Retigabine (Trobalt, Potiga) — General Discussion

Trouble is Dr Nagler - what do you do if your own doctor refuses to discuss it with you?
Then fire your doctor ... and find one who will. If your doctor refuses to discuss something with you of such great importance, then what the hell good is he (or she)?

From your postings I can readily tell that tinnitus significantly affects your health and well-being. Isn't that what doctors are supposed to do - address those factors that significantly affect your health and well-being?
 
Then fire your doctor ... and find one who will. If your doctor refuses to discuss something with you of such great importance, then what the hell good is he (or she)?

From your postings I can readily tell that tinnitus significantly affects your health and well-being. Isn't that what doctors are supposed to do - address those factors that significantly affect your health and well-being?
They just ignore me..........I have changed three doctors now and am on the fourth.......she told me she wanted me to go to the T clinic and that she wanted to call as I would get a faster appointment if she called. She promised to phone or email me with the appointment date. Suffice to say that after a month I asked her what I can do to get an appointment. Hah! In the end I made the appointment my self and have not heard a word from this current doctor. Useless!! and I cant find another one..........
 
They just ignore me..........I have changed three doctors now and am on the fourth.......
I really hate to hear that. It is truly a privilege to practice medicine. And it is just awful when a doctor does not respect his or her patient. That's what this is, you know. It's a matter of respect.

Friends, my point it that whenever you are facing a major healthcare decision (and make no mistake about it, dosing retigabine is a major healthcare decision), it is always a good idea to discuss it with your own physician.
 
This way you are not going up 50 mg every 2 days but 150 mg every 2 days ... the guidelines say.. increase by 150 mg per week ... that means you can add 50mg per every 2 days to your regime.

I`m sure others will say this is too slow but i`m just trying to give the clearest message possible here. And I already said the same thing in a few posts before so it just shows have easily things are misunderstood and misinterpreted and I also think you have n`t read the paper that comes with the box? :) ;) which should be the first thing you do when you are using medicines.

I started with 100 x 3 ... the first time I took 150 I was high, smiling and whistling with a grin on my face for over an hour. I can imagine if you up the doses this fast it`s going to be a nice merry go round for you. You really have to let the body adjust to these new compounds in the brain.

jumping from 200 3TID to 400 3tid is just not done imo. you`ll go from half the maximum dose straight to the maximum dose ... that is asking for problems I feel ...
Hi Nills,

This is the taper-up dosing schedule

Day dose 1 dose 2 dose 3 total dose
1 150 150 150 450
2 150 150 150 450
3 200 200 200 600
4 200 200 200 600
5 250 250 250 750
6 250 250 250 750
7 300 300 300 900
8 300 300 300 900
9 350 350 350 1050
10 350 350 350 1050
11 400 400 400 1200
12 400 400 400 1200
13 400 400 400 1200
14 400 400 400 1200

So i plan to go up 50mg per dose every 3rd day. So yes, up 150mg every 3rd day. So yes, more than 150mg per week. Hmmmm....

Problem is the box pamphlet is in Spanish !
I'll find the insert online in English.
http://www.ema.europa.eu/docs/en_GB...duct_Information/human/001245/WC500104835.pdf

As u said... 150mg up per week. So i'll have to see what is best. Tx for your input.
 
I really hate to hear that. It is truly a privilege to practice medicine. And it is just awful when a doctor does not respect his or her patient. That's what this is, you know. It's a matter of respect.

Friends, my point it that whenever you are facing a major healthcare decision (and make no mistake about it, dosing retigabine is a major healthcare decision), it is always a good idea to discuss it with your own physician.

My doctor wouldn't give me anything either...He doesn't prescribe anyone anything...My neighbours even said he wouldn't prescribe their child antibiotics when he was terribly ill and told them to go home it'll subside. He basically sends me to other people so they prescribe me drugs, so he won't have to. He's already told me the reason they won't give me trobalt is because they don't to accept responsibility if something goes wrong...But they gave me ototoixc meds which gave me tinnitus in my other ear.
 
