Retigabine (Trobalt, Potiga) — General Discussion

I live in the UK , when you say tinnitus treatment... what to do you mean by that... I have been advised to do CBT which imo is a waste of time but will try it anyway once i can actually get the appointment... other than that I have been twice to the hearing therapist about my T... both times all they did was talk and give me advice, advice that i was already very aware but that isn't doing anything for me... I kinda get it... not much they can't do... its not like im the one suffering with this everyday... It still sucks and I lost faith in the doctors now... It's like they cant do anything for me... no one can... Why should I continue this shell of a life

 

Unfortunately @Emanuel Lourenco by saying imo CBT is a waste of time, you have reinforced negative thinking that the treatment won't work. Therefore, if you are not careful you've failed before you've started treatment.

Michael

 

Well it does nothing for the loudness of the T so why would it help me? This is not something that affects me because of the negative thoughts I have for the T, I have negative thoughts about the T because it affects me so much, and it makes me feel unwell everyday. I just don't think any type of therapy will take away my greatest wish of having this gone... I don't even want things anymore or have ambitions I just want one singular thing that no one can give me...

 

I disagree with you @Emanuel Lourenco and believe that you do have a somewhat negative mindset. I suggest you read the post below and refer to it regularly.

Michael

Acquiring a positive mindset

A few people have contacted me and asked what do they need to do to be more positive, as they are finding it difficult even though they try not to think negatively when their tinnitus is intrusive. Others are wondering will they improve to the point where the tinnitus will remain low or go away completely and never be heard? Some are worried they might never habituate and this is causing some concern.

The habituation process can be complex and each person’s journey through it will be unique to them. Most people do habituate and are able to carry on and lead a fulfilling life doing everything that they want to. However, it seems some people find this hard to believe and I understand this having habituated to tinnitus twice. On both occasions it required patience, determination and the belief that I would improve even at those times when I felt that I was at my lowest ebb.

Tinnitus can affect our emotions significantly and one must try to remember that. Anything that we can do to bring calm and relaxation into our life will usually have a beneficial effect and make it less intrusive. The opposite is true the more stressed we become as the noise will appear to be louder and more noticeable. Those new to tinnitus sometimes find this particularly difficult and if hyperacusis is present it can add to the dilemma. The whole process can became overwhelming at times but my advice, is to take things slowly and not to push too hard as this will put additional pressure on yourself that you really don’t need it. Whenever difficult times arrive, try accentuating the positive things in your life and focusing on them as this will help maintain your resolve.

For a moment think of the brain as a computer and our thoughts are the software that helps to drive it to enable it to do certain tasks. If the software is not running smoothly and unfettered the computer will not operate correctly. Similarly, if our thoughts are constantly taken up with negative thinking this can eventually have a detrimental effect on our well-being. I am not suggesting never to feel negative about your tinnitus I am saying, try not to allow negativity to become all consuming. Again, this isn’t easy especially in the early stages of tinnitus and takes time to learn but don’t believe that it is unobtainable as this will instill negative thinking.

How many times have you come up against a problem that you have been unable to find a solution to? Given the chance to mull things over for a while or after a good night sleep can often be beneficial. By the next day as if by a miracle, you have discovered an answer or made the right decision about something of importance. I believe this happens because the mind is calm and less stressed. I have heard writers and people that work in the arts, say their best ideas and inspirations comes to them when they feel this way. It’s as if the mind energy is able to expand and reach outwards tapping into some unknown source in the universe. I prefer to be more realistic and see it as when we are calm and relaxed, we are able to think more clearly and positively. Life will usually become easier and less problematic which has to be a good thing.

Whatever type of tinnitus you have, by this I mean the level of intrusiveness. Being able to think positively will have a beneficial effect by making its perception lower and the habituation process easier. Bringing positivity into your life takes time and isn’t achieved overnight. To start this process of acquiring a more positive mindset, I suggest practicing deep relaxation and muscle exercises. When done regularly the benefits will soon be realized and you will surprise yourself at what you will be able to achieve. This form of therapy is often mentioned in tinnitus books to help people with the condition. Likewise Yoga and CBT Mindfulness classes can be helpful.

