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Saw sleep doc about mslt


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Okay so I had my sleep study with mslt in november. At the time they decided not to take me off of my medications. The nighttime was fairly normal, aside from me falling asleep in 2 minutes.

The mslt was very abnormal.

(SSorry if I have said this already, I'm currently in withdrawls from lithium and wonder how I know my name!)

I fell asleep on average 1.3 minutes and I had remdreams in 2/5 naps.

Doc said I met the requirements for narcolepsy but the fact that I was on medication, we'll that was the only thing tainting that. He said he, personally, is convinced that I do have narcolepsy. His concern with doing a second mslt though was whether or not medicaid would cover xyrem and he does not believe it will. He said xyrem is the only difference in the treatment of the two disorders.

He also said you do not have cataplexy as far as we are aware yet. In that moment I was struggling to recount a couple of instances where I started out being just sleepy in the office and decided to walk home and lay down. My husband walked with me when suddenly my legs felt weak and I collapsed and he caught me. He had to walk me the rest of the way because I felt weak. This happened a couple times but it was not caused by emotions. Is that still cataplexy?

anyways, I didn't make it past the first sentence of my explanation because Iam in that scatter brained confused and can't remember jack state. I was hoping it would help him help me.

Would it be a good idea to write it down and note it as being what I was  trying to tell him?

Next, he game me samples of nuvigil. Take 1/2 for 2 days then whole. I overheard him say " if this works it's narcolepsy". Does nuvigil only work for narcolepsy then?

 

Needless to say I am loaded with questions I think....and I have no clue if anything I said Makes sense...it is quite the roller-coaster right now.

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7 hours ago, Rabidtears said:

Doc said I met the requirements for narcolepsy but the fact that I was on medication, we'll that was the only thing tainting that.

I can really relate to this ... Same thing happened to me.  Exact same thing.  And he couldn't diagnose me with narcolepsy unless I was off all meds for 2 weeks before the sleep study.  I just couldn't risk being off of meds for that long.

How are doing with the weaning off of the meds?

7 hours ago, Rabidtears said:

Would it be a good idea to write it down and note it as being what I was  trying to tell him?

Yes, definitely write it down.  I find that helpful when I do it, so I don't leave any of the details out or lose my train of thought while at the appt.

7 hours ago, Rabidtears said:

Next, he game me samples of nuvigil. Take 1/2 for 2 days then whole. I overheard him say " if this works it's narcolepsy". Does nuvigil only work for narcolepsy then?

I think it is also prescribed for shift work disorder and sleep apnea also.

 

For off-label prescribing:

Does this help?

http://www.caremark.com/portal/asset/FEP_Rationale_ProvigilNuvigil.pdf

It talks about modafinil also because that and modafinil are very similar.  I think it was a helpful article to read, for me too.  Short too, easy read.

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

https://nootriment.com/nuvigil-prescription/

Quote

It is used off-label to decrease or eliminate jet lag, decrease overall fatigue, treat symptoms of ADHD and ADD and in some users, to elevate mood.

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

And yes, you are making sense :)

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Thank you for your response melisaw! For the weaning so far the only thing I'm not taking is lithium and that is because the sleep study was so close and I had already been a week without. I've only had 1 cup of coffee today and no other caffeine so I don't feel.....triggered? Yesterday and the day before were rough though.

 

The article was very very helpful! I can now understand better why he said that. So far it is working.

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50 minutes ago, Rabidtears said:

Thank you for your response melisaw! For the weaning so far the only thing I'm not taking is lithium and that is because the sleep study was so close and I had already been a week without. I've only had 1 cup of coffee today and no other caffeine so I don't feel.....triggered? Yesterday and the day before were rough though.

 

The article was very very helpful! I can now understand better why he said that. So far it is working.

You're welcome ... I'm glad the article was helpful and that is working for you!

When is your sleep study after you go off all meds for it? (I think you wrote in another post you said in 2 weeks?)  I am not sure for you but my neuro told me I had to be off meds for 2 weeks before the sleep study ... ie ... wean off all, wait 2 weeks, then have the sleep study. 

I think it is so crazy that in order to diagnose narcolepsy a person needs to be off of meds before the sleep study ... I can see why maybe be off the modafinil (for me) or nuvigil (for you) for 2 weeks, but not all meds.

 

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