Idiopathic Hypersomnia Diagnosis For Wife

I keep trying to find help for my wife's fatigue issues. I've posted here a couple times about her. She got Lyme 11 years ago or so, was quickly treated, but since sometime around then has been having more and more trouble staying awake during the day.

She had a sleep study a while ago and was just finally able to see the physician to go over the results. His diagnosis was "Idiopathic Hypersomni". My wife asked if it could be caused by Lyme and he said no because of the way she fell asleep at every nap opportunity during the day portion of the test.

My instinct is to not settle at this diagnosis, because it simply means trying stimulant pills... and learning to deal with it if that doesn't work.

At this point would you still try an LLMD if we can find one?

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(I usually post on the Ulcerative Colitis Forum)
Wife: 26 years old with fatigue issues among other things.

I had a sleep study and was diagnosed with idiopathic hypersomnia as well (pre-lyme diagnosis). Since I've started my Lyme treatment, my fatigue is still bad, but I do have weeks where it goes away! My LLMD also found out that my thyroid is low and I have low T, all caused by the Lyme. I DEFINITELY think you should see an LLMD. If she's had Lyme before, I'm SURE that's what it is.

My LLMD is confident we can get my fatigue in order, which gives me a ton of hope.

Imo, most regular doctor don't know enough about Lyme disease to even give an opinion about it plus if they do, they think 6 weeks of antibiotics is enough to get rid of it. Definitely seek out a LLMD and let him figure it out.

Hey Thoreau,

I was dxed with Narcolepsy, which is similar. I got better without stimulants.

I used to fall asleep driving, and I would have to pull over and take a nap, even if it was a freeway shoulder. I still remember napping and being dimly aware of the vibration of big trucks as they went by.

Sometimes I would have time to make it to an exit, turn, and pull into a shopping center.

I fell asleep in waiting rooms, in front of the TV (very unusual for me), etc. etc.

I almost punched my ex bf one morning when he was trying to wake me, LOL, or not so LOL . . . .

I would pursue the previous Lyme dx.

Margaret

My wife has pointed out that she has several relatives on her mother's side of the family that have thyroid issues. She says it could still just be that. If it were that I wouldn't know how to begin either, as her physicians have said everything is normal for her. She's tried meds to change and things only got worse.

It's so hard to know exactly what to do.

This is probably the most horribly debilitating "non-specific" symptoms...Lyme fatigue. Its what I've gone through every flare up since my bull's eye rash, along with some other less annoying symptoms like

arthritis, muscle stiffness and aches, shooting pains. night sweats, different pains everywhere, insomnia, hypersomnia, the list goes on, but the worst when its bad....

INCREDIBLE, DEBILITATING, EXHAUSTING, LIFE-ALTERING FATIGUE. I couldn't drive home from work or watch TV without falling asleep, and your whole body and muscles feel like they are so weak you can barely walk.

She's being disabled by Lyme. Get her to an LLMD before "hypersomnia" turns into "ALS or Lou Gehrig's disease", who by the way, owned a summer home in a little town called Lyme, Connecticut.

FYI-Any doctor other than an LLMD might acknowledge Lyme, but they will almost always steer the focus into something else, something that most of us Lyme sufferers have experienced, usually more than once or twice.