Maybe they can't get a prescription? Did you find a doc who's willing to experiment?
If Your Tinnitus Vanished, How Would Your Life Change?
- Thread starter Danny Boy
- Start date
Maybe they can't get a prescription? Did you find a doc who's willing to experiment?
Member
I would cry from happiness for a whole month, but then being the anxious person that I am I would live the rest of my life worrying that it will come back.
What a lovely sentiment.
Keppra is quite safe and is used in european countries for the treatment of tinnitus.
Eh, you're just describing mine.
What do you mean with 'cured' ?
You took one course of pills and now you've got this result? Or you still on those meds to keep your T down?
Keppra has cured my hyperacusis...Also since upping the dose of keppra and using trobalt one single time a day, I am now down to a 0-1.
@Danny Boy , don't overdo the meds they may kill you in the long run. Unless that's your plan of course.
Keppra is quite a safe drug and the trobalt dose is 400mg once a day. I've had no adverse effects from keppra, trust me, I'd stop if it were harming me.
Haha...I don't even drink alcohol nor do I smoke. Hardly an addict. Trobalt isn't really addictive nor is keppra. Then again, if eating pizza lowered your tinnitus, how much pizza would you eat? Addiction is different to needing something to alleviate tinnitus which was forcing me to kill myself.
@Danny Boy , you said Trobalt makes you drunken.. so.^^
Actually, addiction is the need/urge to get 'something' even if that seomthing may kill you in the long run. Maybe you are too drunk to hear T. I'm just saying.
Lot of pizza. I like pizza.
Actually, addiction is the need/urge to get 'something' even if that seomthing may kill you in the long run. Maybe you are too drunk to hear T. I'm just saying.
Lot of pizza. I like pizza.
Haha...Well, I don't even want to take trobalt, I really don't...If my tinnitus vanished I'd be off it in seconds...Sadly, it's fear of it coming back which hits me hard...I was so close to killing myself before I was on trobalt...When I first got the few boxes I didn't want to take it, as I was scared...I was given white noise maskers but my tinnitus reacted to white noise and it spiked it that very night to a level where I was banging my head on a wall, I truly in that moment wanted to die and I decided then and there that I would have to take trobalt, as I couldn't just give up, I have my beautiful daughter to take care of, I couldn't just leave. It was horrible, I wrote a suicide note and nearly did top myself, if it wasn't for trobalt I wouldn't be here talking to you or anyone. I'm not an addict, just want to live and breath.
Deep words, I can relate to. I did smash my head on more than one occasion. I have a suicide note on my desk etc.
Just be careful with all the meds. Like with everything, the amount makes the poison.
Just be careful with all the meds. Like with everything, the amount makes the poison.
- May 8, 2012
- 1,601
- Tinnitus Since
- 04/15/2012 or earlier?
- Cause of Tinnitus
- Most likely hearing loss
It's not that people don't want to. It's not easy for everyone to do. Some can't afford it. Some have Drs who will not prescribe off label use, some don't want to, some don't need to and then there are those don't trust it when someone uses the word "cure" all the time (yes you Danny Boy). I know you mean well and are enthusiastic but people around here are cautious.. "Cure" is reserved for those treatments like Tinnitus Miracle.
Keppra costs £8.50 for a month's supply, which is $12.44!? So surely cost can't factor into it, all that needs to be done is to persuade a doctor to prescribe it off label. I used the word 'cure' as both me and Viking have been cured. Many people have tried trobalt and the attention is being given favourably to trobalt, even though trobalt is far more expensive (£150, $219.47 for a months supply, of 400mg) and dangerous. Trobalt isn't a cure, I freely admit that. But keppra for hyperacusis there is far more potential and it's not snake-oil, it has real science behind it. Keppra side-effects are minimal so far I've had a mild headache. Plus you don't need to be on keppra for long, what is there to lose, only your hyperacusis. If more people trialled this drug we'd know a result, but how can we when nobody is interested?
I'd go back to living in China (I'm not Chinese BTW) and I'd be able to do so much more because I'd have more energy and be able to see properly instead of falling all over the place or lying in bed vomiting.
SteveToHeal
Member
I would be a changed man. I would sleep again and have more energy. I would not wake up every day with fear and depression. The constant worry of how am I going to survive would be a thing of the past. What does my future hold? A life like this is not a life worth living. Negativity would be gone. I could go back to work or apply intense concentration on a new venture / business / try something new. I could make decisions easy again. I culd see a bright future again. Hope would return. Maybe I am not getting this as so many ppl have overcome this. Befriended it almost. I am probably my worst enemy. Me and my buzzing head. They say Silence is Golden for a reason.
