MemberNah, seems a little far fetched. That dude's english wasnt that good either so if he was working for Autifony you would expect a little more smooth talk. Maybe he comes back, who knows. I just can't see the point in faking it.
Retigabine (Trobalt, Potiga) — General Discussion
- Thread starter Mpt
- Start date
Nah, seems a little far fetched. That dude's english wasnt that good either so if he was working for Autifony you would expect a little more smooth talk. Maybe he comes back, who knows. I just can't see the point in faking it.
SteveToHeal
Member
https://www.tinnitustalk.com/members/jamesdk.4928/
This member limits who may view their full profile.
Hmmmm...???
Yeah, just saw that. Seems weird and fishy. But still, what the heck can you gain by promoting a medication that's already on the market for epilepsy on a T board?
SteveToHeal
Member
Hi @jamesdk. Are you legit?
Your profile says you have had Tinnitus Since 1998 but is limited who may view your full profile.
You said you have been taking trobalt and that your T is ringing (10000 hz) and has decreased 70-80%!! 100mg three times daily.
Can you update us or give us information how your T was, how you got it, when you started taking trobalt, dosage, cost, etc. You are potentially number 3 miracle man. Any ladies on here who would be willing to try it? It would be useful information.
Tx
Your profile says you have had Tinnitus Since 1998 but is limited who may view your full profile.
You said you have been taking trobalt and that your T is ringing (10000 hz) and has decreased 70-80%!! 100mg three times daily.
Can you update us or give us information how your T was, how you got it, when you started taking trobalt, dosage, cost, etc. You are potentially number 3 miracle man. Any ladies on here who would be willing to try it? It would be useful information.
Tx
SteveToHeal
Member
Hi all,
Might be a bit late on this... Is this the articles(s) that inspired Mpt to try Retigabine(Trobalt/Potiga)
http://www.dailymail.co.uk/health/a...TINNITUS-reduces-hyperactivity-cells-ear.html
http://www.upmc.com/media/newsreleases/2013/pages/pitt-team-finds-mechanism-causes-tinnitus.aspx
Might be a bit late on this... Is this the articles(s) that inspired Mpt to try Retigabine(Trobalt/Potiga)
http://www.dailymail.co.uk/health/a...TINNITUS-reduces-hyperactivity-cells-ear.html
http://www.upmc.com/media/newsreleases/2013/pages/pitt-team-finds-mechanism-causes-tinnitus.aspx
Thanks for the article link!
Seems like not only the drug could prevent T but it could also treat existing T.
Based on the feedback from our friends here I would guess that those with acute T like mpt will have high chance to benefit from it or even cured! And since those with chronic T like viking also has improvement i think it is very likely that it could even cure chronic T if the drug is being taken for longer time
Seems like not only the drug could prevent T but it could also treat existing T.
Based on the feedback from our friends here I would guess that those with acute T like mpt will have high chance to benefit from it or even cured! And since those with chronic T like viking also has improvement i think it is very likely that it could even cure chronic T if the drug is being taken for longer time
Hi Steve,
The second link is the article I first read, I also found a more in depth overview of the study online too... that same research team is in the process of testing retigabine on chronic tinnitus in the rat model- that wasn't a focus of the first study.
-Matt
- Jun 26, 2014
- 2,264
- Tinnitus Since
- 11/2013
- Cause of Tinnitus
- Drugs barotrauma
Or a weird dude that gets off on that kind of thing? Who knows!
It would be nice if he came back on and proved us all wrong.
I am very angry. No neurologist wants to prescribe a treatment plan based on Trobalt. Damn ignorance. They argue that it is appropriate to try another (which I have already tried FOR YEARS without results) and that Trobalt is not indicated in tinnitus. Trobalt is not present in the pharmaceutical reference book. How is this possible? I can not believe the level of ignorance. Is it possible that we know better than them?
I need your opinion. If I make a video on youtube could serve to raise awareness of the scientific community towards a problem that most likely we already have a drug that can give you relief?
I'm too angry. Incredible stupidity.
Thanks all!
Must fight!
Ivan
I need your opinion. If I make a video on youtube could serve to raise awareness of the scientific community towards a problem that most likely we already have a drug that can give you relief?
I'm too angry. Incredible stupidity.
Thanks all!
Must fight!
