Retigabine (Trobalt, Potiga) — General Discussion

[Telis]

Im not coming to my own conclusions, it states right on that link that it can cause possibly irreverible vision that is permanent. And if some one is thinking about taking this that would actually care about that and not risk it, then thats all im saying. Anyone that doesnt care, then best of luck!

Ok thanks

 

[Mpt]

My father in law spoke with a neurologist who said that this drug hasn't damaged anyone's sight, even long term users, its just that it has caused eye pigment changes in about 30% of long term users, eye pigment changes can be a precursor to degeneration of eyesight... this dr thought the worst case downside for the minority of users who have these changes would be that it might speed up the age related sight deterioration that everyone experiences, but that's it

 

[Mpt]

Telis.... no it hasn't come back, i had been able to hear it in a silent room when plugging my ears with my fingers, but this morning I plugged my ears in my silent bedroom and listened for probably 30 seconds or so and I wasn't able to discern any sound at all

 

[Telis]

Telis.... no it hasn't come back, i had been able to hear it in a silent room when plugging my ears with my fingers, but this morning I plugged my ears in my silent bedroom and listened for probably 30 seconds or so and I wasn't able to discern any sound at all

Wow...that's great. I'm definitely going to give this a shot if I can get it. Hope I can post the same results as you some day soon. What a life changer it must be! I honestly can't even imagine what it would be like to get out of this hell.

 

[Christian78]

Hi Zimichael,

Potiga is still under patent-- I'm taking it in pill form, no compounding... the only side effect I notice is that I'm a little more tired at the end of the day after returning from work-- which I actually don't mind-- its not significant. My father in law said from what he's read and gleaned from a conversation with a neurologist colleague is that the eye pigment changes occurred in less than one third of patients who took this at least 900mg a day over a long time period (>5 years), these changes have been hypothesized to maybe result in degeneration of sight even though that hasn't occured in any of the patients with eye pigment changes-- so to answer your question I'm going to stay on this indefinitely, my father in law seems to agree as long as its working I should keep taking it, I am going to get an eye exam soon, and will have one every 6 months following to track any eye pigment changes

Can you tell me how many days did you took medicine, did you start with 900 (3x300mg) directly or you introduced to high dosage, did you try lower dosage?

 

[Ike]

Also considering taking it now.Think of making an appointment with a neurologist to hear what he thinks.I mean at the end of the day its also a drug that was meant to treat a condition and has been approved/released as such.What if a good drug in reseach for tinnitus such as autifony is released with such or even worse side effects? If retigabine has for epilepsy who is to say that a tinnitus drug will not? (Surely this drug also passed its phase I testing).Which leads me to think that almost any drug thats designed to target the brain should have some tricky side effects.So its either I make a decision whether to take this or not to take any drugs for this condition even in the near future because waiting for a very safe drug in this regard might be tricky.
Its a very tough one.I have to really think things through.So confused at this stage...................

 

[Johno]

Maybe try to take it only for a while, for example - 1 month. Only to try if it works... And than gradually reduce the dose, finally stop it. Maybe good effect would be permanent... I am thinking about this, but with low dose 3x100mg per day.

 

[dan]

http://www.ncbi.nlm.nih.gov/pubmed/21640740

So drugs that inhibit tinnitus by acting on the KV3.(1-7) family in animals/humans :

Lidocaine
Retigabine
R-Maxipost
Aut00063

promising...

 

[Telis]

This might sound really stupid but...looks like there are sites where you can just order meds. Are these sites legit? Or is this even legal? Canadadrugsonline.com for example looks like you can just select Trobalt, pick you dose and pay.

Anyone have any experience with this?

