More on stopping Mirapex (sorry....)

[veldon7]

Great job everyone!! I envy you all! I want to stop the Mirapex too! I have some Percocet and Amitriptyline, but I tried just a low dose 10 mg of the Amitriptyline and I was pretty tired at work. A Dr. gave it to me for migraines a couple yrs. ago.
I am having Migraines every night now, I was taking Topamax too, but it doesn't do much for me, maybe I need to up the dose. I have an appt. with a Neuro. Oct. 2nd, but I think I am gonna have to go back on the Topomax before then. Jakesmom, it's good to hear the amitriptyline is working for you, I'm afraid it will make me gain more wt. The Mirapex already causes it, even though I am on a low dose. I really need to be more strict on what I eat and cut out sugar and salt!

[debbluebird]

It is very difficult not to gain weight on these drugs. They make you want to eat more and you don't feel full. We probably have all gained weight.

[doety]

Good morning -- and I mean it. Two nights of sleeping and I am so grateful. Not sure what the plan is now...
I think I started augmenting on Tramadol...when I took it at night, I would get WED immediately. Guess I'll use Methadone (last night: 10 mg) for a while although (Ann, you're right) I don't like opiates. Maybe I'll mix in some Tramadol.

I got an email yesterday from someone at Johns Hopkins asking if I'd like to be part of their study on glutamate and of course I said yes. I'll get a call to be interviewed in a day or two. I'm so heartened to know they're doing all these studies.

[ViewsAskew]

Good for you for being in the study.

And hoorah for sleep!!!!!!

[Polar Bear]

Doety - you sound upbeat

[doety]

I'm still groggy -- using Methadone to sleep at night. I'm sure I'll be able to use less and less and hope to think more clearly.
And in case someone is actually paying attention to all this; WARNING. I sounded very casual in that last post about "maybe I'll throw in some Tramadol." NONONO. My doctor even wrote on my bottle: Don't mix Methadone and Tramadol. I don't do that, and have no idea why I wrote that.

About the study:
I've talked to the very nice folks at Johns Hopkins several times. It never seemed like it was worth the effort and inconvenience, not to mention the hell of withdrawal,e to go to Baltimore just to be a lab rat (although I sure appreciate it when others do that). I haven't decided definitely, but I'm intrigued with the idea of participating in a study about glutamate. Once you tell them you want in, you don't go for about two months. You stop all meds (something I've theoretically wanted to do for a long time) for 10 days. They pay your plane ticket, you stay at their facility, they monitor your "sleep." At the end, they do an MRI that is supposed to track glutamate.
I don't understand what glutamate is, but I guess if they get enough research subjects they may be able to tell about the relationship between the amount we have and the affect it has on WED. (of course all this begs the question of what it's like to be off everything for so long, or whether I can stay in bed all night or even how I could be on a plane that long without pulling the rip cord. Maybe I could go on a train?).
Anyway, when I make the decision, I call them and they do a long interview to be sure I'm a good person to study.
I have an idea: Why don't we all go together!!! Wouldn't it be fun to meet each other??

[badnights]

I have an idea: Why don't we all go together!!! Wouldn't it be fun to meet each other??

I went through the process as far as the long interview. I was SO impressed with Dr Allen, what a nice man, and so knowledgeable about WED. But turns out I am being placed on the back burner, in case they need me, because I live so far away and because I will be complicated to withdraw from my meds. I guess I am still on the list but I'm not holding my breath.

I'd love to meet everyone! What a blast. We should win a billion dollars, devote a chunk of it to research, a chunk to awareness, and the last chunk to a big old party, we'd all get together (all 4000+ members of the board?!). We'd all be walking around making jokes about walking around, and everyone would get the jokes.