Retigabine (Trobalt, Potiga) — General Discussion

[Telis]

Let me know how u convince your doctor. I would like to do the same.

Will do

 

[RichL]

no I'm not fake, I have posted over 100 messages since january, and in a number of them I'm sure my desperation is palpable... Phillip 83... it varied but 90% of the time it was tonal, about 4hz and I heard it 99% of the time, I would also get a reactive shearing sound when exposed to loud noise

Sweet, some pretty notable endorsements MPT , I haven't followed your posts before, but now I have taken the time to look, you do seem pretty legit!
Apologies if I may of offended!
Please keep updating, I will be following your progress with much interest.
Strange that this hasn't been looked at as a treatment before?

Rich

 

[Zimichael]

@Telis and @SoulStation ...I have seen a lot of docs over the years, and have a couple of "opinions" for you guys.

1. If your doc is so arrogant or "know-it-all" that he/she will not consider you opinion and considerations seriously...get another doctor. Especially with something you may well know more about than them! Like tinnitus for example. If you have been on this Forum for a while and educated yourself fairly thoroughly, I bet you know more of what's happening than 99% of GPs; 90% of plain vanilla Audiologists (who just do the 'hearing aid thing' and maybe think the few industry masker type products are it, etc.); and maybe 50% more than ENTs.

Yeah, OK, I am making up numbers, but they are not without basis I can assure you. For instance a new ENT moved to town and was "advertising" c/o the local hospital propaganda rag. I phoned last week to ask about her experience with tinnitus and hyperacusis. The assistant put me on hold. Then asked, what exactly I meant, as T was a somewhat common and untreatable condition which people got used to. Ummmmm.....I then said: "Well is she in touch with the Deep Brian Stimulation stuff going on down the road a bit at UCSF; or the Functional MRI stuff; or - etc., etc."...Hold. Wait. "Well no, her thing is sinus infections."....."OK. Thank you, and I think I will skip making an appointment. Bye."
Same with three local Audiologists...as was also asking if they knew of any tinnitus support groups in the area or if had had any patients who may have mentioned wanting one. Blank! [Maybe things are better in the Big City?!]

Anyway, I hope you get my point.

2. I have found that unless you come out with plain wacko stuff ("Doctor, these black helicopters are coming out and they are watching me. But only at night, when there's no moon and it's so dark you can't see them!"), that docs - well good docs - will listen and consider what you are saying. Especially if you sort of demand it! After all you are the one paying for the visit right?
This may take a bit of assertiveness at first, but it's not long after that the docs I have had are writing scrips based on my suggestions not theirs. Or at least after mutual discussion and consent.
In a way, it can 'lighten their load' as you are sharing the responsibility and they (being human) may have some subtle sense of relief at that. They don't have to play "God", etc. - what a break!

Of course, if a # 1. type doc, the "God" status is too ingrained...Fire them.
Hopefully you have other choices and you don't live in an Arctic refuge 500 miles from a town of 100 people. If so, ignore my comments - you may need that doc for some mundane thing like a cold.

Good luck. Go for it!... Zimichael

 

[Mpt]

an update... i did hear it briefly last night for a few seconds, this is the first time I have heard it without fingers in my ears for a week or so, just checked now and even with fingers in ears I hear nothing, the sound I heard last night wasn't loud at all, heard it while in my garage as I was examining a hornets nest on the ceiling, very quiet in there... of course I would prefer to never hear anything, but if I had to hear that sound once a week for a few seconds, or even a few seconds once a day for the rest of my life I wouldn't particularly care

 

[Grace]

an update... i did hear it briefly last night for a few seconds, this is the first time I have heard it without fingers in my ears for a week or so, just checked now and even with fingers in ears I hear nothing, the sound I heard last night wasn't loud at all, heard it while in my garage as I was examining a hornets nest on the ceiling, very quiet in there... of course I would prefer to never hear anything, but if I had to hear that sound once a week for a few seconds, or even a few seconds once a day for the rest of my life I wouldn't particularly care

Maybe fleeting T? Its normal!

 

[robs]

Color me intrigued! I've had T for a little over 2 weeks and I'm ready for it to go. Will be watching this thread very closely. @Mpt , please keep us updated!!

 

[Telis]

Color me intrigued! I've had T for a little over 2 weeks and I'm ready for it to go. Will be watching this thread very closely. @Mpt , please keep us updated!!

2 weeks might be an ideal time to try this....I'm hoping I'm not too late at 7 months.

