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So, seriously, why can't I sleep?

leokitten

Senior Member
Messages
1,542
Location
U.S.
Just giving my opinion, but I personally think changing up meds constantly day to day is not always a good idea. Nothing short of propofol (M Jackson :)) will work on the bad ME/CFS nights but it's just the nature of the disease and to me it's not worth getting into the habit of having to take an entire pharmacy of additive drugs that have bad long term side effects in order to win every night.

If you find a good combo it's not going to work all the time and that's OK, it's not because it stopped working it's just the ebb and flow of the disease. Just experiment and find the right combo that works most of the time.
 

minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
I never said benzos make me sleep deeper. They are the I only things that initiate sleep.

And switching around helps with tolerance. It has nothing to do with the ebb and flow for me.

For 3 days I woke at 4 am and never for back to sleep. Then as mysteriously as it came it left.

You can't just diagnose an issue,
Say it's low wave sleep, especially Because they said sleep study was fine and dismiss what other's say.

I don't know or care what kind of sleep I get. After 20 years all I know is any sleep is better than none.
 

Never Give Up

Collecting improvements, until there's a cure.
Messages
971
Just like everyone else, PWME can have sleep disorders that interfere with sleep. As a first line approach I would get a full sleep study, if you've got a treatable sleep disorder, great, treat it. If not, try all of the sleep hygiene recommendations. If that doesn't do the trick I think you have to face the fact that sleep disturbance is a part of the disease.

Melatonin has been helpful, for my son.

The biggest sleep improvement came with treating his POTS. Have you been evaluated for POTS? Getting evaluated and properly treated for It could change your life.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,086
Location
australia (brisbane)
Just giving my opinion, but I personally think changing up meds constantly day to day is not always a good idea. Nothing short of propofol (M Jackson :)) will work on the bad ME/CFS nights but it's just the nature of the disease and to me it's not worth getting into the habit of having to take an entire pharmacy of additive drugs that have bad long term side effects in order to win every night.

If you find a good combo it's not going to work all the time and that's OK, it's not because it stopped working it's just the ebb and flow of the disease. Just experiment and find the right combo that works most of the time.


Definitely your opinion.
you have alot of issues with more than one way to skin a cat.
 

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
Elevated cortisol can definitely interfere with sleep. I recently had my salivary and blood cortisol levels checked and I had an evening spike. Here's part of what the lab interpretation from the lab director said:
Chronic high evening cortisol is commonly associated with sleep disorders, fatigue, depression, weight gain in the waist, bone loss and anxiety.

I found several resources on the Internet that discussed how to lower your cortisol naturally. Here's a good one that talks about sleep disturbance with high cortisol:
https://www.moodcure.com/correcting_cortisol_levels.html

I'm now taking Relora, Holy Basil, and Sleep Tonight in order to lower cortisol:
www.amazon.com/Enzymatic-Sleep-Tonight-28-Tablet/dp/B004GWE6XU

Sleep Tonight is less expensive than Cortisol Manager and has the exact same ingredients. Many naturopaths prescribe Cortisol Manager:
www.amazon.com/Integrative-Therapeutics-Cortisol-Stabilizer-90-Count/dp/B0031TRUOG

There are other supplements besides the ones I mentioned above, and you could do a google search to find out about them. Try searching with "supplements to lower cortisol." Others are ashwaganda, ginseng, phosphorylated serine (Seriphos) and Lactium. I don't feel groggy when I take my herbal cortisol-lowering supplements during the day, just calmer.

I also just started taking Seroquel (prescription) to see if it would help with sleep and it does. It's a winner for me in the sleep department. I feel a little groggy in the morning, but that should go away soon.

I would stay away from Dr. Wilson's Adrenal Rebuilder unless a naturopath gives you the OK, because I understand that it is meant to treat people who have LOW cortisol, i.e adrenal fatigue, not HIGH cortisol like you have.
 
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leokitten

Senior Member
Messages
1,542
Location
U.S.
Yes there are many ways to skin a cat but I think it's a good approach to start with. I also agree with @Never Give Up comments about finding any separate underlying sleep issues and trying to treat those as well.
 
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Hip

Senior Member
Messages
17,820
My cortisol is elevated at night and that's the only clue I really have.

Have you tried anything to reduce cortisol secret just before bedtime, such as the supplement phosphatidylserine 400 mg or the anti-fungal drug ketoconazole (though be aware of liver issues)?

Cheapest way to buy the phosphatidylserine is in powder form. Google: phosphatidylserine powder.
 
