Narcolepsy? Anyone?

Have you or someone you know been diagnosed with narcolepsy? What were the signs, ie how did you know or suspect it might be a problem?

The reason I ask is because I've finally decided to get something done about my sleep (or specifically constant feeling of tiredness) so I was doing some reading online and have realised narcolepsy isn't just about people falling asleep in the middle of the sentence/their dinner/while driving up the road. Specifically, the weird REM-onset hallucinations etc, I've been having these for years (I call them my "crazy falling asleep dreams") and I've had them all - hallucinations, paralysis, noises inside and outside my head, etc. OK I know these can also be a sign of sleep-deprivation in a more general sense, but geez, I'm now wondering if this might be the reason the nanna-napping urge has always been so strong in me.

I'm booked in to see GP in a couple of weeks to get a referral for a sleep study, just interested in case there are some narcoleptics around who have been diagnosed even though they've maybe had more subtle sets of symptoms.

Isn't that what Turkish Delight ended up being diagnosed with? If you've got her on FB, maybe give her a yell :)

Also, have you been tested for sleep apnoea?

I thought I remembered a mention of it! No, I don't have TD on FB (only have my baby buddies). I'll look for some old threads though.

The sleep study will test for apnea, as that's the most common finding.

My mother had narcolepsy. I only knew her on meds though. Very hard to wake up of a morning, then she would struggle to sleep at night as she was taking one drug to keep her awake and another to get her to sleep. She was a rather delusion person, whether that was due to the narcolepsy or her other issues, I don't know.

Thanks for replying Astrid. :hug: It sounds like your mum's narcolepsy was quite severe, and the medications sound like they were very full-on too. It's interesting you mention the delusions, that is something that has come through in my reading, because the boundaries between dream and wake states are not very clear people with narcolepsy can confuse the two. It also sounds like narcolepsy is often comorbid with other psychiatric disorders as well so it can be difficult to determine what symptoms belong to what condition.

Well, we are pretty sure mum suffered from Narcissistic Personality Disorder and before she died she had one of the worst cases of dementia the social workers had seen in a person of her age. Just so hard to know what caused what, what impacted etc

Sounds like it was a very complicated scenario and very difficult for you. xxx