 

[Mpt]

another day of silence... I slept without masking sounds last night for the first time since January... it took me longer than normal to fall asleep because I had become accustomed to falling to sleep to cricket noises and white noise, I woke up in the middle of the night and didn't even want to fall back asleep I just layer in bed and enjoyed the silence if my room for about 20 mins, the only sound I could hear was the quiet breathing of my wife as she slept

 

[jazz]

This might sound really stupid but...looks like there are sites where you can just order meds. Are these sites legit? Or is this even legal? Canadadrugsonline.com for example looks like you can just select Trobalt, pick you dose and pay.

Anyone have any experience with this?

You need to be cautious about buying drugs online. There are a lot of bogus sites that offer inferior or adulterated versions of drugs. That said, see these article about buying drugs safely online:

http://www.mayoclinic.org/healthy-l...buying-prescription-drugs-online/art-20045982

http://www.medicinenet.com/script/main/art.asp?articlekey=47206​

And read these articles from the FDA:

http://www.fda.gov/Drugs/ResourcesF.../BeSafeRxKnowYourOnlinePharmacy/ucm294167.htm

http://www.fda.gov/Drugs/ResourcesF.../BeSafeRxKnowYourOnlinePharmacy/ucm318486.htm​

Personally, I would get a physician to prescribe Retigabine. Besides neurologists, psychiatrists also prescribe anti-convulsive drugs.

 

[Telis]

another day of silence... I slept without masking sounds last night for the first time since January... it took me longer than normal to fall asleep because I had become accustomed to falling to sleep to cricket noises and white noise, I woke up in the middle of the night and didn't even want to fall back asleep I just layer in bed and enjoyed the silence if my room for about 20 mins, the only sound I could hear was the quiet breathing of my wife as she slept

Wow! I hope you are for real Mpt! This all almost sounds too good to be true!!

Hope you don't work for the drug company or something like that!! Haha

 

[Philip83]

Mine was from getting my ear syringed, about 2 hours later while standing in the shower a siren went off in my ear... after onset the shower was pretty much the only time during the day I didn't hear it after that.. I heard it pretty much everywhere else 24/7...

@Mpt May I ask what "style" of sound your T is/was? What frequency, hissing, a steady tone or/unstable, etc?

 

[RichL]

Mpt, I'm not trying to be negative or a doubter but are you for real? I only ask because your profile with no photo is pretty anonymous and part of me is wondering if your just fucking with us or you have an agenda and then the rest of me is pretty damn excited mate!
I would like to know for sure before I even think about pursuing this!

Rich

 

[lapidus]

Mpt is for real I can assure you @RichL , just look at his postings. No fake user would go through all that trouble. And Retigabine isnt designed for T, so it's not like he's promoting some snake oil like Ginko. He has nothing to gain economically by promoting this stuff anyway.

 

[Johno]

Ok, who is next? I will try it, but not now exactly (i must find a job or sell my car, Trobalt is expensive) . Than i reffer

 

[Mpt]

no I'm not fake, I have posted over 100 messages since january, and in a number of them I'm sure my desperation is palpable... Phillip 83... it varied but 90% of the time it was tonal, about 4hz and I heard it 99% of the time, I would also get a reactive shearing sound when exposed to loud noise

 

[Johno]

no I'm not fake, I have posted over 100 messages since january, and in a number of them I'm sure my desperation is palpable... Phillip 83... it varied but 90% of the time it was tonal, about 4hz and I heard it 99% of the time, I would also get a reactive shearing sound when exposed to loud noise

I have tonal too - multitonal. in left ear 1150Hz and 1400 Hz... sometimes 3800 Hz. In left ear 1200Hz, 4600 Hz, sometimes 4900 Hz + hissing + like jet turbine (around 3800 Hz, but multitonal).

PS Lidocaine didnt help me. Not a bit. And i was in accute phase, when i got influsion. I feeled only sleepnes.

 

[MarkD]

no I'm not fake, I have posted over 100 messages since january, and in a number of them I'm sure my desperation is palpable...

3 letters in the alphabet doesn't really feed our curiosity. Where are you from? How old? What do you do for a living? How did you get your T?

