Episodes of hypersomnia starting

[frozenborderline]

Has anyone here gone from normal cfs tiredness that is not sleepy to Hypersomnia , sort of suddenly? Ive started sleeping almost 24 hours at a time, its scary, impractical and not normal


Its like an awful sickly kind of black enchanted sleep

What tests should I get? I've had sleep studies that were pretty normal but it was before this hypersomnia phase

IM trying to see what my intuition thinks would help medication wise. Wondering if the antiinflammatory effect of some antibiotics like amoxicillin or doxycycline would help, or LDN. I have a faint memory of those helping with my hypersomnia when I had them earlier in my illness

im not sure I've ever had hypersomnia episodes quite this bad even though I have had them before a few times. Like yesterday I slept for 20 hours at least and was still sleepy when I woke up.

I can't force myself to wake up during these episodes , and it just makes me sicker to try.

Even if I schedule a sleep study, in the meantime what tests would help. Are there any blood tests that would help. Is hypersomnia sign of any infectious or autoimmune disease ? Are there any meds for it? Like narcolepsy meds? Do people have ideas on the etiology of hypersomnia and narcolepsy?


Is cci somehow related to sleep disorders ?



@Hip @Learner1 @sb4 @JenB @jeff_w @Gingergrrl

 

[Hip]

I had a lot of hypersomnia when I first caught the virus which triggered my ME/CFS. I was not that tired initially, but would tend to want to sleep all the time. Not sure why.

 

[xebex]

Not sure this is the same thing but I get excessive sleepiness but I can’t actually sleep, it can last a couple of hours to maybe 6. I have to lie down and feel almost paralyzed but am not. I do believe it’s caused by cerebral hypoperfusion (lack of oxygen in the brain) and cci can cause that also due to brain stem compression.

For me making sure I keep my mouth closed (I’m not a mouth breather but I was an excessive “sigher”) has helped with the smaller sleep attacks but I still get the big ones which I don’t think are related to my breath.

 

[pattismith]

My brain fog is related to a kind of daytime sleepiness. It can be reverted by narcolepsy drugs.

 

[Gingergrrl]

Are there any blood tests that would help. Is hypersomnia sign of any infectious or autoimmune disease? Are there any meds for it? Like narcolepsy meds? Do people have ideas on the etiology of hypersomnia and narcolepsy? Is cci somehow related to sleep disorders ?

@Hip @Learner1 @sb4 @JenB @jeff_w @Gingergrrl

I got your tag and don't know the answer but wanted to ask you a few more questions about it.

- When you say "hypersomnia" do you mean excessive drowsiness so once you fall asleep, you can sleep for 20+ hours or do you mean a narcolepsy type episode where you literally have no control over your brain going from wake to sleep (such as you could fall asleep while eating or driving, etc)?

- Also, do you feel sedated as if you were drugged prior to needing to sleep? This may be irrelevant to your situation but when I had a failed taper off hydrocortisone (Cortef), my ACTH & Cortisol were basically undetectable on blood tests and (in addition to other symptoms), I literally could not stay awake and had no stamina to function. I had no choice at that time but to go back onto the hydrocortisone (Cortef). Do you know what your ACTH, Cortisol, and thyroid levels are?

 

[crypt0cu1t]

This alongside Derealization is my worst symptom. It's miserable

 

[Violeta]

I know someone who had hypersomnia brought on by Lyme. He got his catecholamine levels tested and was low in dopamine...Lyme can cause that. His doctor gave him l-dopa and it helped with the hypersomnia and other symptoms. (I wouldn't take the l-dopa, but at least he got help.)

 

[Howard]

This may not help, but whenever I ingest small amounts of CBD oil, the following day I cannot stay awake. And then the day after that, I experience (entire body) burning muscle pain.

Has anything recently changed in your diet?
New supplements? Medications? Could it be the summer heat or temperature sensitivities? A recent flood (mold in your home)?

As an example, CBD oil used to benefit me, but all of a sudden.. boom!

Perhaps an elimination diet could help...

H

 

[Judee]

Is cci somehow related to sleep disorders ?

I'm guessing the answer is yes but have you tried tractioning or therapy for this to see if it helps w/the sleep issues at all?

I do think there are threads on that somewhere here on PR.

 

[bensmith]

Yeah i get this. Bpc-157 helped some.

 

[Learner1]

@frozenborderline

If this is a daily thing, I hope you have a loved one close by who can advocate for you.

Things that could be tested for include:

- Addison's disease or other adrenal malfunction

- thyroid - not just TSH, but FT3 and FT4, the actual hormones

- other endocrine testing

- imaging as described on jeff_w 's mechanicalbasis.org website, particularly if neck or back or head position seem to increase or decrease symptoms

- viruses or other infections known to cause fatigue. This would include herpes family infections, particularly HHV-6, HHV-7, and Epstein-Barr, chlamydia pneunoniae, Lyme and co-infections.

- catecholamines, particularly dopamine, epinephrine, and norepinephrine, and a plasma amino acid panel which would test the amino acids used in making these neurotransmitters.

- arsenic toxicity, known to stop ATP production, and any other chemical or heavy metal that you may have been recently exposed to that could cause such a reaction.

- B vitamin levels

- mineral levels

- toxicity or rare reaction to some drug a doctor gave you recently

Trying to think of anything else that could quickly cause your situation. Anyone else?

Best wishes...

 

[frozenborderline]

When you say "hypersomnia" do you mean excessive drowsiness so once you fall asleep, you can sleep for 20+ hours or do you mean a narcolepsy type episode where you literally have no control over your brain going from wake to sleep (such as you could fall asleep while eating or driving, etc)?

The first basically

 

[frozenborderline]

This alongside Derealization is my worst symptom. It's miserable

Did ivig affect it

 

[crypt0cu1t]

Did ivig affect it

IVIG took it away in 2018... Those 2 months of remission were amazing.

Low dose ivig brought it all back

 

[judyinthesky]

I have switches to hypersomnia from insomnia and don't understand why! The more I sleep the more lead in body feeling I also have.
It's like the body desperately tries to get more energy