Member- May 20, 2013
- 394
- Tinnitus Since
- April 2013
- Cause of Tinnitus
- Maybe loud music. Not sure.
Retigabine (Trobalt, Potiga) — General Discussion
- Thread starter Mpt
- Start date
Thats a good idea, specially for those living out from spain. @James White Aut63 is NOT the same thing, and its gonna take (if everything goes well) around 4-6 years to get to the market, thats quite a long time for a T sufferer. Someone with better english than mine could make it? i will sign and spread the word surely.
Besides, the wonder, that the longer time in T, the longer will take to cure I think its pretty truth but nobody knows yet. Thats why I decided to Risk already with Trobalt even my T is totally bearable and I do normal life and sleep good with it.
BTW, it's my second day on Trobalt 100+100+50 and I can confirm you, no side effects at all. yesterday I felt a little tired and paranoid but now i know it was because my after-holyday syndrome and coming back to work. Today I slept better, even not totally deep. I'm happy that probably I will be able to increase dosage with no much trouble.
It's recommanded to check your eyes every 6 months on the drug, i will try to make a date but first i have to go to my GP, wich i dont like at all
I guess they are not doing it because AUT63 is the "same thing" and is the trial
Doesn't matter if it's the same thing or not, retigabine is here, available now, AUT63 not even proven to work yet, still in a pipeline.
It would be good to have some help in the meantime!
Can I please alert everyone to read petition to ATA thread in support section!!!
https://www.tinnitustalk.com/thread...al-to-the-american-tinnitus-association.6896/
https://www.tinnitustalk.com/thread...al-to-the-american-tinnitus-association.6896/
undecided
Member
Don't want to be a downer here but today was quite a bad T day for me.
It seems to have settled now.
Don't put too much faith (or all your faith) in retigabine. It helps, I have felt it and confirmed it.
I just don't think everyone is going to be as fortunate as Mpt has been.
It seems to have settled now.
Don't put too much faith (or all your faith) in retigabine. It helps, I have felt it and confirmed it.
I just don't think everyone is going to be as fortunate as Mpt has been.
It's working for me...I've had tinnitus a much shorter time than mpt and he said, it took a week before results...Mine was like after the first pill. I reckon, it has to do with the time you've had tinnitus...So get it before 6 months.
I've only got a 2 month and a half supply...So when that's gone. But I've been taking it for a week.
- Jul 21, 2013
- 842
- Tinnitus Since
- 01/2013
- Cause of Tinnitus
- Acoustic trauma from headphones
Hey guys, I need some help.
I just got done meeting a well respected doctor from Mass General Hospital. He was a former director there and works in their neurology department. He too has tinnitus (I went there for a consultation, and to discuss Retigabine). He knew what potassium channel stabilizers were, what they are usually for, their downsides, and yet he was very curious/excited ot hear the results some of the users here had gotten.
He wanted to see literature (scientific articles, studies, anything) I could send him related to Retigabine/Potiga/Trobal. Does anyone know if someone has summarized all available literature that we have available yet? He seemed to want to get involved but I can't remember all the scientific articles posted in this thread... anyone who can help, I will be extremely grateful to. I will be forwarding this thread & and that information to him.
I just got done meeting a well respected doctor from Mass General Hospital. He was a former director there and works in their neurology department. He too has tinnitus (I went there for a consultation, and to discuss Retigabine). He knew what potassium channel stabilizers were, what they are usually for, their downsides, and yet he was very curious/excited ot hear the results some of the users here had gotten.
He wanted to see literature (scientific articles, studies, anything) I could send him related to Retigabine/Potiga/Trobal. Does anyone know if someone has summarized all available literature that we have available yet? He seemed to want to get involved but I can't remember all the scientific articles posted in this thread... anyone who can help, I will be extremely grateful to. I will be forwarding this thread & and that information to him.
@Danny Boy
Glad to hear that it is working for you.
Eyes are better now! that is fantastic
@undecided has only had it since april 2014 so not much time before you.
How long has undecided been taking it for and at what dose.
What would be really good on this thread would be if possible could people posting put at the top or bottom of their posts -- when they started with retigabene and on what dose they are now. So we can see as the time progresses how much the dose has been lowered or raised or stayed the same and for how long.
