Retigabine (Trobalt, Potiga) — General Discussion

[Markku]

There is no need to call anyone in a degrading and insulting manner, however much you may disagree with them or a theory.

Some posts were cleaned up from this thread, and from now on please get back to topic.

Markku

 

[Viking]

Soon to become a drug dealer of new medicines ....

 

[Christian78]

Soon to become a drug dealer of new medicines ....

Well maybe for EU, but surely cant send it to Canada or USA or Austria, they will not pass x-ray scanners.

Plus by EU law you are criminal if you are resealing illegal medical substance that is prescribed to you. Other people would have to have prescription, and you would have to have pharmacy to export it. We are not living in 1990 today all mail is checked.

 

[cdog]

Well maybe for EU, but surely cant send it to Canada or USA or Austria, they will not pass x-ray scanners.

Plus by EU law you are criminal if you are resealing illegal medical substance that is prescribed to you. Other people would have to have prescription, and you would have to have pharmacy to export it. We are not living in 1990 today all mail is checked.

Not really. Many people are routinely ordering illegal drugs online via the darknet. It comes to them by mail and they receive it just fine.

 

[jazz]

Not really. Many people are routinely ordering illegal drugs online via the darknet. It comes to them by mail and they receive it just fine.

Anyone considering obtaining Retigabine through this route has to be very careful... There's no quality control....

I understand people's desperation, of course. Some days, I think I'm one spike away from going on the drug myself. But getting drugs directly form the darknet worries me. The drugs could be adulterated with toxic substances. It's happened before.

Just saying you need to be very careful about this.... We don't want people getting poisoned.

 

[Jay M]

Anyone considering obtaining Retigabine through this route has to be very careful... There's no quality control....

I understand people's desperation, of course. Some days, I think I'm one spike away from going on the drug myself. But getting drugs directly form the darknet worries me. The drugs could be adulterated with toxic substances. It's happened before.

Just saying you need to be very careful about this.... We don't want people getting poisoned.

Is there a way to obtain it and then have a lab or some one qualified to test it for purity?

 

[attheedgeofscience]

I really consider trying it out, and speak to my ENT about it.

For something like Trobalt and using it for off-label purposes, you will almost certainly not get a prescription from an ENT. Epileptic medication is prescribed by a neurologist. Alternatively, it may be prescribed by a general practitioner. A neurologist is a specialist whom you most often will not have met before. That becomes a factor when asking for medicine that essentially is used in an experiment. In this case, he/she will be uncomfortable in prescribing it. So in this case, returning to your GP may well be the best option in the end (provided he/she knows you). However, you will need to bring along some material to document your case. Your GP will never have heard of Trobalt used as a potential treatment for tinnitus.

Also: being on this type of medication is no picnic; people tend to underestimate side-effects of "hard-core" medicine. There is a big difference in taking a 5-7 day course of eg. antibiotics or painkillers, and then having to be on a certain type of medicine for several months...

 

[Christian_B]

For something like Trobalt and using it for off-label purposes, you will almost certainly not get a prescription from an ENT. Epileptic medication is prescribed by a neurologist. Alternatively, it may be prescribed by a general practitioner. A neurologist is a specialist whom you most often will not have met before. That becomes a factor when asking for medicine that essentially is used in an experiment. In this case, he/she will be uncomfortable in prescribing it. So in this case, returning to your GP may well be the best option in the end (provided he/she knows you). However, you will need to bring along some material to document your case. Your GP will never have heard of Trobalt used as a potential treatment for tinnitus.

Also: being on this type of medication is no picnic; people tend to underestimate side-effects of "hard-core" medicine. There is a big difference in taking a 5-7 day course of eg. antibiotics or painkillers, and then having to be on a certain type of medicine for several months...

Yeah you got a point. I doubt my GP will ever prescribe it to me, she is more like the "learn to live with it"-type, and i've had her as a doctor since i was a little boy, and because of that i doubt she will prescribe Trobalt for me, and she doesn't know anything about T. at all.

 

[locoyeti]

I talked to my neurotologist today about retigabine. I had emailed him numerous papers to read, and I arrived at the meeting with some print outs for him. He is a nice enough doctor, (he was willing to give me intratympanic dexamethasone shots, which he had never given before for tinnitus patients, only for SSHL patients - I opted to AM-101 instead) but he came into the room basically saying that he wouldn't give it off label because it had never been given for tinnitus before. He offered to give me dexa shots, which I politely declined. I gave him my pitch and I think I at least impressed him enough for him to reconsider. He said he would consult with his neurologist colleagues and also the hospital because they would have to approve him offering the drug off-label. He said that if he were a private practice doctor, he would not be beholden to a hospital system and would be more inclined to prescribe a drug like this off-label, so for those searching for doctors I would probably start with private practice neurologists first. I will know in a week his answer. I had mentioned that there were some people on this forum who had obtained a prescription from their doctor, and he said he would like to talk to those doctors to consult with them. If any of you kind and brave participants would be confortable with divulging that information, please PM me, I would greatly appreciate it.