 

[benryu]

2 weeks might be an ideal time to try this....I'm hoping I'm not too late at 7 months.

No you're not time is only important for the inner ear, hair cells die quickly after an acoustic trauma, generaly you want to use corticosteroid to help, but for the potassium channels that are activated by the retigabine, most recent scientific publications demonstrate that time is not a factor.
The auditory system of a T. sufferer is normal, it's just locked in a certain state if I simplify it very much. Plasticity may create inertia over the time, but it is very (very) likely reversible
Chin up dude !

 

[Telis]

No you're not time is only important for the inner ear, hair cells die quickly after an acoustic trauma, generaly you want to use corticosteroid to help, but for the potassium channels that are activated by the retigabine, most recent scientific publications demonstrate that time is not a factor.
The auditory system of a T. sufferer is normal, it's just locked in a certain state if I simplify it very much. Plasticity may create inertia over the time, but it is very (very) likely reversible
Chin up dude !

Thanks man. Yeah kinda hanging my hopes on this for now.

 

[dan]

an update... i did hear it briefly last night for a few seconds, this is the first time I have heard it without fingers in my ears for a week or so, just checked now and even with fingers in ears I hear nothing, the sound I heard last night wasn't loud at all, heard it while in my garage as I was examining a hornets nest on the ceiling, very quiet in there... of course I would prefer to never hear anything, but if I had to hear that sound once a week for a few seconds, or even a few seconds once a day for the rest of my life I wouldn't particularly care

Keep us updated for any changes. (I hope there wont' be any)

 

[benryu]

Thanks man. Yeah kinda hanging my hopes on this for now.

Retigabine is not a miracle cure and has not been tested for T., it just acts in the neighbourhood of the AUT00063, and like lidocaine but for different reasons it can help some people with T.

But is NOT specific enough to be viable on the long term.

In simple words Retigabine is like trying to hydrate yourself with beer, there's water into it, it will overall hydrate you a little bit despite the alcool dehydration but it's not as viable as simple water, see what I mean ?

 

[dan]

I wonder why Retigabine has never been tested for tinnitus!
Its been around since 2010.
I remember when the ATA funded a Campral tinntius human trial - a drug used for alcoholism...and of course it failed since its not even close to potassium modulation.
Now that they have these new drugs which have very good rat model results, the ATA doesn't do anything, while in Australia they are doing some MDMA tinnitus trials - yeah like we're all gonna take Ecstacy for tinnitus.
What's going on here?
Why is the only potassium channel trials are with Autifony.

 

[benryu]

I wonder why Retigabine has never been tested for tinnitus!
Its been around since 2010.
I remember when the ATA funded a Campral tinntius human trial - a drug used for alcoholism...and of course it failed since its not even close to potassium modulation.
Now that they have these new drugs which have very good rat model results, the ATA doesn't do anything, while in Australia they are doing some MDMA tinnitus trials - yeah like we're all gonna take Ecstacy for tinnitus.
What's going on here?
Why is the only potassium channel trials are with Autifony.

It was scientifically confirmed only in 2013 that potassium channels were directly related to T., some older articles made the suposition that it was linked to that, but without never really being able to exactly know why. The drug was approved in 2010 (2011 in europe) but has slowly penetrated the market, especially since FDA put a safety alert on this drug for long term users.

If I were at the ATA I would also have been really careful with that.

 

[benryu]

I wonder why Retigabine has never been tested for tinnitus!
Its been around since 2010.
I remember when the ATA funded a Campral tinntius human trial - a drug used for alcoholism...and of course it failed since its not even close to potassium modulation.
Now that they have these new drugs which have very good rat model results, the ATA doesn't do anything, while in Australia they are doing some MDMA tinnitus trials - yeah like we're all gonna take Ecstacy for tinnitus.
What's going on here?
Why is the only potassium channel trials are with Autifony.

Extra comment, for the MDMA, it just releases all the serotonin you have in your brain at once. The serotonin is a potassium channel modulator.
I am sure I don't have to say more for you to understand

To re-use my beer metaphor:

In simple words Retigabine is like trying to hydrate yourself with beer, there's water into it, it will overall hydrate you a little bit despite the alcool dehydration but it's not as viable as simple water, see what I mean ?

MDMA is drug is like trying to hydrate yourself by pooring a pint of beer on the top of your head...

 

[Telis]

To be honest, I don't really understand the technicals of what this drug does. Reading, concentrating are done for me. I can barely watch a no mind movie these days and keep up. I just need to try something, anything.

