Member- Jan 25, 2013
- 3,683
- Tinnitus Since
- 2008
- Cause of Tinnitus
- TMJ disorder, airplane barotrauma, noise exposure.
Retigabine (Trobalt, Potiga) — General Discussion
- Thread starter Mpt
- Start date
David077
Member
- Mar 9, 2018
- 174
- Tinnitus Since
- 2013
- Cause of Tinnitus
- stress, benzo/clonozepam + clonidine, maybe infection
Developing Targeted Potassium Channel Openers for CNS-Related Therapeutics
http://www.icagen.com/blog/developi...-channel-openers-for-cns-related-therapeutics
http://www.icagen.com/blog/developi...-channel-openers-for-cns-related-therapeutics
David077
Member
- Mar 9, 2018
- 174
- Tinnitus Since
- 2013
- Cause of Tinnitus
- stress, benzo/clonozepam + clonidine, maybe infection
They possibly have left over stock. But, only 1,500 people were taking it because of the risks involved. So that's why I'm guessing left over stock.
@Danny Boy, it did helped you and how many you took to see improvements? The side effects really affected you??
Tony Joy
Member
I've had tinnitus for years now and the only positive has been using Trobalt. I use it now like an aspirin, as if I had a headache.
I've tried most things and this is the only relief I ever have, so there has to be something positive in it.
It is a shame that it has been discontinued, it was primarily for epilepsy, but the side effects were not good.
This promising drug should be explored and the side effects should be tried to be eliminated.
Fortunately I have enough of Trobalt for several years worth of relief.
I've tried most things and this is the only relief I ever have, so there has to be something positive in it.
It is a shame that it has been discontinued, it was primarily for epilepsy, but the side effects were not good.
This promising drug should be explored and the side effects should be tried to be eliminated.
Fortunately I have enough of Trobalt for several years worth of relief.
As I understand it retigabine has been taken off the market, but is there anyway I can get my hands on this stuff. It seems to work wonders for some people with tinnitus. I would probably cycle its use to prevent serious side effect problems.
Tony Joy
Member
Well @david14433; I have just come back from Malaga in Spain, and it is still available from the pharmacies there, and they are still selling it without a prescription. It is a bit expensive though.
Tinnitus Talk posted this in awareness/worthy causes a little while back but did not seem seem to get much attention.
Essentially, they are redesigning the drug the late Danny Boy used, with the underlying principle regarding potassium(K) for treatment he advocated for.
This deserves a lot more attention. Here is the post, though it is not open to replies on the actual post:
Dr. Tzounopoulos and Dr. Peter Wipf, also from Pittsburgh University, have developed a new compound for tinnitus which is structurally related to the FDA approved epilepsy drug, Retigabine. The new compound, known as RL-81, is now in the pre-clinical test phase which is a required step before human testing is initiated.
Learn more about Dr. Tzounopoulos and his research.
Donate to Dr. Tzounopoulos' research.
Select Designation 'Tinnitus Research' to direct your donation to Dr. Tzounopoulos.
98% of your donation will go to Dr. Tzounopoulos' research.
Essentially, they are redesigning the drug the late Danny Boy used, with the underlying principle regarding potassium(K) for treatment he advocated for.
This deserves a lot more attention. Here is the post, though it is not open to replies on the actual post:
Dr. Tzounopoulos and Dr. Peter Wipf, also from Pittsburgh University, have developed a new compound for tinnitus which is structurally related to the FDA approved epilepsy drug, Retigabine. The new compound, known as RL-81, is now in the pre-clinical test phase which is a required step before human testing is initiated.
Learn more about Dr. Tzounopoulos and his research.
Donate to Dr. Tzounopoulos' research.
Select Designation 'Tinnitus Research' to direct your donation to Dr. Tzounopoulos.
98% of your donation will go to Dr. Tzounopoulos' research.
- Jul 22, 2018
- 49
- Tinnitus Since
- 03/2015
- Cause of Tinnitus
- amitriptyline, hidden hearing loss, whiplash (?), stress (?)
Is there a particular pharmacy there that still has it in stock?
Others have also mentioned finding it in Mexico and Dominican Republic, although that was in 2018.... if any of you are still around and remember which pharmacy you found some, that would be very helpful.
Am trying to find some tablets to try, as a remedy of last resort.... Thanks.
