8 replies to this topic

[Heidi987]

I have just recently been told that I have Narcolepsy. The doctor explained that a normal person's sleep cycle is every 90 minutes, going stages down toward REM sleep, and then starting over. My sleep cycle is non-existant, I guess I just go up and down and up and down all night throughout the cycles/REM.
I am on Provigil now and absolutely hate it. It helps with concentration and focus, but not excessive daytime sleepiness, and it makes me extremely moody throughout the day, depressed? I feel like it is non-stop PMS systems that are just horrible. I am going to the doctor in a couple of days, I have read good things about Adderall on different websites. Any comments?
Also, has anybody tried Melatonin before bed? It seems that it regulates your cycles, which I would think would lower a person's EDS the next day.

[greatbig47]

Heidi,

I like provigal, even though it doesn't always do away with my EDS. It doesn't make me uber-moody, but I've heard from a lot of people of this happening to them.

You'll find something that works for you. Let us know how it goes, and what you discover.

-Stu

[vaboris]

Provigil didn't work for me either. I switched to Ritalin which is better for me and a lot cheaper. Maybe try it for a while as an alternative for EDS.

[sleepylisa]

Hi Heidi,

I tried Ritalin first but coulnd't take it...it was making me very anxious and moody. I'm on Adderall right now and it seems to be helping a lot with the EDS, though I have lost about 15-20 pounds since starting it (I've been on it a month and a half). Adderall does decrease my appetite (a little) but I honestly think that the majority of the weight loss is due to actually being awake all day and moving around. Before Adderall, I was spending about 18 hours a day in bed or on the couch, on a good day. Good luck and let us know what works for you.--lisa

[Toph4er]

How long have you been on the provigil? It took me two weeks of being quite sick to adjust and now it works great, you just have to force yourself past the unpleasant start. I think now though I need to up my dosage...

[shall]

I am also trying to find something to combat the EDS. I started provigil in may 07 and I thought it was the miracle drug I had been searching for my whole life. I started out on 50 mg and it kept me awake driving. I slowly had to keep increasing the does until I was around 400mg a day. I had to take 2 200mg just to stay awake driving to work. I started to fall asleep driving on the way home from work and so I had to take more to get home. I started getting paranoid thinking everyone was out to get me and ruined a lot of relationships. I went to my doctor and he reduced the dosage and decided to use ritalin and provigil together. Ritilin puts me in a depressed state and I refuse to take anymore of it. I had thoughts of suicide when taking it and its best that I do not use that drug anymore. I have used xyrem and it will make me sleep all night but I still have the EDS. I called my Doctor which is supposed to be Tops in his Field and he said there is no more prescriptions that he feels can help me. He is supposed to call me today with some information that he wants to go over. I am not sure what that could be but. I see you guys discussing a lot of drugs he has never brought up and I am going to throw those names at him and see what he says. Sorry for such a long post. any help would be greatly apreciated

[Toph4er]

Have you tried an antidepressant in conjunction with the other meds? I take Provigil and an anti-seizure/anti-depressant which leaves me off just fine. I think I'm the least depressed person on the planet! Practically incapable of it!

[Julie A]

Yes, I have tried melatonin. In fact, after my docs misdiagnosed me for years, A med student I knew gave me a bottle of it. It knocked me right out. I should've owned stock in the brand I used. But as for EDS. . . sorry to say, it didn't help. That was middle school. And I slept through all of it.
Once diagnosed, I was prescribed, among many meds, Adderall. I read on this board that many people have great success. This is a great thing. For me, it was terrible. I paced back and forth and my mind raced so much that I broke down and cried in the middle of class because I couldn't even write my name at the top of my paper. . forget the rest of the assignment!
Truth is, it doesn't matter what my experience. Searching for the right treatment is searching for the one that works for you. Give it a shot. If you're like me, you'd be willing to try anything.

[kogeliz]

Provigil and Xyrem were miracle drugs for me a few years ago when I was first diagnosed.
At the time I was also on Celexa, an anti-depressant.
I decided to do away with Celexa after being on it since I was a teenager because I figured I was always just misdiagnosed with depression.
And since I stopped taking the Celexa (six months ago), the Provigil seems to have lost its effect.
So, I'm thinking of getting back on Celexa.

I have tried adderall and had adverse side-effects. It made me extremely tired, dizzy and weak.
I tried ritalin and the same thing.

I have tired different types of vitamins, teas, herbs and such... and nothing really seems to work.
I could drink 5 cups of coffee and I don't feel a thing.

So, medications work in mysterious ways...
...just have to find the ones that work. Which can be time-consuming and frustrating.