Retigabine (Trobalt, Potiga) — General Discussion

#3,271
john2012 said:
CONGRATULATIONS!!!
This really is the best news all week.
Hopefully continued suppression of the tinnitus signal will lead to permanent plastic changes.
We're all cheering you on.

EDIT...if you read the 2014 european paper, 1200mg is the minimum dose for effecting changes,
and chronicity (how long you've had it) is not really important, it's dosage that counts.
Click to expand...
It seems that RTG really has an effect at least when it's in your system and it's probably not placebo
Hopefully a derivative molecule with less toxicity/side effects better tolerated can be used for even longer experiments (ie. several years) to see whether they can slowly induce plastic change in chronic sufferers. Also a multi-drug targeted approach (Kv7 modulator taken with Kv3 modulator) and a combined drug-neuromodulation approach also worth investigation.
Anyone knows how can we donate money to their lab? I remember the T research lab working on this novel molecule operates on insufficient funding. It really saddens me. While the making-you-feel-good common sense rehab "treatment" is a million dollar business only a portion of it is really channeled into research on real relief/cure, that's insanity.

This pioneering TT Trobalt experiment and all the T researchers who are actively working towards a future treatment are always on my prayer.
 
#3,273
Danny Boy said:
Hey, guys/gals! Trobalt has lowered my tinnitus even further! This stuff does work! And boy do I feel great! I must say though, that a cure for tinnitus is really around the corner! Team Autifony!
Click to expand...
How loooooooooooooow can you go!

1limbo1.jpg
 
#3,278
Would be a good idea if someone can get a fMRI/SPECT/MEG/qEEG scan before and after taking Retigabine, and before/after dosage escalation/reported significant T reduction
It may shed some light on how it works on auditory pathway and why for some people it loses efficiency after a while.
 
#3,279
Just a random thought, gene therapy might become another line of research direction for T therapy

If you get an RNA aptamer which acts similarly on those potassium channels, put it behind a strong DCN fusiform cell specific promoter, pack it into a lentiviral vector, inject it into the brain, hell, you can get your body continuously producing the calming molecules. Theoretically you can also up regulate potassium channel expression and GABAA receptor expression in the specific cell types. We just need to have a more comprehensive understanding of the upstream regulatory region of these genes.

and this approach is apparently working in Parkinson's patients
http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(13)61939-X/abstract
 
#3,281
just a quick report , I am taking it extremely slow on Retagabine , did get my dosage up to 3x100mg but then I stopped for a few days ,planning to only use Trobalt when it got bad. It got very very bad for a few days and I took nothing, just to see what was going on. Then I had 3 consecutive super duper quiet days without any trobalt. I literally felt cured even though I knew it would not last. Yesterday it came back with a vengeance and I took one 1oomg , which knocked it down. I am feeling ok today , but nowhere close to those 3 beautiful quiet days.

Man , these 3 days were heavenly but very stressful."Will it stay away or come back ? "
I cannot understand why I get 3 days where I truly feel cured and then it comes back again. So friggin demoralizing.
I am now contemplating how to move forward.
Still feel that Retagabine is super effective for me albeit temporary.
 
#3,282
RaZaH said:
just a quick report , I am taking it extremely slow on Retagabine , did get my dosage up to 3x100mg but then I stopped for a few days ,planning to only use Trobalt when it got bad. It got very very bad for a few days and I took nothing, just to see what was going on. Then I had 3 consecutive super duper quiet days without any trobalt. I literally felt cured even though I knew it would not last. Yesterday it came back with a vengeance and I took one 1oomg , which knocked it down. I am feeling ok today , but nowhere close to those 3 beautiful quiet days.

Man , these 3 days were heavenly but very stressful."Will it stay away or come back ? "
I cannot understand why I get 3 days where I truly feel cured and then it comes back again. So friggin demoralizing.
I am now contemplating how to move forward.
Still feel that Retagabine is super effective for me albeit temporary.
Click to expand...
Congrat to you.
If I can have 3 days of silence I can go to grave immediately afterward without any regret
 
#3,283
Yes, you would think , but its hard to enjoy it to the fullest, very stressful.
I was pretty happy though , almost manically happy ... for 3 days.

It was strange , mornings were still pretty bad , but I kind of felt that I could shake it off ???
An hour in or so , I had 99% silence and NO brain T.

Now that it has returned it is mostly brain T . Lets see, maybe it takes a dive during the day , it is still within an hour sinc I woke up. Slightly hung over from the Trobalt.
 
#3,284
@Christian78

Just saw your latest User Experience. If it helps to know this, I have had similar experience with going up and down. I think most of us have. In your case you started out very bad, so it is a bigger swing for you. In my case, like I said in my last report, I had silent times on two different days. Now is just okay, earlier today it was, "Grrr. This again?" I think I may have aggravated some trigger points in my neck and got especially noisy, now it's had time to calm down.

