so we have albertus and locoyeti experiencing much reduced Hyperacusis after trobalt . I wonder who else.
Retigabine (Trobalt, Potiga) — General Discussion
- Thread starter Mpt
- Start date
Member- Oct 22, 2014
- 240
- 40
- Tinnitus Since
- 10/2014
- Cause of Tinnitus
- Acoustic trauma (club drumming)
Mine went down by a half to a third. I still have to plug when washing up plates, going on the underground and cannot tolerate pubs or car horns still.
However, being able to turn the squeaky tap on in my bathroom without going for plugs is great
Hi TommMine went down by a half to a third. I still have to plug when washing up plates, going on the underground and cannot tolerate pubs or car horns still.
However, being able to turn the squeaky tap on in my bathroom without going for plugs is great
I now live in the UK also
How did you get your trobalt/ any technique I can use?
My gp wants me to go thru a specialist
this is actually pretty encouraging. 18 months seems in between chronic and acute, but still is good evidence that this may work on long term t. i think hazar is chronic as well.
Since I have my T and H for 3 months now, is it safe to say I should start Trobalt ASAP?
Currently I take Neurontin (Gabapentin) which is prescribed due to neurovascular compression indication oth the 8th (acoustic nerve) in my MRI. Needless to say, Neurontin does absolutely NOTHING, although I take it for mearly 2 weeks on full dosage (900mg).
Perhaps a mvd (microvascular decompression) surgery could even cure me, but it is even riskier than Regitabine. And I am not so sure whether my T came from acoustic trauma, neurovascular compression or even both!
Have you guys checked your MRIs for signs of neurovascular compression? I mean, does Trobalt help for such cases too?
Currently I take Neurontin (Gabapentin) which is prescribed due to neurovascular compression indication oth the 8th (acoustic nerve) in my MRI. Needless to say, Neurontin does absolutely NOTHING, although I take it for mearly 2 weeks on full dosage (900mg).
Perhaps a mvd (microvascular decompression) surgery could even cure me, but it is even riskier than Regitabine. And I am not so sure whether my T came from acoustic trauma, neurovascular compression or even both!
Have you guys checked your MRIs for signs of neurovascular compression? I mean, does Trobalt help for such cases too?
Christian78
Member
- Dec 17, 2013
- 965
- Tinnitus Since
- (Sep 2013)
- Cause of Tinnitus
- progressive tinnitus, time of expiring in next 3-6 months
when you say it like this you definitely deserve u hug, it is so funny and so true !!!!! So special guy , I cant stop laughing with my tinnitus ringing
theekarwash
Member
- Jun 22, 2014
- 158
- Tinnitus Since
- 05/2014
- Cause of Tinnitus
- Noise and/or Ear Infeciton
I woke up this morning having taken my only 50mg dose 12 hours before (taken at 8pm, woke at 8am) and my T was at a 1.5/2 - 10, it was unbelievably quiet.
@Christian78 so it sounds like you're winding down your personal experiment with trobalt. I've always had a little bit of a difficult time extracting exactly what you mean from your posts. Has your tinnitus improved with trobalt? Has it returned to the original baseline as you've discontinued your intake of the drug? Hopefully not, but has it worsened? Thank you and I wish all the best for you.
Christian78
Member
- Dec 17, 2013
- 965
- Tinnitus Since
- (Sep 2013)
- Cause of Tinnitus
- progressive tinnitus, time of expiring in next 3-6 months
Team Trobalt has a new member!
Finally all pills arrived in Germany and I have enough supply for all possible dosage schemes for a minimum of 4-6 weeks.
I will start on Saturday with 3x 100mg...
Will fill out new user report soon...
Finally all pills arrived in Germany and I have enough supply for all possible dosage schemes for a minimum of 4-6 weeks.
I will start on Saturday with 3x 100mg...
Will fill out new user report soon...