- Nov 19, 2015
- 190
- Tinnitus Since
- 10/2015
- Cause of Tinnitus
- Punch/kick to the right ear
Don't do it. As I wrote before, me and several others got severe visual snow syndrome after short treatment. It's worse than my severe tinnitus. You've been warned.
Retigabine is being redesigned by Dr. Tzounopoulos of the University of Pittsburgh for the treatment of tinnitus. The original drug was not intended for tinnitus and has monstrous side effects as others have mentioned here.
Best thing in the near future is Lenire, and perhaps after that the Michigan device. I see you are in the U.S., you might just have to wait until Lenire gets FDA approval, or if you are willing to fly out there and bring it back and try a personal importation.
I think they would more likely allow a personal importation of a not yet approved device than a discontinued illegal drug.
Offtopic: Bob, I see that your T was triggered by Amitryptiline. My doc wants to try nortriptyline (the sister of ami). Do you discourage it?
- Jul 22, 2018
- 49
- Tinnitus Since
- 03/2015
- Cause of Tinnitus
- amitriptyline, hidden hearing loss, whiplash (?), stress (?)
Appreciate the response, Chris, and agreed - after reading a bit more about the side effects, seems like Trobalt is indeed not worth the risk of developing something worse than T (can't even begin to imagine what that is like... respect to you, Patrick, and appreciate the warning).
To others reading, though, just want to clarify that it is not actually illegal to buy pharmaceuticals abroad (even in large quantities) and bring them back for personal use. Have done this before with Carbamezapine, Cyclobenzaprine, benzos, and other potentially helpful drugs mentioned on here that I wanted to try (without paying a doctor $300 for 5 min consultation and a prescription, as is necessary here in the US), and have spoken to Customs about it. As long as you affirm they are for personal use, and as long as they are not Schedule I (i.e. meth, heroin, etc) you are in the clear. Just an FYI in case someone else wants to go buy Trobalt or anything else that your doctor won't prescribe or isn't sold in the USA, but is easily available in Latin America / Europe / Asia.
I would say if you already have high-frequency bilateral T, it's worth a try. If you have a different kind of T, stay away from it (and all the other tricyclics), even in low doses.
I actually got a new Rx for 10mg Amitriptyline last month after wondering if taking it again, four years later, might help reduce it. The risk of making the T worse was outweighed by the chance of it getting better as has been reported on the forum and in a number of studies (I am getting desperate at this point).
Good news is that Day 1 it actually reduced the intensity by like ~30%, which was fantastic, though I felt a bit drowsy. Took another dose, slept early that day and woke up with it still at the lower intensity.
Day 2, though, I stayed up late watching a movie and playing Xbox, and the later I stayed awake, the more intense my tinnitus got. By the time I went to sleep (~2am) it was ~50% worse than baseline. Woke up the next morning and it was still worse. Took about a week of good sleep and low stress, with no more amitriptyline for it to get back down to normal, and haven't touched it again since.
Overall takeaway is that Amitriptyline seems to amplify the effect of sleep/stress level on tinnitus... so if you do take it, be sure to sleep on time and keep away from stress while you're on it.
This makes a lot of sense in retrospect, too - when my tinnitus started in 2015, I was sleeping ~3-5 hours a night due to violent and unstable roommate + inhabitable rat-infested dorm room (freshman year of college), just catching ZZZs where I could in the library or computer lab. The doctor at the college health service prescribed 10mg amitriptyline to "help with sleep." A week into taking it, the tinnitus just randomly appeared and has unfortunately been permanent at that level (and gotten worse with loud noises) ever since.
Without high stress/lack of sleep, I don't think amitriptyline would have caused the permanent tinnitus - hence why most cases in literature report cessation of tinnitus as a side effect once the drug is stopped. In the few reported cases where it ends up being permanent (like this one, in which a lady prescribed 10mg amitriptyline for neuralgic foot pain ended up with permanent high-frequency tinnitus after just 3 days of taking it...), I have a hunch that there is some concomitant component of stress/sleep deprivation/PTSD that they are ignoring.
I not available anymore. Trobalt has very hard side effects that why it was discontinued. I tried it myself and it gave me some of the more quiet days i had ever had and at some points i thought it might cure me. Soon i realized that the effect is only transitory and you have to keep raising the dosage. it finally affected my eyesight (floaters) so i stopped. Yes before you tell me that you rather had floaters than tinnitus, i will tell you me too but at the expense of more side effects and the effects of trobalt on tinnitus been transitory and dosage dependent i can 100% tell you that knowing what i know now i would not take it. I do think that the more successful road will be something related to trobalt but without the side effects because it indeed works (there was at least in my case a direct relation of taking trobalt and my tinnitus going from 7-8 of ten to zero!!!!). its a shame that more serious studies at least to my knowledge, are not being done for drugs similar to trobalt that might alter tinnitus perception or production through kv channels.
