Retigabine (Trobalt, Potiga) — General Discussion

[nills]

No shit. An acquintance of mine got tinnitus from blowing his nose too hard. What a shit way to get T lol.

Now you mention this I remember a few times blowing my nose and this cracking and high tone sound and pain n my ears ... for all I know this could have been my onset reason too ... cause My T just appeared in the middle of the night one day out of the blue.

 

[Silvio Sabo]

Now you mention this I remember a few times blowing my nose and this cracking and high tone sound and pain n my ears ... for all I know this could have been my onset reason too ... cause My T just appeared in the middle of the night one day out of the blue.

Mine appeared after sitting at home installing stuff on my newly purchased laptop. However I had been out clubbing and so on about once a month for a few years (between ages 18-22, you know being young and stupid) so it probably did something. But I have no measurable hearing loss.

 

[Nucleo]

Mine appeared after sitting at home installing stuff on my newly purchased laptop. However I had been out clubbing and so on about once a month for a few years (between ages 18-22, you know being young and stupid) so it probably did something. But I have no measurable hearing loss.

Did you also get a high frequency audiogram? It takes quite a beating to the inner ears to start seeing changes in the 0-8 khz audiogram.

 

[Silvio Sabo]

Did you also get a high frequency audiogram? It takes quite a beating to the inner ears to start seeing changes in the 0-8 khz audiogram.

Well, no. I have however tried several sound generators on my computer and I am able to hear sounds of up to 20 000 hz. But it's not by any means comparable to an audiogram.

I do suspect that I indeed have hearing loss in the high frequency range. But it's not anything that I have been able to verify.

They don't do tests higher then 8 000 hz anywhere near where I live. In fact, I haven't even heard of any clinics in the whole country (Sweden) that do and I have asked around because I'd like to get one.

 

[SoulStation]

Did you also get a high frequency audiogram? It takes quite a beating to the inner ears to start seeing changes in the 0-8 khz audiogram.

Tinnitus with Normal Hearing Sensitivity: Extended High-Frequency Audiometry and Auditory-Nerve Brain-Stem-Evoked Responses
G. Barnea1†, J. Attias1, S. Gold1 and A. Shahar1
1
†Correspondence: G. Barnea, Institute for Noise Hazards Research IDF Chaim Sheba Medical Center Building 87, Ramat Gan, 52621, Israel
International Journal of Audiology
Vol. 29: Issue. 1: Pages. 36-45
(Volume publication date: 1990)
DOI: 10.3109/00206099009081644
PreviousNext
Extended high-frequency (HF) audiometry and auditory-nerve brain-stem-evoked responses (ABR) were carried out on two groups of subjects with normal hearing sensitivity. The experimental group comprised 17 subjects with tinnitus, while the control group consisted of age-and sex-matched subjects, not suffering from tinnitus. The aim of the study was to determine whether extended HF audiometry or ABR might reveal significant differences between these two groups of subjects with normal hearing sensitivity. In addition, the characteristics of tinnitus in subjects with normal audiograms were discussed. The results of extended HF audiometry showed no significant differences between the subjects with and without tinnitus. The ABR parameters considered were also within normal limits bilaterally. Based on the methods employed in this study, tinnitus in normal listeners does not appear to reflect appreciable damage in the cochlea or in the brain-stem auditory pathways. The authors present some suggestions for future research.

Key Words: Tinnitus, – Extended high-frequency audiometry, – Auditory-nerve brain-stem-evoked responses, – Normal hearing sensitivy, – Symptom profileprofile


Interesting ah?

