OSA and narcolepsy

Anyone have both diagnoses? I'm just curious how it all works. I can't really tell that I feel any better since starting CPAP about 8 months ago. I've gained weight especially in the middle, Any ad vice from anyone? Thanks so much.

Hello and welcome. There are some people on the board who are also diagnosed with narcolepsy. I am not (although it seems suspect). Hopefully those with narcolepsy will see this and weigh in. When there are other diagnoses that have symptom overlap it can be hard to pinpoint where the problems lie. For me, my Periodic Limb Movement Disorder also contributed to my daytime sleepiness. My approach, once I was on CPAP and became aware one could use nightly machine data to confirm treatment was indeed therapeutic, was to focus on optimizing and stabilizing my CPAP treatment, then see what symptoms remained. Turned out I was also having side effects from several meds, so it took a while to methodically address the issues. I can just suggest that you take a similar approach and start with a good look at your data if you have a data capable machine.

Double Dx wrote:Anyone have both diagnoses?

Not me.

I'm just curious how it all works.

Not sure what you mean.

I can't really tell that I feel any better since starting CPAP about 8 months ago.

Do you mean that you are still tired?

I've gained weight especially in the middle,

Not sure what that would have to do with either diagnosis, although it certainly can't be helping your apnea.

Any ad vice from anyone? Thanks so much.

Could you be more specific? Other than kteague's advice to make sure your OSA treatment is optimized, we'd need more specific questions to respond to.

In the meantime, here's some unsolicited advice that may be completely irrelevant (or not)... Do you have cataplexy? If you don't, you still could have narcolepsy; however, how did they diagnosis it? If they diagnosed it purely based on REM onset during naps on an MSLT, if the MSLT was done following a night of untreated OSA, I would say that diagnosis is tentative at best. Anyone with an untreated sleep disorder could go into REM on a nap on an MSLT. So there'd have to be more than that.

Are you being treated with stimulants/wake-promoting agents?

Yes, I have been diagnosed with sleep apnea and narcolepsy.
I first had a overnight study and was diagnosed with sleep apnea AHI 23 and had fragment sleep even with CPAP therapy. This was noticed on my titration study by my doctor. I used CPAP faithfully for 3 months and still had excessive daytime sleepiness so I stop using machine.
A year later and different doctor had another over night sleep study and my first MSLT. Diagnosed with sleep apnea and narcolepsy. Doctor prescribed stimulants and Zyrem and CPAP. I had a hard time believing the narcolepsy diagnoses since the only symptom is excessive daytime sleepiness. The meds made me feel like a total dummy, forgetful and felt like I was in slow motion.
I just had 3rd sleep study and MSLT and same diagnoses sleep apnea and narcolepsy. I still don't understand, I am a 47 female and have always been very active. I hate all of this even using CPAP and taking Nuvigil now I still can sleep 18 hours a day.
PLEASE can anybody relate? I feel like I am becoming disabled because of my sleepiness and my forgetful mind!

Sleepyme

Were any of your MSLTs done following a night in which you used CPAP (and had been using it prior to that so it wasn't like your first time on it) AND slept at least 6 hours that night prior to the MSLT?

Yes, with both of the MSLT's I slept with CPAP and on the the last study I slept 6.5 hours and ahi was a 1. I used CPAP average 4.5 hours nightly for 10 weeks prior to study. I did not sleep more than 5 hours when I was on Zyrem ( that is why only 5 hours ).
I now wake up feeling really bad and have to push myself to do anything and on weekends all I is sleep.

Thanks
Sleepyme

Several things are interesting with your post. First, although you used CPAP you were only using 4.5 hours a night (which I know meets medicare compliance rules ) however Terri Weaver's study revealed that while 4 hours on CPAP may be enough to improve subjective sleepiness, generally at least 6 hours are needed to improve objective sleepiness. So its possible that your MSLT could be a false positive. Did you have SOREMP on the MSLT or just a short mean sleep latency time. Secondly, you report that you spend all day on the weekends sleeping. This makes me question what your sleep/wake schedule would be. I would keep sleep log and ensure that there is not anything else such as insomnia or a circadian rhythm issue you are dealing with. IF you truly had OSA and Narcolepsy without Cataplexy then I am not sure if Xyrem would necessarily be a choice of mine. Stimulants can help but its a lot more hit/miss than in patients iwth Narcolepsy with Cataplexy. Also, not sure what other medications you are on and if those have been reviewed as many medications can be sedating vs stimulating.

I only slept 4 to 5 hours because I was taking the Xyrem and that is all I could sleep at night
Before my last sleep study my new doctor weaned me off of Zyrem, Adderaiel, and Cymbalta weeks before my sleep study.
I had 2 SOREM'S with the 1st MSlT and 3 on the second.
I agree with you about prescribing Xyrem and having sleep apnea, however this is what he prescribed. I was on it daily for 9 months.
I know that all of this does not make sense and my doctor was surprised with the narcolepsy diagnoses as well. She was leaning ideopathic hypersomnia diagnoses.
My schedule is very active, I teach elementary students and I work at least 50 hours weekly. I have only been sleeping on the weekends since I have been on Nuvigil and off of Xyrem.
Any thoughts I really appreciate!!

Sleepyme

I was diagnosed about 6 years ago with Narcolepsy. This was done with an MSLT. At that time, the Dr. was more concerned with the narcolepsy than the mils OSA that was found at that time. I started taking Provigil 200 Mg. daily at that time and still do. I have been feeling increasingly more tired over the last year or so, got a pacemaker put it, so I ended up with another sleep study last December. I've been using CPAP then. I was taken off of the Provigil because of my blood pressure, and I could hardly make it through the morning. I started taking it again (found someone who would give it to me). I'm still tired all of the time. I thought that using CPAP was supposed to make you feel amazing, but I can't tell any difference, really. I have gained weight (mostly around the middle). I'm just disappointed in the whole thing.
Some of you talk about all of these numbers that I don't understand. I think it has something to do with information that you get from the machine, but I don't know how to go about getting any of that information. Thank you for your replies.

sleepyme1964 wrote:Yes, with both of the MSLT's I slept with CPAP and on the the last study I slept 6.5 hours and ahi was a 1. I used CPAP average 4.5 hours nightly for 10 weeks prior to study.

Did you only sleep 5 hours each night leading up to the sleep studies (even if you slept 6.5 the night before)?

I did not sleep more than 5 hours when I was on Zyrem ( that is why only 5 hours ).

My understanding is that Xyrem only lasts 4 hours, and that you have to set an alarm clock to re-dose yourself during the night. Is that not your understanding?

I now wake up feeling really bad and have to push myself to do anything and on weekends all I is sleep.

What do you mean "now"? Are you using CPAP? How many hours are you sleeping?

The meds made me feel like a total dummy, forgetful and felt like I was in slow motion.

Are you talking about the stimulants, like Adderall?

Double Dx wrote: I started taking Provigil 200 Mg. daily at that time and still do.

Do you feel better within an hour or so of taking the Provigil, but it doesn't last through the day, or you feel just as tired whether you take it or don't take it? I'm asking because my own experience with Provigil is that it only lasts 3-4 hours (but I'm a rapid metabolizer). Also, 200mg is not an incredibly high dose for someone who is pretty tired.

Some of you talk about all of these numbers that I don't understand. I think it has something to do with information that you get from the machine, but I don't know how to go about getting any of that information. Thank you for your replies.

Start a new thread about this, but first go into your profile and add the equipment you are using. People will be able to tell you whether your machine yields data (other than # of hours of use).