This would save so many from asking for the same info that was probably provided further back in the thread. People get lazy to start trawling backwards and when a thread becomes multiple pages it really can be a pain to find past information.
(same as in am 101 thread) there are more and more people involved in these trials and one forgets who did what when. Not intentionally but just difficult to remember it all.
At some point in the potentially near future, we may need to collate the data on this thread (as wanting to do in the am 101 thread which is 1200 pages long. It will make it so much easier to be able to see the when start and current dosage in the post. And of course will make it much easier to understand to everyone reading it too.
Many thanks to all
Glad to hear that it is working for you.
Eyes are better now! that is fantastic
@undecided has only had it since april 2014 so not much time before you.
How long has undecided been taking it for and at what dose.
What would be really good on this thread would be if possible could people posting put at the top or bottom of their posts -- when they started with retigabene and on what dose they are now. So we can see as the time progresses how much the dose has been lowered or raised or stayed the same and for how long.
This would save so many from asking for the same info that was probably provided further back in the thread. People get lazy to start trawling backwards and when a thread becomes multiple pages it really can be a pain to find past information.
(same as in am 101 thread) there are more and more people involved in these trials and one forgets who did what when. Not intentionally but just difficult to remember it all.
At some point in the potentially near future, we may need to collate the data on this thread (as wanting to do in the am 101 thread which is 1200 pages long. It will make it so much easier to be able to see the when start and current dosage in the post. And of course will make it much easier to understand to everyone reading it too.
Many thanks to all
@Champ
there is a list of users and when they started and on what dosages and progress reports. It is the users experiences at the top of the list below...Not all who have tried it have posted in this section but most are now i believe.
Other than that, I think that it is a case of trawl through, read the posts print off or make notes and open the links to some scientific papers provided by members.
Unless someone has created a file on this yet?
If you go onto @Mpt threads you can find a lot there and on to @benryu who has been particularly informative to the forum.
hope this helps
@attheedgeofscience may also have some interesting stuff to provide if asked...
there is a list of users and when they started and on what dosages and progress reports. It is the users experiences at the top of the list below...Not all who have tried it have posted in this section but most are now i believe.
Other than that, I think that it is a case of trawl through, read the posts print off or make notes and open the links to some scientific papers provided by members.
Unless someone has created a file on this yet?
If you go onto @Mpt threads you can find a lot there and on to @benryu who has been particularly informative to the forum.
hope this helps
@attheedgeofscience may also have some interesting stuff to provide if asked...
@Champ, search for locoyeti's posts on this thread using the search box at the top. The best article was a paper on the imaging studies that found hyperactivity in tinnitus patients and a comparison of 4 Kv openers. The other one you want for sure was the mouse experiment from U. of Pittsburgh. Also bring him up to speed on AUT00063. You might google Dr Charles Large (Autifony's CEO) and include a paper he co-authored about a clinical trial of Retigabine.
@undecided, how long have you been at 900mg/day? Would you consider increasing your dosage?
@undecided, how long have you been at 900mg/day? Would you consider increasing your dosage?
undecided
Member
@rtwombly no friggin way.
This stuff messes with your brain. I'm serious. Also seriously thinking about quitting.
Right now I still feel some of the side effects, 3 hours after taking the drug. I'm feeling dumb and getting dumber every day. Pretty silent though.
Don't really know how to go on from here. I'm slowly gonna taper down.
This stuff messes with your brain. I'm serious. Also seriously thinking about quitting.
Right now I still feel some of the side effects, 3 hours after taking the drug. I'm feeling dumb and getting dumber every day. Pretty silent though.
Don't really know how to go on from here. I'm slowly gonna taper down.
@amandine good idea, but i have a better one: everyone in Trobalt, post their dosage and effects on his own profile, in the section "Profile Posts", like i did on mine. So no more need to ask, just go to the user's profile, will be like a diary
@rtwombly I sent privately that document to @Champ , it's a paid document, and I think the more technical and useful we have had here
Now a doctor questions (@Dr. Nagler ) :
@rtwombly I sent privately that document to @Champ , it's a paid document, and I think the more technical and useful we have had here
Now a doctor questions (@Dr. Nagler ) :
- Apparently I have no side-effects(now on 100+100+50), but it seems that I pee less than before (less times a day or less amount) , is that because of Trobalt?. or could be just because i stopped taking NAC?
