Retigabine (Trobalt, Potiga) — General Discussion

[Juan Carlos]

Nobody in Dominican Republic pharmacies speaks any English-i called like 5 pharmacies and they all hanged up when I spoke English.
If anybody here speaks Spanish and is willing to inquire for me about Trobalt availability and if can be bought without prescription,
these are the numbers:

http://www.arshumano.com/app/do/guia_search.aspx?mode=farmacies&txt=

I contacted via email/web-form, after some questions, they answered my question, saying that Retigabine is not in their list on "available drugs" and, even if they had it, you would need a prescription from the doctor.

Here I paste the last email received:
El medicamento Retigabina o Trobalt no posee cobertura, a la fecha no está registrado en listado de los medicamentos cubiertos por la ARS. Por otro lado en caso de requerir un medicamento que este dentro de la cobertura este debe de ser indicado por el médico tratante y la indicación debe poseer firma y sello del médico, con esta indicación se dirige a la farmacia con su carnet e para que pueda adquirir el producto.

 

[dan]

I contacted via email/web-form, after some questions, they answered my question, saying that Retigabine is not in their list on "available drugs" and, even if they had it, you would need a prescription from the doctor.

Here I paste the last email received:
El medicamento Retigabina o Trobalt no posee cobertura, a la fecha no está registrado en listado de los medicamentos cubiertos por la ARS. Por otro lado en caso de requerir un medicamento que este dentro de la cobertura este debe de ser indicado por el médico tratante y la indicación debe poseer firma y sello del médico, con esta indicación se dirige a la farmacia con su carnet e para que pueda adquirir el producto.

Thank you for this information Carlos.
It seems clear to me now that no pharmacy in the world will release this drug without a prescription.

 

[Juan Carlos]

Thank you for this information Carlos.
It seems clear to me now that no pharmacy in the world will release this drug without a prescription.

I could go to jail now, but nobody mentioned to make a fake prescription to order online, just an idea..

 

[Christian78]

If you can't focus very close objects, that's a disfunction of ciliary muscle, it's used to focus near objects, almost all old people can't focus very near objects so thats why they use glasses to read and so, even when they had good vision all previous life. I guess it's a temporary effect related to muscles, maybe its too relaxed. Anyways, to be sure I would slowly taper off you are very worried about that.
How long have you been in max dosage? I think mtp was 2 months it that true? if you have been 2 months already you can taper off and see if some T. changes become permanent, and also see if side effects go away, in that case you can start again with a strict dosage plan. That were only my suggestions/advice, you take your decisions.
Wish you all the best

Hi,

Nether me or mpt were on max dosage. max dosage is 400 x 3 per day =1200mg a day

 

[Christian78]

I think i will continue to slow down because this medicine does not effect memory only, but also strength, and strongly vision too.. and about autifony many said that they should start trial phase 2 4 weeks, but as you will see from email I got from dr largue this is just on of many trials in phase 2

" As mentioned above, this is the first trial in subjects with tinnitus, and we
need to take one step at a time as we test the effects of "063". If all goes
well in this study, we will aim in future to broaden out into testing the
drug for people who suffer from different kinds of tinnitus, including
those who have had the condition for longer."

"We have to be very careful to test the medication in a uniform group of
subjects whose tinnitus is relatively similar. So we need to have quite
tight eligibility criteria. For example, the tinnitus must not have become
too long-term (6 – 18 months is OK) and must not be too extremely
severe."

 

[amandine]

@Christian78

Please may I put this on the public forum. I think that you have been through and are going through quite a lot. Most people on here (not all the people) you are correct merely want info from you without too much caring involved. I would like to say here that personally I think you are probably the bravest and most stoic person I have ever known and I wanted to say a huge thank you to you.
I personally do worry and care about you and hope and trust that you will be so much better very soon.
Lots of members on this forum now are attempting to get or have gotten this Retigabine and are about to start or have just started this treatment. My heart goes out to all of you. Leading from the front as has done Christian and others here. Rather than pathetic useless people like me who does not know what to do and sits and reads and is now desperate lurking ALL day on this forum. This action alone is making me worse, I am sure, as T has become my whole life and quite frankly I am sick sick sick of it and feel now no hope not only for the future but even just for today.
Please to all, keep up your posts and advance always great respect to all our forum members such as Christian here who are willing to go the extra kilometre or mile to not only cure themselves but to put out their experiences practically on a daily basis in spite of difficulties such as Christian has described. We should all understand how much effort Christian has put into these posts and we should all be grateful to him.
Just wanted to put this out on the public forum even though I know that it has little value apart from to say thank you - but sometimes in life an acknowledgement and a thanks is what we need.

