Narcolepsy/Excessive Day Sleepiness

[Turkish Delight]

So i think i have narcolepsy or excessive day sleepiness. Narcolepsy is

Narcolepsy is a chronic neurological disorder caused by the brain's inability to regulate sleep-wake cycles normally. At various times throughout the day, people with narcolepsy experience fleeting urges to sleep. If the urge becomes overwhelming, patients fall asleep for periods lasting from a few seconds to several minutes. In rare cases, some people may remain asleep for an hour or longer.

I went to a fantastic ENT specialist yesterday and he diagnosed me with possible narcolepsy. I have suffered all my life. Wanting to sleep ALL the time and wherever.
He referred me to a professor at the Epworth, who i'll see in March. i knew it wasn't all in my head. I knew there was an illness for too much sleep!

The ENT specialist had a look in my nose and saw that i had a deviated septum in one side of my nose which will get operated on, but it isn't the cause of the sleep apnoea. He reckons its definitely narcolepsy. I am over the moon, knowing that it will get treated as sleep as dominated my life.

Any other narcoleptics??

[Lulu]

Yeah Xp is. But he is the kind that falls asleep standing up, has to keep moving to stay awake. Had a few head injuries over the years....

[Turkish Delight]

Like me. I need to be moving too Lu. Otherwise i fall asleep. I can't watch telly without sleeping, so i iron or cook as i watch.
Did he take any meds for it?

[Lulu]

Nah, he is supposed to be going in for a sleep study, but things have improved over the years. He can function fine (not like before), and as long as he goes to bed at a decent hour and he is woken at a decent hour.

He wouldn't take meds anyway. Too wary of them and he would be on them long term. He has learnt to live with it, because it's the way he was born. Like I said, things have improved HEAPS but it's been down to getting a good routine.

[Inanna]

Hi TD - I actually worked in a sleep disorders clinic for a couple of years & am trained to certicate level in this.

Narcolepsy is very very rare. It is also very very over diagnosed. To be diagnosed you need to have a sleep study. This is where you will go in to a centre overnight (most centres are hospital based). You will be wired up for an eeg, ecg, oximeter, pressure bands etc. You are filmed whilst you sleep and a nurse will watch you and report on her observations of your sleep and what your ecg/eeg etc are saying.

If you have sleep apnoea this is very likely why you are so tired. Sleep apnoea as you are probably aware is a condition where a person ceases to have respirations (apnoea) whilst they sleep at intervals. There is an apnoea and when o2 levels drop the patient usually (we hope!) arouses. This causes a loud snort or snore and then the process goes on. We can see from an eeg what stage of sleep you are in & how long you spend in each stage, how frequent your apnoeas are, how long they are etc. Sleep apnoea is very very dangerous due to the sleep deprivation. Due to the constant arousals patients never get regenerative sleep. Thus the tiredness. Patients fall asleep driving, eating, etc. With narcolepsy the sleep is more inappropriate. Pts will drop to the floor, sleep for only a second or two during a conversation etc.

I have only seen in 2 years at a very large centre 2 cases of narcolepsy. The others were ? narcolepsy but really were from sleep apnoea.

Good luck with your appointment - if you need any other info let me know...

[Yael]

I also believe from everything i have heard from DH sleep specalist that most people with excessive day time sleepiness are actually from having sleep apnoea at night and being so sleep deprived.

DH also can't in the evening stop moving or he will fall asleep = i found him last night sitting on the floor cleaning up the toys with his hand reaching out leaning on the edge of the toy box - he fell asleep trying to put the toy in.

He is a lot better then before he was diagnosed (then he would do it at like 5pm), but the night before he forgot to wear his CPAP mask and hence was bad the next day.

The dr said he has patients constanty fall asleep at traffic lights etc, one was a pilot who fell asleep flying a place (EEK!)

It is all from sleep apnoea, but not narcolepsy, i believe those are people who actually look like they are putting it on but literally just fall asleep randomly (like from Moulin Rouge)

How did your sleep study go?

Do we want the name of this sleep specalist? Or i can refer you to a good ENT surgeon who operated on DS.