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Idiopathic Hypersomnia?

JRock

By JRock
in Related Issues & Disorders

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JRock Apprentice
JRock
Posted

hi there!

long time since i posted (and if i'm not at work, i don't care a bit about capitalization so i apologize) - any other celiac been diagnosed with idiopathic hypersomnia (IH)?

3.5 years ago, i was diagnosed with celiac, 1.5 years ago they added microscopic colitis to the list of my problems, then after being on entocort for the colitis (no idea if it's related) i started falling asleep... at work, in meetings, while driving. i also sleep for 16-18 hours on days where i don't have to work (and make sure to get 8 hrs on week nights - with some napping if i can swing it). two sleep studies and an MLST later, narcolepsy was ruled out (thus, my insurance will only pay for generic stimulants like adderall)... this is getting absurd. no dose of adderall/focalin will keep me awake anymore. they never really did, but kept me from falling asleep at the wheel or at work.

my new sleep doc (got a second opinion after my original sleep doc decided to try me on extremely high doses of focalin, saying there was nothing else he could do) had me try samples of nuvigil. it helps a LOT (i can't afford the cost without insurance, so i'm hoping a cheaper generic provigil comes onto the market soon)... but only for about 6-7 hours. i feel sane again during those hours - intelligent, awake (but not cracked out) and back to being my articulate self. but then i crash (in today's case, while driving) and when i do crash, i become this dizzy, inarticulate, almost drunk person.

i was diagnosed with RLS, periodic limb movement disorder and REM sleep behavior disorder during the sleep studies. i have since gotten off any meds outside of those absolutely necessary (apriso for colitis, horizant for RLS, stimulants for daytime, triazolam for night)... still on a completely gluten-free diet.

anyone else have a similar diagnosis? i'm 31, female, never had a baby, work 6:30am-4:30pm, exercise regularly, have a healthy diet and take care of myself. worth noting that when i had celiac, i hit about 110lbs (i'm 5'10") then leveled out at 125lbs. since the IH (and stimulants) i'm at 140lbs. had a "bod pod" yesterday indicating that i'm about 31% body fat and was told to try to reduce my caloric intake to 1500 cals/day since i already work out 4-6 times a week (strength training, running, dance).

seems like when i eat, it sits in my gut for hours... i have been trying to build up strength and cardio endurance, but my muscles don't seem to want to cooperate.

frustrated and tired of dragging myself through the day so i can afford to take care of my basic needs...

Jen

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