So I have this amazing drug that works buprenorphine however I have had a hard time accessing it in Australia also the pharmacies have refused to fill my prescriptions even after they speak to the doctor or doctors I should say.
Lucky for me I brought back a years worth knowing I would need time to fight Queensland health.
I have just uploaded a video on You tube of me at the drug clinic before my appointment with the lovely Dr Haylliar.
I may do some more Videos on you tube about this wretched disease-we shall see
If you would like to watch
Just google Kester Howard restless legs and it should come up.
Never done anything like this before a bit nerve racking but people need to know what we have to go through 😖
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Shumbah
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I don’t think my journey in the slightest looks easy nor has it been.
$50000 in travel face to face appointments in foreign countries with no insurance and I can not not even count the weeks of hours I spent sitting in dry baths in hotel rooms in agony so as to not disturb my husband sending emails typing reports , correlating data endless dead end calls.
All the information I have is from professionals in the field and it has all been run past QUEENSLAND HEALTH trust me they are the hard ones to deal with QLD health argued with me telling me I actually caused RLS .
Anyway I now have it in writing and I am not the only one On buprenorphine in Australia
Trust me if it was not legal the pharmacy would not fill the prescription.
And if you read Dr Jeremy letter to the pharmacists it states what condition it is for and that it is indeed NOT for substance abuse in fact it is a drug that helps stops dependence .
Anyway I have done my mammoth bit .
I received an email the other day
That thanked me he said it was like being released from a 20 year prison term in a Bali prison .
Anyway I have done my mammoth bit !
If you would like more clarification you could contact the good doctor yourself only don’t rock my peaceful nights sleep and the other fortunate peoples now taking buprenorphine
I am actually pleased for people’s successes even if it is illegal marijuana etc
If it works and people are at peace I am thrilled for them to have relief from this vile disease.
My alternative was jumping from the balcony of my 24 floor apartment.
Ps although my posts are lengthy TRUST ME I have only shared the short clips .
I appreciate so much that you have taken on the journey to help others who don’t have the means. I would never have known about Dr. Glen Brooks and Buprenorphine, had it not been one of her posts. It’s always easy to criticize when you’re sitting at home, reading remedies online, but Kester has left her home and her country looking for treatments. We should give credit where credit is due.
You go Shumbah! Great clip, thanks for all the work you're doing raising awareness of the difficulties in accessing buprenorphine in Australia and elsewhere.
I now have my script filled now with an uninterrupted supply .
Take my letters with you and the contact details for Dr Tim Amos he is more than happy to talk to other doctors and will be easy to contact. If need be Dr Jeremy Hayllar also very helpful.
Ask for Subutex 2mg sublingual reasoning you can you a lessor dose and minimise side effects whilst working out the dose unique for you .
Please let me know how you go .
I would like to collect as much data on the use of buprenorphine so we can present the truth as Professor Richard Allen said he wishes he had funding for a study.
Thanks for all your hard work, Kester. Raising awareness is so important!! If it wasn’t for you I wouldn’t have known to call Dr. Glen Brooks. I’m hoping someday people outside of the US will have the same opportunity.
There's a special place in heaven reserved for you. Keep punching and let's get every MD to the place where they will be willing to prescribe low-dose opioids to palliate this loathsome condition. I was finally able to access low-dose methadone (5 mg, twice daily) and it has CHANGED MY LIFE! Like you, I also have been having problems with pharmacies reluctant to fill my prescriptions because of fears of the DEA hassling them.
Buprenorphine is the same as belbuca which is an opioid. It really did help me, but the only form of it that's abailable was a small patch that disolved by sticking it on the inside your mouth against your cheek. It could take up to an hour to disolve and l got sick from having to taste it in my mouth, so my pain management doctor switched me to other opioids that are in pill form which work just as well, but belbuca is supposed to be gentler.
You are very lucky to have a years worth because in the U.S states have very low limits of what they can prescribe and usually no more than 1 month.
I feel your pain and frustration and thanks for writing so others can see what goes on
Opioids work Great for me when taken under doctor's supervision and not abused. I find so much more relief, than taking 4 or 5 different prescriptions or OTC that drain you out, put you to sleep and do mot provide enough relief.
You can get opioids like Tramadol, codeine, OxyContin and oramorph in the UK but not buprenorphine or methadone even though they are safer and more effective. As our American cousins over the pond say ‘Go figure’.
It sounds like you may be suffering augmentation so read the pinned post and watch the videos about it on the main UK RLS site.
I used to be on fentanyl patches (not for RLS but another medical condition) and was switched to buprenorphine but it did not help me at all cause the doses were no where near the same so I went back on fentanyl. I no longer use the patches and am now on Targin and Endone and it has also helped with the RLS symptoms. It's hard finding a doctor to listen to you these days. I just had to find a new one and everyone I tried said they'd take me off the pain medication but I finally found one who understands why I need it and won't take it off me. I will check your video out.
Are your videos still available on YouTube, I have a friend who is seriously effected by this disease, and she has had any relief, the psychiatric medication are causing her serious problems and the psychiatrist don't listen, I told them not to use antidepressant and they did, then she could not sleep a wink. And ended locked in a ward, forced to take medication known to worsen the symptoms, causing her hysteria now
I am really struggling to recover with severe sepsis
Under my profile is a huge a lot of information.
If you have no yet done so I would put a post on here about your friend , we all have different experiences and you will get the best information and support.
Definitely go through my profile I print off any that me help
Hi thanks for your reply I would recommend to use half teaspoon raw honey and mix turmeric into the honey and eat 3 times per day, is a natural antibiotic, organic apple cider vinegar in a glass of water each morning, black strap molasses for minerals and iron, moringa the tree of life, is a powerful plant loaded with nutrients and is cheap to buy from a health food store.
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