Remission?

[jul2873]

I notice that sniel2000@yahoo.com just posted in the Pharmaceutical section that she got herself off of all medications, and is now is a kind of remission. I was struck by that since I talked with my brother-in-law last weekend--who had had quite severe RLS about ten years ago--and he told me that he has been in remission for a year-and-a-half. He's never taken medications for it.

So I have this little spark of hope that maybe remissions do occur. I know that the literature says they are very rare, but if they are occurring in people who have never gone to a doctor with their RLS, like my brother-in-law, or who have taken themselves off of medication, like sniel2000@yahoo.com, then they may not be showing up in the research.

Anyway, that's my hope for the day. Best to everyone,

Mary

[ViewsAskew]

I've always assumed that the person changed something and wasn't aware of it - they stopped a drug that made it worse, they increased their iron, they started exercising. Many people don't know the triggers - and there are so many and many are personal - that it would be easy to reduce it and not know why.

But, it is nice to think that there is something else going on, too, and that any of us might with the WED Remission Lottery .

[jul2873]

You're probably right, but I'm still going to hope )

[EeFall]

Aspartame absolutely makes my RLS much worse. I know there are many people that aspartame makes a big difference. Just think of all the other possibilities out there in our modern environment that might not be so easily remedied by simply stopping putting a sweetener in your coffee.

We have a new manufactured home and someone sends us a magazine for manufactured home buyers (I guess there must be a magazine for just about everybody out there lol) but they had an article about the top 10 things that can make you sick from your new home and it is really amazing the types of things they mentioned. For instance, laminate flooring was one of the big ones (and we have it), it can put into the air of the home different harmful chemicals, especially when it is newer. It could be as simple as moving away from a home that has a certain paint, siding, floor covering, insulation. Maybe even from the lot the house is on, or an apartment, even the air because of different manufacturing processes.

When I inferred it is simple not to ingest aspartame, it isn't. My wife who does most of the shopping reads the labels very carefully when buying packaged products but even then once in awhile when my RLS gets really bad during the day we can usually trace it to aspartame used in some product.

I think remission is possible because like ViewsAskew mentioned someone has changed something in their life. I have also wondered if there are things within our environment that actually help RLS to not occur, that would be something exciting to find. So instead of someone stopping something or getting away from it they have started taking or are by something that helps prevent the symptoms.

[sniel2000@yahoo.com]

Mary......I have a long story but I'll try to make it short. I took myself off Requip in January after the worst RLS I have ever had.... I kept augmenting earlier and earlier, couldn't sit in a restaurant,movie or go out to lunch. Personally, I don't think it was just RLS but it was caused by the meds. It was unbearable to say the least. I decided to to go cold turkey with no doctor assistance since I knew they would just up the dose. It has been hell...I had to deal with no sleep for many months...but I am not working so I could sleep in and that helped. But I developed complete fatigue that lasted for about 6 mos....I lost 10 lbs. My RLS went into remission and I then I couldn't stay awake. If I sat down to watch TV that was it....I slept everywhere and I didn't dare drive to far. The only thing I have been taking is 1 Vicodin per nite because mentally I needed something to let my mind relax as I kept thinking I would get the RLS back. It has now been 8 months and the fatigue is 85% better and I am actually sleeping most of the night. I get small bouts of RLS in the middle of the night...but I can get up and walk around and then go back to bed.

This is only my opinion but I believe the meds, Requip, Mirapex and Sinemet damage your brain function....while RLS is nasty....it's much worse when you take meds for a longer period of time. I, like many people, thought it was the answer. I want to help anyone else who is having symptoms far beyond what they should be....probably caused by the meds. At my worse, I try to explain the sensation as someone pulling zippers up inside my legs. I cried to think this was my life and that's when I decided to do something about it. Relaxing before bed, not watching crime shows..... and Johnson's Lavender baby nightime lotion has always worked wonders for me.

That's just my story and I hope it helps someone else. Also, want to say I have not gained the weight back but stay at the 10 lb. weight loss. I would like to gain 5 back, but my appetite has been compromised and I have no desire to eat too much. But I'm not losing any more. I expect that to get better also. I think it is going to take 1 year to get completely well.

