Narcolepsy

Hi,

I don't have narcolepsy...but my dad was given a diagnosis of "atypical EDS" (the doctor may or may not have made that up; nothing else fit apparently) and I've had several incidents of sleep paralysis...maybe I can help a little bit?


- What symptom (i.e. cataplexy, EDS, sleep paralysis/hallucinations) affected you the most/was the worst for you (esp. in high school, if you had it at that age)?

I can't say anything about cataplexy; I will say Dad had a lot of trouble just not falling asleep. He couldn't drive for more than an hour (and only that long when medicated) and his was in danger of losing his job because he kept falling asleep at work (got better after medication, but not resolved). He couldn't get a lot done after work either because he would doze off.

As far as sleep paralysis goes, I would say that doesn't particularly affect you except the first time it happens--unless it happens a lot, with really frightening hallucinations. The first time it happens, if you've never heard of it (I hadn't) it is horrifying. After that, if you're aware of what's going on, you just sit there and wait for it to pass. If you're hallucinating, sometimes it's frightening and sometimes not.

- How would you describe that symptom? How does it feel as it hits you? Can you tell in advance if any of the symptoms are about to be triggered?

I'm guessing you're mainly asking about cataplexy, which I don't know anything about, but...Dad said the only warning for his falling asleep was that he would get bored...and obviously feel really sleepy.

Sleep paralysis is just...waking up (not opening your eyes, because you can't, just 'gaining awareness' I suppose) and being completely paralyzed. The first time it happened to me, there were no hallucinations; I was just awake and couldn't move. I was terrified and had no idea what was going on, wondered if I was crippled forever somehow, if someone would find me eventually or I would die, blah blah, but I came out of it after a few minutes of terror and was fine. Then I looked it up on the internet and realized I wasn't dying. Which was great.

The one time I had a frightening hallucination was a bit different. I woke up in the middle of the night and couldn't move, but I heard a jangling noise and had the impression that it was a ghost. Then my entire body was overwhelmed with an intense buzzing, vibrating feeling, like air was boiling inside me (on some website about s.p. this was described as "visceral buzzing", which is appropriate enough I suppose), and I thought this was the ghost possessing me or something, but this didn't last long before I came out of it. The memory of this is a little hazy because it happened in between periods of sleep.

I've had a few other episodes with/without hallucinations, but the other hallucinations weren't as frightening as that one.

- How often do you experience EDS? Every day, or does it depend on your stress levels/your sleep schedule, etc?

Dad had trouble with it every day, but it varied in severity.

- If you experienced hallucinations going in or coming out of sleep, how long did they last? Have you ever hallucinated while awake and moving around?

(Again, not narcoleptic, but have experienced falling asleep/waking up/sleep paralysis-type hallucinations)

No hallucinating while awake. The times I've hallucinated have typically been either going into sleep or in the middle of the night, so it's hard to tell where the hallucination stops and the dreaming begins. I probably would have thought that whole ghost possession thing was a dream if it hadn't frightened me so much that it woke me up a little. So...length of hallucinations, I don't know. A few minutes? It's pretty hard to reckon time when you're hallucinating. You don't generally have a clear idea of what's going on.

- If you were originally misdiagnosed before you realized you had narcolepsy, what other diagnoses did doctors suggest you might have? Did a doctor ever suggest you suffered from anything really off-base/out there?

Dad was diagnosed with sleep apnea before he did some sleep studies and they couldn't find any evidence of it. But this made more sense than the narcolepsy, since he was overweight, had a history of breathing issues, and didn't have cataplexy (don't know if he experienced sleep paralysis; he never said anything about it).



- Were you able to find a medication that worked for you, and if so, how long did it take? Were there any particular meds that gave you really bad side effects/what were those effects?

Dad took Nuvigil, and it seemed to help a little, but it didn't get rid of the issue entirely. Then again, like I said, he didn't have the standard EDS symptoms...

If it helps, I had a college friend (1960s) with narcolepsy .. the notable symptom was that he could fall asleep any time, any where ... as soon as he relaxed. He didn't mention any hallucinations, he just dozed off and was relatuively easy to awaken.

He was treated with amphetamines (pre- war on drugs, it didn't even raise eyebrows) with limited success. His instructors knew, and would just have someone nudge him awake if he dozed in class.

Have you seen "My Own Private Idaho"? MC has narcolepsy.

I had to be tested for it, but that wasn't what I had (I had a nerve disease). My 'spells' were just really sleepy spells. All of a sudden, I'd get really sleepy. Later I would feel totally awake.

They checked my HLA blood type, I think it's called, because some are more common in narcoleptics. They made me stay up all night, then tested my brain for 10 minutes after I fell asleep. And they did more electrical studies that day with flashing lights, etc, to see if it weren't some form of epilepsy that I had.

So it definitely wasn't narcolepsy (and the spells stopped, btw), but they were seriously thinking it probably was. The nerve disease diagnosis came after progressive neurological and other symptoms appeared later over a year or so.

The sleepy spells were never listed as a symptom of that disease, but neither were over half of my symptoms until the last 5-8 years or so as more research is done on that one. I wouldn't tie them together in fiction, though. Maybe the epilepsy possibility helps. They said there were less common forms than what you typically think of.