I'm scheduled to meet with a specialist on 31st October to discuss RLS DA Augmentation/Refraction with the hope of changing to another drug on the Mayo Updated Algorithm.
Given I've been on Pramipexole for over 10 years, should I expect success from Gabapentin? I have managed to reduced my Pramipexole daily intake from 4 x 0.125mg to 1 x 0.125mg, but life is completely dire. As of today I haven't slept more than 6 hours in the last 72 hrs.
I want to go in to this initial meeting with as much evidence based research and information as possible.
TIA.
Written by
FloridaRN
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It is a horrible experience - these last few weeks of withdrawal.
In my experience, I used a combination of sleeping pills ( to get some sleep, maybe every third night) Clonidine ( to help ameliorate the pains) for the very last fortnight . And paracetamol/ Acetaminophen to just help generally. If your doctor is willing to prescribe opioids, then Tramadol or Oxynorm 5mg is good for breakthrough.
I found the Matt Finch site very helpful for general advice on coping with withdrawals.
Gabapentin should be started 3 weeks before finalisingthe Pramipexol, as it takes that long to start being effective
You may experience withdrawals for a few weeks/ months as an extended form of suffering. Have a look at Dr Buchfurer s site for guidelines. You can also email him direct for free.
. Southern California RLS group. I can't think of the link, but you can google it.
Avoid taking Magnesium within 3 hours of taking Gabapentin.
I had been on Pramipexole for 19 years. I had also reached the maximum dose of 0.5mg, and my symptoms worsened. Over months, I started to take increasing amounts of pregabalin. At 175mg of pregabalin, I reduced my Pramipexole dose to 3 x 0.088mg tablets. Any lower, and my symptoms became unbearable. I am now taking 225mg of pregabalin and will try to reduce my pramipexole dose further in a month or so.
Meanwhile, in the last few months, I started taking 60mg of Iron Bisglycinate (with Vitamin C) every other day on an empty stomach. My Ferritin levels are within guidelines but on the low side. My B12 levels are also within guidelines but low, so I have started taking a supplement to see if that helps. I have also been taking magnesium supplements at bedtime for 2-3 years.
Today, my symptoms are probably the best they have been in decades. My goal is, over time, to ween myself off pramipexole completely.
From my experience, the best advice I can give is to say that for best results, take it slow and be prepared to experiment (within the guidelines of medical advice and best practice) to see what works best for you because, as we all know, everyone is different. Try not to change too many things simultaneously, making it harder to determine which one caused the change in symptoms.
Well done for getting this far. It' s an incredible achievement. Most people suffer horrible withdrawals at this stage and need a low dose opioid to settle the flare ups.
I would stay at one pill until you see the neurologist on 31 October and hopefully he/she will prescribe opioid cover and discuss the meds to replace Pramipexole.
As Madlegs advises, Gabapentin ( and Pregabalin and Horizant) take 3 weeks to be fully effective so it's best to start 3 weeks before you take your last dose of Pramipexole.
In the meantime, if you can get cannabis in Florida, it really helps the withdrawal symptoms and will give you short amounts of sleep.
Sleep whenever and wherever you can. Sleep hygiene doesn't work with severe RLS or when going through withdrawal.A
Yes, I shall stay on 1 x 0.125mg Pramipexole for now. Ideally I don't want to start any controlled drugs if i can avoid it., However from feedback on here and speaking with Dr Buchfuhrer- this does appear the most successful route (given the severity of my DA augmentation) for a good qualityof life, post DA.
I'm so frightened but equally excited at the thought of getting some quality of life back.
Pramipexole and Lyrica have made it possible for me to sleep. Unfortunately, sometimes the day after I have mild tingling in my extremities.Took gabopentin prior and no results
I tried coming off it very slowly as well but life was dire. At one point I thought I would end up in hospital. I was already on gabapentin for neuropathy so I was put on OxyContin to help. After trying without pramipexole for a month I decided to go back on the slow release one and 6 months on I’m good. I do have severe RLS.
Good luck though I will hopefully one day have to try again
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