- Oct 22, 2014
- 240
- 40
- Tinnitus Since
- 10/2014
- Cause of Tinnitus
- Acoustic trauma (club drumming)
- Dec 24, 2013
- 933
- Tinnitus Since
- (1956) > 1980 > 2006 > 2012 > (2015)
- Cause of Tinnitus
- Ac. Trauma & Ac.Trauma + Meds.
Dear ATEOS...I definitely meant the cleaning out the manure! Standing on the shoulders of the giants (of which my Brit boarding school background would be appalled if I did not know thereof) would mean I am already up a ways. Sure does not feel like it! Excuse me if a abused the language...I tend to do that.
@amandine ...well thanks, but a simple explanation for Keppra is going to have to wait. I have not even got to today's PMs and duties and just skimmed through another blistering mind blower of the efficacy of Kv channels on tinnitus c/o the over-night/today's posts! Isn't it insane that we have to wait for bleedin' years to get the "good stuff"!!!???
Amandine, that's the stuff without the supposed "side effects" factor - which by the way, my explanation was a vast generalization I hope you realize. As side effects can also be from "chain reactions/downstream reactions" as a result of a drug, not it's own action per se. So don't get too hooked on my stable boy explanation there. *[For example...and anti-parasitic may kill 'parasite X' and have it's own side effects as a drug, but then you get a ton load of dead parasites to get rid of, that then tax the detox pathways of, say kidneys, or liver...and maybe have you're nauseous so you don't eat, lose weight, and then some crap like DDE (metabolite of DDT few of us escaped) starts coming out of your stored fat cells, to add to the "load", and you feel worse, and......You get the idea?!]
Sorry to be a party pooper, but read my User Reports....My hyperacusis got much worse.
@TomKA ...great, thank you for the photos! It's always nice when folks "show us the music".
Overall, things are looking pretty darn good for increasing the positive data on our score sheet for Retigabine and effect on tinnitus. Please remember to keep filling in User Forms, and as accurately as possible. This data IS being assessed! It will help us all.
Thanks much. Best, Zimichael
I would not jump so quickly and call this a success!
There were others who had the same results but the desired outcome that we all want to see hasn't happened since mpt!
Believe me.....with signs of reduction, even temporarily, this is a success.
What makes it more exciting is that these events are all happening in real time. I have not had the opportunity to experience T news like this before.
Again, I am cautiously optimistic.
I feel we should not be expecting this to kill T off permanently, If it does.....GREAT!
however If I have the option of having to pop a pill everyday or, when I need it to find relief, vs none at all, I know what I ll be taking and I would nt look back!
Peace and Quiet to all
What makes it more exciting is that these events are all happening in real time. I have not had the opportunity to experience T news like this before.
Again, I am cautiously optimistic.
I feel we should not be expecting this to kill T off permanently, If it does.....GREAT!
however If I have the option of having to pop a pill everyday or, when I need it to find relief, vs none at all, I know what I ll be taking and I would nt look back!
Peace and Quiet to all
read this post, it will answer your question :
https://www.tinnitustalk.com/thread...—-general-discussion.5074/page-114#post-83770
but not everyone got it like that ... some ordered it (or tried to) on some website like bluesky something or the canadian pharmacy online ... personally, i went to italy 'cause there i've found a pharmacist who was ok to sell it to me without prescription (even if it's illegal)
just an update : one week ago i was at 200mg four times per day, my T was super stable (like never before, always the same sound) at loudness = 1/1.5 , 4 days ago i went up to 300mg four times per day, the first day was not so stable and spiking a bit, but those last 3 days it's again quite stable around 0.5 or less and with only one or two minispikes at 0.5/1 that lasted only a couple of hours, and also good period of time around 0.1/0.2 ... hope it will stay like this, i'll keep u posted, and fill again the user form in a few days
Thanks for the info.
I would give retigabine a try if I could get it. I don't think my doctor would prescribe it.
