Retigabine (Trobalt, Potiga) — General Discussion

As I found, Trobalt is beneficial and just can do something for someone without high frequency hearing loss.
Sadly nobody cured (or decreased in her/his T loudness) with Trobalt who had hearing loss too.
Apparantly Trobolat is good only for T sufferers with normal heading or near to normal hearing
 
As I found, Trobalt is beneficial and just can do something for someone without high frequency hearing loss.
Sadly nobody cured (or decreased in her/his T loudness) with Trobalt who had hearing loss too.
Apparantly Trobolat is good only for T sufferers with normal heading or near to normal hearing
Where is your evidence for saying that please?
 
As I found, Trobalt is beneficial and just can do something for someone without high frequency hearing loss.
Sadly nobody cured (or decreased in her/his T loudness) with Trobalt who had hearing loss too.
Apparantly Trobolat is good only for T sufferers with normal heading or near to normal hearing

I have high freq. loss in the 6000 hz left ear and 8000 in the right ear since my acoustic trauma, although not cured, i do feel that trobalt has reduced my tinnitus in an important way. Your statement is an absolute one and in this case wrong because as i always tell people we simply dont know anything, so far including my case is anectodal at best and has no scientific proof so saying its a cure is wrong and saying it does not lower tinnitus and its not a cure its also wrong. Its probably best in the case of trobalt to abstain from posting absolute comments unless you have absolute knowledge of what your are posting, otherwise you will only contribute confusion.
 
Ateos,

Nearly dying from expirimental meds or being suicidal is serious bussines. More serious then my problems at the moment (they are pretty serious and life altering to me, many should know here what it means - i'lm talking hard to mask reactive T and hard to treat and frightening H).

I raise a point about safety and you post a story about almost 'dying' from an experimental treatment… in an argument about the possible safety issues of using RTG as an experimental drug … wich went a bit off topic. I agree with that, stupid of me : I know nsaids and paracetamol work way different then opiods. Some even here experiment with dosage or taper up and down like their own insight and ignore the trobalt booklet

Let's cut the e-crap then(my fault also) and jump to the point. I shouldn't have used 'I rest my case', but more 'my point of view' instead.

You are trying to conduct an experiment here, what are your responsibilities in it? Suppose you have 200 people who tried it/trying it at a certain time, at free will because of this topic, and one case goes horribly wrong (a minor possibility, but not unrealistic?) What would the effect be on this expirement, media wise if it gets spread ?

You can be as knowledgable about medicine and pharmacology or personal experimentation with 10's of meds and treatments tried out as far as i'm concerned. You cold have worked for big pharma or been research assistant for 10 years and know how to pull their strings … or be a good marketeer or data miner, or whatever ( i do know you are not a medical professional or a researcher at all, just facts here… i too am not, i work in IT on a big university: support, not research ) I read your work history last month in a fine topic about that.

But that doesn't justify any of these actions

- Being condescendant to a person (one you don't know at all)
- Being inconsiderate about another persons suffering (again, one you don't know at all): hereby like defying the sole purpose of a T board, giving T support
- Immediatly play it on a personal level and hit a major button, my major weakness(not pharmacology, don't try it , it's not a d*ck fight here) but my T! (and H and facial pain wich you didn't know). If it wasn't for my last point i'd have given you the benefit of the doubt

I know this game, that's why i said 'i'm done' immediatly a few nights ago

- Just find out this one today, why today, it might stir up a reaction… or not

Suffering from T, determent to find a cure at any, lead this RTG project into something good, strong emotions involved … ? Just a geuss cause i don't know you, definitely some personal grudge in these reactions, grudge in wich i will not be involved. You where more respectfull at yet another board where freedom of speech seems to be the most important , so here it is still a few last words from me. RTG is being 'tested 'here, not sold or advertised, so the ugly side effects ittie bitties should be in it too, offence or not. It works for some, it doesn't for others.

I see different points of view towards getting better: medicinal or mental. If you don't like certain viewponts being held strongly by others, leave it if the discussion leads knowhere. Or you are as stubborn as the people you accuse. This can be forgiven, because whe're emotional beings fighting each or own T battle (and some even a lot more). It can get very hary at times. Sure you should be able to criticize the others viewpoints too… but with respect.

