Reversing Restless Leg Syndrome

[buglegs]

Diagnosed with RLS / PLMD back in 2001, started on 0.25 mg Requip increased to 4 mg over the years. The requip stopped working and I was switched to Mirapex which worked great for about 7-months. I started having trouble breathing, felt as if someone had put a plastic bag over my head causing suffocation, stopped Mirapex and restarted requip 4MG at night. I'M CURRENTLY EXPERIENCING AUMENTATION, so I'm getting about 2-3 hours sleep each night. During my sleepless nights I've surfed the internet looking for answers because I just don't feel like I can continue living with these symptoms. Well during my computer searching I located a Dr. James Anderson, Anderson Podiatry in Fort Collins, Colorado that is offering a miracle cure. Dr. Anderson claims that Restless Leg Syndrome can be reversed with Nerve Decompression Surgery lower leg area called the Peroneal Nerve Tunnel. He has a book out called "A Perfect Nights Sleep" if this is for real I'm all for it. Has anyone heard of this doctor and what do you think about his idea? I'm seriously thinking about flying out to Colorado because I'm at the end of my rope.

[Rustsmith]

The sort of surgery that you mention is frequently touted as being a cure for RLS. Most individual who have had the surgery performed say that it didn't help. You would be far better off finding a movement disorder neurologist to treat your augmentation and if that doesn't work, educate the doctor who has been treating your RLS. Here are a couple of publications that were written to educate doctors to handle situations such as yours:

https://www.mayoclinicproceedings.org/a ... 0/fulltext

https://www.mayoclinicproceedings.org/a ... X/fulltext

[Polar Bear]

I don't believe there is a miracle cure for RLS. I don't believe either that it can be reversed.... my opinion only. However, it may be possible to control the symptoms.

Your dosages of Mirapex/pramipexol/requip have been way too high. When I was first started on Requip is around 2007 the leaflet insert said that it could go up to 4mg, and so my doctor eventually took me up to the 4mg, actually I got the length of 5mg. I also badly augmented. (I am a sufferer of 40 years).
You were initially started on Sinimet which should never be taken regularly, it works well and quickly but it will inevitably very speedily cause augmentation and fortunately you only stayed on it for one week. It should only be taken randomly, for a long journey etc. or for the occasional night.
Our RLS Experts nowadays would say that the max daily dose of Requip should be only 1mg and the max daily dose of Mirapex/Pramipexole is much less, somewhere around .25mg.

Your current dose of 4mg Requip is too high and as for previously taking 7 - 12 mg, well, that is just horrific. Also if you dropped immediately from the higher dose down to 4mg, that is not a good idea. It is necessary to taper carefully under your doctor's supervision.
You are likely augmented. Each time you increase your Requip it may help for a short time and then the symptoms of augmentation start again.
The solution is to get off the Requip altogether. This is not easy and you will sleep very little for the first week or so.
Your doctor may suggest using Pregabalin or Gabapentin which is a good RLS medication but unlikely to deal with the withdrawal symptoms while reducing the Ropinerole. What you really need is a doctor who is willing to prescribe an Opiod to see you over the withdrawal period and possibly even on your journey going forward.

Also, was your Ferritin Serum ever checked, this is important, it is not part of the normal blood panel and needs to be requested. Some labs accept 20+ as normal, others say 30 or 50. As an RLS sufferer we want ours to be up around 100.

If you can get to an RLS Quality Care Centre this could be your best option.

[buglegs]

Thanks for your reply....I'm going to see my neurologist on the 22nd and hopefully come-up with a plan to slower taper to zero on the requip, probably gonna be rough from all I've been reading about it. My Iron levels are in the normal range like 100 not sure about the iron concentration levels? Hopefully I can gradually stop the requip, then 10-12 days drug-free and my dopamine receptors will hopefully reset. The symptoms should return back to the intensity of first being diagnosed, prior to any of the Dopamine Antagonist. After giving my dopamine system time to start functioning again without any kinds of meds (this is gonna be the tough part) maybe the GABAPENTIN / HORIZANT will combat the RLS by itself, hopefully. Anyways thanks for your response, wish you well..

[Polar Bear]

When you say your iron levels are around 100, make sure this is your Ferritin Serum level.

When I tapered from 5mg Requip I did it much slower than most folk. It took me 10 months doing very minimal reductions at a time and I did it without difficulty. However, I also had the support of Pregabalin and Cocodamol. I was prescribed Pregabalin to treat my diabetic neuropathy and it was very fortunate that it also benefits RLS. I was never at any time without medication. The Pregabalin and Cocodamol were raised as the Requip was reduced and my treatment continues to be P & C.

I hope you have a positive appointment with your neurologist on the 22nd and wish you well.

[sleepdancer2]

Just want to co-sign the advice to wean. You may find some doctors don't take it seriously, but stand your ground. I stopped abruptly once about 15 years ago and some of the effects proved permanent. Once I got off meds after augmentation I did not have the luck of my RLS/PLMD resetting back to preaugmentation status. It was a long haul of trial and error. Keeping myself nutritionally sound in all those things that support nerve and muscle health has been my longstanding habit. I had a TENS Unit that I had been prescribed for low back pain, and I found by accident that using it before bedtime as prescribed for my low back/buttocks helped calm my legs. There seemed to be an accumulative effect, as the longer and more consistenly I did it, the better my legs did. Several years later I finally can say I hardly ever needed to use it. A recent leg surgery has caused a flareup, but a few months later here things have calmed back down considerably.

