Retigabine (Trobalt, Potiga) — General Discussion

what i don't get is why people want to generalize their own experience with (and limited knowledge of) the drug, in an effort to dissuade others from trying something which may help them. this is going to be a problem for us, because the people who have been helped by interventions will gradually stop coming to this forum, but there seems to be a constant supply of would-be Cassandras
My sentiments exactly it did also helped me VERY HARSH 7 TO 2 or 3 sustained even one month after trobalt. I wish I could I get my hands on it sooner after acoustic trauma. PS @linearb, all side effects that affected me (eye light show or photopsias) is completely gone and the floaters are barely noticible now. As @locoyeti said the success cases suddenly start fading away and that is because we start living again after that awful tinnitus experience. I suggest that if you have an acoustic trauma talk to your doctor and try to get trobalt, the sooner the better. I promise myself to check in the forum to try tell my experience. If it were not for @dannyboy and others in the retigabine posting I will probably will not be at the point that I am at (hopeful and happy)
 
My sentiments exactly it did also helped me VERY HARSH 7 TO 2 or 3 sustained even one month after trobalt. I wish I could I get my hands on it sooner after acoustic trauma. PS @linearb, all side effects that affected me (eye light show or photopsias) is completely gone and the floaters are barely noticible now. As @locoyeti said the success cases suddenly start fading away and that is because we start living again after that awful tinnitus experience. I suggest that if you have an acoustic trauma talk to your doctor and try to get trobalt, the sooner the better. I promise myself to check in the forum to try tell my experience. If it were not for @dannyboy and others in the retigabine posting I will probably will not be at the point that I am at (hopeful and happy)
truth be told if I had just had a trauma, I might look at all this stuff very differently.

The way I look at it now is that if there's a trobalt protocol that's effective for tinnitus after 15 years, then it's probably effective after 20 years as well, and in 5 years there might be a bunch of data about Kv drugs that there isn't at present. So, the calculus is much different, it's "how much risk will I assume to try to have less tinnitus over the next 5 years", instead of "how much risk will I assume to prevent an acute condition from becoming chronic".

I'd still be wary, though.
 
truth be told if I had just had a trauma, I might look at all this stuff very differently.

The way I look at it now is that if there's a trobalt protocol that's effective for tinnitus after 15 years, then it's probably effective after 20 years as well, and in 5 years there might be a bunch of data about Kv drugs that there isn't at present. So, the calculus is much different, it's "how much risk will I assume to try to have less tinnitus over the next 5 years", instead of "how much risk will I assume to prevent an acute condition from becoming chronic".

I'd still be wary, though.
As always i agree with you its good to have both point of views so that people can make the right desicion for themself.
 
Now that I have upped my dosage to 600mg , 200mg *3 I get 95% silence for the whole day .
First time ever in this adventure that I do not wake up with blinding T , only slight T , completely bearable.
Still have no idea if this will last on this dosage or when I quit taking this stuff.
Plan to do this for max 4 months.

Side effects.

I get slightly blurred vision and sometimes very tiny tingles in my lips ?!
General side effects apart from that is feeling a bit "drunk"
Typing is hard , lots of mistakes.

Also ...lazy and huge appetite , I might end up like Elvis Presley .. :p
 
I will tell you this ...meeting myself again after almost 3 years has been a pleasure :)

Just that is very therapeutic...although , if ..I have to go back to T of death after my trial , that will be VERY hard.
 
Guys, what do you think about taking trobalt one or two days at week/month? Do you think it is a risk dont build up/quitting progressively (side effects/T rebound)?
 
Guys, what do you think about taking trobalt one or two days at week/month? Do you think it is a risk dont build up/quitting progressively (side effects/T rebound)?
Three thoughts which are very much at odds with each other:

*in general* risks with drugs go up with duration of use and dose. Using that model, taking Trobalt two days a month is safer than taking it every day.

*some drugs* don't necessarily follow this model; for instance, with benzodiazepines there is some data to suggest that the negative/neurotoxic effects are a result of withdrawal and not long term exposure. Some of the benzos are also potent and fast acting enough to provoke withdrawal effects from one or two days of use, and one might assume that it is more confusing to the immune*/nervous systems to have the ebb and flow, than a constant supply. Note that I am not saying I think it's safer to take 0.25mg of Xanax every six hours than to take 2mg a day for 2 days out of the month, only that these are different, and have different problems associated with them.

