new to board

[pjthomason]

Hi everyone, I am new to this board. I have had moderate RLS for many years but in the last year has become chronically worse. I also suffer from all the symptoms of narcolepsy. This past summer my doctor gave me a two weeks sample of requip. It certainly helped my rls but increased my symptoms of narcolepsy, especially cataplexy and hallucinations. Does anyone take anything else that could possibly help. Sometimes I can take a vicoden before bed and that helps too.

[ViewsAskew]

I would think all of the DAs (dopamine agonists like Requip) might make it worse, but you never know.

I guess you could try switching to Mirapex and see if it does the same thing. If it does, that class of meds is probably out for the time being. When the time released formulas come out, they might work better. But that will be a couple more years.

So, that leaves you three other classes of drugs - opioids, benzodiazepines, and anti-seizure. Most anti-seizure also can induce sleepiness, as to do the benzos. Opioids can, too. But since Vicoden works, maybe this class will help. Tramadol might be a good option - it often makes people more alert, gives a little lift.

I hate to say it, but you'll probably have to do the trial and error thing that so many of us do.

Welcome to the board. Hope you can find some good info here that helps. If nothing else, we all listen pretty well .

[mwade1]

Welcome to our elite, yet figety group! Just to add to what was said, my experience with Requip is that the side affects lessen or go away with time. If the other problems force a change, you need to look at the options Ann mentioned. If the side affects are the main problem, you might try toughing it out for a while and see if they subside. Like Ann said, there is much trial and error in our community, so consequently you don't want to write off any one trial too soon and only you and your doc can say when it's time to move on. Don't be discouraged with the talk of trial and error. Once you settle in on a treatment, you can have a very comfortable life with very decent sleep, or so has been my experience.

Good luck!!

[pjthomason]

Thanks for all your words of encouragement. I have decided to seek help outside of my area and have an appointment with a neurologist at a sleep facility in Scottsdale, Az. I have lived with narcolepsy for the last 40 years. I have been on all the drugs at one time or another. I am now retired from the medical profession myself and have been drug free for the past year. I just give in to my day time sleepiness and take naps several times a day. However, the rls is much more bothersome, particularly when you count on your nighttime restoreative sleep. I was dx with rls when I had my sleep study years ago, but had only moderate symptoms. My rls is now quite severe and not only affects my legs but my arms and shoulders. I'm quite used to trial and errors and suppose will be embarking on new ones with a new doctor.

[walkindafloors]

How do you determine if the sleeping is narcolepsey or side effect of the meds? I find myself falling asleep at my desk or even while driving sometimes, scaring the crud out of myself, but figured it was due to the medications. I haven't had a sleep study, having suffered with rls as long as I can remember, but just recently began the sleepiness episodes. Also contributed this to the fact that I go 3-4 nights in a row with 2 hrs. sleep or less then crash to catch up due to the rls and ADHD. Sure don't want to add another dx onto this list, but have wondered how do you know between dx and side effects? I'm taking sinamet CR during the day (which controls my legs wonderfully) then Mirapax and Ultram at night (which works sometimes and sometimes not). Only been doing this combination for less than 2 months. Before this, tried Lyrica which was when I first noticed the falling off to sleep at all the wrong times but it has continued since July. Can't do the Requip thing...passed out cold last December, taking down the Christmas tree with me Scared to give it a second chance!