So. It is a roller-coaster ride some days. I tell myself four things:
  1. I am better off now, so just enjoy the moment.
  2. I may get better with higher dose (staying at 600mg/day until I talk to my doctor).
  3. I may keep my improvement when I stop.
  4. Other methods may work for me (meeting my chiropractor for nutritional advice Tuesday).
  5. Now that I have been on Retigabine, I *know* that drug approaches can work, so I can look forward to the newer better drugs that are coming with more confidence.
We have made great strides in this experiment, friends and neighbors. We have proven that such a thing as changing the brain to attenuate tinnitus sound and annoyance is possible. Personally I feel that this has made me feel better even about habituation. Mostly I do still hear my tinnitus, but it is low enough that it does not bother me, so if it becomes a little louder, it just means I will need more time to adjust. It does not scare me or make me want to withdraw from life as much as it once did.

Hang in there, Christian! We are not as deep in the cave as we used to be!
 
#3,290
RaZaH said:
just a quick report , I am taking it extremely slow on Retagabine , did get my dosage up to 3x100mg but then I stopped for a few days ,planning to only use Trobalt when it got bad. It got very very bad for a few days and I took nothing, just to see what was going on. Then I had 3 consecutive super duper quiet days without any trobalt. I literally felt cured even though I knew it would not last. Yesterday it came back with a vengeance and I took one 1oomg , which knocked it down. I am feeling ok today , but nowhere close to those 3 beautiful quiet days.

Man , these 3 days were heavenly but very stressful."Will it stay away or come back ? "
I cannot understand why I get 3 days where I truly feel cured and then it comes back again. So friggin demoralizing.
I am now contemplating how to move forward.
Still feel that Retagabine is super effective for me albeit temporary.
Click to expand...
Hi RaZaH, hope you are well,
how much of any silence do you think you can attribute to trobalt?
were the '3 beautiful quiet days' the sort of thing that used to happen before trobalt?
 
#3,291
No, never ever had 3 consecutive silent days before . <But it seems that after any kind of lower days it comes back with vengeance , I almost just wish it was stable at semi-bad.
 
#3,292
RaZaH said:
Yes, you would think , but its hard to enjoy it to the fullest, very stressful.
I was pretty happy though , almost manically happy ... for 3 days.

It was strange , mornings were still pretty bad , but I kind of felt that I could shake it off ???
An hour in or so , I had 99% silence and NO brain T.

Now that it has returned it is mostly brain T . Lets see, maybe it takes a dive during the day , it is still within an hour sinc I woke up. Slightly hung over from the Trobalt.
Click to expand...

It sounds like you're doing well all things considered! Perhaps you should think about slowly increasing your dose and seeing the effect it has.
 
#3,293
john2012 said:
CONGRATULATIONS!!!
This really is the best news all week.
Hopefully continued suppression of the tinnitus signal will lead to permanent plastic changes.
We're all cheering you on.

EDIT...if you read the 2014 european paper, 1200mg is the minimum dose for effecting changes,
and chronicity (how long you've had it) is not really important, it's dosage that counts.
Click to expand...

Is that dose over the day, or in one single sitting? And thank you, hopefully I can have mild tinnitus until Autifony's new drug comes out. Seriously, severe tinnitus is a death sentence.
 
#3,294
Yes, I have decided to go all in at this point , its simply killing me . I have a pretty good attitude and I dont freak out easily,but I am at the end of my rope.

I realize that when I write about silence it sounds like I am doing great , but its proper insane between that.
I even stopped the Trobalt as between the dosages it was super bad so I guess I need to go for a proper dosage and see what that does. The mornings are unbelievable and that shit might crack me at the end. I truly feel like I cannot take much more of this.
 
#3,297
Danny Boy said:
Is that dose over the day, or in one single sitting? And thank you, hopefully I can have mild tinnitus until Autifony's new drug comes out. Seriously, severe tinnitus is a death sentence.
Click to expand...
i would not be sure of that
first you dont wanna take RTG for 5 years
second, you dont know if will create tolerance and have same experience than christian

im always optimistic and not a party pooper but be realistic
 
#3,298
#3,299
RaZaH said:
Yes, I have decided to go all in at this point , its simply killing me . I have a pretty good attitude and I dont freak out easily,but I am at the end of my rope.

I realize that when I write about silence it sounds like I am doing great , but its proper insane between that.
I even stopped the Trobalt as between the dosages it was super bad so I guess I need to go for a proper dosage and see what that does. The mornings are unbelievable and that shit might crack me at the end. I truly feel like I cannot take much more of this.
Click to expand...
Man, I know what you mean.
I am full back into sky high anxiety. Really tried to be positive.
But after 14 months torture with this shrill T, I fear I am losing it.
I even have no more quiet days, T always shrill and loud.
 

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