Narcolepsy

Hi, I just noticed that you have had no replies to your post, and couldn't help thinking how interesting it was, that someone could just fall asleep half way through a sentence. I have never even heard of narcolepsy until now, so I had a look online to read more about it. You should check the link below, it has a lot of information on narcolepsy and they are also looking for people to participate in clinical studies, i'm thinking it is probably hard for them to find participants as it is only 1 in every 2000 people who even suffer from narcolepsy. Sorry I can't give you any first hand accounts.


Regards,

.::suzy::.


Http:/ /www-med.Stanford.Edu/school/psychiatry/na rcolepsy/

I was diagnosed with narcolepsy 8-10 years ago. This "illness" is very frustrating to say the least. I was so determined that his "illness" was not going to take over my life. However, after a couple of years of trying to cope with narcolepsy and the stress of my job made me physically ill all the time! I swear, I was constantly sick. I've tried cylert, ritalyn, and provigil and so far, non of the drugs prevent/help my daytime sleepiness. These medications really made me sick, just a constant nausated feeling along with feeling like I was talking 90 mhp and could just out of my skin. (a friend of my said that is the same feelings she experiences when taking diet pills.) these sleep attacks occur as often as every 2 - 3 hours, but I have good and bad days. I totally understand where you are coming from about driving and falling asleep in the middle of a sentence. My doctor told me that I should not drive, but I have to get my child to school, etc. However, I would never try a 30 or more mile trip, just a few miles is hard enough. You learn to live with your limitations, and it helps if I can nap before I know I have to run and errand or pick my child up from school. I have not worked in almost 7 years. I applied for disability 6 years ago, have been repeatedly turned down, but recently had another hearing before an administrative law judge, so I am waiting on that decision. I don't have high hopes, because narcolepsy does not fit ssa's "guidelines" for disability. I guess i'll know soon enough, just too bad ssa isn't very educated on the effects of narcolepsy. I also experience the sleep paralysis frequently and hallucinations. I've only had 1 experience of cataplexy that I can truly say was cataplexy. At night, I usually wake up every 2 - 3 hours. I usually go right back to sleep, but I never experience "restful" sleep. The last time I visited my doctor, he mentioned trying the "date rape drug" xyrem for me to take at night. The idea is to hopefully obtain better sleep at night that might reduce the daytime sleepiness or the frequency of them. Haven't crossed that bridge, I just know he said that it would be recommended that I get a glass of water and go directly to the bed and take the medication, because if I was to take the medication, then go to the bathroom before going to bed, I might not make it to the bed. There is lots of info on the web regarding narcolepsy.

There is quite a bit of info on the web regarding narcolepsy. Maybe viewing those forums might be of some help to you.


Sorry for the rambling, but I just felt like I needed to respond to your post. Best advice I can say is, pray to god that he will watch over you and you just have to learn to "manage" your daytime sleepiness as best you can. Hopefully, your doctor can find a drug that will help you as well.

I was diagnosed with narcolepsy almost 4 years ago. Would fall asleep standing,talking,driving,anywhere,anytime. I used to be normal. That is until my car wreck 10 years ago. My family doc didn't take me seriously when I told him just how "tired" I was. So I finally went to a specialist[sleep studies where done...Diagnosed with central nervous system hyperinsomnia]. Which is very rare and no treatments available. A few years later, I went to a different sleep specialist only to find out I had been miss-diagnosed. It was narcolepsy. Treatable, thank god. Narcolepsy is very scary. Before I knew what was wrong I was so afraid that I would end up in a coma and never wake up! I was sleeping more and more as time went on. Medications like provigil, cincerta and/or ritilan can make you almost normal. You know you are limited to however long the medicine works. Once it where's off, your out for the count. And you can tell when it is starting to wear off. You come down gradually. Just got to pay attention to your body. You can get your license back also. Once you are being treated. I have cataplexsy and hypnagogic phenomena which go along with narcolepsy in some cases. Those symptoms are treatable also with meds. Medbroadcast has alot of useful info to explain all about narcolepsy. You might want to check it out. About 85% of people with narcolepsy are miss-diagnosed at first. So, don't give up and push till you find out what is really wrong with you. A second opinion is always good. Wish you the best of luck cause I know just how you feel. You'll be in my thoughts and prayers.