 

[SteveToHeal]

I talked to my neurotologist today about retigabine. I had emailed him numerous papers to read, and I arrived at the meeting with some print outs for him. He is a nice enough doctor, (he was willing to give me intratympanic dexamethasone shots, which he had never given before for tinnitus patients, only for SSHL patients - I opted to AM-101 instead) but he came into the room basically saying that he wouldn't give it off label because it had never been given for tinnitus before. He offered to give me dexa shots, which I politely declined. I gave him my pitch and I think I at least impressed him enough for him to reconsider. He said he would consult with his neurologist colleagues and also the hospital because they would have to approve him offering the drug off-label. He said that if he were a private practice doctor, he would not be beholden to a hospital system and would be more inclined to prescribe a drug like this off-label, so for those searching for doctors I would probably start with private practice neurologists first. I will know in a week his answer. I had mentioned that there were some people on this forum who had obtained a prescription from their doctor, and he said he would like to talk to those doctors to consult with them. If any of you kind and brave participants would be confortable with divulging that information, please PM me, I would greatly appreciate it.

Are you prepared to do Retigabine in conjunction with AM101 or are you finished with AM101 ?

 

[Markku]

This was added now.

https://www.tinnitustalk.com/threads/retigabine-trobalt-potiga-—-user-experiences.6047/

Anytime a member submits the form (either the New Participant or the Progress Report form), the form's content is automatically submitted to the above thread.

We got some feedback from people who wanted this feature, and here you go. Live results!

 

[locoyeti]

Are you prepared to do Retigabine in conjunction with AM101 or are you finished with AM101 ?

No. It will be either one or the other, and I am 90% sure I will not do AM-101 anyway.

 

[Rube]

This was added now.

https://www.tinnitustalk.com/threads/retigabine-trobalt-potiga-—-user-experiences.6047/

Anytime a member submits the form (either the New Participant or the Progress Report form), the form's content is automatically submitted to the above thread.

We got some feedback from people who wanted this feature, and here you go. Live results!

Thanks Markku, this is very helpful!

 

[rtwombly]

@Mpt Could you please clarify about your Nasonex use from the user experiences, please? Like how often and for how long have you been using it? Nobody on here is going to think this way, but when presenting our case to doctors, some of them may say, "That guy must have been a clogged Eustachian tube, and the Nasonex cured it."

 

[rtwombly]

yes wouldnt an eeg show our brain activity and give them clues on meds to help the brain get under control with out bad side effects?????? tinnitus is brain related so seems like an eeg would tell them something??/

Drugs like retigabine and AUT00063 came about because of imaging technologies such as fMRI that can show very precisely where aberrant brain activity is present. This lead to the discovery revealed in May 2013 that tinnitus presents as dysfunctional activity in the dorsal cochlear nucleus - part of the brain, not part of the ear - and the suggestion that potassium channel modulation could play a role in its treatment.

Dr. Charles H. Large, CEO of Autifony Therapeutics, did extensive studies of retigabine before embarking on the investigations that led to AUT00063 as a possible cure with hopefully few side effects. That study came out in September of 2012.

So basically we have a timeline that goes like this:

2009 - retigabine comes on the market
2012 - Dr. Large studies retigabine's effectiveness as an anti-seizure medicine for epileptics
May 2013 - Thanos Tzounopoulos, PhD and his team at the University of Pittsburgh announce discovery of the underlying mechanisms of tinnitus in the brain, suggest that retigabine could be effective as a preventative medicine before sound exposure
June 2013 - Autifony Therapeutics, with Dr. Large at the helm, begins Phase I testing of AUT00063
July 2014 - Mpt starts taking retigabine as a treatment for his 6-month old tinnitus

So EEG is really a primitive tool compared to what has been used, but you are absolutely correct that being able to see the activity of the tinnitus in brain has been the key to unlocking this mystery.

 

[Dr. Nagler]

I am not commenting one way or another about Retigabine, but I cannot see what the big deal is about off-label prescribing. It's done all the time.

See, for instance, http://www.webmd.com/a-to-z-guides/features/off-label-drug-use-what-you-need-to-know

Dr. Stephen Nagler

 

[111]

I am not commenting one way or another about Retigabine

just wondering have you tried it yourself, or will you try it at all ?

 

[Dr. Nagler]

just wondering have you tried it yourself, or will you try it at all ?

