Retigabine (Trobalt, Potiga) — General Discussion

#7,561
Ok. So it's based on the individual with not much if any predictability as to who it helps. So I may as well try it and find out!!

But my question is how much of that variability could be accounted for by varying doses. If that's the case could a non responded have been helped by a higher dose? Could those who have not responded not been taking the medication reliably?

Do we have any data on that? Or is it really just a crap shoot like you suggest?
 
#7,562
Richard zurowski said:
Well!! So there's ten different types of tinnitus. Like the common cold there's a dozen or more strains that cause it. And they can't even find a cure for a cold so what are the chances that they will find a cure for tinnitus ?
Click to expand...
The common cold is a virus and T is a symptom,can't really compare the two.But if we were to compare them for arguments sake look at it like this,although we can't cure the common cold we can alleviate the symptoms.Although we can't cure the underlying cause usually hearing loss hopefully we can alleviate the symptoms,T and H being the symptoms we want alleviated.
 
#7,563
MPT and a few others put this drug on the map for tinnitus treatment. I wonder how much GSK paid them? One of the most corrupt pharmaceutical companies around and no one questions this!!! Haha. Fuck it's sad the suckers we become when we suffer. No need for a cure to produce $$$$$$, we will buy anything and everything based on a few lame ass Internet testimonials.

Please take a look:

http://anhinternational.org/2013/04...es-how-dissent-is-controlled-on-the-internet/
 
#7,565
dj_newark said:
I've had tinnitus for about 26 years. And I just got my doctor to write a prescription for a 30 day supply of Potiga at 100mg each.

It's not much. He says that he wants to ramp me up slowly and monitor the effects. I'd like to get up to 300mg at 3x per day like MPT has.

But what I want to know is if there is any history of this helping someone who's had tinnitus for a really long time? I read that MPT has had it for 5 months before it started helping.

Any ideas there?

Thanks
Click to expand...


What you dont understand, and what we dont have a doctor here to explain, there is so many different types of tinnitus.

What is the point of explaining to those who think that tinnitus is something simple. Tinnitus is actually huge problem. Like a cancer... do you cure cancer so easy, how many types there are, good slow growing, progressive, skin, breast prostate, .... same is with tinnitus. Tinnitus is located above shoulder blades up to top of the head. Pinched nerves, wisdom teeth, meniere , infections, penetrated eardrums, many courses like in cancer, and also many different types. Retigabine is bad medicine. It did help me 4 months BUT you have to know I accepted to stay crippled with trobalt, who made me lose mental capacity. Even today I wake up crying about my studies and my life, and when i try to remember i know i forgot a lot and i was never able to make long term memory under trobalt. To be honest I don't know will my brain ever be able to be what was it, but that is not important as my tinnitus made shure my life will never be what it was.

To all of you who have tinnitus I say one thing that dr. Jeanmonod said: there is no GOLDEN BULLET. There is no pill or treatment and t i forever away. Some people louse tinnitus for some reasons, but huge majority keeps it for a rest of life. Medicine is trying to make progress into "deciphering" tinnitus, put it in categories. And then if you fall in group and your brain scans show you fall in group they will try treatment suitable for your tinnitus.

Tinnitus is like a car, every company makes their own spare parts, and it is in different shape, yes we sit, drive it works in principal same, but they are totally different.

There were people who got better after stimulation of auditory cortex, then doctors in Belgium done implants, and patients who had same questionnaires, same EEG same symptoms had positive result but then they put in implant in some of the same group and there is no effect whatsoever.

We lost that Autifony AUT063, but if you look at it now, that medicine had maybe effect on 25% of people, so 28 patients who got drug, 28 who got placebo.... then test show it is effective in 7 people, but placebo is also effective in (as I was told by a doctor) 30% cases, so then you get result medicine is ineffective.

Medicine was effective only to one group, of one type and certain subtypes of tinnitus.

What TRI is trying to do is to categorize types of tinnitus and symptoms, and then apply medicine that is effective for that group in hope it will work.

There is no simple cure for tinnitus, nor I believe it will ever be in next many many years, until we decipher brain and we know all about it, but now we know 10-15% of brain.

