Cutting a long story short, suffered with RLS for over 45 years and the only med that really worked for me was Ropinerole for 10 years and then Augmentation set in. Since then I have tried, Pregablin, Gabapentin, all DA's, Tramadol, Codeine and both oxys. Some of them worked somewhat but the side effects were awful, extreme tiredness during the day, nausea, often I felt really agitated with them and they all affected my tummy. I suffer from IBS which doesn't help. Maybe some of them I didn't take long enough but there are only so many side affects you can handle and try to go to work and be a normal human being. I have taken kratom for over 10 years and at the moment it works 85% of the time. It just means I can't go abroad as it's also illegal in many countries and one day I may not be able to get hold of it. Without it I don't think I would still be here.
The last med I tried was in January which was recommended by a neurologist was Sinemet, didn't realise it was a DA. I was only on it for a fortnight and my arm became so restless. It's took me over 4 week for my arm to settle down after I stopped taking it.
I have an appointment at the health centre on Tuesday and I'm guessing the doctor is not an expert in RLS. Just wondering what meds I should try to convince the doctor to prescribe me. Reading through the Mayo clinic info it seems that an Opioid could be a good option but I'm doubting they will want to prescribe one. Help!
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Jezee
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Yes you need buprenorphine. Didn't you see Dr Paul Dorman or another doctor there? Was he willing to recommend it to your GP? I also remember Dr. Uma Nath who prescribed sinemet said wouldn't rule buprenorphine out but wanted to try sinemet first.
Hi Sue, the appointment was cancelled and rescheduled to this Tuesday. The doctor is Adam Cassidy. Can't remember the doctor who prescribed the sinemet but she was Indian. She also said that she couldn't guarantee to see me again. This was at Sunderland hospital. When I see the doctor on Tuesday I will tell him what she said. Fingers crossed. Thanks for reminding me.
Checking on him, he doesn't seem to have much if any experience with RLS so I would print out the appropriate sections of the Mayo Clinic Updated Algorithm to show him.
My wife says that my trouble is when I go to see the doctor or neurologist and they ask me how I am I normally say ok. She says that I should show my true emotions. The trouble with that is if I do i might just break down and I'm not one to show this. I have many days that when I go to bed I wouldn't be bothered if I didn't wake up. That's what 47 years of Rls does to you.
Like you- pregabalin , gabapentin, tramadol and Oxycontin didn't work for me.I wasted 5 years on 150mg pregabalin and 25mg Oxycontin.
Professor Ray Chaudhuri refused an iron infusion saying it was too dangerous ( it isn't- his knowledge is outdated). So I persuaded my local hospital to give me an iron infusion. It made no difference sadly.
So, I researched and followed Shumbah's path and pushed for Buprenorphine.
Again, Ray Chaudhuri refused. But I kept pushing & eventually he sent an email to say he wouldn't object if my GP agreed to prescribe Buprenorphine.
It stopped all RLS the first night
You cannot take kratom with Buprenorphine. So if you get sub lingual pills, stop the kratom.
Common side effects are nausea, sweats,panic attacks, constipation and insomnia.
But each side effect can be treated and most will settle after 2 months.
For nausea- I used medical cannabis oil with 20% THC ( only available on private prescription). For panic attacks /anxiety I added 50mg pregabalin and after 2 months slowly reduced down to 12.5mg.
For insomnia and sweats you can also take pregabalin. Or the newer sleeping pills ( suvorexant).
Constipation can be resolved by diet and hydration or lactulose.
Thanks Joolsg, I forgot to add I also had iron infusion even though all my ferritin levels were very high and it didnt help. Out of interest how do you know kratom cannot be taken with Buprenorphine. I've taken it with all other meds (whilst decreasing the dosage) and it seemed to be ok. Unless the side effects were off the kratom 😒
I'm sure that Jools will respond shortly, but note the following from kratom.org:
"You should never combine buprenorphine and kratom.Even though buprenorphine is one of the safer opioids, it still carries all the inherent risks of opioid use. Taking kratom alongside buprenorphine increases these risks."
But instead of kratom helping RLS 85% of the time, buprenorphine could work 100% of the time. As Jools writes, there are side effects with buprenorphine but she was able to control these. Kratom.org give interaction with opioids their highest level of risk (alongside tricyclic antidepressants).
Kratom works on opioid receptors and Buprenorphine knocks other opioids/opioid type substances off the opioid receptors.Buprenorphine is used to help patients off high doses of other opioids and kratom.
Kratom is a strange substance. You develop tolerance quite quickly. That doesn't happen with Buprenorphine.
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ADvice for next GP appointment
What next!
Fidgety Female
Augmentation? I'm guessing yes.
