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Restless Legs Syndrome

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Buprenorphine 12 month update and the glitch

Shumbah profile image
27 Replies

Hi Everyone

As many of you know 12 months I left my hospital bed in Brisbane Australia and flew to New York I was on the edge of life from this disgusting Wretched Disease.

I’d lost 15 kilos , my blood pressure was not under control, and I was in agony .

Abuse is how I would describe the treatment I received from the Doctor during my 7 day hospital stay.

I checked my self out at 10 pm at night.

48 hours later we were in NYC.

Dr Glen Brooks had responded personally to

my email regarding the use of Ketamin for RKS.

He said that Buprenorphine is what he uses for RLSand he does not prescribe anything else.

Within 3 minutes of entering his room he reached across the desk and wrapped his hands around mine looked me in the eyes and with his his soft compassionate voice he said let’s make you well.

A 10 day trial on low dose buprenorphine was to commence. It sounds silly to be offered a lifeline and yet to be terrified.

That night there was to be a straight switch from 20 mg slow release oxycodone, 2 x daily doses of endone and stillnox .

I was to scared to take the 2mg dose,so I cut it in half and then cut that half into the almost pinheaded size 6 crumbs.

I popped this tiny little sublingual crumb under my tongue then 15 minutes later another and so one until I reached the desired effect.

That night I did not move nor did I snore my husband kept checking to see if I was breathing

I was dead still and quite.

I woke up in the same position I was when I lay down.

Unbelievably an absolute miracle!

My dose is 2 mg usually I take 1 mg which is half a tablet however if I have exerted or exercised

I increase to 2 mg for a few days.

During this 12 months my blood pressure has returned to normal my GP has stopped my blood pressure medication after 16 years of requiring it. He said that is a first for him.

The Glitch

I use medical marijuana for varies aches and pains not daily however sometimes it might be daily for a couple of weeks mostly PRN.

Brand name NanaBis worked really well however my doctor switched it to a new brand Spectrum.

I started having some RLS symptoms around 3 pm I thought oh no here we go 😩I was really worried I though it might be in my head .

I was not sleeping properly my fingers kept waking me up my arms would hit out my legs were irritable.

Eventually every night and I was adding extra little crumbs to my 1mg up at regular dose of

2mg although this is still of course I was worried that it was creeping up and where would it end.

My 23 yr old son who also suffers from RLS ( 6 member of my family suffer ) said Mum I think it is the new medical marijuana. He said it will take 2 weeks to clear out of my system.

Thank goodness he was spot on 😀.

I ceased using the MM it did take 2 weeks for me to return to my normal blissful state I have become accustomed

I am now back on Img Buprenorphine

I sleep like a baby and I love it.

Although my doctor prescribes my dose at

2mg in response to Dr Glen Brooks email so I can exercise.

Also when I was in hospital for surgery in June the cutting of the dose from 2mg to 1mg did there heads in.

If the nursing staff did not cut it exactly in half it would not work properly as one side would be smaller.

So my prescribed dose is still 2 mg because mostly I take 1mg I feel safe knowing I always have some extra in the draw.

Medical marijuana is very new in Australia and the UK be mindful that not all doctors understand the plants varieties and that some may indeed as do some medications in fact do exacerbate RLS.

I know this will sound strange but it’s true.

The longer I am on buprenorphine the better I feel. I keep saying to my husband and GP that not only has my memory returned it is like a new improved version.

In fact I said to my sister early tonight that I actually feel as if my brain is getting younger and healthier.

I am doing things I have not done for many many years.

I am so very grateful to Dr Glen Brooks for answering my cry for help from across the other side of the world .

1000 percent I would not be here today had he not .

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Shumbah profile image
Shumbah
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27 Replies
smilingjane profile image
smilingjane

Thank you for sharing this Shumbah

truly amazing 🏋️‍♀️

2mg in response to Dr Glen Brooks email so I can exercise

Just wondering what you mean by this sentence?

😊

Shumbah profile image
Shumbah in reply tosmilingjane

Buprenorphine is highly regulated in Australia and I could only pick up 14 2mg tablets per month then cut them in half . If I dropped one down the sink I was in strife. Also I could not exercise as Img would not be enough.

