Multiple Sleep Latency Test for Possible Narcolepsy

Well. Went for my followup today with the sleep doctor, actually first time I have seen him, since the Cardio wanted us in for our studies quickly. He said I am doing well on the machine, averaging 6 - 7 hours a night, don't remember all the numbers but he said they were good on the pressure of 7. Then, after a slew of questions, he is now scheduling me for a Multiple Sleep Latency Test, he things there is a possibility I have a mild case of narcolepsy. I always thought narcolepsy was just someone falling asleep all the time, even mid sentence. Apparently there is alot more, and that stereotypical image of actually falling asleep is not always a symptom. Just did some reading on it, and it seems like a pretty fair possibility. Wow. Whodathunkit? Has anyone else been diagnosed with this also?

Abut having a MSLT for narcolepsy... I am of the opinion that unless one has frank symptoms of narcolepsy, this test is best reserved for after one has been on therapeutic treatment beyond their time of recovery and only if they are consistently getting adequate hours of good sound restful sleep with treatment of any other known sleep issues in place. (mine is limb movements) Now, if the doctor is just wanting to assess your degree of daytime sleepiness before prescribing stimulants or possibly making changes to your cpap treatment, that's another story.

I've had 2 MSLTs in the past 10 years. They were followed by a full night in the lab so it could be determined if any daytime sleepiness was actually due to poor sleep. If the sleep is not right, sleep deprivation can cause symptoms similar to narcolepsy. I wouldn't trust a diagnosis of narcolepsy without all the above being in place.

Getting a diagnosis of narcolepsy can be serious business. I'm of the opinion I just want the truth, whatever that truth may be. Then again, it is not early in my life. A diagnosis of narcolepsy can affect driving, getting medical or life insurance, and probably other things I haven't thought about. Maybe someone with narcolepsy could comment on that. The treatment is probably similar to what would be done for the garden variety excessive daytime sleepiness. Again, anyone with that diagnosis who can say for sure? I'm just saying if you need a diagnosis and treatment, it is what it is. I am not advocating anyone be selfishly on the road driving when they should be off. Just be careful you don't get set up for getting a label that doesn't really apply.

I have had a daytime sleep study recently because my doctor said he suspects that I have narcolepsy. He also said he wasn't sure whether it could be narcolepsy, "idiopathic hypersomnia" or residual sleepiness even after being treated with the CPAP. I think I may have symptoms of cataplexy, but I'm still a bit confused about what is considered cataplexy since I had always thought it meant you fell straight to the floor, which has only happened to me once some years ago and never again since.

Anyway, I did cancel my first study because when I asked the techs at the sleep lab whether not sleeping well the night before could have an effect on the result of the test they said it could. So I wanted to make sure when I had the test done it was on a typical day.

Well I don't know the results of the test yet, but I definitely had the typical experience I have every nap I take (which is a lot) while there, that experience being where I'm dozing in and out of sleep, my arms and legs are frozen (unable to move), I'm hearing voices and other noises, I feel as though there's a presence lurking over me and I also have the odd sensation of being pulled in and out of my body and into and out of dreams.

Also, during the day I have issues where I lose chunks of time. Like the timeline seems continuous to me but I'm missing things because, basically, other people are telling me I'm missing things and I find it incredible that I could possibly have missed such things when I'm sure I was sitting right there the entire time.

And I will go from point A to point B and not remember the inbetween. I do things that I don't remember doing or I start going somewhere with a destination in mind then sort of come to at another place entirely and think wait a minute, I was supposed to be going somewhere else which is nowhere near here, what the heck am I doing. Now I know people do this sometimes, but for me it happens daily and it's extremely frustrating.

I've had EEGs to see if I was having absence seizures and MRIs to see if anything is wrong with my brain, blood tests to see if I have other disorders like thyroid problems or whatever, but all of that was normal, so I'm hoping this sleep test will give some answers, though I'm skeptical because this has been a very long and difficult journey and I've been accused of things like hypochondria, mental illness, personality disorders and even malingering.

