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Retigabine (Trobalt, Potiga) — General Discussion

@Danny Boy

What about AM 101, any chance of doing that now?

Zero...I chickened out the first time round, as was scared about the eardrum perforation, then tried at a second centre and they said, because of last time, they wouldn't allow me on it...And they discovered about the first time, due to my GP telling them...
 
I don't know...What I don't understand is if I've been taking the drug and it makes me feel 100% better, then why can't he just prescribe it?
You have to tell that to your doctor! Look him in the eye at say it like you mean it and you won't leave until he takes his prescription pad out.
Put some pressure on.
Edit: your doctor sounds like a major arsehole for ratting you out to AM101 - find another doc fast. You have NHS system, make it work for you.
 
This Kv7.2/3 is to me, a much more "generalized function" and all over the brain too!!! So...it's going to be competing with, interacting with, messing with, a whole bunch of other nuro-transmitters in this soup. God knows how much of the active part of Retigabine for tinnitus is getting left over, to "kick at the doors", after it has been through this maze of competitors and distractions along the way. Maybe hardly any?! Maybe a lot for "less distractable" individual brains?!

from my experience, the effects seem to happen kind of randomly. there are times when a dose doesn't really do much of anything at all, and other times it is super strong.

i agree with some of what you are @Philemon is saying - i am still having occasional spikes, i seem to be having a similar experience to him. last night i went to the gym and afterward had a predictable high pitched spike which would not relent. woke up with it in the morning as well. had to delay my morning dose because of a conference call for work, so was still suffering from the spike for a small period of time. then i took my 400mg pill, and then i found 'relief', the t went down. i don't know how much of that to attribute to the fact that the drug also lightens your mood (the 'high'), though it is probably significant. the reason i am saying all of this is that maybe we need to rethink dosage in its entirety. i am beginning to question if we even need a constant concentration of this in our blood at all. why not just use this like one would use aspirin? this mornings dosage seemed to work in that fashion (it had been 12 hours since my last dose).

for those of us with variable t, which includes me, i wonder what the purpose is of taking the drug on good days. it almost seems gratuitous. i also have had this strange occurence, only a few times, where i wake up with low t but upon taking my dose i have a slight increase in t, almost as if there is something like an 'overshooting' effect. this is speculative, i think @cdog and i chatted about this, but it is possible that there is a sweetspot dosage, and perhaps finding that dosage will be trial and error on each trialees part.

if anyone knows a pharmacist who could weigh in on all of this that would be great.

as for me, i am getting decent results from this drug, but i am still getting spikey days, which means that whatever is causing t variability is not being addressed (at least, for me). i think sleep might be the key to variability, but not in just a straight forward way of getting as much sleep as possible. it may be that the quality of sleep is very important. the fact that lucid dreams seem to occur on this drugs further bears this connection.
 
I don't know...What I don't understand is if I've been taking the drug and it makes me feel 100% better, then why can't he just prescribe it?

As I'm sure you are aware, Retigabine is not EU-approved as a treatment for T. It is only EU-approved as a treatment for epilepsy and even then doctors are urged to exercise caution in prescribing it. This means that your doctor would be taking a serious risk by prescribing Retigabine and I am not aware of anybody in the UK who has been successful in persuading their GP to prescribe it as a treatment for T. If you were to have an accident and ended up in hospital, they would carry out tests and find the drug in your body. They would be able to establish that you had been prescribed the drug for a non-standard (or "off-label") purpose and this would leave your GP with some serious explaining to do.

Doctors think about protecting their own professional reputations before they think about anything else and you cannot really blame them for that.
 
You have to tell that to your doctor! Look him in the eye at say it like you mean it and you won't leave until he takes his prescription pad out.
Put some pressure on.
Edit: your doctor sounds like a major arsehole for ratting you out to AM101 - find another doc fast. You have NHS system, make it work for you.
I'll try my best!

Well, he won't even give me antidepressants, he won't give me anything for the tinnitus...I don't understand why he's making it so hard for me...I remember when I went to him, when I first had tinnitus, he said he won't refer me to an ent until 3 months in...

