Symptoms or Withdrawal?

[lindascott]

I don't know how many years I've had WED/RLS now - about 7. I had some trouble with it and would drink some tonic water at night, which usually helped. Then after a night as a new patient in a sleep apnea clinic, the doctor told me my legs moved a lot in my sleep. I told him I did sometimes have trouble at night with them getting restless, and being a passenger in the car for long drives and he said, "I have just the thing for you," and gave me a prescription for Requip. Oh if I could only go back and have been smart enough never to have filled that prescription!

From then on it was all downhill, with the restless legs getting continually worse. After a couple years it augmented into my arms, and began driving me crazy earlier in the day. I went to a neurologist and he told me that after it augmented like that, I would never improve; it was going to stay at that level. I didn't want to be on any more dopamines and he put me on percocet 5/325 two a day.

I started taking 1/2 of a pill late morning, 1/2 of a pill late afternoon, and 1 pill before bed and this has worked wonderfully for years. He dated prescriptions for me for 6 months at a time and I would see him every 6 months. Then this year, I had an early August 6 month appointment, went in, and the office was dark and closed. It was my worst nightmare! To shorten this story I'll say quickly that I found his ex-partner at their other location, telling him hysterically that I needed a prescription and no one had told me my doctor had quit, taken a month off (story from ex-partner), and would be opening a new office in a few weeks. He saw me that day, gave me the prescription, and let me know he didn't want me to change to his practice and that I should wait and go back to Dr. X when his new office opened.

It finally opened a week ago and my husband went in with me. We were angry about how he had just disappeared. He's part of a big group now and his secretary told me in hushed tones that none of it was their fault and they hadn't been able to notify his patients, blah blah blah. We we saw Dr. X, there was no apology, he took no responsibility for leaving without notifying his patients, and when I said, "Don't you have a lot of patients looking for you now and not knowing where you are?" he shrugged and said "probably."

Then he blamed it on the new group he was with, saying they were supposed to send letters to his patients, notifying them of his move, but they still hadn't gone out. Well my appointment had been August 7th. It is now September 5th and I still didn't get a letter.

The point of all of this is that this has scared me badly. I began to worry about being dependent on this man for these prescriptions and then - he didn't get hit by a truck, he didn't die, he did worse - he just disappeared on me.

I decided I'd like to get off percocet. He's no help about that, doesn't seem to care whether or not there may be withdrawal symptoms. I can't stay dependent on this guy. He prescribed Horizant, which is not a dopamine but my co-pay is $75. I decided to try it for a couple months to maybe help me get off the percocet.

At times my symptoms start to come back until I take that 1/2 pill, or my nightly pill. I began to worry and wonder if the symptoms I am feeling are withdrawal symptoms between pills rather than actual rls symptoms. Last night I took the first Horizant and less percocet before bed. I got very drowsy and went to bed, only to get back up with symptoms, but this time I was drugged on top of that. Went back to bed a couple hours later and slept for an hour and then had to get back up.

What do you think? Is this withdrawal from percocet or is my rls just this bad? How on earth am I every going to be able to find out which it is?

I've poured this out to you and maybe not as clearly as I would hope, but my goal was to see if my rls maybe wasn't as bad as all the pills have made it become. I don't know how to reach that goal or get the answer!

Thank you all in advance for any ideas or experiences you can share to help shed some light on this!

[ViewsAskew]

Needing opioids is a scary place for many of us - just exactly for the reasons you described (plus others). Hopefully, you will find that you can use Horizant and that it controls your symptoms; if not, there are other options.

I have no way of knowing whether this is withdrawal or breakthrough WED/RLS symptoms - wish I did. I can only think of two ways to find out.

One is to take nothing and reduce the opioid until you are free of it. When it's out of your system, you'll know. You WILL be miserable for a few weeks, no question. But, you'll know.

Second is to use ropinerole again. You augmented long ago. So far, everyone here who's done this has found that once the DAs are out of your system for awhile, you can use them again....for awhile. You WILL augment again, but it usually isn't that quickly (though it can be). If you had a several months or a year before you augmented the first time, you likely have some time before you augment again. Once you have stopped the opioid using ropinerole, you can stop the ropinerole with ease. You'll know what your level is.

Either way, after stopping you can then try Horizant (or one of the many other drugs available) to see if they work.

I augmented severely, too, and I can use pramipexole again as long as I don't take it regularly. For a couple years, I alternated it with methadone - it kept me from being dependent on methadone and kept me from augmenting on pramipexole. So, that is yet another option for down the road.

[lindascott]

Thank you ViewsAskew!

You say, ". . . One is to take nothing and reduce the opioid until you are free of it. When it's out of your system, you'll know. You WILL be miserable for a few weeks, no question. But, you'll know."

This is where I'm confused. While I'm being miserable for a few weeks and ready to run in front of a truck, I won't know whether that's from withdrawal or from RLS symptoms. I have to go through weeks of misery, but that should change and just go back to WED/RLS?

That doctor never told me these two pills a day would get me so hooked that this would happen. This is such a nightmare!

[ViewsAskew]

I don't think you can know until it's over. There is conflicting info about withdrawal from opioids. There can be symptoms that feel like WED, but are not WED. How to tell them apart? No idea.

It's possible Dr B will know more about it.