On Retigabine ...

[Dr. Nagler]

This forum and beyond would really appreciate and welcome your opinion and involvement in the Retigabine discussion. One member has found complete relief, some notable veteran members have obtained this med and many others are trying to obtain it.

I have received a number of requests similar to the one above - so I guess some sort of comment is indicated.

Over the past several decades the search for the holy grail of tinnitus pharmacology has taken a lot of twists and turns. Every so often a new "golden bullet" appears on the horizon with great promise - perhaps because of a unique structure, perhaps a unique delivery system, perhaps a unique mechanism of action. Any number of things. I readily recall all the excitement and buzz around Campral a few years back. I recall the subsequent disappointment and fizzle as well. Anyway, I suppose that one of these times, the promise of predictably safe pharmacological tinnitus relief will become a reality. I certainly hope so, anyway.

To me at this point in time, Retigabine is but another in a long line of possibilities. There have been some positive anecdotal reports. And the mechanism of action does have some theoretical appeal. So will this one be the one? I have absolutely no idea. How could I? The tinnitus community has been disappointed so many times in the past, and - lest anybody forget - I am very much a part of that community.

Bottom line? I have simply decided not to have an opinion on the subject.

Please do not think unkindly of me for deciding not to have an opinion. The good news is that were I to believe that Retigabine will ultimately be found to have pharmacological efficacy when properly rested under controlled conditions ... or were I to believe that Retigabine will ultimately be found to be no more efficacious than placebo ... either way, what I might believe would have absolutely no bearing at all on the reality.

Dr. Stephen Nagler

 

[Rico Napoli]

My ENT told me those looking for a cure never get better. Just live with it and you will be fine. 2nd ENT told me to take Lipoflavonoid . I give up ENT are only concerned about surgery on deviated septum or cosmetic nose jobs. They have no clue about the brain or nervous system.

 

[attheedgeofscience]

They have no clue about the brain or nervous system.

That's because the brain and CNS falls within the scope of a neurologist. But I agree with the overall point you are making.

 

[rtwombly]

predictable safe

Well, I hope nobody's fooling themselves on that score. So far it appears to be highly unpredictable and far from safe. But if it can be shown to be effective after a limited term of exposure...then it becomes a risk-reward proposition.

 

[attheedgeofscience]

So far it appears to be highly unpredictable and far from safe.

I believe Dr. Nagler was speaking in general terms, and unrelated to Trobalt, specifically.

 

[rtwombly]

I believe Dr. Nagler was speaking in general terms, and unrelated to Trobalt, specifically.

I understand. Just sharing my observation on the trend in anecdotal accounts. I'm sympathetic to all the doctors who've turned me down for Potiga and I understand why Dr. Nagler is taking this position. However, if we were talking about a drug with no known side effects (and a smaller price tag), I think the burden of proof would be less.

 

[SoulStation]

I have tried so many things as pharmaceutical treatments go and this is the only one that feels like it is really doing something. Though I still believe that flexeril did soften my perception of the Tinnitus. I do feel like this (Potiga/retigabine) even at a small does it helps lower the number of/intensity of my spikes. Thank you @Dr. Nagler for commenting on this and I totally understand why you wouldn't want to have an opinion on the subject.

 

[attheedgeofscience]

My ENT told me those looking for a cure never get better.

I forgot to mention that there was "once" an ENT who told me: "Aim to get through the day, today, do the same tomorrow, and the next 50 years will take care of themselves."

Needless to say, volume and "maskabililty" plays a role, and no two cases of tinnitus can be compared. But there probably is some element of truth to what your ENT told you. While ENTs are not very knowledegable about tinnitus, they are nonetheless on the frontlines of tinnitus from a practical perspective ie. they get all the patients - at least to begin with. So perhaps there are a few wise recommendations, every now and then...

 

[Dr. Nagler]

When I refer to "the promise of predictably safe pharmacological tinnitus relief," I am referring to a drug's having an established acceptable risk given the benefits to be derived. I guess I should have been more explicit. No drug is totally safe. Not even a single aspirin pill. Hell, a glass of water isn't totally safe - there have been reports of people "drowning" on a glass of water.

Dr. Stephen Nagler

 

[Grace]

Well lets hope that if trobalt helps
Enough, that those scientists in pa can recreate the drug with less side effects for T.. (Think they are doing that now) Not to mention autifony which the kv3 channels are supose to specifically target the channels related to T. If all fails it just in a way gets them closer to a cure and just keep filling in the missing peaces until its right and the noise goes off.

 

[jeannie]

im new to this site.. was just wanting to ask how long do you guys think it will be until a cure or at least a drug to help lower our tinnitus so we can at least have our lives somewhat normal again..?

