Retigabine (Trobalt, Potiga) — General Discussion

Trust me it was a long journey until I got it, I had to wait 1 month for it. A friend from Spain brought it to me. I will consider myself lucky if I will see some benefit from it. I try so be patient but in the same time I am anxious and sad.

 

I didn't feel anything until i ingested a 300mg pill. 100mg truly is nothing, and once you are finished metabolizing it (8 hours), it is gone from your system. i've written before about the tapering protocol- it was meant for epileptics, for which this drug is meant to be something they are always on (you never know when you have a seizure). for our purposes, it matters mostly about how high a dose you can take at a single time, not it's duration throughout the day (maintaining it in your system by taking it 3 times a day). i would keep your minimum dose at 200mg x 3 a day, and move to 250 x 3 a day 3-5 days later, until you get to 300mg x 3 a day, then maybe consider going higher according to how you feel. i'd be shocked if you didn't feel some effect from RTG. good luck.

 

today I took 300mg morning and noon and absolutely no change in tinnitus.
Is it safe to say that rtg doesn't work on drone noise?

 

are you feeling any side effects? i remember a few times taking RTG and not feeling anything, but that was rare. it's a pretty crude drug (not very selective), so i am sure there would be some effect, at least some of the time on your t. even if your t was localized in your auditory cortex, there should be some effect. i'm going to assume you got your pills from a reputable source.

 

No major side effects, just a bit of tiredness and sleepiness.
Yes got my pills from a pharmacy, all legit.
I'm just worried it may not work on low frequency noise. Maybe it's more for tonal T?!

 

It's the oposite of my case ,when I was taking Trobalt (only 100mg/day) the hissing noise disapeared and tonal still there
@Hope2015 , locoyti is right I am wondering how you didn't feel any change on your T

 

If you read his post he said he didn't feel much until he took 300mg pill!
100mg is really a low dose and you're lucky if you're responding to that dosage! Are you still on it?

 

An Unpopular Post...?

With 227 pages and nearly 300k views at this point, I would like to raise a point or two with the tinnitus community (or rather the "Trobalt community").

My main point is that I feel this thread is leading nowhere. Besides "patient zero" aka @Mpt we do not seem to have members with the same impressive results. Furthermore I would like to make two observations:

• The members who were part of the first wave of trials at this time last year have have not done a good job of reporting their results (this applies also to later members for that matter). I wrote several posts regarding this subject in this thread and in the thread related to the petition for the ATA. In addition, I wrote PMs to some 10 members here on the board asking them to please adhere to a better reporting protocol: apart from one or two members, not only did the members not standardize the timeliness of their reporting, they could not even be bothered to reply to my e-mail. Another member, @locoyeti voiced the same opinion here: www.tinnitustalk.com/threads/retigabine-trobalt-potiga-%E2%80%94-general-discussion.5074/page-142#post-103073
• I cannot help but notice that a not insignificant number of members who have tried Trobalt and who mention having a beneficial outcome are still "lurking" on the forum. If I got my life back so-to-speak, I would definitely not be visiting the forum that often if at all (although in my case, I probably still would given all my connections with researchers and pharma companies not to mention the huge amount of advocacy I provide to the tinnitus community - but that's another story).

In addition, I would like to point the interested readers to the following findings from some research provided by Prof. Tzounopoulos earlier this summer (and this was not his SF0034-paper, but another piece of research documenting the involvement of the HCN channels). The research mentions how tinnitus perhaps only can be prevented (by potassium channel openers such as Trobalt) in the early stages after noise exposure (or at least that is how I interpret the reading).

Source: http://elifesciences.org/content/elife/early/2015/08/27/eLife.07242.full.pdf

Of course the above piece of literature does not rule out that some members could perhaps still benefit from Trobalt: medicine is not an exact science. But by not listening to members of Team Trobalt when it really mattered last year, the tinnitus community has once again done itself a disservice because now we really have no reliable data to go by. And hence this extremely long thread has turned into well... non-sense, really!

My personal suggestion would therefore be that this thread is locked and discontinued (because it serves no real purpose in my opinion - except to potentially bait people into trying something which we really don't know if it works or not - and if it does, then for which "scenarios"). Members who wish to report their trial of Trobalt can do so via the reporting scheme.

attheedgeofscience
27/DEC/2015.

 

@attheedgeofscience
Few points here:
1. Many of us didn't have the opportunity to get trobalt until now so we have missed that first ship (latest finding won't do much I guess since the paper you wanted is out now),
2. Reports are now, if I'm not mistaken, only for people who where prescribed rtg by doctor (I'm not one of them) so some of us are doing it "under the counter",
3. Not being rude here but why didn't you post your results? It's hypocritical don't you think?

 

For those who wish to know, I have now started Trobalt again (I ran out as I had only a box of 84 x 200mg tablets; I have now obtained three boxes of 84 x 400mg tablets).

