anybody have both apnea and narcolepsy?

Sorry I'm late to the party, story of my life I guess. Yes I have both. Don't really have any feedback for you, I've stopped all drugs due to intolerable side effects. I've also had to give up driving. I'm still hoping I can work, but just quit a job because it was too dangerous for me. I have frequent microsleeps and sleep attacks. I also have cataplexy. It's very frustrating. I thought my sleep problems were over when I got on CPAP but not even close. I still love the CPAP machine, though. It has given me a lot more days or parts of days where I feel better than I ever have in my life. I wouldn't sleep without it even though I'm still disabled from sleep disorders.

Angeline wrote:I've tried to read the archives but haven't found if there is anyone who has two sleep disorders at the same time? I have OSA with Narcolepsy w/cataplexy. Does anybody out there have this dreaded combination? Or know anybody that goes through what I go through? Any feedback would be welcome....

Angeline

I was diagnosed with narcolepsy 13 years ago. I suspect I had it before then but I thought I was just tired. I went through the night study and then the nap study. At the time, really had no other symptoms then EDS. Maybe had had hypnagogic hallucinations once or twice but really wasn't sure. Years later, finding my sleepiness was worsening, I went through another sleep study. At that time, was diagnosed with sleep apea, but it was mild and I decided against cpap in favor of trying to lose some weight. Last year, I went through another study, again due to increasing sleepiness. Still had the same degree of apnea, this time opting for cpap, but still can't tell much difference. Since original diagnosis of narcolepsy, have developed mild cataplexy, and still have occasional hallucinations. Never had sleep paralysis that I can recall. It really is a curse, with which I find much humor in because you just have to laugh sometimes not to cry. And it is kinda funny, except when it's dangerous. A CURSE!!!!!! And I never feel rested - EVER!!!!!

If it's all such a curse, are you getting treated?

Losing weight generally does NOT make apnea go away, or Cpap unnecessary, btw, but narcolepsy can be very serious too and if you're not getting help, why not register here as a member, present some specifics in a note, especially what about therapy is difficult, and maybe we can help.

Agreed, it is a curse. There's nothing funny about narcolepsy. I feel rested for a brief period in the morning, but it only lasts a few hours at best. Sometimes I don't even get that much. The meds used to treat it are HARSH. I can't tolerate them well so I don't take much of them. I doubt you will find many people who really understand here since this forum is for sleep apnea and most people here are well treated with their CPAP. We are the unlucky ones, having co-morbid sleep disorders (and other medical conditions) that make it (CPAP) helpful but not anywhere near the miracle that others with just sleep apnea have.

reddyleigh wrote:I was diagnosed with narcolepsy 13 years ago. A CURSE!!!!!! And I never feel rested - EVER!!!!!

I've actually got Narcolepsy with Cataplexy, and Sleep Apnea.

Bonus points for having restless leg syndrome as well; I can't remember if Hypersomnia counts as well since one Doctor said I had that as well.

Xyrem helps me out a good bit, as well as the machine. I'm down 60 pounds since last year, yet my pressure needed to be increased for some reason

I'm scared of Xyrem.

nobody wrote:I'm scared of Xyrem.

Me too. But I've heard it works really well in narcolepsy, and potential turn one's life around.

SleepingUgly wrote:

nobody wrote:I'm scared of Xyrem.

Me too. But I've heard it works really well in narcolepsy, and potential turn one's life around.

So I'm told. I've been on the fence about it for months. I feel stuck like I can't make a move either way. I feel stuck.

What are you afraid of exactly?

SleepingUgly wrote:What are you afraid of exactly?

Stopping breathing, aspirating vomit, sleep walking and getting hurt and/or ruining my CPAP, problems with the high salt content. Those are the main ones.

nobody wrote:

SleepingUgly wrote:What are you afraid of exactly?

Stopping breathing, aspirating vomit, sleep walking and getting hurt and/or ruining my CPAP, problems with the high salt content. Those are the main ones.

What does your doctor say about these concerns? Does someone live with you?

SleepingUgly wrote:

nobody wrote:

SleepingUgly wrote:What are you afraid of exactly?

Stopping breathing, aspirating vomit, sleep walking and getting hurt and/or ruining my CPAP, problems with the high salt content. Those are the main ones.

What does your doctor say about these concerns? Does someone live with you?

He still wants me to try it. The person I live with wouldn't notice if I died in the night, ha.

He must have addressed your concerns beyond saying, "You should still try it." Did he say that your fears of dying, aspirating, etc. are unfounded? Does the person you live with sleep in the same room?

No, he said they are legitimate concerns and that some people have had problems with Xyrem while others have really turned around because of it. I sleep alone.

If dying or aspirating are "legitimate concerns" then far be it for me to encourage you to try it! I'm a little bit shocked that those would actually be legitimate concerns and he'd still want you to try it. I suspect he doesn't think there's much of a chance you'll be harmed by it. Either that, or he has astronomically high malpractice insurance to cover himself when he encourages patients to try medications that legitimately may kill them! What are your thoughts?

If you decide to try it, perhaps it's possible to get a friend or relative or your housemate to spend the night in your room just the first night you use it?