 

[Lisa88]

The person who Retigabine has helped most on the treatment thread is more of the acute/sub acute variety. Some suppression has been found in other more chronic cases, especially towards spikes. Markku, Jazz and Steve will post updates on that thread soon, I believe.
AUT00063 now approaching Phase II, is going to target potassium channels specific to t, it is suggested. And will no doubt have a greater effect than Retigabine and fewer side effects, hopefully helping chronic cases too.
But yes, we don't know until some results come our way.

 

[Mpt]

I forgot to mention that there was "once" an ENT who told me: "Aim to get through the day, today, do the same tomorrow, and the next 50 years will take care of themselves."

...that must have made you feel great

 

[attheedgeofscience]

...that must have made you feel great

No, the most annoying "comment"/"helpful advice" I got in the very beginning, was actually from a neurologist. When I at the end of the examination asked for a simple 10-pack of Zolpidem sleep tablets, he of course prescribed them, but while doing so said: "You are are too young to be on this stuff; you should have a beer instead..."

Clearly this fool had absolutely no idea about the severity of (my) tinnitus which was a "concert" of 6-7 different sounds all competing with each other at night (for some reason my tinnitus - in the beginning - was very much affected by my head position).

Here are some other one-liners from my visits:

https://www.tinnitustalk.com/threads/acamprosate.4123/page-2#post-41079

 

[attheedgeofscience]

...that must have made you feel great

...I do think there is some logic to what that particular ENT told me, however. But of course, he was talking about a coping strategy and not about quality of life. Most people don't just want to "get by" a day at a time; they want their life back.

Personally, I think - or rather I have come to know - that ENTs are blamed for too much regarding tinnitus. ENTs are essentially surgeons - and tinnitus may well end up becoming defined as a neurological condition that falls within the domain of a neurologist. Not an ENT. Tinnitus lies at the very periphery of an ENT's competency. In my opinion.

My opinion goes for both the treatment and the diagnosis, too! So far a proper diagnosis is only possible at advanced clinics such as the brai2n clinic and the HIFU-clinic. And both of these clinics are neurology centres. Not ENT centres. Let us not forget that.

So basically it is the neurologists who are not doing their job. If anyone...

 

[cdog]

Well lets hope that if trobalt helps
If all fails it just in a way gets them closer to a cure and just keep filling in the missing peaces until its right and the noise goes off.

I think this is an important bit. Look at what @SoulStation said :

I have tried so many things as pharmaceutical treatments go and this is the only one that feels like it is really doing something.

I suspect many others who have tried Retigabine share this view. It seems that all previous drugs and treatments tried for tinnitus have not had this level of the perception of a 'real effect', of the perception that the drug is actually working/doing something, without doubt. So even if Retigabine is not the final silver bullet drug in the end, the existence of this 'real effect' is, for the first time, a big clue and a pointer to where further investigation and refinement must occur - namely, the gated potassium channels in the DCN and perhaps related regions. Therefore, whether or not Retigabine works to the satisfaction of everyone who uses it, it represents a sort of light at the end of the tunnel, and thus hope, whereas before there was total darkness.

 

[jeannie]

sooo true cdog!!!! hope they work real hard and find something soon!!!!

 

[jimH]

sooo true cdog!!!! hope they work real hard and find something soon!!!!

I hope so too, Jeannie. I've had this misery for more that 30 years. Sometimes it's been so bad that I didn't care if I even lived any more. Yet, the effect this forum has had on me is that now I find myself hoping for a cure more for younger people than myself. That's because I remember what a long and difficult road it's been to have work and raise a family of three children while suffering with this T condition. I've lived most of my life already. For me the pressure is off now . By that I mean that I'm retired and my children are grown and on their own. However, most of you still have a lot to do yet in your lives and it's truly you that am I hoping for the most. That there will be a solution (treatment/cure) so that you won't have to endure it throughout your lives in addition to all of life's stressors and responsibilities.

 

[rtwombly]

@jimH I've met so many older people with tinnitus since my own case set in that I keep saying to myself, "If I find something that works for me, I can share it with them, and this'll all be worth it." Thanks for your kind words to all us working dads and moms.

 

[jimH]

Thanks rtwombly. Even though I'm an old guy with T, I still ski and ride a Harley. So, at least I'm a cool old guy...

 

[billie48]

Jim, whether you know it or not, your story can be an inspiration to some struggling members. Having survived your tough T for so long, having raised a family despite incredible sufferings from T, and now enjoying your life (I wish I have a Harley, heehee), yours is a great story of survival with T. It takes incredible stamina and fortitude to do that and you did that with hardly any Internet support forums. That is admirable. Had I heard your story 5 years ago when I was in total darkness, your story would have served as a guiding light to me that severe T, sufferings and all, is survivable, heaven or hell. To me, anything was better than doing the unthinkable back then.

 

[jimH]

billie48,....Thanks for those very kind words.

 

[billie48]

Most welcome, Jim. You deserve all the accolades. You are like an old soldier among the T veterans and we are blessed to have you around to give the newbies some encouragement.

 

[Christian78]

Hello!

