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Article For Long Sleepers...


klgpdx
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After a long battle trying to get doctors to help me wake up in the morning, I was finally diagnosed with idiopathic hypersomnia. My cardio and neuro won't acknowledge that it may be related to IST/POTS, but whatever. However, this article came out this week about a possible antidote to hypersomnia, which really has me wondering about things. For those POTSies that have hypersomnia (or are long sleepers without a diagnosis), you may be interested as well. Not sure if it applies to us, but I hope it does, because it means that help is on the way! Okay... in a couple of years when clinical trials are over.

http://news.emory.edu/stories/2012/11/antidote_for_hypersomnia/campus.html

BTW, I was finally prescribed provigil (modafinil) after 6 months of asking doctors about it. It just took spending a ton of money on a sleep study to prove I needed it. I can't take a full dose yet, because it gives me terrible headaches. But even a little boost from 100mg is helpful.

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"These individuals report feeling as if they’re walking around in a fog — physically, but not mentally awake," "Researchers at Emory University School of Medicine have discovered that dozens of adults with an elevated need for sleep have a substance in their cerebrospinal fluid that acts like a sleeping pill."

This is exactly how I feel - like I'm awake and asleep at the same time. I feel drugged, as if I took a sedative. I'm not a long sleeper, but I think I get enough hours that I shouldn't be feeling this way. My body wakes up, but my brain trails way behind. We've talked before about how it feels like we're trying to come out of anesthesia or a coma when waking up. In fact I think (for me) the a.m. and post-nap tachycardia might be a direct response to this. My body saying come out of it, wake up, wake up!! Maybe they're onto something - too much GABA enhancing substance. Interesting!

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Thanks. This med looks promising.

Good to hear you got a dx. Will you be trying the med they used ? Fwiw, provigil woke me up

but kept me awake at night. And it made me extremely hyper during the day.

I've had my share of problems with sleep. I had what I called narcolepsy until giving up wheat.

Then my nocturnal myoclonus (jerking when entering Rem) responded to going gf so I got off Klonopin.

I recently went back on Klonopin because I realized even tho diet and sleep supplements helped me,

I needed the Klonopin for myoclonus still. It's not bad enough to wake me up completely but it's still

there.

Now, I'm sleeping like a log but the Klonopin is dragging me down during the day. I'm looking for

something to take during the day to counteract it and this may be it.

Did your sleep study show myoclonus ? I thought if your body can't get into rem, that might explain your

hypersomelence (sp).

Tc .. D

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Interesting. It sometimes takes me forever to wake up. I lie 1/2 asleep, and sometimes fall back asleep or am in a state of being 1/2 asleep until I magically snap out of it, which can take me a few hrs. Like I wake up at 8 am and next thing I know it's noon if I haven't set the alarm. I have had some close calls where this caused me to get to work very late. Luckily I don't have to punch a clock, and I try to make up for this by working extra hours/ahead of time. I have always had the hardest time getting out of bed, even when I was a kid, way before POTS.

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I don't tend to have hypersomnia apart from occasionally, but I do have various things going on with my sleep. I particularly hate it when it takes me hours to wake up properly, and it can be ludicrous if I nap for an hour and then spend another two trying to wake up properly. Coming out of anaesthesia sounds about right.

I also ended up with a thoroughly wonky circadian rhythm. First I developed DSPS (Delayed Sleep Phase Disorder), which meant that I tended to fall asleep at 4 am or worse, and then that turned into Non-24 Sleep Wake Disorder, which meant that I was running on a 25 hour clock and falling asleep an hour later every day. I eventually worked out that I could keep them under control using light therapy and darkness therapy, and that helps my sleep quite a bit. Dawn simulation can be good for waking you up properly, I think it gets your sleep cycle to synch properly so that you're not waking up during the wrong phase of sleep. I should possibly try using it for a nap some time, since they often hit me harder.