Restless in Napa

[jul2873]

It was wonderful to hear from you. And I am so glad that the remission is holding. Actually, your RLS seems now at about the level mine is--small bouts at night that I can walk off. Or sometimes I just stand and read the news on my computer for 20 minutes. And I do take some kratom to get rid of the hyper alert business. I've never taken any of the RLS meds, and after what I've read on these boards I don't expect I ever will.

I hope you continue to be well. I think you were incredibly brave (also maybe incredibly desperate) to go through that kind of withdrawal cold turkey. All the best to you.

Mary

[ViewsAskew]

Stopping a DA is tough going. The Vicodin may be stopping any symptoms that do occur. It might take awhile before you even know if it's back....and that is a good thing!

[debbluebird]

Wonderful story. I stopped Mirapex about 3 weeks ago. I've had some ok times and some very bad times. I keep thinking that if I wait long enough it will get better. The only thing I'm taking is Methadone. I try to take as little of it as I can. I have been thinking about using the Neupro patch. I keep going back and forth. Some days I think I should do it and other days I think not.

[ViewsAskew]

Wonderful story. I stopped Mirapex about 3 weeks ago. I've had some ok times and some very bad times. I keep thinking that if I wait long enough it will get better. The only thing I'm taking is Methadone. I try to take as little of it as I can. I have been thinking about using the Neupro patch. I keep going back and forth. Some days I think I should do it and other days I think not.

I can only speak for myself - and there isn't much science guiding us at this time that I am aware of. I have a niggling feeling that it's better to wait longer and let our brains heal from the augmentation before we jump back in to a DA.

One of the reasons I feel this way is my recent experience with it. A bit of history - I augmented very badly. I didn't have WED severely, rather PLMS. I was aware of being awake over 30 times a time, let alone the times I wasn't aware. I has almost no stage 3 and 4 sleep. I took the DA to deal with that. Within a week, I had nightly WED at 11 PM. I took it earlier. Then it started at 9 PM. And so on - earlier, more, until it was 24/7. It took 18 months before I learned enough and found a doctor to help. I took methadone alone for 3 years - NO dopaminergics at all. I was really tired from the methadone and kept getting tolerant. I didn't want to increase my dose again, found other opioids weren't any better (most were worse) for me, and eventually I started taking a DA on one night, an opioid on the next. It's now been over 8 years since I originally augmented. I tried rotigitine (the patch) reecently. Because we're supposed to have better luck with it and not augmenting, I was pretty sure it would work for me. Yet, I augmented within a week, just as I did with pramipexole.

It's very possible that it has a better profile for patients who are new to DAs. I'm not convinced that it is any different for those of us who have. It could be and I'm the anomaly, but we need more evidence first. In the meantime, I suggest anyone who's augmented on a DA be very careful using it. The good news may be that if it took something a year to augment, maybe you could take this close to a year, too, before problems. Just in case, I'd suggest everyone watch their side effects like a hawk, just in case.

I very much wish that I am wrong.

[cornelia]

I don't know. There are still patients (I know some of them) who have been taking a low dose Pramipexol for 6 years and still counting, without augmentation.
They are the lucky ones probably and maybe exeptions.

Corrie

[ViewsAskew]

I don't know. There are still patients (I know some of them) who have been taking a low dose Pramipexol for 6 years and still counting, without augmentation.
They are the lucky ones probably and maybe exeptions.

Corrie

Yes, but we now have cases (here on the board at least) of people augmenting at 4 to 10 years. I think it may just be a questions of when, not if. Or, the people who do not eventually augment are the anomalies, not the other way around.

[EeFall]

I don't know. There are still patients (I know some of them) who have been taking a low dose Pramipexol for 6 years and still counting, without augmentation.
They are the lucky ones probably and maybe exeptions.

Corrie

Yes, but we now have cases (here on the board at least) of people augmenting at 4 to 10 years. I think it may just be a questions of when, not if. Or, the people who do not eventually augment are the anomalies, not the other way around.

