theekarwash
Member
- Jun 22, 2014
- 158
- Tinnitus Since
- 05/2014
- Cause of Tinnitus
- Noise and/or Ear Infeciton
Retigabine (Trobalt, Potiga) — General Discussion
- Thread starter Mpt
- Start date
Sent you a PM, as I'm not sure this is the right thread to go into detail. Anyone else can feel free to send me a message if they're interested.
SoulStation
Member
Just a bright side to not being on this drug- I feel like myself way more then I did when taking RTG. I will say my T is a bit more reactive and a little louder than it was on RTG- but that drug is a NASTY thing for me and I feel better off it even if my T is up a little bit.
Memberi have been on 400mg tid for about week. i feel as though the same pattern persisted in 300mg tid: a few days of profound improvement, and then day and half of spiked higher pitched t in a purified tone. there were one or two days when i felt as though there was no effect at all, not even the sedation, which is strange. hard to explain that. on those days, it seems like trobalt is not having any effect. for instance, this morning i had super low t and yesterday i had a spike that had started from the workout i had the day before. trobalt hit me hard this morning even on already low t, but did nothing yesterday. hard to say that my brain is 'getting used to it', but rather taking the drug is hit or miss in terms of effect, for me at least.
the fact that this drug is not affecting my t oscillations (good days, bad days) is disappointing. i am definitely not on the @Mpt track of improvement. there are just so many different ways that t presents, at the cellular or connectivity level perhaps, that it may only work for certain people. we don't seem to have a proper catalog of all the different types of t (what we have now seems very crude), so we just don't know. On such a hypothetical list, I probably don't have the same type of t that Mpt has.
the effect of the drug may be a total reduction of volume, the greatest part of taking the drug for me were the good days - it was so damn great to hear (near) silence again. also, my hyperacusis has basically gone away. i am still gonna take this for the next three weeks (regret minimization), and then taper off in a rather quick fashion, starting next year (probably 100mg reduction every 3 days). depending on whether there is pigmentation in my eyes and also if there was a permanent effect for me, i may decide to do a second round next summer, in more optimal conditions. for those that are considering doing this trial, i'd say that if i had chronic t, like 2 or more years, i'd be more inclined to wait and see what shakes out regarding autifony. for those that have very recent tinnitus, i think that it is possible that this drug may help, particularly if chronicity is a big factor. i took this drug about 9 months into my t, Mpt took his 5 months in. maybe that is a big factor. @Danny Boy has had really good improvement on very low dose of 100mg TID (which did nothing for me). i'd love to see what this drug does for someone that has had t for less than a few months. i think the side effects issue (kidney, retinal pigmentation) has been pretty overblown on this thread- we are only taking this for a few months. if you are a hypochondriac, then this drug is definitely not for you. if you are a bit more adventurous, i think giving this drug a go for a few months may be worth the risk. the silent days are wonderful (so is the 'high'). also, it brings into stark clarity what exactly your t consists of. and who knows, you might hit the Mpt lottery and get some lasting improvement. that is still very much an open question, we are still in the early stages of this.
the fact that this drug is not affecting my t oscillations (good days, bad days) is disappointing. i am definitely not on the @Mpt track of improvement. there are just so many different ways that t presents, at the cellular or connectivity level perhaps, that it may only work for certain people. we don't seem to have a proper catalog of all the different types of t (what we have now seems very crude), so we just don't know. On such a hypothetical list, I probably don't have the same type of t that Mpt has.
