oxcarbazepine???

[doety]

Another day, another drug.
Has anyone tried this? I'm working with a neurologist. He knows I think I've been through almost everything, he's really good about whatever I need.

[ViewsAskew]

It's another in the Lyrica, gabapentin, etc. class. Traditionally an epilepsy drug, supposedly also has a positive effect on mood.

[doety]

Dammit.
I just told my doctor that Lyrica gives me visual hallucinations and gabapentin makes me dizzy and sick. He said it was different.
The pharmacist said it calmed down the nerve endings.
He said he gave me a low dose. I wonder if I should take it and risk whatever.

[ViewsAskew]

Oh - it may not be chemically the same! It's just in the same class. It might work very differently. I don't know at all. Sorry for scaring you .

[majoraward]

Oh - it may not be chemically the same! It's just in the same class. It might work very differently. I don't know at all. Sorry for scaring you .

The class thing is a little strange. Requip and Mirapex is in the same class but Requip makes my RLS much worse and it changes my personality but Mirapex seems to work fine. Like a horse and human are both mammals but only one is a horses's a*s.

[doety]

Just had the worst night of my life. About 30 minutes after I took one, my legs started big time. Like triple what it's usually like, I couldn't stop, I danced, ran around, went outside and walked. I finally sort of passed out for an hour and was awakened by my body cramping. Honest to god, some of these medications are simply awful.
I should saw that I'm in withdrawal from Suboxone, what they put me on to get off Methadone and supposedly it's easier to get off of -- that's total crap. I'm not sure what caused this horrible reaction, I just know what happened after I took the oxcarbazepine.
Here it is late afternoon, and I'm still nuts, and have to get through the rest of the weekend.

[Polar Bear]

doety - sorry that you took such a reaction, it seems quite a coincidence that it just happened when you took the new pill. Only way to be sure is to wait a day or two and then try it again...... but who wants to risk another night like you had last night!
Good luck with the rest of the weekend.

[rthom]

Have you asked your dr about something like clonidine to help with the withdrawl symptoms?

[ViewsAskew]

That TOTALLY sux, doety. You've been through the wringer with these meds.

[badnights]

doety, my god. What a horrible night.

But you said you were using this drug to get off the suboxone? When did you last take suboxone?

If you just stopped the suboxone and started the oxcarbazepine, then it seems most likely that you're either experiencing suboxone withdrawal symptoms, or experiencing your baseline, no-drugs, untreated RLS intensity. How bad do you think your RLS/WED is now? Have you been drug-free lately?

I would think this oxcarbazepine is simply not going to do the trick for you. You have severe RLS/WED, and have not responded well to anything except methadone/suboxone - I forget your history, did you try other opioids as well?

I understand your desperate desire to get off the drugs that might be causing you to have central sleep apnea, and having to use oxygen and all, which is a royal pain in the arse,
but have you considered how you will approach life
if it turns out that your WED symptoms are not stopped by anything except an opioid?

[doety]

It's been maybe 8 days since I've been able to sleep. I usually get a couple of hours in the early morning, then I wake up twitching. My brain is fried; I couldn't figure out how to turn on my computer this morning, finally decided to push the on button. Saw my neurologist yesterday....and said give me anything. That seems careless but I really worry that I'll die. I can't operate in the outside world; even my parrot is being weird, probably because I walk around all night.
Beth, good points, thank you. I really don't know...I've been off and on so many things and theoretically I'd like to see what I'm like no drugs, but this is hideous and I'm panicked.
Taking Saboxone worked for some wonderful long months -- one of the best things I've taken for RLS, even though it's really to help people get off heroin. I wanted to stop it for many reasons (I remind myself)...every month I had to drive a long way, pay money, pee in a cup and listen to these "behavioral health" docs talk about tapering. There was no other way to get it and these are some of the few docs in Denver who can prescribe it... After a doc gets to know me, I've never had one not trust me. For other things, I get a two months supply in the mail -- even when I was taking Methadone.l They treated me like a drug addict and kept wanting me to stop taking it -- of course they knew nothing about RLS.
I was just fine, and have screwed it up. At this point, I'm not sure I can get my life back.
I tried the oxycotin and was so hopeful, but it didn't work.
I wrote notes to two docs about 3 a.m. To one I begged for some Suboxone to see if that will work again....and hope he can get over my attitude and prescribe some more. To the neurologist, I told him Oxycotin didn't work, asked if I should I take more.
I guess, at this point, opiates might be the only thing. I got the fact sheet from the NIH, and that's what they indicate. At this point, I'll take the oxygen concentrator and be grateful.
Ann: I told my doc yesterday about your solution and he thought it was great! And said to thank you for adding to his knowledge. Said it makes perfect sense.

[rthom]

Doety

Sorry to hear your nights are so bad right now. Just a note. The medication I asked about before (clonidine) helps with withdrawl because It binds to the neuroreceptors and your body feels as though you are still on the drug--therefore helping to ease off the medication. This helps allevviate the withdrawl symptoms. So if you still want to go off the subloxone it eases the withdrawl. Whatever you want to do we are hear to help. Take care today.

[ViewsAskew]

I wish I could give you a big hug. You need it.

I read the sentence about not sleeping for 8 days and my mind refused to process that. It's like I'm so scared that it might happen to me again at some point that it refused to contemplate what that is like. It's really kinda weird! Even though I can't really think about it, I know how horrible it is to be in that place.

I do hope one of your doctors finds something that works.

[doety]

make it day nine. no sleep at all last night. one of those docs think it all comes from withdrawal from Suboxone. Can't think, will let yall know what happens.
I did call my doc and asked that he order some Clonodine. (thanks)

[badnights]

doety I think you can see the writing on the wall. You need methadone or suboxone to control your severe WED, and you need oxygen to control the CSA.

Once you have that all set up again, you need to learn how to live with it. How to accept it, and move forward and make a life despite it all. I hope with all my heart that this happens quickly.