Deep relaxation and muscles exercises cost nothing to learn providing you can spare up to thirty minutes of your time: three, four or five days per week. Just go to Youtube where there are many relaxation videos to choose and download and some come with narration, so you’ll be guided through the exercises from beginning to end. Once you become proficient at it you will be able to relax at will any time of the day.

Michael

Progressive Muscle Relaxation For Management...

https://www.tinnitustalk.com/threads/positivity-and-tinnitus.12060/
https://www.tinnitustalk.com/threads/staying-positive-with-tinnitus.12069/
https://www.tinnitustalk.com/threads/is-positivity-important.23150/
https://www.tinnitustalk.com/threads/tinnitus-and-the-negative-mindset.23705/

 

The thing is this is not a problem to be solved... this is a problem that is deemed a success when people learn to live with with it and cope basically leading a crap life but you know... they think more positively so it seems that it doesn't suck as much... How many are there in the forum that even after years and decades are still taken down by T ...Believe me, there are days that I try... I want to not let this affect me, I want to try and focus my energy on something else, I want to because I miss feeling happy or at peace... But I can't I fail everyday because this is something relentless and forever permanent there is not one moment of rest from this.. except sleep which is also a lot harder to acquire because of this. There is no peace anymore there is no quiet and that brings me down, more down that I ever imagined I could get. There is no more will to live... I'm just trying to hold on as much as possible because we are not ready to deal with death ever, the thought frightens me and so does the thought of living with this condition for the rest of my life

 

I understand your plight @Emanuel Lourenco . I suggest you print my post above and others from my "started threads" and read them regularly. It is difficult but some things things in life don't come easy. Please read the post below, if you're not too tired about Marcus, a Member of this forum. He was full of negativity and look how he turned his life around.

From darkness into light.

Tinnitus is not an easy condition to live with when it is severe. So it always pleases me to hear when someone habituates and is able to put the passed behind them and look forwards to a brighter future. A forum member contacted me recently to express just that and has agreed for me to include some of his comments although his name has been changed. Anyone having difficulty habituating I hope they will find this post helpful.

Last year Marcus was in a distressed state and convinced he would never see light again at the end of the tunnel. He works as an electrician and while up a ladder one afternoon, suddenly heard a loud ringing coming from a fire alarm that was on a nearby wall. He didn’t pay it much attention and wasn’t concerned about his hearing as he believed it would soon stop. He continued working but this proved not to be a good idea as the alarm continued for another twenty minutes. When it finally stopped and there was complete silence he then noticed ringing in his ears. Over the following days and weeks it gradually became louder and more intrusive.

I remember his out pouring and condemning himself in this forum as if it were yesterday. He couldn’t believe he had done such a thing. Staying in that vicinity with no hearing protection and not coming down off that ladder had resulted in his whole life being turned upside down. With the benefit of hindsight one is often able to see mistakes that could have been easily avoided if they only knew. In his own words life as he once new it was completely over. Married with two young children he enjoyed regularly going out with the family but all that came to an abrupt end. I and other forum members tried to make Marcus look at the positive things in his life and not to give up hope but little of this was having any impact. The walls of negativity that he had built up to surround himself were just too great and it seemed no amount of good advice was able to get through.

His symptoms will be familiar to those that have suffered noise trauma to their auditory system. Intrusive tinnitus with hyperacusis, that can vary considerably especially in the early onset of the conditions. I understood his distress at not being able to enjoy listening to music even as a form of distraction from the noise. Everything sounded distorted to him as if it is coming out of a broken speaker and his ears would hurt when certain sounds were heard. His appointment at ENT was some time away which is often the case when tinnitus is not accompanied by dizziness, balance problems and impaired hearing or continuous pain in the ears.

