Buprenorphine Update and new story - Restless Legs Syn...

Restless Legs Syndrome
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Buprenorphine Update and new story

Shumbah
Shumbah

Hi everyone

I am prompted to send you an update after receiving an email from a member .

Yes buprenorphine still works perfectly

100 percent peaceful

No break through , memory crystal clear, fabulous mood , sleep like a baby, cuddle up in my husbands arms until I have a hot flush LOL

I now know of a couple of other members who have also tried buprenophine with good results and one member who has an appointment in the USA next week hoping for a script so lets say a little pray for Lana

The member I just received an email from is going to post her story and updates so watch out for her Good News Story

:}

48 Replies
oldestnewest

I have had very good results with narcotics also but this is the first I've heard of buprenophine. Is it something you can take daily for decades?

Shumbah
Shumbah
in reply to intermk

Hi Intermk

Absolutely !

Professor John Winkleman says the evidence shows you will never augment nor will the dose need increasing buprenorphine.

It’s an extremely safe non addictive opioid it hangs onto fewer receptors in the brain and has a lot of benefits sleep ,pain relief, improved memory ,elevated mood .NO break through symptoms.

Feeling like I don’t have RLS .

Only side effect constipation easily fixed .

Let me know if you decide try and what country you are in .

All the best

Shumbah🙂

smilingjane
smilingjane
in reply to Shumbah

Hi Shumbah

This is really interesting.

I started 30mls per 24 hours of Oxycodone just over a year ago.

After developing augmentation from previous drugs this was a wonderfull cure.

Only thing is that although I can lie still in bed for the first time in years, I dont sleep much. I have chronic fatigue probs because of that.

Do you think I would fare better on Buprenorphine? What dose do you take? and is it sustained release? Not sure how your RL affected you, but I had it 24/7 and in my arms too.

Do you take a nighttime dose or daytime too?

Many thanks for reading this

Jane x

Shumbah
Shumbah
in reply to smilingjane

Hi Jane

I suffered from shingles 12 months ago and that sent the shingles into over drive

I had full body and could only sleep for 45 minutes a night the rest of the 24 hours I had to stand .

I think if you can get buprenorphine it is a straight switch no wash out time. Work in minutes as it is sublingual although Erica on this site has it in suppository form .

I take it at night it last 24 hours a long half life .

What country do you live apologies if I have asked that before ?

smilingjane
smilingjane
in reply to Shumbah

Hi Shimbah

Thanks for your response.

I am in the UK, (Newcastle).

So you had full body and 24/7. Your the first person I have spoke with who had the same as me, (I think).

You have yo have been through it to truly understand .

So your dose taken at night, does that last all day too?

Jane 🤔

Shumbah
Shumbah
in reply to smilingjane

Absolutely my love .

I feel like I don’t have Rls

I have no break through symptoms at all

It must be pure buprenorphine not a mixture Dr Glen Brooks emphasised the importance .

Before the buprenorphine I could not sit on the lounge in the day for more than a minute or two the minute I started to relax it would start and I would have to stand . I was so close to jumping to my death from my veranda , sleep deprived on cocktails of drugs .

The only time I could sit was in a hot bath or with continuous heat packs Burning my legs but no sleep .

I could not Even sit through dinner in a restaurant without kicking , fidgeting continually getting up and walking to the bathroom .

God it is vile .

That is why now I have found something that has offered total relief I am trying to make contact with some of the leaders in the field of RLS and there are not many Doctors in the world and certainly not one I had found in me in Australia and not one response from Professors I have emailed in Australia.

If Dr Glen Brooks in the NYC had not responded to my very first email to him I would NOT be here today ,

I would kiss his feet even at the risk of catching coronavirus to thank that man GOD bless him .

smilingjane
smilingjane
in reply to Shumbah

Yes definitely GOD BLESS HIM and YOU TOO for putting yourself out there to spread the word.

Thank you so much and for the many sufferers out there.

I am a little hesitant to change just in case here in the UK the prescribed Buprenorphine isn't the pure one.

I have a great GP though. I am sure he may let me try and then if dosnt work go back on Oxy.