As I'm sure you are aware, Retigabine is not EU-approved as a treatment for T. It is only EU-approved as a treatment for epilepsy and even then doctors are urged to exercise caution in prescribing it. This means that your doctor would be taking a serious risk by prescribing Retigabine and I am not aware of anybody in the UK who has been successful in persuading their GP to prescribe it as a treatment for T. If you were to have an accident and ended up in hospital, they would carry out tests and find the drug in your body. They would be able to establish that you had been prescribed the drug for a non-standard (or "off-label") purpose and this would leave your GP with some serious explaining to do.

Doctors think about protecting their own professional reputations before they think about anything else and you cannot really blame them for that.

So how will I get trobalt then? I'm basically screwed...

Wait a second...They prescribe amitriptyline for sleep, so why can they do that?
 
Plan A.Try to get him to prescribe you more (he did let you try it afterall)
Plan B.Get a referal to a neurologist (they have a lot more prescription power)- tinnitus falls under neurology so its your right to get referred or you tell your GP you will be filing a complaint with the board...scare tactics as last resort only.
Plan C.Find a country like Italy or Spain that you can get it there.
 
@Danny Boy because you have not some measurable hearing loss your HF T will stop.
Are you smoking ? smoking can induce or make worse HF T.(alcohol/mj/drugs etc)
Go to another doctor take exams perhaps your infection is not resolved.
Tell your doctor about steroids.
I think you are in wrong way with trobalt you have so good hearing something other happens
I bet all my money that poor sleep and panic make the problem huge.
 
@Danny Boy because you have not some measurable hearing loss your HF T will stop.
Are you smoking ? smoking can induce or make worse HF T.(alcohol/mj/drugs etc)
Go to another doctor take exams perhaps your infection is not resolved.
Tell your doctor about steroids.
I think you are in wrong way with trobalt you have so good hearing something other happens
I bet all my money that poor sleep and panic make the problem huge.

I don't smoke, nor drink, alcohol never have and never will...Just that when I take trobalt I feel amazing, it gets rid of that high pitch frequency nice and I'm left with a subtle ring noise which is super easily maskable by the tv and just general noise..This stuff I need, otherwise I'm in grave danger to myself. That 15,000 hz screech is unbearable...Truly is...

Plan A.Try to get him to prescribe you more (he did let you try it after all)
Plan B.Get a referral to a neurologist (they have a lot more prescription power)- tinnitus falls under neurology so its your right to get referred or you tell your GP you will be filing a complaint with the board...scare tactics as last resort only.
Plan C.Find a country like Italy or Spain that you can get it there.

He never prescribed it to me, I got it off a member on here.
 
@Danny Boy because you have not some measurable hearing loss your HF T will stop.
Are you smoking ? smoking can induce or make worse HF T.(alcohol/mj/drugs etc)
Go to another doctor take exams perhaps your infection is not resolved.
Tell your doctor about steroids.
I think you are in wrong way with trobalt you have so good hearing something other happens
I bet all my money that poor sleep and panic make the problem huge.
Would be nice if HF T would stop, but it doesn't.
I have it for 14 months now. I am in the same boat as @Danny Boy
High-pitched T (somewhere around 15 kHz). Very difficult to handle.
Got prednisolon injections in the beginning. Did nothing for me.
I do not panic (most of the time) and I sleep 8-9 hours every night without interruption.
No smoking, no alcohol, no drugs, no infection, nothing.
I know neurologists and GPs here in Germany.
But Trobalt is not available here. Maybe I will import.
 
@Danny Boy
I can relate to your frustration with doctors, I've been hitting one brick wall after another.
My family dr, who has been treating my family for 17 years now, said I don't have tinnitus! WTF!!!!!?????
Then please cure me of whatever else is making this noise in my head!!
Then you go to others and the washing cycle continues with more money down the drain!
Sadly a lot of them just don't take us seriously or understand how devastating this condition is:(
 
@Philemon, it sounds like you may have had a plastic adaptation and am on the way to being able to taper down and keep the benefit. I hope so, and hopefully the spikes you have had will settle down in time.

