Just saying I would recommend a 7 day trail to anyone interested in Buprenorphine you can start and stop with no issues .
I side stepped the 6 month wait at the Massachusetts General Hospital. I saw him as a private patient at his home $1000 cash , he did this as he knew I fly back to Australia on Saturday.
I was greeted at his home office door by a friendly face . We had spoke in the phone about 5 days before , I had not told him about Dr Glen Brooks at that stage .
When we got settled I filled Dr Winkleman in on my appointment with Dr Glen Brooks and the out come .
Dr Winkleman laughed said it is not very often I have a patient walk in and tell me they are better .
Dr Winkleman said that Dr Glen Brooks had done the right thing for me and that the evidence shows I should now be set for life .
I asked does he use Buprenorphine for his patients he said yes - However more often he uses methadone as Buprenorphine is more expensive .
He said Buprenorphine is a great medication and has some added benefits for those that can afford it .
Personally I think it is a shame that people are given the options and let them decide on the positives and negatives .Or even do as I did and do a 7 day trial that is how is it is if you are already on oxycodone.
Dr Winkleman said his patients on oxycodone he uses 3 doses in a 24 hour period . Much better result for the patient than one dose that I was one .
Dr Glen Brooks said he also uses Buprenorphine very successful to treat depression in the over 50s and anxiety , helps pain dose depended I guess .
We r picking up medication Buprenorphine tomorrow Dr Glen managed to calculate 4 months worth into a script that looks like one . I will let you know the cost .
Dr Glen Brooks did say I have all the hall mark symptoms of Lymes disease - I have been very sick this year .
I told Dr Winkleman he has kindly order a blood test this morning at the Massachusetts General he will get the test read by his friend the head of infectious Disease and email the results .
You can see both the doctors have been very helpful
I have to say my favourite was Dr Glen Brooks .
I feel I would not have been offered the Buprenorphine out of habit from Dr Winkleman he would have taken my oxycodone from one dose to 3 plus the sleeps I was on.
I am really happy with how things have worked out.
I now have connections with both doctors should I need to contact either of them. Both doctors have typed letters to my doctor in Australia.
Really I now have 2 opinions for my doctors in Australia .
I hope I have covered everything , I sincerely hope this helps someone else .
God Bless America I could not have done it without you
All the best 😀 everyone
Written by
Shumbah
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So wonderful to hear all this. So glad you have it all sorted out. Guess making the flight was totally worth it. This makes me happy and gives me belief for all of us.
One problem solved ✅ now I have to see if the Lyme disease is a problem for me - you cannot get treatment in Australia for Lyme as thy don’t believe we have it in Australia. And with my whole heart I hope it’s not a club I have to join .
But the pain is horrific I would have survived without the Botox I have been having for the pain in my legs and shoulders
I've just read your update. You've obviously done the best thing to help yourself and these 2 doctors you mention really show that they are good doctors as they didn't get annoyed when you told them about their colleague.
They are shining examples to their colleagues!
Lindy14,
That's really good to hear I wish you well for a pain free future.
Shumbah, how are things going with the buprenorphine?
I see that it also used for depression which would be a great plus. I am on methadone - great for symptoms and sleep, but I fear it could be causing depression.
Truly my legs and mental health are amazing I feel 20 years younger .
No depression, which was caused by the oxycodone.
My dosage is meant to be 2 mg sublingual. I break it in half down to 1 mgtgen I break the 1 mg into 3 pieces most nights I take 1 to 2 of those pieces so less than 1 mg . So in total 3 tablets last me a week it simply incredible.
I don’t feel like I have RSL but I know I do 😆 I don’t feel like I’m on drugs but glad I am 😆
Buprenorphine has a shorter half life then methadone
Buprenorphine is very safe and you cannot Overdose on it
Thank you so, so much for your quick reply. It answers all my questions. I have been reading your past posts about sprawling in bed like a kid!
That is how I felt when I first started methadone, for quite a while, but now I wake up with crushing depression, like extreme dread. Awful!
Now I have new path to explore. When you first posted about the good doctor in New York I was very interested, but I had not noticed/realized that buprenorphine was also good for depression. Gosh, gosh, gosh.
I hate piling drug on drug, nobody knows what they do, so taking one instead of two seems a blessing worth paying for.
I shall go in search of my own Tiny Little Crumb. TLC, how apt.
If you pay through the nose and get your life back it is worth it. If you pay through the nose and don't have a life at all.........That is what is happening to so many of us.
Modern medicine looks quite mad sometimes, but still gets paid and paid and paid, whether it cures you or kills you.
Your NY doctor was an anaesthetist, I think?
I am going to print out all of your information and take it to my well-paid provider.
He still is anaesthetic 2 days a week it would be worth a visit , coming back into Australia already on the medication made it easier to get prescribed.
Dear Shumbah, I have followed your sufferings and subsequent help with great interest. I hope you are still feeling all the benefits of the buprenorphine. Dr. Buchfuhrer has suggested that I should try this. At present I am taking 5 mg. oxycodone in the morning and 10 mg. in the evening but it does not give complete cover and I have break-through RLS. I have been on this for about eight months and have noticed progressive depression (not severe but wakening each day with quite black thoughts which are hard to shake off).
