Retigabine (Trobalt, Potiga) — General Discussion

[lapidus]

@Zimichael
What is that first thing on your list exactly and do your doc think that could treat H?

 

[Zimichael]

@lapidus...Well I don't want to 'abuse' this thread as it should be kept to the Retigabine/Potiga for continuity. I was thinking if some of this stuff I'm going to do works I would of course post it in a new thread.

To answer your question briefly: First up is "Neural Therapy" c/o my doc (who is an MD but also a certified acupuncturist, and about 100 other things) = injecting Procaine to block sympathetic nerves by ganglia clusters in neck at C6 and C7, though he wants to read up in his German textbook to see if there are better places to try. Object is to reduce my over-amped nervous system that he thinks is linked big time in to the H in particular. And depression. And lack of ability to sleep. And...yadda, yadda, yadda.

It's a cheaper option and easier option than getting knocked out with Ketamine = NDMA blocker, etc. (Which I gather may have ties to the "Ecstasy Treatment"/MMDA ...which I have not even looked at yet, so no nothing on that).

Best, Zimichael ....and my 6:00 am cup of coffee is wearing off, so I'd better leave that long research list and eat!

 

[dan]

hey dan,

Didn't the rats in the autifony study remain tinnitus free after getting off the drug?-- if so I wonder how to reconcile the two...

Hi Mpt. Thanks for the updates!
Well I don't know if the Autifony study mentioned the rats remained tinnitus free.
It said the drug abolished all evidence of tinnitus after administration - does that mean it was gone for good? I don't know...

 

[benryu]

Quick update: I could not get the Potiga today, despite my doctor was ok, the ENT freaked out and don't want to prescribe it as "he doesn't it and don't want to waste his precious time knowing more about it"...

So I am going back on wednesday to see my doctor, and try to get the drug directly from him.

Fuck this ENT.

 

[Hudson]

Quick update: I could not get the Potiga today, despite my doctor was ok, the ENT freaked out and don't want to prescribe it as "he doesn't it and don't want to waste his precious time knowing more about it"...

So I am going back on wednesday to see my doctor, and try to get the drug directly from him.

Fuck this ENT.

I have found that is a problem with a lot of ENTs. They have learned and practiced the "there is nothing that can be done about it, go home and deal with it. Here's an ATA pamphlet" mantra for so long they can't possibly comprehend that something MIGHT help a patient.

EDIT: I shouldn't make a blanket statement about ENTs. I'm sure many of them are absolutely frustrated by telling patients they just have to deal with their tinnitus. A lot of ENTs are participating (and will be the eventual people who administer) the AM-101 trials. There are open minded people out there, but there are a lot of people who aren't too.

 

[jazz]

I have found that is a problem with a lot of ENTs. They have learned and practiced the "there is nothing that can be done about it, go home and deal with it. Here's an ATA pamphlet" mantra for so long they can't possibly comprehend that something MIGHT help a patient.

Sad but true! I saw ENTs early into my tinnitus and was told "It wasn't that bad," "Nothing can be done," etc.

Here's an ATA pamphlet" mantra

Yeah, ironically, the ATA's biggest effect on the ENT community thus far has been to convince people that nothing can be done!

 

[Philip83]

I have found that is a problem with a lot of ENTs. They have learned and practiced the "there is nothing that can be done about it, go home and deal with it. Here's an ATA pamphlet" mantra for so long they can't possibly comprehend that something MIGHT help a patient.

Amen to that. Both ENT's I went to in Salzburg were useless. None of them listened to me for more than 30 sec, before interrupting me, explaining to me what tinnitus is. I was like, dude, I've had this for 13 years, I'm not a kid, I know what I'm dealing with.

 

[jazz]

So I am going back on wednesday to see my doctor, and try to get the drug directly from him.

@benryu I'm presuming this is your family practice doctor, i.e., a general doctor and not a specialist?

My family practice doctor was very willing to prescribe meds for me; but unfortunately I went to her too late--long after I saw one ENT and two neurotologists.