Ivan
If I were a Neurologist why would I take the risk to prescribe a drug that's not well known and under safety surveillance? Those people have been told for decades that T. can't be cure and don't give a shit.
Trobalt is a risky drug on the long term and they don't want any trouble, even if it's at the patient expense.
Also Glaxosmithkline is a major shareholder of Autifony, and for sur they don't want any possible association between the bad reputation of Trobalt & the upcoming AUT00063 that are relatively similar (for the common, but so different if you have some expertise
). So they are probably trying to sweep the drug under the rug in my opinion.Regarding the possible actions, I see several options:
- We wait for having around 10 success stories with trobalt and we write an open letter to the ATA, Glaxosmithkline and Media.
- If one of us has some media influence on Twitter he/she could also try tro ping the ATA, or Glaxosmithkline directly.
- We get one balsy doctor to share the information after he tried with a few patients.
Johno
Member
- Jan 8, 2014
- 231
- Tinnitus Since
- 6/07/2012
- Cause of Tinnitus
- acoustic trauma
Oh yeah, its common
In my country for example, here is a lot of "lapiduch". "Lapiduch" - in exactly translation it means "Ghost catcher" - someone, who is catching ghosts And it means, he/she is a doctor, has an education, but he/she is dumb like piece of wood and can only practice woodoo or so so. 
Anyway, we had few really good doctors.
- Jan 25, 2013
- 3,596
- Tinnitus Since
- 2008
- Cause of Tinnitus
- TMJ disorder, airplane barotrauma, noise exposure.
- Dec 24, 2013
- 933
- Tinnitus Since
- (1956) > 1980 > 2006 > 2012 > (2015)
- Cause of Tinnitus
- Ac. Trauma & Ac.Trauma + Meds.
Two questions please...for Matt @Mpt and @benryu, or anyone about to take this med:
1. Matt, you mentioned having a talk with the folks who worked on this drug at the University of Pittsburgh. Did they give any info as to timelines on their future research, or hints of what they were going to do with it, etc.? Any other tidbits of what you might have read between the lines???
2. @benryu, (and anyone really). First off I thought your comment about the picture of all those meds boxes was hilarious. And really, I hope you don't take offense Viking, as indeed I feel great empathy for you and know all to well the desperation of trying to find something that works to get one's health and life back. 'Dark humour' is sometimes all we have but it's better than no humour
OK, now the more serious side...and this is something I have some extensive personal experience with. When I was severely ill with no diagnosis for over seven years I was taking a lot of meds, supplements, herbs, whatever, during those first years...Anything! Whatever the docs said that made sense to my addled brain. However, after four years, I began to realize that less was better. In fact when I gave up all meds I actually started to improve! - Long story.
My point being...Retigabine/Potiga is not the lightest duty drug and God knows what the "combination effects" are or could be. So, I think we should be careful in the future, to be aware that:
a). Personal differences are likely just from the 'we are all different how we may react to med x, y, or z' aspect...and
b). To take careful note of what other meds/drugs that person trialing the Retigabine may be taking as well.
So, @benryu...you sound pretty 'clean' and likely to try this stuff soon. Are you comfortable sharing what else you may be taking???
Likewise @Mpt Matt??? @Christian78???...and @Viking - are you just taking the Rivotril (Klonopin, Clonazepam), or other things as well??? (Not including the Retigabine of course).
Now I completely understand if anyone/everyone does not want to share their meds history, or current medicine cabinet on a public forum like this...but if you are OK with it I think it would be both wise and useful for all of us.
For my part, I am just taking 1 mg of Clonazepam nightly for sleep, even though it is now useless for that (have adapted to it) and I intend to drop it - but it is hard to get off = anxiety and shit moves in fast. That's it. Nothing else except some temporary, minor pain meds past few days for pulled tooth.
I'm asking my doc for a prescription for Potiga today and sending him the link to this thread, so I'm all set to go the moment I return from my back-packing trip (leaving in a week, for 10 days)...Unless something 'bad' happens in the interim. If anyone on this board classifies as a "Long Term Tinnitus Candidate", that's me!!!
So please keep on reporting all...and this sure is cool to be seeing after 58 years of waiting. Though....yeah, yeah, I'm not getting carried away. It is very, very embryonic still and we need to be alert, informed and sharing as much detail as possible.