So I emailed Dr Brooks and he did an email for me to give the doctors to get an increase on the grounds of exercise. It is so nice to have piece of mind that I am covered . I feel much safer now having enough to cover me.

Finally last month for the first time instead of a 28 day pick up the pharmacist gave me a 3 month supply mainly because it has been so complex for him he was sick of seeing me 😆

smilingjane profile image
smilingjane in reply toShumbah

Thank you for explaining.

It is not only the wonderfull consultants you sought but also yourself and your steely determination that saved your life.

Congratulation on all you have done not just for yourself but for all of those others in need that you have gone out of your way to reach out to with desperately needed positive options when there was so little.

Thank you

x

Dakota13 profile image
Dakota13

I’m so glad that you are doing so well! I’m going to give this info to my doctor. Thank you so much for sharing ❤️

Dakota

rls-insomniac profile image
rls-insomniac

Hi Shumbah

I'm going to see if my consultant will prescribe buprenorphine for me. I'm not holding out much hope as I live in the UK. My GP refused point blank to prescribe it even though I asked for Temgesic. I still suffer with afternoon/evening symptoms. I wondered whether your afternoon/evening symptoms have also gone with the buprenorphine.

I'm so pleased for you that you've got your life back. It's always great to hear of success stories.

All the best. xx

Shumbah profile image
Shumbah in reply torls-insomniac

I have zero break thru

24 hour coverage.

Truly putting it out there for you have you printed off the printed off Palimino and puzzlers posts both in the UK and to my knowledge the first peeps there on temgesic for RLS and both doing well

Putting it out there for you X

rls-insomniac profile image
rls-insomniac in reply toShumbah

Thank you. Yes I've been in touch with Puzzler1 who has been an absolute star. I'm going to draft an email to my consultant with all the information I've got. I hope you don't mind if I mention your success with it. X

Shumbah profile image
Shumbah in reply torls-insomniac

Absolutely use it I working with people across the globe helping them to access buprenorphine in its varies forms available.

I am writing a book and I am hoping to have a doctor explaining buprenorphine it’s safety in the use for RLS

rls-insomniac profile image
rls-insomniac in reply toShumbah

Thank you Shumbah. I much appreciate it. Good luck with your book. It'll be so beneficial to sufferers especially as most of us just don't know where to turn when trying to get help.

I wish you all the best. E. xx

Suberino profile image
Suberino in reply torls-insomniac

Hello rls-insomniac. Would you be happy to let us know how you get on? Sue

rls-insomniac profile image
rls-insomniac in reply toSuberino

Hi Suberino

Once I have any news, good or bad, I'll put out a posting.

All the best. X

Suberino profile image
Suberino in reply torls-insomniac

Thank you.

in reply torls-insomniac

I was thinking this too, rls-i. I hold out little hope getting it here. I'm a 24/7 crazy legger (and arms now too). The neurologist I saw (pretty useless) gave a bunch of suggestions, but not this drug, for sure. I'd love to know if you get any further and they allow you to have it. Fingers crossed for you.

And thank you, Shumbah, for all this info. :)

Palamino profile image
Palamino

Hi Shumbah so glad your doing well . I'm getting there I think I need to up my dose though I'm only on the 200mcg I take 2 one morn one eve but stil havin symptoms at times I had 3 the other day and slept well . It's just so hard to contact your doctor at the moment because of covid . He wont give me an email address to send him info on the drug so i can take more . But it defo works and I'm in UK so some doctors will prescribe even if u have to get hysterical which i did ....he s known me for years and when I get to that stage he knows I need what I'm asking for .

Shumbah profile image
Shumbah in reply toPalamino

Hi palomino Yes your dose is really low it sounds like it is going to be really positive for you once you increase the dose.

I am so pleased for you 😃

Shame we have to be in the ledge to be heard and get help.

Palamino profile image
Palamino in reply toShumbah

Hi how s u ? I've upped my dose to 400mcg morn and same in eve and been symptom free since .

58anniem profile image
58anniem

This is amazing to read and you have given me a positive way to start my day, thank you!

You sound very informed about the Temgesic.

