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Dr. Bob is Robert Hsiung, MD,
[email protected]Shown: posts 1 to 7 of 7. This is the beginning of the thread.
Posted by utopizen on April 28, 2003, at 21:45:53
I just had one this morning. Even thought I didn't sleep all night like a good patient, I only got "drowsy" they said during the scan. Of course, I wanted to sleep right after it was all over! If the doc says he wants another one, next time I'm scheduling it for 11am (I think they do that) because I tend to get a rush of energy in the AM after being sleep deprived until closer to noon time.
Anyway, so the nurse said the purpose of it is to collect so much info, it wasn't such a big deal I didn't enter deep sleep, and it was up to the doctor to decide if I need a re-test.
I took it because my neuro, who I saw for the first time, gave me an exam after I complained of getting a shoulder shrug-like tic every so often (1-3x/day) for a second. She diagnosed me with myoclonic jerk (or tic?)
and said it's due to REM patterns being off, so hence ordered the EEG and referred me to the sleep disorder neuro next door.I told her I take Desoxyn (methamphetamine) but I'm still tired during the day, even with 9 1/2 hrs of sleep. I feel refereshed for an hour to an an hour and 1/2 after waking, but after that I'm tired unless I nap for 2 hours, which results in just another hour of feeling refreshed.
She said Provigil or Xyrem could help, but I guess I need a sleep study first, who knows. Seems like I may also have to do another EEG possibly, and either one takes months to get booked for. So basically, I won't get helped for this fatigue issue for quite some time, because they don't want to give you the Xyrem until they feel they know how you are normally I guess.
Posted by Snoozy on April 28, 2003, at 23:35:23
In reply to Anyone have a sleep-deprived EEG?, posted by utopizen on April 28, 2003, at 21:45:53
Yup - of course I wasn't able to sleep during it. If they're flexible in scheduling those, I think that might help, as you're aware of what time you have a regular crash. I've never had a sleep study though - I *KNOW* I would never be able to sleep during one of those.
Maybe they'll let you try the Provigil without doing a sleep study. I know how frustrated and disappointed you must be. I am trying to be more assertive and insistent on the care I'm getting. It's so hard to keep going to the doctor again and again, saying I'm tired, when all I want is to crawl in bed and pull the covers over my head and never get up. I'm seeing my pdoc tomorrow, and I hope I'm able to get somewhere.
How long have you had this terrible problem with fatigue? I've never been a high-energy type, but my severe sleepiness started last fall. There wasn't anything different in my life going on then, so I don't know what this tiredness is about.
One thing I have tried for my fatigue that I don't think I've seen mentioned here, is nicotine gum. One of my doctors said to give it a try (I've never been a smoker). I think it does help a bit. Although - I'm taking Wellbutrin, which they market as a stop-smoking drug, so who knows? Just thought I'd throw the idea out there.
Hang in there!
> I just had one this morning. Even thought I didn't sleep all night like a good patient, I only got "drowsy" they said during the scan. Of course, I wanted to sleep right after it was all over! If the doc says he wants another one, next time I'm scheduling it for 11am (I think they do that) because I tend to get a rush of energy in the AM after being sleep deprived until closer to noon time.
>
> Anyway, so the nurse said the purpose of it is to collect so much info, it wasn't such a big deal I didn't enter deep sleep, and it was up to the doctor to decide if I need a re-test.
>
> I took it because my neuro, who I saw for the first time, gave me an exam after I complained of getting a shoulder shrug-like tic every so often (1-3x/day) for a second. She diagnosed me with myoclonic jerk (or tic?)
> and said it's due to REM patterns being off, so hence ordered the EEG and referred me to the sleep disorder neuro next door.
>
> I told her I take Desoxyn (methamphetamine) but I'm still tired during the day, even with 9 1/2 hrs of sleep. I feel refereshed for an hour to an an hour and 1/2 after waking, but after that I'm tired unless I nap for 2 hours, which results in just another hour of feeling refreshed.
