I am so happy that I wrote twice to my doctor, both times over 2 pages, to explain that I think I am not on appropriate medication. I was not comfortable writing the letters as he was a doctor and I wasn't so he should know more about RLS than I do. However, I have spent such a long time on various sites reading everything about RLS, I am becoming an expert.
To cut a long story short, my RLS started over 10 years ago and initially I put up with it, not for long though, I went to the doctor and he prescribed 1 x 0.088mg Pramipexole. This worked fine for about 3-4 years but then stopped working. Doctor said to increase it by one tablet to 2 x 0.088mg. This I did, however, this worked for less than a year and doctor increased it by a further tablet to 3 x 0.088mg. Well that did work for less than 4 months. My RLS was now very bad and I started to get RLS during the day, any time I sat down, in my arms and legs.That is when I started reading up on RLS and I am so glad I did. I realised that I am a typical case of augmentation and I did detail this in my first letter to my doctor.
He prescribed me Gabapentin, to start with 2 x 100mg a day.
To cut a long story short, the initial dosage of Gabapentin did nothing and I am now on 600mg a day. I take 200mg about 4pm and 400mg 2 hours before I go to bed. But the main thing I did is cutting down on Pramipexole, very slowly. I cut down by half a table about 3 months ago, and a further half a tablet 1 1/2 months ago and about a couple of weeks ago by a further half a tablet. I will keep going with the reduction the same way until I am off those things.
Good news is that I am sleeping through the night now. I hesitated writing this because I thought I was tempting faith. Days are still not too good, but I put that down to still taking Pramipexole and augmentation.
But it's the nights I am so happy about. Before that I probably slept 2-3 hours a night, not in one go but on and off. I was so tired during the day. Now I feel much better and I am hopeful that eventually my days are getting better as well.
So there is hope for some of us. I know that the current condition my not last, but at least RLS is giving me a break at night for the moment.
Augmentation
Re: Augmentation
Well done, Ria, I'm really happy you've taken charge of your RLS and are getting sleep. We do have to become our own experts.
I started getting it in my arms but after starting iron tablets that stopped.
I started getting it in my arms but after starting iron tablets that stopped.
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Re: Augmentation
Well done on cutting down your pramipexole. It was the right thing to do and you did so well.
When coming off the last of your pramipexole you are likely to find your RLS symptoms go into overdrive. Sleep is likely to become difficult again because the gabapentin won't be enough to deal with this 'overdrive' and the reduction of pramipexole. it will take a week or 2 to get past this withdrawal and find your base RLS level.
If your doctor would prescribe you an opioid it would ease this Withdrawal.
After Withdrawal You can then assess with your doctor how to go forward. Most of us find a drug combination works best, often an opioid and gabapentin.
When coming off the last of your pramipexole you are likely to find your RLS symptoms go into overdrive. Sleep is likely to become difficult again because the gabapentin won't be enough to deal with this 'overdrive' and the reduction of pramipexole. it will take a week or 2 to get past this withdrawal and find your base RLS level.
If your doctor would prescribe you an opioid it would ease this Withdrawal.
After Withdrawal You can then assess with your doctor how to go forward. Most of us find a drug combination works best, often an opioid and gabapentin.
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
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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Re: Augmentation
Glad to hear that you went ahead and advocated for yourself, that he listened, AND that it is better.
All great things!
All great things!
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
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Re: Augmentation
Ria you're on the right path. How I wish none of us ever had to travel it! But it's the only way we know of out of the mess. Keep posting, and keep reducing the pramipexole, and keep reading. Gabapentin might not be enough to manage it once your withdrawal is over (but it sure would be nice if it was) so see if you can work out a plan with (or without) your doctor.
I wrote a letter to a doctor once. I had already augmented, been put on an opioid, but the dose was too low and on top of that I couldn't sleep (it woke me up, nice side effect - not!). I was really just trying to gather my thoughts for when I talked to her next, but I did such a good job, I thought it would save time if I just gave it to her. So I left it at the clinic for her. That was the beginning of the end of my relationship with her - she lambasted me for giving her a letter, like I was an evil person, as if there was an unspoken rule that everyone knew except me - - but I still got a referral to a sleep specialist out of it![Rolling Eyes :roll:](./images/smilies/icon_rolleyes.gif)
I wrote a letter to a doctor once. I had already augmented, been put on an opioid, but the dose was too low and on top of that I couldn't sleep (it woke me up, nice side effect - not!). I was really just trying to gather my thoughts for when I talked to her next, but I did such a good job, I thought it would save time if I just gave it to her. So I left it at the clinic for her. That was the beginning of the end of my relationship with her - she lambasted me for giving her a letter, like I was an evil person, as if there was an unspoken rule that everyone knew except me - - but I still got a referral to a sleep specialist out of it
![Rolling Eyes :roll:](./images/smilies/icon_rolleyes.gif)
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.
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Re: Augmentation
I have went through augmentation twice. I am on the same medication however a second med was added plus vitamin B12 tablets. I seem to be holding steady----as she goes.
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Re: Augmentation
Going through augmentation twice you will be well aware how awful.itbis. In glad you are at present on a successful regime.
What medications are you currently taking, what was the second med that was added.
It is always good to hear of someone doing ok.
What medications are you currently taking, what was the second med that was added.
It is always good to hear of someone doing ok.
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
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