RLS has now led to RAS

[Tobias10]

Thanksgiving week I experienced Restless Arm Syndrome for the first time. Actually, when my former neurologist took me off of Mirapex abruptly in June of this year I did have terrible spasms in my arms that led me to clenching my hands while my arms twisted and bent at the elbow but then once I got thru 3 weeks of withdrawal I did not experience any issues with my arms until now. I thought at first it was just a back ache because the sensation would start back in my shoulder blade but then traveled down one or both arms. It feels as if my wrist area is being pulled back during the spasms (which I feel are mild now and am praying don't progress). I was in the car traveling and had to lay in the back seat while my husband drove because the spasms were in both arms and one leg. I had them off and on for two days and then had a two day break until I started with them last night right after I went to bed. Is anyone experiencing this?

My new neurologist has taken me off of the Tramadol and Ambien and put me on Sinemet (which I started with 20 years ago briefly). I now take a Sinemet at dinner time and then near bedtime I take a second one along with 1 Mirapex and 2 Gabapentin. Some night I get 3-4 hours of solid sleep and then am up and down the rest of the night. Tonight is not one of them so I'm up getting a cookie recipe assembled for baking in the morning.

[Jules1953]

Years ago I was on Sinemet and I had to wean off it because I was experiencing augmentation. It wasn't helping with my RLS any more and infact was making my condition worse.

[Jules1953]

Mirapex is Pramipexole a dopamine agonist medication and cannot be stopped immediately. Mirapex needs to be reduced slowly. Sounds like you are experiencing augmentation.

[Tobias10 in reply to Jules1953]

I stopped the Mirapex back in June and did go thru withdrawal despite telling the neurologist over and over that it was not recommended to just stop the drug - hence, she is no longer my neurologist. I just started the Sinemet a week ago and I know if I start increasing the drug down the road that I will be in the same boat as I was with the Mirapex. I am hoping that something else comes along to avoid that occurring.

[Joolsg in reply to Tobias10]

Sinemet is another dopamine agonist and you need to find yet another neurologist as this one is as bad as the last.You’re suffering augmentation.

As you’re in the USA, let us know where you’re based & we can point you to an RLS specialist centre or someone who knows the basics.

You shouldn’t be on 2 dopamine agonists & you need to get off both very slowly and onto pregabalin or a low dose opioid.

Consider joining the US RLS foundation at rls.org - it’s $35 a year & you get access to webinars by experts & newsletters & local US support groups.

Augmentation is the most common complaint on ALL RLS websites.

[Hidden in reply to Tobias10]

Sorry to contradict Jools.

Apologies Jools!!!!

Sinemet is not a dopamine agonist. It is a combinaion of levodopa (L dopa) and carbidopa.

L dopa works by raising dopamine levels, whereas a dopamine agonist stimulates dopamine receptor sites.

L dopa was discontinued for RLS and is mainly now confined to Parkinson's Disease which is due to a lack of dopamine, whereas RLS isn't.

They're different.

However, it's correct that L dopa causes augmentation. In fact it is much more likely to cause it than Mirapex. In addition, Mirapex carries the highest risk of all dopamine agonists for augmentation.

I imagine then that this combination will almost certaily cause augmentation and possibly very quickly.

Jools solution for this is spot on.

[Joolsg in reply to Hidden]

You’re correct Manerva. I keep forgetting Sinemet is an older type of Parkinson’s med.

[Hidden in reply to Joolsg]

No problem 😀

[Crex]

I experience RLS in my arms and legs and sometimes my whole body feels affected. I also get burning feet and hands, face and groin on occasions and strange water dropping feelings all over. I take pregabolin at the moment and cocodamol to get to sleep. Works for me at the moment anyway.... Do hope you find a solution.

[Boxer215]

Hi, I’ sorry to hear that. I had restless arms & lesser degree legs last night, I can sense the electric pulses coming from my brain & sometimes shooting through my heart which I find a bit scary, do you get those symptoms please?

[Tobias10 in reply to Boxer215]

I notice my sensations start around my shoulder blades - either one or both. if feels as if the area around my should blade seizes and then the sensation shoots down my arm to my wrist area and my hand wants to clench as if the muscle in my wrist wants to pull my fingers back in towards the palm of my hand. Last night my right arm was going solo and I felt like every time my arm would start to seize my right leg would jerk as if trying to stop the sensation. I actually fell asleep and got about 3.5 hours of good sleep and then the cat kept waking me up touching my face but then he did not jump down trying to get me to give him treats. I then noticed an odd chemical smell in the house. My husband had just used the snow blower for the first time this season yesterday and he found the fuel line hose was leaking in the garage below our bedroom and had filled the house with the smell - so for once I appreciated the cat waking me up. When I tried to go back to sleep my right arm felt very achy from top to bottom so that was the last sleep I got all night.