The only thing is that trobalt works on some, on other not. Trobalt is dangerous medicine that will take your memory and emotions and ability to function together with tinnitus.

So it is simple, no golden bullet. But there are treatments that can try lo lower suffering, for some people it is to make tinnitus not intrusive to attention center, to another is to make sound lower and so on, and those treatments are the one that are right now a hope.

Worst is when you have progressive tinnitus, like i have that gets new tones, volumes every few months, and on and kills you. Lucky are those who get t that stay same for 10 years.

Anyway i just tried to explain that trobalt is not cure for all tinnitus types and subtypes, and it is not cure but it can help , and take away memories and other things you value...

tinnitus has no cure.
 
#7,566
You obviously have no idea who you're talking to. Thanks for assuming "what I understand" about my condition. Given that we've never met.

I have absolutely no idea if the Trobalt can help me. It's a shot in the dark. Like all of the tinnitus treatments that I try I go into them EXPECTING failure and expecting to suffer this way for the rest of my life. But if I have to keep trying to find relief. No one could go on this way forever.

I actually went through the Microtransponder trial up in Buffalo NY. I was the first person in the US to have a vagus nerve stimulator implanted for the purpose of treating tinnitus. I've been doing the 2.5 hour treatments every day (sometimes 2 or 3 times a day) where I listen to tones through headphones paired with nerve stimulations with the device.

I've been traveling to Buffalo from NJ every 3 months to alter the treatment protocol. It's never done anything to relieve my tinnitus. For well over two years.

Last February I went to a tinnitus clinic in Montreal and got a form of acoustic nueromodulation therapy that I listen to on my iPhone 3 times a day for 45 minute sessions. I do that in addition to the microtransponder on a daily basis.

I understand that this condition is highly variable from individual to individual. If mine wasn't unusually powerful and strong I assure you I wouldn't be behaving like this.

And then there is the discovery that they made that tinnitus involves way more of the brain than researchers previously supposed:

http://www.foxnews.com/health/2015/...y-brain-network-responsible-for-tinnitus.html

So yeah. I get it. There's no cure for tinnitus. All I can hope is that the Trobalt can help in some way. But I walk into this with the full realization that's it's a shot in the dark.
 
#7,567
@dj_newark

dont take it personally, christian78 has a hard time expressing him since he has been totally destroyed by the severeity of his condition. It is just the way he writes. It can come over as offensive.

I have the same progressive kind of T with about 10 different loud always changing reactive sounds + hyperacusis and vibrating sounds (+ hearing loss) It is impossible to live like this. Every day is a torture and it is progressing. Fortunately for 99,9999% of people who will get T, they wont get that kind of severity. Constant, never changing T is almost a good thing. I had that for many years

As for Trobalt and extreme T.
I wanted to write "dont bother with trobalt after 26 years" but then I checked out your other posts (unlike christian) and you have debilitating T too, so you can give it a try. Check my profile info link for my trobalt experience with extreme T if you like. I got one positive post linked...but then it became useless after a time and the effects were reversed.
It can provide relief to a point.

thanks for sharing your experience with microtransponder and severe T...1,5years ago I was writing emails to them from Germany asking them when VNS is coming to germany and they were like "6 months", I was having big hopes for VNS. Guess thats it. Seems it never really took off, same as the De Ridder Crew in New Zealand. Disappointing.

Stem cell therapy seems like the best shot if one got the money. Even if there are only like 2 experiences of stem cell therapy on this board here.
 
#7,568
I'm giving the MT one final chance. Then if it doesn't help in the coming months, when I go back to Buffalo in August they're going to change strategy in a radical way.

Now what I do is use a laptop they gave me that controls the VNS device and is programmed to play tones through headphones. The tones are outside the range of my dominant frequency. The VNS device sends pulses of electricity up my vagus nerve to coincide with the tones I am hearing. The electrical charge to the vagus nerve is supposed to release chemicals in the brain that "enhance learning". The process is supposed to teach the brain that the sounds it's generating are not "real" and make them go away.