I was also close to suicide. Just over a year ago I presented at A &E

After many years of repeat visits to doc and Neuro different pills.

Augmentation started.

It was tortuous hell.

Out of it now. Thank you to my doctor with God like status!!!But so many people out there suffering a nd probs mostly women.

I wonder why RL isn't more widely talked about it isnt that rare!?

Shumbah
Shumbah
in reply to smilingjane

Leave it with me .

I will get the correct wording from my notes so you get it right

Don’t be scared it’s a straight switch no down time which is awesome .

Ps I was terrified so I understand

Chat soon 🙂

smilingjane
smilingjane
in reply to Shumbah

Thank you so much amazing person !!

Shumbah
Shumbah
in reply to smilingjane

Back to bed and sleep for this possum 🙂

smilingjane
smilingjane
in reply to Shumbah

possum?

Shumbah
Shumbah
in reply to smilingjane

It’s n Australian animal

Dame Edna uses the word a lot a bit of Aussie slang .

Possums are nocturnal and sleep

A lot like me now hooray 😃

smilingjane
smilingjane
in reply to Shumbah

Nothing in the world like it.

Night night x

smilingjane
smilingjane
in reply to Shumbah

Ah yes of course! 🌛

smilingjane
smilingjane
in reply to Shumbah

Hi again Shumbah

Just read your story.

Absolutely amazing. Travelling around the world to find an answer.

I thought I was lucky to get Oxy in the current climate. And it works!

For the first time in years I dont have to dive out of bed when I wake.

Thing is though only sleep in 2 or so hour busts.

I have always been a poor sleeper.

I know opiods can mess with your sleep.

Wondering why Buprenorphine dosnt with you?

Which could try are you based on?

Jane

Shumbah
Shumbah
in reply to smilingjane

Sorry can you rephrase I don’t understand?

smilingjane
smilingjane
in reply to Shumbah

Oops sorry! Which country are you based in?

Shumbah
Shumbah
in reply to smilingjane

Aussie Aussie Aussie

Australia 🙂

Shumbah
Shumbah
in reply to smilingjane

If you message me your email I am happy to send people my more in-depth document I have done to plead my case with the Australian government

smilingjane
smilingjane
in reply to Shumbah

Hi Shumbah

Thank you I would really appreciate that.

Out of interest, which type of RL did/do you have?

Mine is the crawling under the skin type. I dont get pain in legs. Not from that a way.

Also does the one dose cover you for 24 hours. Do you ever get some RL during the day?

Your email address has been deleted. Please private message your email address, to Shumbah. (Kaarina)

Shumbah
Shumbah
in reply to smilingjane

On the buprenorphine I get Zero symptoms day or night

The one dose I take at night lasts 24 hours .

Mine RLS was just the need to move until I got shingles feb 2019 bang I had the the full deal every kind you could imagine pins and needle , crawling , even felt like arts of my stomach were moving by themselves . Unbelievable-screaming leg pain I had Botox for that it used to start at 1pm. Tapping sensations in my shoulders .

I need to move attach from my head to my toes and fingers no

Part of me was spared .

I was at the doctors 3 times a week in desperation and even in hospital as you read before I flew to NYC

I was being tortured by my own body .

I Will send you me letter tomorrow or the next day .I am on the hunt for a shingles vaccine there is a shortage I have had to wait for 12 months post episode to have the vaccine.

I wish I had known about the vaccine before I got it shingles .

If you have had chicken pox as a child and are over 50

I 100 percent recommend having the vaccine because shingles changed my life and not for the best .

smilingjane
smilingjane
in reply to Shumbah

I will take that on bourd

Thank you ⚘

Shumbah
Shumbah
in reply to smilingjane

Buprenorphine hangs onto a lot LESS receptors in the brain and that is a real bonus .

Professor Winkleman said to me that I am lucky I obviously don’t have insomnia .

I only have RLS if I had both I would need to take Normison or stillnox .

The only thing I ever add occasionally is medical marijuana spray .

If I am in severe pain from over doing things or if I my brain is busy and I can’t sleep for it ticking . But this is not often but it works a treat when I need it . I hate the taste but love now it works and so quickly .

