Hello and thanks for the welcome and about me

Whether new to RLS or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
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SleeplessinSWF
Posts: 1
Joined: Wed Nov 08, 2023 10:13 am

Hello and thanks for the welcome and about me

Post by SleeplessinSWF »

I am just shy of 70 and I can trace my first jumpy legs back to my mid-20's at a concert. Fast forward to my 40's and it was more like RES - Restless Everything Syndrome, up into my arms and a squeezing in my midsection and I was driving my fingernails into my legs trying to stop the sensation --- when around this time, I met my husband and had the amazing discovery from his Mom - who told she too suffered AND - there's a drug for this?? And I began a whole new life, with Mirapex/Pramipexole allowing my freedom to sleep!! The only bad times were the occasional oops when I forgot to take my pills - and the NEXT night was hellish.
But a year ago the 1 mg. wasn't hacking it, so my PA suggested switching to Ropinerole. OY! I toughed it out for a week and went back to Pramipexole and determined to up it myself to 2 mg. and then my PA agreed and things settled down.
What brought me to this forum was being blindsided by COVID and taking Paxlovid, which may or may not have triggered it, but I experienced the worst night ever, ever, ever. I was dizzy from both medications and exhaustion and trying to "walk it off" with a cane to steady myself going in circles around my patio at 2 a.m. until about 6 a.m. when I finally slept. The next day I decided it split up my dosage throughout the day and it helped some, but still a bad night. So, of course, I'm searching the internet, seeking that Holy Grail of sleep and I see that crazy suggestion pop up all the time. The Bar of Soap. Pffft. Really. :roll:
Well, sez I what have I to lose, right? And hubby just happens to have a new, still in the box bar of Zest. So I pop it under the covers.
And, of course, take my meds. But, dang, didn't I also have a totally peaceful night. And ever since then (2-1/2 weeks ago).
And, that bar of soap is still there, under fresh sheets and it is staying there.
P.S. I also don't walk under ladders; throw salt over my shoulder when I spill any and I knock on wood (or my head as substitute) all the time!
I also have an new doctor who insisted it is all due to low iron and viola isn't my Ferritin off the charts at 165 (I eat alot of arugula, salmon, avocados - lots of iron rich food!).

Polar Bear
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Posts: 8824
Joined: Tue Dec 26, 2006 4:34 pm
Location: United Kingdom

Re: Hello and thanks for the welcome and about me

Post by Polar Bear »

The bar of soap is something that we've all heard of and in desperation many of us will have (unsuccessfully) tried it. Generally, any success will be thought to be a placebo effect. However, if it is working for you, good luck and long may it continue.

My symptoms started in my mid 30s, I'm now 73, and I also walked around the patio in the middle of the night because the pavers were icy cold and somewhat soothing. I have sat in a theatre, nipping my legs.
it took a long time before I achieved a reasonable treatment regime which is now cocodamol and pregabalin.

For many years I was unmedicated. I then struggled with Ropinerole for about 12 years ending up taking it at a very high dose, way above the recommended dosage. Eventually I realised I had augmented and the answer was to come off it.
Your 2mg dosage of Pramipexole is much too high and it is likely that you have augmented. The max dose of Pramipexole is considered to be around .5mg/.75mg.
You will need to wean off the Pramipexole and this will be difficult but very necessary. If your doctor is educated in the treatment of RLS hopefully he will prescribe a low dose of opioid to help you get through this. However, I wonder how knowledgeable is your doctor given that you have ended up on high dosage of 2mg Pramipexole.
Then to consider the next step in treatment which is likely to be Pregabalin or Gabapentin.
The link in my signature is very informative.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

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