I'm posting this so that maybe it can save someone's life like it did mine. I've suffered with severe Rls since at least middle school and I'm now 50 yrs old. Mine was so bad that I would punch my legs and arms to make them hurt so bad, so I would feel pain instead of the rls. It started going up into arms in my 30s and I would have bruises on my arms and legs and someone reported my husband for abuse. That was cleared but I became very suicidal. I've been on every med that exists with nothing working. I've spent the majority of my life walking ip and down stairs, kicking my legs in the air and bawling my eyes out UNTIL a miracle pill called MIRAPEX! I would physically hurt someone if they tried to take this med away from me. If your suffering with rls to the point of wishing you could have your legs, arms cut off, call your doctor and ask for Mirapex. I'm be been on EVERYTHING, even opioids, which can have many side effects like addiction. I've been on benzos as well. Even if something did work at first, it won't take long for it to not work anymore or you can have the unwanted side effects. I've been on Mirapex for almost 6 years and only had to increase once after 5 yrs. This medicine saved my life. I've spent 35 years walking, pacing, climbing stairs, dreading sundown, in all kinds of positions that would look seriously odd if someone were to look through my window at night, crying and begging God to stop the misery, punching myself so the pain would overtake the rls. As well as taking overdoses of medications hoping I wouldn't wake up so I never had to suffer again. My entire 30s and 40s were horrible with increasing symptoms until full body rls daytime and nighttime took over my life to where o couldn't work anymore. I couldn't go to church anymore because my had to get up and walk before the service even started. If this is you, don't listen to anyone, go talk to your doctor immediately. I hope this can change someone's life that has been overtaken by this horrific disease!❤️
chronic severe RLS: I'm posting this so... - Restless Legs Syn...
chronic severe RLS
We are aware of Mirapex/Pramipexole.It was miraculous for nearly everyone who tried it. Until augmentation hit.
I hope it continues to help you. If it loses effectiveness, do NOT increase the dose. Read all you can about Augmentation so you will recognise it. Ensure your serum ferritin is above 100, preferably 200. Iron infusions dramatically improve the majority of cases.
sleepreviewmag.com/sleep-di...
Oh I already had augmentation when o started Mirapex! From my toes to my neck. I would crawl out of my skin and I'm sure I looked psychotic. Thank God it has stopped. I do get breakthrough rls every few mths but it only lasts a couple of days. I think it's a hormone issue, or lack of hormones. It is bearable when I know that it will go away. Both of my daughters have it like I did at their age. But they can kick their legs in the air like bicycle legs, and get it to stop. I started doing that in grade school. This disease has ruined so many things for me and caused me so much grief, that I would have taken about anything, even if illegal. I started taking shots of alcohol when my augmentation started in my 30s. That led to me drinking too much and I was starting to have an issue. So I'm very VERY thankful for this medication. I would give up my heart meds and other necessary meds to keep RLS away!!
Were you on Ropinirole before mirapax?
Yes I sure was. That medication made me feel very strange and I had the overwhelming urge to keep my legs straight out and stiff as a board.
Kygigi3, you experienced augmentation on Ropinirole, then on mirapex, you increased the dose. You will experience it again. Doctors should never prescribe another DA once your D1 dopamine receptors have been over stimulated by Ropinirole. They should have advised a slow taper off Ropinirole.These drugs are mind altering and permanently damage dopamine receptors.
All we can do is warn you of how dangerous they are and suggest you get off them slowly.
That's what we all did.
It's extremely difficult.
No other drugs will work while you are on these drugs.
Whether you follow the advice is up to you.
Many of us succeeded in getting off these drugs and many of us now have zero RLS, night or day.
Dr Buchfuhrer, an RLS expert in California says 97% of us can be RLS free with the right treatment. But mirapex is not the right treatment.
You're in the USA. Most of the top experts are there. If you can, make an appointment to see one.
Dr Buchfuhrer, Dr Andy Berkowski, Dr Chris Earley, Dr Winkelman, Dr Ondo, Dr Silber.
I hope you can see an expert.
What does this mean 'These drugs are mind altering and permanently damage dopamine receptors'. In what way, and what is the evidence?
These drugs affect dopamine receptors throughout the brain. The D1 receptors become hyper stimulated because they don't get their share of dopamine.The brain becomes used to having 'extra' dopamine 'imitated' . Dopamine is known for causing pleasure. This drives Impulse Control Disorder and it's why we see so many addicted to shopping, gambling, overeating, etc.
We have members on here who have lost homes and families due to gambling addictions.
Dr Berkowski and Dr Buchfuhrer also express concern on their websites at the number experiencing DAWS. Dopamine agonist withdrawal syndrome. It can be so bad that people have to go back on dopamine agonists after going through withdrawal to stop the increased RLS. Dr Berkowski has one patient who came off dopaminergic drugs and had permanent anhedonia. He committed suicide. There are hundreds of scholarly articles on DAWS and ICD, but I've just attached a few.