 

[Mpt]

Im from the US, 35 years old, T for 5 months... mine was from getting my ear syringed, about 2 hours later while standing in the shower a siren went off in my ear

 

[JAKUB]

Im from the US, 35 years old, T for 5 months... mine was from getting my ear syringed, about 2 hours later while standing in the shower a siren went off in my ear

do you think this could work for noise induced T?

 

[cullenbohannon]

I've had many convos with Mpt over my time here. He's been helpful to me. I doubt he's been hanging around just to troll us.

 

[Zimichael]

@Mpt...You seem totally legit to me. Checked your posting history, etc. but hardly needed to as just the way you have been writing stuff up, I just plain could not smell a rat. Plus why bother to make it up? Seems pointless.
However, I understand why it's a worthwhile question and indeed an important one when considering taking a med like this based on an "internet chat board" reference.

Now, totally "talking out of my ear" here (sic). But in regard to toxicity of this drug...Yeah, it looks somewhat unappealing in relation to potential vision and skin colouration effects, etc. in particular. [Here's one link for those who missed it: http://www.fda.gov/downloads/Drugs/DrugSafety/UCM259619.pdf ...and here's another with some photos too - ref. 2013: http://www.fda.gov/downloads/Drugs/DrugSafety/UCM349554.pdf ... and yet another: http://www.drugs.com/pro/potiga.html ].
However, in my long and unfortunate use of a lot of meds during a seven year period of undiagnosed illness I kind of figured a couple of things out regarding meds/prescription drugs...especially in the USA = the land of law-suits. If a drug is really, really bad in regard to dangers and side effects, it is unlikely to be available to the general public in a pharmacy c/o a casual doctor's scrip. This does NOT mean that PLENTY of meds are not toxic and indeed cause death, destruction and all kinds of glossed over crappy conditions. Just read the side effects list for about any drug, OTC or prescription only...it's startling.
Retigabine (Potiga) is made by a major Big Pharma company. My sense is, that if this stuff was liquid jet fuel for eye damage (= a BIG deal...eyes are super important!!!) it would have been pulled. Just too risky with too bad of a target area (vision) to risk selling the stuff. I mean why bother when there are so many other anticonvulsants out there??? How much money could they make of this v. the risks??? It plain does not look like a big mover med. I mean who ever heard of it before this thread?

Like I said, I may be talking trash here, and I am NOT a doctor...but I do know that lawyers love to find irresponsible meds made by big, juicy pharmaceutical companies that they can sue big on behalf of clients. Soooooooo...maybe this drug is worth a spin. For sure I am going to talk to my doc about it next week. Trouble with me though, is I tend to be 'super weird' in relation to meds, and have a certain reputation at this medical practice for just such. I plain don't react to a lot of stuff that I should react to, and do react to stuff that's 'tiddlywinks' nothing for most anyone else. So I am super cautious on this one....but?????

Is anyone else in the process of trying it?! Would be very interested to know - like a lot of us would I figure.

best, Zimichael

 

[benryu]

@Mpt...You seem totally legit to me. Checked your posting history, etc. but hardly needed to as just the way you have been writing stuff up, I just plain could not smell a rat. Plus why bother to make it up? Seems pointless.
However, I understand why it's a worthwhile question and indeed an important one when considering taking a med like this based on an "internet chat board" reference.

