Narcolepsy Anyone???

Discussion in 'Fibromyalgia Main Forum' started by mdjaj2231, Aug 2, 2010.

  1. mdjaj2231

    mdjaj2231 New Member

    Hi All,

    Haven't been on here in awhile. I have started allergy shots with the hope that I won't be getting sick so often, 3 weeks so far and hopeful.

    I went to touch base with my neurologist today. My pain is much better since I cut out gluten, but I'm still always tired. He thinks I should have another sleep study where I stay there the next day to see if I have narcolepsy.

    I did try provigil for energy a few years back and didn't like it at all. I didn't see any added energy, and I crashed once off of it. He gave me a sample of something else (nuvigil), but not sure I want to try it.

    He told me to take my melatonin with dinner instead of at bedtime, so I'm trying that tonight.

    I'd appreciate your feedback/advice. Thanks.

  2. mdjaj2231

    mdjaj2231 New Member

    My vitamin D levels are fine. I've tried gse before, but it didn't help. Maybe I'll try it again. My thyroid levels are okay too. My daughter has an adrenal gland issue, but I've never displayed one.

    As far as the nuvigil, I read that patients with mitral valve prolapse shouldn't use it, so I'm disappointed my dr. didn't catch that. I had mentioned it to him at that appt. Aussie, where do you live? I'd be happy to get you my samples.
  3. mdjaj2231

    mdjaj2231 New Member

    Meanwhile, my insurance won't cover the second part of the study, so I told them I'm not going to bother to repeat what I've already done. They tried to talk me into it, but I have better things to do than give up a night so they can make money. LOL

    Researching more natural energy sources.

    Would love more advice.

  4. u&iraok

    u&iraok New Member

    Do you have this symptom, too, though not all narcoleptics have it:

    "Another problem that some narcoleptics experience is cataplexy, a sudden muscular weakness brought on by strong emotions (though many people experience cataplexy without having an emotional trigger[citation needed]). It often manifests as muscular weaknesses ranging from a barely perceptible slackening of the facial muscles to the dropping of the jaw or head, weakness at the knees, or a total collapse. Usually only speech is slurred, vision is impaired (double vision, inability to focus), but hearing and awareness remain normal. In some rare cases, an individual's body becomes paralyzed and muscles become stiff."

    Because of CFS causing disturbed sleep you may just be really tired. I used to fall asleep easily for a minute or too, or I'd start dreaming while still awake.

    Definitely you should get the sleep study.

  5. mdjaj2231

    mdjaj2231 New Member

    I do get weak in my legs. I already had the sleep study that they will cover and they said I don't get enough rem sleep, but they had no solutions for it :( I would do the sleep study if they would cover the daytime part. What are you doing now for your fatigue?
  6. u&iraok

    u&iraok New Member

    Yeah, if you have CFS you have disturbed sleep. I don't think you need a sleep study for that.

    I'm doing better. I'm still holding my breath, though, because it hasn't been that long. I didn't take the approach of dealing with symptoms (such as fatigue) but with causes so I had a long process of seeing a naturopath/nutritionist then doing it on my own, to deal with all the things wrong--digestive issues, pathogens, nutritional deficiencies, heavy metals and toxins, endocrine system, emotional issues from past problems, etc. It took years, no quick fixes.

    But I had to learn to pace myself and learn how much I could do and avoid stress and do everything to optimize good sleep while I was getting better. I viewed the fatigue as a positive thing in a way, instead of a negative--that it was my body asking for rest and care and that it was time to give it that, so I did.

  7. FogzIn

    FogzIn New Member

    Study up on Adrenal Fatigue.

    Put 60 hours with no stress (emotional, allergies, physical exertion) on your schedule. Walk 1-3 times a day, as far as you can go or a total of 3 miles, whichever is shortest. do yoga if you know it. Eat for your health, 2-3 times a day or more, but don't overeat. Take .25 mg alprazloam at bed time for two nights in a row with or without melatonin.

    By afternoon of day 3, you should be significantly out of the sleep all the time syndrome, and able to sleep soundly at night for at least 6, more like 8 or 12 hours at night. Continue life gently. don't take Alprazolam every night (it's addictive). keep walking and eating properly.

    As the days continue after this, Stress incidents will sabotage some gains you get from this routine. When you get to sleepiness all day, and sleepless at night ...

    Go back to the 60 hour routine.

    Over time, the days or weeks between the 60 hour routine will get longer, unless there's yet another allergen, toxin, irritant, disorder, life-stress situation going untreated/managed.

    Hang in there. This usually works very well, or well enough to give you a sharper mind, so you can figure out something better to do about your situation.

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