Does anyone have Narcolepsy?

[ca2003]

I recently underwent a sleep study and the doctor has diagnosed me with Narcolepsy. I'll try and condense the details that led to my diagnosis - I suffer from migraines and found a local "Headache center" and had an appointment. At that appointment I brought up that I notice my headaches are much worse when I get less than 7 hours of sleep but even when I get more sleep (7-8+ hours) I still wake up tired and she referred me to a sleep doctor. I had an overnight sleep study and a daytime sleep study done and got my results on Friday. When the doctor initially looked at my overnight sleep results she said her initial thought would be a mood disorder but pairing it with the daytime sleep study results and how I am feeling she believes it is actually narcolepsy.

I was very surprised when I got the diagnosis because when I think of narcolepsy I think of was falling asleep while talking to people and that has never happened to me. I always seem to feel tired during the day but I have never fallen asleep when I didn't mean to. When I looked more into narcolepsy I realized there are a few different "symptoms" and one part is the excessive daytime sleepiness. She prescribed Ritalin (5mg) for me to take in the morning to help with keeping me awake during the day and to feel less tired. Is anyone else taking Ritalin for narcolepsy? She did tell me Provigil is the first drug they prescribe but because it interferes with birth control she prescribed Ritalin.

Does anyone else have narcolepsy with the excessive daytime sleepiness? What medications have you taken and how have they worked for you? Has it progressed to something further (i.e. at first were you just tired during the day and as time went on did you start having attacks where you fell asleep uncontrollably)? What are the side effects that you have found with the medications? I know Ritalin is like speed and I am concerned of the side effects and getting addicted or feeling like I need it. Has anyone taken both Ritalin and Provigil at different times and do you find the side effects on one not as bad as the other? Did you have issues when you started taking the medication (I wanted to start taking the Ritalin today since I don't have work just to see how I react to it but the pharmacy was out so when I pick it up this week I am not sure if I should wait until Saturday to start taking it)?

I appreciate any insight anyone can provide. I have another appointment in a month so I am starting a list of questions I have for the doctor since it was hard at the initial appointment when I was diagnosed to come up with questions right away.

[tinkinpink84]

Wish I could help ya out there. But i have that daytime sleepiness. Have since after I had my kids. When we lived in germany i went to the dr because i was always sooo tired all the time. He gives me benadryl! Makes no sense that i go to the dr for being soo tired all the time and he just gives me medication that will make me sleepy. I really cannot understand how that would help at all! If you work i would def wait till the weekend to take the ritalin to see how it reacts. Because its tricky to find the right dosage so to make sure its right and your not all wired and nuts id do it on the weekend. I recently watched a true life episode about two people with narcolepsy. One of them took adderall but she also had other meds she took too but the other ones on top of the adderall were not good for her health. She was able to lower her dosage of adderall though over time and realize how much she really needs to be able to function during the day. So you may have to play around with the ritalin to find the dosage that suits you.

[ca2003]

Wish I could help ya out there. But i have that daytime sleepiness. Have since after I had my kids. When we lived in germany i went to the dr because i was always sooo tired all the time. He gives me benadryl! Makes no sense that i go to the dr for being soo tired all the time and he just gives me medication that will make me sleepy. I really cannot understand how that would help at all! If you work i would def wait till the weekend to take the ritalin to see how it reacts. Because its tricky to find the right dosage so to make sure its right and your not all wired and nuts id do it on the weekend. I recently watched a true life episode about two people with narcolepsy. One of them took adderall but she also had other meds she took too but the other ones on top of the adderall were not good for her health. She was able to lower her dosage of adderall though over time and realize how much she really needs to be able to function during the day. So you may have to play around with the ritalin to find the dosage that suits you.

That is crazy that a doctor gave you benadryl for sleepiness, that makes no sense. I had been telling my primary care doctor for a while that I always feel tired and she told me it was normal so I always thought that maybe I wasn't getting enough sleep, the last thing on my mind was that I had narcolepsy. If you are really concerned what you have could be something more you can always go see a sleep doctor.

I'm going to have to see if I can find that true life episode on narcolepsy, I guess it wouldn't hurt to watch it. I believe the doctor gave me a pretty low dose of the Ritalin but I'll definitely wait until Saturday to start.