I am in the UK & have tried all the usual over the years and like most, nothing works for long. With fybro, sleep apnea & ME I can’t excercise that much and hence about 3st overweight. been on two blood pressure tabs for 10years. RLS was through the roof but I have weaned off all meds now apart from BP x2 and HRT and 30mg dihydrocodine which I take only one in the evening and I try to not have it every night which I can do sometimes and so I know on that dose I’m not addicted. However, I wake up after two hours and am like a washing machine in bed and often only get about 4 hrs if I am lucky. Most nights I’m wide awake with a throbbing exhausted body and a racing mind. Maybe once every few months I sleep longer than 4hours straight.

My question

Would asking my unhelpful uninterested Dr to change from Dihydrocodine to Temgesic be a side step (I am frightened of not getting it again if Temgesic didn’t work for me)... If I don’t sleep properly on one opioid unless I have a short holiday for it, would a different one work?

Shumbah profile image
Shumbah in reply to58anniem

I’m hear what you are saying

Surely If you went on a trail and it did not work they would put you back on your medication.

The only thing I can say is that Buprenorphine certainly worked differently than oxycodene for me HOWEVER my concern for you is that Temgesic is micro dose and will it be enough.

It would be great if your Gp would be open to trying Temgesic on a trail basis to see if it works better than your current meds.

I hope that helps 😊

58anniem profile image
58anniem in reply toShumbah

Thank you so much, I’ll let you know. So so glad it was worked so well for you x

It’s so interesting that the change in strain of mm made such a difference. Did you revert to the original strain or discontinue cannabis completely?

I have posted this many times - there is a very interesting video on YouTube by an Israeli expert in medical marijuana which shows how strain specific mm can be (albeit in relation to a different medical condition - not rls). I wonder if this explains the widely differing responses of sufferers to cannabis as a treatment drug. I wish I could find a strain that mine responded to.

Shumbah profile image
Shumbah in reply toinvoluntarydancer

It gave me such a fright I have not tried my old mm again yet, I will in time. I’m sure you have googled the stains for spasticity.

Doctor should know which strains to give for the conditions they are prescribing for.They do on the black market here only they are not doctors 😆

involuntarydancer profile image
involuntarydancer in reply toShumbah

It seems to me that we are only gradually gaining insight into the full potential and limitations of mm as a medical treatment generally. It will be interesting to hear how you get on if you revert to your previous strain - though I can totally relate to your disinclination to try it for a while. Once one has achieved an effective regime for previously uncontrolled rls one is very reluctant to even countenance anything that might jeopardize it.

Shumbah profile image
Shumbah in reply toinvoluntarydancer

It is such an insidious disease last night an hour or so after falling asleep I had a nightmare which is very rare for me however in this dream I won’t go into to all the details for fear of creating such an event however one of the standouts was I did not have my medication for my legs I kept trying to escape simply to get my medication it was so terrifying I stayed up until dawn before going back to sleep and even now I am scared to sleep tonight for fear of revisiting that horrible event and the fear of being trapped

With diseases and no medication.

It truly is unbelievable I am

So fortunate to have met Dr Brooks and have a medication that works so well and yet still so very traumatised.

And what makes it worse is that mostly no one cares and we are treated as if we have imaginitis !!!

involuntarydancer profile image
involuntarydancer in reply toShumbah

What is so upsetting is that there are many sufferers trapped in that exact nightmare situation - and by their own medical advisors. However, your story is giving hope to many. I hope you have more pleasant dreams tonight.

Suberino profile image
Suberino

Hello Shumbah, Thanks for much for keeping us posted. Even tho I am in the UK, hearing about the difference that Buprenorphine makes to someone having RLS as severely as you clearly did is such an encouragement. And who knows, if you get your book published and we all buy it and send it to our GPs maybe things will change here oneday! We are allowed to dream! Sue

grandpianoman profile image
grandpianoman

I am SO happy for you! Thank you for telling us your story, as we care about each other on this site. And we are encouraged to keep educating and advocating for buprenorphine, on behalf of ourselves and others.

Swimming2018 profile image
Swimming2018

It’s great to hear a good news story. I’m delighted you are so well. Hopefully, we can all try Buprenorphine at some stage

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