- Yesterday after dinner i drank a Rooibos tea, wich is diuretic, few hours later my T seemed to increase a little (rooibos never made increase my T before). So 3 hours before my next pill, my T seemed louder, could that be because Rooibos made quit Trobalt from my body faster, before the next pill ?? Then at 4am i took another 100mg pill and this morning i woke up with T very very low.
- Another question: when I went to sleep, i kind of felt my heartbeats stronger, is it just my paranoid?
Hi, my name is Ricardo. I am from Switzerland (German speaking part of the country). I have been taking trobalt for two and half months last summer (July, august and September, 3x300 mg), before I had to stop because of severe kidney problems (renal failure). It also messed with my job... poor concentration, amnesia... At that point I felt I was "cured" (virtually no tinnitus). Three weeks after discontinuation tinnitus came back with vengeance. Now it is back to the point it was. Central tinnitus is even a little bit worse. I just don't what to do now... resume at a lower dosage or just wait. My renal function has recovered, albeit not 100%. I have tinnitus since May 2014.
@Ricardo - thanks for posting about your experience with Retigabine/Trobalt. Sorry to hear that you had to discontinue the drug due to kidney problems. I was also interested in your comments about the effects of the drug upon your ability to work. I guess there are many of us who are keenly following the discussion about Trobalt but not currently using the drug due to (i) difficulty obtaining it (ii) concerns about effect upon physical health and (iii) concerns about how it would affect our day-to-day functioning and ability to do our jobs.
Unfortunately, there is no easy answer to your current dilemma about whether to resume usage but I think that Autifony envisage that AUT00063 may provide similar beneficial effect upon tinnitus but without the unfortunate side-effects of Trobalt. So there may be some light at the end of the tunnel if you are able to wait for AUT00063.
Unfortunately, there is no easy answer to your current dilemma about whether to resume usage but I think that Autifony envisage that AUT00063 may provide similar beneficial effect upon tinnitus but without the unfortunate side-effects of Trobalt. So there may be some light at the end of the tunnel if you are able to wait for AUT00063.
Hi Ricardo.
I am sorry for this that you had so massive kidney problems.
Some users try Trobalt here, some with success already at lower dosage.
But we only have one member where it was gone even after stopping Trobalt.
It is too early saying something concrete.
When did you feel that your T was lowered? Already on lower dosage?
You are another proof that there seems being something in Retigabine which lowers or stops Tinnitus.
Unfortunately it did not cure your T forever. And there are those side effects. :-(
Schöne Grüße aus Deutschland,
Martin
Not sure if he did a taper, but if he didn't, quitting cold turkey after a 900mg daily dose for 3 months, could trigger tinnitus relapse.
Hey, Ricardo! I have a list of herbs which will help heal your kidney back to normal function. Hope you get better and I wish Autifony's new drug will be fast tracked so we can all have relief without the horrid side-effects.
1. Milk thistle
2. Chanca Piedra
3. Dandelion
4. Uva Ursi (Bearberry)
5. Ginger
6. Turmeric
7. Remannia
8. Coptis
9. Lemon juice
10. Nettle
11. Schisandra berries
I hope that helps.
hi ricardo, thanks for info, some questions if you dont mind
- How was your taper on and off
- On wich dosage started to feel side effects/ wich?
- How can someone identify that is having kidney problems?
- Was the come-back attached to some event, like noisy place?
- Can you rate (1 to 10) and describe your tinnitus and its cause?
@Juan Carlos
thanks for the input.
However I was asking for people to put their current trobalt usage AND when they started on each posting to avoid having to keave the post and go out back to check out the information and then go back into the thread again. It is inconvenient to have to go out and back in again. Plus when collating the added info that people put on their posts in a regular fashion as on here, sucn as feeling good or bad, having a side effect that lasts maybe a couple of days or having a spike that lasts a day or few hours between medication for example, will be written on these posts.
