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Sleep Paralysis?


Waitingindreams

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Waitingindreams Enthusiast

I've had a semi-frequent issue with sleep paralysis for years now. That, mixed with my chronic fatigue and inability to stay awake even when struggling - led me to believe I had narcolepsy. I was tested for narcolepsy and diagnosed with Idiopathic Central Nervous System Hypersomnia..which is close to narcolepsy. This was in August of 2012.

 

I was prescribed a drug called Nuvigil, which I was paranoid about taking because of the side effects - not to mention it was very expensive. Now that I have been diagnosed with celiac disease, the sleep/fatigue issues are still there, but to a lesser extent.

 

I haven't noticed the sleep paralysis for awhile, but just today when I was napping (I'm sick, so I missed work) it happened a few times. It's terrifying, and I was wondering if anyone else has experienced this. Is there any connection to celiac disease/gluten at all? It's really, really scary - because sometimes I stop breathing in my sleep and I have to force myself awake. It's unsettling. (And no, I don't have sleep apnea or any other issues, I've been tested)


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shadowicewolf Proficient

I would get it every so often before i went gluten free. So far, I think i've only had it once in about two years or so.

Waitingindreams Enthusiast

That's certainly good to hear. It hasn't happened with me in awhile either - this is the first time since I've been diagnosed, I think. It was happening pretty frequently before. What is scary is that sometimes I toss and turn and end up on my stomach with my face in the pillow..and then the paralysis would set in and I was suffocating, I couldn't breathe -- and I had to force myself awake so that I could move my face and breathe. This happened multiple times...but I sometimes stop breathing even when my face ISN'T in the pillow...like if I'm having a dream where I'm underwater or something. Ridiculous. The sleep specialist gave me no help or insight on this at all, so i do hope it will go away with time/a healthier diet.

  • 4 weeks later...
Cary Newbie

I used to have all sorts of issues when I was in my 20s, before I figured out all my problems.  I had serious constipation before the Celiac was ever discovered, and I therefore don't know if I always had Celiac or the Celiac only popped up after my gallbladder surgery.  But I always had headaches, migraines, insomnia, daytime falling asleep (even standing up), malaise, low weight, couldn't gain weight, skin problems, Raynaud's, and on and on. 

 

I noticed a problem with peanuts causing headaches when I was little, although family members scoffed over this. 

 

I also had some improvement with phlegm and maybe some other things by stopping dairy. 

 

Since having my gallbladder out and having the surgeon tell me I had Celiac disease and stopping gluten, I stopped having Raynaud's.  My insomnia seems more linked to constipation, but I supplement all my deficiencies, and that seems to be helping the insomnia also.  My pain issues (aching bones) is resolved now.  I take magnesium in the morning, calcium and vitamin D (2000 IU) at night, and 25 of zinc. 

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    • trents
      @cristiana, I'm thinking the intensity of our response to the same amount of gluten can vary from time to time. Our bodies are a dynamic entity. 
    • Scott Adams
      I'm going to try Jersey Mike's soon--we have one nearby. Thanks for sharing!
    • cristiana
      Hi @trents Two things can happen:  1/ For a very small gluten hit, I will get a slightly sore stomach for a few days, maybe a day or two following the glutening, and (TMI warning) maybe slightly loose BMs with mucus  for a couple of days.  2/ For a substantial glutening, and thankfully it's only happened once in recent years,  I get bad chills, followed by vomiting, and my heartbeat is all over the place and I can hardly stand.  It's pretty extreme.  That happens within about 2 hours of eating the gluten.  I might feel slightly dizzy for a couple of days after the glutening episode. Interestingly I've just been out to a cafe which hitherto has made a big thing about how their french fries are cooked in a separate fryer.  I shared some with a friend and they were served with chilli sauce, jalapenos, cheddar cheese and fried onions.  Definitely not health food!  Anyway,  I'd eaten half when I realised I'd not checked the menu to ensure that this dish is still gluten-free - and it turns out it isn't!!!  They've changed the ingredients and the fried onions are now cooked with wheat.   I came home expecting to feel dreadful as I had no idea how much gluten I have consumed but so far if anything I feel just little queasy.  I think I'd have thrown up by now had there been a lot of gluten in the onions.  
    • trents
      It might be wise to start him on small amounts and work up to 10g. Monitor how he reacts. Some people simply cannot complete the gluten challenge because it makes them too ill. By the way, you can buy powdered gluten in health food stores, at least here in the states you can. With a food scale, it would be easy to measure the amount being consumed in a day. I'm not sure what the intensity of reaction to gluten tells you about what's actually going on with regard to celiac disease. I mean there are some celiacs like me who don't seem to react to minor exposure amounts but who get violently ill with larger exposures. Then there are celiacs who get some kind of reaction to even the tiniest amount of exposure but don't necessarily get violently ill. And how the reaction manifests itself is very different for different people. Some, like me, experience emesis and diarrhea. Others just get brain fog. Others get joint pain. It's all over the map.
    • melthebell
      That's interesting - that's a lot of gluten! I'll be very curious to see how my son responds to the gluten. In some ways, I guess having a strong reaction would tell us something? It's tough navigating this as a parent and having it be not so clear cut ;\
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