 

[Silvio Sabo]

Tinnitus with Normal Hearing Sensitivity: Extended High-Frequency Audiometry and Auditory-Nerve Brain-Stem-Evoked Responses
G. Barnea1†, J. Attias1, S. Gold1 and A. Shahar1
1
†Correspondence: G. Barnea, Institute for Noise Hazards Research IDF Chaim Sheba Medical Center Building 87, Ramat Gan, 52621, Israel
International Journal of Audiology
Vol. 29: Issue. 1: Pages. 36-45
(Volume publication date: 1990)
DOI: 10.3109/00206099009081644
PreviousNext
Extended high-frequency (HF) audiometry and auditory-nerve brain-stem-evoked responses (ABR) were carried out on two groups of subjects with normal hearing sensitivity. The experimental group comprised 17 subjects with tinnitus, while the control group consisted of age-and sex-matched subjects, not suffering from tinnitus. The aim of the study was to determine whether extended HF audiometry or ABR might reveal significant differences between these two groups of subjects with normal hearing sensitivity. In addition, the characteristics of tinnitus in subjects with normal audiograms were discussed. The results of extended HF audiometry showed no significant differences between the subjects with and without tinnitus. The ABR parameters considered were also within normal limits bilaterally. Based on the methods employed in this study, tinnitus in normal listeners does not appear to reflect appreciable damage in the cochlea or in the brain-stem auditory pathways. The authors present some suggestions for future research.

Key Words: Tinnitus, – Extended high-frequency audiometry, – Auditory-nerve brain-stem-evoked responses, – Normal hearing sensitivy, – Symptom profileprofile


Interesting ah?

Yes, I always had suspected that my brain was all messed up so this just proves it

 

[Nucleo]

@SoulStation

The relationship between distortion product otoacoustic emissions and extended high-frequency audiometry in tinnitus patients. Part 1: Normally hearing patients with unilateral tinnitus
Medical Science Monitor
Volume 18, Issue 12, 2012, Pages CR765-CR770

Background: The aim of this study was to evaluate distortion product otoacoustic emissions (DPOAEs) and extended high-frequency (EHF) thresholds in a control group and in patients with normal hearing sensitivity in the conventional frequency range and reporting unilateral tinnitus. Material/Methods: Seventy patients were enrolled in the study: 47 patients with tinnitus in the left ear (Group 1) and 23 patients with tinnitus in the right ear (Group 2). The control group included 60 otologically normal subjects with no history of pathological tinnitus. Pure-tone thresholds were measured at all standard frequencies from 0.25 to 8 kHz, and at 10, 12.5, 14, and 16 kHz. The DPOAEs were measured in the frequency range from approximately 0.5 to 9 kHz using the primary tones presented at 65/55 dB SPL. Results: The left ears of patients in Group 1 had higher median hearing thresholds than those in the control subjects at all 4 EHFs, and lower mean DPOAE levels than those in the controls for almost all primary frequencies, but significantly lower only in the 2-kHz region. Median hearing thresholds in the right ears of patients in Group 2 were higher than those in the right ears of the control subjects in the EHF range at 12.5, 14, and 16 kHz. The mean DPOAE levels in the right ears were lower in patients from Group 2 than those in the controls for the majority of primary frequencies, but only reached statistical significance in the 8-kHz region. Conclusions: Hearing thresholds in tinnitus ears with normal hearing sensitivity in the conventional range were higher in the EHF region than those in non-tinnitus control subjects, implying that cochlear damage in the basal region may result in the perception of tinnitus. In general, DPOAE levels in tinnitus ears were lower than those in ears of non-tinnitus subjects, suggesting that subclinical cochlear impairment in limited areas, which can be revealed by DPOAEs but not by conventional audiometry, may exist in tinnitus ears. For patients with tinnitus, DPOAE measures combined with behavioral EHF hearing thresholds may provide additional clinical information about the status of the peripheral hearing. © Med Sci Monit, 2012.
​

Also interesting.

 

[amandine]

I would just like to add something small to this discussion re Trobalt as this is being discussed in this thread too.
Saw a bumpkin of an ORL doctor the other day - Dr Dauman of Pellegrin Hospital in Bordeaux. He can be googled and he has attended lots of T conferences. He is apparently quite well known in France for T and runs a specialist clinic for it and is supposed to be a leading expert on T in France - well according to him he is THE top expert on T in France. However I found him to be absolutely useless. Why? Because he spent most of the consultation discussing English / French history and was very proud of his mastery of the English language which he achieved through reading historian Simon Schama books. Why I needed to know any of this after a 210km trip each way I have no idea! He then told me that I should have a fan or water fall sound playing in the room. That was it!
However when I was finally able to get a question in re T, I asked him about Trobalt. He was not surprised and seems to be well aware of the use of Trobalt for alleviation of Tinnitus. All he said to me was ''Yes but is it FDA approved?'' and then he disappeared muttering to himself about how much of HIS time I had taken up!!!
I have added this to the thread because it seems that the knowledge of the use of Trobalt for T is very well known in certain relevant sectors of the medical community even though it is not officially approved (yet?). So we know that Trobalt works -- but we don't know if it is a permanent solution or temporary and we don't know why some people seem to get side effects and others not and we don't know if those who don't seem to get side effects now will not get side effects afterwards and we also don't know whether age when taking trobalt makes any difference or not (IE do younger people not get side effects and older people do? as age has not been included to check results on team trobalt).