As with every medical decision, you have to look at the benefit to risk ratio specifically as it applies to your own current clinical situation. Back in 1994, if Retigabine were available, I might have seriously considered it. Today I absolutely would not. My tinnitus is the same as it was in 1994 - just as loud and just as pitchy - but I no longer react to it. For me, the fact that I no longer react to it changes the benefit to risk ratio.

Dr. Stephen Nagler

 

[Jay M]

Back in 1994, if Retigabine were available, I might have seriously considered... My tinnitus is the same as it was in 1994 - just as loud and just as pitchy...

Dr. Stephen Nagler

I find your comment to not try Retigabine bc you don't react to your T now inspiring but confusing at the same time. I guess it's the fear of a setback of emotions and habituation over curiosity.
If I recall correctly another member in another thread and post said that you could hear your T over Niagara Falls. Is that true and do you have hearing loss, if you don't mind me asking?
Since you're not considering Retigabine, of all the meds or supplements you may have tried in the past, is there anything that stands out that helped a little?

 

[SteveToHeal]

I am not commenting one way or another about Retigabine, but I cannot see what the big deal is about off-label prescribing. It's done all the time.

See, for instance, http://www.webmd.com/a-to-z-guides/features/off-label-drug-use-what-you-need-to-know

Dr. Stephen Nagler

This is more the issue: "...doctors are free to prescribe a drug for any [reason they think is medically appropriate],..."" - guys on this forum have seen, some doctors do not see Retgabine as being "medically appropriate". So it's not a given you'll get a prescription if you ask for one. It all depends which doctor you get. Some members are struggling to get prescriptions.

 

[Dr. Nagler]

If I recall correctly another member in another thread and post said that you could hear your T over Niagara Falls. Is that true and do you have hearing loss, if you don't mind me asking?
Since you're not considering Retigabine, of all the meds or supplements you may have tried in the past, is there anything that stands out that helped a little?

@Jay M -

This thread is about Retigabine. I am happy to discuss the types of things you are talking about elsewhere on the board, but to do so here would take the thread off topic.

Dr. Stephen Nagler

 

[Eric Fridley]

can i just ask my GP for a prescription of Retigabine on Monday cause right now i would rather have a decreased T or even cured rather then the side effects and with only 3 months and 6 days of tinnitus it will probaly help me a lot jus tliek it did mpt

 

[dan]

can i just ask my GP for a prescription of Retigabine on Monday cause right now i would rather have a decreased T or even cured rather then the side effects and with only 3 months and 6 days of tinnitus it will probaly help me a lot jus tliek it did mpt

YES

 

[Eric Fridley]

YES

k cool and ill keep u guys updated to see what it does to me

 

[Rube]

k cool and ill keep u guys updated to see what it does to me

i hope it helps you buddy. definitely keep us updated!

 

[rtwombly]

k cool and ill keep u guys updated to see what it does to me

Piece of advice, Eric. If your GP doesn't want to go for the retigabine right away but suggests something else, go along but make sure he understands that if what he's offering doesn't help you'll be back. Make it clear that you're suffering and that you don't have the patience to try things for weeks on end. Hate to say it, but I kinda think I might have hurt my chances by being too upbeat on my doctor's appointments. I don't know if the docs believed how bad my bad times can be.

 

[SoulStation]

Just a little positive note even though I just got home from dropping another $400 on my 3rd/4th week supply. I can honestly say I went to my closet and the tonal aspects of my t have never been this low ... Still a slight hiss but I am still on 100 3x a day at 2 weeks now ... I know this should be on he progress report page but I felt like sharing it here. I also may add I haven't taken any Ativan today which I am weening off. I have had a horrible day but this has capped it off with an ounce of hope in my pessimistic world right now.

 

[Rube]

Just a little positive note even though I just got home from dropping another $400 on my 3rd/4th week supply. I can honestly say I went to my closet and the tonal aspects of my t have never been this low ... Still a slight hiss but I am still on 100 3x a day at 2 weeks now ... I know this should be on he progress report page but I felt like sharing it here. I also may add I haven't taken any Ativan today which I am weening off. I have had a horrible day but this has capped it off with an ounce of hope in my pessimistic world right now.

awesome news! im glad you are getting some relief!

 

[SoulStation]

awesome news! im glad you are getting some relief!

Thanks bro. I can tell it's going to be short lived because of my low dosage and the short half life of this med but. I honestly say it was down for sure. Not a mind trick or placebo. I've sadly been monitoring my T for too long to not be able to tell the difference.

 

[undecided]

That's great news @SoulStation.
Even a small relief can make a world of a difference.
Hope you keep getting better.