They just ignore me..........I have changed three doctors now and am on the fourth.......she told me she wanted me to go to the T clinic and that she wanted to call as I would get a faster appointment if she called. She promised to phone or email me with the appointment date. Suffice to say that after a month I asked her what I can do to get an appointment. Hah! In the end I made the appointment my self and have not heard a word from this current doctor. Useless!! and I cant find another one..........

Weren't they racist to you in France?
 
Isn't that what doctors are supposed to do - address those factors that significantly affect your health and well-being?

Can they really address such a thing as tinnitus? The phrases:

"Deal with it"
"Let it whistle, it is no big deal"
"Don't worry, you will be fine, you'll get used to it"
"Trust me and don't go to any other doctor, they will do nothing, stop searching for a solution"
"Be patient, it will pass"

accompanied by the fair amount of a doctor's normal payment (the usual charge), do these address your problem?

They should not be taking any money admitting that they can't do sh!t for you (pardon my language).
 
Can they really address such a thing as tinnitus? The phrases:
"Deal with it"
"Let it whistle, it is no big deal"
"Don't worry, you will be fine, you'll get used to it"
"Trust me and don't go to any other doctor, they will do nothing, stop searching for a solution"
"Be patient, it will pass"
accompanied by the fair amount of a doctor's normal payment (the usual charge), do these address your problem?
Well, they certainly didn't address my problem when I heard those words.

Let me ask you this, if I may. Can you put precisely what it is that what you consider to be your problem into words? I ask you because back in 1994 if you had asked me the same question, I would have gotten it wrong.
 
Can they really address such a thing as tinnitus? The phrases:

"Deal with it"
"Let it whistle, it is no big deal"
"Don't worry, you will be fine, you'll get used to it"
"Trust me and don't go to any other doctor, they will do nothing, stop searching for a solution"
"Be patient, it will pass"

accompanied by the fair amount of a doctor's normal payment (the usual charge), do these address your problem?

They should not be taking any money admitting that they can't do sh!t for you (pardon my language).
Excellent! A campaign should be started making it illegal for ENT's or doctors to take any payment for offering any of the above "usual responses" on t. if they can't do anything to help , then how can they charge ppl? What if you took your car to a mechanic and the mechanic says "there is nothing we can do" but still charges you the cost of a service? This is effectively what docs and ent's are doing. It's criminal and they don't even bat an eyelid. Totally normal for them.
 
I am not sure I follow you.
Well you just said [in part]:

"accompanied by the fair amount of a doctor's normal payment (the usual charge), do these address your problem?"


So I was asking if you can say precisely what "your problem" is. Try it.
 
Well you just said [in part]:

"accompanied by the fair amount of a doctor's normal payment (the usual charge), do these address your problem?"


So I was asking if you can say precisely what "your problem" is. Try it.

It is easy actually.

My problem is that I have distorted sound especially in high frequencies, accompanied by a terrible high frequency whistle in the right ear which is totally unnatural and extremely bothersome. I have an MRI of AC that shows signs of microvascular compression by AICA in the entrance of acoustic meatus. One doctor said this is related to my sound. Other said this is a totally normal finding in the MRI that half of the population do have and is not troublesome. Other say it is due to acoustic trauma I possibly had, although there where others there when it supposedly happened and do not complain about their ears.

I want to get rid of the sound I have in my ear and have normal hearing again. Is there a way?

Before you tell me that they charge for the time it takes for them ti hear me out, you should know that they also charge me the second time I go there to say there is no change in my condition. I do respect the years a doctor has spend studying to get his/her degree, but they also should respect the patient and admit the fact that they can do nothing by prescribing useless stuff in order to justify the visit and their (pharmaceutical company's) interests.
 
I want to get rid of the sound I have in my ear and have normal hearing again.
So setting aside any hearing loss for a moment, in a nutshell I think you are saying that your problem is tinnitus. But there are many people who have tinnitus - even loud tinnitus - who are doing quite well. They have no need to see a doctor for it. They have no need for support boards. So I would say that your problem is not that you have tinnitus, but rather your problem is that you have tinnitus and in some way or another it makes you feel bad. I mean, if your tinnitus didn't make you feel bad, you would still have tinnitus - but you really wouldn't have a problem. So you go to the doctor's office because you have tinnitus and it makes you feel bad - and after a whole bunch of tests and a whole bunch of money and a whole bunch of non-answers, you leave the doctor's office still having tinnitus, but feeling even worse! No wonder you resent the doctor. Who can blame you?

