Retigabine (Trobalt, Potiga) — General Discussion
- Thread starter Mpt
- Start date
Member
I believe he mentioned up above that he will take a month and a half to come off completely.
Thanks. This thread grows so quickly! I posted about Prof T, met my new Doctor, came home, and Mpt is moving to the last phase. Still exciting.
@Mpt thanks again for sharing your experience and your bravery. Please let us know how you feel after your first week of a reduced dose. If I can tell my doctor, "Yes, it's a terrible pill, but I only have to be on it for 3-4 months." that's a much easier sell (you'd think anyway).
SteveToHeal
Member
Hi William. Would you mind expanding on what legally tested or recognised as debilitated by tinnitus is? Last time I checked, tinnitus is not recognized as a disability i.e. One you can claim disability on. I don't mean to pry about your partner but what does legally tested mean?
That sounds like a better plan. Count me in.
We don't know enough yet to assume what he wants or what kind of person his is. IMHO, petitioning him to to do anything against his will would not be the best move right now. However, if it is a win win and both company and patient would/could benefit, then its a no brainer.
she groans in pain from morning to night, can hardly walk, talk, sleep, eat, housebound 19 months, 3 s attempts,
last time i checked, she was crying. beautiful children need their beautiful mother back, legally tested means it's legit. trust me friend, there's tinnitus and then there's tinnitus. under the circumstances, i'm motivated. I wish peace for everyone.
SteveToHeal
Member
I am very sorry to hear about her condition and situation. I am interested to know what legally tested is because I went though a legal ordeal that involved my T and hit a dead end ....with it not being classified as either a disability or even a medical condition. The result was I lost my job. It does not compare to your partners situation. I wish you all the best with the petition and her a speedy improvement in her T. Keep us all posted.
We feel for you too steve, thank you for the kind words, all i can say cos its all i know
is that were uk residents and she went thru assessments and various paperwork,
she was so bad she wasn't even requested to be seen at an official building
its uk govt stuff, youre entitled to the same fair treatment.
there are good people on this forum. gives us hope.
get well too man.
is that were uk residents and she went thru assessments and various paperwork,
she was so bad she wasn't even requested to be seen at an official building
its uk govt stuff, youre entitled to the same fair treatment.
there are good people on this forum. gives us hope.
get well too man.
SteveToHeal
Member
I am in South Africa and the UK could be very different to here. But I haven't heard anyone from the UK claiming disability for T. However, your partner sounds very much disabled so I am glad to hear her case is backed legally, whichever way it was done.
It would just be great if there was a medical legal test we could do - that would enable us to receive disability benefit whilst we are trying to get well - A lot of us are struggling with the damn thing and we get no support. We are just told learn to live with it or TRT or CBT or some other crap that might work and takes a long time. By that time, you have already gone insane, can't do your job anymore and wondering how life on the streets will be with T. It's a big area that I don't feel is being addressed.
It is not even considered a medical condition here. A mere symptom...a kin to sniffles for the flu virus.
An easy test is to do an qEEG, such as the one done by Dr.Jeanmonod in Switzerland.
It takes 7 minutes and it clearly shows all the abnomral brain activities in all brainwave bands and the severity of such. This test is also done at the Brain2N clinic in Belgium.
It takes 7 minutes and it clearly shows all the abnomral brain activities in all brainwave bands and the severity of such. This test is also done at the Brain2N clinic in Belgium.
SoulStation
Member
I'm assuming You can't just import this powder without a license?, unless you live in Somalia.
Also would you trust that it is the exactly the same quality compound as produced by GSK?
And thirdly, even if we were able to import this powder, how would we measure exact doses to the Mg-we'd need expensive pharmacy scales.
This all seems so far fetched.
dont know what you mean, most things are in powder form and are just then made into tablet form?
Unless it's on a controlled substance list, I don't think there is any problem importing it, without any kind of license or governmental permission. If you're saying that it breaks the patent on Retigabine, then perhaps GSK can sue the Chinese manufacturer, but I don't think can sue (or enforce anything with) the end user.
I'm sure there are places that can independently verify the chemical composition of a compound, or do a comparison between two provided samples. It might cost some money, but it's a one time investment.
All you would need is a milligram precision scale, probably even less precise than that. You can probably buy that for $20 or so.
