Untreated I used to have a complete spasm of both legs and basically entire body every 13seconds you could set a clock by it.
Mirapex was a miracle drug or so I thought. However It has caused me Alzheimers symptoms and terrible eating addictions among other problems.
Miripex is a terrible drug. I would personally avoid it like the plague. I had RLS my entire life but only got treatment in my 30's.
The Miripex distorted my thoughts to a frightening level and I augmented on it - my entire body was spasming uncontrollably. It can severely distort a person and causes many issues.
Be very, VERY careful and withdraw slowly moving onto an opiate drug if possible. Avoid any other dopamine agonists for a year or so too.
What are you taking at the minute and what part of the world are you in?
I weaned off of Mirapex for 3 weeks replaced with Gabepentin. However my RLS came back so strong I could not take it anymore and started back on a much smaller dosage of Mirapex. I was taking 4.5mg a day of Mirapex. My family Dr. didnt know that for RLS 0.5mg is the max dosage. I started having a ton of nuero side effects and thought I had either parkinsons or Alzheimers. A nuerologist figured out it was the Mirapex and he switched me to Gabepentin. It did nothing to help my RLS. After being fully prepared to shoot myself one night I decided to start back on it at approx .35mg dosage. It did stop the RLS and with less side effects at first. 6 months later IM back to .75mg and the basically as bad as before. I know I should go back to the Nuerologist but there doesnt seem to be a good drug other than the dopamine agonist to treat this. I plan to go off for another 3 weeks and get a small reset and continue with a smaller dosage for awhile. I live in Texas.
Marky1017, read the post by @hm523 on my thread about buprenorphine- I’m not sure how to link things or if you can but he’s in Dallas and has had great luck with Neurology Consultants of Dallas.
Hi Marky, I believe this is the thread that erinjee is referring to. hm523 has posted on this thread. healthunlocked.com/rlsuk/po...
Have you tried any opiates? I find they are far superior as a treatment for RLS without the brain melting side-effects of the dopamine agonists.
Damn but that was way too high a dose and way to short a discontinuation. As Manerva has mentioned you could be at risk of withdrawal syndrome so go slowly and carefully off the Mirapex while increasing an opiate - codeine, Tramadol or oxycodone have all been used successfully by people.
If it is safe to do so, you may find relief from cannabis - it has been a good drug for me, but be aware of the legal ramifications if illegal in your area.
Kratom is fantastic, there are little negative effect and its legal in your state:
kratomkrush.com/is-kratom-l...
some good information on this thread:
healthunlocked.com/rlsuk/po...
I have always been afraid of opiods and becoming addicted. I actually tapered off over 2 weeks and went 3 weeks without anything but Gabepentin before starting back again. Upon reading about DAWS just today I suspect I was having a bad case of it. That and the horrible RLS I experienced for 3 straight weeks was to much to bear. I probably need an experienced professional to help me get off Mirapex this time. The Nuero Dr who took me off of Mirapex after 13yrs on it was going to have me do it in 1 week. My gut told me to use 2 weeks but that was probably not nearly enough. I need to find someone who really understands the difficulty in getting off of Mirapex and how to treat RLS. Anyone heard of a good Dr in the West Tx area.
It just depends what dose of mirapex you're on. It took me 10 months to wean off it. 2 weeks or even 2 months is not long enough by far.
Full blown DAWS is failry uncommon and usually only people who have developed an Impulse Control Disorder because of mirapex are likely to get it.
DAWS is characterised by possibly severe mental health problems, anxiety, depression and suicidal ideas.
More usually withdrawal effects are an intensification of symptoms and sleeplessness.
Regarding opiodes I am deathly afraid of starting them and becoming addicted. Is this a valid fear?
While unfortunately there are those that started on the road to opiate abuse after legitimately taking them for pain, undoubtedly there are ways to minimise any issues.
Has the pain a definite source? Far too many were given opiates for pains that had no recognisable cause and could well have been psychosomatic pains caused by illnesses such as depression, (remember stress can cause your stomach to burn a hole in it!!).
Is there a history of substance misuse? If a person has misused alcohol for example then caution is needed as those addictive behaviours can be triggered with opiates.
Are the drugs taken as prescribed? If you take them as prescribed then addiction is unlikely. If you are taking extra to get a little buzz or kill pain then problems are lying ahead.
You mitigate the last issue by working with one Dr and taking the drugs as prescribed.