Now, totally "talking out of my ear" here (sic). But in regard to toxicity of this drug...Yeah, it looks somewhat unappealing in relation to potential vision and skin colouration effects, etc. in particular. [Here's one link for those who missed it: http://www.fda.gov/downloads/Drugs/DrugSafety/UCM259619.pdf ...and here's another with some photos too - ref. 2013: http://www.fda.gov/downloads/Drugs/DrugSafety/UCM349554.pdf ... and yet another: http://www.drugs.com/pro/potiga.html ].
However, in my long and unfortunate use of a lot of meds during a seven year period of undiagnosed illness I kind of figured a couple of things out regarding meds/prescription drugs...especially in the USA = the land of law-suits. If a drug is really, really bad in regard to dangers and side effects, it is unlikely to be available to the general public in a pharmacy c/o a casual doctor's scrip. This does NOT mean that PLENTY of meds are not toxic and indeed cause death, destruction and all kinds of glossed over crappy conditions. Just read the side effects list for about any drug, OTC or prescription only...it's startling.
Retigabine (Potiga) is made by a major Big Pharma company. My sense is, that if this stuff was liquid jet fuel for eye damage (= a BIG deal...eyes are super important!!!) it would have been pulled. Just too risky with too bad of a target area (vision) to risk selling the stuff. I mean why bother when there are so many other anticonvulsants out there??? How much money could they make of this v. the risks??? It plain does not look like a big mover med. I mean who ever heard of it before this thread?

Like I said, I may be talking trash here, and I am NOT a doctor...but I do know that lawyers love to find irresponsible meds made by big, juicy pharmaceutical companies that they can sue big on behalf of clients. Soooooooo...maybe this drug is worth a spin. For sure I am going to talk to my doc about it next week. Trouble with me though, is I tend to be 'super weird' in relation to meds, and have a certain reputation at this medical practice for just such. I plain don't react to a lot of stuff that I should react to, and do react to stuff that's 'tiddlywinks' nothing for most anyone else. So I am super cautious on this one....but?????

Is anyone else in the process of trying it?! Would be very interested to know - like a lot of us would I figure.

best, Zimichael

I am considering trying 2 or 3 months, the side effects were reported only with poeple who took the drug for more than 2 years, I think it should be relatively safe to give it a go for a short period and see if there is any improvement, and if it lasts.

Now I just have to convince my doctor ( I have an appointment tomorrow at 2pm EST time), if I take it I'll create a thread and update regulary how it works on me. It might be useful for other as I have a pretty std chronic T. caused by acoustic trauma a few years ago.

 

[Philip83]

I am considering trying 2 or 3 months, the side effects were reported only with poeple who took the drug for more than 2 years, I think it should be relatively safe to give it a go for a short period and see if there is any improvement, and if it lasts.

Now I just have to convince my doctor ( I have an appointment tomorrow at 2pm EST time), if I take it I'll create a thread and update regulary how it works on me. It might be useful for other as I have a pretty std chronic T. caused by acoustic trauma a few years ago.

Go @benryu!

 

[Telis]

My appointment is on Wednesday, going to do the same...try and convince him to hand this medication to me. Tricky, I'm sure the doctors like to be the ones advising their patients, not the other way around. Not really sure how to approach this. I will do my best.

 

[Martin69]

I was in the drug store and they don't know Trobalt.
Online also not available here.
I am wondering. I thought in Germany, you get everything.
But I don't know if I would try. I am still on ADs and I don't want to take too much at the same time.

 

[Johno]

Maybe taking a lot of antioxidants with retigabine may help against retina degeneration. For example, Lutein, vit.A, NAC, vit. C, Magnesium....

 

[MarkD]

Im from the US, 35 years old, T for 5 months... mine was from getting my ear syringed, about 2 hours later while standing in the shower a siren went off in my ear

Interesting that a normal procedure like syringing your ears can give you tinnitus.

I'm sure in a lot of cases GPs do the procedure to save sending patients to a specialist which is a lot more expensive then dealing with a government-subsidised GP.

Was it a GP or specialist that did your ears? What did your doctor say when you told him/her they gave you tinnitus?

 

[SoulStation]

My appointment is on Wednesday, going to do the same...try and convince him to hand this medication to me. Tricky, I'm sure the doctors like to be the ones advising their patients, not the other way around. Not really sure how to approach this. I will do my best.

Let me know how u convince your doctor. I would like to do the same.