The plot thickens: Narcolepsy?

Saw my sleep doctor yesterday. My numbers are good, I'm sleeping 7.5 - 8 hours a night. But I'm still exhausted. He asked me some questions and decided to have me checked for narcolepsy. Which at first seemed bizarre, but once I did some reading on it, it might actually make sense. So that test is going to happen in a few weeks.

Meanwhile, I feel run down and awful. Exhausted and demoralized.

Anyone else deal with apnea and narcolepsy?

Only by misdiagnosis -- my father's extreme fatigue and alarming EDS was attributed to narcolepsy back in the 70's, prior to the invention of CPAP (he was prescribed Ritalin, and took it religiously all through my childhood just to function). When he finally got his first sleep study done in the late 90's and started PAP, his EDS disappeared. I hope the new round of tests get you closer to some answers, and a better nights rest

There are some people on here diagnosed with narcolepsy so if it turns out to be your diagnosis, I'm sure they'll drop in on the conversation. While you are waiting for that testing, you might want to use this time to be sure you've ruled out other contributors. Some questions to ask yourself and/or your doctor...
* Is your CPAP treatment optimized and therapeutic?
* Are you getting adequate hours of sleep?
* Do you have any other sleep issues like limb movements?
* Are you on any meds with your symptoms as known side effects?
* Have medical conditions been ruled out, like thyroid dysfunction, diabetes, anemia, etc?
* Have you been tested for any deficiencies like Vitamin D, Magnesium, Vitamin B, etc?
It may be you'll uncover something that will make the narcolepsy test unwarranted. Keep us posted.

kteague wrote:There are some people on here diagnosed with narcolepsy so if it turns out to be your diagnosis, I'm sure they'll drop in on the conversation. While you are waiting for that testing, you might want to use this time to be sure you've ruled out other contributors. Some questions to ask yourself and/or your doctor...
* Is your CPAP treatment optimized and therapeutic?
* Are you getting adequate hours of sleep?
* Do you have any other sleep issues like limb movements?
* Are you on any meds with your symptoms as known side effects?
* Have medical conditions been ruled out, like thyroid dysfunction, diabetes, anemia, etc?
* Have you been tested for any deficiencies like Vitamin D, Magnesium, Vitamin B, etc?
It may be you'll uncover something that will make the narcolepsy test unwarranted. Keep us posted.

Thank you kteague! In answer to your questions:
* The CPAP treatment seems to be optimized. I don't know how to tell if its therapeutic seeing as how I am still completely wiped out most days. But I DID have a day last thursday where I actually felt pretty darn good all day long. Better than I have in a long, long time. But that hasn't repeated itself since then. I haven't looked closely at graphs but my AHI is between 1 and 3 every day.
* I am getting between 7.5 - 8.5 hours of sleep each night. On weekends and my work from home days I usually nap as well.
* I do not believe I have limb movements. I do have a mattress that I need to get a memory foam topper for probably because I think I wake up sometimes from being stiff. I also wake up once a night on average to use the bathroom, and sometimes my husband's restless sleeping will wake me (but he has only been sleeping on and off in the bed due to something in the bedroom triggering his allergies).
*I am taking Sertraline (Zoloft) but I am pretty sure that it shouldn't be making me tired.
*I have done a ton of blood tests. I have a borderline (as in, some doctors wouldn't even call it an issue) thyroid case and take medication for it. I did have an iron deficiency but have been taking iron.

I think I might have mildish narcolepsy symptoms, once I started reading online about it. If I prove positive for narcolepsy maybe that will mean I can finally find an effective treatment for my exhaustion and be a super functioning human! But I am just so tired of all the lifestyle changes, the struggling to find answers and then the answers not being 100% correct. I definitely have sleep apnea, for example, but my doctor thinks there must be something else going on additionally. I'm tired of being tired. I'm also nervous about side effects from narcolepsy drugs, how they'll interact with my anti-depressants, etc.

I was diagnosed with Narcolepsy a few months after my initial OSA diagnosis. This was about 14 years ago. I was unsuccessful with meds for the condition but with time when ALL my sleep disorders were properly dealt with, I rarely had narcolepsy episodes. I also have a seizure disorder among other health problems & I think my narcolepsy was either mild or was a part of my seizure disorder & was misdiagnosed. My years of what I call my 'seizure hell' were from 2004 to 2011. My narcolepsy episodes overlap these years, and I haven't had an episode in a long time. So, I can't be positive I have narcolepsy, I think I do, but it could be a part of my seizure disorder.

That said, the narcolepsy didn't make me feel awful, the OSA, RLS & PLMD did. Once these disorders were addressed I felt better. With what was called the narcolepsy I just fell asleep at very inappropriate times. Such as when at the computer working, during a meeting (once while presenting), and frequently while driving. After the 'seizure hell' began, I could no longer tell between a seizure & a narco episode. That has always made me wonder if it was seizures I was having the whole time. My neurologist says no, that they could tell the difference on the EEG's done during a 6 day in hospital test for my seizure disorder. I have had several MSLT's & scored as positive for narcolepsy each time. I no longer have narco episodes, my neurologist attributes this to the 8 meds I'm on for my 'seizure cocktail', he says the mixture has completely suppressed the narcolepsy.

My best suggestion for you would be to look for the causes one at a time. First, your doc is getting you scheduled for the MSLT , so see what those results show. Before you start drugs, like Provigil or Nuvigil, look for other causes. These causes might be RLS or PLMD or both. If you have ANY leg movement during sleep, ask your doc about addressing these disorders before you begin narcolepsy drugs. Also, closely monitor your PAP data, not just your AHI, but leak data & look for any patterns that might indicate that you are moving a lot during sleep. This tool was not available to me back then, so I can't tell you exactly what to look for, I just know now wish I'd had that tool. The best indicator of leg movements is really messy bed clothes the next morning. Another indicator is your sleep partner, they should know if you kick in your sleep.

I'm sorry my post is so long, but true narcolepsy can be hard to diagnose IMHO. I'm branded with it for life. This goes on file at the local BMV (at least mine did) & each time I renew my drivers license I have to get a clearance statement from my neurologist.

From how you say you feel, you might just need time to adapt to PAP therapy, and possibly a leg movement issue. You will know more after your MSLT, so let us know the results after you have that done.

Jen