I hope so, but it's bit early to be sure about ... but yeah, improvments on my T seems to be somehow deconnected, or not directly connected to the dosage i take - oppositely to the beginning of my treatment - and hopefully improvments may last even when i'll stop taking trobalt ... but still it's early (i just took trobalt for a bit more than 3 weeks) and i'm not planning to taper down soon

Well, so far we have only one example to follow. A Mtp did well leaving it progressively. His tinnitus did not return Trobalt slowly leaving. Can you beat a retreat from work, but that risk if we already have a positive experience gradually letting?

i'm not sure i fully get you, but my experience seems to be quite different from Mpt's one, sure i have good improvments thanks to trobalt, but it doesn't seem to be as steady as Mpt's improvments ... sure when i'll be tapering down, i'll dot it very gradually but i'm not planning it for now, i'll more keep on with trobalt, and doing a few dosage experiment to see if i could find an optimal one for me
 
@Danny Boy
I can relate to your frustration with doctors, I've been hitting one brick wall after another.
My family dr, who has been treating my family for 17 years now, said I don't have tinnitus! WTF!!!!!?????
Then please cure me of whatever else is making this noise in my head!!
Then you go to others and the washing cycle continues with more money down the drain!
Sadly a lot of them just don't take us seriously or understand how devastating this condition is:(
Yes Val. Don't expect anyone understands who has NO T. Not even a doctor.
And I even met doctors with T and they do not understand why I have such a difficult time with it.
So even a doctor with T does not always understand. I guess this is because their T is mild, but I don't know.
The only one who really understands is for example Dr. Nagler since he has severe T.
And to make things even more difficult, I myself sometimes don't know if only T is my problem or a normal clinical depression or anxiety. I am sure, without T things would be much, much better.
But sometimes I think, my depression would be even there without T. I don't know.
But back to the topic now. Markku already said that we should not go off-topic.
 
Another piece of interesting information, a bit old though, don't know if anyone has posted it before
Activation of voltage-gated KCNQ/Kv7 channels by anticonvulsant retigabine attenuates mechanical allodynia of inflammatory temporomandibular joint in rats

Conclusions: Our findings indicate that central sensitization is involved in inflammatory TMJ pain and
pharmacological intervention for controlling central hyperexcitability by activation of neuronal KCNQ/M-channels may have therapeutic potential for TMDs.


As we know TMJ and tinnitus somehow has relation, the story is getting more interesting
 
Why is that? Surely you can find a GP somewhere else. I don't know how the health care system works over there but go private if you need to. Having a good, understanding GP makes a huge difference when dealing with tinnitus.

Wish I could go private, but money is lacking.
 
Attention! Someone on a Benzo withdrawal support site experimenting with Potiga also independently reported significant improvement of her benzo-induced T with it. She only takes Potiga 2 times a week

"Actually, very well. I only take 600mg twice a week. My T is better than ever. The side effects scare me so I am taking it easy. I did a titration experiment with potiga and crushed the pill and put it into water. I drank to simulate a taper dose,,,,,,,, HOLY SMOKES, it hit me like 4 Xanax!! Then I read the bottle DO NOT CRUSH PILLS! I guess they are time release without saying "XR".
It's a anti seizure drug so it's no wonder it behaves like a tranquillizer.

From what I have read online some think pushing the potassium channel can send the DNC back into healing mode repairing a chemical imbalance. Like taping on a loose nail to drive it back in to the right spot (I think that is what the headache means but I really do not know)

Also read you can't mix potiga with gabapentin or Valproic acid!!! So I quit gabapentin too.

Ears are the best ever with the 2 times a week potiga treatments. I know its working since the potiga gives me a headache and during the potiga headaches the T is very low. I stopped for a week and the T is still lower than before. So far it's working for me.

I REALLY suspect that potiga must be addictive so I take it only twice a week and then once a month washout for 7 days. When I took the crushed powder I knew it was an abuse-able drug!!

Potiga ultimately manipulates calcium via the K channel but in a different way than a benzo manipulates calcium. Let's call it OPPOSITE of a benzo, kind of."

@xanaxvictim thanks for this, very interesting indeed ... could you please give us the direct link of this testimony ? it would be interesting to read i guess ... i've found the website http://www.benzosupport.org/index.htm but there's no search function in it, even a google search didn't give back something ... so if you still have the link, it would be much much appreciated i guess
many thanks anyway
 
Today after 118 days I must say that my tinnitus reached 11/10 and it is unbearable. I have raised dosage to moment that my hands shake, i a more that dull invalid with Alzheimer. I use acrn to put it on 9,5 but it is lousy, and I know the evening will be terrible. Trobalt don't give me sleep as before. I am scared to imagine to taper down I beleave my T will be doubled. That is my success story. Retigabine channel modulator 7,1-7,4 did function 118 day.