Christian,

- Finding facial pains, bad tinnitus and hyperacusis a joke? (well not funny at all christian, or is it to you?)
- You dreamt being a borg helping people with T, i remember you writing this… you want to rent a hotel in a quiet place for people to meet on a T and H meet instead of noisy New York if you were rich… nice thoughts! I read this forum and follow many stories. I'd better not for my own sake maybe? My decision.
- I caused you a laugh, hopefully not a green misantropic laugh as we say here in tiny Belgium… good thing maybe
- I sure still wish you love and the sea

You raise the point about having so much trouble by being prescribed certain meds by inconsiderate doctors. So lets take unprescribed meds and be our own judge? (normally prescribed by the same incosiderate doctors or did you have a prescrition and accepted? ) You also raised a point here i was trying to convey about certain dangers of drug use. I've been prescribed benzo's when i was a lot younger, i wish i could've reverse that too.

In general,

I could be wrong. Because then again i don't know you all, easy judging on the internet…
I'm to old for these internet wars anyway, yet quite young enough to still hope for a better life with or without T (and no, no old geezer from that old geezer forum wich it is not) . I've learned how to filter the net, professionally and personal... learned to set emotions away (mostly) at the professional level: wait the emotional reactions out, and then react.

I agree with letyo's point of view, we are all responsible adults here? I've seen lots worse on the internet.

Considering side effects. I'v seen people turn pale at the view of a needle and a drop of blood, others can take a bit of gore or misery and pain. Different minds , fears and bodies … different reactions, wether pharmaco - or psychological.
 
What would the effect be on this expirement, media wise if it gets spread ?
I don't know. Let's worry about that if it happens. Besides - and this really is the main point - no one on TinnitusTalk was forced to take the drug. Everyone took the drug out of their own free will. Everyone is an adult and should be competent enough to decide if they wish to do something or not. Some roughly 20% of this world smoke. It gives the smoker a higher risk of cancer, wrinkles, heart disease, and many many other medical conditions. Yet people still do it. So let's not start talking side effects of a small small trial (which isn't even a trial) when there is about ONE billion smokers on this planet who willfully harm their body everyday. So stop this "responsibility" crap.

I have been asked by a number of folks how I am doing (tinnitus-wise): too early to draw conclusions. I'd rather state something when I have a more consistent "picture" of that.

In relation to side-effects I am pleasantly surprised: I have no real side-effects beyond drowsiness and slight cognitive deficits. I thought this - based on the many other testimonies within this thread - was going to be a tough ride. But no, not at all. And, I am already at 1000mg/day (did a very fast taper): I should not be at this level until 5 or 6 weeks from now. I think perhaps the poor reputation Trobalt has been given is due to the other medication some folks are taking (e.g. Xanax).

attheedgeofscience
15/NOV/2015

P.S. Everyone should have had their medication prescribed by an MD (so it is his/her responsibility). If they didn't, and got it from - say - Spain then, again, it is the pharmacies responsibility. No mine, yours, the staff of TT, or the prime minister's dog.
 
I've sent my user experience conclusions to Markku but here you can find them as well

I did two rounds of trobalt at 900-1200 mg per day, the first one lasted for 2 months and half, then I stopped for two months, and started again for four months (again at 900-1200/day). The first one was the most beneficial.

The first round has been the most beneficial and did bring my T from 3 or 4/10 to 0.5 or 1/10 on average (generally 4-5 very good days and the 1 or 2 more bothersome days, real bad days were very rare, only a few during my first round). After I tapered for the first time I had like 10 days with more bothersome T but then it went back to 1/10 for 2 months without any drugs. After two months it started to worsen again, so I started trobalt again, it then stabilized it around 2 on average, but it was not as beneficial as the first round (I was building some tolerance I guess). Now it stays around 2 on average, with lovely days (30-50% of the time, no highpitch, T not intrusive and very low, very easy to forget), but also more bothersome or bad days with nasty high pitch (but still those bad days, loudness is for me clearly lower than before I started trobalt, that's just the pitch that is enough to make it bothersome). Trobalt clearly has purified my T and eliminated a lot of the different noises I could have in the same time before, but, as stated above, it has not fully eliminated the nasty pitch that comes every other day on average, which is line with what is stated in this article ATEOS brought to our attention:


https://www.tinnitustalk.com/thread...ion-to-shl-induced-tinnitus.9505/#post-113035


All in all, it's not perfect and I'm not fully satisfied of course, but it's definitely better than before. Not so much side-effects while taking it (except some highness and a bit of fatigue, only when I was taking 900/day or more, felt nothing on lower dosage), no side-effects at all now.