Well, this is a retigabine thread. And the hope is that retigabine (or some similar agent) will either eliminate or lastingly diminish the tinnitus signal. If that happens, you won't have a problem ... because you won't have enough tinnitus to feel bad about! And that will be wonderful.

Sadly, the fact of the matter is that here in 2015 we do not have an agent that will either eliminate or lastingly diminish the tinnitus signal. So my particular interest is a very pragmatic one. How can you change tinnitus that makes you feel bad into tinnitus that does not make you feel bad? So that even though you still might have tinnitus, you will no longer have a problem. But since that particular avenue has nothing to do with retigabine, discussing it further does not belong in this thread.
 
:cry:
Then fire your doctor ... and find one who will. If your doctor refuses to discuss something with you of such great importance, then what the hell good is he (or she)?

From your postings I can readily tell that tinnitus significantly affects your health and well-being. Isn't that what doctors are supposed to do - address those factors that significantly affect your health and well-being?

This sound so nice, fire your doctor. In Sweden there is no such wonderful thing.

I was in that severe pains and burning sensation on my skin... they done 40 blood tests from autoimmune, rheumatism, ordianry test, sexualy transmited.... mineral etc. and then she sent to neurologist to check me up and 2 months later i got answer that trobalt is not supposed to be given to me because it is not for tinnitus, and second he does not have time to check me, i am not serious case and if after 2 more month (if i am not dead) she shous send again request, but anyway he cant do nothing....
 
So setting aside any hearing loss for a moment, in a nutshell I think you are saying that your problem is tinnitus. But there are many people who have tinnitus - even loud tinnitus - who are doing quite well. They have no need to see a doctor for it. They have no need for support boards. So I would say that your problem is not that you have tinnitus, but rather your problem is that you have tinnitus and in some way or another it makes you feel bad. I mean, if your tinnitus didn't make you feel bad, you would still have tinnitus - but you really wouldn't have a problem. But there are many people who have tinnitus - even loud tinnitus - who are doing quite well. They have no need to see a doctor for it. They have no need for support boards. So I would say that your problem is not that you have tinnitus, but rather your problem is that you have tinnitus and in some way or another it makes you feel bad. I mean, if your tinnitus didn't make you feel bad, you would still have tinnitus - but you really wouldn't have a problem. So you go to the doctor's office because you have tinnitus and it makes you feel bad - and after a whole bunch of tests and a whole bunch of money and a whole bunch of non-answers, you leave the doctor's office still having tinnitus, but feeling even worse! No wonder you resent the doctor. Who can blame you?
No doctor, actually the distorted hearing is very much disturbing, I cannot watch a movie, listen to music (much less enjoy it) go to the cinema, a basketball game, a party, pretty much nothing that a usual person does, or I as a personality did. All these I used to do without problems. Now, I even get the chills from just touching a plastic bag because of the distorted sound it makes. I do sleep very well in spite tinnitus, got used to it, I can talk with others just fine, have my sense of humor and my laughs just fine and I do get over the psychological part quite well without any pills whatsoever. I only take vitamins in order to help my organism repair whatever it can.

I agree there may be people with tinnitus that just don't give a damn, and there ma be others that committed suicide. I am not those people. I am my own personality. This does not make me an obsessed person. It does not change my perception of things or other people. My interaction with them does. And I had quit a lot interaction with them last months. I did have the same notion for them before, it is a fact I won't deny. They lack humanity, compassion. Sometimes when science can't do jack, another touch is required. A good doctor should acknowledge that. Showing compassion with a 50€ in the pocket is a lot easier though isn't it? I got better free advice from you here in this forum, why not stick around?

I am just a guy looking for a hope that I will be able to enjoy life as I used to do. This is why most people here join the forum. To get that hope so dearly needed. The other day I was on a mountain breathing the clear air and listening to pure sounds of nature, which most people adore. Oh, sorry, there was a strange shity buzzing in my head destroying the feeling!

What a difficult, strange person I am...
 
Just want to say: I am glad that there now is a disclaimer at the top of this thread, that retigabine should not be taken without medical supervision.

