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Hi all. I am a 24 yo female with BP2 and was dx with narcolepsy after an MSLT sleep test. I had the MSLT because I was having frequent sleep paralysis (multiple times a week), excessive daytime sleepiness, and the need to nap multiple times a day, which I called "sleep attacks". Another symptom is I was hearing voices only when falling asleep, frequently. I would also have auditory, visual, and tactile(!!!) hallucinations during episodes of SP. i was given nuvigil, and my sleep doc wanted to start my on Xyrem (GHB) along with the daily adderall I was already on. I think I was on Effexor at the time too, maybe. 

I stopped the nuvigil a couple days after starting  

Fast forward 2 years later, and my SP symptoms were completely gone, although I still suffered from EDS (sleep attacks mostly subsided). The voices were sporadic. 

I went for a sleep study in 2016 which was inconclusive (not narcolepsy). 

Im confused, do I not have narcolepsy anymore? I had symptoms and a sleep study that confirmed in 2013

i still snore like a truck and cough/gasp in my sleep but neither test showed apnea. 

Anyone have similar experience or have input??

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1 hour ago, jordansonfleek said:

I went for a sleep study in 2016 which was inconclusive (not narcolepsy). 

Im confused, do I not have narcolepsy anymore? I had symptoms and a sleep study that confirmed in 2013

-Were you off all meds for at least 2 weeks right before the sleep study was done?

-You still may have narcolepsy, but if, for example, you didn't go off meds for it, it probably wouldn't come back with narcolepsy results.

 

http://healthysleep.med.harvard.edu/narcolepsy/diagnosing-narcolepsy/narcolepsy-testing

Quote

Preparing for sleep tests
The polysomnogram and MSLT can be disrupted by a variety of factors, so it is important to get clear instructions on how to prepare for these tests.

A doctor will usually recommend that a patient stop, one to three weeks prior to the tests, any medications that can affect the brain. This is especially important for medications used to treat depression, drugs that increase alertness, and drugs that have the potential for abuse or addiction, such as amphetamines or cocaine.

 

Quoted below (same link as above), I also had the hypocretin test done (explained below) ... a spinal tap that shows how much hypocretin is in the spinal fluid.  When Stanford was doing a study on it, neuro did the tap and then took blood and everything went to Stanford.  Results came back negative.  So I think that was when the hypersomnia came into play.

Quote

Occasionally a doctor may recommend checking the level of hypocretin-1 in the spinal fluid. This test is very specific for narcolepsy, as hypocretin levels are low in almost no other condition. The test requires a lumbar puncture (spinal tap) to collect the fluid, and can make the diagnosis much clearer in some children, in adults who have unusual cataplexy, and in anyone who cannot discontinue medications that interfere with the MSLT.

---------------

My neuro wanted to test me for narcolepsy but said in order to do it I had to be off all meds for at least 2 weeks.  Which I couldn't do.

I am treated for hypersomnia (or something related), and am on provigil for it.

2 hours ago, jordansonfleek said:

I stopped the nuvigil a couple days after starting  

Why did you stop taking it?

 

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I was not completely off all meds for 2 weeks either time, that's not a possibility given my mental dxs hahaha. Guess I'll never know.

I stopped back in 2013 because dry mouth and the bad taste. Occasionally I'll take it now and then, but I usually don't because a) I don't kknow if I even have N and b) I only like to take meds that I know are vital and I function pretty well without it.

Knock on wood, the sxs have not been impairing my functioning so I don't see the need to treat them :)

Edited by jordansonfleek
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42 minutes ago, jordansonfleek said:

Occasionally I'll take it now and then

That is probably why it isn't effective ... because you do not take it every day.  Glad you can function without it.

 

Are you seeing a psychiatrist (pdoc)? 

3 hours ago, jordansonfleek said:

I am a 24 yo female with BP2

Are you on meds to help with the bipolar?

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1 hour ago, melissaw72 said:

ABOVE POST:   I DID NOT write what is written in that quote.  Those are NOT my words.  They are the words of @jordansonfleek answering the questions I asked in my last post.

Sorry!!! I am still getting used to this site/message boards!!!

 

I am seeing a pdoc and I am on 3 for bipolar :)

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It is ok ... it is just that it has happened before and the person wrote stuff that I was totally against (or something like that ... something I completely didn't agree with.  I just didn't want it to happen again.

I'm glad you are on meds for the BP and that you are stable! :)

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