Again...THANK YOU to all for forging ahead on this, and in particular Matt...as the initial spark.
Very best, Zimichael
1. Matt, you mentioned having a talk with the folks who worked on this drug at the University of Pittsburgh. Did they give any info as to timelines on their future research, or hints of what they were going to do with it, etc.? Any other tidbits of what you might have read between the lines???
2. @benryu, (and anyone really). First off I thought your comment about the picture of all those meds boxes was hilarious. And really, I hope you don't take offense Viking, as indeed I feel great empathy for you and know all to well the desperation of trying to find something that works to get one's health and life back. 'Dark humour' is sometimes all we have but it's better than no humour
OK, now the more serious side...and this is something I have some extensive personal experience with. When I was severely ill with no diagnosis for over seven years I was taking a lot of meds, supplements, herbs, whatever, during those first years...Anything! Whatever the docs said that made sense to my addled brain. However, after four years, I began to realize that less was better. In fact when I gave up all meds I actually started to improve! - Long story.
My point being...Retigabine/Potiga is not the lightest duty drug and God knows what the "combination effects" are or could be. So, I think we should be careful in the future, to be aware that:
a). Personal differences are likely just from the 'we are all different how we may react to med x, y, or z' aspect...and
b). To take careful note of what other meds/drugs that person trialing the Retigabine may be taking as well.
So, @benryu...you sound pretty 'clean' and likely to try this stuff soon. Are you comfortable sharing what else you may be taking???
Likewise @Mpt Matt??? @Christian78???...and @Viking - are you just taking the Rivotril (Klonopin, Clonazepam), or other things as well??? (Not including the Retigabine of course).
Now I completely understand if anyone/everyone does not want to share their meds history, or current medicine cabinet on a public forum like this...but if you are OK with it I think it would be both wise and useful for all of us.
For my part, I am just taking 1 mg of Clonazepam nightly for sleep, even though it is now useless for that (have adapted to it) and I intend to drop it - but it is hard to get off = anxiety and shit moves in fast. That's it. Nothing else except some temporary, minor pain meds past few days for pulled tooth.
I'm asking my doc for a prescription for Potiga today and sending him the link to this thread, so I'm all set to go the moment I return from my back-packing trip (leaving in a week, for 10 days)...Unless something 'bad' happens in the interim. If anyone on this board classifies as a "Long Term Tinnitus Candidate", that's me!!!
So please keep on reporting all...and this sure is cool to be seeing after 58 years of waiting. Though....yeah, yeah, I'm not getting carried away. It is very, very embryonic still and we need to be alert, informed and sharing as much detail as possible.
Again...THANK YOU to all for forging ahead on this, and in particular Matt...as the initial spark.
Very best, Zimichael
- Jun 26, 2014
- 2,264
- Tinnitus Since
- 11/2013
- Cause of Tinnitus
- Drugs barotrauma
If I were a Neurologist why would I take the risk to prescribe a drug that's not well known and under safety surveillance? Those people have been told for decades that T. can't be cure and don't give a shit.
Trobalt is a risky drug on the long term and they don't want any trouble, even if it's at the patient expense.
Also Glaxosmithkline is a major shareholder of Autifony, and for sur they don't want any possible association between the bad reputation of Trobalt & the upcoming AUT00063 that are relatively similar (for the common, but so different if you have some expertise
Regarding the possible actions, I see several options:
- We wait for having around 10 success stories with trobalt and we write an open letter to the ATA, Glaxosmithkline and Media.
- If one of us has some media influence on Twitter he/she could also try tro ping the ATA, or Glaxosmithkline directly.
- We get one balsy doctor to share the information after he tried with a few patients.
Are trobalt and autooo63 not associated with each other through Glaxosmithkline?
Glaxosmithkline developed retigabine and are also a major shareholder in autifony.
Two questions please...for Matt @Mpt and @benryu, or anyone about to take this med:
1. Matt, you mentioned having a talk with the folks who worked on this drug at the University of Pittsburgh. Did they give any info as to timelines on their future research, or hints of what they were going to do with it, etc.? Any other tidbits of what you might have read between the lines???