I am two weeks into my second round. I am already at 1200mg / day since a week (I did a fast taper). I have not really noticed any real improvement. I have noticed a couple of times when I woke up and my left side tonal tinnitus was a notch lower and this lasted for about an hour - and I definitely would say that this was something I could attribute to Trobalt (as I had such a specific reduction). However... with such a reduction, I was therefore hoping for more of those to occur and hence see a gradual improvement, but... alas, that has not happened. I do have some degree of head noise (something which I have had since birth). Trobalt seems to influence that to a noticeable degree.

I should also mention that I have a lot of knowledge about myself in relation to my specific case of tinnitus. For instance I got a high resolution EEG scan at the HIFU clinic in Switzerland - see images here:



The interpretation of the image is that I have hyperactivity in a certain part of the brain (red/yellow area). The findings by Prof. Jeanmonod reads:

"...The remaining potential cause for it is to be searched in the psychoemotional domain. This is supported by the trend demonstrated by the EEG quantification for an over-activity in the right orbito frontal area, inside the paralimbic/associative system. In this context, I see no indication for a functional neurosurgical treatment and limited chances for a pharmacological control of the tinnitus of..."

This is another reason why sub-types of tinnitus are important (as they hold the clue as to whether a certain treatment is likely to be beneficial or not). And in my case, Trobalt is not likely to help me.

Side-effects so far:

• Drowsiness after intake: quite helpful for going to sleep actually (not that I had problems with that to begin with, but still).
• Peeing takes a little longer (but not a big problem).
• Vivid dreams.
• I need to double check my posts for spelling and such.

All-in-all, I am pleasantly surprised by the lack of side-effets: I was expecting something much worse by all the accounts I have seen here on the forum...

 

I have already stated that I have author status. Therefore, I cannot post my results in the report section and also be part of a research paper at the same time.

Lastly, I have devoted I don't know how many hours (> 1000) to help the tinnitus community so if I happen to be hypocritical once in a very rare while well, then so be it. I should also mention that I undertaken another wave of research using volunteers here on the forum for in-depth study of volunteers taking Trobalt. This piece of research has gone unnoticed (as it has not been publicised to the forum).

 

I have now: see my post further up. I was writing my post before I could read yours.

 

Thank you @attheedgeofscience for the above useful information and all the work you've been putting into T awareness.
Sorry to hear that RTG does not have any significant effect for you, it seems that it only has a temporary effect for quite a lot of people (includeing myself).

 

@locoyeti - you were one of the members who stayed on Trobalt for a 3-month period or so (if I recall correctly). You were also the first member to reach to 1200mg / day I seem to recall. Could you give a short account of when you reached that level and how much your tinnitus improved - and when i.e. when did you start to notice something was happening (i.e. how far into your trial)?

Also: what was your total improvement would you say (I seem to recall that you have decided not to do a 2nd round as your result from the first round was so good).

Thanks!

 

I am planning to stay on this level for another 3-4 weeks. I would like to see if there are suddenly any improvements. I will - in addition - try to track down information from researchers as to what we can expect from a course of Trobalt (i.e. does it make sense - at all - to continue a course of Trobalt for "x" number of weeks?).

 

Many epilepsy patients are prescribed trobalt. 10-20% have tinnitus. Why no stories epileptics tinnitus getting better?

 

@attheedgeofscience

Apologies for not knowing about author status, with the number of posts it's easy to loose track.

Can I just ask about head noise you have from birth; is trobalt helping that or not? You said it's influenced to a noticeable degree! For better or worse?
Thanks!

 

For the better: I can usually tell at the beginning of the day if I have the head noise or not (it is not loud, but unmaskable - I can hear it in the car for example or when sitting next to a computer fan, which tends to mask my tonal tinnitus). If I don't have it when I wake up, then it will stay that way for the entire day. It cycles i.e. I have will several days with no head noise, and the one with head nose. These cycles seem to have been impacted by Trobalt (for the better).

 

@attheedgeofscience Hi comrade ! I think you tried fluipirtine too with good results ? What is the difference for you between trobalt and fluipirtine if you tried both ?

 

Make sure you're not peeing in a litter box! (possible cognitive deficits from taking Trobalt)

 

Yep... that one still brings smiles to my face. Haha...

 

Thank you for your advice, @locoyeti ! In this morning I took 200 mg, nothing happened, just kidney pain. I am ready to endure this pain and the side effects but I want to see something, at least a small benefit. I am 21 years old, I weigh 50 kilograms, I am thin, I would raise the dose because I am so annoyed, I did not see anything from 100 mg and neither from 200 mg.

My tinnitus is similar to @valeri , it's weird, when I plug my ears I hear my Eeeeee tone with the hiss but if I stay more like this I start to hear a drone noise, which is so scary.

I have to add that my t is reactive, when I wake up it's lower but after I take a shower or come home from outside it's screaming, it's very loud and the drone noise is more pronounced.

