Started Buprenorphine 😴

[Shumbah]

Hello from NYC

So far it has been really worth the long hall flight

I have seen an amazing doctor in NYC

I am seeing him again on Tuesday - I will seek his permission before popping his name up.

He was lovely older man , hugged me when I left gave me his personal Mobile / cell number

He reached out during our session held my hand and said let’s GET YOU WELL !

No one has said that to me before .

He thinks my other symptoms are Lyme and has referred me to Dr Steven Phillips MD in Connecticut .

He gave me a script for buprenorphine

So far very interesting

I did a straight switch from 15 oxycodone slow acting and up to 3 x 5 mg Endone quick release daily and 10mg stillnox

NO withdrawals

It is a 2 mg sublingual wafer I broke it into 8 crumbs because I am a scaredy-cat. I took the first one over the period of 24 hours

I did not go to bed until after 3 am as I was taking notes sitting in a dry hotel bath so I would not wake my husband . That caused some serious pain ( just had to get it done for my doctors )

admitting I took a stillnox out of habit at 3.30AM I SHOULD NOT HAVE

I slept until 10.45 am ,when I woke up I was very relaxed my body was not contracted as it would normally be .

Day 2 broke into crumbs took less than 1 GRAM over 24 hour period my body was so relaxed in bed lovely floppy relaxed legs . I found myself sleeping as I did in my early 20s arms sprawled out , I looked like a baby in a cot and felt that way too. Took NO sleepers only other thing I am taking now is CBD oil capsules I bought here in NYC

I hope it continues- I still have appointment next week in Boston with Dr J Winkleman

🙂

[Hidden]

Sounds wonderful. Good to read this.

[Joolsg]

How wonderful to meet such a caring doctor.

I’m crossing everything and hope you have many more peaceful nights.

[Shumbah in reply to Joolsg]

Thanks Joolsg

It’s hard because we all try not to get excited when get some relief , but on the other hand we can’t help but get excited .

How funny for an RSL suffer actually looking forward to going to bed at night 😊

[Joolsg in reply to Shumbah]

🤞😄😄

[MATTIELUKE in reply to Shumbah]

Really!!!!

[Parminter]

Shumbah, which medication was a sublingual wafer?

Endone is fast-acting oxycodone - did he say why he preferred this form over the other?

And at what times do you take the Endone?

And did he explain the buprenorphine?

I am asking for detail because this is the sort of specific information that I would take to my own doctor.

It is good to be reminded that there are wonderful doctors out there. It does not surprise me that he was of the Old Guard. Good for both of you.

And please keep us apprised of Doctor Winkelman's opinions.

[Shumbah in reply to Parminter]

Hi lovely

Keeping Brief not well with the other issue

Previous meds

15 mg oxycodone slow at night

10 stillnox

5 endone quick acting I used late on flights as needed , , over 24 hr flight used 3 times spaced out as needed and the 15 mg slow on the longest part of the flight NO more that 30 mg in 24 hours

Current medication

Dosage is meant to be start on half a wafer at night build up to whole one .

I am to scared as I have had respiratory depression before so doing slowly through the day has a long half life I think 24/ 36 hours ( don’t quote me )

Night 3

Last night my legs did not move , I should have had more during the evening build up , I did not get much sleep because I am really stressed about Lyme but rested beautifully .

I will keep you in the loop re meds and Dr Winkleman

2 mg Buprenorphine

it’s hand written on trail bottle so dose I will check on Tuesday when I get more meds

He says he works on Different receptors

He is an euthanasist in theatre 2 days a week still and owns a ketamine clinic which is no good for this condition and does not work as well for over 50 brain due to not being as plasticity

He said he it is also really help with the anxiety , sleep , depression .

Sorry if ever repeat myself , where r u located again ?

All the best 🙂

[Parminter in reply to Shumbah]

Thank you so much, Shumbah.

I take methadone 6mg once per day. It has worked very well thus far, but the very long half-life (which can be up to 60 hours in the elderly) could prove problematic. So I have been thinking about the possibility of switching to opioids with a short half-life.

Endone might be an option. I shall take your information to my doctor.

We have not considered an opioid antagonist so far, but that is worth a discussion. Your comments are interesting.

I take loprazolam for sleep, but that, too, is long-acting - Zolpidem would be more appropriate.

I live in Southern Africa, and I work with my GP to solve the RLS problem. Our GPs are very widely-trained, and not afraid to take on conditions that might only be seen by specialists elsewhere. Africa is Africa.

I really look forward to hearing about your meeting with Doctor Winkelman. Enjoy meeting one of the giants of RLS.

[Parminter]

I forgot to ask the buprenorphine dose - could we have that, too?

[Tennwalker1]

Shumbah, so happy for you. I love hearing these kind of stories. We've all been there so we know the pain you've had and the relief you're feeling. Hooray! Best of luck to you. God bless and keep us posted...

[hscarangella]

If he allows it, please give me his name as I live in New Jersey and might want to see him. Thank you.

[Sara_2611]

He sounds so caring -Ive never heard of a doctor who gives his/her personal mobile no -thats a first on me