Contrary to what some believe, the best treatment for tinnitus in the early stages and when there are no additional symptoms, as mentioned above is to leave it alone. The ears and auditory system are very delicate and often right themselves when left alone. Many people habituate to tinnitus within the first six months sometimes a little longer and the condition has been known to go away completely. Marcus had taken time of work, as he just wasn’t in a good place and couldn’t function properly. One good thing is that he was under the care of his GP and taking medication to help cope with his moods. Tinnitus can be such an emotional roller coaster in the early days so often no two days are the same. An antidepressant often helps a person from becoming too down so acts as a safety net when those low points arrive.

Marcus became a frequent visitor to this forum and I believe it helped him, although his outlook on recovery was quite bleak and negative. Perhaps knowing there were people around him in this virtual world of cyberspace, gave him the support and sanctuary that he needed to vent his frustrations which at times I believe were overwhelming. I hadn’t seen him for quite a while but got an acknowledgement from him recently by private messenger. I have omitted my comments.

It changes a lot over time doesn't it. Not just one’s perception of it but the tone itself.
For me it ranges from a jet engine noise to hum, I used to hear it all the time but now I only hear it in silence.

Just past the 1 year mark for me. Feeling much better now. It sure does take time.
How's things with you? I really appreciate the help and advice you have offered to me over this time, and the help from other people in the forum.

It's a terrible condition. I did go too see Guns n Roses last weekend at Slane castle. Used professional ear plugs, was a great show and no negative consequences apart from a crazy two day hangover lol

The fact the concert was outdoors made it possible, it still peeked at over 115db at times.
I still haven’t been seen at ent yet, did bother chasing up the appointment. No point really. I will take your advice and chase up ent and see if I can get an appointment. Just to do the tests.

Yes, I'm much much better now, I was in a very dark place. It was a terrible time. Things have improved, the distortion in music has gone and things sound normal again. I can even setup an eq system hear the different frequencies, when I first suffered this I couldn't hear bass, everything sounded flat, really was a bad time, I'm surprised I survived it to be honest.

I now have a new appreciation for sound and music. I just wish I understood this before. I still have slight balance issues but mostly I am happy my hearing has improved, It is very difficult too accept when it happens as I am sure you know.
I will always use hearing protection at loud events, concerts etc. The guns n roses concert felt fine with my pro plugs in and I noticed many others using plugs too. Good to see.

I’m back at work and able to spend time with my family. Thanks Michael for your advice (even at those times when I didn't believe it)
Marcus

 

Thank you I will take the time to read it, but the thing is... I was feeling better a few months after I had it and then it got worse, and it has been progressively worse for almost two years now... Pretty hard to keep hopes up when everyday seems harder than the one before...

 

I know tinnitus can be difficult to live with. If you've read my story? It took me 4 years to habituate the second time. Here is the link. https://www.tinnitustalk.com/threads/my-experience-with-tinnitus.12076/

Michael

 

I will give it more attention tomorrow, right now I try and get my so desired sleep. Thank you again for your time, I know you own me nothing, it is not your fault that I am going through this and I apologize if I seemed rude.

 

You're welcome Emanuel and you haven't been rude. You have always been well mannered and respectful towards me and you would soon know if you weren't. Take care and contact me anytime and if you want to give me a call, you can do that too.

All the best
Michael

 

Hi I don't know if anyone has posted this already. I'm new here. I have epilepsy so I kind of follow epilepsy drug stories. I'm also - well up for the next 2 weeks at least, then we shall have to see... studying Pharmacology.

They are looking at safer analogs of retigabine that will help epilepsy and tinnitus without producing the blue metabolites.

http://www.hearingreview.com/2015/06/new-drug-promises-relief-from-tinnitus-epilepsy/

This is 2 yrs old so who knows how far they have come on. I'm not on the drug and I hadn't had this ringing in my ears when I first read the story.

 

Does anyone here having trobalt? Or are there other options to try?

 

How many times do I have to write it... Keep away from it. It's serously dangerous. At least three people here (including me) have severe permanent visual damage. I know you are desperate but it's still not worth it.

 

I never experienced any problems. I had a full workup with an ophthalmologist before starting and every three months while on the medication including doing an OCT and dilated fundus photography every visit. No changes. I feel for people that did have problems, it is a serious medication with potentially serious side effects.