My mild H also completely disappeared (maybe it's a bit too much to call it H I don't know, let's say it was some sound sensitivity).

A last point : many trialees here have experienced fast relief of their T for 40-60 minutes taking a dose like 300mg for example. Personally, I had this kind of effect the very first days being at such dosage. But then, if I was having a bad T, a 300mg dose and the sedation effect would do nothing to it; it's just that my T at that time was like 75% of the time very quiet and low (or if I woke up with bad T, typically I would have a very long lasting – like the whole day – residual inhibition effect from my shower … I always had residual inhibition effect, but with trobalt it was clearly 100x stronger and long lasting, particularly during my first round)

Hope this helps
 
I have high freq. loss in the 6000 hz left ear and 8000 in the right ear since my acoustic trauma, although not cured, i do feel that trobalt has reduced my tinnitus in an important way. Your statement is an absolute one and in this case wrong because as i always tell people we simply dont know anything, so far including my case is anectodal at best and has no scientific proof so saying its a cure is wrong and saying it does not lower tinnitus and its not a cure its also wrong. Its probably best in the case of trobalt to abstain from posting absolute comments unless you have absolute knowledge of what your are posting, otherwise you will only contribute confusion.


Dear Papu,
My Audiogram is as below. Everything happened in one night about 8 months ago..
When I wake up, I had hearing loss and two days after onset, my T started.
I have seen many ENT doctors and did MRI and lots of Blood Check etc., but never they couldn't understand exactly what was the problem (Idiopathic Sudden Hearing Loss unfortunately)


Do you think Trobalt can help me to reduce my T loudness with respect to my sloppy audiogram ?
 
Do you think Trobalt can help me to reduce my T loudness with respect to my sloppy audiogram ?
I can only tell you that based on the forum trial post, it works best on people that aquired their tinnitus around one year or less. Also best results were in infection, acoustic trauma and hiper triglyceride cases. As I told you its only anectodal. Did you have vertigo associated with your hearing loss? (meniers disease). Have you gain some of the hearing back ? I have read that a major portion of people with sudden onset of hearing loss can gain everything back in less tha a year? As for the trobalt thing if you can find a doctor to prescribe it and do the follow up you could probably give it a try.
 
I can only tell you that based on the forum trial post, it works best on people that aquired their tinnitus around one year or less. Also best results were in infection, acoustic trauma and hiper triglyceride cases. As I told you its only anectodal. Did you have vertigo associated with your hearing loss? (meniers disease). Have you gain some of the hearing back ? I have read that a major portion of people with sudden onset of hearing loss can gain everything back in less tha a year? As for the trobalt thing if you can find a doctor to prescribe it and do the follow up you could probably give it a try.

I have had tinnitus since 1988 and have recently started taking retigabine. I have just updated the Retigabine User Experience thread of my findings. On one occasion I had a bad reaction to it, but decided to persevere. It is detailed in my post.

It appears to be having a positive effect on my tinnitus, after trying just about everything over the last 25 years or so, and getting virtually nowhere. I think I am immune to placebo effect with such a long history of disappointment with everything I have tried.
 
@Mark662
Mark I am very happy that it's doing something for you but I must say you are taking a Rollercoaster approach I suggest not going up and down like that and stick to a daily dose between 600 and 1200 mg divided in three takes or every 8 hours and you will see better results in my opinion and will stop having those weird episodes that you still have. Just my 2 cents nobody knows anything about this but that Rollercoaster approach does not sounds right . Anyway I am happy that someone with chronic tinnitus has felt some relief with trobalt . Keep us posted.
 
