Need help & advice

[Guest]

I am on mirapex and am having problems---I am so drugged that I hardly functionm, I feel rls symptoms all day & night with only occassional relief. I feel anxious and jumpy & have a hard time typing, writting etc. (Is this normal to have those side affedts when starting mirapex?)I am taking >125 @ 2 x a day. This is a low dose--I willing to try a larger dose, if that will work.

Do you usually see a good result with mirapex--do you feel normal while taking it or do you still have symptoms.

I have tried sinemet, requip, klonopin & Neurotin . I take 10 mg. of percocet every night (It's the only thing that is working)

I need drug suggestions----or what has worked for you. (I have read all the material from the mayo clinic, and other medication outlines)

I see the doc. tomorrow--and have no idea where we'll go from here.
I have rls 24-7. everyday & every night. Upper & lower body.

Thanks,
knitbebe

[ViewsAskew]

It sounds like you are in RLS Hell, and what a awful place to be. I hope that your doctor works with you tomorrow and helps you to get to a better place. There could be many things going on here, and hopefully you have an RLS-savvy doc. If not, your knowledge and education may be your best bet for getting control of this, if your doctor will listen.

I'm going to ask a bunch of questions - not being nosy, just trying to understand.

How long has your RLS been 24/7?

What happened when you tried Sinemet and Requip? How long were you on each of them?

How long have you been taking Mirapex?

.125 mg twice a day is very, very small. But taking more won't help if you have augmentation from it or the other dopamine agonists. Also, twice a day isn't enough alone to control 24/7 RLS, as Mirapex lasts about 6-8 hours per dose.

Without knowing more, and since Percocet works, maybe talking to your doc about switching to opioids is the best course right now. This is based on what the algorithm would recommend, too. You know it works, and it will let you rest up from the other drugs that may or may not be contributing to your problems. I would consider something other than Percocet, however, because the "cet" part is acetiminiphen, and you don't need that in your liver every day. Oxycodone and methadone and one other that I can't remember, all don't have any added pain relievers and are better for daily use.

Once you have a month without the other drugs and NO RLS, you can re-evaluate with your doc. If you are sure you have augmentation from two or more DAs, you should not ever take them (per the algotithm) and should switch to an opioid or Neurontin. Since you've already tried that, it seems that an opioid it your best bet.

20% of people cannot take Requip or Mirapex because of side effects, augmentation, or because they don't work. Many people have no side effects and they could write and say how wonderful their experience was, but that doesn't mean it will automatically work for you! The only thing that counts is your experience, and it sounds like a miserable one. I know I wouldn't want to take it anymore if I were feeling like you are!!! Especially is you know that you didn't feel this way before. That said, if you have only been taking it for two or three days, it does take about two weeks for side effects to wear off and to normalize. But, if it has been at least that long and it's not getting better, it seems silly to continue feeling miserable when there are things you know help.

Ann

[knitbebe]

Thank you so much for your reply. I have been taking miapex almost 3 weeks. I suspected that part of the problem was that I took only twice a day. I sure wanted mirapex to work & am confused as whether I am experiencing augmentation or if just break through rls since I'm only taking it twice a day. I am pretty sure he is going to suggest increasing the mirapex to see what happens. I'm considering doing it for a week (but only a week) just in case it does work or to rule it out. If I continue to take mirapex I know that I will be a zombie for a while.

Of course it is hard to tell what is going on when you have it 24-7 with severe sleep deprivation! It all gets rather confusing.

Klonopin is the only drug that has worked-it wasn't working as well-but still working (I stopped taking when I was pregnant with my son----I only took ambien & did very well) This was only 2 1/2 years ago. I did even better up until my son was a year (he is 2 1/2 yrs. old now) So my rls has progressed quickly --Through routine blood work my doc. discovered that I am hypothyroid. I know that it can contribute to rls--


I would consider klonopin--but am very leery since withdrawl is horrible--and since I would need to take it daily--dependency will occur. Is there any drug similiar to klonopin that might work?


sorry about the rambling and spelling---difficult for me to process my thoughts.

thank you for your reply,
knitbebe

[ViewsAskew]

You can try any of the benzos - most of them seem work similarly for RLS (there are few studies, if any), but all have the same risk of dependence. If you had a tough withdrawal before, you probably will again. Temazepam has a much shorter half-life, so may work better if you had fogginess or grogginess the next day. Dependence alone isn't necessarily the worst thing that could happen; to me, never sleeping well again is!

