Husband with restless legs and Parkinsons disease

[markland]

Hello

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!

[SueJohnson]

Mayo Clinic Updated Algorithm on RLS at Https://mayoclinicproceedings.org/a...

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.

[markland in reply to SueJohnson]

Thank you Sue I did mean Restless Legs Foundation.

I have joined but still having trouble logging in. Hopefullyb it will work eventually.

[SueJohnson in reply to markland]

Did you go to member portal and under that login? I just tried and had no problems. You might email [e-mail]

[SueJohnson]

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

[markland in reply to SueJohnson]

Many thanks but doctor very resistan tto any cvhange of parkinsons drugs which is why I was hoping that he could try the buphrenorphine.

We,re not really getting any help for RLS syndrome from Parkinsons specialists probably because I think that my husband has both issues.

Is there any reason why he could not take the buphrenorphine as well as the Parkinsons drugs?

[SueJohnson in reply to markland]

None that I know of. Good luck!

[markland in reply to SueJohnson]

Thanks

[Twitchyfeet]

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!!

[markland in reply to Twitchyfeet]

HiI live near Woking in Surrey but would go anywhere as my husband is becoming suicidal things have got so much worse.

Thanks for your post and please give me the details of your neurologist.

[Twitchyfeet]

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

[markland in reply to Twitchyfeet]

Thanks so much I will do that

[Eryl]

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 three 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.