I am new here. Having had RLS since I was about 12 (1952-53), and it has become worse over the years, the pramipexole hydrochloride monohydrate, called Sifrol in Australia has been wonderful for the last ten years, however, it augmented and caused huge problems, although I did not realise what was happening. After I told my doctor, he tried a sleeping tablet, which did not work, four doctors later and four other drugs, I had fallen 15 times through lack of sleep for two months, and was in a mess, crying every night. I suggested I go back on Sifrol seeing I had been off it two months, and it has worked on a lower dose. I began to take CBD essential oil, but the Sifrol doesn't seem to work as well. Is there any connection? I have lots of 'hives' and they keep coming. One doctor said it is the Sifrol, but I have not had problems through the years with it, except when it augmented. A chemist said it is Spring problems. I am wondering if my body is trying to cleanse and the elimination is not working well enough. I would not wish RLS on my worst enemy.
Torture: I am new here. Having had RLS... - Restless Legs Syn...
Torture
I really feel for you. Augmentation is horrible. You came off Sifrol, went through horrendous withdrawal and then went back on it.
Sadly, augmentation will happen again quickly and I think that is what is happening to you. The Sifrol worked for a while at the lower dose but has now stopped working. I suspect your RLS will worsen again soon.
I don't understand why your doctor would put you back on Sifrol when you had augmented. I know you suggested it, but the doctor should have refused. He should have recommended another type of med like alpha 2 ligands ( Gabapentin or pregabalin) or an opioid like oxycontin.
I don't think the CBD oil is the culprit or spring fever and if I were you I'd get off the Sifrol again with the help of a strong painkiller and start on an opioid or pregabalin.
Jools
I've been on Mirapex for about 15 years. About a year ago it stopped helping so doc increased it. Now when I take it I go through hell for about an hour before it starts helping. That's new. Then he put me on the max dose of Gabapentin (Originally prescribed for trigeminal neuralgia). I haven't felt the Gabapentin is helping my legs. I also have restless body syndrome.
I have gotten relief from vaping cannabis or taking the CBD oil from cannabis (need the THC). But once I take it I'm out and sleep well. It inconvenient to go to bed so early.
I haven't noticed Kratom helping with RLS. Narcotics do help but the pain clinic costs too much for me.
Hi Jenny
Gabapentin won’t help RLS when you’re still on dopamine agonists.
It starts to work about 2/3 weeks after you’ve taken the last dose of Mirapex.
You’re showing signs of Augmentation- read everything on here you can and watch the video on Augmentation on the main page of the RLS UK website.
You’ll need to get off Mirapex very slowly with the help of tramadol or OxyContin.
You mention cost so clearly you’re not here in the UK. Can you find a doctor who will recommend narcotics for withdrawal from DAs?
Hi, Joolsg.
I'm in the U.S. My neurologist prescribed the meds the way I'm taking them. He has said nothing about going off Mirapex. I told him just yesterday about it and he insisted I stick with it but it has been a couple months already.
He does want me to go to the pain clinic for the trigeminal neuralgia and narcotics have been helpful in the past for RLS, but I have no insurance and our healthcare situation here in the states is an abomination. I can't afford going to the pain clinic, and that is how we get narcotics here. My doctors won't prescribe them. I'm pretty much screwed.
I can only suggest you find a new neurologist. You say you have restless body syndrome- Augmentation is when dopamine agonists stop working and then intensify the feelings of RLS. RLS starts earlier ( like for you- it’s worse than ever for the hour before you take your dose) and spreads to other body parts like the arms, hands, trunk, back and face.
There is no option but to get off Mirapex as it will just get worse.
If you cannot afford pain killers is cannabis legal in your state? Or Kratom?
You can certainly reduce Mirapex very slowly without pain killers- the withdrawal doesn’t kick in really badly until the last few doses.
You can also get your serum ferritin up above 100 as low ferritin is linked with more severe Augmentation and withdrawal. You can buy cheap patches from PatchMD in USA- they have offers all the time. Use patch and an oral ferrous bisglycinate every other night as that raises iron levels more quickly.
You can also ask Dr Buchfuhrer at the Southern California RLS clinic for advice. He answers emails quickly. He may recommend a good neurologist near you who will prescribe narcotics ( & maybe your insurance would then cover cost).
Youve said a lot of things that I've never heard of, despite educating myself for over 30 years. I have much reading to do!
I'm on the east coast so a dr in CA is not possible.
I don't have insurance at all.
My neurologist is considered the best in my area. I actually left the one I had to see this one. He sees 150 patients a day.
Cannabis in not legal in my state.
I have taken Kratom and keep it here. I haven't gotten relief from it for RLS. It doesn't do much for me except to help me sleep. I've tried numerous strains.
I have MS. I take Gabapentin for the demyelination disease I have, Trigeminal Neuralgia, which MS is known to cause. It is severely painful.
I take an OTC iron that is the only one I can tolerate.
Magnesium glycinate seems to help my legs a great deal.
Thanks for the info!
I too have MS and know exactly what you mean about trigeminal neuralgia - I’ve had that and occipital neuralgia.
Pregabalin ( Lyrica) helps with my MS pain.
