Narcolepsy Support Group

I'm not a doctor, and I have no medical training, but from what I have read about our condition is that N is often characterized by the fact that people with it tend to enter REM immediately upon falling asleep, I think adding the Non-REM is just stating that he doesn't. Not all PWNs have to do that. (Because N is a sleep disorder) operations on his eyes would have no consequence on his hypothalamus (in his brain). Narcolepsy tends to show between the ages of 11 and early twenties but can come on earlier or later. My mother, for instance, believes I have shown mine since birth but I only recently was diagnosed.

Is your son on any medications other than the steroids?
One of the reasons I had such a hard time getting my doctors to say N is because I have been on Effexor for several years...which not only treated my early symptoms so that I didn't pursue a diagnosis until they got worse, but represses REM sleep. I had NONE on my sleep studies. It may be that your son is taking something that effects REM. I wouldn't think so, but maybe the steroids do it.

As far as I'm concerned (and thank goodness, my doc), if it looks like duck, walks like a duck, quacks like a duck.... stop trying to tell me it might be a dog.

Kidlet
Our son was not taking no medication when they checked him. He had been off the steroids for about 3 weeks when they did his study. His sleep has improved but he is getting stronger episodes where he loses control of his muscles.
Thanks for thinking of us
Qmax

You are supposed to go into REM on a MSLT within 8 mins. An overnight polysomnography the latency to REM sleep for a 'normal' person should be about 90 mins. Most N is under an hour. Also are sleep is characterised by frequent arousals. My MSLT was under 8 mins and my latency to sleep on the night was under 4 mins and I went into REM under an hour (NOT WITHIN MINUTES). You can have a blood test done for your tissue type. Nt all N have this but its not too invasive. Or the Epworth Sleep Test. This is a few minute question and answer test which you will be able to google.
The sleep onset of REM's are a common feature of narcolepsy but not required for a diagnioise to be made. All what I have written has been copied from a letter from my Sleep Consultants who is well known and respected in the UK.

The cataplexy alone proves the N as you can have N without C. But not C without N.
I was diagnosed with my N after 24 years because my left eyes field of vision went, my left side of face, neck, arm, hand went numb. After an MRI to rule out a tumour I saw a neurologist and the EDS, HH, C, showed N.
Could the operation have caused scarring on the brain. N can come on after a head trauma. Swelling on the brain can be caused by eplipsey and epilepsy causes scarring on the brain. I know this as my mum had the swelling then got epilepsy. Your son won't have epilepsy but I am trying to say they could have thought this at the beginning. Epilepsy is often a mis diagnoise for N. As is ME, depression, physcosis and the list goes on. So its good that you have a solid diagnoise and sounds like the correct one.
It has also been documented that gluten (from food)can cause build up on the brain when you have an intolerant to it. Rather than it attacking the gut linning (celiac disease) the auto immune system attacks the brain. Cutting out gluten therefore helps stop EDS and C.

Sorry to hear about your son. I don't know if this helps but I think non REM narcolepsy is also called idiopathic hyperinsomnia. I'm not 100% on that as I'm not a doctor, but read the following article and decide for yourself.

http://www.talkaboutsleep.com/slee...