Deep Brain Stimulation???

Please share your experiences, successes, and failures in using non-drug therapies for WED/RLS (methods of relief that don't involve swallowing or injecting anything), including compression, heat, light, stretches, acupuncture, etc. Also under this heading, medical interventions that don't involve the administration of a medicine to the body (eg. varicose-vein operations, deep-brain stimulation). [This forum contains Topics started prior to 2009 that deal with Non-prescription Medicines, Supplements, & Diet.]
doety
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Joined: Fri Sep 15, 2006 4:25 pm

Deep Brain Stimulation???

Postby doety » Thu Jan 10, 2013 6:47 pm

I adore my neurologist -- I asked for someone young, just out of college, hoping he would be open minded and willing to experiment. So far, it's worked. We talked for a long time this morning. He knows that I've been through all the drugs we know about and that I've had a hard time withdrawing from opiates.

I'm again "after it." Acupuncture, biofeedback, maybe hypnotism, medical massage -- I intend to try it all. All the "coping" I've done has made me so egocentric, I can hardly think of others, etc. Maybe one of those will help and I'll certainly let everyone know. In the very near past, I've felt suicidal. Then I thought there must be things I haven't tried. So, to work.

But for right now -- to get through the night, he suggested I rotate Oxycodone, Mirapex and valium. I'll see how that works.

Just Mirapex is not working. I took it long ago -- .125 mg. and it worked like a charm. Lasted two WONDERFUL years. Then it didn't. Now I'm taking twice that amount and I'm pretty sure the more you take, the sooner it augments. Sure like to avoid that.

The doc also gave me the phone of our university, where they study and try to treat movement disorders. He said they were trying deep brain stimulation (DBS) with Parkinson's patients, and maybe with RLS. I will let you know what happens with that, if I decide to try it. And if anyone knows anything about it -- PLEASE POST.

ViewsAskew
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Re: Deep Brain Stimulation???

Postby ViewsAskew » Thu Jan 10, 2013 10:40 pm

I seem to recall some posts about it awhile back...at least 6 months or a year or more.

Can't remember the context, though.

Keep us informed on your progress.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

doety
Posts: 486
Joined: Fri Sep 15, 2006 4:25 pm

Rotate drugs

Postby doety » Thu Jan 10, 2013 11:33 pm

I'll try rotating drugs. I know many of you have done that.
I'm augmenting on .25 mg of Mirapex.
Do I just drop it and add valium (5 mg) or 5 mg.oxycodone? Or should I take .025 of Mirapex with that?

ViewsAskew
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Re: Deep Brain Stimulation???

Postby ViewsAskew » Fri Jan 11, 2013 12:01 am

You're augmenting while rotating on it? If so, guess you need to drop it completely.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

doety
Posts: 486
Joined: Fri Sep 15, 2006 4:25 pm

Re: Deep Brain Stimulation???

Postby doety » Fri Jan 11, 2013 1:38 am

No. I've only been taking Mirapex and I GET RLS when I take it.
This morning, my doc said why don't I try rotating....he gave me Valium, I already have oxycodone from when he prescribed that before (but it didn't work because I was still withdrawing from that opiate). So he suggested trying the three of them each on separate nights.

I'm just wondering if I should take a bit of Mirapex with the oxycodone tonight, rather than stopping it cold.

ViewsAskew
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Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Deep Brain Stimulation???

Postby ViewsAskew » Fri Jan 11, 2013 2:16 am

If you're already augmented, you may have a hard time getting anything else to work for awhile. Depends on you and how bad the augmentation is. You can always try it without it and then take a bit if you need to.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

doety
Posts: 486
Joined: Fri Sep 15, 2006 4:25 pm

Re: Deep Brain Stimulation???

Postby doety » Fri Jan 11, 2013 2:11 pm

yeah ...I didn't sleep at all (we could have been emailing....). Maybe it's because that Saboxone isn't all gone?
I took oxycodone...and actually had the same reaction as when I tried it before, while I was withdrawing. It put my RLS into overdrive. Jeeeezzzzz.
I'm sure ready to move on with my life, make plans and all that. Obviously I have to work out a way to sleep. Maybe tonight I'll just take Mirapex (and Trazadone) and see what happens.

About the Deep Brain Stimulation. I talked to our university hospital yesterday and they told me they don't use DBS with Restless Legs patients. So POOP on them. It would've been very scary, although my best friend has a friend with Parkinsons who did it and it helped her.
So, onward with the search.

rthom
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Joined: Sat Dec 31, 2011 3:03 am

Re: Deep Brain Stimulation???

Postby rthom » Sat Jan 12, 2013 5:45 am

Doety

Have you had any relief from your symptoms with with any other type of opiate? Was it recent?

doety
Posts: 486
Joined: Fri Sep 15, 2006 4:25 pm

Re: Deep Brain Stimulation???

Postby doety » Sat Jan 12, 2013 4:13 pm

Through the 20 years I have this, I tried everything. I was on something, it wasn't working, the doc gave me Methadone. Of course that worked for a while, then I started falling asleep in conversations, at the wheel, but it wasn't working for sleep at night. Cutting back didn't help. Fast forward years...I withdrew from that, docs gave me a new drug called Suboxone, used with heroin addicts. It actually worked better than anything I'd done...so, another bad decision, I told them I wanted off. Tired of having to pee in cups, be treated like an addict. That's been within months. That was worse than Methadone to withdraw from, may not be off totally now. I'm trying Mirapex (which used to work wonderfully, years back), and I've lined up valium, oxycodone, also. My last two times of trying the oxy have been awful, throws me into super RLS, walk (fast) all night. Could be because I haven't withdrawn completely from the Suboxone. Anyway, I'll listen to any suggestions. Thursday night, no sleep. Last night, many hours and I feel great again. I took more Mirapex than I usually do. I'm babbling, so sorry. Lots have heard this story endlessly.

rthom
Posts: 1530
Joined: Sat Dec 31, 2011 3:03 am

Re: Deep Brain Stimulation???

Postby rthom » Sat Jan 12, 2013 5:27 pm

Well, my question/thought isn't viable given your experience, Jeez I wish I had a viable idea for you.


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