Does anyone on here have Narcolepsy or know anyone with it? Can you explain the symptoms you or they experienced. How was it diagnosed, did it take a while to get a diagnosis and were you originally said to be fine and then later diagnosed as having it? My mother and I, maybe even my sister and uncle, show symptoms. My mother was apparently fine and all sleep studies she's had were inconclusive.. but she's deffiently not fine. I've been having symptoms since I was a young teen and it's gotten increasingly worse as I've gotten older. I'm worried my son might have it too but with autism it's hard to tell if he's tiered or just overwhelmed
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My son has another type of sleep disorder (he is one of 1000 people in the world with his disorder). He was tested for narcolepsy and cataplexy too.
If you are concerned my advice is get a referral to a private sleep physician. If your sons peadiatrician is good, mention it to them.
The public system for sleep disorders is truly clogged up. We initially went public and it was a flipping nightmare and basically didn’t get any answers. Went privately and got answers very quickly.
Don’t worry about the label. Keep a diary of all events that concern you. Are there any triggers? Take your diary to the GP for a referral. You may even benefit from seeing a neurologist.
It took us from first presenting to GP for referrals about 3 months to get a definitive diagnosis, but my sons case involved a neuro-psychiatrist, sleep physician and neurologist due to the unsusal presentation and complexity.
Yes I was diagnosed 3yrs ago after being wrongly diagnosed for 15yrs!
Since my early 20s I was passing out at the drop of a hat usually when I had a poor sleep the night before, i was hospitalized many times when my blood pressure dangerously dropped, i would be out cold for about 8mins and no amount of fluids would elevate it back up.
They tested me for epilepsy and other things and all we're inconclusive, so I pretty much gave up until I had a bad episode and it took my mum to ask if I'd ever had a sleep test before!
So I asked my doctor to refer me to a clinic that specializes in sleep testing/conditions.
I had a night test where I was attached to a lot of tubes and in a room that had a video recorder to also watch my sleep patterns!
The results came in a few weeks later with irregularities, so the next step was to have a repeat test the same as the one before and then they would wake me at 5am and I would have to stay awake for 2hours until they came to tell me that light were going off and to see if I could go to sleep and how quickly I do!
That sleep test is usually repeating 5-6 times throughout that day and is called an MSLT I was told after three going to sleep before 5mins after my head hit the pillow,
I was diagnosed with idiopathic hypersomulance (narcolepsy)
I have now been medicated for 3yrs and happy to say I havnt had a severe blackout since I've been on them I do however get a bit tired some day me around 2pm and need just a 20min nana nap but that's all the refuel that is needed, all the best!