4 replies to this topic

[purpley]

Hi all! I've been lurking for a few days and reading about narcolepsy, and I'm slapping myself on the forehead (virtually) for never thinking of it before. I have the same excuse as many of you, from what I see, which is that I've been treated for ADHD since college -- not a recent event, mind you -- and stimulants significantly reduce the daytime sleepiness. The funny thing is that when I started taking a stimulant I recognized immediately that I was suddenly able to stay awake in class instead of falling asleep at least 75% of the time. But, since I knew I was getting enough hours of sleep at night and had no "excuse" for being so sleepy, I decided that I'd been falling asleep because I couldn't concentrate from ADHD and was bored! Even on meds, though, my "ability" to take a nap no matter where I am -- which I can easily see now are sleep attacks, not a talent -- is legendary in my family.

My question is, have any of you done a sleep study where the doc let you stay on some meds, or where you were allowed to stay on meds until just a couple of days beforehand? I can give up the Adderall and take frequent naps for a little while, and give up the tricyclic I take for sleep, but I also take Effexor for depression and anxiety. It would take a few weeks just to taper off Effexor comfortably, and I also relapse after about a month into depression whenever I've been off all antidepressants or on too low a dose, so I'll be pretty nervous if I have to stop it for two weeks.

I know I should just get a referral and ask the sleep doc myself, but since I'm nervous about doing that I thought I'd ask you guys first. Thanks!

[tdmom]

Different Drs have different policies, as much as it seems like it should be standard. You may get an answer here and then your Dr may give you a different answer. While you are waiting here for an answer I would work on your referral. It often can take a long time to get an appointment and then longer to schedule the test. You might also check out the FB narcolepsy network page as it seems a lot of people are there these days and not checking here as often.

I know I should just get a referral and ask the sleep doc myself, but since I'm nervous about doing that I thought I'd ask you guys first. Thanks!

[LauraL]

It took about three months from the time I initiated the referral to the day of the sleep study--so definitely what tdmom said--start as soon as you can. My doctor had me stay on my regular medication routine for the test--which at the time was celexa for OCD/depression, and wellbutrin for depression. At the time, they thought I had sleep apnea, though. When the sleep apnea was negative, I transferred from the pulmonologist I'd been assigned to, to a neurologist. She decided to just do a medication trial and error to get my symptoms under control, without doing another sleep test. It means I don't have a definitive diagnosis, but she thought that wasn't important enough to justify having me stop all of my meds for another sleep study, if we could figure out the correct dosage of medication to keep me awake and functional. Fortunately, the first medication worked well, and we found my ideal dose quickly.

I would eventually like to do a medication-free sleep study to get a definitive diagnosis, but not anytime soon. I'm finally feeling functional for the first time in about nine months, so I'll take it!!

[purpley]

It often can take a long time to get an appointment and then longer to schedule the test.

It took about three months from the time I initiated the referral to the day of the sleep study--so definitely what tdmom said--start as soon as you can.

Yikes -- not to mention the sleep doc will probably ask for a formal referral from my primary care doc or psychiatrist, even though my insurance doesn't require it. So thanks, I'll call right away. I guess I'm lucky because at least if the doc wants me off all meds for an extended period before the sleep test and I decide not to take that chance with my mood, I'll still be able to get my Adderall for the ADHD.

[Swifty]

I've taken way too many sleep studies. One of them i had to stay on my medication to see if i was still able to fall asleep. I think it just depends on your doctor and what type of sleep study he/she wants you to take.

I like how you reffered to taking a nap anywhere at any time a talent. I know some think its a talent. I can do the same thing. I call it sleeping on command. I tell my buddies its the cross I bear.