Suddenly sleep quality has become unbearably worse

[starlily88]

I am told my cortisol is screwy...too high at night...too low in the morning. But since I passed the test I don’t think Hydrocortisone would help me..

Sorry you have had to be on meds so long. But I hope it has helped you. I wonder if all of us have high cortisol at nite - and that's why most of my friends that have this, can't sleep past a couple hrs at nite.

 

[Ravijojla]

@soxfan , how are you these days?
I'm new on this site but I have CFS for 6 years and "lot of experience"
Your sleeping problems and other symptoms are same as mine. For the last 3 years I almost don't sleep at all and when I sleep (5 hours max) it doesn't make any difference to my energy level in the morning. I feel like sh.t!
I tried everything... I'm hypersensitive to antidepressants so I stopped them completely; plant supplements are usually helping a bit for few days and then the agony starts again. The best way psychologically is to accept this situation and not to increase the stress even more. During the day avoid every physical stress, don't use stairs, don't lift heavy things, don't run, don't talk loud and long, use every possible help! Physical stress is worsening the sleep in my situation.
2 days ago I started with D-ribose, low dosage 2x2grams, and I sleep a bit better. I have more energy too but I don't know if that is from ribose or from sleeping 5 hours last night. I have to wait for at least 10 days to see if this will help long term.
Also, next week I plan to start with CBD oil. I heard it is very good for CFS symptoms including sleep. I will post here the results.
I would be soooo happy with 5 hours sleep like I had last night!!! BUT if D-ribose and CBD oil don't help long term, I'll search for something new. I have nothing to lose because it can only be better!

 

[Learner1]

I tried a number of natural things to be able to sleep through the night. But, it wasn't until I added 2g ornithine and 2g citrulline, which support the urea cycle, that I immediately slept all night long.

I also take melatonin, progesterone, calcium and P5P.

 

[Stretched]

Diazepam might help you get off/substitute for all sleeping rxs, then titrate off of it (Valium). It’s worth a try. I got off years of klonopin and the dreaded Ambien without too
much trouble. OTOH, you have to build back up your sleep regimen after withdrawal. The brain seems to get habituated then doesn’t want to change back easily to
some prior baseline.

 

[Wolfcub]

Definitely cortisol spikes can keep you wired and waking up in the night. It may not be a clinical situation which shows up but there could possibly still be an issue with imbalance?

I am suspicious myself of cortisol as I am happier in myself late at night, and almost NEVER get a "funny turn" after 10pm! But I am wet rag in the mornings and get shaky in the days, sometimes early evenings.
However I do sleep continually and soundly, so I am unsure....

I am having a cortisol test in a few days' time. But I bet it will be "normal" !

There are herbs that can help just re-balance the adrenals rather than medicate yourself to a drugged sleep (if you are low or too high), but there is so much to learn about the balancing act of cortisol, that I am still learning a whole new thing here. So don't want to go off at the deep end recommending herbs yet. But you could research it? You might get some clues to help.

 

[hamsterman]

Definitely cortisol spikes can keep you wired and waking up in the night. It may not be a clinical situation which shows up but there could possibly still be an issue with imbalance?

I am suspicious myself of cortisol as I am happier in myself late at night, and almost NEVER get a "funny turn" after 10pm! But I am wet rag in the mornings and get shaky in the days, sometimes early evenings.
However I do sleep continually and soundly, so I am unsure....

I am having a cortisol test in a few days' time. But I bet it will be "normal" !

There are herbs that can help just re-balance the adrenals rather than medicate yourself to a drugged sleep (if you are low or too high), but there is so much to learn about the balancing act of cortisol, that I am still learning a whole new thing here. So don't want to go off at the deep end recommending herbs yet. But you could research it? You might get some clues to help.

I think that describes most of us. And I think there is some research that PWME are far more likely to have cortisol issues.

I wouldn't be surprised that a large portion of our daily non-PEM malayse is related to cortisol problems.

 

[starlily88]

I think that describes most of us. And I think there is some research that PWME are far more likely to have cortisol issues.

I wouldn't be surprised that a large portion of our daily non-PEM malayse is related to cortisol problems.

I went to Endocrinologist in spring who wanted to run an "ACTH" test - which I think is doing a baseline blood draw, then shot of a cortisol related product and then take blood draws next 2 hours, I think. I wish my insurance covered this test - because it is done at 8 AM when the cortisol levels are supposed to be the highest of the day.
I had a "blood" test from another Endocrinologist who claimed the blood test for cortisol was just as good as ACTH test. I think the ACTH test might be more helpful - I know I am wide eyed and bushy tailed at night. Somewhere around 3 AM onwards, at last I get tired - but if I don't jump into bed, this passes.

 

[Ravijojla]

I came back here to give information about Ribose and CBD oil. They didn’t help. Taking ribose made no difference to my usual low energy and poor sleep. CBD oil was beneficiary to some sleeping issues but the feeling of tiredness was extreem during all the period I was taking it and for the several days after stoping. I can not recomend any of these.
Next I will try sleeping in EMF protective bag, wearing EMF protective head net, and also will try to be grounded (Earthed) as much as I can during the day.
I will post here my experiences with that.
Ciao!

 

[Learner1]

D-ribose combines with niacin to make nicotinamide riboside which has been found to increase ATP production in the mitochondria of some people. It makes sense that it might not help sleep.

I take a CBD oil product for nausea and headaches after my IVIG treatment. My indersrsnding is that different strains of the plant produce different products with different properties so that some may be better for sleep or abuse or headache than others. The one I use does not put me to sleep.

I'd be interested to know how your EMF experiment goes!

 

[Ravijojla]

D-ribose combines with niacin to make nicotinamide riboside which has been found to increase ATP production in the mitochondria of some people. It makes sense that it might not help sleep.

I take a CBD oil product for nausea and headaches after my IVIG treatment. My indersrsnding is that different strains of the plant produce different products with different properties so that some may be better for sleep or abuse or headache than others. The one I use does not put me to sleep.

I'd be interested to know how your EMF experiment goes!

Hi Learner1!
After one month of using EMF shielding and grounding periodically during day or night, I have some good and some bad news. For 3 weeks I had much better sleep, I felt calmer and overall energy was higher. I was so happy expecting that I will be pushed to lighter variation of me/cfs. But on the 4th week I got a cold after which all benefits stopped. I’m back to terrible sleep, no energy even for talking, laughing, preparing food... EMF shielding and grounding don’t help any more.
I’ll try to stop this bad cycle by introducing some changes. I realised that when something stops working, I can come back to something previously worked (worked for a limited period). If I explained it well... I’ll change some supplements and eating habits, or period for relaxasion, or whatever comes to my mind. After some time EMF shielding and grounding will be used again.