 

[rtwombly]

@Christian78 thanks for that information from Dr Large. That's interesting for the question of why they want people with hearing loss too. Please post on the Autifony trial thread too, if you don't mind. Many people have wondered about that.

@Johno, saw your User Experience. Glad you got your supply issues resolved and I hope you continue to improve. It was interesting you mentioned Trobalt for awhile and noticing areas of improvement that stayed with you that you had not realized while on the drug consistently.

Currently I'm back on the trail, with a call in to my neurologist for a new appointment.

 

[bedouin]

That's interesting for the question of why they want people with hearing loss too. Please post on the Autifony trial thread too, if you don't mind.

Hey rtwombly,
I'm a bit confused here. I only saw the response from Autifony (compliments of Chistiaan) on the autifony thread: Here:
https://www.tinnitustalk.com/posts/74754/
Did a search and can't find anything on this Retig thread. Was it removed?

I'm just very keen to see what additional info, if any, they responded to, icw hearing loss. Any additional info? There was no mention of it in the Autifony response post on the autifony thread.

 

[Christian78]

@Christian78 thanks for that information from Dr Large. That's interesting for the question of why they want people with hearing loss too. Please post on the Autifony trial thread too, if you don't mind. Many people have wondered about that.

@Johno, saw your User Experience. Glad you got your supply issues resolved and I hope you continue to improve. It was interesting you mentioned Trobalt for awhile and noticing areas of improvement that stayed with you that you had not realized while on the drug consistently.

Currently I'm back on the trail, with a call in to my neurologist for a new appointment.

I posted on Autifony tread first. but there is entire document Dr. Large sent me about questions and answers.

https://www.tinnitustalk.com/thread...ing-loss-and-tinnitus.6516/page-17#post-74754

there is only this missing:

Dear Mr. Christian,


Many thanks for your interest in above study and really sorry for any inconvenience we may have caused you. Please find attached our response to FAQs for your information. Please feel free to contact us for any queries you may have.


Kind Regards,
Charles

Charles Large, PhD.
Chief Executive Officer
Autifony Therapeutics Limited

 

[bedouin]

I posted on Autifony tread first. but there is entire document Dr. Large sent me about questions and answers.

https://www.tinnitustalk.com/thread...ing-loss-and-tinnitus.6516/page-17#post-74754

there is only this missing:

Dear Mr. Christian,


Many thanks for your interest in above study and really sorry for any inconvenience we may have caused you. Please find attached our response to FAQs for your information. Please feel free to contact us for any queries you may have.


Kind Regards,
Charles

Charles Large, PhD.
Chief Executive Officer
Autifony Therapeutics Limited

Thanks Christian. Yes, that was the same one i read. I still don't know what rtwombly was on about then, re hearing loss. There is no mention in the reply you got back from Autifony re hearing loss. No new info re hearing loss, other than what we already know.

That's interesting for the question of why they want people with hearing loss too.

rtwombly - can you explain what you meant here, in the context of the reply Christian got back from Autifony?

 

[Christian78]

Thanks Christian. Yes, that was the same one i read. I still don't know what rtwombly was on about then, re hearing loss. There is no mention in the reply you got back from Autifony re hearing loss. No new info re hearing loss, other than what we already know.

rtwombly - can you explain what you meant here, in the context of the reply Christian got back from Autifony?

Well Autifony conditions are

6-18 months old t, can be from noise or medicine
hearing loss 20db on lower frequency 500-2khz and up to 60 db loss on upper freq 6-9khz

I hope other know this too because we got this info before, people can confirm it. @dan ?

Rate informative if you know that this info is right!

 

[Danny Boy]

Well Autifony conditions are

6-18 months old t, can be from noise or medicine
hearing loss 20db on lower frequency 500-2khz and up to 60 db loss on upper freq 6-9khz

I hope other know this too because we got this info before, people can confirm it. @dan ?

Rate informative if you know that this info is right!

Those conditions are rather silly!? Do they think they can reverse hearing loss or something?

