I am bowled over my the kind response I received concerning my battle with restless legs syndrome I never expected to receive so many replies I will reply to all all of you eventually
Just to say in live in the Uk wast Yorkshire and I’m male aged 82 and suffered badly with rls for many years and I’ve tried most things over this period of time with little lasting success but this doesn’t mean I’m willing not to listen to anything new
Thank you one and all
Hooch
Hoochybaby, Are you still on the dreaded 0.088mg of pramipexole? If you are, no amount of codeine or pregabalin will help you.
Did the neurologist discuss the pramipexole and that you're suffering augmentation?
I'm so worried about the medical advice you've received so far.
As soon as you reply about the pramipexole, I'll get back to you.
You need to see someone who actually knows about. augmentation
Thank you JoolsgNo I refused to go back on to Pramipexole having suffered augmentation in the past my neurologist wanted me to go back on to a low dosage of Pramipexole but I said no!
She says she knows about augmentation but I wonder
She has mentioned patches of a agonist but reluctantly said no again knowing the hell I suffered coming off the drug in the past
At the moment I’m trying sleep hygiene and relaxation can’t think of anything else maybe I’m too old?
Oh hoochybaby,They clearly don't know about augmentation or would not have suggested putting you on the patch, another dopamine agonist. That would quickly cause augmentation again.
I would agree with everything others told you. Your doctors are incorrect telling you to get off codeine. As Elffindoe advises, they are confused about the advice to get patients off opioids for pain. People with RLS DO NOT take opioids for pain. We take them because they affect the same receptors in our brain that dampen down the RLS sensations. We are not addicted to opioids- we are dependent on them in the same way thyroid and diabetes patients are dependent on their meds. if this disease were treated as the life threatening, life long, serious neurological disease that it is, the medical profession would listen to us. If it were taught at medical school and during GP training, they might listen to us.
Codeine is the least effective opioid. As others have advised, you should ask for a second opinion and if you can afford it, see a private neurologist who will give you adequate treatment.
Dr Guy Leschziner at Guy's hospital does private appointments and most are now done over the telephone. They can take a full case history easily so you shouldn't need to travel. I know he has prescribed a low dose of buprenorphine to one of his private patients. My only reservation about buprenorphine in your case is that it does cause a racing heart so you will need to discuss your heart issues fully.
There is also Targinact, as mentioned by others. There should be no objections to that as it is licensed for RLS, although plain oxycontin is cheaper and works just as well. Targinact has naloxone added to avoid opioid induced constipation. But just take magnesium citrate at nightand drink lots of water. The average dose is 30mg a day, taken as 15mg twice a day, 12 hours apart to avoid mini opioid withdrawal.
Here's the NICE link. Print off and show to your GP and neurologist. I also attach the link to the RLS OPIOID study in the USA which shows low dose opioids are safe and effective for refractory RLS like yours where all the other drugs have failed. I really hope they educate themselves about this disease as it's very clear they are giving incorrect advice.
If you want to email Dr. Buchfuhrer in the US, this is his email. He's an RLS expert and the co author of "Clinical Management of RLS", 2nd edition and has written many research papers on RLS. You can print your email to him and his reply and show to your GP and neurologist. I would hope they would defer to a world RLS expert. He replies within hours.
somno@verizon.net
Thank you.
Thank you
Thank you!!!!!!!!!
Keep on posting - Thank you
A big thank you
