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    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.

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What has helped more with your sleep?

Beyond

Juice Me Up, Scotty!!!
Messages
1,122
Location
Murcia, Spain
I have very high blood cortisol and extremely low saliva cortisol 24 h. Urine is low as well, actually. No one has reported something like this ever in any health forum that I have read (and I have read a bunch!!). What this means I dont know, but one thing is sure, my adrenals are pretty dysfunctional one way or another. I THINK I have very low FREE cortisol, and the blood one which is not free but bound looks abundant for some odd reason.

LoL is funny because the allopaths do the blood tests and the alternative docs etc make the saliva one so for the official doctors I have hypercortisolemia which matchs my social anxiety and depression, however for the others I am severely adrenally fatigued. Adrenal nutrients and adaptogens never did much for me, although nutrients did something for energy and mood, i.e. Vitamin C, Panthetine and an active B Complex. Good stuff I´d say but didn´t help sleep one bit.

I will test a few days each supp. That way I´ll see if something does anything!
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
I have very high blood cortisol and extremely low saliva cortisol 24 h. Urine is low as well, actually. No one has reported something like this ever in any health forum that I have read (and I have read a bunch!!). What this means I dont know, but one thing is sure, my adrenals are pretty dysfunctional one way or another. I THINK I have very low FREE cortisol, and the blood one which is not free but bound looks abundant for some odd reason.

LoL is funny because the allopaths do the blood tests and the alternative docs etc make the saliva one so for the official doctors I have hypercortisolemia which matchs my social anxiety and depression, however for the others I am severely adrenally fatigued. Adrenal nutrients and adaptogens never did much for me, although nutrients did something for energy and mood, i.e. Vitamin C, Panthetine and an active B Complex. Good stuff I´d say but didn´t help sleep one bit.

I will test a few days each supp. That way I´ll see if something does anything!

The differences could be partly due to diurnal variations. Did you have both tests at the same time of day?

Supplements can take more than a few days to show effects. For example, 5-HTP took 2 weeks to improve my mood.
 

Beyond

Juice Me Up, Scotty!!!
Messages
1,122
Location
Murcia, Spain
The differences could be partly due to diurnal variations. Did you have both tests at the same time of day?

Supplements can take more than a few days to show effects. For example, 5-HTP took 2 weeks to improve my mood.
Yeah. Saliva was taken at morning,afternoon, evening, night. Blood always mornings. There is some mystery here for the health-concious-hormone-wise, but I wish I wasnt the case to study.

Correct re supps taking time sometimes. Hopefully I will be able to distinguish effects of things some way. My hope was swallowing a bunch of pills with some grams of inhibitory aminoacids and wait of the slightest improvement. ;)
 

Beyond

Juice Me Up, Scotty!!!
Messages
1,122
Location
Murcia, Spain
http://jn.nutrition.org/content/111/1/166.full.pdf

http://www.sciencemag.org/content/202/4364/223.short

http://www.sciencedirect.com/science/article/pii/S0140673677900678

There ya go... The clinical-trial ninja strikes again! :ninja::nerd: I hope you dont mind "rat studies". They arent as good as human´s but lets assume choline also increases acetylcholine in humans :D

Acetylcholine is just ONE of a couple of neuros which are involved in sleep, but it is nice to know we can hack it just taking lecithin granules every morning.
 

belize44

Senior Member
Messages
1,664
I have started taking GABA before bed, and am finding that I am able to sleep very well at last. I still have that 5 or 6 hour waking part, but am usually able to resume sleeping. I don't seem to need the Melatonin because it actually did not help me sleep at all although it has, in the past. Sometimes I still add two capsules of Valerian to stop the racing thoughts. I am eagerly awaiting the results of my saliva testing because I have long suspected a cortisol issue.
 

Beyond

Juice Me Up, Scotty!!!
Messages
1,122
Location
Murcia, Spain
So what brand and dosage belize? I´ve been reading on oral GABA for a while now, with conflicting info, but a majority of positive feedback.
 
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belize44

Senior Member
Messages
1,664
I take a 750 mg tablet, and the brand is made by The Vitamin Shoppe, (that's the correct spelling btw) which has an online store. I was a little leery about buying a "house" brand but this seems to be a good quality tablet. All you can do is give it try and see if it helps! With the GABA, I was also able to wean off of Benzos with hardly any drama.
 

Beyond

Juice Me Up, Scotty!!!
Messages
1,122
Location
Murcia, Spain
Have you read the stuff here about GABA?
Looks like science based skepticism regarding GABA supplementation for sleep. However lots of people report neurological effects from it (like enhanced lucid dreaming in the homonyme forums). It is hypothetized by some that maybe GABA turns into something that does cross the blood brain barrier at high doses. I want to try it to see how it affects sleep quality, 3 or 5 grams.

Maybe is the HGH stimulating effect what people feel from GABA...
 