Do you have some book, some online lessons about habituation. I live in Sweden. We don't have psikologist for this. I read one book, but it is not easy. Hearing aids did not help but irritate, i rather have my open headphones. What do you advise for Hyperacusis?

MVH
Christian

 

[suncityguy]

I think this is an important bit. Look at what @SoulStation said :

I have tried so many things as pharmaceutical treatments go and this is the only one that feels like it is really doing something.

I suspect many others who have tried Retigabine share this view. It seems that all previous drugs and treatments tried for tinnitus have not had this level of the perception of a 'real effect', of the perception that the drug is actually working/doing something, without doubt. So even if Retigabine is not the final silver bullet drug in the end, the existence of this 'real effect' is, for the first time, a big clue and a pointer to where further investigation and refinement must occur - namely, the gated potassium channels in the DCN and perhaps related regions. Therefore, whether or not Retigabine works to the satisfaction of everyone who uses it, it represents a sort of light at the end of the tunnel, and thus hope, whereas before there was total darkness.

Well Said

 

[Cor]

Dear @Dr. Nagler , im unfortunately a few weeks behind in the discussion about the effectiveness of retigabine. In it, you stated that if retigabine would work, we would have heard it by now from epilepsy patients.

I would like to offer a counter argument.

I have been seeing a pain specialist with an interest in Tinnitus. In a way they have some similarities regarding the chronic effect and psychological elements. He has told me that when he tries out novel approaches to dealing with Tinnitus, he gets absolutely ridiculed by the ENT community. I mean, they're vicious. I have read some of the reactions to one of his papers, and wow, I didnt know doctors could be this mean. They're like teenage school girls! He was literally called a sharlatan simply because he brought up a specific treatment that he noticed seemed to help some tinnitus patients in his pain clinic.

So Im wondering if we havent been seeing any reports about the effect of other drugs or methods on tinnitus is because there is a tendency to "not rock the boat". Especially a boat full of ENTs, who have pretty much in general (with some exceptions) dug themselves into a specific treatment path for tinnitus and consider tinnitus to be fully in their domain. Even though I personally think tinnitus is a better match with neurologists.

 

[Dr. Nagler]

So Im wondering if we havent been seeing any reports about the effect of other drugs or methods on tinnitus is because there is a tendency to "not rock the boat". Especially a boat full of ENTs, who have pretty much in general (with some exceptions) dug themselves into a specific treatment path for tinnitus and consider tinnitus to be fully in their domain. Even though I personally think tinnitus is a better match with neurologists.

Retigabine is generally prescribed by neurologists. My thinking is that the first person who would hear about such a watershed event in the life of a tinnitus sufferer would be the prescribing physician.

As I see it, if 20% of the population is affected by tinnitus to some degree or another, then there ought to be at least one report somewhere of a person who was prescribed retigabine for epilepsy discovered that his or her tinnitus was gone as a delightful "side effect" of the retigabine.

As far as your assertion that ENTs consider tinnitus to be "fully in their domain," most ENTs I know pretty much dread seeing tinnitus patients.

stephen nagler

 

[Cor]

Possibly, but there seem to be so many factors that could affect that. Like you say, neurologists generally prescribe retigabine, and i have first hand knowledge of one that found interacting with ENTs about tinnitus a very painful and pretty much useless endeavour. Granted, 1 is a terrible sample, but I was surprised at the ferocity of the response.

It would also assume that people with epilepsy are just as likely to be affected by tinnitus as others. It seems like a likely assumption, but who knows. Maybe people with epilepsy, especially as severe that they'd need retigabine, tend to live different social lives that keep them in general away from situations that could cause hearing damage. I know that my niece who has epilepsy needs to always be aware of her situation in anything she does. Do loud noises bring on seizures? Maybe they've learned early on to avoid those situations that seem to be causing tinnitus in many people causing the numbers to not translate that easily.

But I see your point, and it's a valid assumption. I simply find it difficult to believe one could mentally affect their tinnitus volume in the ways people in the retigabine threads are describing. Some wishful thinking sure, but when my own tinnitus volume is low or high, there is absolutely no mistaking it. Mine fluctuates a lot, and although my mood is certainly a factor, when it's low or high, i can objectively tell.

 

[Dr. Nagler]

But I see your point, and it's a valid assumption. I simply find it difficult to believe one could mentally affect their tinnitus volume in the ways people in the retigabine threads are describing.

Not knowingly, one can't. Not purposely, one can't. I completely agree with you there.

But the placebo effect is not merely a "mental" effect. The placebo effect has a sound neurological basis. We are not talking here about something akin to wishful thinking.

stephen nagler

 

[PaulBe]

I still remember the old nurses who gave the Pethidine or Morph seekers a saline injection, and that was all we heard from them until the four hours was up and they were asking for their next "dose". No-one does it these days but it sure as hell worked on some. Unethical as all hell (apparently) but proof of concept with the placebo effect.