Mpt said this works for him so I will give it a shot. I'm desperate and will try pretty much anything.

I see my doc tomorrow at 2, I will keep everyone posted.

 

[lapidus]

Awesome explanations @benryu

 

[Telis]

So my doctor has agreed to let me try Trobalt, although getting a hold of it my pose a problem. He phoned a couple of pharmacies and they had no idea. He did however say he would try and find it. I'm hoping in the next couple of days I will get an answer.

 

[benryu]

So my doctor has agreed to let me try Trobalt, although getting a hold of it my pose a problem. He phoned a couple of pharmacies and they had no idea. He did however say he would try and find it. I'm hoping in the next couple of days I will get an answer.

I should get mine on Friday, but the doctor wants me to starts 4 days with corticosteroids.

 

[Telis]

I should get mine on Friday, but the doctor wants me to starts 4 days with corticosteroids.

Nice...Why the corticosteroids to start?

 

[RaZaH]

I cannot wait to hear how this goes , calling my doc tomorrow and seeing if this is available here in Iceland.

 

[JAKUB]

Good luck! Fingers crossed!

 

[rtwombly]

Bit bizarre to be trying steroids now, but I guess the doctor is trying what he knows before charting unknown territory.

I'm hoping to talk to my neurologist about Retigabine when I get back from vacation. It'd be worth it for me to try something even if it's not long term. I've spent the better part of the last six months trying various therapies. If I knew a pharmacological approach could be effective, I wouldn't feel the need to keep chasing alternatives.

 

[SoulStation]

I should get mine on Friday, but the doctor wants me to starts 4 days with corticosteroids.

How did u convince your doc? Did you present evidence?

 

[SoulStation]

So my doctor has agreed to let me try Trobalt, although getting a hold of it my pose a problem. He phoned a couple of pharmacies and they had no idea. He did however say he would try and find it. I'm hoping in the next couple of days I will get an answer.

How did you convince your doc ? Did you show him evidence?

 

[Telis]

How did you convince your doc ? Did you show him evidence?

Hey SoulStation. Yes I did present some evidence. Handed him a couple of print outs on autooo63 and retigabine, then asked him what he thought. He scanned through and said that he had never heard of retigabine but he was open to giving it a shot.

Before I handed him any info or suggested this route, I gave him a LONG run down on what I have tried and how this condition has affected my life. I believe he was very open minded after hearing my entire story.

 

[benryu]

Nice...Why the corticosteroids to start?

Not a clue lol, I was just happy he agreed I did not ask, I still have to go through an ENT again to check a few things.

 

[RichL]

Can't wait to hear how you guys go on this, in the mean time I will see if it's available here in NZ!

 

[benryu]

How did u convince your doc? Did you present evidence?

This is my doctor, he's been following me for nearly 5 five years now, he knows I am a reasonable person, he knows my background, and I just went there, told him very simply that it got worse recently.
Then I told him that we both know there is not much to do yet, but I have a friend who had some improvements with Potiga. (did not tell him that it was an online friend that I never met, but fuck it, just a technicallity lol)

I told him that I know that patients should not come with ready made solutions, but the risk to try a few weeks potiga are very limited as I am healthy as fuck and if there is no improvement I will be the first one to stop taking the drug.

And even if it doesn't work I rather feel disapointed than regretful. Plus if it works on me, it may help another patient.

He said, "ok but we are going to do it my way, you will start with some more classic treatment for accute T. increase, 4 days of steroid, you will also do full a check up with an ENT and only then you will carefully try the potiga."

He took his phone, call the ENT directly, and he got me an appointment the next day.

So I had the appointment today with the ENT, he was really bad, and I have to come back tomorrow for a few more tests, then on friday I should get my dope, hopefully lol

 

[RichL]

Apologies if this link has already been added to this thread but just in case it hasn't.......http://www.ema.europa.eu/docs/en_GB...port_-_Variation/human/001245/WC500145737.pdf

 

[SoulStation]

Thanks so much Telis ! Is there any way you could link me to the info you printed out if you have a chance? I wish you the best of luck and hope that you see positive results soon!

Hey SoulStation. Yes I did present some evidence. Handed him a couple of print outs on autooo63 and retigabine, then asked him what he thought. He scanned through and said that he had never heard of retigabine but he was open to giving it a shot.

Before I handed him any info or suggested this route, I gave him a LONG run down on what I have tried and how this condition has affected my life. I believe he was very open minded after hearing my entire story.