2. @benryu, (and anyone really). First off I thought your comment about the picture of all those meds boxes was hilarious. And really, I hope you don't take offense Viking, as indeed I feel great empathy for you and know all to well the desperation of trying to find something that works to get one's health and life back. 'Dark humour' is sometimes all we have but it's better than no humour
OK, now the more serious side...and this is something I have some extensive personal experience with. When I was severely ill with no diagnosis for over seven years I was taking a lot of meds, supplements, herbs, whatever, during those first years...Anything! Whatever the docs said that made sense to my addled brain. However, after four years, I began to realize that less was better. In fact when I gave up all meds I actually started to improve! - Long story.
My point being...Retigabine/Potiga is not the lightest duty drug and God knows what the "combination effects" are or could be. So, I think we should be careful in the future, to be aware that:
a). Personal differences are likely just from the 'we are all different how we may react to med x, y, or z' aspect...and
b). To take careful note of what other meds/drugs that person trialing the Retigabine may be taking as well.
So, @benryu...you sound pretty 'clean' and likely to try this stuff soon. Are you comfortable sharing what else you may be taking???
Likewise @Mpt Matt??? @Christian78???...and @Viking - are you just taking the Rivotril (Klonopin, Clonazepam), or other things as well??? (Not including the Retigabine of course).
Now I completely understand if anyone/everyone does not want to share their meds history, or current medicine cabinet on a public forum like this...but if you are OK with it I think it would be both wise and useful for all of us.
For my part, I am just taking 1 mg of Clonazepam nightly for sleep, even though it is now useless for that (have adapted to it) and I intend to drop it - but it is hard to get off = anxiety and shit moves in fast. That's it. Nothing else except some temporary, minor pain meds past few days for pulled tooth.
I'm asking my doc for a prescription for Potiga today and sending him the link to this thread, so I'm all set to go the moment I return from my back-packing trip (leaving in a week, for 10 days)...Unless something 'bad' happens in the interim. If anyone on this board classifies as a "Long Term Tinnitus Candidate", that's me!!!
So please keep on reporting all...and this sure is cool to be seeing after 58 years of waiting. Though....yeah, yeah, I'm not getting carried away. It is very, very embryonic still and we need to be alert, informed and sharing as much detail as possible.
Again...THANK YOU to all for forging ahead on this, and in particular Matt...as the initial spark.
Very best, Zimichael
Hey, I have no issue sharing exactly what I am taking when I will start Ratagabine.
At the moment my only concern is to import the drug from Europe to Canada, it's a total mess. But I have good hope I am going to get it.
I think I'll be a good guinea pig for the following reasons:
- I am super healthy and don't take any other medicine.
- I don't smoke, I don't drink, I don't eat meat
and I won' t consume any other subtstance that may interact with the drug. So when I will take Ratagabine, it will be the only thing I take.- My T. was noise induced in 2008 (pretty standard), it has been super stable and increased when I was exposed to loud noise this year, but it's super stable. So if it changes I will notice it easily.
- I am a trained researcher so I will apply to this self-trial a strict methodology.
- The design of the trial and dosage has been extensively discussed with several doctors, and friends into the medical field.
- I will share almost on daily basis on this forum the evolution of my T. with the Retigabine
SteveToHeal
Member
Yes but it could quite well be that Glaxosmithkline are sending out the LABEL WARNINGS on Trobalt/Potiga/Retigabine to get it taken off the shelves, in view of the forthcoming success of AUTooo63, in which they have 25% share holding. Maybe they made that deal with Autifony.
Rather have a targeted drug in Autifony than an "effective" one with potential side effects over time. The medical world / FDA will accept (we hope) a drug based on its trial results. Retigabine has too many "reported" side affects. Maybe GSK know that AUT00063 will work with zero side affects and their reason for ditching Retigabine, in favor for AUT00063 as a cure for T.
Is it not possible that Retigabine was the beta for AUT00063? Autifony spawned out of GSK. Look at their board. The CEO headed up GSK research. Maybe CEO of Autifony stumbled upon the cure, GSK wanted it and for it were willing to let CEO go it solo and start Autifony for a 25% share at a reduced rate? After all, the guy/gal that gets the winning formula will be rich beyond his/her wildest dreams.
GSK still benefit in the share holding.