 

[amandine]

@Christian78

My only confusion with this is that apparantly there can be normal hearing loss due to age of person in those mentioned upper freq 6 - 9 khz within those db ranges. So how does this mean then that this hearing loss is due to acoustic trauma for example or just natural age related hearing loss? Or perhaps this is irrelevant or I have not understood correcly. If it is just me being stupid, please accept my apologies.
Hope you are feeling better today Christian?
Hope your T is still down?

 

[bedouin]

Those conditions are rather silly!? Do they think they can reverse hearing loss or something?

yes - that is exactly what they think. This drug is also targeting hearing loss.

 

[Danny Boy]

yes - that is exactly what they think. This drug is also targeting hearing loss.

Hearing loss? Ok so now this drug can regenerate hair cells in the ear?

 

[bedouin]

Well Autifony conditions are

6-18 months old t, can be from noise or medicine
hearing loss 20db on lower frequency 500-2khz and up to 60 db loss on upper freq 6-9khz

I hope other know this too because we got this info before, people can confirm it. @dan ?

Rate informative if you know that this info is right!

From the NHS clinical trials website:

4. Sensorineural hearing loss (Pure Tone Average (of thresholds at 250, 500, 1000, 2000 and 4000Hz) >20 and <60 dB Hearing Loss (HL)); If a hearing aid or sound generator user, then confirmed consistent daily usage of the device over past 6 months;

However you say:
hearing loss 20db on lower frequency 500-2khz and up to 60 db loss on upper freq 6-9khz

Have you received information to the contrary from Autifony re the hearing loss eligibility criteria? Have they modified their criteria? Please share it if you do.

Not that i qualify for that either. Just my luck! LOL.

Thanks Christian. I hope you are doing well and the Retigabine is not making your feel so dizzy.

 

[bedouin]

Hearing loss? Ok so now this drug can regenerate hair cells in the ear?

I'm no expert so don't take my word for it. My understanding is that Autifony is not regenerative medicine. So it is not regenerating hair cells. My guess is that they believe Kv channels play a role in hearing loss too. But i could be wrong.

 

[Danny Boy]

I'm no expert so don't take my word for it. My understanding is that Autifony is not regenerative medicine. So it is not regenerating hair cells. My guess is that they believe Kv channels play a role in hearing loss too. But i could be wrong.

Tinnitus I understand, but hearing loss? I say nay. Anyway, if that was true then trobalt would have a similar effect, so has anyone's hearing improved with trobalt?

 

[bedouin]

Tinnitus I understand, but hearing loss? I say nay. Anyway, if that was true then trobalt would have a similar effect, so has anyone's hearing improved with trobalt?

Hey Danny Boy. Autifony targets Kv3 and Retigabine Kv7 so they are not the same drug. They just both potentially have the ability to kick open the potassium channel gates. We don't really know what is inside AUT00063 so we are really all just guessing.

They do aim to trial 63 for both tinnitus and hearing loss. If you have a look back in thread, there was a time when they were going to have 2 separate trials. One in the UK for tinnitus and one on the US for hearing loss. That changed and they are now having one in the UK for t (with a hearing loss component).

From the emails back from Autifony to various TT members, it is still their intention to do a US trial and trials abroad, pending a successful outcome of this one. This is my understanding of the lay of the Autifony landscape thus far.

Please anyone chime in if i am way off here.

 

[David S]

Tinnitus I understand, but hearing loss? I say nay. Anyway, if that was true then trobalt would have a similar effect, so has anyone's hearing improved with trobalt?

Danny, bealive they want to be sure of a hearing cell damage. Hearing lost typically is. They do not whant any somatic caused T to mess their studie up.

 

[Danny Boy]

Danny, bealive they want to be sure of a hearing cell damage. Hearing lost typically is. They do not whant any somatic caused T to mess their studie up.

You still can have good hearing and hidden hearing loss, so that's rather silly...

 

[Danny Boy]

Hey Danny Boy. Autifony targets Kv3 and Retigabine Kv7 so they are not the same drug. They just both potentially have the ability to kick open the potassium channel gates. We don't really know what is inside AUT00063 so we are really all just guessing.

They do aim to trial 63 for both tinnitus and hearing loss. If you have a look back in thread, there was a time when they were going to have 2 separate trials. One in the UK for tinnitus and one on the US for hearing loss. That changed and they are now having one in the UK for t (with a hearing loss component).

From the emails back from Autifony to various TT members, it is still their intention to do a US trial and trials abroad, pending a successful outcome of this one. This is my understanding of the lay of the Autifony landscape thus far.

