Newly diagnosed with Narcolepsy.....

TheMamaLisa · 08-28-2006, 06:20 PM

So I went and saw my sleep specialist. He originally started with a diagnosis of idiopathic hypersomnia. After telling him of my symptoms he said from review of my MSLT and symtoms that I have classic symtoms of Narcolepsy. However I didnt fall into REM right away but he said 15% of patients dont during the MSLT. I am 26 and wondering if symtoms will be getting worse as I get older. I also have been experiencing cataplexy but didnt know thats what it was until the Dr told me. I currently take Provigil and Ritalin. I will be adding Ativan at night to try and control parasomnias. With my meds during the day i still have "sleep attacks" but not as severe as without it. I know these drugs are habbit forming and I already need a high dose to see some kind of effect so i am wondering what the long haul has in store for me. Thanks

Angel77 · 08-30-2006, 06:53 PM

Dear MamaLisa...I don't believe they are habit forming, when used correctly and for the right reasons. I am also narcoleptic and although I have more sleep attacks w/o meds, I do not experience the withdrawls that other people do who take them for other reasons.

I was dx'd at 23, ignored it, got pregnant w/ my 2nd and the attacks got much worse after birth. I began medication a few months later, stayed on them for a few years and recently went off all and am going natural and am doing much better.

Xyrem is basically GHB, but it is given to narcoleptics w/ cataplexy and can reduce or stop the cat attacks altogether. I belong to another board that is just sleep disorders only and most of them have had horrid luck with provigil. If this is you, get off it...but a few do really well on it, in that case, stick with it. But it may likely take some fine tuning to get your system running as well as it can.

I took myself off the road for a few years because I was still too sleepy to drive safely. I just recently got back to driving.

But, I also have a thyroid disorder, rheumatoid and a brain injury, so my case is severely complicated and I don't want to scare you. But your life is going to change and it's a tough road...but with a good support system and a healthy dose of humor, you'll make it.

How are you coping with it right now? How many kids do you have and what age are they? Have you identified any triggers...i.e...my cat attacks are triggered by extreme fear, being startled or huge emotional blow ups...therefore, I avoid those whenenver possible.

I am actually headed for a nap, but saw this and wanted to post to you as there's not a lot of narcoleptics and I'm hoping this at least gives you some hope.

TheMamaLisa · 08-31-2006, 12:23 PM

Hi! Thanks for your response! I feel alone alot due to nobody being able to fully understand I suddenly feel tired and better sleep now or else.... I thought for a while I was strating to go crazy. I have been having what I call "spatial anaomolyies". I know know it sounds wierd but I go into like a tracne where I feel like I am not there but obviously I am because I am seeing life happening around me. Kinda hard to explain though. I have noticed if I start to feel agitated my body especially my back through my arms go weak to the point I can barely move and would prefer to not even try. It lasts up to 2-3 min at times then I am fine until the next time. I have also noticed a couple times where my knees buckled because i was laughing but I never actually but it together until my sleep Dr brought it to my attention due to other symptoms. I have been taking the provigil and ritalin as prescribed and find certain days where the meds just dont work at all and others where I can at least be somwhat functional without sleeping on and off all day. It blows my mind though I can take the stuff and fall asleep within an hour or two of taking it. I take it in pretty high dose so it is just baffling how I can still sleep. I am thankful though that there are a few funtioning days every week. My kids are 2 and 3 years old. I have a very supportive boyfriend and family who help me with the kids so if I need to go to sleep i usually can safely. I have limited my driving down to 15 min trips. Its really nice to be able to talk to someone who understands. Thanks

darci2 · 09-01-2006, 03:46 PM

I have some type of sleeping disorder, but I am having trouble with the Dr's.
They have me on Trazadone, which I just started taking 2 months ago. Itis helping me to sleep a little better,but that isn't the big problem. I have some kind of episodes where I fall asleep on the toilet in the middle of the day and didn't even think I was tired. I have many times walked to the kitchen or somewhere in my house and all of a sudden BOOM I hit the floor falling asleep or something. I have gotten in my car to go to work or when I get home from work and find out that when I parked my car I fell asleep. I had a car accident driving home from work, (did not feel tired!) and the next thing I know I'm bouncing off a parked car and took out three cars. My fiance thinks that I stay awake at night on purpose and if I would just go to bed at a decent time everything will be fine. My Dr's don't believe me or something, I don't know. I have been sent home from work twice in the last two months for apparently falling asleep in the middle of doing my job. This just happened on Wednesday. I was at work for 61/2 hours, everything was fine, then all of a sudden my manager had somebody else take over my job, took me in the back and told me my eyes got like glazed over and I was kind of wobbly and sent me home. I can't return to work until I get a clean bill of health from my Dr. But they just keep me off work for a week and send me back. Is this Narcolepsy do you think, or am I losing it? Brain tumor? Weird or what? I'm scared and don't know what to do. Plus on top of it I smoke and I don't want to burn me or anybody else up. Along with this problem I have Fibromyalgia, TMJ, Myofasial displasia and depression. Help me please!!!!!!!!

TheMamaLisa · 09-01-2006, 04:56 PM

Well it could be many things. Have you had blood tests to rule out thyroid issues or anemia etc. Also do you snore when you do sleep possibly sleep apnea? Have you had any infections lately like strep or mono? You should request blood tests and then have an overnight sleep study. They can determine from that if you need a daytime study. For me they worked on the most obvious wich was severe sleep apnea and then after that was treated and I was still having symptoms i went back for the daytime study where I was diagnosed as having idiopathic hypersomnia. I was being treated for that for about 7 months when my symptoms worsend and i started experiencing cataplexy although I didnt know thats what it was until my Dr told me. Finally got diagnosed with narcolepsy. Do you have any other symptoms besides falling asleep uncontrollably and insomnia at night? It took over 5 years to figure out I had narcolepsy and now that I know at least I dont feel so crazy. Although I still fall asleep whether I take the ritalin and provigil but just not as often. If your Dr wont work with you then seek another opinion. Good luck! It can be a long road! Oh one thing i forgot to mention is chronic fatigue syndrome often goes along with fibromyalgia that could also play a part in your symptoms!