Narcolepsy??? - Sleep Disorders Message Board

starlet32079 · 04-26-2005, 02:09 PM

Hello all,
I am 26 and was told about 2 weeks ago that I had CFS & Fibro. Now my doc thinks it might be Narcolepsy. Does anyone know anything about this condition?

Starlet

tiresome · 04-27-2005, 08:52 AM

Hello Starlet. I am not sure if my reply will be any help except that I too have been told that I might have Narcolepsy. In March I had a sleep study done and the report stated that I have possible narcolepsy and restless leg syndrome. I was diagnosed with Partial Complex Seizures about a year ago and have been on anti-seizure drugs since that time. I am confused by the narcolepsy diagnosis because I do not fall asleep while driving or eating or in the middle of a conversation. Although I do have times while sleeping that I feel that I am awake but cannot move and can hear things going on around me. There also times when there is too much going on around me that I feel the need to lay down and sleep (like at a family gettogether) this has always been the case with me. There have been times when people have not been able to wake me up, it takes a few minutes instead of immediately responding.
Do you have any of this? From what I have read other symptoms are knees giving out for a few seconds, spacy peroid where face relaxes and seems as if you are staring off, muscles suddenly relaxing for a few seconds uncontrolably. I have had some of these also but never thought much of them since they only happen for a few seconds. LOL thought it was normal.
I see my neuro on Friday to discuss with him what to do next. Please keep in touch and let me know how things are going for you. Are you scheduled for a sleep study?
I hope someone with more expeireince answers your question as I really would like to know also.
Laura

shellshocked · 04-27-2005, 04:31 PM

I was treated for narcolepsy---but I think the real problems were hypothryoidism and sleep apnea. I'm doing the CPAP now and I do feel better---but now I'm dealing with hypothyroidism---I would definitely check out the thyroid threads---I have heard that Fibro is hypo on steroids. It can't hurt anyway. Good luck.

starlet32079 · 04-30-2005, 12:28 AM

Hello.
I have had the thyroid, diabetes, and anemia ruled out already. I just don't want to waste anymore of my money on things that I don't need to have done anymore. I have horrible credit but not from being young and dumb and spending money unwisley. It is from all of my medical bills...I have already been garnished 3 times. I just don't know what to do. I have two beautiful daughters 4 1/2 and 1 yr. I am so tired during the day that I have to lay my 1 yr old down just so I can sleep. I put things in places that they don't belong...milk in the cubbord and cookies in the fridge. I almost caused a accident the other day while driving. I looked before I changed lanes and swear there was no one around, so I got into the other lane and this person was honking at me and rearended me and then took off. I don't even know if this reply makes sence...
I DO know that something is not right. I will post tomorrow when I can.
thank you both for your replies.
starlet

shellshocked · 04-30-2005, 08:50 AM

Quote:

Originally Posted by starlet32079

Hello.
I have had the thyroid, diabetes, and anemia ruled out already. I just don't want to waste anymore of my money on things that I don't need to have done anymore. I have horrible credit but not from being young and dumb and spending money unwisley. It is from all of my medical bills...I have already been garnished 3 times. I just don't know what to do. I have two beautiful daughters 4 1/2 and 1 yr. I am so tired during the day that I have to lay my 1 yr old down just so I can sleep. I put things in places that they don't belong...milk in the cubbord and cookies in the fridge. I almost caused a accident the other day while driving. I looked before I changed lanes and swear there was no one around, so I got into the other lane and this person was honking at me and rearended me and then took off. I don't even know if this reply makes sence...
I DO know that something is not right. I will post tomorrow when I can.
thank you both for your replies.
starlet

Ask your doctor about the possibility of putting you on something like Provigil---its a stimulant that can help with the sleepiness.
You might have another doctor check you for thyroid---there have been changes in lab numbers and some doctors are not aware of the changes.
I know what you mean about having to put your 1 year-old down so you can sleep---I've had problems since my daughter was born---and she just turned 19. My problems included peri-menopause, menopause, hypothyroid, and sleep problems.
Good luck.