Please anyone chime in if i am way off here.

I thought trobalt had affects on the other potassium gates, hence why there are many side effects?

 

[bedouin]

I thought trobalt had affects on the other potassium gates, hence why there are many side effects?

You'll have to scroll back in the posts to see benyru. He has a firm grasp on the science of Kv and glutamate. The guy is taking time out so we don't get his informed posts anymore. However, from what I have gleaned from reading about Kv channels, trobalt affects the inter-spike interval mainly via the Kv7 channels. The side effects are a result that as an anti-epileptic it can cause problems in these channels and affect the organs in other parts of the body. Hence the concern around the side affects of Trobalt. We are all hoping that Autifony acts superiorily on these channels - sniper rifle as opposed to missile launcher.

 

[Christian78]

Those conditions are rather silly!? Do they think they can reverse hearing loss or something?

I thing they want people who can not react on sounds and bad hearing also makes tinnitus, so they want someone like me, that hearing is typical mine. Sometimes those problems are connected with T strongly, but i have one ear ok and other bad...

 

[Christian78]

@Christian78

My only confusion with this is that apparantly there can be normal hearing loss due to age of person in those mentioned upper freq 6 - 9 khz within those db ranges. So how does this mean then that this hearing loss is due to acoustic trauma for example or just natural age related hearing loss? Or perhaps this is irrelevant or I have not understood correcly. If it is just me being stupid, please accept my apologies.
Hope you are feeling better today Christian?
Hope your T is still down?

i am on 250+250+200. it is better, my mental state is kinda more important that t now. and if t is strong even after dosage i just add 50 mg pill and it is ok.

 

[Christian78]

From the NHS clinical trials website:

4. Sensorineural hearing loss (Pure Tone Average (of thresholds at 250, 500, 1000, 2000 and 4000Hz) >20 and <60 dB Hearing Loss (HL)); If a hearing aid or sound generator user, then confirmed consistent daily usage of the device over past 6 months;

However you say:
hearing loss 20db on lower frequency 500-2khz and up to 60 db loss on upper freq 6-9khz

Have you received information to the contrary from Autifony re the hearing loss eligibility criteria? Have they modified their criteria? Please share it if you do.

Not that i qualify for that either. Just my luck! LOL.

Thanks Christian. I hope you are doing well and the Retigabine is not making your feel so dizzy.

Well as I remember we got that info over guy who few months ago said trial will be 1 month and what criteria is needed. Guy had a ENT working inside Autifony. @dan can confirm.

we did not believe it is going to just 1 month, and i sad it is suspicions, but after his info was right.

 

[lapidus]

Well as I remember we got that info over guy who few months ago said trial will be 1 month and what criteria is needed. Guy had a ENT working inside Autifony. @dan can confirm.

we did not believe it is going to just 1 month, and i sad it is suspicions, but after his info was right.

No I think you might have misunderstood that part. The trial time for each and every patient will be 1 month (4 weeks). But the trial itself can take a very long time. They are not testing it on all patients at once.

 

[Christian78]

https://www.tinnitustalk.com/threads/retigabine-trobalt-potiga-—-user-experiences.6047/page-2#post-75177

there is my last rapport. Hope some of you who dont understand can read it. Medication supplements are mine choice.

I hope I don't get advice from dr. Mengeler, i find him bit overly.. i don't know... God syndrome,.. So well, maybe is just me, I wish that we say is truth and we all can habituate but it is hard

 

[rtwombly]

@Danny Boy The reason 063 might help with hearing loss is that some hearing loss is from processing, not hair cell damage. The sound comes in, makes it to the brain, but the brain can't "hear" it because the neurons are stuck in the "on" position. It's like being in a room with a lot of windows and somebody switches the lights on. If it's a bright day outside you might not even notice, but if it's night you'll know immediately. The sound is the light switch, hyperactivity is the sun. Open potassium channels are blackout curtains.

@Christian78, great report, thank you. Hey, can you always post in that first 40 minutes after dose when you love everybody? We can all be happy together!

 

[amandine]

@Christian78

Thank you so much for making me laugh right out loud today. I just read your post....
dr. Mengeler....so funny and so true and so honest - thank u for bringing laughter into my life today.
You are not afraid to say or do are you? Most people do not have your strength. Well done I say as i chuckle away here....dr mengeler indeed.....