Sing

Senior Member
Messages
1,782
Location
New England
I wonder if the OTC Gaba works the same as a prescription med like Gabapentin? The latter is one of the chief meds I've read that has been found useful for ME/CFS, both sleep and pain. If the OTC Gaba works as well, why pay for the script.

The thing about the adrenal glands that many overlook is that they take these glands take their marching orders from up above, the hypothalamus and pituitary. Maybe the hypothalamus gets directions from some other aspect of the brain too--? The testing that goes on can look at the actual health of the adrenal gland--is it diseased or failing all by itself, the usual type of testing--or at the circulating available cortisol, which varies all day depending on need supposedly, but in many of our cases, depending on what our dysfunctional systems of messaging say it is.

We have a high level neuro-endocrine-immune system disorder or illness.
 

Tired of being sick

Senior Member
Messages
565
Location
Western PA USA
Due to Amitriprtyline aggravating my POTS ,I decided to quit it cold turkey...........

I'm going to take the route of eliminating my chronic pain out of the sleep equation.......

To be continued.
 
Messages
58
Gabapentin is sort of working for me. It does take 3-4 hours to kick in though. When it starts to hit me, I feel dizzy and tired, which is fine with me. Fine after all these years of not getting tired enough to sleep. I still have to take clonopin with it though. The difference is that I take less clonopin and I do not wake up a few hours later and have to take another 1/2 clonopin. The gabapentin lets me sleep right though the night and even if something wakes me up I can actually go back to sleep. Stay tuned, things change.

Is anyone else having luck with anything?
 

physicsstudent13

Senior Member
Messages
611
Location
US
It is a wonder drug for me, I think it's saved thousands of brain cells and neurons maybe more from low oxygen death

yes I do get some dizziness when I wake up from 600mg of Gabapentin, this is the dose at which it increases slow wave sleep, but it seems like a minor side effect. the other side effect is possible synapse formation stopping
 
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Sing

Senior Member
Messages
1,782
Location
New England
Yes I agree that Gabapentin is very, very helpful. I too use it in combination with some other things to keep me asleep and out of pain. My dosages aren't high enough to completely knock me out though. I am still subliminally aware of pain during the night, which is something of a trial, but I usually only get out of bed once in the middle of the night to use the bathroom.
 
Messages
58
Yes I agree that Gabapentin is very, very helpful. I too use it in combination with some other things to keep me asleep and out of pain. My dosages aren't high enough to completely knock me out though. I am still subliminally aware of pain during the night, which is something of a trial, but I usually only get out of bed once in the middle of the night to use the bathroom.

Yes, 600 mg works for me too. For a few nights I was able to cut it down to 300 but now I'm back to 600 mg. I sure hope it doesn't stop working. May I ask, in case I have missed it, what your pain is? Do you have fibro? Or is it some other kind of pain?
 

Sing

Senior Member
Messages
1,782
Location
New England
With gabapentin, tolerance develops so increasing the dose tends to be necessary. The top limit is supposed to be in the 4,000's! The kidneys process it, not the liver, which is better as the liver takes the brunt of a lot of stuff, but it is good to get a kidney function test now and then if you use it for a long time.

My pain most people would call fibro, but maybe the more accurate term would be myofascial pain syndrome. I have neuropathy too and osteoarthritis--so, all told, quite a bit of aching. I can often distract myself from it during the day, as well as get out of a lot of it by tailored movement, self massage, walking, etc. but these are all very temporary and it comes right back.

As I get older most things get worse, but one thing is better. As I become weaker and less able to do as much exercise, my muscles don't contract as hard. They can't fight as hard. If something is fighting you, it is better if it is weak--ridiculous, but there it is.
 
Messages
58
I'm sorry about your pain. That would make sleep doubly hard. You're probably tried everything but I heard that acupuncture helped with neuropathy. I am getting the osteo too--seems to be coming on all at once, pretty depressing. Started Glucosamine again.
Thanks for the information about gabapentin and tolerance. I had no idea except from my own perceived experience. I wouldn't be typing this as 6 in the morning if it still worked at 600 mg. I would still be asleep.
 

physicsstudent13

Senior Member
Messages
611
Location
US
one major problem with gabapentin is it stops formation of new synapses. But my sleep apnea is severe so it is probably saving more brain cells than it is destroying and my cognitive function is better on the klonopin+gabapentin combo.
does anyone know why the klonopin+gabapentin combo works?
I've been to doctors for 8 years and no one prescribed me the gabapentin+klonopin, my sleep apnea is so bad that I think there is a lot of scamming going on in the medical system since I was never prescribed the right medication and my brain was damaged from this
 
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Messages
58
I recently saw an explanation but I don't know if it was on here. They work in different ways though. It's kind of weird. I don't now why doctors don't know these things and why we either have to read about it on here or figure it out for ourselves. They would rather prescribe some pill that doesn't work for us or has terrible side effects.