Could I ask you did you suffer depression whilst on oxycodone and how was your sleep.
Could I also ask the exact dose you are taking and when you take it. I would like to go to my GP armed with as much evidence as possible.
I note that you also stated you had brain fog which is something I suffer. Did your new treatment clear this and do you feel sleepy during the day.
I hope this is not too much to ask of you. I know that Parminter is thinking of going down this tract as well so it would be great if you could help us.
Did you see my long winded epic I did that so you can print if for your doctor ?
On the oxy I got 4 hours sleep per night , exhausted in the day and suicidal all day every day and my memory was seriously gone and when they wanted to increase back up to 20 mg I knew I was not on a winner .
I had a sleep study done at john Hopkins institute in may 2019 I wake 48 times an hour from my RSL that’s nearly every minute .
The buprerphine is perfect for me
I take my little wafer at night no break through I sleep all night , I dream all night now that’s a first !
Memory is crystal clear I could go back into business if I wished . Rsl so debilitating they often give up work
High quality opioids for RSL patients have such an improvement they can return to work and that has such a big ripple effect for all around them . You are not just helping the patient but the whole family ..
I truly feel like I don’t have Rsl now although I know I do . I take the buprenorphine at night nothing else is needed and I’m
Asleep with in minutes .
Give it a go I was terrified totally unnecessary so .
If you get your script message me and will help you further 🙂
I am a woman who has been very successful and run 5 of my own companies as a single mother of 5 I sold my companies an retired at 49 , 7 years ago
I spend my time travelling the world with my now very successful husband who sold up and retired at 48 he is now 53
We spend all out time travelling the globe which is absolutely torturous with RSL . Our financial position has allowed us to research and find and meet some of the best Professors and doctors for RSL
Last year we spent just under $50,000 on this journey and finally hit gold in Dr Glen Brooks and Professor Winkleman I spent money on others but they were stuck on antiquated medications and thinking .
You name it I’ve tried it !
My last regime was
15 mg slow release oxy at night plus 10 mg endone which is fast acting earlier in the day if out for dinner or movies etc plus stillnox
Result was
Only got 4 hours sleep per night .
I thought about suicide all day everyday .
My memory was as if I had Alzheimer’, I couldn’t read , write as I could not spell .
Life gave me no pleasure at all , I could not enjoy conversation as I could not remember what was said . I became very quite and withdrawn and was scared to do anything I hated the thought of travel or socialising the opposite of everything I have ever been . My children were very concerned as was my husband .RSL and meds consumed every second of my life as it does for all who are not on medication that works .
Medication for RSL should be like taking a blood pressure pill should . Take it and forget about it for 24 hours !
A lot of people on this website are given a medication it does not work properly then the doctor adds another bandaid more drugs and it goes on .
The day before my trip to see Dr brooks in NYC the Dr in Australia wanted to add amitriptyline to my cocktail let’s keep adding in my eyes this is criminal .
Dr Glen Brooks reached across the table with 2 hands placed them on mine and said LETS MAKE YOU WELL AGAIN ! That is how it should be don’t just be a prescriber CARE think about the problem I was problem solving all day everyday in my companies . If you don’t know don’t send them to neurologist who do not know either and trust me can do no harm . If the Success runs are not on the board don’t play with people’s lives .
The internet has saved my life and having the funds to follow through with my research .
Doctors can contact Dr Glen Brooks or Dr Winkleman other doctors and clarify the use of buprenorphine .
For me it was a clean swap no down time .
Prescribed was 2 mg sublingual wafer under the tongue at bedtime
I take half a dose 1 mg
Slept like a baby I did not move my husband could not believe it
It has a 24 half life now I take a litttle less than 1 mg
Which means my script gives me double the quantity.
Most people need 2 mg
Professor Winkleman said it never needs increasing it is one of the safest drugs and the doctors should be pleased if the RSL patients are on it because you cannot become addicted nor overdose or take opioids on it as it stops them from working .
I am back to my old self on every level I take my 1 mg when I’m in bed and ready to sleep no break through , just like taking a blood pressure tablet set and forget . I take NO OTHER MEDS just the buprenorphine
Ps I’m asleep in minutes
Truly hoping more Doctors will trail this I was on a 10 day trail with Dr Glen Brooks and I have not looked back .
All the best please let me me know how you go wishing you success , peace and good health 🙂
I, for one, cannot afford to travel to doctors, even within the states. My husband and I are on Medicare. On top of that, the cost of buprenorphine is not covered by my insurance and I think it’s roughy $150/mo. I am thrilled for you and that you have the financial means to find relief for your RLS.
Dear Shumbah, Thank you so much for your detailed replies. I really appreciate the time and care you have taken to help me.
I am sorry for the delay in replying. to-day I was at hospital to have both my eyes injected for macular degeneration. I get these about every six weeks and cannot really use the computer for 24 hours until my sight gets over the anaesthetic, etc. I will be in touch again tomorrow when I can see what I am doing once again!
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Buprenorphine and constipation.
