5 replies to this topic

[lsuazo]

My daughter started experiencing headaches in June 2006. They worsened until they were every day, starting the first of this year. We got our diagnosis of Narcolepsy in August of this year, but we're told the headaches are not related. I'm so frustrated - nothing helps her headaches - they are every day, and sometimes quite severe. We now have vicodan, but she can't take that every day, so we only use it for the really bad ones and try to keep it down to two or three times a week. The sleep doc has no ideas, our neurologist has given up as he says all he can give her would slow her down, not an option as her EDS is severe, we have been doing cranial manipulations for two months with an osteopath which hasn't helped . . . I read and read and research so always looking for ideas and perhaps someone out there has gone through the same thing? We are being told to see another specialist to see if there is something else going on with her - perhaps an immune deficiency, so off we go to seek another doctor, more tests - you all know the drill - lots of guess work, trial and error, experimenting with the meds.[/i]

[Hope & Faith]

I'm 52 and NEVER had headaches before this, so maybe the narcolepsy is related. Seeing she's so young, is it possible she's just developed allergies and it has nothing to do with the narcolepsy? Have you had her checked for them? I sleep with a humidifier in my room - right next to my bed. The moisture in the air seems to help. Also a chin strap, so I don't breath through my mouth, only my nose is taking in the humid air. It does help, although I have no idea why. If I get a bad one during the day, I do the steaming pot of water with a towel over my head. There are products you can buy to add to the water. I can't remember them, as I tried them so long ago and they didn't help me.

[taisha]

HI I'M A 26 YEAR OLD FEMALE WHO ALSO GETS MIGRAINES A LOT, IT'S CRAZY. I'M NOT SURE IF THEY ARE RELATED TO THE NARCOLEPSY OR THE MEDICATION I'M TAKING FOR IT. WHAT MEDICATIONS IS YOUR DAUGHTER ON FOR THE NARCOLEPSY ITSELF? IM TAKING PROVIGIL AND RITILIN.

[majorfunding]

I had a constant headache for four years then frequent for many more years. They finally said they were tension and I should see a shrink. T hey said most tension headaches do not appear for the first few seconds after waking.

The headaches mostly went away but I do not know why. I never saw a shrink.

CM

[lsuazo]

My daughter takes 400 mg of Provigil per day and 10 mg of Prozac. The headaches started in June of 2006 - well before the narcolepsy diagnosis. They have been getting steadily worse - they didn't change after she started the N drugs . . . she has a headache literally all the time, just varies in intensity. Nothing over the counter touches it, we've tried migraine meds, and a variety of other things - including a DO that did cranial manipulations for two months, but that didn't help.

I did take her to Phx Childrens a couple of weeks ago - they suggested a therapist. I wasn't happy about it, but have since decided having someone to talk to is probably a good thing. She's 16, not an easy age without N, so I'm sure she's under stress, though she doesn't show it and says she's fine. She's agreed to see the therapist and give it a go.

HI I'M A 26 YEAR OLD FEMALE WHO ALSO GETS MIGRAINES A LOT, IT'S CRAZY. I'M NOT SURE IF THEY ARE RELATED TO THE NARCOLEPSY OR THE MEDICATION I'M TAKING FOR IT. WHAT MEDICATIONS IS YOUR DAUGHTER ON FOR THE NARCOLEPSY ITSELF? IM TAKING PROVIGIL AND RITILIN.

[WakeChallenged]

I think the migraines are related to Narcolepsy. I have had migraines all my life. So I can relate when you talk about the intensity. My dad also had migraines, and though he was never tested for Narcolepsy, he had many of the symptoms. I take 400mg Provigil and 60mg of Adderall, and some days I get bad headaches, but not as bad as migraines. They seem to come on when the medication is wearing off.