Switch from insomnia to more sleep?

judyinthesky

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Within the course of two weeks my body made that switch from extreme insomnia to extreme sleepiness.

This is also because my body sees eating as exhaustion. I can't really eat during the day as it would make worse that feeling of lead in the body, that feeling of being strangled by lead like nervous system exhaustion.

This hasn't happened to me before so I am confused, albeit I got longer periods of lead like feeling from eating.

Have pancreas illness and spinal fluid loss also.

Anyone?
 

Learner1

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Within the course of two weeks my body made that switch from extreme insomnia to extreme sleepiness.

This is also because my body sees eating as exhaustion. I can't really eat during the day as it would make worse that feeling of lead in the body, that feeling of being strangled by lead like nervous system exhaustion.

This hasn't happened to me before so I am confused, albeit I got longer periods of lead like feeling from eating.

Have pancreas illness and spinal fluid loss also.

Anyone?
It sounds like you have sone serious things going on and really need to be consulting a medical professional.

Your CSF leak might be helped by a blood patch - have you looked into this?

You stated elsewhere that you worsened after a COVID vaccine. There have been reports of COVID vaccines reactivating various herpes family viruses, which can increase fatigue. Have you had PCR testing for Epstein Barr, HHV6, Zoster, Cytomegalovirus etc.? Any other infections in your past? Treating infections can help.

Feeling uncomfortable with/after eating is a symptom of pancreas illness. Pancreatitis can be life threatening, and worth checking out with a GI doctor.

Best wishes...
 

judyinthesky

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@Learner1 I've got two CFS specialists and a hospital ready to help, however I am too severe to make it into a hospital not to think another procedure
I wish it would be differently I would instantly look into patching.

However I've had the issues of eating as exhaustion when I was mild and before vaccine and blood patch. So it's a pattern just more enhanced.

I have severe pancreas insufficiency which isn't related to pancreatitis, sorry, should have clarified. This has been excluded multiple times with three different imaging tests that are considered to be the gold standard.

And yeah, I agree regarding the serious issues. All my carers do as well.

I've only tested for normal herpes and not had the others. My virus was in Vietnam, 2019 though, started the pancreas illness, which of course could have been there before (and I think it is).

Thank you. For now only interested in the switch of sleeping patterns and whether anyone has experienced this?
 

Mary

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@judyinthesky - about your sleep - have you changed anything in your diet or any supplements or medicines that you take?

I just went through an almost two-week bout of severe insomnia (worse than I've ever had before) and finally discovered that it was caused by too much vitamin C! The last thing in the world I would have suspected. I was taking several tablespoons of liposomal vitamin C a day (home made) because my immune system is subpar, and I finally reached bowel tolerance (which I've never done before) and then the insomnia started. But I didn't know they were related. I cut out all vitamin C yesterday and finally slept.

Just curious - have your doctors tried pancreatic enzymes? I don't have pancreatic insufficiency but betaine HCL with pepsin made a world of difference in my digestion.
 

judyinthesky

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@Mary not any significant changes although I do take vitamin C.. but it was switch from insomnia to more sleepiness..

Yes my pancreas insufficiency is well treated, as good as possible with heaps of pig enzymes a ka Creon
 

Judee

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Could the extreme sleepiness just be your body playing catch up from the period of insomnia?

Edit: Also insomnia can sometimes mess up my eating and gut.
 
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judyinthesky

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@Judee I would say so but it hasn't been a pattern ever before in my ME history with shortened sleep and insomnia. I never slept so much.
I was thinking it could be the spinal fluid

Or maybe it is just that I'm more severe now that there is a catch up pattern
Also noticed more flu like feelings

Hence looking when this happens to other people in which contexts
 
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@judyinthesky - about your sleep - have you changed anything in your diet or any supplements or medicines that you take?

I just went through an almost two-week bout of severe insomnia (worse than I've ever had before) and finally discovered that it was caused by too much vitamin C! The last thing in the world I would have suspected. I was taking several tablespoons of liposomal vitamin C a day (home made) because my immune system is subpar, and I finally reached bowel tolerance (which I've never done before) and then the insomnia started. But I didn't know they were related. I cut out all vitamin C yesterday and finally slept.

Just curious - have your doctors tried pancreatic enzymes? I don't have pancreatic insufficiency but betaine HCL with pepsin made a world of difference in my digestion.
Ah wow I also have this response to high sustained doses of vitamin c, particularly in the liposomal form! Do you have any idea why it might be happening? None of my doctors have had any clue aside from thinking it might have some immunological component..
 

Mary

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Ah wow I also have this response to high sustained doses of vitamin c, particularly in the liposomal form! Do you have any idea why it might be happening? None of my doctors have had any clue aside from thinking it might have some immunological component..
I don't know the mechanism of how or why the high dose vitamin C can cause insomnia- but I did find a few references to this, though no studies. I'm guessing the liposomal part is important because it increases absorption. Actually someone told me that medics in Korea and Vietnam would inject Vitamin C to keep themselves awake and alert when heavy casualties were coming in.
 
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I don't know the mechanism of how or why the high dose vitamin C can cause insomnia- but I did find a few references to this, though no studies. I'm guessing the liposomal part is important because it increases absorption. Actually someone told me that medics in Korea and Vietnam would inject Vitamin C to keep themselves awake and alert when heavy casualties were coming in.
Ah ok that's cool, I'll see if I can find anything else about it elsewhere. Doesn't really matter as I've just avoided taking too much for the last 2 years, but I would still be interested to know if I can find a source.