Hi everyone as you know know October 29th will be 3rd anniversary for 2mg Buprenorphine.
Although the Buprenorphine worked from night one what I did not expect was the PTSD .
I did struggled with PTSD I continued on helping other access buprenorphine in as many countries as possible. I think you will agree once we are well all we want to do is live but we must not leave others in the dark.
Thankfully the struggle with PTSD has not won .
I have gone back to painting art which has been very cathartic I have also recommended this to other RLS survivors who have also suffered PTSD post buprenorphine success.
The art appears to be helping them to.
For those interested instagram page kestersart
I will be exposing RLS on all art platforms.I read yesterday the percentage of RLS sufferers is 5 to 15 percent and they are only the documented cases , likely lot higher.
I would like to say to you all success stories PRINT them off and file them.
Information is vital in educating the younger doctors as they come through.
Always remember Willis Ekbom disease is not the medical curriculum so they are not educated about RLS they are also worried about opioids which I am certain they all have some in their own medical cabinet at home.
Every time I visit my doctor I take him sprint off of the new buprenorphine success stories.
I book a long appointment so he has to read them, and he scans them into my medical file.
He knows the fight I have had to get to this point.
Better to be prepaid incase you unavoidably have a change of doctors.
Anyone with Buprenorphine success stories please always add your country.
final side note
Buprenorphine means I dream every time I sleep day or night.
That was certainly new for me , and it it means my sleep is high quality and healing.
Written by
Shumbah
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I just want to thank you for all you've gone through to help bring Bupe to to those suffering. I'm personally doing well on low-dose methadone in the US, but recognize that it's difficult to access in many places. Your hard work is an inspiration to us all!
I just started a low dose of methadone. But am currently on 2mg Neupro. If I don’t take the Neupro I will have some serious restless legs. The withdrawal from Neupro can be horrible. Do you have any experience with methadone used as a substitute for Neupro or maybe even a larger dose of methadone for a time so that you can be weened off Neupro? I had a doctor that suggested it that way but has since become so toxic I can no longer be his patient. Thank you for help.
I was on Neupro, which was ineffective, before I started the methadone regime. My first dose of methadone, at 10 mg per day, worked spectacularly, and has, ever since. If you have been on Neupro for a fairly long time, you may want to taper off it rather than just quit. I was on it for just a few weeks, and didn't have to. You doctor's recommendation sounds sensible to me. Do you mind sharing why your doctor relationship had become toxic? Best of luck!
yes the doctor in question refused to taper me off of belbuca. He knew Inwas moving and the new country I was moving to didn’t have Belbuca. I aldo had to fight with him to write me a letter saying that I was at a higher risk for Covid 19 even after treating me for 2 years and knowing my risk factors. And finally, when I was forced to stop driving because of daytime drowsiness and insomnia AND daytime drowsiness had my boss question my effectiveness after 26 years of teaching, the doctor refused to write a letter to my employer that would support receiving an early pension. A pension that would pay me enough to afford to stay in the US and afford a decent lifestyle. Instead I left to fend for myself on a reduced pension. He said that my restless legs weren’t that bad and even though I had accompanied insomnia and daytime drowsiness from the medication and sleep studies that showed severe restless legs, severe sleep apnea and severe involuntary limb movement he would not write or even write in conjunction with another doctor concerning my condition.
Appreciate your information Shumbah - At this time in my life my illness is being managed with medical cannabis but I am 73 and hope to live until I am 100 so having knowledge about this medication is very useful.
Hi Sumbah, I too want to thank you SO much for speaking out about buprenorphine. After years of augmenting on pramipexole , and a whole pharmacy of meds that the neurologist added to the mix, which he thought would help but didn't. ,, the suffering and trauma of RLS 24/7 was horrendous. I tried a whole raft of different drugs with no success, I read your posts and asked my GP if I could try buprenorphine. He said he couldn't prescribe Temgesic without difficulty (I'm in Tasmania, Australia) but he was more than happy to give me Norspan patches. I can't believe how much relief it brought from the very first patch and total relief at the right dose; for me it's 15 mcg,
I have continued on the same dose for the last two and a half years. My only problem was that I didn't sleep soundly for two years due to the opiate alertness that I experience with any opiate. I was tired to the point of falling asleep mid sentence at work and in meetings. Finally I read someone's post about gabapentin helping with the over active brain and again my (wonderful) GP gave me a prescription for it and I titrated up to 300 mg. For the first time in two years, I dreamt! Now I am still managing on the same doses and life is brilliant.