the effect of the drug may be a total reduction of volume, the greatest part of taking the drug for me were the good days - it was so damn great to hear (near) silence again. also, my hyperacusis has basically gone away. i am still gonna take this for the next three weeks (regret minimization), and then taper off in a rather quick fashion, starting next year (probably 100mg reduction every 3 days). depending on whether there is pigmentation in my eyes and also if there was a permanent effect for me, i may decide to do a second round next summer, in more optimal conditions. for those that are considering doing this trial, i'd say that if i had chronic t, like 2 or more years, i'd be more inclined to wait and see what shakes out regarding autifony. for those that have very recent tinnitus, i think that it is possible that this drug may help, particularly if chronicity is a big factor. i took this drug about 9 months into my t, Mpt took his 5 months in. maybe that is a big factor. @Danny Boy has had really good improvement on very low dose of 100mg TID (which did nothing for me). i'd love to see what this drug does for someone that has had t for less than a few months. i think the side effects issue (kidney, retinal pigmentation) has been pretty overblown on this thread- we are only taking this for a few months. if you are a hypochondriac, then this drug is definitely not for you. if you are a bit more adventurous, i think giving this drug a go for a few months may be worth the risk. the silent days are wonderful (so is the 'high'). also, it brings into stark clarity what exactly your t consists of. and who knows, you might hit the Mpt lottery and get some lasting improvement. that is still very much an open question, we are still in the early stages of this.
SoulStation
Member
I don't know if you've seen any of Danny's posts after about a week on 100. He went up to 600 mg then got suicidal and jumped up to 1200 mg a-day. Not trying to say he didn't have the improvement but I know it didn't last.
@SoulStation
Dannyboy was on 100mg x 3 a day in the beginning for a week or so equals 300. Fine
Then he went up to 200mg x 3 per day equals 600. Not fine
Then he jumped 500mg x 2 plus 200 x 1 equals 1200 per day - now very fine apart from a few blips.
Dannyboy was on 100mg x 3 a day in the beginning for a week or so equals 300. Fine
Then he went up to 200mg x 3 per day equals 600. Not fine
Then he jumped 500mg x 2 plus 200 x 1 equals 1200 per day - now very fine apart from a few blips.
my point was about efficacy at low doses. i didnt have any effect at low dose, and that is the case for most people that have tried it.
SoulStation
Member
1MW
Member
- Nov 25, 2014
- 614
- Tinnitus Since
- 2008 but cured and relapsed from benzos
- Cause of Tinnitus
- ssnhl/benzos/unknown
After 100 days some report that drug it is not working and they seem worsening in T symptoms.
Is this drug ototoxic have anyone measured his hearing with audiogram before and after taking retigabine ?
Perhaps the mechanism of worsening after 3 months use is further damage to hearing.
T intensity depends on momentarily deafferentation of hearing maybe is only
temporary deafferentation due the chemical changes but maybe be permanent.
For this reason will be good before taking retigabine a high frequency audiogram
and monitoring of hearing especially for high frequencies because ototoxic drugs
hit first high frequencies.
From my observation before a T spike occurs i have i slight and temporary hearing loss
for example iam hearing room noise and sudden the volume of this noise goes down and after 1
second T spike occurs and fade out in some seconds during T fading out hearing become better
and i hear again the room noise.So my theory is hearing and T have a relation per second basis
and not for long times as some believe.
Many paradoxes have been reported that some with T when they taken ototoxic antibiotics had
a temporary improvement in T intensity.
99% people with T witch take ototoxic drugs have worsening in T intensity.
Is this drug ototoxic have anyone measured his hearing with audiogram before and after taking retigabine ?
Perhaps the mechanism of worsening after 3 months use is further damage to hearing.
T intensity depends on momentarily deafferentation of hearing maybe is only
temporary deafferentation due the chemical changes but maybe be permanent.
For this reason will be good before taking retigabine a high frequency audiogram
and monitoring of hearing especially for high frequencies because ototoxic drugs
hit first high frequencies.
From my observation before a T spike occurs i have i slight and temporary hearing loss
for example iam hearing room noise and sudden the volume of this noise goes down and after 1
second T spike occurs and fade out in some seconds during T fading out hearing become better
and i hear again the room noise.So my theory is hearing and T have a relation per second basis
and not for long times as some believe.
Many paradoxes have been reported that some with T when they taken ototoxic antibiotics had
a temporary improvement in T intensity.
99% people with T witch take ototoxic drugs have worsening in T intensity.