Apologies for the bump.
I took Trobalt in 2016 for 2 months, 3 x 400mg. It permanently reduced my spike to baseline but never got rid of tinnitus completely. I'm having another spike but only have like 3 weeks worth of supply left, I already used 1 week and it is still lowering my tinnitus (even tough it expired 2 years ago).
I was hoping to add another 1 month of supply. If anyone has some spare left, please let me know as I'm willing to purchase it off your hands.
Thanks.
I took Trobalt in 2016 for 2 months, 3 x 400mg. It permanently reduced my spike to baseline but never got rid of tinnitus completely. I'm having another spike but only have like 3 weeks worth of supply left, I already used 1 week and it is still lowering my tinnitus (even tough it expired 2 years ago).
I was hoping to add another 1 month of supply. If anyone has some spare left, please let me know as I'm willing to purchase it off your hands.
Thanks.
Also gives hope for the treatment that is ongoing through the trials for kids' epilepsy.
Yes. We haven't proved regenerating cochlea can significantly reduce tinnitus. Don't forget tinnitus is a brain issue. Not everyone gets tinnitus with hearing loss. No reason to not have more options.
Travis Henry
Member
- Mar 12, 2022
- 428
- 41
- Tinnitus Since
- 10/2021
- Cause of Tinnitus
- 1 Moderna Vac, Noise and stress I guess, its killing me
People that have used Retigabine, where are they now? And how are they doing? Benefits from the short time using it? Are they mostly dead? Lasting side effects?
I need to know. I'm at the end of my rope.
EDIT a day later:
Guess everyone's better or dead that took Retigabine.
I need to know. I'm at the end of my rope.
EDIT a day later:
Guess everyone's better or dead that took Retigabine.
- Aug 21, 2014
- 5,052
- Tinnitus Since
- 1999
- Cause of Tinnitus
- karma
I took it for a few weeks. I thought it was super fucking weird and then it caused me pelvic floor muscle problems that persisted for 2 months.
I'm still alive and as far as I know I may still have most of a bottle of Potiga locked up with drugs somewhere. It's expired, I think it's dangerous garbage, and if it didn't already get turned over to the cops during the last "dump your prescription meds" event, it will be next time.
It's not a panacea. @Danny Boy is indeed dead, though, not Potiga related as far as I know.
I don't think it does anything for my tinnitus that substantially less dangerous GABAergic drugs don't also do, and I think the primary mechanism that Potiga caused relief by may have as much to do with GABA as potassium channels.
Travis Henry
Member
- Mar 12, 2022
- 428
- 41
- Tinnitus Since
- 10/2021
- Cause of Tinnitus
- 1 Moderna Vac, Noise and stress I guess, its killing me
Thank you for your time.
Any thoughts on XEN1101 in general?
My tinnitus is very somatic and I feel Clonazepam is worsening my tinnitus and hyperacusis. I'm banking on XEN1101 as my only shot at getting some life back. My tinnitus and hyperacusis have me completely homebound and I'm suffering 24/7. My tinnitus is screaming louder than most could stand, it feels like.
RIP @Danny Boy. Hope I am not next. I am only 39 and have lost all hope.
I took Retigabine for over a year. While on the drug, it killed my tinnitus and seemed to help with my hyperacusis. It also improved my mood. It has a weird kind of 'high' like effect, but not as inhibiting as THC or alcohol. I had an ophthalmologist monitor my eyes before, during, and after doing a visual exam, OCT, and dilated fundus photography. No negative effects on my vision, although at higher dosages I did notice some visual side effects a few times that were dose dependent.
It's difficult to say if it had a long term improvement on my tinnitus, but it helped me habituate to it. That is until my tinnitus got even worse and I added on new tones for unrelated reasons long after discontinuing. Had it not been discontinued, I would have been tempted to keep taking it.
Your mileage may vary. Some people did seem to get long term side effects even after discontinuing the drug.
I'm curious, when you say it "killed" your tinnitus while on it - Was it gone gone or at a really low level?
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