 

Hello Patrick. I was hoping that after all this time you would have improved. I am extremely sorry that you suffer all the side effects + tinnitus. Did you experience visual issues before rtg?

 

Hmm... Then I really want to habituate soon.

 

Thank you for caring I got severe visual snow syndrome (static, ghosting, double vision, glare and tons of floaters) after only three days on Trobalt (lowest dose ? 50mg 3/day).

 

We are three from TT that are desperately looking for treatment for our severe visual snow that we got from Trobalt. It's like Russian roulette using this drug.

 

In the end I haven't tried the drug, because I read your post. Unfortunately 3 days now I have developed ear pain which is a totally new world and I feel hopeless.

 

I used to have ear pain a lot. Nowadays got a masker. Works very well for me; really calms my ear and takes the focus of tinnitus a lot. After a year of struggling, this really gives me relief.

 

@Berik can't you share your experience with me and suggest me something. Just inbox me. Thnx for responding

 

I used trobalt and I did not get VS after 2,5 years, how come?

 

I used it for 2,5 years and I have no visual snow, no floaters (except those I had before and actually my retina color spot on left eye went ok)

 

I got no visual not after 2 years, I called GSK and asked them about visual snow and they said it is not a side effect of the medicine. I had retina spot color change that went ok now after 1,5 year on multivitamins and my eyes are 95% with glasses and other is 100% sight with glasses, glasses are 0.5 and 0.75 cylinder

 

I’m glad you haven’t experienced it. Not all side-effects affect everyone. But three people in so small group of people is a lot. One of my neuro doctors said he is convinced it’s Trobalt that messed up my brain and visual center. Talked with GSK and they didn’t deny it and said they were sorry and nothing they could do about it. Best to you @Christian78 ✌️

 

I read about it, there were 1440 patients using Trobalt, what defines the small group?

There is a link between Tinnitus and Visual snow as both are a type of epilepsy.

Visual Snow Syndrome and Its Relationship to...

In the end that is type of tinnitus Jeanmonod treats in Switzerland...

 

Dear forum,

It's been a while since i managed to obtain Trobalt despite the fact that the drug is out of the market and despite reading thouroughly the information and the possible risks. I wouldn't like to disclose how i obtained the medicine. What i would like to report is that i acted a bit hasty and proceeded to test the drug. I only took 1 tablet of 100mg and one more of 100mg the next day to see if i would get any effect. That was it. Only two pills. No other drugs or supplements that i could possibly use the same time. Just RTG. Sadly after 3 days i developed a quite severe case of visual snow. My case sounds similar to @PatrickG. What i experience now seems worse then my current tinnitus with which i ironically started to cope better. Under these circumstances i should re-evaluate my startegies over tinnitus and how i ended up balancing foolishly the online information of the forum. I should have just sticked to my doctor's instructions and stop mistrusting her due to my tendency to relate and get affected by the stories of different members in general. At this point i don't know what to do anymore, nor how to accept this new condition and surpass the guilt. In any case i felt obligated to report that i am the forth person of acquiring VS by Trobalt (and i suppose the stupidest one, since the "Trobalt-era" in the forum was already finished years ago with poor long-term beneficial results and reported, among others, visual side effects). I guess my desperation over tinnitus led me in tremendous miscalculation. Right now i am dealing with a new bout of tremendous anxiety and panick attacks. I guess i have to withdraw from the forum in general. I really don't know what is next, nor if i can survive. Merry xmas to all.
V.

Ps. I believe that i had a mild case of VS before, maybe before my tinnitus onset, but i couldn't notice. In any case this must have been a significant factor of developing a more severe case of this.

 

I'm very sorry to hear that.

Just so I'm understanding you correctly, you developed VS three days after your last dose?

 

Excactly. It's pretty peculiar.

 

That is strange, I wonder if it's some sort of paradoxical reaction after discontuing the medication. But you weren't on it for long nor were you taking a high dosage.

I'm still on a low dosage, and I know I really need to taper off completely. I'm crossing my fingers and hoping it goes smoothly.


I hope the VS improves for you. I wouldn't assume it's permanent just yet.