>
> She said Provigil or Xyrem could help, but I guess I need a sleep study first, who knows. Seems like I may also have to do another EEG possibly, and either one takes months to get booked for. So basically, I won't get helped for this fatigue issue for quite some time, because they don't want to give you the Xyrem until they feel they know how you are normally I guess.
Posted by Willow on April 29, 2003, at 9:30:26
In reply to Re: Anyone have a sleep-deprived EEG? » utopizen, posted by Snoozy on April 28, 2003, at 23:35:23
If you can't sleep during a sleep test, wouldn't be a sign that you need help getting sleep, good sleep. I had one done and even hearing other's coughing and such plus having wires glued on everywhere, had no problem falling asleep and staying there. The sleep doc works with the results from the sleep test towards helping get rid of the fatigue.
BEST WISHES
Willow
Posted by utopizen on April 29, 2003, at 16:47:38
In reply to Sleep and sleep test, posted by Willow on April 29, 2003, at 9:30:26
Just saw my sleep neuro for the first time today. He said he wanted me to do an all-night sleep study. It'll be in a couple of weeks.
I asked the nurse practioner if they ruled out apnea, RLS (who could have RLS without knowing it??) and others, if they would continue to see me for what's called "idiosyncratic excessive daytime sleepiness" (fatigue during the day that sleep tests can't account for).
She said no, I'd be referred to the sleep hygienist in the same sleep disorders clinic I go to now. I'm actually hoping they rule out apnea and everything, because they said they don't favor surgery and instead suggest CPAP machines. No way.
But if I just have unexplained EDS, I can try for some Xyrem. I've heard GHB users claim they use to get tired after 9 1/2 hours of sleep, but after taking GHB at night they can continously feel refreshed after 5-6 hours. GHB induces deeper delta (?) wave sleep, which is the most restorative part and necessary for vital functions like insulin regulation, immunity, etc. and secretes more growth hormone in this phase that makes these things happen.
It's good I'm in the phase of getting tested and all that, because it's likely they'll rule a bunch of stuff out (I'm guessing) and send me over to a sleep hygienist in the clinic. And she can just rely on tests already done.
They said the sleep study would be all night, and then if I had apnea they'd give me another one to adjust the machine. Um, I'm in college though, really would hope to avoid looking like I'm an 80 year old smoker in the hospital everytime I go to sleep. I'm guessing they don't make CPAP machines that are designed by Porsche or someone, but I've never seen one.
170 lbs., 6'3'', scrony, but it's still possible they said. My roommate said he never has heard me gasp in my sleep, but I do snore a few times a week. I'm actually seeing an ENT who specializes in snoring in a week too, just to get that ball rolling. Don't want to be snoring when I have a girlfriend.
I feel VERY energetic, refreshed for an hour to two hours when I wake up after 9 hours of sleep, or a 2 hour nap. But then one minute later I'm tired for the rest of the day. WIsh I could feel refreshed all day long. Napping for 2 hours a day is almost mandatory, but it's also impossible while I'm on a stimulant for ADD.
I'd rather feel refreshed from sleeping well than masking things with a higher dose than what I take now of Desoxyn. It's not the same feeling. I also don't feel like I want to eat, but feel crappy over this at the same time. It justs masks needs my body has, and I don't feel comfortable with that. Feeling refreshed after a 2 hour nap is incredible to wake up to, I love it. If I felt refreshed like that all day, I'd do so much more, be so much more happy (although I never get depressed).
Looks like even if I do get Xyrem, it won't be for probably 6 months by the time studies are done, re--requested (possible) and then having to eventually switch to the sleep hygienist there, which may or may not favor Xyrem.
The weird thing is to me is that they told me to take my meds just as I would normally the day of the test. So that means my beta blocker and Klonopin for anxiety, my Desoxyn (methamphetamine) for ADHD, and Evoxac for dry mouth.