France is working or using currently a new therapy using an anti epileptic drug and maybe autifony is also an anti epileptic drug which works on T too....
And @DannyBoy said that Large (who created Trobalt?) has produced a newer Trobalt with fewer side effects? Is that correct? Danny Boy said this I think?

 

[Danny Boy]

I would just like to add something small to this discussion re Trobalt as this is being discussed in this thread too.
Saw a bumpkin of an ORL doctor the other day - Dr Dauman of Pellegrin Hospital in Bordeaux. He can be googled and he has attended lots of T conferences. He is apparently quite well known in France for T and runs a specialist clinic for it and is supposed to be a leading expert on T in France - well according to him he is THE top expert on T in France. However I found him to be absolutely useless. Why? Because he spent most of the consultation discussing English / French history and was very proud of his mastery of the English language which he achieved through reading historian Simon Schama books. Why I needed to know any of this after a 210km trip each way I have no idea! He then told me that I should have a fan or water fall sound playing in the room. That was it!
However when I was finally able to get a question in re T, I asked him about Trobalt. He was not surprised and seems to be well aware of the use of Trobalt for alleviation of Tinnitus. All he said to me was ''Yes but is it FDA approved?'' and then he disappeared muttering to himself about how much of HIS time I had taken up!!!
I have added this to the thread because it seems that the knowledge of the use of Trobalt for T is very well known in certain relevant sectors of the medical community even though it is not officially approved (yet?). So we know that Trobalt works -- but we don't know if it is a permanent solution or temporary and we don't know why some people seem to get side effects and others not and we don't know if those who don't seem to get side effects now will not get side effects afterwards and we also don't know whether age when taking trobalt makes any difference or not (IE do younger people not get side effects and older people do? as age has not been included to check results on team trobalt).

France is working or using currently a new therapy using an anti epileptic drug and maybe autifony is also an anti epileptic drug which works on T too....
And @DannyBoy said that Large (who created Trobalt?) has produced a newer Trobalt with fewer side effects? Is that correct? Danny Boy said this I think?

Yes, Doctor Charles Large had an hand in making trobalt. It was in clinical studies where they found people with both tinnitus and epilepsy had improvements in both. So Dr. Charles Large left GSK and created Autifony to create a drug for tinnitus, hearing loss and schizophrenia. So they have diversified their market right there, as it caters to 3 huge groups of people.

 

[SoulStation]

. It was in clinical studies where they found people with both tinnitus and epilepsy had improvements in both.

source?
I was not aware of any studies with trobolt and T on actual patients (other then here on TT)- I know about the important paper that says 1200 is the optimum dosage and compares various k channel modulators but nothing on GSK or Dr. L actually doing a study on Trobolt patients .

 

[Danny Boy]

source?
I was not aware of any studies with trobolt and T on actually patients - I know about the important paper that says 1200 is the optimum dosage and compares various k channel modulators but nothing on GSK or Dr. L actually doing a study on Trobolt patients .

I read this ages ago. Can't remember the source as I read so much these days and can't keep up with all of 'em.

 

[Mark662]

I read this ages ago. Can't remember the source as I read so much these days and can't keep up with all of 'em.

Danny, I can't find any reference to Dr Charles Large and retigabine/Trobalt on the net

 

[Nucleo]

Danny, I can't find any reference to Dr Charles Large and retigabine/Trobalt on the net

http://onlinelibrary.wiley.com/doi/10.1111/j.1528-1167.2011.03364.x/full

He's first author.

