Wax and wane . . . or permanent?

[ViewsAskew]

Many people with refractory RLS started with mild RLS. I did. In fact, it was the augmentation from treating the PLMs that caused my RLS to flare. Since I first started taking Mirapex 2 years ago, the stats I've seen have gone from 5 to 10% augmenatation to over 30%. Probably because more time has passed with more people being on it long-term. But, alas, that is not why I'm posting.

Because of the augmentation, the side-effects and the fact that the Mirapex, even in increased dosages, no longer worked for the PLMs, I asked my neuro for new meds. At that time, my RLS was starting at 2 or 3 in the afternoon every day. When I started on the Mirapex, it only occurred once or twice a month (admittedly, the PLMs were nightly). He first switched me to Sinemet (if I'd had more sleep and was functional, I'd have said NO). Once dose, and I had severe RLS for 24 hours straight. Since then, I've tried Neurontin and Requip, had the RLS move into my arms, fired my neuro, got benzos and low potency opiates from my primary care, and have had extremely variable symptoms, with none of the current meds stopping the RLS until between 2AM and 7 AM, at which time I may or may not get some sleep and may or may not have PLMs during sleep. Oh, and have an appointment with a new neuro who specializes in RLS on (drum roll please) February 27th.

Given that scenario, I have some questions.

Has anyone had the good fortune to go into RLS "remission" after having severe symptoms for a period of time?

Has anyone had the augmentation reverse when stopping the drug that caused it? Or has it been a permanent increase?

Are there any others who mix and match drugs (both within classes and between classes) without any input from their physician? If so, any advice? My preference would be to avoid addiction and complications

Thanks!!!

Ann

[becat]

Hi Ann and welcome to our group.
I am one person that has suffered for 10 yrs. straight, no exceptions. I had RLS in a severe form as a child. Genetic from both sides of family. I had no symptoms for 5 or so years in my late teen and early 20's. After the birth of my son I was in a state of mild RLS. Things I did at home took care of it.
When I broke my leg/ankle 10 years ago I went into full swing wild RLS.....it never stopped. I sought help, finally, from a specialist about 2 years ago. I could no longer live in a sleep deprived, unhealthy, failing body. I started taking Mirapex and it helped for about 8-10 months. It did not keep me from pain or symptom free, nor did I sleep any better. but it did help some. As the good effects lessened and the RLS grew, they just uped my doage. That was no good either, I didn't react well to higher doses. And had a heck of a time getting that across to the doc.. I tried to take other things and find a suitable cocktail, but I seem to have a fragile system when it comes to drugs. Maybe I'm one of those that just prefers the pain to the side effects of medications. Prefers is strong, maybe I should say accustom. Anyway, I was not able to tolerate the other medications well.
By accident I stopped taking the Mirapex for several days 4-5. That story is the first post at the link below. I've never gone back.

http://rls.org/phpBB2/viewtopic.php?t=293 Mt RLS Mountain.

I have to tell you I have no affection for pain medication, but a small amount of Percodan (1/4 to 1/2 tab) early in an evening has given me new life. I can still have attacks that leave me in pain and unable to function well. But wow, it's a wonder. It's not every day, all day and night long. I'm not cured by any means, but I have hope again.
I agree with you that "hand me down medications" need to be replaced with something more targeted to our RLS problems. I don't think most of us want a lifetime of medication, but if I have to, make it better than it is now.
I can tell you that I'm not in total remission, but I can handle this. I'm in a fit of hopefulness right now. It's not a perfect plan, doctor hasn't approved it yet.........but I see the gatekeeper this next week. I have the medication, just got it over the phone. I'm not looking at this as a possible addiction, I see it as a quality of life issue. I had none before I messed with my medication. I'm treating a disorder, not pimping for drugs to get high.............I want my life back.
Glad your here and look forward to your post.

[ViewsAskew]

I haven't found the resolve to completely stop the Mirapex. Each time I've not taken it, I've gotten no sleep. I haven't tried Percodan, but have not had luck with diazepam, clonazepam, temazepam, or Vicoden. I've taken the max dosage of each of the benzos and while they work well when I am awake, they are not enough to stop the RLS when I try to sleep. On one night I took about 3/4 of the max dosage of the Vicoden and became ill; while being queasy and dizzy I still had the RLS. On those nights I didn't sleep at all. But if I add .125 of Mirapex to my mixture, I can sleep some. So, if I have the resolve and am willing to spend a few nights without it, maybe it will lessen. Reducing it has decreased side effects. The RLS seems to start later on most days now (except today when it started at 3 PM and has not stopped since).

Becat, it's good to hear that there is hope. In earlier posts I recall the conversations about RLS hopelessness. I fall in and out of it at this time, but reading your post in encouraging. I found another neuro, but he's not in my "group" for insurance purposes. I have to change my primary to get a referral, but he can see me in a month, instead of waiting until the end of February. Hanging in another month seems more managable to try and get a semblance of a life: ability to work, to stay on task, to hold a train of thought, remember what I am doing, find the "file" where I stored the word, phrase, or information I'm trying to retrieve, etc. All the things I used to take for granted.