We already have a diary being completed by users of trobalt under the USER EXPERIENCES below this thread. Another diary will be fine and useful.
But if we can see immediately that user is on such and such dosage now and he has been using for x time, we dont need to go out of the thread to read up and then back in again plus we will have much more detailed analysis on this thread for later data collection.
hope that is clearer than mud but i doubt it as i have not slept so may have written this very badly - apologies if i have...
thanks for the input.
However I was asking for people to put their current trobalt usage AND when they started on each posting to avoid having to keave the post and go out back to check out the information and then go back into the thread again. It is inconvenient to have to go out and back in again. Plus when collating the added info that people put on their posts in a regular fashion as on here, sucn as feeling good or bad, having a side effect that lasts maybe a couple of days or having a spike that lasts a day or few hours between medication for example, will be written on these posts.
We already have a diary being completed by users of trobalt under the USER EXPERIENCES below this thread. Another diary will be fine and useful.
But if we can see immediately that user is on such and such dosage now and he has been using for x time, we dont need to go out of the thread to read up and then back in again plus we will have much more detailed analysis on this thread for later data collection.
hope that is clearer than mud but i doubt it as i have not slept so may have written this very badly - apologies if i have...
@PhilB Retigabine interfered hardly withy my ability to concentrate and to work, especially in the 2-3 hours after the morning pill (300 mg). I have a challenging job as law translator German -> French and sometimes I couldn't even find my words or write a sentence. Scary. I tried the highest dosage (3x400 mg) but that was unbearable. I would have lose my job… Supply isn't a big concern for me.
@Martin69 I experienced some relief at a dosage of about 400 mg a day (100 + 100 + 200) but the greatest reduction, the "cure" came with the higher dosage. Ein lieber Gruss aus Bern!
@dan I tapered quite quickly (in a week). A renal failure is a serious condition that you want to reverse as soon as possible. This could explain the relapse. We just don't know.
@Martin69 I experienced some relief at a dosage of about 400 mg a day (100 + 100 + 200) but the greatest reduction, the "cure" came with the higher dosage. Ein lieber Gruss aus Bern!
@dan I tapered quite quickly (in a week). A renal failure is a serious condition that you want to reverse as soon as possible. This could explain the relapse. We just don't know.
Can people not only put on each post:
1. how much is their current dosage on each and every post
2. how long they have been on trobalt - so start date is good
but also"
3. what is their age and when their T started in the first place
4. what caused their T in the first place if known - if unknown or unsure then just put unsure
This should only take an extra moment but should help us all to understand exactly what we are reading at the time without having to go in and out of the postings to search for this info.
This will not only make it much more informative info but will be great for later data collection
Please dont forget that we are looking to do something about this as a group which is why we want this to be more than just a support forum. We could also transform this into an action forum.
Please go to the petition section on retigabene which seems to have disappeared.
Can someone please provide the thread....as it does not appear below at bottom of page and will be forgotten otherwise..
mods - why is this not at the bottom of this page?? @Markku can you help with this please - cheers
https://www.tinnitustalk.com/thread...n-tinnitus-association.6896/page-2#post-77310
here is the thread i mentioned
please mods - can this be put at bottom of this thread where all the other related threads appear
thanks
1. how much is their current dosage on each and every post
2. how long they have been on trobalt - so start date is good
but also"
3. what is their age and when their T started in the first place
4. what caused their T in the first place if known - if unknown or unsure then just put unsure
This should only take an extra moment but should help us all to understand exactly what we are reading at the time without having to go in and out of the postings to search for this info.
This will not only make it much more informative info but will be great for later data collection
Please dont forget that we are looking to do something about this as a group which is why we want this to be more than just a support forum. We could also transform this into an action forum.
Please go to the petition section on retigabene which seems to have disappeared.
Can someone please provide the thread....as it does not appear below at bottom of page and will be forgotten otherwise..
mods - why is this not at the bottom of this page?? @Markku can you help with this please - cheers
https://www.tinnitustalk.com/thread...n-tinnitus-association.6896/page-2#post-77310
here is the thread i mentioned
please mods - can this be put at bottom of this thread where all the other related threads appear
thanks
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