Messages
582
Location
southeast US
I hardly slept for years after I got ME. You know the story, lay down dead tired but wide awake, finally drift off only to wake again in a couple of hours. Then, the long wait for dawn.

Immunepro, a superior form of whey protein, greatly helped. Taken in a couple ounces of water just before bed usually gets me to sleep and keeps me there much longer than before. It you try it you should know it can be a pain to mix. Use something like a tall bottle, pour in small amount of water FIRST, then a scoop or two of Immunepro, and swoop it around in the container like a little tornado. Or, I guess you could use a mixer.

The other thing you might try, is Osteo-Strontium Complex(not to be confused with strontium 90 isotope, that's a whole different way of putting yourself to sleep) by Nutricology and in the powder form(the tablets didn't work for me at all). Again, I took it just before bed.

Hope this helps some of you. Not sleeping is its own nightmare.
 

soxfan

Senior Member
Messages
995
Location
North Carolina
Where can I find Immunepro? I am willing to try just about anything as long as it isn't through prescription. I really am aiming to do this with herbal or other supplements. Thanks again...

My worse problem is unrefreshing sleep even though the lunesta knocks me out. The other problem is either I don't sleep even though I took a lunesta which makes me feel so much worse the next day or taking too much stuff and having a terrible hangover the next day. I can't seem to find a solution to this...
 

Lou

Senior Member
Messages
582
Location
southeast US
Drugs? Really? My experience was they either didn't work, work only a short duration, worked somewhat but with side effects, or worked but turned you into a zoombie next morning.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Lou, glad the Immunopro worked for you!

I wonder if It fits in with the other milky drinks that some people take before bed to help them sleep? Sadly, Immunopro didn't work for me. Even a small amount made my viral symptoms much worse and over time my health really did deteriorate, didn't help sleep at all. A real pity as a nice simple way to get to sleep would be great.

Hope it continues to work for you.
 

Lou

Senior Member
Messages
582
Location
southeast US
Man, that sucks. You know, ukxmrv, that's why I was a little reluctant to post some of my own remedies, that just as in your case what may work for me, may actually cause harm to someone else. This is some strange illness. Hope you find something that helps.
 

aquariusgirl

Senior Member
Messages
1,732
I hear you Lou. this illness is a mine field and you don't want to steer someone wrong.
I tried it, can't remember if it helped, but gave up when I read that it could cause excitotoxicity.
The reason I stay away from it now is that I came up positive for casein intolerance (casein..dairy..etc.)
Just fyi.
 

Lou

Senior Member
Messages
582
Location
southeast US
Just to add another layer of strangeness to our varying symtoms, aquariusgirl, the excitotoxicity, if I understand it correctly, is exactly what the Immunepro addressed in my case. Go figure.
 
Messages
15,786
Just to add another layer of strangeness to our varying symtoms, aquariusgirl, the excitotoxicity, if I understand it correctly, is exactly what the Immunepro addressed in my case. Go figure.

Whey protein has cysteine in it, which is probably what our bodies are ultimately lacking. With enough cysteine, your body can form some more glutathione, thereby using up some of the extra glutamate (another component of glutathione) that's trying to fry your brain when you just want to sleep.
 

Lou

Senior Member
Messages
582
Location
southeast US
Whey protein has cysteine in it, which is probably what our bodies are ultimately lacking. With enough cysteine, your body can form some more glutathione, thereby using up some of the extra glutamate (another component of glutathione) that's trying to fry your brain when you just want to sleep.

That's insightful, Valentijn, thanks. Your description of the excess glutamate problem is perfect.
 

SOC

Senior Member
Messages
7,849
So I should be taking my whey protein drink at night instead of in the morning?

Geez, minefield is right. Just when you think you've got something figured out....
 
Messages
15,786
So I should be taking my whey protein drink at night instead of in the morning?
Geez, minefield is right. Just when you think you've got something figured out....

I doubt taking cysteine in any form is going to make you sleepy, and I have absolutely no idea how fast anything is getting absorbed by the body. But getting glutamate levels lowered somewhat could help with a lot of neurological problems, including trouble falling asleep and waking up a lot.
 

SOC

Senior Member
Messages
7,849
I doubt taking cysteine in any form is going to make you sleepy, and I have absolutely no idea how fast anything is getting absorbed by the body. But getting glutamate levels lowered somewhat could help with a lot of neurological problems, including trouble falling asleep and waking up a lot.

Whew! It's hard enough keeping up with all the routines we have to make to manage life. I didn't really want to have to figure out how to adjust my food schedule.