The other thing I have found that really helps with pain at the end of the day and does offer a level of relaxing comfort similar to hoping in a hot bath is an electric blanket .

I can’t believed I lived nearly 13 years in the UK during the 70 -80 s in a freezing cold non heated attic and never thought about buying an electric blanket .

I just don’t understand your last question ?

smilingjane
smilingjane
in reply to Shumbah

Electric blankets are great aren't they 😊

intermk
intermk
in reply to Shumbah

Well I can't decide to try because I live in the U.S. and getting any narcotic Rx here is extremely difficult. Even when I give doctors the research they just laugh at me and say there's "no way I'll write a Rx for {name of pain med] for RLS." But I'd like to know more about the doctor you mentioned. Does he have published data out there regarding this medicine that I could access? I will be going into a pain clinic soon and I'd like to be armed with the latest research findings on narcotics and RLS. Maybe I can convince them to write me a Rx. thanks

LotteM
LotteM
in reply to intermk

Intermk, I have te same question re published results on buprenorphine for RLS. I quickly searched a few days ago (Web of Science) but couldn't find anything obvious. The references that are mentioned in the YouTube / rls.org webinar by Dr Earley are mostly about oxycodon (/naloxon, i.e. Targinact).

I have the same issue, I eould like to go to the consultation with my doctor armed with published scientific knowledge.

TheDoDahMan
TheDoDahMan
in reply to LotteM

Google and then print out "The Appropriate Use of Opiates in the Treatment of Refractory Restless Legs Syndrome" (Mayo Clinic; Silber, Buchfuhrer, et al; 2017-18) to bring to your physician if s(he) is not well-acquainted with modern treatment for this scourge.

LotteM
LotteM
in reply to TheDoDahMan

Thanks dodahman. I am familiar with the paper. Unfortunately, it doesn't discuss or even mention buprenorphine. Too new in its use for RLS, I suspect. At the time the review was written, the most used and 'favoured' opioids were oxycodon and methadon.

Shumbah
Shumbah
in reply to intermk

Hi intermk

I get mine from Dr Glen Brooks NYC

He is more than happy to help people from our site and has helped another other lady that I know from our group .

I believe he mailed her a script but said he would eventually like to see .

She is now trying has an appointment next week nearer to home

I have my fingers crossed for her.

In the USA you must find someone who has done the suboxone waiver so they can prescribe . It takes the a doctor 8 hours and it’s free then they can prescribe .

Are you far from NYC ?

intermk
intermk
in reply to Shumbah

I'm about a 4 hour flight from NYC but I'd go almost anywhere to find a doc that knew what he/she needed to do to help severe RLS sufferers.

It's really heartening to hear of your continung success with buprenorphine.

I do read of folks on this forum saying something's worked for them, then a while later, it's something else, then something else,

I think, why something else if the first thing was OK?

Obviously, they may neglect to say it, but the first thing didn't work.

But I think you've now shown that buprenorphine does work for you.

intermk
intermk
in reply to Manerva

I have learned to believe over the years than RLS has a mind of its own and can figure out how to overcome whatever you throw at the disease/syndrome. I'm not sure that there is anything out there, including narcotics, that will work long term. i.e. the rest of a RLS sufferers lifetime. I do know people that have been on narcotic pain med for various reasons other than RLS and for up to 32 years without having to increase the dose much and without something like augmentation happening. Also, medical experts have written that one cannot become addicted to narcotic pain medicine if you use it only for pain, vice for recreation purposes.

Manerva
Manerva
in reply to intermk

I'm sure you're right.

It's the claims about the herbal remedies that work for completely unrelated conditions so it must work for RLS, pseudo-scientific devices, magnetic wotsits, things read in a blog, seen in an ad in an extremist alternative publication, apparent scams and claims about bars of soap etc I refer to.

That leave the less discerning, more vulnerable RLS sufferer believing it's worth wasting their money on and emotional investment.

Which when challenged the claimers get defensive or even abusive and fail to inform readers that actually, they were wrong and it didn't work as they claimed.

Sorry, a mini-rant.

Tamaroy
Tamaroy
in reply to Manerva

Would like to try it if I can get it here in UK.