 

[Danny Boy]

http://onlinelibrary.wiley.com/doi/10.1111/j.1528-1167.2011.03364.x/full

He's first author.

http://onlinelibrary.wiley.com/doi/10.1111/j.1528-1167.2011.03364.x/full

He's first author.

Thanks for finding that! I seen that ages ago.

 

[Mark662]

I would just like to add something small to this discussion re Trobalt as this is being discussed in this thread too.
Saw a bumpkin of an ORL doctor the other day - Dr Dauman of Pellegrin Hospital in Bordeaux. He can be googled and he has attended lots of T conferences. He is apparently quite well known in France for T and runs a specialist clinic for it and is supposed to be a leading expert on T in France - well according to him he is THE top expert on T in France. However I found him to be absolutely useless. Why? Because he spent most of the consultation discussing English / French history and was very proud of his mastery of the English language which he achieved through reading historian Simon Schama books. Why I needed to know any of this after a 210km trip each way I have no idea! He then told me that I should have a fan or water fall sound playing in the room. That was it!
However when I was finally able to get a question in re T, I asked him about Trobalt. He was not surprised and seems to be well aware of the use of Trobalt for alleviation of Tinnitus. All he said to me was ''Yes but is it FDA approved?'' and then he disappeared muttering to himself about how much of HIS time I had taken up!!!
I have added this to the thread because it seems that the knowledge of the use of Trobalt for T is very well known in certain relevant sectors of the medical community even though it is not officially approved (yet?). So we know that Trobalt works -- but we don't know if it is a permanent solution or temporary and we don't know why some people seem to get side effects and others not and we don't know if those who don't seem to get side effects now will not get side effects afterwards and we also don't know whether age when taking trobalt makes any difference or not (IE do younger people not get side effects and older people do? as age has not been included to check results on team trobalt).

France is working or using currently a new therapy using an anti epileptic drug and maybe autifony is also an anti epileptic drug which works on T too....
And @DannyBoy said that Large (who created Trobalt?) has produced a newer Trobalt with fewer side effects? Is that correct? Danny Boy said this I think?

What a total a**hole that individual sounds. No doubt he charged you a sizeable consultation fee too.

It just goes to show that tinnitus sufferers are on their own. No wonder we have to resort to taking off-label drugs bought online or wherever in an attempt to get some relief.

It reminds me of a visit I made to see Jonathan Hazell, leading tinnitus expert, in London more than 20 years ago. He got quite annoyed when I had questions for him about my tinnitus.

"Why does my tinnitus get worse when I open my mouth, yawn etc?"

Hazell - "It's because you're listening for it"

"What is your opinion of the British Tinnitus Association?"

Hazell - "It's for little old ladies who have nothing to do all day but moan about their tinnitus"

God help us all.

 

[ruben ruiz]

I agree God help us all! Ive seen three ENTs. I learned nothing form them. What my tinnitus is. Do I have any choices
Nada, zilch, nothing. What a terrible situation.

 

[amandine]

What a total a**hole that individual sounds. No doubt he charged you a sizeable consultation fee too.

No thank fully he charged the government a sizeable sum but not me.
Also I told his assistant who was doing the usual hearing test that I had wax in my ear. She looked with her little torch and told me no. I insisted and she insisted that I dont have wax. Four days later I am at audiologist and said I have wax in my ear. She looked and said yes you do have wax and her assistant looked and confirmed that yes I do have wax and maybe pressing against ear drum. So the ENT dept of famous Dr Dauman cannot even see wax in the ear. Also famous Dr Dauman did not even feel or look at my head or nose or ears or jaw or anything at all.
But he sure knows about Trobalt and its effectiveness against Tinnitus.

 

[Mark662]

No thank fully he charged the government a sizeable sum but not me.
Also I told his assistant who was doing the usual hearing test that I had wax in my ear. She looked with her little torch and told me no. I insisted and she insisted that I dont have wax. Four days later I am at audiologist and said I have wax in my ear. She looked and said yes you do have wax and her assistant looked and confirmed that yes I do have wax and maybe pressing against ear drum. So the ENT dept of famous Dr Dauman cannot even see wax in the ear. Also famous Dr Dauman did not even feel or look at my head or nose or ears or jaw or anything at all.
But he sure knows about Trobalt and its effectiveness against Tinnitus.