Thanks, too, for the welcome . I have spent two years educating myself about this syndrome, and I post regularly on other topic message boards. I also visit this site often, but never put all of that together to use this board until recently.

Oh, I'm in northern Illinois (Chicago). As I search for a new neuro, if any of you have had good luck with someone, please email me.

Ann
aka ViewsAskew

[jan3213]

I'm Jan

I've had RLS for about 20 years. I started noticing symptoms in my mid-30s. I'm 57 now, so maybe its been a little longer. I'm pretty sure my dad had RLS, but he's been gone since 1979, and, of course, they didn't know what RLS was then. I have walked the floor night after night after night, many nights with my husband right beside me. I diagnosed myself. Finally, about 15 years ago, I went to my GP, who, forutnately, had just been to a seminar at the Mayo Clinic where they had discussed something new, RLS. When I told him my symptoms, he said he thought I had RLS and referred me to a great neurologist at Barnes Hospital in
St. Louis, MO. I've been with that neuro ever since. Long story short, I have had episode so bad that I couldn't sit in a chair at home longer than 15 minutes, couldn't ride in a car more than 30 minutes, couldn't sit through a movie at a theater, let alone get more than 3 hours sleep at night. And, to top it all off, I had the kind of RLS that hurts. I say all that to say this. I don't like to take drugs either. Believe me, before RLS reared its ugly head, I hardly ever took an asprin. But, the quality of my life was nil. I had to do something or I was going to go nuts!! My neuro put me on Mirapex and Klonopin. I've been on both of them, with dosages increased periodically, for about 5 to 8 years. To tell you the truth, I've lost count. Recently, I've had even more pain and have had difficulty walking, etc. I had an appointment with my doc. yesterday, and found out that I now have fibromyalgia. So, I'm on another kind of medication. I just say, thank God there is something I can take. As I said, I have a very good neuro. Please don't take my post as a criticism to you at all, Ann. Each of us has to decide what we want to do ourselves. Sometimes I DO wonder what all these drugs are doing to me. On the other hand, sleep deprivation isn't healthy, either. So, I figure I have little choice. And, I have tried many non-pharmaceutical remedies over the years. I seem to have been "blessed" with a nice "healthy" case of RLS. Ha! In any event, I'm really glad you found us. I am so sorry you have RLS, but, from the tone of your letter, I know you'll be huge asset to our "family". I hope you find us helpul and friendly. We certainly try to be!! Once again--WELCOME!!!

Jan

[lyndarae]

Hey Ann WELCOME Im Lyndarae or Lyn as my good friends have shortend my name it sure is easier to type. How is the windy city anyway? I was reading some of the posts and I wanted to know what some of the side effects of the mirapex are???? My doc just uped mine last thursday I've only been on it for about 4 months. And I haven't noticed any side effects at all. But the way things are going around here I don't know if I would know anyway. I got a new computer today and as I was getting it rls came up and come to find out the guy who sold me the computers wife was just diagnoised. Small world huh. I would like to start a support group here in my little Idaho town as I now know Im not alone.. Lyndarae[quote][/quote]

[PeteB]

Hi Ann - and welcome to the best forum on the Internet for RLS support!!!

I was reading the above posts - and some from the other adjacent boards, and one thing seems to keep croping up. Meds seem to work for a while, and then the dosage needs to be increased, or another complication comes along and the medication is changed, which too works for a while until it also needs to be increased.

I'm wondering here whether or not the medications that the medical profession have so far prescribed, are in some way able to camoflage the effects of RLS to the point where sufferers are able to tolerate it? However, during this period of acceptance, the illness is either getting worse or another (linked?) complication is arising and it too is supressed until it becomes so bad that it becomes noticable.

I know that the medications that people have been taking are absolutely necessary - RLS untreated is not tolerable at all - however, it leaves me with the feeling that the medical preofession (and the pharmaceutical companies?) have been somewhat negligent in their pursuit of a rememdy and idealy a preventative measure for the illness.

The attitude that could prevail is 'It doesn't kill anybody, therefore let's carry on investing in other drugs that save lives which are the biggest money spinners for us.'

RLS treatment therefore takes a back seat. Which explains why, after so many years, we are little advanced in finding a cause and remedy.

It would be interesting to know which pharmaceutical companies (as opposed to Universities) have sought a remedy for RLS.

I hope that sooner rather than later, the pharmaceutical industry takes note of RLS. The patent on a remedy should pay back in time, and the availability of suitable clinial trial patients is certainly not a problem.

Here's hoping............

Pete

[jan3213]

Hi Pete, it's Jan

Boy! This is a sore subject for me!! You certainly hit the nail on the head!!! You can't tell me that with today's advancement in science and research, a cure for RLS couldn't be possible. But, evidently it's not in the best financial interest for pharmaceutical companies. Unfortunately, even when it comes to syndromes, diseases, or whatever term you want to use, the bottom line is money and people suffer.