Now, finally in the case of Trobalt: this was a drug developed specifically to treat seizure disorders, which are chronic problems. All of the medical testing which has been performed, has been aimed at figuring out how safe it is for chronic consumption. So, you are in uncharted waters. What happens to someone who takes trobalt twice a month for six months? What happens to someone who takes trobalt once a week for a year?

No one knows. If you find out, do feel free to let us know...


* benzos have immunologic repercussions as a result of myriad and fascinating HP axis effects which are far outside the scope of this thread. I mention this only because in addition to being a Kv channel drug, Trobalt is a positive allosteric modulator at GABA receptors, and thus might have some of the same concerns.
 
Now that I have upped my dosage to 600mg , 200mg *3 I get 95% silence for the whole day .
First time ever in this adventure that I do not wake up with blinding T , only slight T , completely bearable.
Still have no idea if this will last on this dosage or when I quit taking this stuff.
Plan to do this for max 4 months.

Side effects.

I get slightly blurred vision and sometimes very tiny tingles in my lips ?!
General side effects apart from that is feeling a bit "drunk"
Typing is hard , lots of mistakes.

Also ...lazy and huge appetite , I might end up like Elvis Presley .. :p

Wow that is really amazing, how long are you on Trobalt now ?

And did you taper up slowly ?
 
@RaZaH
Thanks for the information. Currently I take 200 mg on occasion. Today for example. My T was on a 10/10, my whole head was buzzing and my anxiety was through the roof. Trobalt calmed me down and decreased volume for some hours - at least this was what I felt. I seriously considering also taking 3 x 200 mg. On the long run, I have way too many days with catastrophic T. Even though all the TRT guys tell you that every T can be habituated, I have my doubts.

@linearb
Yes there is a big risk (see the list from Danny Boy).
But my current and future life with anxiety, depression and severe T is not much better.
Most of my doubts come from the cases where people took Trobalt, but have no improvement.
Having additional health issues on top of T is nothing I can handle at the moment.
On the other side I see no much options for us than doing this trial & error.

Man, how difficult....
At least I can say that I tolerate 200 mg very well. No negative side effects.
 
I took 100 mg on occasion, building up to 3x100 , then 5x100 and now 3x200mg.
Just started 3x200 a week ago or so.
At the moment 3x200 works very well , that might change tomorrow or next week ?
 
Martin69 said:
@linearb
Yes there is a big risk (see the list from Danny Boy).
But my current and future life with anxiety, depression and severe T is not much better.
Most of my doubts come from the cases where people took Trobalt, but have no improvement.
Having additional health issues on top of T is nothing I can handle at the moment.
On the other side I see no much options for us than doing this trial & error.
Hi @Martin69,

This is all a personal decision, and I certainly don't disparage anyone from trying Trobalt... I took it myself ;) I'd just say, if you're going to do it, do it, and then maybe don't spend much time reading about other people's experiences?

There appear to be several kinds of dysfunction that can result in tinnitus. I'm participating in a research study of a new hypothetical treatment right now, and the researcher I've been working with told me that their belief is that there may be tinnitus which originates from different brain structures and requires different kinds of treatment. So, even if we knew for sure that Trobalt could treat one kind of tinnitus, it might not treat another, even if the "sound" of the tinnitus is similar.
 
I think I read a german-argentinian study where they say, they watch the brain structure impacted by the T and they search the best drug for each patient...
 
@RaZaH
Thanks for the information. Currently I take 200 mg on occasion. Today for example. My T was on a 10/10, my whole head was buzzing and my anxiety was through the roof. Trobalt calmed me down and decreased volume for some hours - at least this was what I felt. I seriously considering also taking 3 x 200 mg. On the long run, I have way too many days with catastrophic T. Even though all the TRT guys tell you that every T can be habituated, I have my doubts.

@linearb
Yes there is a big risk (see the list from Danny Boy).
But my current and future life with anxiety, depression and severe T is not much better.
Most of my doubts come from the cases where people took Trobalt, but have no improvement.
Having additional health issues on top of T is nothing I can handle at the moment.
On the other side I see no much options for us than doing this trial & error.

Man, how difficult....
At least I can say that I tolerate 200 mg very well. No negative side effects.
there are many options actually ... we just tend to look for the ones we think will work only ... acupuncture, TMJ, mycofacial stress, stress in work and changing lifestyles, sleeping patterns, yoga , diet etc ... all can help reduce the sound to bearable level ...
 