- Aug 14, 2013
- 2,455
- Tinnitus Since
- Resolved since 2016
- Cause of Tinnitus
- Unknown (medication, head injury)
Feedback on newly introduced drugs is not treated in the fashion you describe (as I have indicated in another post earlier on this thread). It is part of the phase IV clinical trial (which strictly speaking is no longer a clinical trial).
Agreed, certain people might not care. But the pharmaceutical companies do. Especially when they see the opportunity to make extra money. And by far the most common fine that pharmas get these days is due to promoting their drugs for off-label use. The reason is quite simple: when having an already developed product in place, it is financially attractive to market it for other medical conditions, where possible. That way, the pharmas stand to cash in without having to put drugs through yet another round of clinical trials. So if a product was somehow a potential tinnitus cure, you can be sure that someone out there would pick-up on the lead...
http://en.wikipedia.org/wiki/List_of_largest_pharmaceutical_settlements
As it happens, I did a number of financial commentaries and market analyses in the following thread some days ago:
https://www.tinnitustalk.com/threads/auris-medical-ipo.5574/#post-57713
Autifony is a spin-out from GlaxoSmithKline. You cannot invest in it directly, but you can invest indirectly via (some of) its publicly listed investors which are Imperial Innovations, SV Life Sciences, and Pfizer Venture Investments. However, I don't believe you can necessarily invest in all of these either eg. Pfizer Venture Investments can only be invested in via Pfizer Inc (if I am not mistaken, at least; I hold shares in Pfizer myself, but I haven't had time to check the stock listings today for which companies are available for investments). So investing in Autifony can be a very indirect affair. I believe you can invest directly in Imperial Innovations, however.
Anyway, enough about all that...
Take care.
SteveToHeal
Member
So if we all club in to invest in Autifony, which indirect listed share "body"(company/investor/subsidiary or otherwise) would be the best and most stable option with highest ROI most tightly coupled to Autifony's imminent success? Call me the optimistic gambler. We may as well all benefit financially from T (or the cure)...to balance all the pain we have suffered from T.
My doc agreed to prescribe Trobalt (Retigabine) regarding my T, but he asked me if I could provide him some research to back this up, probably for his own sake, as he didnt know much about the Trobalt and T connection.
Does anyone have this kind of information easily available at hand in a PDF or something with sources etc?
If not, Ill have to find some information online and do some copy/past.
Thanks
Does anyone have this kind of information easily available at hand in a PDF or something with sources etc?
If not, Ill have to find some information online and do some copy/past.
Thanks
- Aug 14, 2013
- 2,455
- Tinnitus Since
- Resolved since 2016
- Cause of Tinnitus
- Unknown (medication, head injury)
That would be difficult to answer. Each of the companies have other business activities - which could influence the potential upside of a clinical trial success. On the other hand, AUT00063 may not make it past clinical trials phase III - or even worse, it may end up being drawn from the market post clinical trial (hypothetically speaking). As I mentioned on Friday, Trobalt has been drawn from the German market because of (long term) side effects. Germany is the larget country in Europe - so think about the implications when the health authorities make such a call. I am not necessarily saying that Autifony is going to suffer the same fate; all, I am saying is you can never predict how things will turn out (in the world of finance). I have covered a great deal of financial information in the Auris Medical IPO thread which - from a financial point-of-view - goes to the very core of the matter...
I realize there are people who downplay the signficance of the side-effects (from Trobalt), but when a major economy such as Germany decides to pull a product from the market, patients should at least reflect on this (the product is not pulled for some random reason, after all). Anyway, I am not going to go into this any further. We all have our own decisions to make. I will be seeing the professor of neurology as mentioned, and then I will make a decision based on that. Until then, I don't really have much more to say on this matter.
Take care.
My doc agreed to prescribe Trobalt (Retigabine) regarding my T, but he asked me if I could provide him some research to back this up, probably for his own sake, as he didnt know much about the Trobalt and T connection.
Does anyone have this kind of information easily available at hand in a PDF or something with sources etc?
If not, Ill have to find some information online and do some copy/past.
Thanks
http://journals.lww.com/thehearingj...ced_Tinnitus_Linked_to_Lower_Potassium.1.aspx (they even mention retagabine...)
http://www.behavioralandbrainfunctions.com/content/7/1/39
http://lifesciences.instinctif.com/...financing-with-further-5-5-million-investment
- Dec 24, 2013
- 933
- Tinnitus Since
- (1956) > 1980 > 2006 > 2012 > (2015)
- Cause of Tinnitus
- Ac. Trauma & Ac.Trauma + Meds.