It appears some of you are coming up with your own dosages, creating your own mix of pharmaceuticals, and buying them online or from third parties (so, in other words, there could be anything in those capsules). I recognize people are desperate, and I appreciate that. I was desperate, too. Still am, some days. And I respect the right for everyone to follow their own treatment paths. I am not judging anyone.

But for those who may be new to tinnitus, I would say: be aware there are serious risks going down the Trobalt path. Also, if you think your T is bad now? You could end up making it worse. I am surprised that some people here who refuse to take "ototoxic" meds -- where less than .05 percent of users later have reported tinnitus -- are willing to take off-label anti-seizure drugs where far many more folks have developed serious side effects.

Having said that: I am as interested in retigabine as anyone else. But I don't believe its a DIY project. I intend to wait for more research and a doctor willing to work with me. Just my opinion.
 
No doctor, actually the distorted hearing is very much disturbing ...
I wish I had something to offer you there in the way of a suggestion. But the reason I said "any hearing loss aside" (by which I should have included distorted hearing) is that this is a tinnitus board, and while I am very sympathetic to your situation, I personally do not know enough about distorted hearing to be in a position to responsibly offer you any advice. Nor to the best of my knowledge does anyone else on this board, although - again - we are all sympathetic.

What a difficult, strange person I am...
You aren't difficult or strange at all. You are ill. And I hope you can eventually find your way into the hands of a hearing healthcare professional who can provide insight and assistance.
 
.........But I don't believe its a DIY project. I intend to wait for more research and a doctor willing to work with me. Just my opinion.

Fortunately for us and for the sake of diy "research" the only reason retigabine got mentioned was because certain individuals weighed up the risk of taking this drug and tried it. The alternative is to wait for many years and yet more orthodox research before a drug is finally approved and released for us all to safely try.

At least for those who have tried it and silenced or reduced their noise, albeit temporarily, know it can be.

Due to some positive feedback of this drug it has been brought to the attention of the tinnitus research community.

There are no other drugs or substances out there at the moment that do anything for tinnitus.

What is any doctor going to offer? Counselling and TRT, white noise generators, MRI scan....
 
What is any doctor going to offer?
What is your doctor going to offer?

Well let's see. Your doctor will know your own medical history as well as the potential interactions retigabine might have with any of the other drugs you are taking. Plus, if things start to go badly for you while you are on the drug because of an adverse reaction - like say you develop loss of vision or have serious symptoms of dementia or get light-headed and fracture your skull when you fall down on the cement or develop profound bradycardia due to the syngergistic effect between RTG and the cardiac glycoside you just happen to be on - your doctor is the very one you are going to turn to get you out of the mess you have gotten yourself into. And if things really turn to shit, your doctor is the one you are going to blame for not being able to help. So don't you think he or she deserves the benefit of a heads-up before the fact. Indeed, don't you think you deserve the benefit of your doctor's having a head's up before the fact?

I am a fully licensed physician. I can write a prescription for any legal drug known to man on or off label for myself to take any time I want. And I never ever do it under any circumstances whatsoever without my own doctors' knowledge and approval in advance.
 
Having said that: I am as interested in retigabine as anyone else. But I don't believe its a DIY project. I intend to wait for more research and a doctor willing to work with me. Just my opinion.

I do feel replying to your last statement that if you show interest and knowledge and responsibility about the subject to your doctor he will help you straight away. it is not like you have to go doctor hunting for this. It took me reading up on the subject, getting professional advice from 1 neurologist and 1 visit to a doctor I never met before to get my prescription. I did a bloodtest, QT interval check and I explained him the major problems that come with this drug while he was still trying to find google on the web. So he looked at me and said ... ok.

Us on the forum is the only research you can expect for this medicin. It will never be researched, So in the end it is the DIY sufferers that are making history for millions.

Oh yes: I suggest everyone read Tutuffs report in the experience forum.
 
I do feel replying to your last statement that if you show interest and knowledge and responsibility about the subject to your doctor he will help you straight away. it is not like you have to go doctor hunting for this. It took me reading up on the subject, getting professional advice from 1 neurologist and 1 visit to a doctor I never met before to get my prescription. I did a bloodtest, QT interval check and I explained him the major problems that come with this drug while he was still trying to find google on the web. So he looked at me and said ... ok.

