Narcolepsy & Apnea

Hi - I know I have Narcolepsy and due to a different health problem I had massive weight gain and while at my first sleep study I had some problems breathing it wasn't bad enough for CPAP. The next sleep study (after the weight gain) I was much worse and they said I should consider a CPAP but I thought it wouldn't make any difference because I was already gonna be tired from the narcolepsy. I have an appointment today at Mayo and maybe a sleep study tonight depending on how the appointment goes. Does anyone have Narcolepsy and a CPAP and if so how does it work for you.

I have both narcolepsy and sleep apnea. The CPAP definitely helps, but you are right that it doesn't do anything for sleep attacks (related to narcolepsy) or cataplexy. I also have to do things like keep a very consistent bedtime and take short naps during the day. I also take a small dose of ritalin plus some green tea (which contains caffeine). My doctor has been wanting me to try Xyrem to get better sleep at night, but I've decided against it. I think it is too dangerous for someone with apnea. Thankfully the cataplexy I experience is mild and infrequent.

Oh, when I say the CPAP helps, I mean that before using it I was constantly tired or falling asleep and completely dysfunctional. Now I have 2-4 hour periods where I'm well awake and can function. It usually is broken by a sleep attack which lasts 10-20 minutes then I'm fine again for a few hours. Before CPAP I never had any of those periods where I wasn't tired, ever. So yeah it does help. So does the Ritalin tho too. I guess now that I think about it, even using the CPAP I still had a lot of microsleeps and sleep attacks during the day and that finally prompted me to go back to the sleep doctor for more tests and then trying stimulants.

But jnk makes a good point too. Your oxygen goes down when you have apneas during the night. That is really bad for your body and brain so for that reason alone you should use the CPAP.

I do not have narcolepsy, but my gut (and I do have one) reaction to the question is to say that you should not let the fact that you have been diagnosed with narcolepsy be an excuse for allowing yourself to be strangled every night.

Breathing is important. Always. Doing all we can to keep our sleep as effective as possible is important. Always. Obstructive sleep apnea (OSA) is much more than feeling tired during the day. It is a form of sleep disordered breathing (SDB). Treating OSA allows oxygen to get to your organs at night and helps to make the sleep you get more healing to your body and mind. Not to mention that losing weight is more difficult when your sleep is disrupted by OSA.

jeff

thanks - I was thinking what you both said but sometimes it helps to have outside opinions that match.

with regards to meds - i totally refused to take GHB and so am on Provigil. I get 100mg pills and take them 30 minutes apart. The multiple smaller doses totally fixed the all the nasty side effects that I was getting from taking the provigil. I love provigil because it doesn't make me stay awake at night and I don't fell like I am high on something all day like I did with the adderall (i have bad spelling, lol).

If I get a CPAP I will totally officially join these forums because the members are helpful and respectful. Thank all of you for not making this wonderful resource just another whiny people with bad attitudes board.

Annie N wrote:. . . the members are helpful and respectful. Thank all of you for not making this wonderful resource just another whiny people with bad attitudes board.

I think you just caught us on a good day.

But PLEASE do come back and sign up. Don't forget the yellow lightbulb of wisdom, above, and the search function works well on this board. Beginning the CPAP education before you are in the thick of it can be a good thing. I wish I had started earlier, myself, anyway.

jeff

I am uncertain whether I have narcolepsy or not. My sleep study indicates that I MAY since I went into REM sleep about 3 times faster than normal people usually would.

The sleep center thinks that it may be due to years of untreated apnea causing my body to adjust itself to get as much restful sleep as I could.

After almost 6 months of cpap ... I am still sleepy during the day and can take naps and fall asleep anytime. I don't have "attacks" but I'm just sleepy a lot.

I did some reading on narcolepsy and I'm very skeptical about taking meds for it.

Still sitting on the fence.