For the first time, I'm finding I can function relatively normally and I'm so grateful to you and your wonderful campaign to educate and inform us and share what you have discovered. Thank you from the bottom of my heart!
Thank you too, to Health Unlocked, without the forum and the wonderful people here, I would never have known about augmentation either or survived the nightmare that is weaning off a DA!
Ask you Gp Should they ever leave who they would recommend for you to get the same care and could you pay for a 3 person consult to hand over should that day occur.
I went through this process and the staff said I was the only patient he did a hand for and with.
We have to stay one step ahead
I am so thrilled , I actually cry when I read peoples messages when they finally get relief .
I also show my husband and give him thanks for all the trips to the USA
Absolutely Shumbah! I tell everyone about my success with buprenorphine... and the evil DAs as well. I'm absolutely horrified by how many people in Australia are still being put on DAs. Thanks for the tip about a doctor progression if my GP retires. I've already thought of this because he's only slightly younger than I am and I've just retired... well, half retired! I did raise the question last month about whether he was considering it but now I do believe I also have to ask the question as you have posed it.
Also, for all of us with RLS I believe we should all have an Advanced Care Directive in place in case God forbid, we end up unable to make our wishes known and that states very clearly about our RLS and how it is being treated and to explain the constant need to move etc. My greatest dread is getting dementia and being unable to explain my symptoms and having my patches removed and not continued! Which also includes telling those who will be in charge of our future care (family) about our treatment and desires should we be unable to communicate.
Thanks for sharing your wonderful news! I started on Methadone 2 months ago and have not slept this well for 20 years. I have so much energy now. And on only 2.5 mg (I cut 5 mg pill in 1/2.) I too am dreaming which i think the same as you, I'm finally sleeping deeply enough to dream! I hope this lasts for me as well.
I was at the cliff edge ready to die from a lifetime of RLS. A angel from Australia contacted me and helped me with a great doc in California who gave me this life saving medication.It has been a year and a half now and I to have dreams. I still struggle with PSTD and insomnia,so my sleep is very short but, I'm alive because she reached out to me just like u are doing,Im for ever grateful for folks like you two for staying on these sites and giving hope to others.Thank you so much.❤️
I cannot thank you enough Shumbah. I was seriously at the end of the road. After severe augmentation and horrific withdrawal on Ropinirole, I spent 5 years on Oxycontin & pregabalin. They were not controlling my severe nightly RLS and Professor Chaudhuri told me there was nothing more he could do. 4 or 5 hour's broken sleep was the best I could expect.
I dreaded nighttime.
Your post gave me hope & I pushed Prof. Chaudhuri for Buprenorphine. He was initially very reluctant but then emailed to say he would have no objections if my GP agreed. Rather annoying because most GPs do not agree with prescribing opioids. Luckily, my young GP agreed to prescribe Buprenorphine on a trial basis and I slept 9 hour's straight through the first night. I started on 0.8mg which was too high. 0.4mg works for me. ( severe nausea & panic attacks were side effects but I managed to sort both- cannabis for the nausea, 25mg pregabalin for the panic attacks).
A year later I am still sleeping 8 hours every night and zero RLS.
So thank you Shumbah. Your post and information transformed my life.
There are a few of us now in the UK who are on Buprenorphine. It works brilliantly for most but not for everyone sadly.
You are all so very welcome, we have to keep this going for our children and our children children.
I have done up big files and noted them in my will so this information is not lost.
I have every good testimonial printed in files as well.
I am paying someone to come in and work out how to file them electronically so they are easy for me to email them all to people in need in one push of a button.
I am getting ready to mail a hard copy of them to
DR J Winkleman
Glen Brooks.
Finger crossed it becomes recognised mainstream treatment and we do not have to continue jumping through hoops when doctors retire etc.