@benryu ...Thanks much for the "personal profile" and drugs not being taken list. Great!
I too know my T intimately and it is very stable - well at each new 'major level' that is! Just noise spikes can jack it up briefly but those are very clear cause events. I'm real a real "show me!" skeptic at core too, and science background, etc. with fair amount of acquired medical knowledge. If something happens to my T out of the ordinary I will know it...absolutely.
Thanks for the finance feedback ATEOS...If anyone is interested here's the link for Imperial - though I agree with ATEOS's assessment of risks re investing. http://www.imperialinnovations.co.uk/investor-relations/
I have often lost more on investments I was certain made perfect sense than numerous idiotic ones that were pure garbage! Note - Imperial is a UK company.
And yeah, re the Ketamine/Retigabine comparison, I was not referring my docs' comments to the trial phases of drugs, but rather the rare, "unexpected" things that can show up once in general use. Though like you say, if I was a Big Pharma company I would jump on extra goodies that came up too! Hence my continued skepticism about his theory that Ketamine may re-boot my tinnitus. The Potiga is cheaper as well, so I put that on the top of my list.
Just sent doc request for the scrip. Now I just wait and watch what happens to all you guys in the interim!
Best, Zimichael
I too know my T intimately and it is very stable - well at each new 'major level' that is! Just noise spikes can jack it up briefly but those are very clear cause events. I'm real a real "show me!" skeptic at core too, and science background, etc. with fair amount of acquired medical knowledge. If something happens to my T out of the ordinary I will know it...absolutely.
Thanks for the finance feedback ATEOS...If anyone is interested here's the link for Imperial - though I agree with ATEOS's assessment of risks re investing. http://www.imperialinnovations.co.uk/investor-relations/
I have often lost more on investments I was certain made perfect sense than numerous idiotic ones that were pure garbage! Note - Imperial is a UK company.
And yeah, re the Ketamine/Retigabine comparison, I was not referring my docs' comments to the trial phases of drugs, but rather the rare, "unexpected" things that can show up once in general use. Though like you say, if I was a Big Pharma company I would jump on extra goodies that came up too! Hence my continued skepticism about his theory that Ketamine may re-boot my tinnitus. The Potiga is cheaper as well, so I put that on the top of my list.
Just sent doc request for the scrip. Now I just wait and watch what happens to all you guys in the interim!
Best, Zimichael
@Zimichael -
to answer your questions-- my interaction with that team has been very limited and I was just told that they are looking at retigabine in regards to chronic tinnitus now, but now timeline was mentioned
in regards to other medications i'm taking-- retigabine has been the only pill going in my mouth for the past month, I take nasonex nasal spray at the moment too (been on that for 5+ years)-- before starting retigabine I was trying various vitamins, nac, melatonin- but haven't been taking any of that stuff since I got on retigabine
Also, I appreciate your words, but my intentions to get on this stuff weren't magnamonious or humane in nature, I was simply tired of suffering like a beaten dog... that said I really hope this whole potassium channel avenue that the research is going down is the straw that breaks the camels back
to answer your questions-- my interaction with that team has been very limited and I was just told that they are looking at retigabine in regards to chronic tinnitus now, but now timeline was mentioned
in regards to other medications i'm taking-- retigabine has been the only pill going in my mouth for the past month, I take nasonex nasal spray at the moment too (been on that for 5+ years)-- before starting retigabine I was trying various vitamins, nac, melatonin- but haven't been taking any of that stuff since I got on retigabine
Also, I appreciate your words, but my intentions to get on this stuff weren't magnamonious or humane in nature, I was simply tired of suffering like a beaten dog... that said I really hope this whole potassium channel avenue that the research is going down is the straw that breaks the camels back
Dear @Zimichael :Two questions please...for Matt @Mpt and @benryu, or anyone about to take this med:
1. Matt, you mentioned having a talk with the folks who worked on this drug at the University of Pittsburgh. Did they give any info as to timelines on their future research, or hints of what they were going to do with it, etc.? Any other tidbits of what you might have read between the lines???