I have 3 boxes of Trobalt but here's the thing - They expired in March of this year but I still really want to try this stuff again. Does anyone know if its unsafe just because they're expired? I'd imagine it probably loses its potancey.
Thanks in advance to anyone who answers.
 
The attached full-text research paper by Prof. Tzounopoulos is actually what is behind the subsequent interview in the following Daily Mail article from two years ago now:

www.dailymail.co.uk/health/article-2331701/Epilepsy-drug-help-prevent-TINNITUS-reduces-hyperactivity-cells-ear.html

Both the research paper and the article are worth a read. And "of course" the epilepsy drug hinted at in the title is Trobalt.

While article has been shared a number of times here on the forum, I don't believe the research paper ever has.
 

Attachments

  • Pathogenic plasticity of Kv7.2-3 channel activity is essential for the induction of tinnitus.pdf
    2.1 MB · Views: 67
I have 3 boxes of Trobalt but here's the thing - They expired in March of this year but I still really want to try this stuff again. Does anyone know if its unsafe just because they're expired? I'd imagine it probably loses its potancey.
Thanks in advance to anyone who answers.
What does your pharmacist say? From what I remember you had quite severe side effects including cognitive deficits, so why would you want to try Potiga again?
 
I have 3 boxes of Trobalt but here's the thing - They expired in March of this year but I still really want to try this stuff again. Does anyone know if its unsafe just because they're expired? I'd imagine it probably loses its potancey.
Thanks in advance to anyone who answers.

I had a bunch of pills that expired in April 2015, I continued taking them up to June.
The expired pills didn't seem to be any different than the other two "fresh" batches I have tried.
Some of them worked better than others, just like any RTG pill.
I still think that the manufacturer is doing a poor job quality controlling their product (that is, a 400mg pill might actually not contain 400mg of the active substance, hence the large variations in the effectiveness of each pill).

That being said, my pills were expired by 2 months... Your pills have expired more than 7 months ago. I think its a bit of a risk taking this chemical after being long expired.
I'd get fresh batch if I were you, maybe your pharmacist can help you "recycle" the old dope and get new boxes...
 
A little off topic but related to the cell membraine, can you give us some light with your knowledge about why will or wont work this supplement phosphatidylcholine
I am afraid my knowledge does not extend that far. What I can do is get information from researchers on the subject. In addition, I will attach the following document on the subject - and - which is co-authored by Dr. Michael Seidman (those who pay attention to names will know he has been involved with the AM-101 trial...).
 

Attachments

  • Alternative medications and other treatments for tinnitus facts from fiction.pdf
    158.8 KB · Views: 63
I am afraid my knowledge does not extend that far. What I can do is get information from researchers on the subject. In addition, I will attach the following document on the subject - and - which is co-authored by Dr. Michael Seidman (those who pay attention to names will know he has been involved with the AM-101 trial...).
thanks, about this supplement in that document i found this:
Compelling evidence exists from experiments
in the authors' laboratory demonstrating that aged rats supplemented with
a diet rich in phosphatidylcholine have improved auditory sensitivity when
compared with placebo-supplemented rats. Furthermore, study of the
subjects' mitochondrial function reveals a statistically significant improve-
ment in mitochondrial energy production in the treated groups compared
with placebo (Seidman et al, [11])
 
Does the neuroentin klonopin combo not work anymore?
Well I was trying Neurontin + Diazepam instead. Was going to try that for 3-4 weeks to build up in my system but it worked the first day but not after so far. Could have been related partially to distraction as I was very busy. Happy and quiet for a day anyway.
 
thanks, about this supplement in that document i found this:
Compelling evidence exists from experiments
in the authors' laboratory demonstrating that aged rats supplemented with
a diet rich in phosphatidylcholine have improved auditory sensitivity when
compared with placebo-supplemented rats. Furthermore, study of the
subjects' mitochondrial function reveals a statistically significant improve-
ment in mitochondrial energy production in the treated groups compared
with placebo (Seidman et al, [11])

Maybe this should be moved to the thread about the supplement but this claims they improve their hearing?
 
Btw i was told indonesia will get a license to sell trobalt this month (under the brandname potiga). My contact there will inquire as soon as they sell it if they will do this without prescription.
 

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