[Abookwriter2]

Jools and Manerva are spot on. It seems the merry go round of drugs with neurologists will continue until you either find a competent one or can get an opioid like methadone to get off the darn dopamine agonists and augmentation cycle of pain. Why they are so dead set against opioid remedies that work I don’t know. I just saw De. Buchfuhrer after almost cancelling ($380 not covered) but he set me straight and my augmentation ceased overnight.

The new medication my neurologist had prescribed? Horizant, a gabapentin like drug which I specifically had said I could not take due to side effects!

Dr. Buchfuhrer does telemed appointments but I believe has to see you to prescribe. I’m lucky I live near his office. Maybe your new neurologist would teleconference with Buchfuhrer if suggested upfront since he is an RLS specialist?

I wish you success in finding a good doctor.

[Stdorn in reply to Abookwriter2]

I dont get it either we have known about opiates efectiveness for RLS since 1685 yet it seems to be the last drug choice. I had a neurologist (testing for nuropothy not my RLS DR.) That was confused as to why I was on tramadol for RLS (yet its the only drug on its own that ever helped) currently on tramadol, and gabapentin.

[Abookwriter2 in reply to Stdorn]

Tramadol worked for me but only in conjunction with Ropinole (sp?). Dr Buchfuhrer said writing was on the wall and maybe weeks maybe a couple months for more augmentation. He’s comfortable with the opioids as that is what has been working forever. The rest of the Neurologist community won’t bone up on RLS and are afraid to prescribe anything like methadone. My older brother, a self diagnosed, many ailment psychologist, exclaimed that ‘Ropinole is the date rape drug and methadone is for addicts!” Shaking my head but not advertising what I am taking. Thank goodness for this forum or I’d never known about Dr. Buchfuhrer!

[Tobias10 in reply to Abookwriter2]

I have been thru more than 10 neurologists in the UPMC UPP Neurology group over the past 16 years and have just recently gone onto Medicare so I have switched to a new neurologist outside of UPMC and I have lodged a complaint to the health plan regarding their neurologists who list on their webpage that they specialize in RLS but truly do not. I have been misdiagnosed and over medicated among other things and the final straw was taking me off of Mirapex cold and the excruciating pain I went thru for 17 days thru withdrawal. I truly believe she was negligent in my care. She pushed Methadone and put me onto Horizant which was very expensive and did nothing more than the Gabapentin did so I went back to Gabapentin. The new neurologist is so much more knowledgeable and attentive to my inquiries, etc. Hoping this is the start of a long relationship.

[Abookwriter2 in reply to Tobias10]

That's amazing to have someone prescribe exactly what did work for me (methadone) that's a neurologist/RLS expert when I had the typical neurologist reluctant to even continue the tramadol. He did prescribe Horizant thought which turns out to be an expensive time-release version of gabapentin after I'd told him gabapentin was not an option .

So going off the ropinole and tramadol cold turkey and on to the methadone has so far worked for me and I believe stopped the augmentation ropinole was causing. No wonder it felt better as augmentation is hell. The arms and whole body creep stopped right away.

I don't think we are all meant to be on these Parkinson's meds completely, tritating up and permanently, switching from one to the other. It is scary to try cold turkey but I had enough confidence in Dr. Buchfuhrer to jump off the cliff.

Not only almost rls free but what a write off at $380 initial consult!

🥴

[bill54321]

What an experience you have. I only have jerks in my legs. I find they come when my brain recognizes drowsiness. The brain thinks it is me going to sleep. So, I tell other to talk to their Docs about taking meds (Yours) at noon, 5;00 PM and at sleep time. Most older people like me doze after meals. This is an invitation to jerk unless you head it off with your meds. Doesn't this make sense.? Show this to your doc. Does he have any other proof besides a mis-directed fatique study.?: The answer, is you are unique. Study the brain barrier on google Who knows that Stanford University has discovered over 20 new protein affecting THEIR altzheimer study that could help with movements disorders of ataxia, parkinsons, restless leg and myoclonic disorder? Research in day time jerks has pasted us by. Sleep organiztions still call us a thinking about movement at nite disorder. Dumb,Dumb, Dumb. Research your own and get 1-2-3-4 or more opinions. No one really knows what our problem is. So, you and I and others must be pro-active to force more research into our problem...I am a knowledgeable 90 yr old retired Pysical Therapist. I am not a Cuke>>I have had all the brain scans, magnesium brain over load, blood work up for associate causes, etc.

[arwyn]

I have been taking Gabapentin for some three years after being prescribed various other medication. My symptoms were sever for any years ( some 25 years ) and would kick in during the evening. I spent many an evening lying on the floor desperately trying to relax. I happened to read something about Gapapentin being helpful for RLS. I have taken 2 x 300 mg each evening and it has worked for me. on occasions I have woken in the morning with RLS and have taken further 300 mg to stop my legs twitching. My sleep pattern is good but I do take 10mg temazapam when I go to bed. I hope this helps .