I'm new...

[Dr. Grammy]

My neurologist gave up on me--and I gave up on her.

That is, when I told her I was having severe augmentation on Requip, she said she had NOT prescribed that much, so I must have gotten it from some other doctor. Not so! I own a pill bottle with that exact dose on it, and her name as the prescriber. Looking back, it was not a good sign that on every visit a nurse would ask me what I was taking and they ALWAYS had it very wrong.

Then, when I showed her an e-mail from a RLS specialist (Dr. Buchfurer) and a copy of his book and a printout of the Mayo Clinic algorithm, and suggested that (having failed trials of Sinemet, clonazepam, and Requip), I might try opioids (at least to get off the Requip), she threw up her hands and said that sort of thing was well beyond her area of expertise and her comfort zone, and referred me to another neurologist.

He is a 2-1/2 hour drive away (requiring me to take a full day off work), and can't see me until mid-Frebruary.

I figured I could tough it out until then... but I was essentially doing nothing but eat, sleep, commute, work, and try to fend off full-body jolts without taking more Requip (dose was .5 three or four times a day prn, and 2mg at night).

I visited my excellent psychotherapist, and shared with her that I'd been having suicidal thoughts every day for months. I said I knew they were simply a side effect of Requip, and I wasn't going to act on them, but it was a pretty grueling way to live.

She told me to go back to my PCP and see if perhaps she might do something to help. So I did.

Glory, be! My PCP has whatever certification it takes to prescribe opioids. She heard me out, reviewed the same stuff I'd given the neurologist, and did two things:

1) she prescribed an MRI of the lower back, in case the RLS was somehow related to my sciatica;

2) she prescribed Percocet to help me get off Requip. I don't see any mg. on the bottle (is "5-325" a dose?)

The MRI revealed severe degenerative back disease (no surprise), so I'll be seeing a back specialist (also 2 hours away; the perils of living in a rural area). I certainly don't want back surgery, but she said he might have some new ideas for my PT.

Getting off the night-time Requip was quite an experience. It took a full week. A combination of the Percocet and 600 mg of neurontin per night blunted it a bit, but I spent many night-time hours dealing with full-body spasms/jerks every 10 to 15 seconds. Once, when it got up to every 5 seconds, I washed down an extra 300 mg with a glass of sherry, which got me through the next hour until I could get up and go to work... Then I realized it was not a good idea to drive in that degree of confusion/exhaustion, so I had to go in late.

My next trick will be to see if I can get off the daytime dose of Requip. As of (checking watch) right now, it's been 22 hours since my last (.5) dose. My family is attending a splendid Xmas service this afternoon at a local college, to be followed by dinner, so I'll be sitting for about 6 hours all told (including car travel). We'll see how it goes...

Many thanks to those on this message board who have pointed me in the direction of relief. I feel more clear-headed this morning than I have in years. Hoping it will last.

[badnights]

Hi DrGrammy

Congratulations on guiding yourself through what must have been (and still be) an awful time for you! A bit of knowledge is a powerful thing and how clearly your story shows this. It also shows how important it is that WED/RLS patients take an active role in our own health care.

Even tho your new neuro is 2.5 hr away, that is SO much better than a doctor who is beyond her comfort zone. I had one of those, and when she finally passed me off to someone else, it was definitely for the best. So I have great hopes that your new neuro will collaborate with your PCP to guide your ongoing care. Your PCP sounds fantastic - and that's what you need, someone who is willing to learn.

Do you not think you should get off the Requip complete while you still have Percocet to deal with the withdrawal? How long will the Percocet last?

The 5-325 refers to 5 mg oxycodone and 325 mg acetominophen (the latter is not needed, but most doctors prescribe Percocet as opposed to plain oxycodone).

Continue your grand fight for proper care. You're doing fantastically!

[ViewsAskew]

I am so happy that you've gotten yourself to this point. And feel tremendous gratitude to your PC. I am sad and mad and resigned that you had to go through what you did to get there, though.

I second all the badnights said.

I like the idea of getting off the Requip completely while you're at it. it gets it over with - you have the Percocet and it may not be easy....but it hopefully will help all around.

[Polar Bear]

Congratulations on getting off your nighttime requip.
Wonderful determination.

I hope you have a great day and that it was spent in comfort.

[Dr. Grammy]

Thanks to both of you who've replied! I feel much better without Requip at night!

For two days now, I've managed to get by on just one .5 mg dose during the day. We'll see how that goes this week.

If I can manage that, my next trick will be to see if I can push my bedtime back. Somehow, it ended up being around 8pm., then up for the day at 3pm!

I have a month's worth of Percocet. Not sure what my PCP's plans are after that. In any event, I'll be getting another opinion from the new neurologist in Feb.

[badnights]

A month is plenty of tme to get over ropinirole withdrwawl. But 5mg per day might not be enough to deal with symptoms What will you decide?

[Dr. Grammy]

I'm debating that right now.

The symptom I'm having as I type is horrible--but it's not RLS. I'm having those full-body spasms associated with Requip withdrawal.

What I'm NOT having at this moment is restless legs.

So today I'll see if I can stand daytime withdrawal symptoms, or if I give in and take more Requip at some point. Jeez, that stuff's addictive.

[ViewsAskew]

While the WED/RLS was worse for me, I agree that the PLMWs were absolutely out of control when stopping a dopamine agonist after augmentation. Mine were concentrated in legs; I'd be standing and one would jerk and I'd about topple over.

Those are pretty awful.