As far as I understand, this type of drug is a controlled substance, and one needs a prescription to use it.
Why do you think we're all struggling to get our hands on this drug ?
Edit: it was a fun idea though
Why do you think we're all struggling to get our hands on this drug ?
Edit: it was a fun idea though
- Dec 24, 2013
- 933
- Tinnitus Since
- (1956) > 1980 > 2006 > 2012 > (2015)
- Cause of Tinnitus
- Ac. Trauma & Ac.Trauma + Meds.
Geeez Jilloveleeeze...I'l let you guys test the stuff from China. Now THAT is bravery!
@william2 .. re your posts and interest in KCNQ channels, etc. If you have not read the huge Australian "application" document (aka - Public Assessment Report for Retigabine) I think you would find it very beneficial.
http://www.tga.gov.au/word/auspar/auspar-retigabine-131017.docx
They did not share your outlook on cardiac effects:
Cardiac risk
The most important safety concern related to retigabine is the observation that 2 of 6 healthy volunteers exposed to a single oral dose of 900 mg experienced a substantial cardiac arrhythmia within 3 h: non sustained, asymptomatic ventricular tachycardia in one patient and cardiac arrest due to asystole in another patient. Both survived without sequelae, but this high incidence of arrhythmia (33%) is alarming, particularly given that the dose was only 2.25 times the recommended dose, and was less than the maximum recommended total daily dose.
It's a really thorough document and gives a lot of info, even though some 'questions' arise. (See my post on all this about a thousand pages back ).
best, Zimichael
@william2 .. re your posts and interest in KCNQ channels, etc. If you have not read the huge Australian "application" document (aka - Public Assessment Report for Retigabine) I think you would find it very beneficial.
http://www.tga.gov.au/word/auspar/auspar-retigabine-131017.docx
They did not share your outlook on cardiac effects:
Cardiac risk
The most important safety concern related to retigabine is the observation that 2 of 6 healthy volunteers exposed to a single oral dose of 900 mg experienced a substantial cardiac arrhythmia within 3 h: non sustained, asymptomatic ventricular tachycardia in one patient and cardiac arrest due to asystole in another patient. Both survived without sequelae, but this high incidence of arrhythmia (33%) is alarming, particularly given that the dose was only 2.25 times the recommended dose, and was less than the maximum recommended total daily dose.
It's a really thorough document and gives a lot of info, even though some 'questions' arise. (See my post on all this about a thousand pages back
).best, Zimichael
As far as I understand, this type of drug is a controlled substance, and one needs a prescription to use it.
Why do you think we're all struggling to get our hands on this drug ?
Edit: it was a fun idea though
I think the medicine is 'controlled' in the sense of the FDA not permitting GSK to just sell it without a prescription. But the chemical compound itself is not controlled - if you want you can synthesize it in your basement (ignoring any patent/copyright issues for now) and no DEA agents are going to be busting down your door. Same goes for ordering it from another country.
SoulStation
Member
I don't think kids are going to start selling this stuff at raves or EDM festivals but maybe they should! Might save a few T cases lol...
As far as I understand, this type of drug is a controlled substance, and one needs a prescription to use it.
Why do you think we're all struggling to get our hands on this drug ?
Edit: it was a fun idea though
I am in no way peddling this stuff or the supplier, i made an enquiry to them about getting it and they told me they could supply me with this stuff, thats all the info i was supplying, would be intersting to see what they would charge me though to supply say 5 kg of this stuff, i might ask them and see what they say ?
I have just asked them for the cost to supply to me, see what that is first, then i can ask about how they guarantee the purity afterwards
So they have just got back to me and the cost is as per below weights to deliver to myself, it costs more than the real stuff ?
We can offer pure retigabine for you, purity 99%
for 1kg price USD16500 including delivery fee to you
USD8700 for 500gram
USD5000 for 250gram
USD3000 for 100gram
USD120 for 1 gram sample
delivery fee time after fee paid 1-2 weeks will be ship
ship time : about 1 week ship to you .
SteveToHeal
Member
@attheedgeofscience - im sure you mentioned that you would try to get it in Germany, but it was taken off the market, but i guess you're still a Danish citizen? why don't you just go to Denmark and try and get it
I really consider trying it out, and speak to my ENT about it.
I really consider trying it out, and speak to my ENT about it.
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