I've heard there were some dramatic success stories with the program. All I know is that I wasn't one of them.

This August if the MT still isn't helping me, the plan is to switch the VNS device into "always on" mode which they also call "Cyberonics mode". That way they say they can use the MT to work with the limbic system to control how my body reacts to the disease. And to pair that with some more conventional sound therapies with sound generating hearing aids and cognitive behavioral therapy.

I'm also going to try using the Potiga to try and help my symptoms.

But I don't have high hopes for any of that. I'm pretty sure I'm going to be this way for the rest of my life. And that is a terrifying prospect.
 
#7,570
snow86 said:
@dj_newark

dont take it personally, christian78 has a hard time expressing him since he has been totally destroyed by the severeity of his condition. It is just the way he writes. It can come over as offensive.

I have the same progressive kind of T with about 10 different loud always changing reactive sounds + hyperacusis and vibrating sounds (+ hearing loss) It is impossible to live like this. Every day is a torture and it is progressing. Fortunately for 99,9999% of people who will get T, they wont get that kind of severity. Constant, never changing T is almost a good thing. I had that for many years

As for Trobalt and extreme T.
I wanted to write "dont bother with trobalt after 26 years" but then I checked out your other posts (unlike christian) and you have debilitating T too, so you can give it a try. Check my profile info link for my trobalt experience with extreme T if you like. I got one positive post linked...but then it became useless after a time and the effects were reversed.
It can provide relief to a point.

thanks for sharing your experience with microtransponder and severe T...1,5years ago I was writing emails to them from Germany asking them when VNS is coming to germany and they were like "6 months", I was having big hopes for VNS. Guess thats it. Seems it never really took off, same as the De Ridder Crew in New Zealand. Disappointing.

Stem cell therapy seems like the best shot if one got the money. Even if there are only like 2 experiences of stem cell therapy on this board here.
Click to expand...

Thank you, I suppose he did understood me. I never said nothing except there is not 100% pure cure, like, for example antibiotic for chlamydia and it is gone. We speak about treatments and attempts to lower and name tinnitus better understood before there can be some treatment. There was huget conference that ended start of april this year, people are trying to categorise tinnitus before attempting to treat is.
 
#7,571
dj_newark said:
You obviously have no idea who you're talking to. Thanks for assuming "what I understand" about my condition. Given that we've never met.

I have absolutely no idea if the Trobalt can help me. It's a shot in the dark. Like all of the tinnitus treatments that I try I go into them EXPECTING failure and expecting to suffer this way for the rest of my life. But if I have to keep trying to find relief. No one could go on this way forever.

I actually went through the Microtransponder trial up in Buffalo NY. I was the first person in the US to have a vagus nerve stimulator implanted for the purpose of treating tinnitus. I've been doing the 2.5 hour treatments every day (sometimes 2 or 3 times a day) where I listen to tones through headphones paired with nerve stimulations with the device.

I've been traveling to Buffalo from NJ every 3 months to alter the treatment protocol. It's never done anything to relieve my tinnitus. For well over two years.

Last February I went to a tinnitus clinic in Montreal and got a form of acoustic nueromodulation therapy that I listen to on my iPhone 3 times a day for 45 minute sessions. I do that in addition to the microtransponder on a daily basis.

I understand that this condition is highly variable from individual to individual. If mine wasn't unusually powerful and strong I assure you I wouldn't be behaving like this.

And then there is the discovery that they made that tinnitus involves way more of the brain than researchers previously supposed:

http://www.foxnews.com/health/2015/...y-brain-network-responsible-for-tinnitus.html

So yeah. I get it. There's no cure for tinnitus. All I can hope is that the Trobalt can help in some way. But I walk into this with the full realization that's it's a shot in the dark.
Click to expand...

I DO WELL KNOW TO WHOM I SPEAK HERE! So that said most of the people don't know that there is several different forms of tinnitus, my tinnitus is not at all in auditory cortex, both of them are not hyperactive, while center for attention is and he is sending impulses to auditory cortex and activate it.

