I've had insomnia for years, as long as I can remember. I have neuropathy (HNPP), Charcot-Marie-Tooth disorder, and ADD, so my brain is always active (confirmed by brain-waive study). Even if I take 2 or 3 Ambien and lay down I can't sleep, I just get dizzy/restless for 2 or 3 hours or so, and them I'm back to being fully alert. I've been to numerous sleep doctors and have tried every sleep med out there.
While I previously slept 2-3 hours a night (which I could function on), I now am awake for 3 or 4 days at a time, until I "crash and burn." i no longer have any energy (although Adderall helps a bit), I have missed a lot of class, and I have no social life anymore because I always feel to sick/weak to do anything.
Some of the symptoms I have are:
- Neuropathy Pain & Numbness (had a ulnar transposition on both arms)
- Blurry Vision
- Weight loss (40lbs in two months)
- Constantly sick due to poor immune system
- Memory loss
- Fever or Cold Sweats
- Difficulties keeping track of time (miss a lot of appointments)
- Allergies & IBS (Unrelated)
One symptom that has me a bit worried though (and I usually never worry) is that I get random muscle contractions/spasms that last 1-4 seconds, sometimes a few seconds longer. Feels like I'm having a heart attack and seizure at the same time. Usually when the "episodes" occur I feel like I can't breath and have to hold onto something or sit down because I feel I'm going to faint.
Most sleep docs I've been to, even at Standford, have said I won't be around very long if my sleep isn't fixed, so not a good outlook. Although I try to stay positive I do have a "feeling of doom." My symptoms seem similar to sporadic fatal insomnia. I know its very rare, but SFI is caused by a gene mutation in the brain and the reason I have Neuropathy and CMT is due to me having a gene mutation in the brain...
So my question is are the recent changes in my sleep a sign that my health is rapidly deteriorating? Also, do you think the "episodes" I am experiencing are seizures?
Thanks for your help.