1 reply to this topic

[keean]

First, my dx is narcolepsy with cataplexy. I can't drive now and really don't have a life because I fall asleep so much. I've been dealing with this (not well, I might add) since I was a teenager and I'm well into adult life now

That said, I want to ask you if any of you given up on treatment because the side effects of these drugs are just too much? I hate them so much. I'm going to make a list of everything I've tried:

methyphenidate - generic and the Ritalin brand
dextroamphetamine - generic and GSK dexedrine brand tablets and spansules
Adderall - unsure of brand, probably a generic
Modafinil - provigil brand

The only one of these things I found tolerable and useful was the GSK dexedrine brand 5mg tablet. It's no longer being made so I can't get it. What is available is the worst drug I've ever had the misfortune of taking (manufactured by Barr I believe, awful stuff, I question whether it is even dexedrine).

I don't like how any of these drugs make me feel, generally. I don't feel like myself at all. I feel drugged and I hate it. And they don't completely stop the sleep attacks anyway, at least not at the doses I can tolerate. Only modafinil was good at that, but it kept me awake for ages, like 2 days!! I'd never sleep if I took it!

Currently my doctor is attempting to get my insurance to cover xyrem. I don't want to get my hopes up too high but I can feel that happening and I know it's not good because I'll probably be let down later. I have rotten luck with drugs, being one who always gets all the terrible side effects

My doctor is the smartest guy I know and super nice too, so I feel like a jacka** because I'm not doing well with these treatments. I feel like it's my fault, I'm too picky or something. Why is it so hard to find something helpful that doesn't create more problems?

Have any of you just said screw it and don't drive or work or anything? The whole thing is depressing me so much I can't stand it. I wish I had someone to talk to who can understand what I'm going through. It seems like so many PWN are able to take meds that help and I'm left out of that because I hate the side effects so much.

I probably wanted to say more but I'm tired now.

[flutterbye_xo]

First, my dx is narcolepsy with cataplexy. I can't drive now and really don't have a life because I fall asleep so much. I've been dealing with this (not well, I might add) since I was a teenager and I'm well into adult life now

That said, I want to ask you if any of you given up on treatment because the side effects of these drugs are just too much? I hate them so much. I'm going to make a list of everything I've tried:

methyphenidate - generic and the Ritalin brand
dextroamphetamine - generic and GSK dexedrine brand tablets and spansules
Adderall - unsure of brand, probably a generic
Modafinil - provigil brand

The only one of these things I found tolerable and useful was the GSK dexedrine brand 5mg tablet. It's no longer being made so I can't get it. What is available is the worst drug I've ever had the misfortune of taking (manufactured by Barr I believe, awful stuff, I question whether it is even dexedrine).

I don't like how any of these drugs make me feel, generally. I don't feel like myself at all. I feel drugged and I hate it. And they don't completely stop the sleep attacks anyway, at least not at the doses I can tolerate. Only modafinil was good at that, but it kept me awake for ages, like 2 days!! I'd never sleep if I took it!

Currently my doctor is attempting to get my insurance to cover xyrem. I don't want to get my hopes up too high but I can feel that happening and I know it's not good because I'll probably be let down later. I have rotten luck with drugs, being one who always gets all the terrible side effects

My doctor is the smartest guy I know and super nice too, so I feel like a jacka** because I'm not doing well with these treatments. I feel like it's my fault, I'm too picky or something. Why is it so hard to find something helpful that doesn't create more problems?

Have any of you just said screw it and don't drive or work or anything? The whole thing is depressing me so much I can't stand it. I wish I had someone to talk to who can understand what I'm going through. It seems like so many PWN are able to take meds that help and I'm left out of that because I hate the side effects so much.

I probably wanted to say more but I'm tired now.

Nuvigil (armodafinil), brand/generic names, has a much better side effect profile than Provigil (modafinil). I ran a Facts & Comparisons report, which is a database I have access to that compares drugs, on them. Provigil was the daughter drug and not as developed. Don't get me wrong, Nuvigil still has side effects but not as many and some that occur in both drugs are less prevalent. Headaches are most prevalent (>10%) in both but Provigil also has nausea (>10%) whereas Nuvigil is nausea (4-10%). Provigil depression (4-10%) Nuvigil (1-4%). You get the idea. Nuvigil comes in 50 mg, 150 mg, and 250 mg. So say you take 150 in the morning you can take another 50 in the afternoon if needed. Maybe the smaller doses would work better for you. I just thought if you haven't tried it you might want some info. You should do what's best for you.

I find that stimulants, such as Adderall (which is a amphetamine/dextroamphetamine mix), just make me crash later. I'm a pharmacy student so I know a little. Sometimes I think man I'm telling patients to take this stuff but I can't always be compliant myself. But I believe in medicine, I tell patients to not give up, drugs are made to help not hurt, and you need to find what's best for you. If you get Xyrem I suggest reading the whole medication guide and being very compliant. My physician is pushing Xyrem and I'm going to go research the monkey out of it. Good luck!