One thing that happened with my augmentation was my brain seemed to be stuck in a repetitive pattern as well as my legs in their PLMD pattern. As I tried to sleep, a single thought would repeat itself endlessly for hours. It was maddening. Finally figured out soft rock oldies on low volume helped my brain not get stuck in the repetitive pattern. I theorize that because the songs were familiar, I didn't feel a need to stay alert to listen, yet my brain had incoming data to process so didn't get stuck. All I can say is I'd tried every type of music and sounds and this was all that worked for me.

Sorry if this is a lot more than you needed. Don't make it on here as often as I once did so maybe there will be something here to help another reader. My older posts have probably fallen into the abyss by now. Good luck with things.

[Rustsmith]

Sleepdancer, there were a couple of research papers published about five years ago where they concluded that augmentation produces changes to the brain's structure that are permanent. Virtually all meds cause side effects and usually when one occurs, the doctor says that the side effect will go away once you stop taking it, but it seems to me that my doctor has been wrong more often than are right when I hear this. I think it is because doctors learn about how to use meds to treat illnesses and not about the side effects that they can cause, how to properly take a patient off of a med they have been taking for an extended time or of the long term damage from treatments that don't carry an FDA black box warning. Although it can be dangerous to listen too closely to Dr Google, I am finding that I have to teach myself enough medicine to be able to tell my doctor what to do to provide my care rather than just relying upon my doctor's advice.

[buglegs]

Well I went to my neurology appointment today at the VA Hospital was given enough Requip at lower dosage in order to taper-off..from 4-MG..Instructed to drop 0.5 every 14 days and given GABAPENTIN 300 MG TABS...take (1) TAB in the mornings, (1) TAB at 12:00 and (3) TABS @ bedtime with the TAPERING schedule of Requip. Also given CYANOCOBALAMIN 1000 MG take (1) TAB DAILY...I'll continue posting my results as I drop the Requip dosing and continue with the GABAPENTIN dosing....This RLS is really tiring, especially once augmentation starts..Hope everyone is doing good and able to get some rest tonight.

Michael

[Polar Bear]

You appear to have had a positive appointment at the VA Hospital and I wish you well as you further reduce your Requip.
The journey is likely to be difficult but you know this.
I remember the day I was finally finished with Requip.... feeling like I had just conquered Everest.

[buglegs]

Thank You Polar Bear for posting a response..this forum really seems to help me mentally, just knowing that I'm not having hallucinations of these weird feeling not only in my legs at this point but all over my body, like cycling around to different muscle groups. I got home late last night from the VA Hospital in CHARLESTON, S.C. I took 900 MG of Gabapentin and actually 2-MG of Requip at 8:00 PM, watched TV / computer stuff started getting really tired, no active RLS, felt like I could go to sleep. I went to bed (CPAP MACHINE ALSO) at 11:00 PM, seems like I probably went to sleep, took like 10-15 minutes of trying to shut-down my thoughts in my head..kinda like that little disclaimer running along the bottom of your television or other stories when the news is on.. Well I slept all through the night, one time up to go to the bathroom and right back to sleep. I woke-up at 6:00 AM, went back to sleep and woke-up at 7:45 AM, very slight RLS acting up in right leg, not much, just barely could feel it. I got up, felt rested by groggy feeling, this is the longest I've slept all at once in YEARS!! Made a cup of coffee and went outside with my two chocolate labs. Back inside now..raining here..no active RLS at the moment, getting ready or should have already taken another GABAPENTIN 300 MG @ 12:00...Anyways, I'll keep everyone posted that cares to follow my adventure of becoming REQUIP free..Thanks Polar Bear!!

[Polar Bear]

What a great night you had. I also use a cpap machine and find greatly helps my sleep.

[sleepdancer2]

Thanks Rustsmith for the prompt to do some reading and see what I can learn. I wasn't aware of discussion of permanent damage with augmentation. Will I find those discussions on PubMed or can you point me in the right direction? I'll go check to see if any of that info is already posted here. This place is a treasure trove of meaningful information!

[Rustsmith]

Sorry, but I don't remember the key words to use to find the publications. There were only one or two, but that may be buried in our Research papers folder. It was several years back. As I remember, the publication spoke about how change occurred to the brain's structure due to dopamanergic augmentation.

[buglegs]

Well its day 9 of my requip reduction phase and I'm feeling good about the process. It seems my RLS symptoms are decreasing in intensity as time goes by. I've been taking the 1000 mG B-12, Gabapentin 300 mg in the morning, 300 mg at noon and 900 at night along with 2-mg requip, I've been really tired in the evenings and RLS seems to becoming less and less intense, like its reverting back to lower intensity levels before starting dopamine antagonist years ago. I believe when I finally take my last requip and get this deadly medicine out of my system,I'll be a lot better off fighting the RLS. Just to recap..December 28 I dropped from 12-MG requip to 4-MG daily, thought I was gonna die. I'm currently on 2-MG requip and 1500 MG Gabapentin which seems to be working better and better as the days go by. I'm hoping to reach my goal of 0 requip in 7-more weeks and then hopefully reduce the MG on the gabapentin, we will see. I have been sleeping better at night also, last night I went to bed at 9:00 PM and slept through the night getting up this morning at 5;30 AM..feel rested, no RLS at the moment, legs / muscles are a little sore feeling, but overall I feel better everyday. Hope everyone is managing to stay sane because this RLS is or can be a nightmare at times..

[Polar Bear]

Well done. I hope you will be discussing a treatment plan going forward following your reductions.