I dont know what to do say. I am disabled to speak and chat and I feel terrible.
 
@xanaxvictim thanks for this, very interesting indeed ... could you please give us the direct link of this testimony ? it would be interesting to read i guess ... i've found the website http://www.benzosupport.org/index.htm but there's no search function in it, even a google search didn't give back something ... so if you still have the link, it would be much much appreciated i guess
many thanks anyway
http://www.benzobuddies.org/forum/index.php?topic=96554.950

@Christian78 sorry to hear that, that's also why I hesitate when it comes to discussing with my Doctor about the possibility of off-label Trobalt. I'm wondering are you the only one using Trobalt long time (2 months+) who gets bad result (with respect to T)?
 
Probably its time for u to taper down.
@Zimichael experienced the same issue. His t got worst but it dropped down as soon as he started to tapper.

Today after 118 days I must say that my tinnitus reached 11/10 and it is unbearable. I have raised dosage to moment that my hands shake, i a more that dull invalid with Alzheimer. I use acrn to put it on 9,5 but it is lousy, and I know the evening will be terrible. Trobalt don't give me sleep as before. I am scared to imagine to taper down I beleave my T will be doubled. That is my success story. Retigabine channel modulator 7,1-7,4 did function 118 day.

I dont know what to do say. I am disabled to speak and chat and I feel terrible.
 
Well, maybe we need to reconsider the dosage approach? I am still taking a break, and in fact I am going to try and use this only when my T is unbearable. Two reasons I am doing it this way , I do not want to build tolerance and I like the sense of control of being able to do something when its really bad.

Maybe , Christian78 would have better results if not using such an high dosage , it seems that with increasing dosage there is a diminishing return?
Maybe it works better for ototoxic damage then acoustic trauma or the other way around.
It does have some kind of effect for sure....still a bit of a mystery.

I got 99% silence yesterday not using any Retagabine ?
Its kind of bad today but only brain T , no tones?
I am baffled ?
 
Well, as insane as that sounds , silence make me super stressed ...waiting for it to hit again is so depressing.
10 minutes of "silence " and I start to make plans , planning my return to music etc.
And then....sigh.

yes , I had one day of silence ca a week before starting retagabine.
I am mostly dealing with brain T these days, tones are super low and almost inaudible.

EDIT: Having said that, silence sure is sweet :)
 
Same situation here. Would definitely like to be a lab rat of AUT 00063 but I don't have hearing loss.

a little birdie told me that it's possible to 'fix' your audiograms. if you have moral qualms about lying, then ignore the birdie. but we at TT have a problem. unless one of us gets in the trial, it is possible that we won't know anything about its efficacy until they release information, which may be a very very long time. just sayin.

Another piece of interesting information, a bit old though, don't know if anyone has posted it before
Activation of voltage-gated KCNQ/Kv7 channels by anticonvulsant retigabine attenuates mechanical allodynia of inflammatory temporomandibular joint in rats

Conclusions: Our findings indicate that central sensitization is involved in inflammatory TMJ pain and
pharmacological intervention for controlling central hyperexcitability by activation of neuronal KCNQ/M-channels may have therapeutic potential for TMDs.


As we know TMJ and tinnitus somehow has relation, the story is getting more interesting

great, we have another researcher. great find. i can verify that i 'sort of' feel that effect (i have a TMJD component). my jaws seems to be less tense and i feel some interesting things happening to the muscles around that area. hard to truly verify but i can say that i am experiencing some of that.
 
I went to a different doctor today. This doctor syringed my ears in December last year, before I got tinnitus. I was telling him about the past few months. It turns out he has tinnitus too! I told him all about retigabine and he looked it up online and he saw the medical benefit it could have. He gave me a prescription for it! However, it's a very low dose. It says 50mg x30 on it so I think it's a 30 day dose of 50 mg, which isn't high at all unfortunately. He said if it helps in any way, I should go back to him.

Now that I have found a doctor willing to prescribe this to me, does anyone have any advice on how to get on a higher dosage if the drug helps me at all? I'm going to start taking it tomorrow after work and I will post in the user experiences thread.
 

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