ENTs and neurotologists are primarily surgeons. Surgeons know little about internal medicine and are not interested in it. I do know several surgeons and one is a family member. They are more like carpenters than physicians.

Neurologists do know about internal medicine, but they typically don't find tinnitus interesting.

Psychiatrists are another option. Many are familiar and prescribe epileptic drugs; and, of course, they should be sympathetic to tinnitus sufferers since it does cause most people much mental anguish.

 

[benryu]

@benryu I'm presuming this is your family practice doctor, i.e., a general doctor and not a specialist?

My family practice doctor was very willing to prescribe meds for me; but unfortunately I went to her too late--long after I saw one ENT and two neurotologists.

ENTs and neurotologists are primarily surgeons. Surgeons know little about internal medicine and are not interested in it. I do know several surgeons and one is a family member. They are more like carpenters than physicians.

Neurologists do know about internal medicine, but they typically don't find tinnitus interesting.

Psychiatrists are another option. Many are familiar and prescribe epileptic drugs; and, of course, they should be sympathetic to tinnitus sufferers since it does cause most people much mental anguish.

Yeah my family practice doctor was ok, but the ENT specialist was ignorant.

"You see tinnitus is caused by blood circulation problems in the brain and your auditory system is now broken for the rest of your life"

I was really about to punch him in the face, for such ignorance and stupidity. This guy probably did not read any research paper for the last 30 years.

 

[jazz]

"You see tinnitus is caused by blood circulation problems in the brain and your auditory system is now broken for the rest of your life"

This guy probably did not read any research paper for the last 30 years.

So true....

But I'm sure he goes to all those wonderful professional meetings--where he can eat, drink, and vacation while getting credit for continuing education.

 

[jazz]

I shouldn't make a blanket statement about ENTs. I'm sure many of them are absolutely frustrated by telling patients they just have to deal with their tinnitus. A lot of ENTs are participating (and will be the eventual people who administer) the AM-101 trials. There are open minded people out there, but there are a lot of people who aren't too.

@Hudson I'm sure some ENTs do care, but most don't keep up with tinnitus research. They are more concerned with doing procedures, and thus far there are no procedures for tinnitus.

This will all change once AM-101 gets approved, especially if the procedure gets insurance coverage.

I don't enjoy speaking negatively about the medical community. I'm part of it. But I saw two of the absolutely best neurotologists. Both were Ivy-league trained and department heads at two large universities. Neither appeared to know more about tinnitus than my family practice doctor. The only difference between them and my family practice doctor was the latter actually cared. She thought my suffering and tinnitus were important.

In other words, I was more than a CPT code.

 

[Golly]

The doctor I visit with some regularity (about once a quarter) is a psychiatrist and a Fellow of the Academy of Psychosomatic Medicine. Over the last few years, he has been very accommodating in terms of medications I have been curious about. Perhaps the feature that makes him so understanding is that he himself has had tinnitus for years!

-Golly

 

[Grace]

Amen to that. Both ENT's I went to in Salzburg were useless. None of them listened to me for more than 30 sec, before interrupting me, explaining to me what tinnitus is. I was like, dude, I've had this for 13 years, I'm not a kid, I know what I'm dealing with.

Ha same with my ent ANDDD i told him i got it from drums and loud amp and he said ohh well you didnt wear earplugs thats why well duhhh then he told me to continue to play and that my T will never get worse as long as i protect... Which is not true also!!!!!

 

[Grace]

@Hudson I'm sure some ENTs do care, but most don't keep up with tinnitus research. They are more concerned with doing procedures, and thus far there are no procedures for tinnitus.

This will all change once AM-101 gets approved, especially if the procedure gets insurance coverage.

I don't enjoy speaking negatively about the medical community. I'm part of it. But I saw two of the absolutely best neurotologists. Both were Ivy-league trained and department heads at two large universities. Neither appeared to know more about tinnitus than my family practice doctor. The only difference between them and my family practice doctor was the latter actually cared. She thought my suffering and tinnitus were important.

