I did send them RLS info but as they’ve given me appointment with nurse not doctor im very anxious discussing it with someone who might know less than me.
How can I explain augmentation, I’m slowly decreasing Pramipexole by half tablet a day but will need replacement soon.
This link may help you to explain augmentation to someone who knows less than you about it. healthunlocked.com/rlsuk/po...
This is a good explanation of augmentation as published by the National Institute of Health and Care Excellence - which makes it official!
I have found that I often get a more in depth visit with a Nurse Practitioner than with the doctor. I would ask the nurse from the beginning how familiar she is with the disease and how many other patients she manages. I would ask her to explain what your options are to address the augmentation. If she is well versed on RLS she will understand what you are describing. I went off of Pramipexole due to augmentation in June 2020 cold turkey under the direction of a doctor (who I no longer see) and it was 17 days of pure hell and no sleep. She did start me in Sinemet and then after a month supplemented it with Pramipexole and so far that has semi-managed my symptoms. I had COVID in December 2020 and nearly died - I was hospitalized for 18 days, 11 of those in ICU - but my RLS seems to have lessened after I recovered and my new neurologist is researching how COVID may impact the spasms. I have asked her to look into what impact the vaccine could possibly have on the symptoms also since I can get the shots in late March after I've been COVID Recovered for 90 days or more.
Wow you have been through the wars I hope you’re ok now. I had covid last March as did husband but our symptoms were not recognised by GP at that time (they are now) but we weren’t as serious as you. We recovered after about 2 weeks. We did have Antibody tests in May which confirmed that we’d had Covid. I told my GP to update her file on symptoms, she was in fairness grateful for info but not apologetic. But apart from that I didn’t find any difference in myRLS if anything it was calmer and of course I still took my Pramipexole. I’d be interested to know who your neurologist is, is it a London practice ?
No, I'm in Pennsylvania. For 20 years I have bounced from one neurologist to another - most of them part of a large health plan owned practice and I found I knew as much or more than most of them and I was so unhappy with my care and their knowledge base. When I turned 65 in October 2020 and went onto Medicare then I was free to go to any neurologist, not just the ones within my former health plan. I now have a great neurologist who is very involved in my care and also very well read on treatment options. I've found that finding a specialist who is involved with research and has participated in peer-reviewed publications is helpful as they tend to be more knowledgeable within their specialty. As for the Covid, I was sick and went to the ER on 12/19 just for a rapid Covid test but they kept me for almost 5 hours doing blood work, etc. and finally the Covid test. they said they thought I had CHF and I should follow up with my PCP - which turned out to be a total misdiagnosis as I had a chest x-ray and it showed I had pneumonia. the next week I was still sick so I called my PCP who told me I had tested positive but I was never notified by the hospital. On 12/25 I was so bad I have almost no recollection of being taken by ambulance to that same hospital or having to be transferred to another hospital due to lack of beds. I went into ICU and was asked if I would agree to a ventilator if necessary - which I did not end up needing - but I was put on high flow heated oxygen at 80 liters/minute and that is all I remember for 3 days. I had acute Covid pneumonia and my lungs were ready to shut down. My husband was at home with our daughters and had to ask them about funeral arrangements for me in case I did not survive - I was that bad. My misdiagnosis on 12/19 almost cost me my life. So, today I am thankful - I still wish I did not have RLS, but I guess I look at it a bit differently.
I thought I was augmenting but the sertraline I had been taking for many years was making my RLS worse. Since I stopped taking it, my RLS got better and I’m now back down to the lowest dose of pramipexole... I wasn’t augmenting after all! Not sure if this is your case, but I hope it can help someone!
Can I ask what dose Pramipexole you are on now. I’m on 0.088 pills and took 4 in afternoon but for past 2 weeks I’ve reduced by cutting one pill in half. Amazingly enough this has alleviated my symptoms (touch wood) and I’ve not had RLS for a week now (I started to take magnesium at same time as pill reduction so maybe that’s helped too). Am nervous to reduce Pramipexole further but guess I’ll have to if I’m to come off them.
I’m waiting to hear back from my doctor with blood test results and learn what she proposes I eventually replace it with (after she’s read up on RLS)
I’d value any advice from members of this group I’m finding it so helpful and I’m not in such despair because of it.
I stopped the slow release & am on 1mg. The augmentation is a killer. I reduce by half then up by 1 .for augmentation best to take it an hour before you want to slow down & relax.
Thank you for reply. Not sure I understand by “reduce by half them up by 1. “
My music helps my RLS?!
Chronic rls
hi there flying on sunday for a short break so looking forward to it but!! arms and legs so are bad can anyone help me 
Vitamin D.
It drives me nuts!