You maybe know some of this but others don't. What i said was informative and non aggressive. Considering me you can do whatever you want, take 1000 gr of trobalt at once and die if you want, or don't take none. It is your problem. I did not prohibit you nothing, you are one responsible for your tinnitus and your choices.

Don't try to leash it on me becouse you have pain, take some tranquilizer before you come and start being aggressive.

You do what you want it is your choice. I did not direct my answer to you but majority so they understand, becouse it was believe AUT063 will cure all and that is but it failed and now actually we know it would never work for everyone.
 
#7,572
I don't know why the micro transponder didn't work on me. But my guess is that I'm really bad at identifying my tinnitus tones, because I have many. The treatment targets your dominant tone, and it's hard for me to determine what that dominant tone is.

I am in contact with the company. But not any of the individuals who succeeded because that information is confidential. All they would say is some had no improvement, a few had mild improvement and there were at least a couple cases of dramatic improvement.

God I hope the Potiga can help me because I need relief from this so I can function in the world.
 
#7,573
Christian78 said:
I DO WELL KNOW TO WHOM I SPEAK HERE! So that said most of the people don't know that there is several different forms of tinnitus, my tinnitus is not at all in auditory cortex, both of them are not hyperactive, while center for attention is and he is sending impulses to auditory cortex and activate it.

You maybe know some of this but others don't. What i said was informative and non aggressive. Considering me you can do whatever you want, take 1000 gr of trobalt at once and die if you want, or don't take none. It is your problem. I did not prohibit you nothing, you are one responsible for your tinnitus and your choices.

Don't try to leash it on me becouse you have pain, take some tranquilizer before you come and start being aggressive.

You do what you want it is your choice. I did not direct my answer to you but majority so they understand, becouse it was believe AUT063 will cure all and that is but it failed and now actually we know it would never work for everyone.
Click to expand...
OK
 
#7,574
dj_newark said:
OK
Click to expand...
Thank you, I am sorry if I made you angry. we all suffer....

this morning it happen that i ... well i take trobalt and it makes me have kidney stones. As when i was coming back from Belgium on saturday i carried heavy comp and luggage, ca 30 kg and that mostly prompt kidney stone to move. Trobalt makes them quite often. And last night was so painful. I cant take any medicine for pain becouse t gets worse, but I took spasmex to relax spasms. And I was in hot water, very hot, and nothing helped, and I took 300mg more trobalt ( i take mostly daily only 300 for sleep), and i fell a sleep by sitting (from trobalt again)

on the end i woke this morning and t was hard , i slept 4h... i took 2mg clonazepam + 50mg trobalt and i got painless day and my tinnitus right now DON'T EXIST, I MEEN in silent room it is lvl 1.

I don't know to whom or what to thank for it, it has passed 8h in total silence... incredible... you know you never thing you will get one more tinnitus free day but it happens, or maybe those treatments in Belgium helped... I cant know
 
#7,576
Christian78 said:
Thank you, I am sorry if I made you angry. we all suffer....

this morning it happen that i ... well i take trobalt and it makes me have kidney stones. As when i was coming back from Belgium on saturday i carried heavy comp and luggage, ca 30 kg and that mostly prompt kidney stone to move. Trobalt makes them quite often. And last night was so painful. I cant take any medicine for pain becouse t gets worse, but I took spasmex to relax spasms. And I was in hot water, very hot, and nothing helped, and I took 300mg more trobalt ( i take mostly daily only 300 for sleep), and i fell a sleep by sitting (from trobalt again)

on the end i woke this morning and t was hard , i slept 4h... i took 2mg clonazepam + 50mg trobalt and i got painless day and my tinnitus right now DON'T EXIST, I MEEN in silent room it is lvl 1.

I don't know to whom or what to thank for it, it has passed 8h in total silence... incredible... you know you never thing you will get one more tinnitus free day but it happens, or maybe those treatments in Belgium helped... I cant know
Click to expand...

Ok thanks. I rather admit it's difficult to remain civil when such a horrendous condition dogs at us all the time. I apologize if I didn't come across in a good light either.

So you're saying that the Trobalt does relieve your T? Sounds like it's intermittent relief. But heck, any relief at all is great by me.

May I ask how long you've had your tinnitus? My big fear is that I've had the T for so long that nothing at all can help.

You mention another treatment you received in Belgium. To what do you attribute your moments of silence?

To the Trobalt? Or to the treatment from Beligium? Perhaps both?

May I ask what treatment you received there in Belgium?

Thanks,
Tim
 
#7,581
dj_newark said:
Ok thanks. I rather admit it's difficult to remain civil when such a horrendous condition dogs at us all the time. I apologize if I didn't come across in a good light either.

So you're saying that the Trobalt does relieve your T? Sounds like it's intermittent relief. But heck, any relief at all is great by me.

May I ask how long you've had your tinnitus? My big fear is that I've had the T for so long that nothing at all can help.

You mention another treatment you received in Belgium. To what do you attribute your moments of silence?

To the Trobalt? Or to the treatment from Beligium? Perhaps both?

May I ask what treatment you received there in Belgium?

Thanks,
Tim
Click to expand...


In belgium I received TDCS + some DTCS with noise, and rTMS on a spot where loreta eeg showed overactivity, I avoid trobalt these day, but i have in stock as i take it regularly from pharmacy, mostly i take 300mg before sleep... but well i got used that this think is progressive, it is 4-5 times worse than 2,5 years ago but... what should i do, there is not cure, so i can try to find my own help...

As I am romantic, the old type, the one that are extinct I do enjoy love, and romance and that kills tinnitus...
 
#7,583
Christian78 said:
In belgium I received TDCS + some DTCS with noise, and rTMS on a spot where loreta eeg showed overactivity, I avoid trobalt these day, but i have in stock as i take it regularly from pharmacy, mostly i take 300mg before sleep... but well i got used that this think is progressive, it is 4-5 times worse than 2,5 years ago but... what should i do, there is not cure, so i can try to find my own help...

As I am romantic, the old type, the one that are extinct I do enjoy love, and romance and that kills tinnitus...
Click to expand...

God! You Europeans are so much more advanced than us Americans in treating T. Wish I had these resources near me. I do however have a foc.us v2 cranial stimulator that I use with tRNS.

I do a treatment called PAXX-100 from a tinnitus clinic in Montreal. I do that 3 to 4 times a day. I do one session per day with the tRNS.

Then I do one 1.5 hour microtransponder session. I'll do 2 or 3 of those on weekends when I'm not working. They recently changed the treatment duration from 2.5 hours to 1.5 hours.

And now I'm adding Trobalt to the mix, and researching dosage levels.

How long have you had your tinnitus?
 
#7,584
#7,585
dj_newark said:
God! You Europeans are so much more advanced than us Americans in treating T. Wish I had these resources near me. I do however have a foc.us v2 cranial stimulator that I use with tRNS.

I do a treatment called PAXX-100 from a tinnitus clinic in Montreal. I do that 3 to 4 times a day. I do one session per day with the tRNS.

Then I do one 1.5 hour microtransponder session. I'll do 2 or 3 of those on weekends when I'm not working. They recently changed the treatment duration from 2.5 hours to 1.5 hours.

And now I'm adding Trobalt to the mix, and researching dosage levels.

How long have you had your tinnitus?
Click to expand...
what is tRNS? my t is from september 2013
 
#7,586
Yes I have a VNS implant for tinnitus. I went through the microtransponder trials and I still use it.

The people at microtransponder have been incredibly humane and wonderful to deal with. Helping me and treating me far longer than anyone should have a right to expect.

I have a laptop that they have me that plays tones through headphones that are outside what they've determined to be my dominant tinnitus tone. The tones coincide with electrical pulses that come from the implant. The current treatment sessions are 1.5 hours long
 
#7,587
Christian78 said:
what is tRNS? my t is from september 2013
Click to expand...

Ok thanks.

tRNS is trans cranial random noise stimulation. It's a different cranial stimulation strategy that they've found more effective for tinnitus treatment. The "noise" is electrical noise, not noise as in actual sound.

You can find the device I use here:

http://foc.us/

Cool device! But as I said I have yet to find a treatment that actually works for me.
 

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