The first post by Romy is contained in my reply here in two fragments.
Here is my reply to Romy.
I was first diagnosed with RLS then Narcolepsy (I have cataplexy, and all the other symptoms) I am on Xyrem-the new drug from Orphan. But when I started the xyrem they took me off of all my rls drugs, I was on neurontin, mirapex, oxycontin and ambien. I had had horrible horrible struggles with RLS and this combination helped control it well for years. Then to go on the Xyrem I went off of all those(last oct/nov), and I thought I was fine, but the RLS has been creeping back the whole time and I really didn't recognize it (I think I was in denial)
Now your case is for the book. I am well aware of Xyrem and the company making it available. As you may have heard there is now an off label use for it in patients with severe fibromyalgia.
I made a pain doctor acquainted with Xyrem and its use and now he is using it with some of his patients. He and I discussed what drugs can be retained with the use of Xyrem. He only wanted to be sure that his patients do not get into respiratory difficulties so he usually orders a sleep study for ruling out sleep apnea.
Due to the fact that Xyrem is quite fast acting and has a short half life in the body, we found that many medications can still be retained with some minor change in scheduling. I recall a patient who had been taking 12 medications, eight out of them had an effect on the central nervous system. This patient, for example, was allowed to use all of them with the rescheduling of one (morphine sulphate).
My point is that taking you off all the medication was probably unnecessary and not following up on your resulting problems seems cruel.
I can understand why doctors err on the side of caution. Its their skin and your discomfort. My point is that it is worth negotiating with the doctors and one should definitely letting him/her know the discomfort and pain one has to endure due to some medication change.
But now I am back on all the old RLS drugs, except ambien, but only for the last 3 nights, and they have been ok, but not great, still feel the RLS.
You may have to work out another regimen if you are still on Xyrem. And figure out which works the best for you. Your RLS may have changed. Mirapex, Neurontin, oxycontin, and ambien seem to me a bit of an overkill. Especially the first two, you may only need one or the other.
Did Xyrem help your cataplexy?
It is the Xyrem I am referring to in some of my previous posts. It is a fantastic drug to correct sleep abnormalities, has few side effects. It is too bad that it acquired such a bad reputation as a date rape drug. I think it was prohibited in the US in the nineties and still is prohibited in the United Kingdom.
Please visit the topic ORP on this forum (the General Topics Forum) and please add your comments. When I said it was for the book I meant it.
There is someone else on the Discussion Board also with posts concerned with possible narcolepsy in addition to scoobydo.