Unfortunately this won't help me find out what my patterns are like naturally, but I guess they know best. The good news is I shouldn't have trouble falling asleep on Klonopin. I've gotten much of the fatigue I use to get from it done with now that I take 1mg 3x/day, but simply not having anxiety can help me sleep I suppose.
The Sleep neuro said not sleeping during my EEG isn't too odd, since the stress of the scanning and all can do that, plus because I'm 19 he said I would be more resillent and able to fight sleep easier. One of those docs who knew what he was doing attitude, talked fasted, straight-forward, and was basically like "so you'll get this test and we'll see you later"
Posted by Snoozy on April 29, 2003, at 21:43:00
In reply to Re: Sleep and sleep test, posted by utopizen on April 29, 2003, at 16:47:38
Glad to hear things are moving on the sleep study front. Although I don't know why on earth you wouldn't want to sleep with a CPAP machine ;)
This may not apply to you, but a friend of mine had a sleep study done last summer. I spent a couple of hours helping her get the glue out from her hair. She said she wished they had warned her about that.
I think they want you to take your regular medications because they're trying to get a picture of what's going on. If you were to not take any Klonopin, for instance, that would probably have an effect on your sleep during the test. They won't find out what your patterns are "naturally", but if you changed your meds that would be even more unnatural and different from your norm. In a sense, they are testing your natural sleep patterns - you'll be doing the same things/taking the same things as you always do. I hope that makes some kind of sense.
Good luck and I hope the ENT doesn't find anything (that would be good news - right?)
> Just saw my sleep neuro for the first time today. He said he wanted me to do an all-night sleep study. It'll be in a couple of weeks.
>
> I asked the nurse practioner if they ruled out apnea, RLS (who could have RLS without knowing it??) and others, if they would continue to see me for what's called "idiosyncratic excessive daytime sleepiness" (fatigue during the day that sleep tests can't account for).
>
> She said no, I'd be referred to the sleep hygienist in the same sleep disorders clinic I go to now. I'm actually hoping they rule out apnea and everything, because they said they don't favor surgery and instead suggest CPAP machines. No way.
>
> But if I just have unexplained EDS, I can try for some Xyrem. I've heard GHB users claim they use to get tired after 9 1/2 hours of sleep, but after taking GHB at night they can continously feel refreshed after 5-6 hours. GHB induces deeper delta (?) wave sleep, which is the most restorative part and necessary for vital functions like insulin regulation, immunity, etc. and secretes more growth hormone in this phase that makes these things happen.
>
> It's good I'm in the phase of getting tested and all that, because it's likely they'll rule a bunch of stuff out (I'm guessing) and send me over to a sleep hygienist in the clinic. And she can just rely on tests already done.
>
> They said the sleep study would be all night, and then if I had apnea they'd give me another one to adjust the machine. Um, I'm in college though, really would hope to avoid looking like I'm an 80 year old smoker in the hospital everytime I go to sleep. I'm guessing they don't make CPAP machines that are designed by Porsche or someone, but I've never seen one.
>
> 170 lbs., 6'3'', scrony, but it's still possible they said. My roommate said he never has heard me gasp in my sleep, but I do snore a few times a week. I'm actually seeing an ENT who specializes in snoring in a week too, just to get that ball rolling. Don't want to be snoring when I have a girlfriend.
>
> I feel VERY energetic, refreshed for an hour to two hours when I wake up after 9 hours of sleep, or a 2 hour nap. But then one minute later I'm tired for the rest of the day. WIsh I could feel refreshed all day long. Napping for 2 hours a day is almost mandatory, but it's also impossible while I'm on a stimulant for ADD.
>
> I'd rather feel refreshed from sleeping well than masking things with a higher dose than what I take now of Desoxyn. It's not the same feeling. I also don't feel like I want to eat, but feel crappy over this at the same time. It justs masks needs my body has, and I don't feel comfortable with that. Feeling refreshed after a 2 hour nap is incredible to wake up to, I love it. If I felt refreshed like that all day, I'd do so much more, be so much more happy (although I never get depressed).