@amandine I tried Xanax a few years ago. I bought it online from a site that has now been closed down. It did appear to reduce my tinnitus. My reaction to tinnitus was greatly diminished if nothing else. It only lasted a few months until I built up tolerance to the drug and was unprepared to increase the dose above the 1mg per day I was taking.
In the UK, doctors will not prescribe benzodiazepines for more than a short period in any case.
Let's hope retigabine or a similar substance helps us all
I would give retigabine a try if I could get it. I don't think my doctor would prescribe it.
@amandine I tried Xanax a few years ago. I bought it online from a site that has now been closed down. It did appear to reduce my tinnitus. My reaction to tinnitus was greatly diminished if nothing else. It only lasted a few months until I built up tolerance to the drug and was unprepared to increase the dose above the 1mg per day I was taking.
In the UK, doctors will not prescribe benzodiazepines for more than a short period in any case.
Let's hope retigabine or a similar substance helps us all
- May 20, 2013
- 394
- Tinnitus Since
- April 2013
- Cause of Tinnitus
- Maybe loud music. Not sure.
@James White
Yes xanax she has given me under Alprazolam.
But she cannot find the xanax or Alprazolam xr or slow time release version.
Yes xanax she has given me under Alprazolam.
But she cannot find the xanax or Alprazolam xr or slow time release version.
@Mark662
Yes and they wont prescribe it in the uk for more than a short period of time for a good reason.
That is why I am after the time release version.
This is the preferred one to be prescribed in the UK certainly - it is less addictive as it releases slowly so you take less.
As for me, all I have is Xanax regular of which I pop half a tab (whole tab 0.25mg so half of that) as and when i need it.
So for example, yesterday was fine, T was low and I had slept five hours and the day before around 6.5 hours. This last night I slept less than 2 hours, T is going berserk and I keep having waves of panic roll over me for which reason I dont know. I wonder if it is due to lack of sleep. But I couldnt sleep any more even thought I wanted to. So just lay in bed awake....
Eventually gave up and took half xanax.
Anyone know why this happens?
Anyhow it is off topic -- so sorry......this is the retigavine trobalt thread....
Yes and they wont prescribe it in the uk for more than a short period of time for a good reason.
That is why I am after the time release version.
This is the preferred one to be prescribed in the UK certainly - it is less addictive as it releases slowly so you take less.
As for me, all I have is Xanax regular of which I pop half a tab (whole tab 0.25mg so half of that) as and when i need it.
So for example, yesterday was fine, T was low and I had slept five hours and the day before around 6.5 hours. This last night I slept less than 2 hours, T is going berserk and I keep having waves of panic roll over me for which reason I dont know. I wonder if it is due to lack of sleep. But I couldnt sleep any more even thought I wanted to. So just lay in bed awake....
Eventually gave up and took half xanax.
Anyone know why this happens?
Anyhow it is off topic -- so sorry......this is the retigavine trobalt thread....
I want to be clear...yes I have had some "total silence" since taking potiga but those periods only lasted an hour or two at a time. I hope as I taper up that those times will be more frequent and last longer. What is encouraging to me is the lower volume and less "head noise". A long day of head noise sends me to bed in tears. What I am experiencing now I can almost live with.
Overall, things are looking pretty darn good for increasing the positive data on our score sheet for Retigabine and effect on tinnitus. Please remember to keep filling in User Forms, and as accurately as possible. This data IS being assessed! It will help us all.
I cross we must all be happy .
can us say that tinnitus is beaten at last.
My brother is a general practitioner at Pitié-Salpétrière hospital in paris I think he can prescribe me this drug I have to travel from geneva to paris.
Health foremost
Switzerland, german speak .
can us say that tinnitus is beaten at last.
My brother is a general practitioner at Pitié-Salpétrière hospital in paris I think he can prescribe me this drug I have to travel from geneva to paris.
Health foremost
Switzerland, german speak .
@preslys
This hospital is where they are carrying out the am 101 trials in the ent department of course.
This hospital is where they are carrying out the am 101 trials in the ent department of course.
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