Just an update : it seems that i'm bit on the same track as @locoyeti, meaning 2-3 days of very quiet T (loudness around 0.5) and then one or two days not so good (loudness=1.5 or 2 but with a very bothersome type of noise) … I then also don't seem to be on the same track as the one @Mpt experienced, or maybe i just need to be on the drug for a longer period of time, or maybe there's other variables in the equation (like the slightly noisy environment i'm living in), i don't know … but anyway my T is definitly better than before i started trobalt
anyway, until yesterday i was only at 200mg tid 'cause i was tapering up again after my involuntary break of last week end (see former posts) … today i just jumped into 200mg four times daily, i'll see if it has a different effect on my T … i will maybe test other dosage schedules if i need to, and anyway i won't taper down before a month or two, as i tolerate well the drug for now (even the last 300mg i took on empty stomach didn't really hit me)
i also think the side-effects issues have been quite overblown in this thread and i'm a bit sorry about that … ok we all react differently to the drug and everybody who is starting trobalt should do all the monitoring needed, but it's worth to try i think 'cause it's likely to give significant improvement, and maybe there's a chance to get lucky as mpt has been (especially if the T is quite new maybe, as locoyeti said for more chronic case it's maybe better to wait for other solutions if they come) … i'm also willing to give it another chance maybe next spring or summer, but i'll still to have to think about it
anyway, until yesterday i was only at 200mg tid 'cause i was tapering up again after my involuntary break of last week end (see former posts) … today i just jumped into 200mg four times daily, i'll see if it has a different effect on my T … i will maybe test other dosage schedules if i need to, and anyway i won't taper down before a month or two, as i tolerate well the drug for now (even the last 300mg i took on empty stomach didn't really hit me)
i also think the side-effects issues have been quite overblown in this thread and i'm a bit sorry about that … ok we all react differently to the drug and everybody who is starting trobalt should do all the monitoring needed, but it's worth to try i think 'cause it's likely to give significant improvement, and maybe there's a chance to get lucky as mpt has been (especially if the T is quite new maybe, as locoyeti said for more chronic case it's maybe better to wait for other solutions if they come) … i'm also willing to give it another chance maybe next spring or summer, but i'll still to have to think about it
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!
1MW
Member
- Nov 25, 2014
- 614
- Tinnitus Since
- 2008 but cured and relapsed from benzos
- Cause of Tinnitus
- ssnhl/benzos/unknown
I have not taken retigabine to know from first hand the effects&side effects but from your posting i can understand that retigabine has some mood boost effect and can make suicidal idealization.
I 'm happy for you dany boy I hope this medicine will get out us of this hell.
@Danny Boy did this get rid of your sound sensitivity also and when you're on the trobalt doesn't the T start creeping back In when you are nearing the time for your next dose of the day or are you T free at all time when on the trobalt?
Do you think this drug is more effective on the young people than on older ?
dany I think you are the youngest who tried Trobalt.
Another study project being looked into by Autifony and what their Kv3 compounds can target, wonder what else they are looking into using these compounds for ?
http://www.findaphd.com/search/ProjectDetails.aspx?PJID=50043
http://www.findaphd.com/search/ProjectDetails.aspx?PJID=50043
Christian78
Member
- Dec 17, 2013
- 965
- Tinnitus Since
- (Sep 2013)
- Cause of Tinnitus
- progressive tinnitus, time of expiring in next 3-6 months
my experimentation with 4 times a day did not go well. i think 3 times a day yields better results, at least for me. why that is, i don't know. maybe the efficacy of the drug needs at least some clearance of the prior metabolized molecules. let us know how that goes.
Christian78
Member
- Dec 17, 2013
- 965
- Tinnitus Since
- (Sep 2013)
- Cause of Tinnitus
- progressive tinnitus, time of expiring in next 3-6 months
Strange today i have t ca 5/10 300x3 dosage, if i sleep well then it is better, but for sure trobalt lost initial effect and must beware of stress but i cant type well.
- Aug 14, 2013
- 2,455
- Tinnitus Since
- Resolved since 2016
- Cause of Tinnitus
- Unknown (medication, head injury)
Locoyeti, add a few more words like that in your next summary, and you are headed straight for the Nobel Prize in Medicine & Physiology next year...
