On Retigabine ...

dude, right on, this makes me feel so much better to read this. I started riding a motorcycle after getting T. I always wear plugs, but I do worry about it sometimes... but I don't want to let a stupid condition keep me from doing something that's fundamentally awesome.

 

Would you take some risk in order to treat your T?

 

I miss riding so much ..today I watched them all go by, sadly missing my old self, my old life.

 

I think that ladies that ride their own bikes look so very cool when they ride! I believe that someday you'll be able to ride again, Lynn!

 

aww, thanks JimH! you never know

 

Hey lynn i read ur post that u said u watched ur friends ride off.. The loudness of the bikes didnt set ur t or h off?

 

Not my friends. .other folks..and no I was protected...The real loud Harleys I can hear coming and go into the house.

 

That would depend on how much my tinnitus was bothering me. Back in 1994, I would have cut my own arm off to be rid of my tinnitus.

 

I started riding my bike again @Street Spirit. I have a 1968 HD Shovelhead FLH. I use ear plugs and I bought a 3/4 helmet that has padding on the ears and a full face guard to cut down on wind noise. If I insert the earplugs correctly I am fine. I won't go on really long rides yet but hey, I'm getting there. Don't give up hope.

 

I already wrote this in reply to a question about Retigabine (brand names: Trobalt, Potiga) . This "...is a recently-introduced antiseizure medication. There are some technical reasons why such a medication might be of help in tinnitus - the theory being that tinnitus at some level is seizure activity. There is little scientific evidence to support this but a trial of an antiseizure (aka anticonvulsant) medication is relatively safe. The problem is that modern antiseizure agents (Epival, Lamictal, gabapentin, Keppra) also have some anti-anxiety and mood stabilizing actions so if there is some level of response, it is unclear what is responding - that might not matter to the patient who gets benefit, however. As always, discuss this with your doctor and remember that you might have learnt more about this than that doctor - so be gentle!!"

I have done some more research on this and I would be prepared to consider (1) prescribing this to my own patients, and (2) taking it myself.

Dr. Nagler is quite correct when he advises caution and I agree with him that to know if this will be helpful, we have to wait for proper clinical studies to be carried out, published and then replicated. However, that could take many years so the doctor (and patient) is faced with the same dilemma facing numerous patient in other chronic diseases. What is sometimes forgotten, or even ignored, is that anecdotal evidence (that is: single patient exposure to treatment in a new indication) is often the starting point to persuade researchers and the pharmaceutical company to set up formal clinical studies. The side-effects of retigabine are generally mild and have to balanced against any benefit that might result. The dose is yet to be determined and higher doses bring higher side-effects. Another problems is that Tinnitus is likely the final common result of many different pathologies so the trick might be trying to define the sub-group of T-sufferers that would benefit - that might be many years away.

By the way, in my experience neurologists are not very 'brave' in their prescribing - unless, of course, they too have tinnitus.

 

@Dr. Ancill Ancill , this makes me happy , to hear this . Trobalt definitely works for some people, did for me.
Therefore it makes perfect sense prescribing this drug to people in dire need of relief.

 

1 problem. Trobalt was taken off the market in Canada its illegal for Canadian doctors to prescribe it, you might lose your license.

 

I didn't know that. Did the Canadian authorities give any reason for taking Trobalt off the market?

 

Not true... http://www.hc-sc.gc.ca/dhp-mps/prodpharma/sbd-smd/drug-med/sbd_smd_2012_potiga_134659-eng.php

 

Last year it was impossible to get Trobalt in Canada. I think for the same reason as in Germany.
I even asked a licensed Canadian doctor on this forum to prescribe me some using his USA license but he still refused as I am Canadian. I dont know if things have been changed by Health Canada recently @ady , but last year pharmacies did not carry this drug.

 

That's odd considering Valeant Pharmaceuticals helped create trobalt and they are based in Canada, Montreal.

 

There is some confusion as to whether or not it is available in Canada. Health Canada wanted more info in 2012 but it seems like it was given a notice of compliance in 2014. It may be that it has not yet been launched by the companies -GSK and Valeant. I am investigating.......

 

It'll go off market soon, I bet. The drug is dangerous. Impaired vision is serious business.

 

Ha ha ha!how long is a piece of string?

 

Hi @Dr. Ancill , I am new to the forum. I was alerted to tinnitustalk from a closed group on facebook for tinnitus sufferers. The alert came as a link to the various threads on retigabine that can be found on this forum (treatment section). You mention sub-groups in your post on this page: I wonder if that is related to the following thread?

www.tinnitustalk.com/threads/new-study-on-trobalt-maxipost-in-relation-to-shl-induced-tinnitus.9505

(the last post by @attheedgeofscience mentions something about types of hearing loss, I think - your perspective on this would be appreciated).

I also read several posts from the following thread:

https://www.tinnitustalk.com/threads/retigabine-trobalt-potiga-—-petition-to-the-ata.6896/page-7

Towards the bottom of the page, there is a mention of a study being conducted here on the forum. Does this mean that we will see a treatment for tinnitus soon? thank you.

 

We may see 'treatments' soon, and we already have various medications that can - in some cases - reduce the perception of tinnitus: eg. anti-anxiety and antidepressant medications. Some of the new anticonvulsants may help in some cases -Keppra, Trobalt. There is interest in Vagus Nerve Stimulation that may be helpful but invasive. What we are seeing is a spreading scientific interest in tinnitus that was absent 5-10 years ago, so that must be good news. However, there are no cures on the horizon.

 

That's a depressing though, even though we can't readily get it in the UK it's a kind of comfort to know its out there if things get too bad, or as bad as they were for people like yourself who have struggled to get it and the guts to use it.

 

Well, you can get it in Spain if you wanted to.

 

Yes I know from your post but I kind of thought you meant it would be banned everywhere or something.

I don't understand why it is deemed safe for epileptics but not for tinnitus sufferers. Presumably both are at risks from the side effects, so it looks like the med profession take view that some conditions are more serious than others .

I really wish a big Pharma's would do some research into this, proper double blind trials etc

 

It's a last line drug. It's been recently been a black box labeled drug. They don't just give it to anyone. This wasn't made for tinnitus and they have no plans to repurpose it.

 

But you didnt get impaired vision from it did you?
nor did you get any issues with it except it killed your T? So I dont think anyone had impaired vision from it did they on this forum

I think it is all we have and I think that I am going to have to drive to spain to bhy some for me there - go to do something and even though i have tried to avoid it - it seems like there is no other choice but to take it
Even our good Dr Anvil is willing to prescribe it

OR I can try TRT which I am very happy to try with @Dr. Nagler as the expert therapist on this - and I believe in it too - someone else I know from UK tried it on NHS and found it helped him a lot - but my problem is getting to Atlanta to get to Dr. Nagler who kindly offered me free treatment but I have to get funds for flight etc and hotels etc for Atlanta and return and this only gets cheaper in the winter time

 

"Three days in Atlanta, a lifetime of relief." - was his motto once....

 

I haven't got impaired vision from trobalt?

 

lol that seems kinda weird to say since you took it regularly.

 

He asked what we think, not when. Obviously we can have an estimated time without making a definitive claim, such would be with the length of string.