Jan

[ViewsAskew]

Hi Lyn, thanks for the welcome. I had some difficulty with the Mirapex immediately. The first night I took it, and every other time I had to increase it, I had an entire night of lucid dreaming. Now, I know some people actually want to do this, but I am not one of them! I also had severe augmentation within 2 weeks of starting it.

But after I got used to my symptoms being lots worse because the Mirapex got rid of them, I had a nice 18 months. It was worth it.

The side effects didn't start in until I'd been on it for 14 months or so. First was the songs the got stuck in my head. I would actually have them in my dreams, wake up with them playing, and a particular song could stay there for days. I created cognitive and behavioral interupts, but they would come right back. Of course, they were songs that you didn't even know you knew, didn't want to know, or didn't even know the words to, but they would be there anyway. Next came the insomnia. I would wake up after 5 to 7 hours of sleep and COULD NOT go back to sleep. The songs were singing and my mind was racing. That lead to the ADHD mind thing. I would have several thought patterns at the same time racing around and I couldn't finish anything or stay focused.

When the Mirapex stopped working on the PLMs, we increased the dose. The mind stuff just got worse. And then the rebound started. Now I would wake up with the insomnia and the RLS and the mind racing. And I still had the PLMs. It always worked on the RLS, though. I cut the dose back myself, and it got a little better. I tried the Requip as an alternative, but still had all of the same stuff. Could be because the Mirapex was still in my system, but for now I won't take any dopamine agonists.

Hope this helps!

Ann

[jan3213]

Hi again Ann, it's Jan

Boy! You've had a heck of a time with Mirapex. That just proves that people react differently to medication! I know I've read a lot of posts where people have vivid dreams, etc. and I've never had any of those problems. In general, it's been a Godsend. I have had to have it increased over the years, but I've been on it for quite a few years. I hope things settle down for you. Once again, welcome to our family. Like Pete said, this is a great support site!! Lots of wonderful people here. Take care!

Jan

[ViewsAskew]

Hi Pete, thanks for the welcome. Glad to be here. I read your post and wanted to add some thoughts. Mirapex caused considerable augmentation for me. Then it caused rebound. Then it quit working on the PLMs, but still worked on the RLS. When I started tapering off (at .75 mg), the RLS was often 24/7 and I went several nights with no sleep; the few nights I did sleep it was in fits of a 1/2 an hour or so at a time interrupted by several waking hours. When I started 2 years ago, the RLS was only once or twice a month (I took it for the nasty PLMs). It's been 6 weeks since I started backing off and trying other things. At first, nothing I tried (first Sinemet, then Neurontin, then Requip, then various combinations of clonazepam, diazepam, temazepam, and hydrocodone) worked at all. As my dose of the Mirapex got smaller, the symptoms started to abate some and the other drugs worked for a few hours at a time. I was down to .25 Mirapex pretty quickly, but it seemed if I went lower, I got no relief, regardless of whatever combination of benzos and hydrocodone I tried. By three weeks, the RLS was now only 3/4 of my day, not the whole one. At 5 weeks, I was consistently at .125 of Mirapex and the side effects were diminished greatly, but most importantly, the RLS was now sometimes starting as late at 10 PM!!!! I was now free of symptoms for at least 1/2 my day. Now in the 6th week, I've had 6 to 8 hours of sleep 4 days in a row. Last night, I went out to a couple of haunted houses, managed a 1/2 hour car ride each way, then went out to eat at 10 PM, not getting home until 11:30 and still was symptom free. It did start shortly after getting home, but was able to take my current cocktail (.125 Mirapex and 30 mg temazapam, wait and hour or so and see, then take 2 hydrocodone if needed) and get to sleep by 2 AM and didn't wake up until 11 AM and had NO rebound.

OK, that was a long story and I hope you stuck with me! I guess I'm thinking the the medicine itself is responsible for the worsening, not necessarily that the RLS is worsening. You might be right about the camoflaging part, though. These medicines are not created for the problem at hand, and therefore aren't quite right. Yes, there is a dopamine problem with both Parkinson's and RLS/PLMD. But it's not the same in how it works. I don't know what goes wrong - we get too much dopamine, it decreases the other neurotransmitters, who knows - but since it wasn't doing what needed to be done, it causes other problems. Since my RLS has decreased along with my decreasing the medicine, I can only assume that there is a correlation and it's not that the RLS itself is worse.

Hi Ann - and welcome to the best forum on the Internet for RLS support!!!

I'm wondering here whether or not the medications that the medical profession have so far prescribed, are in some way able to camoflage the effects of RLS to the point where sufferers are able to tolerate it? However, during this period of acceptance, the illness is either getting worse or another (linked?) complication is arising and it too is supressed until it becomes so bad that it becomes noticable.


Pete