One word for these people. From the French language - Charlatans

 

[amandine]

One word for these people. From the French language - Charlatan

No a charlatan is someone who pretends to be someone who he isn't. This doctor has plenty of history behind him as a fully fledged doctor working in the french national medical system and he attends numerous T conferences etc.....so he is the real thing as far as the medical field are concerned - just not as far as the patients are concerned. I mean he didnt even ask if anything preceded it starting. He said have I worked in a noisy work place for years and that was it.

 

[Danny Boy]

No thank fully he charged the government a sizeable sum but not me.
Also I told his assistant who was doing the usual hearing test that I had wax in my ear. She looked with her little torch and told me no. I insisted and she insisted that I dont have wax. Four days later I am at audiologist and said I have wax in my ear. She looked and said yes you do have wax and her assistant looked and confirmed that yes I do have wax and maybe pressing against ear drum. So the ENT dept of famous Dr Dauman cannot even see wax in the ear. Also famous Dr Dauman did not even feel or look at my head or nose or ears or jaw or anything at all.
But he sure knows about Trobalt and its effectiveness against Tinnitus.

Sounds like an uppity doctor who won't confess he's wrong, as he's too arrogant to.

 

[Geo]

I think we know more info on T than half of the professionals out there.

 

[Danny Boy]

I think we know more info on T than half of the professionals out there.

That's because a lack of research behind tinnitus, it's only the sufferers that care. The health professionals don't have a clue about it. Nevertheless, because they have no clue, it's human nature to be scared of the unknown, they just laugh and brush it off....That is until they get it.

 

[Xorthian]

@Danny Boy
Do you plan to get off trobalt ? Do you think your volume is permanently lowered?

 

[Danny Boy]

@Danny Boy
Do you plan to get off trobalt ? Do you think your volume is permanently lowered?

I don't plan getting off of trobalt anytime soon. I'm on a low dose of 400mg once a day and it helps take the edge off of living with this...monster. Anyway, I don't want the devil back, so I will have to sell my soul to trobalt.

 

[Mark662]

That's because a lack of research behind tinnitus, it's only the sufferers that care. The health professionals don't have a clue about it and because they have no clue and it's human nature to be scared of the unknown, they just laugh and brush it off....That is until they get it.

There are reams and reams of research papers, trials, conferences and seminars relating to tinnitus. Just take a look at the TRI web site. Research has been going on for 25 years or more.

The problem being, there is no definitive, fully effective medically approved process for alleviating or curing the condition.

Medical practioners have no answer. They are at a loss to explain a way forward to their patients which puts them in an inferior position. No wonder they'd rather talk about Simon Schama and their mastery of English!

 

[Xorthian]

I don't plan getting off of trobalt anytime soon. I'm on a low dose of 400mg once a day and it helps take the edge off of living with this...monster. Anyway, I don't want the devil back, so I will have to sell my soul to trobalt.

Oh okay so if you dont mind me asking:
1. How long have you been taking it in total? Since you T is from 7/2014 I just wonder how many months you were in acute/subacute phase.
2. Do you have louder tinnitus before you take trobalt and then whole day is just better and it comes back before next dose?
3. How your infection went? How long was it, how severe, was it middle ear? Did you take antibiotics?
4. How would you describe your T sound - is it hissing, tonal, white noise, crickets or something entirely else? Before and after starting trobalt experiment if you could.
5. Did you experience any improvements before starting trobalt? Like - did it improve in first 3 months and then it stopped to get better so you took trobalt?

I'm asking since im in very similiar position (ear infection). It would help me a lot.

 

[Danny Boy]

Oh okay so if you dont mind me asking:
1. How long have you been taking it in total? Since you T is from 7/2014 I just wonder how many months you were in acute/subacute phase.
2. Do you have louder tinnitus before you take trobalt and then whole day is just better and it comes back before next dose?
3. How your infection went? How long was it, how severe, was it middle ear? Did you take antibiotics?
4. How would you describe your T sound - is it hissing, tonal, white noise, crickets or something entirely else? Before and after starting trobalt experiment if you could.
5. Did you experience any improvements before starting trobalt? Like - did it improve in first 3 months and then it stopped to get better so you took trobalt?