Off and on I have been taking opiates for the last 18+ years. By all hysteria I should be an addict buying heroin on the street. When they become less effective I stop and change the drugs to non opiates with only an increase in pain and discomfort - no psychological cravings, no desire to 'have one more.' I want any drug that will stop the RLS, pain and M.E. I experience. If they are opiates fine, if not well that's fine too - I don't care what the drug is as long as I have maximum relief for minimal side-effects.
Why is it OK to be dependant on insulin or antidepressants and not opiates? Many people are dependant on some drug or another to control some illness or another. We don't worry about those dependant on anti-hypertensives to keep them well so why worry if it is an opiate?
We need to move past the shame of Big Pharma and Little Drs who through out strong painkillers with little to no care and even less safe guards - If proper protocols and education is carried out then there are unlikely to be any issues.
No. Read the opioid study being carried out by Dr Winkleman at Massachusetts General. Low dose opioids are safe and effective for RLS as long as no history of abuse.
Believe me, dopamine agonists are far more dangerous than low dose opioids.
You have to get off Mirapex. You need to reduce very, very slowly. It’s hell on earth and opioids are essential to reduce the terrible withdrawal symptoms.
As you’re in Texas you can see Dr William Ondo and he’ll probably prescribe Buprenorphine which will help you reduce/get off Mirapex and will work long term to relieve your RLS.
Hi I am struggling with body spasms right now, just wondered if you have managed to control yours ?
Sorry to hear what mirapex has caused you.
It seems you need to wean off it.
If so then you first need to consider an alternative.
Since you have developed an Impulse Control Disorder (ICD) - the eating, you are at risk of developing DAWS ( Dopamine Agonist Withdrawal Syndrome) when weaning off it. It needs to be done very slowly and may cause you some mental health issues, anxiety and depression. You must watch out for this.
Marky, I suspect you are suffering from withdrawal from the mirapex and from reducing it too quickly. Coming off in 1 week is negligence. Experts now says to take at least 3 months; bit that still depends on the dose you're coming from. As Manerva and raffs have said, reduce again, but very slowly. I don't know the strength of your current tablets, but at long as they are not of the slow release or prolonged release kind, you can safely cut them. In halves or even quarters. Wait for the increased RLS as a result of each reduction to settle somewhat before you reduce again. The slower the better if you want to reduce the withdrawal agony. Especially the last bits are usually the most difficult and you meed time off work and/or a strong painkiller of enormous mental strength and support to get through that final bit. And then it will most likely still take a while before all withdrawal symptoms disappear. It is very much worth persisting, though. As afterwards you will geel much better. You'll get an idea if you read the many many posts and replies here on HU about augmentation and withdrawal from ropinirole/Requip or pramipexole/Mirapex/Sifrol.
Switching to gabapentin is indeed the thing to do first. However, it will be difficult if not impossible to assess its effectiveness for the RLS while you're still reducing and withdrawing from the pramipexole. Before that is fully over, the general idea is not to go beyond 900mg of gabapentin, all or mostly taken in te evening.
Meanwhile, do get your blood iron levels tested and make sure it included ferritin, perc saturation and haemoglobin. Especially ferritin for people with RLS needs to be not just 'normal, but high in the normal range and at least higher than 100ng/l, but >200 or >300 may even be better. If your iron is low, start taking iron bisglycinate aka gentle iron every other day. That is a slow but a kind to your intestines way to increase iron.
Read to get yourself informed, and never hesitate to ask more questions or simply to moan or rant. Good luck.
You’re suffering augmentation. I went through it on Ropinirole and had whole body spasms every 10 seconds.
The only solution is to get off mirapex.
Just for info,when I suffer my rls in bed,I also timed 13 secs between each spasm.When I couldn't get to sleep I used to try and count to 12 then move my legs before the attack as I thought this would be better than the rls attack.
Try clonazapam 0.5mg.if t's on the NHS otherwise private Is also a sleeping pill .Do check out with pharmacist first Take care
I was the same, full body spasms throughout the night until starting mirapex. Frightening to hear about your side effects from it. Difficult to know what to do for the best as I've tried pretty much everything else. I'm relieved to have found something that works (apart from mild symptoms) but worrying to think what damage it's doing.
I just read your post; did you find some relief from both your RLS & leg spasms? It was mentioned you in live Dallas. We’re neighbors - I live in Denton County.
I live more in West Tx area. I went back on a smaller dose of pramipexole and that worked fine for now I will see a neurologist next month to see about going off the pramipexole for good this time.
Daughter with severe RLS
Does anyone else have poor sleep even with RLS symptoms under control?
Does anyone have RLS at 11am ?
Does anyone suffer from rls in their arms as well?
Does any one else suffer from RLS all over their body?
