I have only posted briefly before but read most of the posts.
I am really in complete despair with regard to my 75 year old husband and the worsening of his RLS symptoms which are now intolerable.
The situation is that he has had worsening RLS for about 5 years. Initially he found relief with opiods, and then with Pregabalin, Pramiprexole and Gabapentin at different times (not all at once!).
He has had to stop using both Pregabalin and Gabapentin because allthough they helped he has had thyroid eye disease in the past and they have caused problems with his eyes.
He has only used Pramiprexole for shortb periods and it is no longer effective. Ditto co-codamol.
THE BIG PROBLEM is that he was diagnosed with Parkinsons disease last year although I realise that he has had it for at least 7 or 8 years.
He now takes Cabidopa/Levodopa. Altghough this is not an actual dopamine agonist it works by increasing dopamine in the brain.
If my befuddled brain has got it right this would make the RLS worse.
In the last month his symptoms have massively worsened and although his Parkinsons symptoms are being helped the RLS is off the scale and neither of us are getting any rest.
I now want to try to get Buphrenorphine for my husband and realise how difficult that is going to be.
I have seen the names of consultants on here who will have a video consultation and we can pay privately. PLEASE can someone give me the contact details of these consultants and where they are in the U.K. so that I can get some help.
Additionally I have tried to join the American Restless Legs organisation so that I can get the updated guidelines and information about buphrenorphine but I can't get in and my attempts atre coming to nothing.
Again can some kind soul give me details of how to access these guidelines which from reading on here explain about dopamine and buphrenorphine. I thought that I had kept all this information but obviously not.
We are seeing a very nice G.P. tomorrow at what is a specialist hub for oldies In woking, Surrrey where I live. If I had some information to give him then it would be very helpful.
I am sorry to moan on this forum but I am 70 myself with chronic fatigue syndrome, my 40 year old son has ongoing health problems and is staying with us whilst he recovers from an operation and my husband is unable to do anything to help his own problems so to say that I am stressed doesn't begin to cover it!
This has all been going on for years but not to this level.
Help!
Written by
markland
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You can join the Restless Legs Foundation for $40 which has excellent information at rls.org This is probably what you meant by the American Restless Legs organization as I have never heard of this and can't find any information on the web.
Unfortunately carbidopa/levodopa can lead to augmentation and make RLS worse like a DA.
Gabapentin is used to improve the rigidity, bradykinesia, and tremor of Parkinsonism. You should ask your doctor about Rasagiline (Azilect). Rasagiline is used for Parkinson's and has been used to treat RLS. It is not a dopamine agonist."The hope is that Rasagiline, because it prolongs the effect of existing dopamine, instead of producing more, will not come with adverse side effects," Intense exercise can slow the progression of Parkinson's but will exacerbate RLS, however I would think that would be worthwhile since Parkinson's is a more serious disease
hi! Do you mind if I ask whereabouts you live? I have just had an appt with a neurologist (privately) and I was very impressed. He has completely changed my meds and was so empathic with RLS. He said nobody understands the severity and pain that goes along with RLS!! He recommends a small cocktail of drugs that need to be monitored, slowly slowly increasing to the required amount, pregablin, targinact/opiod. I believe it was worth every penny. I’m prepared to give it a go if he’s going to monitor me on the nhs. Fabulous treatment!!
I totally get you where you are coming from. His name is Dr Ben Simpson at the Spire hospital in Leicester. You can Google him. I had to wait 6 weeks for my appt but it was worth it. If you google him, you will see he specialises in Parkinson’s. Good luck. I sincerely hope you get some help. X
RLS and Parkinson's together suggests his diet contains too much carbohydrate which raises blood sugar, causes neuro inflammation and nerve damage. Try reducing his carbohydrate intake gradually and see if things improve. Take at least six weeks to perform the reduction or he could suffer from 'keto flu' as his body will struggle to adapt. Reducing carbs will mean a reduction in calories so it's important to increase fat consumption to make up for the carb reduction. You can easily do that by putting a knob of butter or drizzle of olive oil on to all cooked meals, adding cream to hot drinks and soups etc.
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, playing and listening to music, creative hobbies, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If he is taking any I may be able to provide a safe alternative.
Dr Robin Fackrell at the Sulis Hospital in Bath is a movement disorders specialist and one of the few consultants who will prescribe Buprenorphine (subject to your GP agreeing to write the scripts). He also specialises in geriatric medicine. He asks for a GP referral, but that shouldn’t be a problem.
He’s very sympathetic and agreed to trial me on Buprenorphine at my first appointment. His fee is £265. Might be worth checking the Surrey drug formulary to check whether Buprenorphine is red-listed (just Google it and search for Buprenorphine. I did try looking for you but the site isn’t loading). If it is, Dr Fackrell might be able to issue private prescriptions, or you could try registering as an out-of-area patient with a practice in an area not too far away that does not restrict opioids.
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