On Retigabine ...

[amandine]

@attheedgeofscience please may i ask two simple questions? Why are you taking trobalt when your T volume is so low and why cant you use and complete the retigabene users form like everyone else on here?

 

[attheedgeofscience]

Why are you taking trobalt when your T volume is so low

See this as an example...

The first round has been the most beneficial and did bring my T from 3 or 4/10 to 0.5 or 1/10 on average (generally 4-5 very good days and the 1 or 2 more bothersome days, real bad days were very rare, only a few during my first round).

 

[Codaz]

I have already stated I am going to wait a little. I don't like to draw hasty conclusions. In addition, this forum still has two "camps" so-to-speak. One that you could call the Nagler-camp, and, one that you could call the pioneer-camp.

In my personal opinion, Dr. Ancill is entirely correct when he mentions the following:

But of course, you have the die-hard-I-want-irrefutable-proof-Nagler followers who will not agree to anything unless it - the proof - of a medical study has been peer reviewed in +20 journals of science or medicine. There is nothing these guys enjoy more than to tear everything apart. Especially if they can do it in public.

See what I mean...?

The same with hyperbaric oxygen therapy. The professor there told me if it didn't work we would not do it, and it is not proven in a lot of papers but if we only rely on things that are proven in science then we might as well throw everything out of the window. Then he did not sign me up for it but okay.

 

[Song interpreter]

If I weren't so sensitive to medications and their side effects, I might try one of these medications to bring my tinnitus down to something I could ignore and make my less sensitive to loud noises.

For now, I will pursue in ear monitors that block sound so I continue to interpret songs for the Deaf. Also, one of the sound techs is on my side to reduce the decibel level to something safe for all.

 

[wishingluck]

an admirable response, Dr Nagler, that of having the opinion of no opinion. A doctor has to think like a scientist, he can't 'take sides'. No concrete evidence, no opinion. I will have to try this retigabine., out of curiosity.

 

[wishingluck]

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.

I agree. I saw two ENTs. An appalling experience. It was like listening to madmen.

 

[wishingluck]

These forums kicks ass.

 

[wishingluck]

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

Christian, get the free downloadable leaflets from the British Tinnitus Association and look for similar information from ATA. I have found these leaflets to be better than several books on tinnitus. The only good book I have read about tinnitus so far is an old and dated one from Jack Vernon. All the other ones I have read are crap.

 

[wishingluck]

Dear @Dr. Nagler 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.

These things aren't so surprising....even scientists do this stuff.

 

[wishingluck]

when it's low or high, i can objectively tell.

That's what a lot psychologists just don't get. They think that for the mind, a whisper it's the same thing as an explosion.

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

Have you guys heard of Glen Heggstad? I watched his horrific story on the series 'Locked Up Abroad' and read his book. He started travelling around the world on his bike as a big middle finger to his life-changing experience.

The real Easy Rider. Awesome.

 

[wishingluck]

We may see 'treatments' soon, and we already have various medications that can - in some cases - reduce the perception of tinnitus: eg. anti-anxiety and antidepressant medications.

I just don't get it. One takes 'anti-anxiey' pills and it will reduce the 'perception' of tinnitus? If so, why don't they also reduce the 'perception' of all noise, including the TV, the radio, traffic noise?

It's not a 'perception' problem. Loud and quiet, it's as real as long and short, empty and full, poor and rich, etc etc.

The volume is objective, it's not subjective. There's a huge difference if someone speaks to me quietly or they scream at me.

Sorry, not trying to be dim. Thanks for your time.

 

[wishingluck]

But you didnt get impaired vision from it did you?
nor did you get any issues with it except it killed your T?

If Trobalt really worked, I'd be willing to get all green and wear thick glasses. I would make the jump in an instant, with no regret. (after the drug is sure to work effectively against T and medically researched)

 

[wishingluck]

Note that Trobalt is actually a scheduled drug in the US; this means that it is not legal to obtain it from an online pharmacy under any circumstances. (Drugs which are merely "prescription only", as opposed to scheduled, can technically be legally obtained from an online pharmacy which follows a particular paperwork trail -- on the other hand, drugs which are scheduled, have the huge and draconian weight of the Controlled Substances Act behind them).

I am really curious as how many people with severe T would care more about abiding by a law, than getting rid of this....disaster.

I am a law abiding person. However I do not put law above anything else, under all circumstances, although I will try my best to do that first.

 

[wishingluck]

That's okay, @dan, I ain't skeered

@linearb, I wouldn't order from an online pharmacy. .

