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Doctors should think before they prescribe meds for rls patients. If someone is coming off mirapax, the dr.
should check what they have coming up in the next few months. What if one of their children is getting married. You can't have withdrawal and a childs wedding. The dr. should inform the patient exactly what to expect when going off mirapax or a medication like that. Patients are not always aware of what to expect. The dr. can never explain it right. They need to live it!!!
I think the problem is that most drs don’t actually realise what we go through. They don’t get any training on RLS in many or even most places around the world.
I should make a video of what I'm going through. It would be an eye opener!!!
just checking in to see how you are doing? I found it helped a little when I didn’t feel so terribly alone in the middle of the night!
Thank you. For two nights I decided to try one mirapex to see if it would help. It did help. The rls went away and I did not have to pace the floors all night. It was a miracle. I know I went off mirapex. But you probably know what I mean. Pacing the floor all night is crazy, My husband wanted to take me to the emergency room. I said no. the second night on horizant, while pacing, I fell. I don't know what happened. I found myself on the floor. I think I fell asleep while walking and walked into the floor fan. I was not hurt, but it could have been worse. My dr is on vacation but I put a call into her intern to get me buprenorphine. I don't know if I can be nice because I am so angry they let this happen to me. I will keep bothering them until they fix this. I understand the horizant doesn't kick in until 5 days. Tomorrow is day 5. I want a miracle!!
Most doctors and specialists simply don't know.
When I was being treated for a stroke, cancer and a hernia the treatment put my RLS through the roof. They simply didn't understand that what they thought of as a trivial, inconsequential condition was making me feel far, far worse than the 'serious' conditions that they were treating me for. The worst time of my life - because of the RLS and some other side effects.
Some of those treatments and the resultant effects were necessary, unavoidable, and had to be put up with for the 9 months that the treatment continued. Some of them could be changed to minimise the RLS.
Ultimately the 'serious' conditions were dealt with and the RLS symptoms declined to less than they were prior to treatment (largely because I worked out what was triggering RLS): I'm grateful that I'm still alive, and also that I'm now virtually RLS free without medication.
How did you do this?
I was doubly lucky: firstly I had never taken pramipexole (or any other dopamine agonist) or had low ferritin; secondly I discovered magnesium and found my particular fairly simple dietary and medicinal triggers and cut them out. Details, such as they are, are in the Bio in my Profile.
Unfortunately, the fact that you have apparently augmented on pramipexole and couldn't get on with gabapentin could mean that you will need a low dose opioid.
healthunlocked.com/rlsuk/po...
Hi Chris, just a quick question re magnesium. I'm experimenting with 1x magnesium bisglycinate 500mg an hour or so before bed. So far I'm not sure whether it has much of an effect or not. I have previously tried mg creams, and taking mg in the morning (I have RLS throughout the day as well as evening and night). I don't take any other medicines. I think I read that you take magnesium citrate. Is there any reason that you don't take bisglycinate? Can you tell me what strength mg you take?
Magnesium works for some, but not for others - including not helping my brother.
I took magnesium citrate initially because it was more widely available than (bis)glycinate in UK high street shops, and - while I have a sensitive bowel, particularly following radiotherapy - I've never found citrate problematic as long as I'm careful. 'Careful' means not taking more than 200 mg at a time: at peak I was taking 3 x 200 mg over the day, currently I'm taking 2 x 200 mg. 200 mg pills are large - some find them too large!
Many people - particularly in the US - report that they find glycinate very effective. I did try taking it for a month, but taking it at night as directed didn't find that it helped sleep for me (one of the claims made for it) and found that it was slightly less effective than citrate (for me) in that I had some cramps.
One thing that I did notice was that the brand of glycinate I found retail - Solgar, now owned by Nestlé - had been 'spiked' with magnesium oxide to raise the nominal elemental magnesium level while keeping the pill size smaller, which seems to be a major goal for them. My problem with this is that while oxide is high in elemental magnesium it has low bioavailability, and in my view adding oxide to glycinate is simply wrong. Solgar/Nestlé refused to reveal how much glycinate vs oxide was in the pills - citing commercial confidentiality - so I stopped experimenting with it.
Thanks for your reply. I agree that the tablets are very large (in both cases)! The bisglycinate I use is a French brand which doesn't include any oxide. I did find that the citrate had a mildly laxative effect for me, so switched to the other. I'll keep trying for another few weeks and see if there are any significant benefits.
The answer I received from my concern about the treatments on the RLS Foundation website
Going cold turkey on mirapax
I was Diagnosed with RLS yesterday, began Pramipexole but twitching has worsened.
Decreasing Methadone & Using Nidra