I also sometimes get the thing of waking up with my heart racing, overheating and pouring with sweat. Not to be confused with the thing when I wake up in the middle of the night in complete confusion, often with no idea of who or where I am. Although for all I know I get tachycardia then as well, but I'm in no fit state to notice.

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Ah fudge. This is the downside to the information age. Now I'm worried I have this as well. Since I was a teenager I've always needed lots of sleep and feel tired all day. It was better when I was a teen and in college but ever since POTS popped up into my life I barely ever truly have energy and rarely wake up feeling as though my need for rest was satiated. I have been attributing this lately to the POTS and the Tachycardia as well as my problematic MVP and hopefully this isn't hypersomnia.

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Did your sleep study show myoclonus ? I thought if your body can't get into rem, that might explain your

hypersomelence (sp).

My sleep study showed that I have a perfectly healthy sleep pattern, yet I am still falling asleep all day long, which is not normal. I almost wish there was something going on during sleep so it could be fixed! This new treatment won't be available after more clinical trials, and that is only if they get support from the pharma company.

Interesting. It sometimes takes me forever to wake up. I lie 1/2 asleep, and sometimes fall back asleep or am in a state of being 1/2 asleep until I magically snap out of it, which can take me a few hrs.

This is EXACTLY how I am. If I absolutely have to be somewhere before noon, like my job... I am always 10-20 minutes late because I can't pull myself out of it until my adrenaline kicks in when I realize I am late.

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Since I was a teenager I've always needed lots of sleep and feel tired all day. It was better when I was a teen and in college but ever since POTS popped up into my life I barely ever truly have energy and rarely wake up feeling as though my need for rest was satiated. I have been attributing this lately to the POTS and the Tachycardia as well as my problematic MVP and hopefully this isn't hypersomnia.

This is what gets me. I have two specialist doctors telling me that POTS/IST and Hypersomnia are unrelated. But clearly many people who have POTS or IST also have hypersomnia. Which to me, makes logical sense because we expend much more energy than other people. And since they cannot figure out why I have either, it seems especially strange that an otherwise healthy person would have not one, but two "idiopathic" conditions. All of my bloodwork comes back perfectly. I eat organic foods 95% of the time, and I exercise. The only reason I hope that they are separate, is that maybe my hypersomnia can be fixed if the clinical trials with the drug in the article pan out. My tachycardia is really only a problem because I am tired all of the time and can barely perform my job because of it. If something could help me wake up, I would be fine!

Provigil helps a little to wake me up, but the side effects prevent me from taking a full dose.

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I get this too! It takes me a few hours to be coherent enough to function. The last two days I had to help my mom at work which meant being to work at 6am to clean. I can't say I can remember what I did or who I talked to. I feel the same if I sleep 3 hours or 10. I wake up very jittery/shaky but haven't noticed any tachy. My neuro tested my iron and it was less than 1 so I had an infusion. I thought that would have helped with the sleepiness but it hasn't.

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On Friday night i went to sleep 6:30 woke up 11:30pm then went back to sleep 2am until 12am 16hours of sleep in 18.5 hours... But usually like tonight i cant get to sleep until real late like 4am and am lucky if i am able to sleep until 12am and get 8 hours. I think its a no brainer GABA disfunction is at play. I have a general post on here somewhere about GABA..

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Hi

as usual theres a really timely topic on here for me. In 48 hours I managed to sleep for 26 hours, last night I again slept for close to 13 hours and I feel very very groggy when I wake up. It takes me several hours before I come around.

Its really weird because last Friday I only got 4 hours sleep and felt ok. Saturday had about 8 hours, Sunday I had about 10 hours, Monday I had 14 hours and Tuesday I had 12 hours. I seem to swing from insomnia to a normal sleep pattern back to insomnia and then excessive sleeping. This all started when my condition went down hill in 2007.

I tried talking to friends about the excessive sleeping and all I got was oh your so lucky!

Thanks for posting this

Rach

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