It will be nice when we do not feel we are being judged ,scrutinised for suffering one of the cruelest conditions on the planet.
I have heard foremothers who have suffered PTSD and I have gone back to painting which has helped me greatly. Interestingly others who have suffered PTSD with a little help have also started painting they to have found it has helped them.
Not sure if you are on instagram you can check out my loud style
I will look out for it. PTSD is very real for RLS patients. I spent a year after Ropinirole withdrawal suffering anxiety and unable to sleep in the dark. I had to have the light on constantly. I had never suffered anxiety or depression until I went through augmentation and withdrawal. I still have flashbacks to those awful times & the 5 years on Oxycontin which didn't help much at all.
I've found a doctor who follows the Mayo Clinic Algorithm and have an appointment with him next month. I'm currently suffering severe augmentation from Pramipexole. I know from here and messaging Dr. B, that Buprenophine is the gold standard treatment for augmentation. Do you have any advice on what i should hope to be prescribed e.g. patch, tablet, Buprenophine with naloxone? I don't want to commence any other opiod other than Buprenophine as it appears to have the least addition issues and side effects.
I'm in Barcelona, Catalonia. I have some reluctance of my Doctor to prescribe Buprenorphine at the beginning. Finally one year ago I began will pills, not very effective after few weeks. I'm now with a patch of 35 mg. Some days work some other not. No clear relationship with other factors. I have tried all meds except methadone.
I would like to add my thanks to you Shumba for your work on this forum. I did manage to get my neurologist to prescribe Temgesic but I am one of the unlucky ones and so far it hasn’t helped as much as I had hoped. For one thing I think I am like you and need a much higher dose than normal but the prescription I get is for 1000mcgs and no more. However I keep hopeful and am looking to try to get an iron infusion some time soon. Good luck with all your endeavours and if you have any further advice for me I would be grateful.
Thank you for your reply Shumba. At present I am taking one 400mcg tablet at 6.00 pm and one 400mcg together with one 200 mcg tablet at 11.p.m. However I still get a lot of break through during late afternoon and through the evening meaning I don’t get a lot of peace to sit or read or see T.V. At night as soon as I am in bed RLS will start x and then I am up and down or massaging like crazy. I’m so disappointed and despondent asI had pinned all my hopes on Temgesic and have worked really hard to persuaded the neurologist to prescribe it.. I am in the U.K and the times and doses are the suggestion of the neurologist, but maybe you have a different perspective or knowledge that might help me to respond in a better way to the tablets. Really welcome your advice Shumba. Thank you. Best Wishes Bedith6
Ask your neurologist how you go about getting a 10 day trail of buprenorphine.
f you word it that way he may be less scared.
If he says no ask for a low does mg patch -its will be a higher dose than you need ridiculous.I have heard of people cutting them [ don't tell the doctor that ]
Use my letters and put a blast out for anyone else on 2 mag Buprenorphine or patches and what they are called in the Uk and dosage.
Worse case you would need to add medical marijuana
Thank you for your reply Shumba. I am a little confused though as I thought Temgesic was buprenorphine, but that it came in lower doses, meaning you have to take more of the tablets to get the desired result. Is the Buprenorphineto you take a different drug to Temgesic.? Sorry to put you to the trouble of explaining to me but I need to be fully informed before I can ask my neurologist to change my prescription ( and of course I don’t know if he will he doesn’t seem very approachable) Best Wishes to you Shumba
Hi Shumbah, my doctor prescribed the Buprenophine with Oxycodone. Pharmacist refused to fill it due to my age, 74. (65 is the max age). I guess there is no hope for me after all. I have suffered from pain and RLS since I was in my 30's. I have undergone many surgeries and I have to go through major surgery once again. I have been praying that God give me a few pain free years. Anyway what to do?
Shimbah, I forgot to tell you the most important and that is how much I appreciate you. Thank you from all of us for helping so many. You are indeed awesome and an angel of mercy. God bless you
I just got a prescription for buprenorphine 2mg sublingual. When do you take this medication (what time of the day)? My doctor was rather vague about time frames.
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