Us on the forum is the only research you can expect for this medicin. It will never be researched, So in the end it is the DIY sufferers that are making history for millions.

Oh yes: I suggest everyone read Tutuffs report in the experience forum.

Nils this may be a daft suggestion but how about one simple piece typed out here on TT - simple and short - saying exactly what you explained so that any one of us can say that to the doctor as you did.
In other words one pre prepared speech or could be printed off to take with.
What do you think?
 
I would not bother with this drug. You can maybe get some relief, get super high for a few months and then you are f--ked again. What's the point? Sit around baked and happy for bit? I have read every post here since the start, there isn't much, if anything to suggest that there is any permanant effect. Why the hell would your doc give you a dangerous drug that is totally unproven to help T? Put yourself in his position.
 
I would not bother with this drug. You can maybe get some relief, get super high for a few months and then you are f--ked again. What's the point? Sit around baked and happy for bit? I have read every post here since the start, there isn't much, if anything to suggest that there is any permanant effect. Why the hell would your doc give you a dangerous drug that is totally unproven to help T? Put yourself in his position.
I kind of agree with you ... although i`m trying it myself ... it is a big risk in certain situations and there is no prove yet of it helping in any way. (I still havn`t had much or any reduction) The being baked part is a blessing because sometimes we just need a little push to move forward and put our attention on something else. And yes, doctors will have to take responsibility for whatever happens to you. The drug is on a warning list to only hand out as a last resort ... it is a last resort for a lot of us ... the reason it is under warning is because of the eye damage in can cause ... but this happens after long term use only. So ... what to do ...
 
I would not bother with this drug. You can maybe get some relief, get super high for a few months and then you are f--ked again. What's the point? Sit around baked and happy for bit? I have read every post here since the start, there isn't much, if anything to suggest that there is any permanant effect. Why the hell would your doc give you a dangerous drug that is totally unproven to help T? Put yourself in his position.

I kind of agree with you ... although i`m trying it myself ... it is a big risk in certain situations and there is no prove yet of it helping in any way. (I still havn`t had much or any reduction) The being baked part is a blessing because sometimes we just need a little push to move forward and put our attention on something else. And yes, doctors will have to take responsibility for whatever happens to you. The drug is on a warning list to only hand out as a last resort ... it is a last resort for a lot of us ... the reason it is under warning is because of the eye damage in can cause ... but this happens after long term use only. So ... what to do ...

There are many people who have tried it on this forum who dont seem to have had any bad effects from this drug. @Danny Boy and @Juan Carlos and @locoyeti spring to mind immediately. @Christian78 has been on it for a while but not sure whether it has been good bad or indifferent for him. Others have taken it and seem to have gotten on ok by looking at the users list. It is a dangerous drug but we are in a terrible situation with no help anywhere. Even the AM 101 injections seem to have been less effective than this drug and Autifony hasn't given us anything yet. So people kill themselves with this ailment as they can find no relief....for those with mild T it is not necessary but for those with severe T then they have to have some sort of relief dont they. However I would add that i am aware that TRT does work for many people so they can live again happy productive lives. A friend of mine is doing TRT and he is now very well indeed with the use of the White Noise Generators and TRT counselling and CBT alongside. So I guess there is an alternative. As well when people are happier and less stressed by this then it does seem to go down too...........I dont know what is the answer but all I know is that I need a solution quickly if I am to survive at all............
 