The top US experts believe that damage to the dopamine receptors is why so many RLS patients do not respond to Alpha2Delta ligands like pregabalin and gabapentin after severe augmentation on Ropinirole or Pramipexole. It could also be why 40% do not respond to iron infusions. Iron is essential to neurotransmitter synthesis, but it dopamine receptors are damaged, iron absorption may be affected.
Any drug that affects dopamine in the brain will have side effects. As you can see from the articles, dopamine agonists are 'mind altering' and create ICD while on them and DAWS when they're taken away. The permanent damage is a theory proposed by the top US experts to explain why so many of us do not respond to Alpha2Delta ligands and iron infusions. It also explains anhedonia.
ncbi.nlm.nih.gov/pmc/articl...
ncbi.nlm.nih.gov/pmc/articl...
ncbi.nlm.nih.gov/books/NBK5...
I am glad it helps you but anybody that reads this who is not already on it, DO NOT START IT, unless there is some special reason to do so as up to 70% of people will eventually suffer augmentation according to the Mayo Clinic Updated Algorithm on RLS which believe me you don't want because it can be hell to come off it and the longer you are on it, the harder it will be to come off it and the more likely your dopamine receptors will be damaged so that the now first line treatment for RLS gabapentin or pregabalin won't work. Check out the Mayo Clinic Updated Algorithm on RLS which discusses augmentation and the latest guidelines on RLS treatment.Https://mayoclinicproceedings.org/a...
It has stopped my augmentation. Of course we all have different make ups so some things that work for one may not work for another. But for me, I would hurt someone if they tried to take it away. RLS has effected my mental health to the point where I think I have some ptsd from it. I will say this. It's important for me to mention my experience with gabapentin and rls. I know a lot of people take that. It worked wonders, until it didn't. I now have such a messed up neurological system from taking it for so long. Once it stopped working, I stopped taking it. Wasn't aware that your body gets used to it. I was so sick that I couldn't lift my head or move my body for 9 days. On 10th day I went to ER. They told me that was gabapentin withdrawals. I e never experienced anything like that. They gave me one gabapentin and one hr later I was 💯 back to normal. I now have so much damage to my neurological system and neurologists, 3 different ones, that it was from gabapentin and it took 2 years to wean off completely!
That was because you stopped cold turnkey. If you had weaned off slowly you wouldn't have had any withdrawal symptoms. I'm not saying this for you but for anyone else who might read it and therefore be afraid of gabapentin.
I’m glad it is working for you and hope that it continues to work for you. As Joolsg mentioned Do Not increase your dose. I personally would never recommend trying this for anyone. For me, it was fabulous the first 8 or 9 years. Dopamine agonists damaged my receptors and consequently I have not been the same person. Good luck to you
I've liked your post as I'm glad your life is bearable now. I've never taken meds in my life for RLS but have managed it with non prescription remedies...music, Therapulse, magnesium butter, copper bracelets etc but am not cured...I wish you health and happiness.
Please listen to the advice you've been given about Mirapex.You can contact Dr.Buchfuhrer by email for free advice. Huge good luck.
Hi- see my similar post to kathandkell earlier. My experience is very much like yours (I left out some of the details that you describe). For me, it was Sue’s advice, the Mayo algorithm and a doctor prepared to educate herself. Then prescribe Gabapentin- different treatments work for our different RLS sufferers. It’s taken 15 years and more for me to find my one - it’s not perfect but it’s 80 percent better than where I was- I’ll take that!!! Never lose hope.
hi kygigi 3 i was in your situation and i was prescribed pramipexole best nights sleep of my life. and now after 12 years 2 fighting to withdraw from this terrible drug i am back to, howling tossing pacing walking rolling my whole body is throwing me around but i will stop this awful drug you are very young to be on it i am 80 and cant remember when i went to bed with hubby thinking i would sleep well ..i take pregabalin now and only taking sifrol every other nite i wish you well and luck xxx
That is what the doctor gave as many years ago. Now ib only have to use it 2 times a week .
Try to manage with as low dose Pramipexole as possible, use Gabapentin with it if agumentation, is has to be increased slowly. I'm currently switching from Prami to Gaba because of horrible Prami side effects, and neurologist says these can be used side by side, whenever I need to take Pramipexole it's ok.
I've been there believe me and these good people on here helped me to which ill always be THANKFUL and pregabalin and codeine phosphate helped me and one BIG lesson ive learnt from these great people is the rule that what works for one might not work for another GLAD you have found relief and hope you have many many more years relief of this horrible condition
You are fortunate that Mirapex has not augmented for you. It augmented on my husband after only two or three years using it. This drug should be outlawed. When he was augmenting - and we didn't know that's what it was - he would instantaneously fall asleep when driving. No warning. Then, we learned about augmentation on this forum. Withdrawing from Mirapex was something I wouldn't wish on anyone. It was horrendous. I often wonder how many accidents have been caused by folks using Mirapex.
All the best to you and I hope that it continues to work for you. 😋
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