In other words, I was more than a CPT code.

how much you bet when am101 or any tinnitus drug is approved that ents will still do there whole live with it thing and not believe in perscribing there patients hope that something can turn this thing down. Its always been live and learn with it so i dont think most of them in there heads are even expect any treatments for it.. Except for the ones that care.

 

[Telis]

Well I guess I can't get Retigabine in Canada according to my doc.

I can get the prescription but can't have it filled.

Anyone have any ideas?

I phoned around...shoppers and a few other pharmacies and no one seems to know what retigabine is.

 

[Golly]

Well I guess I can't get Retigabine in Canada according to my doc.

I can get the prescription but can't have it filled.

Anyone have any ideas?

I phoned around...shoppers and a few other pharmacies and no one seems to know what retigabine is.

Apparently, Retigabine (generic name) is branded as Potiga in Canada. -G

 

[Telis]

Apparently, Retigabine (generic name) is branded as Potiga in Canada. -G

I have asked for it by the name Potiga, can't seem to find it. Guess I will keep phoning around

 

[Golly]

I have asked for it by the name Potiga, can't seem to find it. Guess I will keep phoning around

Try asking for Ezogabine. I believe that is another generic name for Retigabine.

-Golly

 

[Telis]

Try asking for Ezogabine. I believe that is another generic name for Retigabine.

-Golly

Will do, thanks

 

[benryu]

Will do, thanks

I checked a couple of pharmacy in Montreal for Potiga, and they could all order it. *__*
But I don't have the prescription yet lol

 

[RaZaH]

@Mpt for how long did you have T before trying this drug ?

 

[Mpt]

5 months

 

[RaZaH]

"the only sound I could hear was the quiet breathing of my wife as she slept"

OMG.... How much I would give for just a few minutes of that.

Called my Doc , he is willing to give this to me , now I just have to cross my fingers and hope it's available here in Iceland , which is unlikely .

 

[Zimichael]

Hey guys...Sorry this is a bit of a backtrack and not "Retigabine", but I can't but help notice the "T ignorance outrage" comments regarding ENTs and such, back on this thread.

So please help me with this: https://www.tinnitustalk.com/threads/a-911-help-i-have-tinnitus-idea-and-need.5536/

I want to have a ready made document I can print out or email to these idiots so that poor suckers like us can maybe NOT go through this when they first get T and look for "professional" (sic) help!!!

Ta much, Zimichael

 

[RaZaH]

@Mpt Sorry for all the questions but can you tell me :
Does this drug have any "effects" ? Like benzo type , druggy stuff ?
Do you know if its hard to taper off or if its addictive etc ?

Thanks mate.

 

[Mpt]

Hi hazar,

I don't plan on tapering off anytime soon, but I tapered onto it, and I would taper off if I ever stop taking it... The only thing I've noticed is I feel a little more tired in the evenings than usual, but not too bad, never tired during the day, etc

 

[caffclifton]

@Mpt has your T still gone? Are you planning on coming off it to see if it still works? Thanks

 

[RaZaH]

Cool, being tired in the evening would be welcome for me so I am all set.
Couldnt find it over here but my Dr will sort this out for me.
Luckily I have that dude in my corner.

If it works for me I will probably try stopping to see what happens.
Although, having said that ...If it works I might not want to gamble with that.
We´ll see.

 

[Mpt]

Yeah... It's pretty much gone, based on my time on this board I estimate that my tinnitus, while not as bad as the worst cases here is/was at a minimum worse than 80% of the people on this site... I literally heard it every second of everyday except for standing in the shower, of course as I habituated I would go for maybe a few minutes at most when really engaged in an activity where I wasn't concious of hearing it, but that was it... Yesterday I heard it for a few seconds with my ear on a pillow and that was it, I sat in a quiet room tying fishing flies last night for about 3 hours and heard nothing the whole time... I feel like I literally have been given a second chance at a normal life

 

[caffclifton]

Do you think you will try and come off it to see if it's had a lasting effect as I have read the side effects can be quite damaging for long term use. Just wanted to know so I can speak to my doctor. Thabks