Maybe Keppra would be better for reactivity but I tought Trobalt it's so strong that will do Keppra's job too...
I wonder if here are persons who had drone noise like me and @valeri and trobalt helped them.

 

I am on vacation these days , I think its fair to say that Trobalt has helped me a lot enjoying my time here .
My dosage is quite erratic , ranging from 400mg per day to 700 ...100 mg at a time ...gobble one down when I feel I need it. 100 mg does work for me for a while ...I seem to be the only person where a 100 mg does anything. Only taken 200 mg today , maybe its not smart to play around with the dosage ?

Having said that , when I have a very bad day Trobalt seems to do almost nothing ...very strange ?
Also worth noting , as much as i was apprehensive about the flight , I had 3 incredible days after the flight ...connected to pressure change or not ? Have no idea ?

I am planning to up my dosage to a steady 3x300 mg per day when I come home in a week.
Also will be trying a dose of Neurontin when I have a day off .... a la Preslys.

Side effects so far ...slight drowsiness , bit of floaters ...always had them, might just be more "aware" of them now ...not sure.

 

How does one access trobalt if they live in the uk?

 

You won't get it from NHS. Try a private practitioner.

 

@Atlantis , how would that process work. Do i need to get private health insurance first? Will they prescribe i tto me even though it's not for epilepsy?

 

I don't know how it works, you may need to pay the private doctor costs out of your own pocket. I guess it's £100-250 per visit. More than one visit may be needed so that the doctor can look how you are doing.

Not all UK private doctors will prescribe it off label for tinnitus. I don't think most will. I don't know how you can find a private doctor who would.

You will have trouble getting it. Maybe good so because it seems to be ineffective for most people.

 

hey there ateos. great points as always. my trial lasted roughly 8 weeks. i did a fast taper, i reached 300mg tid in about a week, and stayed there a week. i went up to 350mg tid a week later, and then 400mg tid a week after that.

i think i felt some improvement when i first took the 300mg pill, a week after starting. it was slightly temporary at first, but i recall the rebound of my t being lower. seemed like every subsequent dosage kept the t lower. i feel like my t was just getting better throughout the trial, though there were variations in its effects in duration. when i was at 400mg, i think i had the same effect on my t as the 300mg, it just lasted longer and the side effects seemed stronger for me.

its been a year since i stopped, and i think that my experience with rtg was well worth it. i think it most definitely had a permanent effect on my H (went from an everyday nuisance to just a few days in a month). it is hard to remember how many different sounds were in my head at the time, but the 'purification' of sound has also been a beneficial and permanent effect (easier to deal with fewer sounds/tones). in terms of the volume of my t that went down pretty significantly as well, but it is so hard to disentangle the confounds in this regard (ToT tincture of time, the euphoric effects of RTG, the resolution of H/cacophony of sounds). my T is variable, so i would say that the range went from 1-8, to 1-4. far lower amount of bad days.

most of what i just wrote was from memory with some reference to a diary i kept at the time. for more specifics that i may have left out i would go over my user experiences and my posts on this thread. at some point i will write an exit report similar to what juan carlos posted.

this thread seems to be the central meeting point for members that are interested in this drug (perhaps i should speak for myself, but i basically come to this site occassionally just to catch up on this thread). i don't necessarily think of this thread as bait for other people, i consider it more about information on a new drug that might work for them. i remember last summer after my second round of AM-101, sitting on the couch, pretty much resigned to this condition, and then i noticed this thread, and it literally changed my life. i know at least some people out there who would appreciate being able to come to a live thread on this topic. this is still an ongoing (albiet imperfect) trial, and i like the idea of keeping it going. my suggestion would be for someone in Team Trobalt to compile a more informationally dense version of this thread (all of 10 pages perhaps) and lock that.

i am guilty of this. i have for the most part got my life back, but this particular drug and our informal trial is pretty useful to follow. and i still have tinnitus, just a whole lot less of it. i am sure the same applies to the other lurkers. plus TT is such a great site!
also, at a slight remove from my previous suffering, i find t to be intellectually intriguing. i've lost the source for this quote, but i share the same view:
"For those of us who consider subjectivity to be the ultimate question of science (given that all of the rest of science is fully dependent on such brain activity), tinnitus is indeed of extraordinary significance. One does not wish such inner sound on anyone and, given its persistent nature, abhorring it should be the rule. However, for those wanting a glimpse into the physical nature of subjectivity, tinnitus is riveting."

i'm not too sanguine about a 'cure' anytime soon, but i am very hopeful regarding a therapeutic drug which can provide relief. for at least some of us, RTG is that drug.

good luck @attheedgeofscience

 

I read several pages of this thread and am now wondering... Would combining a potassium supplement with retigabine give better effects"!?

 

@Danny Boy, you don't take this anymore?