2. @benryu, (and anyone really). First off I thought your comment about the picture of all those meds boxes was hilarious. And really, I hope you don't take offense Viking, as indeed I feel great empathy for you and know all to well the desperation of trying to find something that works to get one's health and life back. 'Dark humour' is sometimes all we have but it's better than no humour
OK, now the more serious side...and this is something I have some extensive personal experience with. When I was severely ill with no diagnosis for over seven years I was taking a lot of meds, supplements, herbs, whatever, during those first years...Anything! Whatever the docs said that made sense to my addled brain. However, after four years, I began to realize that less was better. In fact when I gave up all meds I actually started to improve! - Long story.
My point being...Retigabine/Potiga is not the lightest duty drug and God knows what the "combination effects" are or could be. So, I think we should be careful in the future, to be aware that:
a). Personal differences are likely just from the 'we are all different how we may react to med x, y, or z' aspect...and
b). To take careful note of what other meds/drugs that person trialing the Retigabine may be taking as well.
So, @benryu...you sound pretty 'clean' and likely to try this stuff soon. Are you comfortable sharing what else you may be taking???
Likewise @Mpt Matt??? @Christian78???...and @Viking - are you just taking the Rivotril (Klonopin, Clonazepam), or other things as well??? (Not including the Retigabine of course).
Now I completely understand if anyone/everyone does not want to share their meds history, or current medicine cabinet on a public forum like this...but if you are OK with it I think it would be both wise and useful for all of us.
For my part, I am just taking 1 mg of Clonazepam nightly for sleep, even though it is now useless for that (have adapted to it) and I intend to drop it - but it is hard to get off = anxiety and shit moves in fast. That's it. Nothing else except some temporary, minor pain meds past few days for pulled tooth.
I'm asking my doc for a prescription for Potiga today and sending him the link to this thread, so I'm all set to go the moment I return from my back-packing trip (leaving in a week, for 10 days)...Unless something 'bad' happens in the interim. If anyone on this board classifies as a "Long Term Tinnitus Candidate", that's me!!!
So please keep on reporting all...and this sure is cool to be seeing after 58 years of waiting. Though....yeah, yeah, I'm not getting carried away. It is very, very embryonic still and we need to be alert, informed and sharing as much detail as possible.
Again...THANK YOU to all for forging ahead on this, and in particular Matt...as the initial spark.
Very best, Zimichael
i'm reducing the rivotril from 2mg to 1mg (at night) and don't take during the morning, and take trobalt 100mg at morning. The effect on tinnitus arrives around 1 hour. Instead rivotril is unuseful. In the photo I just wanted to show the legitimacy of all treatments carried out from 2012.
I remain at your disposal for any clarification
Ivan
- Jun 26, 2014
- 2,264
- Tinnitus Since
- 11/2013
- Cause of Tinnitus
- Drugs barotrauma
Hi Ivan,
Just a couple of questions if you don't mind....
Any further improvement on your tinnitus? I think you said a few days ago you were at 30-50 percent improvement...is this still the case?
You had also stated your tinnitus went away in one ear....is this ear still free of tinnitus or did it come back?
Thanks!
The improvement is stable. The right ear is always free at least until the next day. If I do not take Trobalt within 10:00 A.M. slowly begins to play. The left is unstable but more calm (thankfully). Continues to fluctuate. I'm waiting to be able to increase the dose in the coming weeks and see what happens. With Rivotril instead had only "minor attention towards him" but he never went down. Floated from right to left worse during the day.
Hope that useful.
http://www.dailystrength.org/c/Tinnitus/forum/16807054-retigabine I was searchin around, and most of you know more about this drug then me but why are people on other forums such as i posted saying that this drug only "prevents" from chronic T and that it wont be useful for chronics that have had it for years. So far we have mpt with accute that it techniqually "cured", and ivan thats chronic that it seemed to change/help his T so far. I just cant believe others around the world didnt try this and share there experience on it. And the scientists in PA that tested it said it was only a preventable measure from getting tinnitus with the rats, therefore im thinking if this drug doesnt help the chronics then retigabine/autifony will at least prevent ours from worsening? Sorry just trying to figure all this out.----- with all this said, i hope autifonys long term side effects arent as bad as retigabine if were gonna be on it for a while with no help to our T and just using it for a preventible measure.
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