>
> Looks like even if I do get Xyrem, it won't be for probably 6 months by the time studies are done, re--requested (possible) and then having to eventually switch to the sleep hygienist there, which may or may not favor Xyrem.
>
> The weird thing is to me is that they told me to take my meds just as I would normally the day of the test. So that means my beta blocker and Klonopin for anxiety, my Desoxyn (methamphetamine) for ADHD, and Evoxac for dry mouth.
>
> Unfortunately this won't help me find out what my patterns are like naturally, but I guess they know best. The good news is I shouldn't have trouble falling asleep on Klonopin. I've gotten much of the fatigue I use to get from it done with now that I take 1mg 3x/day, but simply not having anxiety can help me sleep I suppose.
>
> The Sleep neuro said not sleeping during my EEG isn't too odd, since the stress of the scanning and all can do that, plus because I'm 19 he said I would be more resillent and able to fight sleep easier. One of those docs who knew what he was doing attitude, talked fasted, straight-forward, and was basically like "so you'll get this test and we'll see you later"
>
Posted by Ritch on April 29, 2003, at 23:20:42
In reply to Anyone have a sleep-deprived EEG?, posted by utopizen on April 28, 2003, at 21:45:53
> I just had one this morning. Even thought I didn't sleep all night like a good patient, I only got "drowsy" they said during the scan. Of course, I wanted to sleep right after it was all over! If the doc says he wants another one, next time I'm scheduling it for 11am (I think they do that) because I tend to get a rush of energy in the AM after being sleep deprived until closer to noon time.
>
> Anyway, so the nurse said the purpose of it is to collect so much info, it wasn't such a big deal I didn't enter deep sleep, and it was up to the doctor to decide if I need a re-test.
>
> I took it because my neuro, who I saw for the first time, gave me an exam after I complained of getting a shoulder shrug-like tic every so often (1-3x/day) for a second. She diagnosed me with myoclonic jerk (or tic?)
> and said it's due to REM patterns being off, so hence ordered the EEG and referred me to the sleep disorder neuro next door.
>
> I told her I take Desoxyn (methamphetamine) but I'm still tired during the day, even with 9 1/2 hrs of sleep. I feel refereshed for an hour to an an hour and 1/2 after waking, but after that I'm tired unless I nap for 2 hours, which results in just another hour of feeling refreshed.
>
> She said Provigil or Xyrem could help, but I guess I need a sleep study first, who knows. Seems like I may also have to do another EEG possibly, and either one takes months to get booked for. So basically, I won't get helped for this fatigue issue for quite some time, because they don't want to give you the Xyrem until they feel they know how you are normally I guess.I think there are two different tests. One is a *polysomnogram* where you try to sleep normally, taking all your usual meds, going to sleep at the same time, etc, mainly looking for sleep apnea, etc., and there is the sleep-deprived EEG. The neuro I saw wanted me to do one of those. I was supposed to stay up all night without sleeping and without taking any meds PRIOR to the test. Then I would come in to the office the following day (after no sleep the night before), and get all of the electrodes attached with a portable EEG recorder. Then I would go home and record everything I did in a diary (what and when), and that evening go to sleep as usual and let the recorder run through my sleep (having being deprived of sleep one night beforehand). The following morning, I was supposed to come back in after sleeping and get the electrodes and recorder removed. Does your neuro want you to do that one too?
Posted by utopizen on April 29, 2003, at 23:57:53
In reply to Re: Anyone have a sleep-deprived EEG? » utopizen, posted by Ritch on April 29, 2003, at 23:20:42
Does your neuro want you to do that one too?
The sleep neuro I saw today ordered me an all-night study, where I take my meds as usual the day of it and go in at night. The EEG is still being looked at.
It's to rule out apnea and other disorders. I think I'll end up having excessive daytime sleepiness without a cause they can find, and wind up with Xyrem.
This is the end of the thread.
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