Dear Danny where do you get neurontin.
So... why ask people on the internet where to get powerful psychiatric drugs, instead of consulting medical professionals with direct experience prescribing and managing them?

facepalm.jpg
 
Danny Boy how.much neurotin are you taking?and are you mixi ng it with trobalt? Sometimes seems like it helps ,then other times seems like it don't....for me
 
So... why ask people on the internet where to get powerful psychiatric drugs, instead of consulting medical professionals with direct experience prescribing and managing them?

View attachment 9309

Maybe because "medical professionals" have 0 clue about T. (Thats the hard truth, I have even see the most knowledgeable european T expert according to Dr.De Ridder and he couldnt even tell me much, he even knew about trobalt and other off label drugs, so I wouldnt count it out, just because you say so)
And if you propose some kind of off label drug to your normal Doc because you say you have suicidal T and tried everything else, they will only give you a "no" because of risks. Desperation.

Sure, I know your stance on drugs and If I also had a manageable T I would not take any risks...
But if you think "medical professionals" are some kind of help or can give _real_ advice to severe cases then youre living in fantasy world.

If you have "normal" T like one sound with low to medium volume then I wouldnt take any severe drugs on your own and it will get manageable over time...but if youve tried everything and you go to that "medical professional" and tell him that youre pretty much dying from all these sounds and youre read somwhere on the internet about gabapentin or trobalt....What do you think will happen? You will receive that facepalm too ;)
 
Hi @snow86, I think you misunderstood my objection to the post I was replying to. I've tried all of these drugs, and done it under the auspices of regular doctors.

Beyond that, Gabapentin, unlike Trobalt, is not a controversial, or particularly unusual drug for tinnitus. There are several papers which have attempted to look into its efficiency, and it's one of the things which was directly suggested to me by an ENT doctor.

Dr. De Ridder knows more about drugs and pharmacology than I ever will. I am in no way dismissive of the prospects of Trobalt or Kv, the strongest statement I will make is that much further study is needed to determine if these drugs are effective, and if so, what the correct protocol is. Until there's more data on that, it's a crapshoot. It's one thing to be desperate enough to make a crapshoot under the guidance of someone who has experience prescribing a drug; doing it on your own is russian roulette. I would be frankly shocked if Dr. De Ridder, or anyone else with actual medical training, disagreed with that sentiment.

If someone is, indeed, suicidal, taking unprescribed psychiatric drugs is the last thing they should be doing, because very reliable research shows risks of increased suicidal ideation among some subset of people who try them. Gabapentin is no exception
http://www.fda.gov/downloads/Drugs/Drugsafety/UCM229208.pdf
The FDA said:
NEURONTIN can cause serious side effects including: 1. Suicidal Thoughts. Like other antiepileptic drugs, NEURONTIN may cause suicidal thoughts or actions in a very small number of people, about 1 in 500.
1 in 500 doesn't sound like much, but this forum has 10,000 users. If every one of them tried Neurontin, then you'd expect 20 of those people to have "suicidal thoughts or actions". If that person were already suicidal, well... you get the picture.

As I have said repeatedly, I have no problem with people making informed decisions about their own health and electing to take drugs, it's the definition of a personal decision from where I sit. What I object to is the way that these discussions go on here; the post I was responding to specifically was asking someone with a demonstrated track record of buying unprescribed drugs, how to get them. I definitely appreciate a lot of the insight that @Danny Boy shares with us, and the compassion he has for new sufferers. However, some people seem to think he's some kind of pharmacological guru, and that's incredibly dangerous. Unless I am mistaken, he has no medical training.

Over the past couple years, this forum and these threads specifically have gravitated further and further towards the kind of reckless, thoughtless, desperate drug use which is usually found on places like bluelight, and not on support forums. It frightens me, and so I will continue to be vocal about it for as long as it persists (or until I move on with my life sufficiently to not be posting here, which is looking more and more likely).
 
I hope you dont stick around !

Because you have healed and dont feel inclined to stay any longer.
If not i feel you are a valuable member of this forum and do indeed stick around.
And I agree , we should be very careful with all this drug talk :p
 
So... why ask people on the internet where to get powerful psychiatric drugs, instead of consulting medical professionals with direct experience prescribing and managing them?

View attachment 9309

Your Doctors must be the top 10 T-documented doctors in the world. In my case no one would prescribe me absolutly nothing for my T. Just "dont care about it" 200mg.

I visited 6 different Doctors in my acute phase. No one even talked about corticosteroids. Fu** them all.
 

Log in or register to get the full forum benefits!

Register

Register on Tinnitus Talk for free!

Register Now