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.
This is quite a pessimistic view If we understood the root cause, then we might be able to at least get some improvement.
The problem really is that we can't measure RLS objectively. We really need something, may it be a SPECT scan of the brain or whatever, that allows us to objectively assess changes after some intervention and do animal experiments. (Rats don't do so well with questionnaires.) Without that, it's very hard to understand the pathomechanisms (there might be a lot different ones, potentially) and decide therapies on a per-patient basis.
Well I'm currently taking 75-MG Lyrica/1000-MG B-12 in the mornings and 150-MG Lyrica / 1-MG Requip in the evening, usually around 6:30 - 7:00 PM, takes approx. 1.5 - 2.0 hours before I can actually close my eyes, let my brain neutralize to that path of sleep, without the RLS starting preventing dozing-off. The hours I've been sleeping has been averaging 3-4 hours, sometimes 6- hours on a good night. Since drastically decreasing my Requip which started out at 12-MG and now 1-MG, all my RLS symptoms are now mostly below the knees. I've also been experiencing some really weird sensations as I've been decreasing the Requip, the muscles in my calves have been really tight as if I've been running or doing calf exercises, hurting, burning and pulling. Also the muscles in my arms will get really tight at times, almost swollen looking as if I've been lifting weights. Yesterday my arms did this couple different times lasting about 30-minutes each time, now my legs, the weird sensations have been constant. In a couple of days I'm going to drop the Requip to 0.5 for 7-days and then I'm going to 0 Requip and throwing the rest that I have left in the trash. I'll continue taking the Lyrica and B-12 as prescribed, hopefully the Lyrica will be enough for me to get past the symptoms to be able to fall asleep. I'm sure I'm gonna have a rough few days but I'm planning on not taking any Dopamine Agonist ever again because I feel like this is a very dangerous drug that interrupts the natural dopamine activity of my brain greatly contributing to my RLS, especially since being overdosed for about 8-9 months. I'll keep everyone posted on what happens...thanks...
Tonight will be the 3rd night of me reducing my Requip to 0.5 MG...not much sleep past 2-nights since dropping to 0.5MG..the RLS has been constant / sporadically throughout the night, been getting about 3-hours of segmented sleep, hopefully it will level back out in a few days. Hope everyone have been having some RLS free time..have a blessed Easter Sunday!!
Tonight will be the 3rd night of me reducing my Requip to 0.5 MG...not much sleep past 2-nights since dropping to 0.5MG..the RLS has been constant / sporadically throughout the night, been getting about 3-hours of segmented sleep,
Good luck! I had 2-3 really rough weeks after coming off pramipexol, so it may take a few days more I'm afraid.
Well I'm on day 8 of taking 0.5 MG of Requip but something really interesting has happened in the past few days..a few days ago I agreed to a spine stimulator trial with the new Eterna SCS system from Abbott. The first night of having the stimulator I took my normal medications, 150 MG Lyrica, 0.5 MG Requip, my RLS started out worse than usual but eventually settled down, I immediately thought this trial stimulator has to be removed ASAP. On day (2) my RLS was barely noticeable, none of the thigh numbness/burning, leg pains, muscles burning/pulling it was really weird almost like my RLS was gone. The past 10-15 years I have not been able to go to sleep without taking Requip well yesterday was the first time in years that I was able to actually take a nap during the day without taking any Requip. Normally if I was to sit down or lay down during the day and try to doze-off that creepy crawly, electrical tingling, bug crawling feeling would start immediately unless I took Requip but with the stimulator I didn't have any of those sensations. Hopefully it continues providing me with RLS relief because I'm really over all the medicines...2 more days and I'm stopping the Requip all together and hopefully the Lyrica will follow...I'll continue to post my condition(s)...Have a great day!!
Well looks like I won't be getting scheduled for my spine stimulator until Mid-june..but I'll be completely off Dopamine Agonist at that point. I decided to start my 12-day drug holiday yesterday, no medications at all. Its 0539 here and I've been awake all night, crawled in bed a couple times for 10-15 minutes but had to get right back up, both my legs from the knees down to the ankles have constant intense pain that feels like it reaches down to the bone. Additionally, I'm having that creepy, crawly, electrical tingling feelings deep down in my legs and the muscles are swollen tight, burning and pulling as if I've been doing some kind of intense workout. I initially was going to continue taking my Lyrica while stopping the 0.5 Requip but decided to try and do the complete Drug Holiday."NO DRUGS" for 12-days and then see my neurologist for reassessment and a new treatment plan because I don't feel like the Lyrica is going to control my RLS by itself and I'm done with the dopamine agonist drugs. So, today is DAY 2 for me and I'm so tired already, I'm a strong willed person but I can tell you this going to be a real challenge because I've relied on dopamine agonist for over 25 years to alleviate my RLS. Well one day down only 11 more days to go...I'll keep everyone posted on my 12-day journey, wish me luck!!
I've been taking Pregablin (lyrica) for approx. 30-days and Gabapentin prior for 14-days...the Gabapentin made my feet swell really bad, so after 14-days they switched me to pregabalin...stopping after such short period shouldn't be that bad hopefully, I'm just ready to do this 12-day drug holiday and start over fresh IAW Dr. Early's theory..hopefully my hard drive reboots and the after RLS symptoms will be minimal making it easier to manage..thats my hope..
Well I'm on DAY 04 of 0.0 Requip..longest Ive been without taking any kinds of DA(s) in years...Its been a rough last (3) days and nights without taking any kinds of medications but I did get about 2.5 hours sleep this morning around daybreak, its been three of the worse days In my life, so tired, RLS constant symptoms just cycling on/off and my anxiety is through the roof, at time I feel like I'm suffocating, not a good feeling. I'm not taking anymore Dopamine Agonist if it kills me, so hopefully my symptoms subside after few more days..sleep / rest has to come one way or the other..
Congratulations for making it to Day 4 of no Requip. We have had other members of the board who grew weak at this point and took a pill just to get some relief. Glad to hear that your will is still standing strong.
If you follow the normal progression, the fact that you were able to get some sleep around daybreak means that you should SLOWLY begin to recover from here.
I wish you luck on that matter and hope that you return to your baseline level of RLS very quickly.
Have you discussed with your doctor what you will do once you do return to you baseline. It will be better than what you have just been through, but it will not be zero RLS, so you will need some form of non-dopamine treatment.
Steve
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
If we understood the root cause, then we might be able to at least get some improvement.