Title: Recently Diagnosed
kjmg - July 21, 2008 05:59 AM (GMT)
My story: For the past 2 years, I have had difficulty in staying awake throughout the day. I'd fight sleep almost daily on the drive home from work. Sometimes, I'd actually slip off onto the shoulder but would awaken luckily before anything disasterious would happen. Frequently, I would be driving or walking only to not remember how I got there. Many other symtoms would occur however, I never gave thought to Narcolepsy although I knew I had a problem. Narcolepsy wasn't an illness that I was familiar with although I had heard of it and knew it was a sleep disorder. At first, I just assumed that I was working too hard and not getting enough rest.
Following a sleep study (both night time and day tests), I had a diagnosis. My sleep study report deemed my results severely abnormal. Based on my symptoms and the sleep study results, a specialist confirmed the diagnosis a month ago so I am still coming to terms with all of this. Learning about this disease did then explain other symptoms such as not being able to move for several seconds either when falling asleep or waking up and getting weak knees when excited etc.
I have been prescribed Provigal. So far it has helped but I do find myself getting sleepy in the afternoon. I do worry about getting used to the medication and requiring more.
My other concern is how in the heck did I get this. No one in my family has ever had this nor any of the symptoms associated. I did get Lymes Disease 12 years ago and have had continued issues with that illness. I'm not sure if this is another illness as a result or not. Traditionally, I am too old to suddenly have this as I am 44 and symptoms started 2 years ago. I can't imagine what people have gone through who have had to battle this through school and nearly their whole life.
Thanks for reading,
Toph4er - July 21, 2008 08:08 PM (GMT)
I am really happy you went and got a sleep study, most people just shrug off any problems as something else and live eternally tired. For the Provigil, ask your doctor if you can split the dosage to take half of it in the morning and half of it around noon. As for how you got it, I think the Lyme Disease may have been a trigger. All it has to do is kill off the hypocretin cells in your brain and then your one of us!
I hope that sheds some insight,
abbey - July 22, 2008 09:52 AM (GMT)
I think I got narcolepsy from mononucleosis. so maybe the Lymes disease theory is correct. While adjusting doses of your meds is probably going to be necessary... At least they know why you are so tired and can do something about it.... Now you can Wake up and rejoin life with the rest of us!! Good Luck
Kishi - August 1, 2008 04:11 AM (GMT)
Understand the concern. It is a life-changing diagnosis. However, you are not alone and there are many expert health professionals seeking a cure.
It took me over 30 years to get the correct diagnosis. After wondering what was wrong for so long (take more exercise, eat better, etc.) I was pleased to know. At least I can now make allowances for N and alleviate its effects - Just as Abbey says, I can get on with my life.
In my case, docs suspect a case of meningitis when I was 5 which damaged the immune system. One theory of narcolepsy has it that for some reason the immune system attacks the hypocretins that regulate sleep. If this theory is correct, hopefully they will find a way to tell the immune system to stop doing it.
Toph4er - August 13, 2008 12:23 AM (GMT)
i wonder if different potential triggers make treatments by different meds more or less effective. i think we should first get a list of peoples possible triggers and then see what has or hasnt helped each of them
sam.toombs - August 18, 2008 12:21 PM (GMT)
Phil Collins' music hurts me immensly and on a daily basis ... thats my trigger - i'm sure of it!
Toph4er - August 19, 2008 01:40 AM (GMT)
You listen to Phil Collins on a daily basis? I'm sorry. :P
sam.toombs - August 21, 2008 07:19 AM (GMT)
not out of choice or anything - sometimes you just hear it from passing cars or on the tv - plus i dont need to hear it for it to hurt me - it just hurts me knowing someone somewhere is listening to it!