I'm asking since im in very similiar position (ear infection). It would help me a lot.

No problem. I'll gladly answer

1. I've been taking it for 8 months and no, it isn't stronger than it used to be at all. I took trobalt from the 4th month of having tinnitus.
2. My tinnitus is louder in the morning, but settles down, but I take trobalt after a few hours
3-4. I had reoccurring ear infections, swimmers ear. My tinnitus was a hissing with a loud ringing. Yes, I took antibiotics, this was before I knew what ototoxic medication was.
5. Trobalt's effects occurred from the get go of taking the medication, but you need to taper up.

 

[Xorthian]

No problem. I'll gladly answer

1. I've been taking it for 8 months and no, it isn't stronger than it used to be at all. I took trobalt from the 4th month of having tinnitus.
2. My tinnitus is louder in the morning, but settles down, but I take trobalt after a few hours
3-4. I had reoccurring ear infections, swimmers ear. My tinnitus was a hissing with a loud ringing. Yes, I took antibiotics, this was before I knew what ototoxic medication was.
5. Trobalt's effects occurred from the get go of taking the medication, but you need to taper up.

I have no idea how to use private messages on this forum lol so follow up and clarification if thats okay I will start enumerating from one as well
Its really important to me - as I have now some doubts and fears and you are helping me a lot (its hard to find some good info on ear infections over internet)


1. swimmers ear - its mostly external ear so did you have middle ear infection as well ? I have a wild guess that you did.
2. What antibiotics did they put you on ? Did they give you additional sounds/increased volume?
3. Was there any reason why your infections came back to you time and time again? Was your ear hurting between each episode of infection increase?
4. How you got rid of that infection in end?


Thanks for your answers so far!
As for me I had loud tonal noise for first week and some sort of crickets it all subsided now to hiss that is audible almost all the time but isnt as terrifying as that loud tonal. I'm also bit worried as my ears still hurt month after antibiotic treatment and ent said 2 weeks ago there is still inflammation going on but I refuse to take ototoxic eadrops or balms (they want me to put gentamicin in external canal omg), so I'm going tommorow to another doc. Any advices would be appreciated as well (besides my little q/a above )

 

[Danny Boy]

I have no idea how to use private messages on this forum lol so follow up and clarification if thats okay I will start enumerating from one as well
Its really important to me - as I have now some doubts and fears and you are helping me a lot (its hard to find some good info on ear infections over internet)


1. swimmers ear - its mostly external ear so did you have middle ear infection as well ? I have a wild guess that you did.
2. What antibiotics did they put you on ? Did they give you additional sounds/increased volume?
3. Was there any reason why your infections came back to you time and time again? Was your ear hurting between each episode of infection increase?
4. How you got rid of that infection in end?


Thanks for your answers so far!
As for me I had loud tonal noise for first week and some sort of crickets it all subsided now to hiss that is audible almost all the time but isnt as terrifying as that loud tonal. I'm also bit worried as my ears still hurt month after antibiotic treatment and ent said 2 weeks ago there is still inflammation going on but I refuse to take ototoxic eadrops or balms (they want me to put gentamicin in external canal omg), so I'm going tommorow to another doc. Any advices would be appreciated as well (besides my little q/a above )

1. It was swimmers ear, but sadly some fluid got into the middle ear and that's when the tinnitus started.
2. I can't remember, but it didn't do much as I had to wait till the fulid drained by it's own accord
3, And I don't have a clue, I just kept getting ear infections all the time and it wasn't until after getting tinnitus I started wearing ear plugs, I would have done this sooner if my doctor said it could cause tinnitus. Blooming doctors lol

And my advice would be to get whatever you think is necessary, I could recommend stuff, but I'm don't want to be told off naughty me haha. Anyway, good luck buddy!

 

[Danny Boy]

Right. I haven't taken any trobalt today and tinnitus is very, very low. Last dose was yesterday. So gonna not take any tomorrow and see if results are permanent.