Shumbah
Shumbah
in reply to Tamaroy

Hi Tamara I have emailed Proffesor David Nutt I will let you know of his reply alternatively send me your email and i will copy you into one I have sent another member in the UK about trying THE OAD CLINIC

sorry for my late reply I have been very sick with chronic Asthma fingers crossed I'm on the mend .

Tamaroy
Tamaroy
in reply to Shumbah

Your positivity is lovely thank you, I take 3-4 Clonazepam 500 micgram every night, have tried cutting down legs are then hell, am at the mo trying a sedative antihistamine called Promethazine hydrochloride 25 mg have been told to up it to 2, but no legs don’t like it, I am a sufferer of allergies, even found a new one the other day soft eggs, hard boiled is okay. I have had this problem for going on 41 yrs, Thank goodness I have a patient hubby for support.

Sorry I will not give out private details on site

Shumbah
Shumbah
in reply to Tamaroy

That’s all good if you want any info emailed

You can send via the private message system .

I Have spent the last 2 days responding to private messages and emails

I’m cruisy either way . I have just caught up so that is a good feeling 😀

Can we get it here in the UK?

Shumbah
Shumbah
in reply to Tamaroy

I live in Australia

However it is on my to do list to email Professor David Nutt neuropsychophamacologist in the Uk

and I will ask him and hope for a response .

I has responded to other emails so fingers crossed he can point me in the right direction as to how people in the UK can assess buprenorphine.

Dr Nutt is currently looking for 20000 people to take part in a clinical trail in the UK for the use of medical marijuana.

If you are interested just google it and it will pop up

I will let you know what I can find out

Crossing my fingers I am working on a few professors in America as well .

If I can get a couple of good doctors prescribing in other countries then we can correlate our own data after all there are nearly 14000 of us on this site.

Hopefully we can make a difference

🙂

What dose are you using?

erika13
erika13
in reply to davidadill

I’ve also just started taking it (successfully!) and am taking 0.2 mg or 0.15 mg a night. I’m in japan though and I take it (insert) as a suppository. I’m sure Shumbah will also reply, but from what I understand she is taking 1 mg or so a night as a sublingual tablet, which dissolves.

Shumbah
Shumbah
in reply to davidadill

Hi Davidadill sorry for my Tardy reply I have been laid low with severe asthma I am currently weaning if prednisone.

I take 1mg sublingual the prescribed dose was 2mg.

I break 2mg down to 8 tiny pieces this last me nearly 3 nights good value in my book .

but don't tell the doctors you take less than 2mg as it will last you soo much longer my honesty has worked against me.

sorry if i have asked you this before I answer a lot of private emails and messages where do you live ?

and have you managed to access Buprenorphine ?

Kind regards Shumbah

Shumbah
Shumbah
in reply to davidadill

I Just took a peak I see you are in the USA let me know how you go please.

Shumbah, Can you tell me more about how to get in touch with Dr Glen Brooks in New York City, NY? When I google that name I get someone at a Ketamine Infusion clinic. Is that the guy? BTW, ketamine infusion therapy is something I've been trying to get because it's supposed to relieve chronic pain and depression for up to 3 months.

erika13
erika13
in reply to intermk

Hi Intermk,

I’m not sure if Shumbah clarified this already but

Yes, is the Dr. Brooks. He works at that Ketamine clinic.

I’m now on day 7 of Buprenophine.. it’s been working really well. I get it from my neurologist here in japan.

Good luck!

intermk
intermk
in reply to erika13

Erika, No I have not heard clarification from Shumbah so I thank you for doing so. I will write to Dr. Brooks and Dr. Mark J. Buchfuhrer in Downey, CA USA. The latter heads up an RLS support group out there. I just have not been able to find either a primary care doc or neurologist in my state of Coloraodo USA that will write me a Rx for anything. They all think that RLS is not a real problem or so it seems.

Shumbah, good to hear you are experiencing relief with Buprenorphine. I am in Australia. How do I message you my email to receive the in-depth info you prepared for the Oz Gov?

Kaarina
KaarinaAdministrator
in reply to RSL-RIP

Hi there! You can private message Shumbah. Go to the two speech bubbles/Chat to do this.

Hope that helps. :)

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