I took Mirapex the first time for about 6 years before I augmented, that was almost 8 years ago. Believe me I am not one of the lucky ones. I am beginning to think that it may have contributed to the terrible problems I am now having. I guess I have augmented over a dozen times since then and if I stay off Mirapex for a few months then it will give me 1 or 2 months of peace and it augments again. My current doctor at Johns Hopkins says that once someone augments they should never take it again.

Along with augmentation I have taken just about every medication out there at one time or the other that is available for treating RLS. If you think about it my brain has gone through the wringer. I'm beginning to think that not only should one never go back on it after augmentation but those like me who have gone back to it so many times have perhaps done irreparable damage to the chemical balance of the brain.

Here I have finally gone through the detox and stopped all medications and have started on only methadone again, last night it appeared to work, although I was up several times during the night. I counted on it working tonight and it is like I have taken nothing. There is more going on than withdrawals and WED alone I fear in my case. Of course one of the meds I have stopped taking is pramipexole (mirapex) and God only knows what it is doing to my mind.

Today I was very groggy from taking only 2.5 mg of methadone in morning & lunch, and then 5 mg in the evening. I am more groggy now than when I took Lyrica, pramipexole, and methadone all at the same time before detoxing! I can feel the methadone, very strong, yet I am too restless to even attempt to go to bed. I am suppose to go back to work next Monday yet I can't know from one day to next if the methadone will even work!

Something is just not right. It probably still has something to do with augmentation or of the multi-augmentations I have gone through over 14 years. Nothing seems constant anymore and my meds change wildly from day to day.

[debbluebird]

I started Mirapex in 1997. I believe that I started augmenting in 2008, but I didn't know it at the time and neither did the doctor. He just kept upping my dose until 2009 when it became extremely difficult. I went off of it then. I recently took Mirapex two more times. The second time I didn't augment. I just wanted to see if I could get off of it. This last time I believe that I did augment because my symptoms became worse, and occurring in the morning and afternoon. In other words 24/7. I have not been off of it again for 3 weeks tomorrow. Just in the last couple of nights have my symptoms have become less severe. I'm not sure of my next move. Right now I'm taking Methadone. I have been taking that for two years.

[EeFall]

I slept 7 hours last night! I had to get up a few times just to go to restroom, not sure what is going on about that now but one bathroom break I woke suddenly from a dream where I really had to go and I did really have to go! I am just going to have to back away from this whole situation, obviously my body is not working at an even keel. The withdrawals, WED, the wild changes in my medications, the lack of sleep - I am just too close to this thing to report on it accurately.

One day it works like it should and I think it is a-okay and out of the woods, the next day I don't think it has worked at all because I have 4 hours of insomnia I can't micromanage the changes that the doctor has me going through. I just have to chill out! The other day I said on one thread if you get anything out of it understand the importance of emotional/mental state when going through detox - I still think that is correct, you can probably see that I am all over the place from day to day going through this - I'm living it and it is difficult to see the forest for the trees, I am so busy looking at the the day to day changes I can't see the overall progress.

[EeFall]

I started Mirapex in 1997. I believe that I started augmenting in 2008, but I didn't know it at the time and neither did the doctor. He just kept upping my dose until 2009 when it became extremely difficult. I went off of it then. I recently took Mirapex two more times. The second time I didn't augment. I just wanted to see if I could get off of it. This last time I believe that I did augment because my symptoms became worse, and occurring in the morning and afternoon. In other words 24/7. I have not been off of it again for 3 weeks tomorrow. Just in the last couple of nights have my symptoms have become less severe. I'm not sure of my next move. Right now I'm taking Methadone. I have been taking that for two years.

We have a very similar timeline and experience. Probably has to do with the doctors learning about this as time progressed. Switch these dates; 1997 = 2000, 2008 = 2006, and 2009 = 2008 and since then it has been all about stalling for time when I could next take Mirapex again - all about trying other medications that would replace Mirapex - and nothing could until now when I am only taking methadone, just as you have been doing now for 2 years.