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NARCOLEPSY ?
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Kate Offline

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Post: #1
Ohmy NARCOLEPSY ?
Because I was still tired after using CPAP, it was suggested on this forum that I go to a neurologist, so I went to a sleep disorder doctor that is a neurologist. He felt that I have narcolepsy. So he recommend that I have another sleep study with an MSLT test (usually 5 naps in a day that are recorded like an over night sleep study). Yesterday, I had the study. I had taken 4 naps and then they said that I didn't need another. Why did they do that? Does it mean that they had recorded enough for a diagnosis of narcolepsy or did it mean something else?

None of the stimulants that my doctor has tried have worked or I've have a bad reaction. I've tried Provigel, Adderal, Conserta 36, Rittalin. When the doctor said thatI might have narcolepsy, he mentioned GHB. I Googled it when I got home and when I read discovered it was the Date Rape Drug and everything that you have to do to get it, I freaked. I really don't want to use it.

Kate

:Using cpap then vpap since Feb.2013,
Kate
12-04-2013 07:05 PM
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zonk Offline

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Post: #2
RE: ? NARCOLEPSY ?
Hi Kate welcome to the forum
On the question: Can you have OSA and Narcolepsy at the same time?
Read here: http://www.apneaboard.com/forums/Thread-...-same-time

How long been using CPAP and have you been checking the data on the screen and the software (profile shows you,re using ResScan)
Sometimes (not always) sleepiness during the day might be an indication that the therapy is not optimal yet

I think might help to followup with sleep physician specialize in sleep medicine (not neurologist)
12-04-2013 07:57 PM
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sir_sleeps_alot Offline

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Post: #3
RE: ? NARCOLEPSY ?
I would imagine that they said you didn't need another nap because they got the information they needed from the first four. This could mean they have enough info to diagnose you with narcolepsy, but it could just as easily mean that they had enough info to rule it out. If you want to know what it means, you'll have to call your doctor and ask because we can't tell you that.

Sodium oxybate ("GHB") is only the "date rape drug" when it's being used for date rape. When sodium oxybate is used to treat narcolepsy, it's called Xyrem. Nobody will ever force you to take Xyrem. If your doctor gives a prescription for it, all you have to do is not fill it. In addition to Xyrem, other medications used to treat narcolepsy include SSRI medications, SNRI medications, stimulants and tricyclic antidepressants.

I would encourage you to keep an open mind about Xyrem. There's a HUGE difference between buying GHB illegally and using it to sexually assult someone and taking a medication that prescribed for you by a doctor to treat a serious medical condition. If you do end up having narcolepsy, it could give you a quality of life you wouldn't otherwise be able to have.

I know the waiting is hard, but jumping to conclusion isn't going to do any good except freak you out more. Hang in there!

SSA

(Edited to fix typos)


(12-04-2013 07:05 PM)Kate Wrote:  Because I was still tired after using CPAP, it was suggested on this forum that I go to a neurologist, so I went to a sleep disorder doctor that is a neurologist. He felt that I have narcolepsy. So he recommend that I have another sleep study with an MSLT test (usually 5 naps in a day that are recorded like an over night sleep study). Yesterday, I had the study. I had taken 4 naps and then they said that I didn't need another. Why did they do that? Does it mean that they had recorded enough for a diagnosis of narcolepsy or did it mean something else?

None of the stimulants that my doctor has tried have worked or I've have a bad reaction. I've tried Provigel, Adderal, Conserta 36, Rittalin. When the doctor said thatI might have narcolepsy, he mentioned GHB. I Googled it when I got home and when I read discovered it was the Date Rape Drug and everything that you have to do to get it, I freaked. I really don't want to use it.

Kate
(This post was last modified: 12-04-2013 08:08 PM by sir_sleeps_alot.)
12-04-2013 08:05 PM
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trish6hundred Online

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Post: #4
RE: ? NARCOLEPSY ?
Hi Kate,
WELCOME to the forum.!
Hang in there for more answers to your question.

trish6hundred
12-04-2013 08:06 PM
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PaulaO2 Offline
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Post: #5
RE: ? NARCOLEPSY ?
I did a quick read of a few articles and all of them said something along the lines of "the MSLT consists of 4 to 5 short naps 2 hrs apart". So just doing 4 could mean nothing.

If nothing else, you are doing everything you can to take care of yourself. You should take pride in that!

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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
12-04-2013 08:10 PM
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DocWils Offline

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Post: #6
RE: ? NARCOLEPSY ?
Relax - they collected the necessary data, that was all. They will now analyse it and forward the report to your doctor. There is nothing in their stopping at 4 to indicate to you that they made either a positive or negative diagnosis (negative is what you want, btw - we use the terms differently). So just wait for your doc to get back to you. It takes a bit of time to make the full analysis of the data and write the report.
12-04-2013 08:19 PM
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me50 Offline

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Post: #7
RE: ? NARCOLEPSY ?
I agree that it takes time to get the results. My first 2 sleep studies I got in a few days from medical records but the one I am about to have told me it could be 2 to 3 weeks before I get my results.
(This post was last modified: 12-04-2013 10:25 PM by me50.)
12-04-2013 08:25 PM
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Kate Offline

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Post: #8
RE: ? NARCOLEPSY ?
Zonk,

The doctor that I saw was a Sleep Disorder specialist who has a degree in Neurology. Someone on this forum told me that a sleep specialist has either a medical degree in pulmanology or neurology. I saw a pulmonologist who was a sleep disorder specialist, a year ago, who put me on CPAP. I was registered on this forum a year ago, when I was seeing that doctor. I was unable to get on this site, so I registered again under another name.

I was still having trouble and the doctor would not give me the results of my sleep study or my prescription for my CPAP, would not read one of my test after two months, and wouldn't reply o my calls. This forum said that I should try a sleep specialist that was also a neurologist and I did.

DocWills,

How did you get your sleep studies from medical records? Oh, I think I figured it out. You're a doctor and you have access to medical records in the hospital. Darn, I had hoped to be able to read my test.

All of the replies were very helpful and I want to thank you all very much for answering so soon.

Kate

:Using cpap then vpap since Feb.2013,
Kate
12-04-2013 09:58 PM
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me50 Offline

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Post: #9
RE: ? NARCOLEPSY ?
you are entitled to have your sleep study results..........every word written about that sleep study, even if it mentions that you blew your nose, etc. If you got the sleep study in the hospital, go to the hospital's medical records department with your photo id and request it. If you had it at a sleep study center independent of a hospital, go there and get the test. They have to give it to you. your doctor is supposed to give it to you as well. And, you are supposed to get the prescription copy as well. Hope this helps.
12-04-2013 10:24 PM
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PaulaO2 Offline
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Post: #10
RE: ? NARCOLEPSY ?
Yes, you should be able to get the copy of your sleep studies. All you have to do is ask. If you live in the US, they cannot deny them to you. They may say "it contains data you won't understand" but that's okay. They may say "it is fifteen pages long" but that's fine too. You can ask for the summary or you can ask for the entire thing. It's YOUR record.

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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
12-05-2013 12:06 AM
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