I'm having great difficulty trusting my sleep doctor. I figured he wanted to do this test to prove I wasn't lying in order to get drugs or attention. I hate the drugs and do not want to take them. I want the problem solved without drugs. Also, because I've been told that I'm just inventing it anyway, for a long while I'd believed it was true, that I am crazy and lazy and if I just stopped believing this stuff was happening it would stop happening. well it didn't.

And then I asked for the sleep study and it was found that I have severe apnea. I'm angry that it could have been treated earlier if I'd been taken seriously with the complaints I was bringing to doctors instead of just being thrown into the psychiatric trash bin.

I had very high hopes for the CPAP and believed it would finally solve these problems, and it has helped a lot, but they are still there to a significant enough degree that I cannot function anywhere near a reasonable level. I also experience extreme weakness and sleepiness throughout the day. It seems I will wake up feeling fine but a few hours later I'm struggling to stay awake and I'm very impaired, almost as though I'm drunk. If I can I will take a nap, feel refreshed, but then it will come back again sometimes sooner sometimes later.

Dunno if that helps you any, but that's been my experience. I do agree with the other commenter that it really affects your life significantly and you definitely don't want any "false positives" on a test like that. I'm literally at my wits end because stopping being "lazy" and applying myself as best I can has done nothing to mitigate the problem...and the CPAP has just given me a small window into how I SHOULD be feeling all day but I just haven't got there enough to live a real life.

I'm at the point now where I'm wondering if I should give up my driving license. Technically I should anyway since I'm aware that I have some serious issues that could affect my ability to safely drive. I've actually cut way down on my driving anyway. These days I almost never use the car because most of the time I don't feel safe enough to drive.

Hey Nobody - did you choose that name because that's how you've been treated? There was quite a bit of discussion on here a couple years ago by those who had been mislabeled with different psych diagnoses prior to being diagnsed with sleep apnea. And there was talk of how misunderstood by the medical providers, family, friends, and employers they (we) had been in regards to energy level, clarity of mind, and even our intentions. Your story is sad. Even sadder is that it is not that uncommon.

It will be interesting what your tests show. Your symptoms sound almost identical to some of my descriptions. There are so many other sleep abnormalities like sleep paralysis, lucid dreaming - tons of them, that can come into play and worsen with severe sleep disruption such as with apnea. You may have narcolepsy, but my guess is the jury is still out. How long have you been on cpap and are you sleeping well with it? Getting enough hours?

Hope you'll keep us informed.

Kathy

If I do have it, it is not severe. I do get sleep paralysys, and cataplexy with strong emotion. I always thought both were normal....I also periodically will leave home to go somewhere, and 10 - 20 miles later will not remember driving the distance in between. It is just a black hole of missing time. We'll see.

Hi, you absolutely have to see a neurologist ASAP - not just a 'sleep doc' (unless he is a neuro) or some other specialist. All your symptoms point to problems only a neurologist can sort out properly and find one who specializes in or is known for sleep problems (vs spinal, stroke, etc.).

This stuff has been going on for years (ok maybe decades), and I've seen neurologists for migraines during that time, had ct scans and mri's. The sleep doc is pretty good, did his sleep fellowship at Michigan under neurologists. After I get the results from the study I'll see what my next step should be. Doing research on narcolepsy though, these symptoms are all there....

I had the day time test done I need something done I'm tired all the time it's mostly because of taking my mask off hope you find out whats wrong

Well if you continue to take the mask off, you're not being treated and so will continue to feel tired. You somehow need to deal with the mask problem, whether it means tweaking the one you have in various ways, or changing pillows (the bed kind, not the mask kind), the temperature of the room you sleep in or getting another mask altogether. Until you rule out the mask (after giving it a fair trial) as a factor of your problems, it'll be hard to deal with anything else.

kteague wrote:Hey Nobody - did you choose that name because that's how you've been treated?

Hey Kathy, nah I chose the name because I was feeling uncreative that day I signed up for the account But I am tired of the way I've been treated, yeah, doesn't give me much confidence in modern medicine that's for sure.