I would not do that either. Although I don't remember details, I have read somewhere of a product bought on an online shop, it contained traces of faeces.

I bought Vinpocetine some time ago from an online shop and was paranoid even about that.

 

[Christian78]

My t worsened final 8th time, now every morning i plan to take trobalt, i made 160 pills of 100mg and 16 000mg or 16g will be enough. I cant get any help, and this shit is getting worse and last 30 days is worsening slowly up. Sweden has money for refugees but not their own people. They dont want to do nothing, i have no psikologist, doctor dont have time, hearing department dont want to receve they say we done all we can, nothing it left, and in a way I am glad... this horror finaly end, i just think i cant make organ donation becouse it will be poisoned with with trobalt... I wish that they burn me and put in a seal metal box and drop in ocean outside Göteborg. If you dont see me again you will know why not

I love you @amandine and miss our times when my t was baby, and rhea and danik... and marko and all of you

Christian M Davison
Member of Clan Davidson
Nobility of Highland, Scotland

 

[Cor]

Hi christian78, there is no option to see a psychiatrist? I've been where you are, but a psychiatrist helped immensely. That and drugs(*). Better living through chemistry right? As long as you have a long term goal with those drugs.

There will be better days.

Cor

(*) with drugs I mean psychoactive drugs like xanax, not the smoking kind, which with me living in Amsterdam is always a possibility.

 

[Christian78]

Hi christian78, there is no option to see a psychiatrist? I've been where you are, but a psychiatrist helped immensely. That and drugs(*). Better living through chemistry right? As long as you have a long term goal with those drugs.

There will be better days.

Cor

(*) with drugs I mean psychoactive drugs like xanax, not the smoking kind, which with me living in Amsterdam is always a possibility.

I been to psychiatrist and got some medicine that cause tinnitus. I have psychiatrist who cant do nothing. Swedish health is ruin, my doctor , infection clinic, and psychiatrist rent referral to neurology and they dont wanna take me.

They have money to 200 000 arab refugees who then legally immigrate 400 000 their children and wives but government say 200 000 only asilants, not real number. they got homes and all, i get to die.

For me point is my left ear is lousing hearing rapidly and i suppose that is reason new freq appear. 1,5 year ago i could hear from 8,5 to 13khz, not i dont hear it at all on left ear but on right is totaly same, hear it perfect.

so, no this is it, i got even tonight new tone (that i hope it will be gone tomorrow) but as @markoana know that i before got it also like few sec and longer and then it stayed, so i dont have any hope...

Silvio is ID**T who think i fell into depression and that is only reason why my t is worse, he thinks i imagine it. Well he can go into his depression and dont comment stupid thing when he does not have nothing to say, and he is right on his photo it say pup artist, it maches him totaly!

 

[linearb]

Hi @Christian78

I understand you are suffering tremendously, but lashing out at people here who are trying to be helpful, is not going to make you any better.

 

[Christian78]

Hi @Christian78

I understand you are suffering tremendously, but lashing out at people here who are trying to be helpful, is not going to make you any better.

He, mr Pop Artist as he put wrote me a letter:

"Stvarno mi te je zao. Ja ipak mislim da je to tebi od depresije. Ne sam tinnitus nego pogorsanja. .............. Mislim da bi ti bilo bolje kad bi se mogao izvuci iz depresije.

He is sorry for me. And he still thinks it is depression. (read i imagine it). He meant not only on T but on worsenings. And he is sure if i get out of depression i would be ok.

Well I am at least depressed, yesterday i walked 12km, today 7km, i don't have time to get depressed because of people around me. But I know him, we speak same language, and he is pop artist (i don't know honestly what is means, probably seronja).

He know as we spoke so many times about it and how it became worse and worse and worse. I dont need some person who lives with hearing aids and dont go out without them, who is terrified and was manically depressed for last few years to tell me i imagine my t went worse.

It was totally disrespectful and that is actual quality of pop artist. He just dont know what to do so come to offend and give opinions that crush hopes, hurt people and make them feel miserable.

i can produce papers of my psychiatrist wrote i am not depressed at all except little when t is to hard on me, and same thing is written in papers from Neurologist from Switzerland. When i got t i became depressed and i started eating not moving. When i started using trobalt my tinnitus fel for minimum 80% . I used it to lose 24 kg in less then 3 months. I spent walking 12km... being happy... I am not depressed I have tinnitus that is progressive. And with it i apologize to pop artist, and i wish him same type of tinnitus to get and to fix it with depression. I am sure he will realise it is just "IN HIS HEAD"!