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CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
Edited: Never mind....about shopping and prices for phosphatidyl serine.
I just read that phosphorylated serine (Seriphos) is the supplement that helps with sleep, NOT phosphatidyl serine.
 
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alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Phosphatidyl serine makes me super sick very very fast. I avoid it. Do be careful the first time you try it.

I think an issue may be, if the brain "inflammation" hypothesis is right, is that we all have slightly different patterns of inflammation. Exactly which parts of the brain are not working may seriously modify what treatments work and do not work. That is why so much of it is up to the individual to figure out, as we can vary considerably from each other.

In my case almost no standard treatments work, from light or behavioural therapy to drugs. Its not that I cannot find things that will knock me out, its that I cannot get restorative sleep no matter what, and I have major risks with the more powerful sleep meds.

Indeed the best way I find, currently, for dealing with sleep issues is to sleep when I need to and can, and not worry at all about when this is. I can do this because I live alone.
 

Hip

Senior Member
Messages
17,820
@CFS_for_19_years

Although according to this post, Seriphos phosphorylated serine "is less expensive and more efficient in converting the stress hormone cortisol than regular PS".

Also the poster said:
When I found out mine [cortisol] was high, I was told to take Seriphos (phosphorylated serine) to help lower it. The Seriphos helped me almost immediately. I started sleeping better and felt calmer and less edgy.

I found it was best to take it in the morning in divided doses on an empty stomach. I later read that this was the best way to take it due to the way cortisol levels fluctuate throughout the day and night. We had to play around wtih the dose - I started wtih 8 capsules a day and after almost 3 years am down to 1 a day.
 

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
@CFS_for_19_years

No in the case of @andrie, it may be his elevated nighttime cortisol that prevents good sleep, and phosphatidyl serine is a good inhibitor of cortisol.

I stated earlier that I thought his insomnia was due to elevated cortisol and I listed several ways to deal with it here:
http://forums.phoenixrising.me/inde...sly-why-cant-i-sleep.37364/page-2#post-593900

So we do agree that his insomnia is likely due to elevated cortisol. However, I disagree that phosphatidyl serine is a good inhibitor of cortisol. It is phosphorylated serine (brand name Seriphos) that is a good inhibitor of cortisol and useful for insomnia caused by elevated cortisol.

https://www.moodcure.com/correcting_cortisol_levels.html

Adapted from The Mood Cure's Chapter 12, "Sleep and Your Moods"

Remedies for mood or sleep problems caused by elevated cortisol:
If you are a night owl, a supplement containing a cortisol-regulating nutrient called phosphorylated serine (brand name Seriphos, this is not the more readily available phosphotidyl serine), taken before dinner (approximately four-six hours before bedtime), should get you to sleep.

If you wake up between 2:00 and 4:00AM take Seriphos at bedtime (by 10:00PM), 4-6 hours before you would typically wake up in the early morning. If you have trouble getting to sleep and you wake up between 2:00 and 4:00AM, take one capsule before dinner and two by 10:00PM. Seriphos encourages your pituitary gland to stop sending the order to your adrenals for more cortisol production. After a month or so, this normalized message should be permanently re-programmed, and you should not need any more Seriphos. Caution: Do not take Seriphos for more than three months total. Take a break for at least 24 hours after each month's use (as per bottle directions).
 
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Hip

Senior Member
Messages
17,820
@CFS_for_19_years
Sorry, missed your earlier post. I have not being paying much attention in this thread; just posted a quick comment about phosphatidylserine to andrie.


Are there any studies showing how well phosphorylated serine reduces cortisol? It may well be that phosphorylated serine is better than phosphatidylserine at reducing cortisol, but if so, there should be some evidence for this somewhere.

These studies show how phosphatidylserine reduces cortisol:

The effects of phosphatidylserine on endocrine response to moderate intensity exercise
Effects of phosphatidylserine on the neuroendocrine response to physical stress in humans


I actually take phosphatidylserine as a mood booster: I find it has an antidepressant effect.

Perhaps phosphorylated serine might be a better mood booster for me than phosphatidylserine.
 
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Hip

Senior Member
Messages
17,820
Phosphatidyl serine makes me super sick very very fast. I avoid it.

I wonder if that might be due to phosphatidylserine's cortisol lowering effect:

Lower cortisol ➤ increased immune activation ➤ more inflammation ➤ worse symptoms


Phosphatidylserine is also of course a component of the cellular membrane, so it might be affecting you via that pathway.