Pots Or Narcolepsy?

[blueroses79]

I've been thinking about my symptoms lately because they're such a confusing mishmash of neurological issues, and it struck me that a common theme is sleep. Here's what I have:

--dizziness during summer months on humid days / overheating feelings

--sleep-deprivation triggered dizziness and fainting: this started about 10 years ago, before which I could lose sleep without any such problems. Basically, if I get less than 4 hours sleep I'll be nauseous and lightheaded, and maybe faint. When I do, the faint feels a lot like falling asleep. I dream, and people have said my eyes move like in REM sleep. But it also feels like a BP drop, with foggy ears and nausea before it happens.

--once I peed when I fainted; I was on the way to the bathroom, lol.

--when really tired (always late in the day) my face tingles and a feels puffy, diagnosed as migraine without headache

Tests:

MRI: normal

Sleep-deprived EEG: abnormal in sleep region

Non-sleep-deprived EEG: normal

TTT: positive

So I guess my question is, does sleep-deprivation trigger fainting or near-fainting for any of you? It's not even a sometimes-trigger with me; it's an always thing.

[Katybug]

A daytime sleep study is what they use to diagnose narcolepsy. Mine showed severe daytime hypersomnia but not narcolepsy because I didn't reach a REM cycle when I fell asleep. Have you had one of these studies? They are a fairly common test.

[sue1234]

Does that feeling of nausea, etc. happen at different times of the day? Or, for instance, you say if you only get 4 hours of sleep, so does that mean it happens at 3 a.m.? Or anytime during the day?

[blueroses79]

Does that feeling of nausea, etc. happen at different times of the day? Or, for instance, you say if you only get 4 hours of sleep, so does that mean it happens at 3 a.m.? Or anytime during the day?

It tends to go away as the day goes on, I think. By evening I'll still be out of it, but less nauseous.

[blueroses79]

A daytime sleep study is what they use to diagnose narcolepsy. Mine showed severe daytime hypersomnia but not narcolepsy because I didn't reach a REM cycle when I fell asleep. Have you had one of these studies? They are a fairly common test.

Nope. I'd love to have one, though. If it looks likely I'll ask my neuro about having one.

[sue1234]

I asked because if I get up within 15 minutes of waking, I am somewhat lightheaded and can feel that my vessels aren't constricting to keep my blood flowing. That causes my POTS symptoms to be at their height. I literally have to lay around for at least 20 minutes after waking, then get up. It's like something doesn't kick in until I've been awake for a while.

I also asked because I was wondering about low cortisol levels. Have you ever had your levels tested?

[blueroses79]

I have, but it probably wasn't the right time of day; they were normal. That happens to me too, but it's much more pronounced if I haven't had enough sleep.

This is an interesting idea, though! I take Spironolactone (for acne), and have noticed it makes me feel better in the morning. Without it I tend to wake up with a headache. Spiro increases cortisol levels. I still get very lightheaded in the Summer, though. And sleep deprivation nausea is still bad.

I asked because if I get up within 15 minutes of waking, I am somewhat lightheaded and can feel that my vessels aren't constricting to keep my blood flowing. That causes my POTS symptoms to be at their height. I literally have to lay around for at least 20 minutes after waking, then get up. It's like something doesn't kick in until I've been awake for a while.

I also asked because I was wondering about low cortisol levels. Have you ever had your levels tested?