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View Full Version : Interviews re: Narcolepsy



Raida
10-27-2005, 11:47 PM
Hi all,

Well I'm at it again. I'm working on yet another article for the correspondence writing course that I'm taking (and hopefully will end up looking to query out eventually).

I'd like to hear from anyone who's narcoleptic or knows someone who suffers from it.

I'm interested in hearing:
- when and how it was diagnosed and/or discovered
- how it's treated/maintained
- how it effects day to day living
- if it's caused problems in personal and/or professional relationships
- if there's anything that can't be done (ie: work-wise) due to having narcolepsy
- And of course anything else that you care to share and I've not asked.

Any help would be greatly appreciated. You can pm me, leave a message right here in the thread or contact me at e2000pamela@hotmail.com (http://e2000pamela@hotmail.com/)

Thank you all for your time.

Lyra Jean
10-28-2005, 09:32 AM
I think I have narcolepsy but I have to get tested. There are two tests. One is a daytime sleep test and the other is a night time sleep test. Where I live each test costs $1500. I live in Florida.

So far I learned, depending how bad it effects the person, it can be controlled through medication or a rigid sleep/wake schedule. I don't know if you would be able to get a driver's license or not or if it would effect what kind of jobs you could get. But that is what I know.

KelseyF
11-06-2005, 01:52 AM
My horse might have narcalepsy.

L M Ashton
01-02-2006, 03:27 PM
I've had narcolepsy, as has my uncle and one of my friends.

Both my uncle and I had secondary narcolepsy, meaning that, in our cases, it was caused by severe sleep deprivation. We both found out when we were diagnosed with obstructive sleep apnea. Apnea = stop breathing during sleep. We both were treated with a CPAP (Continuous Positive Airway Pressure) machine, which essentially forces air through our throats to make us keep breathing all night. For both of us, the narcolepsy was cured as soon as treatment for our apnea was effective. For both of us, it hasn't shown up since and it doesn't impact our lives at all.

Before it was treated, my uncle fell asleep driving (he was a taxi driver and had passengers at the time). He nearly lost his license, his job, everything, but because of the diagnosis of apnea shortly after that, everything worked itself out.

For me, I didn't know I had narcolepsy, but I did know that I was having major sleep problems. As soon as I realized how bad I was getting, I pulled myself from driving unless I was having a good day, and even then, I limited myself hugely - driving during daylight hours only, only if I felt really good, short trips only where I was able to keep my focus, etc. Not driving at all wasn't viable, unfortunately, unless I wanted to end up living under a bridge.

Unfortunately, where I was living in Canada, it was a two year wait to get into the sleep lab. It meant that my life was hell until the diagnosis, but then, my main problem was apnea, not narcolepsy.

My friend, on the other hand, has to take medication for her narcolepsy, but I don't know the kind or dosage. She was diagnosed when she approached her physician about it, but she already knew the symtpoms as she's also my respiratory therapist and fitted me with my CPAP equipment and has a lot of patients with sleep disorders like mine.

If you need more information, please feel free to contact me off-list.

Chalula88
01-02-2006, 07:44 PM
I have a mild form of narcolepsy in which I fall asleep with my eyes open and I can still hear what's going on around me. While I'm sleeping with my eyes open I don't really register what I'm hearing, but when I wake up I'll remember hearing it. I was diagnosed at 14 or 15, I went to a sleep clinic and had an evaluation done, but no sleep test because it was too expensive. How it's treated, for me, is by living by a strict set of rules, going to bed and waking up at a certain time, avoiding caffine, exercising, going outside because it sets my circadean rhythm back where it needs to be. Because my narcolepsy is accompanied with severe insomnia, restless leg syndrome and periodic limb movement I often times suffer from sleep deprivation. The main place this affects my life is school, because it's hard to concentrate and I can fall asleep in class and seem like I'm awake. Often times I miss announcements about tests and end up not studying and doing really badly on them. Most often I fall asleep in math and science because they don't hold my interest and those are the two classes that i have the lowest grades in.

M.A.Gardener
01-06-2006, 07:01 AM
Provigil is often used to treat it.

Chacounne
01-06-2006, 10:00 AM
Hi Raida,

You might want to visit the
Narcolepsy, FDA ban, TNH, etc. thread in the Take it Outside forum further down.

I hope this helps :)

Happy Writing,
Chac

Raida
01-10-2006, 06:53 PM
Quidscribis, Chalula88, M.A.Gardener, and Chacounne,

Thank you all so much for your help and insight. :snoopy: