Retigabine (Trobalt, Potiga) — General Discussion

[Danny Boy]

I know you understand. I remember reading your initial posts. You worried a lot of the members of this forum, but they were giving you good feedback and support. I'm truly glad you found relief.

I was practically on the verge of death. It's thanks to tt and the great community we here, that I'm still here.

 

[Evian]

Danny how do you get Trobalt, in the UK , I assume GP and ENT's. Don't prescribe it for T & H?

 

[preslys]

Hi guys

My tinnitus is improving from day to day the neurons in my brain calm down

yesterday I increased the dose to 300 g and the results are more positive,for the first time since 05/2014 I heard total silence for one hour.

I regretted not trying it befor,don't believe if your doctor tell you go home and live with it

Try everything you can.

@nills ,@Zimichael ,@Danny Boy

how do you advise me ?

Further increasing the dose,decrease or stay at this level

 

[Danny Boy]

Hi guys

My tinnitus is improving from day to day the neurons in my brain calm down

yesterday I increased the dose to 300 g and the results are more positive,for the first time since 05/2014 I heard total silence for one hour.

I regretted not trying it befor,don't believe if your doctor tell you go home and live with it

Try everything you can.

@nills ,@Zimichael ,@Danny Boy

how do you advise me ?

Further increasing the dose,decrease or stay at this level

View attachment 7334

The max dosage is 400mgx3, but if 300x3 lowers it, stick to that.

 

[preslys]

@Danny Boy

now my dosage is 300*2 not 300*3
what do you think if I increase it to 300*3 ?

 

[Danny Boy]

@Danny Boy

now my dosage is 300*2 not 300*3
what do you think if I increase it to 300*3 ?

Just stick to a dosage that is as low as you can possibly get with benefits.

 

[papu]

My tinnitus is improving from day to day the neurons in my brain calm down

Happy for you, just curious did you get any side effects?

 

[preslys]

Happy for you, just curious did you get any side effects?

nothing yet
My GP advised me to do a break for a month every 2 months of use.
another GP tlod me that if I don't stop taking this drug now I will never stop it

 

[Danny Boy]

nothing yet
My GP advised me to do a break for a month every 2 months of use.
another GP tlod me that if I don't stop taking this drug now I will never stop it

Did it knock you out yet?

 

[preslys]

Did it knock you out yet?

Not yet danny boy
I find this drug very helpful but I have to take care from its side effect
when I finich my 80 tablets then I will see what I will do

 

[Danny Boy]

Not yet danny boy
I find this drug very helpful but I have to take care from its side effect
when I finich my 80 tablets then I will see what I will do

Fair enough. Glad it's helping.

 

[Evian]

Danny can you get the trobat in the UK or do you have to get it from Spain.

I'm new here so not sure where/if there is a pm facility

 

[Danny Boy]

Danny can you get the trobat in the UK or do you have to get it from Spain.

I'm new here so not sure where/if there is a pm facility

Spain. No doctor would give it to me.

 

[papu]

Preslys

I know is the same compound but i am just curious, which one are you taking Potiga or Trobalt?

 

[preslys]

Trobalt 200mg

 

[papu]

It is more than fair to conclude by reading the forums that trobalt has had some positive effect in the majority of people that have tried it. Be it mood enhancer and they cope better with their condition or actually reducing their tinnitus to lower tolerable levels. I think the future might be more towards sf0034 than autifony's drug. I know danny boy talk about this a while back (sf0034 trobalt with a flour molecule which reduces noticeably all side effects). Does anyone knows the current status of sf0034?

 

[papu]

nothing yet
My GP advised me to do a break for a month every 2 months of use.
another GP tlod me that if I don't stop taking this drug now I will never stop it

Its good to know that at least some people are not having noticeable side effects. Its like every drug, some people have them some don't. You have a very understanding GP most of them would not prescribe the drug. I think what he told you about taking a break every two months is sound advice, maybe you might not need it after one of them anymore. I would not read too much into the end of the world opinion of the second GP, it does not make any sense. People here have tried it and stop taking it whenever they want it to or because they run out and none of them died or spontaneously combusted.

 

[Evian]

Spain. No doctor would give it to me.

Thanks Danny, I have bought meds in Spain before that can only be got on a script here. But I've found the Spanish pharmacies a bit inconsistent, in that one will let you gave the drug and others won't. Seems a bit hit and miss.

Glad you managed to get some anyway, it's encouraging for others to see your success.

Wonder if there is a Spanish Tinnitus site where locals are trying it ?

 

[Danny Boy]

Thanks Danny, I have bought meds in Spain before that can only be got on a script here. But I've found the Spanish pharmacies a bit inconsistent, in that one will let you gave the drug and others won't. Seems a bit hit and miss.

Glad you managed to get some anyway, it's encouraging for others to see your success.

Wonder if there is a Spanish Tinnitus site where locals are trying it ?

Wouldn't have a clue. Wonder how many Spanish people have tinnitus?

 

[nills]

nothing yet
My GP advised me to do a break for a month every 2 months of use.
another GP tlod me that if I don't stop taking this drug now I will never stop it

can you elaborate on why your GP said this??

@Danny Boy

now my dosage is 300*2 not 300*3
what do you think if I increase it to 300*3 ?

I told you before you should take it 3 times a day ... why do people get advice and still just do whatever they feel is beyond me?? sorry but what is the use putting energy out when it just falls into a bottemless pit ... read the paper in the box ... it says in clear english it is 3 times a day. i`m sure you get relief but it doesn`t mean your doing it right.

and also please be clear in the things you say ... what do you mean increase to 3x300 ... tomorrow in a year?? ... how can we have solid information on this website if everything is written with so little care to the information and when good advicee is dismissed in one post and asked for in another ...

sorry that you get my bashing but all you need to know is in the box and in this thread and in the messages I sent you before ..

 

[Cheza]

People here have tried it and stop taking it whenever they want it to or because they run out and none of them died or spontaneously combusted.

@dan tried it and the drug caused him to have severe heart issues. He had to discontinue the drug, which is a real shame because his T is catastrophic level

 

[Christian78]

@dan tried it and the drug caused him to have severe heart issues. He had to discontinue the drug, which is a real shame because his T is catastrophic level

Danik tried, but his heart had problem, Viking had prostate problem, and me i have several problems but well pill helps me cope and i got it on prescription and well that is it. I sold some to @Danny Boy , he used it, he got better, pill helped him lover his tinnitus, but not permanently and not 100%...

Point is only what we choose this poison or other poison, @Silvio Sabo said that there will be medicine in 9 years, but it seems his t in so low, I don't think , well I am sure i will not live in 9 years with this tinnitus. Some other people can and have and etc, but some other will not. Remember the lady from Netherland, she cope 13 years but every little it got worse and worse, and as it seem from TT forum pool 80% people got tinnitus worse by time so... 9 years is too long for me.

btw I feel like in some protestant church where people pray for those who gave money, so it is like goldish letters have benefactors we ordinary black/blue. Not fair.

I started my process at Switzerland assisted suicide clinic because it may need several year to get it.

 

[dan]

Danik tried, but his heart had problem, Viking had prostate problem, and me i have several problems but well pill helps me cope and i got it on prescription and well that is it. I sold some to @Danny Boy , he used it, he got better, pill helped him lover his tinnitus, but not permanently and not 100%...

Point is only what we choose this poison or other poison, @Silvio Sabo said that there will be medicine in 9 years, but it seems his t in so low, I don't think , well I am sure i will not live in 9 years with this tinnitus. Some other people can and have and etc, but some other will not. Remember the lady from Netherland, she cope 13 years but every little it got worse and worse, and as it seem from TT forum pool 80% people got tinnitus worse by time so... 9 years is too long for me.

btw I feel like in some protestant church where people pray for those who gave money, so it is like goldish letters have benefactors we ordinary black/blue. Not fair.

I started my process at Switzerland assisted suicide clinic because it may need several year to get it.

Its true, one has to be in perfect or near perfect health in order to take Trobalt as it is so generalized acting affecting heart, kidney, sight, etc. Lets hope for Autifonys success, and Christian, 9 years??? If Autifony phase 2 is successful, i estimate we could get it in a couple of years tops. If its successful, we as a T community must push legislators/pharma for fast approval on compassionate grounds.

 

[Martin69]

Danik tried, but his heart had problem, Viking had prostate problem, and me i have several problems but well pill helps me cope and i got it on prescription and well that is it. I sold some to @Danny Boy , he used it, he got better, pill helped him lover his tinnitus, but not permanently and not 100%...

Point is only what we choose this poison or other poison, @Silvio Sabo said that there will be medicine in 9 years, but it seems his t in so low, I don't think , well I am sure i will not live in 9 years with this tinnitus. Some other people can and have and etc, but some other will not. Remember the lady from Netherland, she cope 13 years but every little it got worse and worse, and as it seem from TT forum pool 80% people got tinnitus worse by time so... 9 years is too long for me.

btw I feel like in some protestant church where people pray for those who gave money, so it is like goldish letters have benefactors we ordinary black/blue. Not fair.

I started my process at Switzerland assisted suicide clinic because it may need several year to get it.

No one knows when a med will be available. 9 years? Dr. Nagler says not even then. No one knows. Only the researchers. I am sure they are on the right track. Retigabine seems having an effect. AUT00063 has helped temporarily to someone. SF0034 looks promising. But I do agree. 9 years with my T from today? No way. This is pure torture.

 

[dan]

9 years? Dr. Nagler says not even then.

Martin, do you think TRT clinicians would be happy if a cure was found tomorrow?
Would big pharma be happy if Cancer was cured by baking soda?
I would not put too much stock in what he says other than TRT advice and referrals.
I think its great he is here to direct sufferers to TRT clinics around the world, but he admitted himself just 2 days ago, TRT is a business and tinnitus makes a whole lot of people a whole bunch of money....

 

[grate_biff]

Martin, do you think TRT clinicians would be happy if a cure was found tomorrow?
Would big pharma be happy if Cancer was cured by baking soda?
I would not put too much stock in what he says other than TRT advice and referrals.
I think its great he is here to direct sufferers to TRT clinics around the world, but he admitted himself just 2 days ago, TRT is a business and tinnitus makes a whole lot of people a whole bunch of money....

That is a good point dan. He has had T for over 20 years and seen many hopeful drugs take a dive. Also, he is not a sufferer anymore so he can afford to be pessimistic. Hope is keeping me alive. And Autifony is my biggest hope right now. If it too fails I guess Im pretty much fucked myself.

 

[Martin69]

Martin, do you think TRT clinicians would be happy if a cure was found tomorrow?
Would big pharma be happy if Cancer was cured by baking soda?
I would not put too much stock in what he says other than TRT advice and referrals.
I think its great he is here to direct sufferers to TRT clinics around the world, but he admitted himself just 2 days ago, TRT is a business and tinnitus makes a whole lot of people a whole bunch of money....

Difficult to say. On the one side, he tries to help, on the other side, it is his business.
I think that with milder T, one can habituate with or without TRT. Counselling is good, but I had so much counselling and reading myself. The rest is sound therapy. On milder days, it works very well. On most of my days, my kids keep me going, not TRT, any white noise or whatever. I fear, there are limits regarding loudness.
I guess one day they will have a cure and you will need taking the drug until your last day.

 

[dan]

He has had T for over 20 years and seen many hopeful drugs take a dive.

I agree with, except that there has been only 1 real hopeful drug (trialled on an international scale) that took a dive since 1939.
That was Neramexane. We are now entering the next generation of CNS neuromodulation pharma.
If Aut works, it will be Pandora's box.

 

[Cheza]

I started my process at Switzerland assisted suicide clinic because it may need several year to get it.

You have shown unbelievable courage, Christian. I understand the desperation behind your decision, but still I wish you could find a reason to keep going until a cure or relief is found.

Tinnitus is like a beast within our own bodies, waging war against us. In that sense, we are prisoners of war, looking for an escape. For those who suffer as much as you suffer, it truly is torture. It would be a blessing if medical science could kill this beast before you need that clinic. Then you could say, "I can't believe I survived that, but I did."

 

[Christian78]

You have shown unbelievable courage, Christian. I understand the desperation behind your decision, but still I wish you could find a reason to keep going until a cure or relief is found.

Tinnitus is like a beast within our own bodies, waging war against us. In that sense, we are prisoners of war, looking for an escape. For those who suffer as much as you suffer, it truly is torture. It would be a blessing if medical science could kill this beast before you need that clinic. Then you could say, "I can't believe I survived that, but I did."

Thank you on your support. I hope really autifony makes something that will at least lower it 30%. I find myself like this morning at maximum.

Before i was banned from sleeping because when i sleep afternoon then my tinnitus go up, now i can go sleep , because it is on maximum. Me and danik we are diference 5dB, his is stronger 5 dB, only difference I take my better, go out, I suppose if he was living here with me it would be easier for him. I wish, I cook, I clean... desperate housewife I am. And yes I have just only people, several interested in me emotionally that helps too.

Nice weather help most also and someone to speak with.

But my tinnitus get progressively worse:

i got it 13 august 2013 (woxra)
worsening 4 may 2014 200% (lyrica)
worsening 12 feb 2015 30% (corticosteroid injection in but)
worsening ca may/juny 2015 5% reason unknown

if i take any pill it can worsen it

If i fall and get to hospital I am finished!

Difficult to say. On the one side, he tries to help, on the other side, it is his business.
I think that with milder T, one can habituate with or without TRT. Counselling is good, but I had so much counselling and reading myself. The rest is sound therapy. On milder days, it works very well. On most of my days, my kids keep me going, not TRT, any white noise or whatever. I fear, there are limits regarding loudness.
I guess one day they will have a cure and you will need taking the drug until your last day.

I think honestly when we get into age of nano probes they will fix it with them.

Its true, one has to be in perfect or near perfect health in order to take Trobalt as it is so generalized acting affecting heart, kidney, sight, etc. Lets hope for Autifonys success, and Christian, 9 years??? If Autifony phase 2 is successful, i estimate we could get it in a couple of years tops. If its successful, we as a T community must push legislators/pharma for fast approval on compassionate grounds.

We would also write to US government and those who pay billions as pensions to the army veterans, and institution of army veterans to say here is a cure they just don't want to do it faster, help your proud veterans to ease their pain..

I was practically on the verge of death. It's thanks to tt and the great community we here, that I'm still here.

I agree about TT, what you got here is info about Trobalt, you got some form Swiss and then you got from me and you went from 10 to 2. So TT helped you to find some cure.

I wonder did anyone got some help from Keppra?