Dr Buchfuhrer doesn’t charge anything so definitely email him. He is an absolute diamond as we say here.
You may find you notice an improvement in symptoms by reducing Mirapex dose. It is paradoxical but does happen.
I really hope you can get off Mirapex- I honestly am so grateful I got off Ropinirole.
Jools
Im sorry to hear another person with MS and face pain. Thank you so much for the info!
Ive been reducing the Mirapex. I'm supposed to be taking 2mg. Today I'm down to .5 and I feel better already. I don't know how long I should wait between doses if I'm having a lot of irritation so I wait an hour and only take .5 at a time.
I have a tremor and it is worse, but it is not nearly as miserable as RLS.
Well done for reducing the Mirapex- but do it very, very slowly and use your cannabis vape and cbd oil if your RLS plays up.
I really hope you start to get relief soon. I feel so very grateful to live in a country with free healthcare. I really hope you can manage to get the meds that will help your MS and RLS.
The Gabapentin will help the RLS once the Mirapex is out of your system.
Stay strong
Hi joolsg I am now using the iron bisglysinate in the patches and capsules (as recommended by you I think) I just wondered whether you take the capsule and apply the patch on the same night.
Hi Disnes
Yes I take the pills and the patch on the same night.
Dr Buchfuhrer’s email is
somno@verizon.net
He insists on correct spelling and grammar - he’s a stickler for that. However, he always replies.
A list of all the questions he’s been asked and his responses are on his website so it’s a good idea to read the latest- you may find someone has asked the same question.
Take care
Jools
Hi joolsg Just wondered how high you managed to raise your ferratin levels. Dr Buchfuhrer did reply and he said that it would be difficult for me to raise my level above what it is now because of a chemical called hepcidin whic keeps the level at around 60 (Mine is 66)
I agree but that’s why I take the ferrous bisglycinate every OTHER night. Apparently the hepcidin blocks the brain taking up iron but you can ‘fool’ it by taking every other night. My levels 2 years ago were around 60/65 but after a year rose to 140 then after 2 years up to 200. I know it takes a long time but I had no choice - my RLS neurologists don’t agree with iron infusions.
It’s worth a try if you cannot find a doctor willing to give iron infusions.
And I became vegan 6 months ago so have to get iron from vegetables ( spinach) etc.
Oh that’s really encouraging! Perhaps that’s something he doesn’t know!! How much improvement do you feel you have achieved? I have also changed my diet. I now eat very little meat and mainly vegetables and salads. I am trying to drink a Guinness occasionally as I’ve heard that iron in veg is not so easily absorbed as iron from meat
I have noticed a definite improvement in the last 6 months- I’m pretty sure it’s the increase in ferritin but as I became vegan at the same time it’s hard to know. I don’t want to eat animal products any more so don’t want to try experimenting to see what is really working. I still get RLS 3 nights a week but much milder and I can usually get back to sleep within 10/15 mins.
I really hope that you can raise levels and see some improvement.
Jools
+1 on Joolsg PLUS would like to point you towards proper cannabis - as Joolsg says CBD oil isn't likely to be a problem but unlikely to help much when things are very severe.
ALSO try looking up Kratom it has and does help many with RLS. A particularly attractive, well endowed and humorous member here started an interesting post on Kratom and has lots of info in it:
healthunlocked.com/rlsuk/po...
You'll need longer off Sifrol, imho, before trying another Dopamine drug and then I would look at the Neupro patch as it has less side-effects, give yourself a good 6 months away from the dopamine drugs before trying again. Again I'll go back to Joolsg post and recommend an opiate such as Oxycontin or Tramadol as they are imho the best type of drug for RLS.
Sleeping tablets and sedatives never work for me and leave me with RLS and too tired to get up and walk it off, I'd avoid them when possible.
Cold water on feet -very cold, hot showers and hot baths - very hot can help along with stretching, (try some yoga videos on youtube).
Look at getting your iron levels checked and search on here for Gentle Iron as many get good relief with it. I found a plant based diet, also avoiding caffeine, alcohol and artificial sweeteners helps.
Take care.
Hello welcome I can identify with you re sifrol it has really nearly destroyed my life- are you in Australia? I’m on Gold Coast- take care
Hi Jan. I am in Victoria. The Sifrol is working again, so long as I take it at the times chosen. I am taking CBD Extract as well, but it doesn't change anything. I am actually taking a lot of things to try and detox my body. Some suggestions are to get off the Sifrol, but I am so afraid to go back to what I went through. I have been on some of the drugs they suggested and I hate drugs. Medical cannabis seems to work for some people, but it is not legal here, although the Neurologist said it could be looked into. I don't know how, but intend to do some research as to how they make their decisions. Jan, if you are going through big trials with this horrible RLS, I sympathise with you. I am taking iron as my iron was on the lower side of normal. How I long to know the true answer for everyone, but it seems that it is not to be, at least in this life.
You can certainly get urticaria from almost any drug on the planet. I would see a dermatologist.
If the skin problems are from your drugs, the symptoms will be relieved within 24 to 48 hours after cessation. Then you'll know what caused it.
I would suggest gabapentin instead. I had to go off Ropinole and found gabapentin to be a godsend.
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