POSSIBLE MIRACLE CURE FOR RLS?

[buglegs]

Well let me start by saying, I'm sure my story will be very familiar to most on here..I'm a retired "SENIOR CHIEF" USN (2006) Diagnosed with RLS/PLMD in 2001 while still on active duty. I was started on Sinemet which lasted about (1) week, really bad side effects, switched to Requip 0.25 mg daily, worked great for years with gradual increases of dosage, maxing out to 4 mg around 2015. The maximum recommended dosage I've been told is 4-MG daily for RLS and 4-MG for me was becoming in-effective. Over several years my dosage eventually increased up to 7 MG daily, after several years it was lowered back down to the 4 MG dosage level. The 4 MG wasn't working, by now my RLS seemed worse when taking the Requip but I couldn't go to sleep without taking it. There is no relaxing, sitting for very long, No Napping, as soon as my eyes close and I try to relax that creepy, crawly, electrical tingly feeling starts and I either have to move or loose my mind, its actual torture.
July 2023 Requip not working switched to Pramopexole 1 MG 2 XDAY, ( 1 MG Pramopexole = 6MG Requip), so essentially I went from 4 MG of Requip daily to 12 MG of Requip daily.
December 28 @ 0530 awoke exhibiting major symptoms of suffocation, claustrophobia, very high anxiety, panic attacks, difficulty breathing and lots of other prior common sides effects of dopamine antagonist leading up to these major dangerous effects, stopped NO Pramopexole since.
December 31 back on 4 MG Requip (some I had accumulated) this is the only thing that will stop the creepy crawly, electrical tingling feeling to try and go to sleep. The symptoms I'm experiencing now seem to match-up with "DAWS" and Dopamine Antagonist Augmentation all wrapped into one category..nightmare by means of torture. The only other thing I've found to reduce the symptoms is smoking marijuana and thats hard to regulate the dosage verses effects but if it stops the bugs for a couple hours I'm smoking.
Well to sum it all up..I'm on 4 MG Requip around 8:00 PM sleepy, able to shift brain to neutral without creepy crawly feeling allowing 3-4 hours fragmented sleep each day, kind-a seems like the movie group hog day. The marijuana helps but I'm sure wishing it came in pill form so I wouldn't have to smoke it, at least until I can figure something out. During all my sleepless nights my web surfing has found an individual located in Fort Collins, Colorado that claims they can Reverse Restless Leg Syndrome, Goggle the book entitled " A Perfect Nights Sleep" by Dr. James Anderson, please let me know what your thoughts are because I'm wondering could the answer be all that simple?

[Rustsmith]

Nerve decompression surgery and other surgical techniques such as vein stripping have all been touted to treat RLS and rarely do much other than pad the surgeon's pocket. You would be far better off seeing a movement disorder neurologist or visiting one of the RLS Foundation Quality Care Clinics.

[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 are near an RLS Quality Care Centre this could be a good option.