Excessive Daytime Sleepiness/RLS/Idiopathic Hypersomnia

[shreebies]

A couple years ago I saw my primary physician for excessive tiredness and inability to concentrate/focus. All blood tests came back normal. He said before diagnosing ADD he wanted me to go to a sleep lab. At the sleep lab I had a mean sleep latency of 5.4 (4 of the 5 tests were under 5 minutes). There was no REM in any of the 20 minute naps, ruling out narcolepsy. The sleep doctor (a heart specialist) said it was Idiopathic Hypersomnia. I tried Provigil - it didn't work. I tried Provigil + Ritalin - I just felt overly stimulated, anxious, and angry. I got a second opinion from another doctor (also a heart specialist) and she said she suspected Restless Legs because it's in my family. I do wiggle my feet constantly, but I don't have any weird feelings in my legs when I stop - it just seemed like a habit I picked up from watching my Dad shake his foot all the time. It doesn't keep me up and there were no leg jerks or anything on the sleep lab results. Regardless - I agreed to try the Requip prescribed. Surprisingly, I felt much more alert, less tired. However, it made me so sick that I lost 20lbs in a month and a half and had to stop taking it. I thought that maybe I felt less tired because I couldn't seem to hit a deep sleep while on the medication. I had night sweats and tossed and turned all night. I feel a sleep drunkenness on awakening and I didn't have that while taking Requip. I attributed it to not being able to hit that deep sleep - so no need to 'come out of it.'

Anyway - three other things I noticed that seem weird to talk about are:
- right hand shakes/tremors when yawning (not all the time, but if i'm REALLY tired)
- sometimes my head cracks when yawning (not my jaw, but in the occiptal region) and it's audible to others
- i sometimes hear a liquid sound inside my head - this sounds really weird, but it's a very quiet trickle gurgling sound. I'm not sure if it's postnasal drip but I don't *feel* anything. I just hear it - around the same region that the clicking sound originates from (not at the same time)

I'm just VERY tired of being tired all the time. I feel tired from the shoulders up - not physically. I'm just wondering if it's worth seeing a neurologist about since the only two doctors I've talked with were heart specialists.

Also - if any of this isn't normal - I'd appreciate knowing It's hard to tell what's normal and what isn't after dealing with it for so long.

Thanks!

[MG (Admin)]

Our sleep expert wants to know:-

1) What dose of ritalin / provigil / mix you took?
2) How long it takes you to fall asleep at night
3) Whether you fall asleep whilst watching TV in lectures / meetings etc?
4) How many hours you sleep at night
5) Whether you wake up during the night

[shreebies]

1) What dose of ritalin / provigil / mix you took?
400mg Provigil / 20mg Ritalin SR

2) How long it takes you to fall asleep at night
Usually pretty much instant (or so it feels). It's a rarity (usually stress) that I'm not out when my head hits the pillow.

3) Whether you fall asleep whilst watching TV in lectures / meetings etc?
I don't fall asleep during meetings when people are talking with me. I do fall asleep while watching movies/tv. Mostly - I space out (as if I'm sleeping with my eyes open). Spacing out happens all the time: while driving, while in front of the computer, the t.v., during conversations. It's like I forget to blink and get into a really deep daydream.

4) How many hours you sleep at night
Minimum of 8. If you let me sleep 10, I would. But I do wake up. I just can't seem to keep my eyes open so I fall back asleep. I don't have a problem waking up to alarm clocks and such. I'm just so groggy that if I don't immediately put my feet on the floor, I'll fall back to sleep.

5) Whether you wake up during the night
I wake up and roll over about 3-4 times/night (that I remember). I immediately fall back to sleep. I don't know what's waking me though.

Polysomnograph
Stage 1 - 47 minutes / 14.8%
Stage 2 - 198.5 minutes / 61.6%
Stage 3/4 - 45.5 minutes / 14.1%
REM - 31 minutes / 9.6%
Sleep efficiency: 70%

MSLT-
nap 1: 15 minutes to sleep onset - no REM
nap 2: 2 minutes to sleep onset - no REM
nap 3: 5 minutes to sleep onset - no REM
nap 4: 3.5 minutes to sleep onset - no REM
nap 5: 2.5 minutes to sleep onset - no REM
Mean sleep latency was 5.6 minutes. (If you take out the 15 minutes on nap 1 it would be 3.25)

I'm 31. When I was younger I had sleep paralysis and hynogogic/hypnopompic hallucinations. No cataplexy ever. I haven't had sleep paralysis or the hallucinations on awakening in about 5 years. Sometimes I still get them upon falling asleep (just audible).

[MG (Admin)]

So 400mg of Provigil alone did not help?

Did you ever try a higher dose of ritalin than 20mg SR?

Does anyone in the family have a similar problem?

[shreebies]

400mg of Provigil alone didn't help. I didn't try a higher dose of the ritalin because I found myself really irritable and angry while on it. It was actually helping with fatigue/energy in conjunction with the Provigil. But I was really combative while on it, which resulted in more stress/conflict.

My father and aunt have RLS. My brother was diagnosed as borderline narcoleptic. (Not sure what 'borderline' means. He didn't push them for details because he's in Canada and you can have your license revoked as a Narcoleptic there.)

[clinicalguru1]

..but did you try ritalin alone i.e. without provigil?

[shreebies]

No, I didn't try that.

[clinicalguru3]

It does very much sound that you have hypersomnia (with or without narcolepsy).

This basically means that you feel tired no matter how much sleep you get.

RLS (restless legs syndrome... more info at http://www.asktheneurologist.com/restless-legs.html )actually causes insomnia and is not compatible with the fact that you fall asleep so quickly at night.

Assuming secondary causes such as obstructive sleep apnea were ruled-out with a sleep study then the question is really how to treat you.

In terms of meds..of course you need to consult with your treating physician, but it makes sense to try a long acting stimulant (concerta or ritalin LA) and to slowly increase the dose.

You may have side effects at first but these normally pass ...and also I would expect them to be less pronounced than when you combined provigil with ritalin.

Please let us know how you get along.


All the best

[sweetcarol]

I know the symptoms shreebies described only too well. I felt tired all the time and I visited various physicians. I was not diagnosed with any kind of disease but one physician gave me Provigil and I must admit since I am taking Provigil everything became better. I am having a better sleep at night and do not feel as tired as I used to feel before taking this certain medication.

[rogue]

i have been diagnosed with Complex Sleep Apnea and also Idiopathic Hypersomnia with Long Sleep Times. I have tried Provigil, 200 mg first, then 400mg, but i find that i am still excessively fatigued and likely to fall asleep driving or at work. I see that Ritalin is a common prescription, but my doctor has not yet prescribed it, and i'm guessing that is because i am diagnosed BiPolar and i take Paxil and Lithium daily. I am very close to losing my job due to my constant fatigue and inability to concentrate and my memory is very poor. I don't know what other options are available...Does anyone have information that could help?
Thanks in advance!