Narcolepsy/Excessive Day Sleepiness

[Lulu]

The other part of narcolepsy that I find particularly fascinating but which is incredibly disturbing for the patient and those around them is automatic behaviour without awareness. Narcolepsy has been used as a reasoning behind homicide, suicide and other violent attacks...

Put the screwdriver down TD - don't forget it's very very rare.
I find that part fascinating too Inanna - I remember and old case I read back from I dunno the 1800's or something, was that was they called somnambulism? (sp?) The poor fella ended up spending his nights in a locked room....

Hypagognic hallucinations - oh far out they are TERRIBLE.( Now I know what it's called) I suffered from them for years to the point all my friends knew to shake me fully awake and talk to me. It started with horrific nightmares but I "trained" myself to wake up from them but Oh NO, my stupid brain wanted me to cop it so it got to the point I would dream I woke up and fell back asleep to the same horrors. Then I would dream I had woken up and walked around the room to make sure I was awake...then fall back into the horrors again.
Even though I couldn't move I managed to eventually breathe in puffs - and therefore that was the signal to shake me awake . Sometimes I could manage to lift my arm and slam it down on xh...and break the paralysis.
After awhile I stopped having them and it hasn't happened for about 6 years now PHEW.

Enough about me though - from what you have said here Inanna I'm not sure about Narcolepsy. When xp sleeps he does not move. He has woken up in alot of pain from his neck/shoulders being on a funny angle, I was always worried about him falling asleep twisted in a funny position and doing nerve damage.
Hope he gets the CAT scan soon....

[Yael]

TD - my husband has a very narrow airway, and that combined with a small, set back lower jaw is the primary cause of his sleep apnoea.

He had a soft tissue xray done of his throat, and it was around 1/2 the size of a normal adults when standing, and when we sleep our muscles relax and it narrows (especially made worse by being very overweight.. but my husband was underweight when diagnosed, so it took the xray and sleep study for drs to believe he had sleep apnoea, and not just bad snoring)... so basically he had no chance of not having apnoeas.

Have you had xrays done of your throat etc?

Sorry if i sounded like i was doubting the narcolepsy thing, i didn't realise that that was what the dr actually told you. When are you seeing the proffessor?

Deb - speaking of strange things and sleep, for years and years now people tell me they wake me up un the night and the morning and i will sit up with my eyes open and have a conversation with them, but in the morning i will have no recolection of it what-so-ever... i talk in my sleep a lot also. I never used to beleive my friends (they used to do it to me on school camp to ask me things about boys etc, and i thought they were making it up), but it used to happen with my dad waking me up in the morning with a glass of OJ for school, and 2 hrs later i would wake up for real and find a glass of OJ next to my bed and dad would tell me i had a proper convo with him.. DH says i do it to..

Is that strange?

[Turkish Delight]

Wow Yael. That is freaky my dear!
I have slept walked a few times, i always talk in my sleep and i snore so bad!

I haven't had an xray of my throat as yet. The second ENT surgeon said that i have nothing physically too wrong that he could pinpoint which could cause mild sleep apnoea and my excessive daytime sleepiness.

I have overbite, so my lower jaw sits just a tad back from my upper jaw and th second ENT specialist said that could be a reason of my gagging/choking at night when all the muscles relax and my jaw falls back when asleep. He didn't mention the dental splint, like the first ENT surgeon had (no way am i having that splint in to keep my jaw forward!). My soft palate and tonsils are okay, so there is no blockage in my throat either.

I had an appt with my booby surgeon yesterday and i mentioned it the septum thing to him as i want to get plastic surgery on my nose too at the same time, and he said that in most cases a deviated septum doesn't need to be corrected as it really isn't doing too much damage, so he gave me a referral to get a CT scan of the face done, but he was more than happy to do it

Oh no, the second ENT mentioned that it is possible narcolepsy with all his findings and the stuff i told him about the history. He did say that anti=depressants can cause excessive sleep too, but i told him that my symptoms began waaaaaaaaaaaay before then.

I see the Professor on March 3rd. I can't wait.

[Yael]

DH also has a minor overbite, and normal tonsils etc, but the thing is that everything looked normal before the x-rays, and nobody believed him about the sleep apnoea, until he demanded a referral to a sleep specalists and then when he saw that dr he demanded a sleep study (after which he went back with the xrays and the sleep study results, and they were like, oh golly, you do have really bad apnoea!)

So i'm saying everyone might tell you that it looks normal, but xrays to help, and trust your instinct, you know it isn't 'normal', so keep going until you find somebody who can help you.

[Turkish Delight]

I am so over it. I haven't had a good night's sleep for the past 3 nights as DD is not sleeping well atm. Lack of sleep can most people of the edge, but for me it is 10 times worse. I am so sleepy all the time. I find that it is exacerbating my depression too. I tell DH that i need to sleep in the arvo after work and he cracks it. I tell him that i have an illness and he makes fun of it by saying "well you have all these tests and reports and drs to say that you can sleep a lot"

I need sleep. I am really getting quite irritated that i can't sleep in the arvo and i am so sleepless. Sleeplessness really wears me out. I become psycho *****!

[Life is Good]

Oh TD, what you are going through sounds awful. I am glad you have that appointment booked and I hope you find the answers you need. I can well sympathise with your daytime sleepiness and how it gets totally out of control when the little ones keep you up!

As it happens I am booked in for a sleep study on Friday for suspected Periodic Limb Movement Disorder. I think I have had it all my life but now that I have had perpetual sleep disturbance since the boy was born, I am also really taking strain. I know it isn't the same, but trying to operate when you have have a night of disturbed rest because of little ones AND a medical condition is just the pits . Big - please keep us posted on any developments x

[Turkish Delight]

thanks babes. GL to you too.

I hate when you don't get the support from family and friends just because the illness you are suffering isn't visible ITMS.