Guaranteed!
(And well done for being the first on the board to reach the "magic" 1200mg limit per day!)
can't tell if you are being sarcastic, but i meant 'at least some'. im also pretty damn high right now.
@attheedgeofscience
Hi how are you
Just wanted to add that @Danny Boy is also on 1200mg per day and has been for about four days now. He is doing great without side effects and his T he tells me is practically at zero - just wanted to clarify this. So both @locoyeti and Danny Boy are on 1200mg per day now. Danny Boy is taking it differently - he is on 500 x 2 and 1 x 200 per day. Locoyeti is taking it four times a day but Danny Boy is taking 3 times a day, Locoyeti has it for five months longer than Danny Boy.
Perhaps they should compare to each other and their results....
Hi how are you
Just wanted to add that @Danny Boy is also on 1200mg per day and has been for about four days now. He is doing great without side effects and his T he tells me is practically at zero - just wanted to clarify this. So both @locoyeti and Danny Boy are on 1200mg per day now. Danny Boy is taking it differently - he is on 500 x 2 and 1 x 200 per day. Locoyeti is taking it four times a day but Danny Boy is taking 3 times a day, Locoyeti has it for five months longer than Danny Boy.
Perhaps they should compare to each other and their results....
- Aug 14, 2013
- 2,455
- Tinnitus Since
- Resolved since 2016
- Cause of Tinnitus
- Unknown (medication, head injury)
No, not really. You have put forward a real (theoretical) effort in this; not everyone knows that.
In any event, remember...
"Most people say that it is the intellect which makes a great scientist.
They are wrong: it is character."
--Albert Einstein, physicist
Oh, never mind the typos. I have also had my share of fights with the keyboard while doing the Flupirtine.
Those evil, evil keys...
@locoyeti
sorry locoyeti, thought in the above you said that you were taking it at four times a day but needed to change it to three times a day to get better results. Re read it now and yes you have changed to three times a day so you are as the same as danny boy. However are you taking it in 3 equal parts? like 400mg x 3? Cos danny boy is taking it in 2 large doses and then a much smaller dose.
He danny boy is also quite young in age. I am not sure of your age locoyeti you may be very young or in your thirties. Danny Boy theorises that age makes a difference and that someone in their fifties will have lost their range of ''plasticity'' available in the brain. Therefore the trobalt will be less effective in an older person to a younger person. He also thinks that the length of time someone has T predicts whether the trobalt will work or not ie if you have it under one year then the trobalt will work. I am not sure about any of this but wondered what you and @attheedgeofscience thought about this.
It is known that an 80 year old can have an agile mind like an 18 year old so long as the 80 year old has kept and keeps his mind active and agile.
Any thoughts on the above with regards to trobalt and efficacy?
sorry locoyeti, thought in the above you said that you were taking it at four times a day but needed to change it to three times a day to get better results. Re read it now and yes you have changed to three times a day so you are as the same as danny boy. However are you taking it in 3 equal parts? like 400mg x 3? Cos danny boy is taking it in 2 large doses and then a much smaller dose.
He danny boy is also quite young in age. I am not sure of your age locoyeti you may be very young or in your thirties. Danny Boy theorises that age makes a difference and that someone in their fifties will have lost their range of ''plasticity'' available in the brain. Therefore the trobalt will be less effective in an older person to a younger person. He also thinks that the length of time someone has T predicts whether the trobalt will work or not ie if you have it under one year then the trobalt will work. I am not sure about any of this but wondered what you and @attheedgeofscience thought about this.
It is known that an 80 year old can have an agile mind like an 18 year old so long as the 80 year old has kept and keeps his mind active and agile.
Any thoughts on the above with regards to trobalt and efficacy?
theekarwash
Member
- Jun 22, 2014
- 158
- Tinnitus Since
- 05/2014
- Cause of Tinnitus
- Noise and/or Ear Infeciton
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.
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