Buprenorphine good news stories or not

[Shumbah]

Hello all

I am heading to NYC and will be seeing Glen Brooks MD , for those how don’t know he was the the incredibly compassionate doctor who saved my life by successfully prescribing my buprenorphine..

Glen Brooks is a still practicing Anesthetist .

Some RLS patients will still move and raise their legs during surgery and this is what he uses to stop them and he was prescribing for friends and family that suffer this vile disease.

I see Glen Brooks on May 11 th

If you have a good or bad buprenorphine story that I have not all ready received or you would like to update your review with the amount of years you have taken especially important is the lack of creepage .

I will also be sending a copy to Professor John Winkleman in Boston

Rumours that Glen is retiring are not accurate, he us just changing the way he splits his times at the different clinics .

[RLSLearner]

Good to hear from you Shumbah. Hope you have a successful trip!

[Madlegs1]

Thanks for the update.👍💚

[Joolsg]

Hi ShumbahI'm still on 0.4mg of Buprenorphine, since June 2021.

0/40 on the IRLSS, from 38/40 on pregabalin and Oxycontin.

Buprenorphine also saved my life.

I had logically decided to end my life as the nightly torture meant I was barely existing.

The side effects were resolved by taking medical cannabis oil with 20% THC for nausea, and 25mg pregabalin for panic attacks and opioid hot flashes/sweats.

Give my best regards to Dr Brooks. He is one of the few doctors worldwide who understands the torture of RLS and is trying to change things.

Also mention to Dr Winkelman that UK trials of Buprenorphine for RLS are not going to be happening. Professor Chaudhuri's RLS Clinic and research team at King's College Hospital, London say they do not have the staff, time or facilities to do the trial. Bart's Hospital in London said they couldn't do Stage 1 trials, but would be able to take part in Stage 2 or 3.

It's incredibly disappointing and frustrating.

[SueJohnson]

Is he accepting new patients? One person I recommended him to was unable to get an appointment with him. When you see him can you ask him and let me know.

[Shumbah in reply to SueJohnson]

Yes suevhe is still working - just restructured his time at other clinics

[SueJohnson in reply to Shumbah]

Thank you but do ask when you see him if he is accepting new patients.

[Shumbah in reply to SueJohnson]

I will , someone else from Australia just made an appointment to see him

I will check though

[Walras]

Good luck. It would be interesting to see a summary on the results from those taking this medication. It is always hard to find a new solution and convince your doctor to support something they are not familiar with. Thank you for all of the information you have provided in the past and in the future.

[restlessstoz]

Hi Shumbah, I too considered ending my life many times due to the unrelenting nature of RLS and the consequences of the mismanagement of doctors/neurologists with no training in RLS i.e. augmentation for four years. It was only when I found HU, finally understood augmentation, and read your posts that I was able to convince my GP to trial buprenorphine patches. I had exhausted all other options that are within my GP's armoury and many others trialled by the neurologist whom I no longer see. Both my GP and I decided we were better off working it out ourselves.

Early on in my experience of patches, I realised that the they are only effective for me for five days and I had to endure the remaining days by constant movement etc. Following my hip replacement surgery when this constant movement wasn't sustainable- or desirable, an alternative doctor I saw suggested changing the patch at five days. This has been a game changer.

Since finding the level that covers my RLS over 12 months ago -20mcg, and now being able to maintain the dose I haven't had a single breakthrough symptom. Absolutely miraculous and enables me to live a normal life, not one that is constantly affected by the horrors of RLS.

There's a thread just new, that discusses painful RLS and the comments that follow that thread are worth printing out and showing every doctor possible. They show the pain and true life consequences of this condition, whether it's the painful or non-painful RLS and what extreme suffering is happening in so many lives.

Thank you for your work to increase knowledge of the successful treatment using buprenorphine. You have changed so many lives by sharing your experience of this treatment and feeding it back to the doctors that have influence in this medical field.