Irreversible brain damage?

[welschrispy]

I have been taking Pramipexole for about 15years. For the last five of those years the dose has been 6mg daily. Six times the maximum dose. I spent six months cutting back and for the last three months I have been taking 3mg. I also take 100 mg tramadol to help with withdrawal and augmentation and occasionally 100MG Cannabis oil in hope of getting some sleep.

I have a new doctor who says that my condition is incurable and I have to just "put up with it" She intends to get me off the tramadol asap. Unfortunately I am going to end up with no doctor if I don't comply. I am73 years old and this is not a good idea. I am already at the limits of what I can tolerate. The spasms are almost continuous now and I am going through the most terrible mental and physical torment without cutting back the Tramadol and I am going to run out soon.

It was pretty gruesome work cutting back the Premipexole but the condition has deteriorated considerably since halving the dose. I get the impression that this is Augmentation and presumably the longer I wait the worse it will get. There are no signs of recovery and I can see only complete disaster ahead.

I am thinking that the huge dose of Pramipexole has cause irreparable brain damage and that, even if I can get my hands on a supply of Buprenorphine, (I have mild COPD and use a Cpap forsleep Apnea) it is unlikely to do more than mask the damage?

None the less, I want to try!!!

But how do I get the prescription? Can Dr Buchfurer prescribe internationally? Can any doctor? Are any of these online Pharmacies for real? I have an appointment with a Neurologist in January but I suspect that all Canadian doctors have been warned not to prescribe Opiates and besides, he is unlikely to over rule my GP.

I am not sure what my question is. I don't feel I can do this for much longer. I feel like I have been issued a death sentence. But...if I can cut out the premipexole will my brain recover or am I just postponing the inevitable?

Thanks to all of you on this incredible site for the advice and support I have received during this terrible process.

[LotteM]

Oh Chris, this sounds like a horrible situation! And you have done so well already halving your enormous dose. You can take legal action against the doctor(s) who prescribed this, and maybe also against the doctor who wants to take a currently partly effective medicine off you without knowing about and acknowledging the severity of the disease and more importantly about your situation. But, I think this is far from the first or second thing on your mind. That would be getting access to a knowledgeable and understanding doctor.

Have you been in touch with the US rls.org? They may know a knowledgeable doctor in Canada. Also , if you are a member you could pose this question on their forum. Have you searched this forum? I am afraid there are only very few people from Canada.

You mention getting buprenorphine somewhere. Illegally I suspect. I once tried to get prescription meds online, but it was very fishy and I didn't succeed. I would happily send you one of my leftover and still well within limits box of Temgesic, but I am not sure I would want that if I were you. Also, one box may not last long enough

The best thing I can share with you is my experience with kratom. Can you access it in Canada? If you can, please consider it seriously. I found it worked at least as well as buprenorphine. Especially the red vein borneo. But it would be good, if you go that way, to rotate strains. Dougg, Involuntarydancer and TheDoDaMan have quite some experience. And if you search for posts and replies on kratom you will also find replies from raffs, now 'hidden', unfortunately.

I hope you find a better way soon. And I hope there are others with more and vetter options for you. Stay strong although things will look bleak I assume. Wishing you strength.

[welschrispy in reply to LotteM]

Dear Lotte M,

Thank you for this really kind and helpful letter. I keep hearing about Kratom and I will check into it as you suggest. Thank you so much for your kind offer to send me some Temgesic. No matter if it's not enough. It will help me further cut down on the Pramipexole. I am forever grateful to you for this generous offer.

Very best wishes,

Chris

*I have removed your address for your own security. You can of course private message your address to Lotte via Chat on this forum. Kind regards, Kaarina

[Joolsg]

Chris, you have been treated so appallingly by your doctors. Their complete ignorance and negligence in over prescribing pramipexole has caused this. as lotte says, you should definitely consider legal action as the risks of augmentatin have been known for over a decade.They cannot take away the only med that's helping you reduce pramipexole. tramadol is probably not strong enough- Oxycontin would be better.

Well done for getting this far. sdaly the intense 24/7 RLS will not stop until about a month after you have completely stopped pramipexole.

as Lotte advises, kratom would be the best thing you can get to help you now through the withdrawal and cannabis with at least 20% THC.

get in touch with a lawyer. There have been class actions in the USA over these drugs and a case in the UK where the neurologist failed to warn of the high risk of ICD and the patient developed psychosis.

Print off the Mayo algorithm and send to your doctors. It makes it clear that opioids are often necessary where other drugs have failed, though you should start on pregabalin first to see if it helps when off pramipexole. RLS and your RLS is NOT incurable. Your doctor is so wrong. Buprenorphine and methadone work very well for refractory RLS. I'm one of them. My RLS was 36/40 on the IRLSS but is now 0/40.

I know kratom is illegal in several countries but it does help during DA withdrawal.

[Joolsg]

By the way Chris, your dose of Pramipexole is actually 12 times the maximum dose. Here's the Mayo algorithm. It lists the max doses whichwere in place before they did the algorithm. Even more reason to see a lawyer.mayoclinicproceedings.org/a...

[SueJohnson]

Unfortunately your doctor is right about one thing. RLS is incurable, but the symptoms can be managed. I echo Joolsg in that you should print out the Mayo algorithm. Hopefully the neurologist you see will be more knowledgeable. And no you can't get medicine online without a prescription.

[serengazer]

Hi there.

First of all I feel sick about the way you have been treated by the doctors here. It has been so wrong on so many levels.

I live on Pender Island which is quite close to where you are. I was born and raised in Vancouver. I have a specialist, Dr Tuck, in Victoria who treats RLS and he might be of help to you. Recently, I also talked to a sleep specialist/neurologist in Nanaimo called Dr. Eardley and he highly recommended methadone. My family doctor here on Pender prescribed Metadolafter reading some report on its efficacy for treating RLS.

My life has changed! I actually have no RLS symptoms anymore. They are gone. If I drink white wine or more than a glass of red, Sucralose etc I can faintly feel them but otherwise have not experienced an episode for over a month. Let me pass on the numbers to you

Dr Tuck Neuro. 250 519 1859

Victoria

Dr Eardley Neuro. 250-591-0654. Nanaimo

[e-mail]

There are some good articles on this site re. Methadone. I shared these links with my d to and I think it really helped in getting treatment!

All the best

TS