It is so tough to weigh the choices you have - feeling lousy, no quality of life, dependence, fatigue, addiction, etc. But, ultimately for me, quality of life wins. I want to see enjoy my family, love my work, and live with gusto and joy. I can't do that when I am exhausted or when the drugs I'm taking make me feel horrid (or just don't do a good enough job).

I made a choice that I wasn't really living without the major drugs. You may have to decide which is more important to you. It is not a decision to make lightly, but there are many things you can do to make it safer and to feel more comfortable that you made a good choice for you.

I sense that you are not sure you want to try opioids. Many people are terrified of them. If you decide you want to hear more about them, several of us here take them and would provide our take on them.

It is really hard to see what works when you don't know what else is going on. I'm not sure when you tried the Requip or Sinemet, but if it was recently, they could be contributing to your current problem.

It may take awhile, but please don't settle for feeling halfway OK! With the right combination, I do believe that 98 or 99 percent of us can feel pretty good. It's just finding the right drug or combination that is hard.

Ann

[knitbebe]

You're so right about the quality of life--I am missing my baby grow up & that is hard. Just today my 2 1/2 yr. old told my neighbor that mommy is sick & sad.

If I do indeed continue the mirapex I will only do that for a week--if I'm totally out of it--but no rls I'll stick it out--but, if not a whole lot better--I'm going to move on.

I'm also going to be firm with my doctor about seeing him frequently --every week or every other week--but the come back and see me in a month is just not going to cut it anymore.

I am taking oxycodone (mistakingly said percocet) at night and it works but it does give me insomnia and have to take ambien with it--Is there another drug I could try for night that would help me sleep--and not need ambien.

I really appreciate the help--it gives me alot to think about--questions to ask for my appt. tomorrow.


Thanks,
knitbebe

[ViewsAskew]

Different people have different experiences with opioids, as with all drugs. I'll tell you a little of my background.

I had very mild RLS (once or twice a month at most), severe PLMD. They treated the PLMD with Mirapex. Within two weeks I had daily RLS. Thus, we started a 18 month nightmare of increasing doses and increasing RLS until I had 24/7 RLS for several months.

It took 9 doctors, an incredible educational process for me, and about 10 or 11 drugs until I had a solution. Methadone. It isn't for everyone, but it gave me my life back. Not exactly the same one, but one in which I was an active participant. I am very lucky - the RLS is now completely controlled by a once a day dose. I do split the dose, but just because I'm paranoid. I take 5 mg at about 8 PM and the remainder 1/2 hour before bed, and a two magnesium tablets and a mega-B vitamin as I go to bed. No RLS. None, nada, zip.

It does give me a slight feeling of awakeness, yet as soon as I go to bed I can sleep. No, that's not quite right - I am completely NON-foggy! During the day, I can still have some not perfect days, and it always takes me awhile to wake up (have been like that for 46 years). The Methadone makes me feel the "just right" amount of awake and removes any fog from my brain, but not tiredness from my body. I LOVE that feeling, having missed it for so long, so I like to stay up and feel it. But my body is tired, and my mind isn't racing. Both fall asleep within 2-5 minutes each night unless I screwed up the timing. I never need Ambien or other sleeping meds.

You might have to try something like oxy during the day (great that is makes you feel awake, take your last dose at say, 7 PM, then try something else for night. Some of the opioids so make people tired; maybe that would work at night. Or Methadone - it really does work for me, and I do not have to take it during the day. The RLS that the other meds caused is much better, though it will never go back to the prior level.

Have you had your ferritin tested? It should be at least 50 for an RLSer.

Have you tried the lifestyle things? Remove caffeine, alcohol? Get your B-12 checked? Checked to make sure you're not taking another prescription or OTC drug that makes RLS worse? There are several others, all listed in the New to RLS section in the sticky posts.

Good luck tomorrow. Let us know how it goes.

Ann

[RLJames]

No RLS. None, nada, zip.

Ann,

Is this true? Absolutely no RSL with methadone? Wow!

I'm heading toward methadone. My doc has me on Ultram right now and it helps with my sleep at night--also takes Lunesta. But the daytime RSL is still there. My doc wants me to go on methadone someday. But I'm a bit apprehensive.

[ViewsAskew]

Yes, absolutely none. Well, unless I screw up with lifestyle management. But, if I keep my med times right and keep my lifestyle stuff right (right level of exercise, right amount of vitamins and supplements, no caffeine, etc.) I do not have any.

I used to have RLS 24/7, but that was because of augmenation. I don't know what it would have been without that. Someone else who had 24/7 RLS but not due to augmentation, might have to take it twice a day, or even three times.

Ann