Hypersomnia/asleep again and again

[Nadirtopinnacle]

@Mary
Thanks for replying. It is terrible and killing symptom. Prolactin (hpa axis dysfunction has some involvement with mast cells. Also, dopamine agonist (lowers prolactin) are being looked to be used for controlling autoimmune disease. Also I came across this article https://hhv-6foundation.org/cogniti...-by-a-latent-but-neurovirulent-hhv-6b-protein


Regards,
Np

 

[Mary]

Hi @Nadirtopinnacle - that article is very interesting! especially administering a vaccine through a nasal spray using the "olfactory nerve as a route to the brain". I'm wondering, if HHV-6 is an issue for you, whether andrographis might help. Several years ago I had high HHV-6 titers, only I didn't have a good doctor at the time so nothing was done. But when I was retested a few years later by a different doctor, my numbers had gone way down. I don't know why, I've just tried a lot of things to improve my health. I won't go into them all here, but a few are branched chain amino acids, vitamin A (from fish oil) for immune system, vitamin D, high dose vitamin C, B12, folate, P-5-P, thiamine.

A few years ago I discovered andrographis when it helped my sister recover from a severe sinus infection that ABX did very little for. I started taking andrographis then and have continued ever since. It's helped me get less sick, less often and recover more quickly when I do. It's an immune modulator and very reasonably priced.

This is all a long way of saying that andrographis might be helpful with your immune system if HHV-6 or other viruses are involved with your hypersomnia, etc. And also doing whatever you can to support your immune system - just a suggestion -

 

[Hip]

. I'm falling asleep again and again. Sleeping late and waking up late delayed sleep phase. I'm falling asleep with minor physical and mental activity.

Where are you on the ME/CFS scale of: very severe, severe, moderate, mild? When I was edging into the severe category, and was lying down most of the day and night due to sheer fatigue, I would drift in and out of sleep several times each day.

 

[Rufous McKinney]

I'm on provigil.

Curious: if you care to share how Provigil has helped you or how you deploy it. (I posted a thread a few months back asking about experiences with the generic Modafinil.

I now have ten pills and am afraid to try one. intending to try 25 mgs.

I hope this is improving, its tough, and your experience is really intense......Hang in there...

 

[Nadirtopinnacle]

Where are you on the ME/CFS scale of: very severe, severe, moderate, mild? When I was edging into the severe category, and was lying down most of the day a night due to sheer fatigue, I would drift in and out of sleep several times each day.

I would say severe category.


How sex hormones are linked to autoimmunity and Mast cells. Few studies here.

https://www.ncbi.nlm.nih.gov/m/pubmed/20637236/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3369183/
https://www.ncbi.nlm.nih.gov/m/pubmed/21354470/
http://www.jimmunol.org/content/179/5/2673

Not getting full access to this one. The joint power of sex and stress to modulate brain–gut–microbiota axis and intestinal barrier homeostasis: implications for irritable bowel syndrome.

https://www.hindawi.com/journals/jir/2016/3160486/ (May be linked to people with PIOS as well)

@Mary @Rufous McKinney Worst part is Provigil will lead to hypersexuality and put one back to sex stress intestinal permeability. Prolactin mediates psychological stress-induced dysfunction of regulatory T cells to facilitate intestinal inflammation.

Infact I'm alert next day after orgasm.

Don't know what to do for falling asleep again and again. Rhodea helped but the effect goes off after few weeks. Feel like changing brain, DNA, gut. This is such a hell condition. It is like slow death.

Regards,
Np

 

[Nadirtopinnacle]

Where are you on the ME/CFS scale of: very severe, severe, moderate, mild? When I was edging into the severe category, and was lying down most of the day and night due to sheer fatigue, I would drift in and out of sleep several times each day.

@Hip how long it will take to come out of this sleepy cycle. I am having ME/CFS for 7 years now. I need energy. Can you please suggest something?

Regards,
Np

 

[PatJ]

shutting down/falling asleep again and again suddenly for 10-15 mins even without physical or mental activity though I feel fresh afterwards

Here are some notes I've collected about some people's remedies for hypersomnia:

Iodine, from an interview with Lynne Farrow (author of The Iodine Crisis):
A psychologist in Alaska kept falling asleep and she would even fall asleep while she was counselling her patients. She took Ritalin, she ate coffee beans, she took thyroid medicine and nothing helped. She finally tried iodine and it's really changed her life. She wrote to me and she wanted to use her real name and put it on the web and stuff like that but I said, "No, everyone will be contacting you." But she was a great testimonial because here she's a mental health specialist and it profoundly helped her.