And yes, I stoped being nice when someone is hurting me and playing smart, because i dont have to prove anyone my suffering. I am not depressed. It is in morning hard and evening and i hate it when i have no control and i hate it because of stress it gets worse. And i cant make is stop. I can not get used to every new lvl of tinnitus, i did done it as dr negler said (i never beleave a person can get used to until some lvl) but i did got used to it.

Now i cant it is killing me. And i see that is geting worse faster probably becouse t istself couses stress. 12 months ago i could hear up to 14kg, then it fell to 12khz, now it is on 8,5khz, i listen same sound and right ear hear it normal and left is deaf. A year ago it was ok, not it is well as it is. And I dont care about some idiots who come and say they are sorry for you but you are imagining this it is all in depresion. He may as well start working as ordinary ENT who say same thing and dump you to psikolist.

No more pop. ONly truth. People who suffer from tinnitus are not depresed becouse they feel so, they are depresed becouse their life has been taken away from them, and there is no antidepresive pill that make you feel good! People suffer becouse of tinnius, not depression. truth is releasing depresion may give you better chance to suffer less from tinnitus. But making tinnitus lower but still if your life is taken will not take away depresion.

 

[Telis]

He, mr Pop Artist as he put wrote me a letter:

"Stvarno mi te je zao. Ja ipak mislim da je to tebi od depresije. Ne sam tinnitus nego pogorsanja. .............. Mislim da bi ti bilo bolje kad bi se mogao izvuci iz depresije.

He is sorry for me. And he still thinks it is depression. (read i imagine it). He meant not only on T but on worsenings. And he is sure if i get out of depression i would be ok.

Well I am at least depressed, yesterday i walked 12km, today 7km, i don't have time to get depressed because of people around me. But I know him, we speak same language, and he is pop artist (i don't know honestly what is means, probably seronja).

He know as we spoke so many times about it and how it became worse and worse and worse. I dont need some person who lives with hearing aids and dont go out without them, who is terrified and was manically depressed for last few years to tell me i imagine my t went worse.

It was totally disrespectful and that is actual quality of pop artist. He just dont know what to do so come to offend and give opinions that crush hopes, hurt people and make them feel miserable.

i can produce papers of my psychiatrist wrote i am not depressed at all except little when t is to hard on me, and same thing is written in papers from Neurologist from Switzerland. When i got t i became depressed and i started eating not moving. When i started using trobalt my tinnitus fel for minimum 80% . I used it to lose 24 kg in less then 3 months. I spent walking 12km... being happy... I am not depressed I have tinnitus that is progressive. And with it i apologize to pop artist, and i wish him same type of tinnitus to get and to fix it with depression. I am sure he will realise it is just "IN HIS HEAD"!

And yes, I stoped being nice when someone is hurting me and playing smart, because i dont have to prove anyone my suffering. I am not depressed. It is in morning hard and evening and i hate it when i have no control and i hate it because of stress it gets worse. And i cant make is stop. I can not get used to every new lvl of tinnitus, i did done it as dr negler said (i never beleave a person can get used to until some lvl) but i did got used to it.

Now i cant it is killing me. And i see that is geting worse faster probably becouse t istself couses stress. 12 months ago i could hear up to 14kg, then it fell to 12khz, now it is on 8,5khz, i listen same sound and right ear hear it normal and left is deaf. A year ago it was ok, not it is well as it is. And I dont care about some idiots who come and say they are sorry for you but you are imagining this it is all in depresion. He may as well start working as ordinary ENT who say same thing and dump you to psikolist.

No more pop. ONly truth. People who suffer from tinnitus are not depresed becouse they feel so, they are depresed becouse their life has been taken away from them, and there is no antidepresive pill that make you feel good! People suffer becouse of tinnius, not depression. truth is releasing depresion may give you better chance to suffer less from tinnitus. But making tinnitus lower but still if your life is taken will not take away depresion.

Yeah I agree, you can only do so much as far as depression is concerned. I'm the same, lots of workouts, low depression, no anxiety, but I still suffer like a beaten dog every day with tinnitus noise, hearing issues, and ear pain.

It's the go to when when people don't have an answer for you, blame it on mental illness! this is why there will not be a cure, even most experts think that bothersome tinnitus is reserved for the mentally ill and can be solved with ADs or whatever.

I wouldn't even try to justify yourself to others Christian, just nod and agree, it's not worth your effort mate.