There are many people who have tried it on this forum who dont seem to have had any bad effects from this drug. @Danny Boy and @Juan Carlos and @locoyeti spring to mind immediately. @Christian78 has been on it for a while but not sure whether it has been good bad or indifferent for him. Others have taken it and seem to have gotten on ok by looking at the users list. It is a dangerous drug but we are in a terrible situation with no help anywhere. Even the AM 101 injections seem to have been less effective than this drug and Autifony hasn't given us anything yet. So people kill themselves with this ailment as they can find no relief....for those with mild T it is not necessary but for those with severe T then they have to have some sort of relief dont they. However I would add that i am aware that TRT does work for many people so they can live again happy productive lives. A friend of mine is doing TRT and he is now very well indeed with the use of the White Noise Generators and TRT counselling and CBT alongside. So I guess there is an alternative. As well when people are happier and less stressed by this then it does seem to go down too...........I dont know what is the answer but all I know is that I need a solution quickly if I am to survive at all............
I`m with you Amandine ... I feel what you feel, the search for relief is like a catch 22 at the moment. We keep coming back to the point nothing really works. Happiness part is very important, but also catch 22 .. T ---->less happy ---->more T awareness ... but what I feel with RTG is that when you get that opening of those Kv gates, the serotonin flows better and you feel better overall and are less disturbed by T ... Happiness, serotonin, Tinnitus and the Kv gates have direct meaning for each other. I once was sitting on a hill and the wind and rustling of the trees was the perfect masking for my T in that moment ... the happiness that emerged from inside made tears flow down my cheeks ... it is all connected and if you solve one part of the puzzle the others will follow. just like a flame, air and a burnable mass are needed to have fire ... take away one, and the whole thing collapses.

I remember Christian claiming RTG gave him a lot of neurologic trouble, I don`t know if it is solved ...

But all these differences also have to do how fast people or tapering up and down ... if you jump too much in to little time your brain will react strongly ... I for myself don`t notice much side effects except the drunken part when I started and up my dose.

I would not use a drug with too serious side effects for temporary relief - I didn`t feel anyone was either saying side effects of RTG are too much, and also some claimed to have a lasting kin of benefit (however small but noticable) ... I think only people that took the drug can say anything about it cause words get interpreted in many ways ...

--------

sulpride seems far worse and is used for scitzophrenia and psychosis

Side effects Sulpride
  • QTc interval prolongation which can lead to potentially fatal arrhythmias.
  • Cholestatic jaundice.
  • Elevated liver enzymes.
  • Primary biliary cirrhosis.
  • Allergic reactions.
  • Photosensitivity — sensitivity to light.
  • Skin rashes.
  • Depression.
 
Happiness, serotonin, Tinnitus and the Kv gates have direct meaning for each other. I once was sitting on a hill and the wind and rustling of the trees was the perfect masking for my T in that moment ... the happiness that emerged from inside made tears flow down my cheeks ... it is all connected and if you solve one part of the puzzle the others will follow. just like a flame, air and a burnable mass are needed to have fire ... take away one, and the whole thing collapses.
Maybe this is how the Chi Quong thing works - re the newspaper article.............. http://www.irishtimes.com/news/health/my-life-was-a-war-against-noise-1.517024

I mean otherwise how did this guy get rid of his T after suffering from T and H for 10 years and then he seriously practices this ancient art of rebalancing energy and his T and H start to face and then go completely - cured.............plus on this forum there are others who have said they practice this and it has helped them enormously. Just seems to make sense that the mind is reflecting and causing a physical ailment............which we hear as T and as we know, great (and I mean real stress) definitely causes the T to go up. Not saying that it is our fault and we are to blame for being in this position etc...........not at all............but just seems that many many people seem to get T when they have also been in an extreme state of distress for some reason or other........not all of course.......some maybe just due to really really loud noise trauma like standing next to speakers at a gig for example or beng blown up or some accident that caused a severe blow to the head.............but many find that this ailment just came on for no real reason that they can think of and they usually have been through a period of great distress and ongoing unhappiness long time.....just a thought..........but was wondering how this ancient art balances the energy so that he got rid of his T and H........anyone here practised Chi Quong or however it is spelt.........there is a thread on this on this forum somewhere about this practice..........
 
This is totally off topic so I am not going to post anything else on it but it was just in response to what @Nils was saying in his post.

On here it discusses getting rid of Tinnitus through practising the art of Chi Quong...........and money back if it doesnt work too.......

http://www.smilefromtheheart.ie/shaolin-wahnam-ireland_1.html

This is in Ireland but they may be able to refer to reputable places elsewhere..........won't have side effects like Troabalt. Has anyone tried this and it was a waste of time and has anyone tried it and with success? Can be created as a new thread maybe? so as not to clog up this one........sorry guys and back to trobalt discussion..............(by the way where do you find the smiley faces on here to add?) thanks..........
 

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