After years on Pramipexole 0.75 mg long acting , the inevitable augmentation occurred and I got off it with great difficulty. Since that time, August 2019, I have had very little sleep. I have tried tramadol, codeine, oxycodone, lyrica, Gabapentin, clonazepam, MSContin and various combinations. I have emailed Dr Buchfuhrer, with no suggestions from him.
Last week I saw a sleep specialist for the third time. His area of expertise is sleep apnoea. He gave me a prescription for Methadone 10 mg. After 2 nights with no sleep, I am now getting an average of 5 hours sleep per night. It is heaven for me.
This forum is a lifesaver for me , and for many others. So many of you give us all so much help and support and so much of your time to get us over the terrible times we all suffer.
Thanks to all of you for so much .
Mahia36
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wairoa36
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That is good news, Mahia. I hope that the 5h sleep will help you to overcome the exhaustion due to te long time of getting very poor sleep. If so, I hope/suspect your symptoms will reduce further and your sleep will improve to almost normal. Because, in my case and I think with many others, tiredness just increases the RLS symptoms. Often, it is a vicious circle. Let us know how you het on!
Great to hear you've got some relief after "going the rounds" of other medications.
So pleased to hear that about Methadone. I’m currently searching for a dr to prescribe Methadone but neither my GP, Sleep Specialist, or Neurologist can prescribe. Do you mind sharing who you saw ? Even in a PM.
Like Vichic I am very interested in methadone so would also like to know how you got it. I am optimistic it would help with my pain and my RLS impulses
In reply to Vichic and Martino, I am in Australia which may be why I was able to get the prescription for Methadone.
The sleep specialist more or less coached me to say I had excruciating pain when he asked me what level of pain I was suffering.
If you check in the Oxford Dictionary , you will see that what RLS sufferers endure is certainly described under"pain".
. ie strongly unpleasant bodily sensation such as is caused by illness or injury, or mental suffering or distress.
He also said he needed to start with the lowest possible dose and would be willing to titrate upwards if necessary.
He also knew from my GP that I was ready to end it all, having reached the end of my endurance.
He is not an RLS specialist but rather deals mainly with sleep apnoea.
If you are in Australia and want more info we can perhaps do it privately but I do not know how to do that on this site.
I am so thankful to have this help and wish the same peace for all RLS sufferers.
Wairoa36
I am so happy for you. As I have shared, methadone has been a life saver for me as well. I have been on it about 2.5 years and sleep so much better with it. Rarely have breakthrough RLS which is easily dealt with by the rare oxycodone. Only recently had to increase the amount up to 15mg twice a day from 10mg twice a day due to the progressive nature of the disease.
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