ACV, from EarthClinic:
2 tablespoons mixed with a little honey in water, taken after breakfast.

Gluten avoidance, from Lucy K. on EarthClinic:
I find that eating gluten-free makes a tremendous difference for me. I would say it's like I get 2X the benefit of my daytime med (Nuvigil). I also got a diagnosis of UARS. It's different than sleep apnea but treated with CPAP as well. Not all sleep doctors check for it, so you may need to ask. It can still be very disturbing for your sleep. Mine was interrupting my sleep almost 30 times an hour. Previous studies looking for apnea events didn't catch that.

Red Marine Algae, from Jessica on EarthClinic:
One thing I found to work amazingly well which surprised me was Red Marine Algae Plus. It makes me extremely clear headed and at ease. I just take the recommended dose, though I should note that it does contain beneficial sulfur so if you have improper sulfur oxidization problems or allergies be careful. Though the levels of sulfur are quite low and are very beneficial, similar to MSM.

 

[Nadirtopinnacle]

Here are some notes I've collected about some people's remedies for hypersomnia:

Thanks Pat. Appreciated.

 

[Hip]

@Hip how long it will take to come out of this sleepy cycle. I am having ME/CFS for 7 years now. I need energy. Can you please suggest something?

Lots of patients do make some improvement, and a few patients may go into remission, but generally ME/CFS is not an easy disease to get rid of.

Here are some treatments which have a track record of helping ME/CFS and are used by various ME/CFS doctors, or which have been shown effective in studies:

B12 methylcobalamin injections (or transdermal B12 oils)
Methylation protocol
Low-dose naltrexone
Oxymatrine (immunomodulator for enterovirus ME/CFS)
Inosine (good add-on immunomodulator with oxymatrine)
Epivir (for enterovirus ME/CFS)
Valcyte (for HHV-6 or cytomegalovirus ME/CFS)
Valtrex or Famvir (for EBV ME/CFS)
GcMAF injections
Tenofovir (antiviral immunomodulator)
Nexavir (porcine liver extract)

Ampligen (hard to get and expensive)
IVIG (expensive)
Interferon beta (expensive and benefits usually do not last)

Piracetam (good supplement for brain fog)
Nimodipine (for brain fog and brain blood flow)
Methylphenidate (for brain fog and fatigue)
Dichloroacetate (for brain fog, fatigue and pain)
Modafinil (for brain fog)
Moclobemide (for fatigue)

Pyridostigmine (reduces PEM)
D-ribose (to speed up PEM recovery)
Dichloroacetate (improves fatigue and brain fog)
Probiotics and prebiotics (if there are gut issues)
Rifaximin (for IBS or gut dysbiosis)

 

[godlovesatrier]

This is interesting. I had this problem only 4 weeks ago, falling asleep at the drop of a hat, waking up I am sure like many on here and wanting to go back to sleep immediately. I don't know what causes it but when something either goes out of equilibrium OR a pathogen takes over in the body my theory is this must be what then causes the body to want to sleep constantly. But the other possibility is simply that the hormonal secretions from any number of organs become dysfunctional and stop working, i think this might have been the cause in my case. 4 weeks later I am starting to maybe feel a bit more normal again, I am still not sure.

Also as Mary said Andrographis Paniculata definitely plays a role in allowing me to recover and get back to a healthy almost remission level baseline. Why it does this isn't clear but I still believe that we all suffer (most of us) from a broken immune response which means any virus even if it's one we've had since birth can re-activate and go rampant. The only way to address it is to take strong anti virals (personally I am not sure the pharma ones work as well as the herbal ones) and lower inflamation as much as possible. When the body finally gets on top of things, and the liver, kidneys and lymphatic system catch up with pacing and routine, in my experience (currently on my second recovery session using about 7 herbs in tincture form) the body will gradually pull itself out. But the sicker you are not only the slower the process is, but also the more impossible the task becomes. Because much like one of those really irritating computer games, as soon as you solve or fix one area of the puzzle, it down regulates or up regulates another part of the puzzle and gaining equilibrium in terms of treatment becomes extremely difficult.

Wish you all the best of luck with finding things that work for you though. I can certainly vouch for andrographis. Bare in mind you will feel much worse on it to begin with, but take it in very small doses and gradually increase to 6g a day over 6 months and you should be fine.

Edit: This is not a treatment, but it might get you within 20% of your old self, I think hoping for more until an actual treatment comes along from the medical community is sadly not worth hoping for.

 

[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

“No one can justify life by linking happy moments into a rosary.”

Its like an awful sickly kind of black enchanted sleep