Here in the U.S., it's not easy to find a doc who's willing to experiment. If we can't get it, then it simply isn't an option.
@Danny Boy I'm in europe and you too but none of the doctors I saw said that keppra is usefull for tinnitus
I guess none of the doctors were useful for tinitus either
What did you expect.
They surely won't say that Trobalt/Keppra is good for T. So what?
When it comes to Trobalt and Keppra you're on your own to try it if you have extreme T.
I'm scaried to try trobal and keppra why aren't safe drugs. And if I decide to try IT where can I buy it?I guess none of the doctors were useful for tinitus either
What did you expect.
They surely won't say that Trobalt/Keppra is good for T. So what?
When it comes to Trobalt and Keppra you're on your own to try it if you have extreme T.
Keppra seems to be safe. It's and old and tested drug. Even my psychiatrist agreed to give it to me.
Trobalt is another story. If you have extreme T and can't go on then you should consider trying it.
You can get it in Spain. Maybe Danny will tell you if he's conscious.
but ask your questions in the Trobalt thread...Trobalt and Keppra seem to take over every thread
Trobalt is another story. If you have extreme T and can't go on then you should consider trying it.
You can get it in Spain. Maybe Danny will tell you if he's conscious.
but ask your questions in the Trobalt thread...Trobalt and Keppra seem to take over every thread
- Aug 21, 2014
- 5,049
- Tinnitus Since
- 1999
- Cause of Tinnitus
- karma
It's an old and tested drug with a well established side effects profile which includes severe emotional instability up to and including psychotic breaks in some extreme cases. I wouldn't exactly call that "safe"?
Literally the only data I've seen on Keppra being useful for T/H comes from a single person on this forum who seemed to recover from their condition well within the usual timeframe when a significant percentage of T/H suffers show spontaneous recovery without playing pharmaceutical bingo. Which is to say, maybe it helped, maybe it didn't, but without a large-sample-size double-blinded study, we are stabbing in the dark.
Of all the racetam compounds, fasoracetam seems to me to be the most likely candidate for tinnitus relief because it's known to interact directly with GABA(b) sites and cause increased dose efficiency of GABA(b) drugs known to have a temporary effect on tinnitus (β-phenyl-γ-aminobutyric acid). I thought that was interesting enough to procure some, but so far I've been hesitant to experiment with it very much...
Well as you possibly know, every drug has some side-effects. If you look close enough you will find those cases.
But I also read about many people with epilepsy who take keppra for years without serious side effects.
So theres that.
And that case report seems kind of extreme, there were even 3 other drugs which the patient took at the admission time. I dont think that report is very neutral. But whatever.I get your point.
Beside Danny there was also Viking who wrote that it helped with his H. So two persons I know...
Im not an advocate of drugs. Really not. ADs ***** up my T.
And I know that you're very against drugs given your medical history and you have always your "nih.gov" links ready to paste.
But dont forget. You're the person with the mindfullness approach.
But not every severe case of T will be resolved or helped by that. (I think we already agreed on that in other threads)
If you have the most severe of Ts and you're life consists of trying to survive the day and you wish you were dead, then I guess you will accept those risks because the alternative is waiting years for such stuff like autifony and thats not good enough for me. I dont have years.
I dont think people plan on taking Keppra/Trobalt forever. In my case its survival. I tried your "brain structure changing" stuff like qi-gong, mindfullness for months. When my severe T started. it helped me relax, but then it mutated into several sounds and those techniques were worthless to pursue.
But I also read about many people with epilepsy who take keppra for years without serious side effects.
So theres that.
And that case report seems kind of extreme, there were even 3 other drugs which the patient took at the admission time. I dont think that report is very neutral. But whatever.I get your point.
Beside Danny there was also Viking who wrote that it helped with his H. So two persons
I know...Im not an advocate of drugs. Really not. ADs ***** up my T.
And I know that you're very against drugs given your medical history and you have always your "nih.gov" links ready to paste.
But dont forget. You're the person with the mindfullness approach.
But not every severe case of T will be resolved or helped by that. (I think we already agreed on that in other threads)
If you have the most severe of Ts and you're life consists of trying to survive the day and you wish you were dead, then I guess you will accept those risks because the alternative is waiting years for such stuff like autifony and thats not good enough for me. I dont have years.
I dont think people plan on taking Keppra/Trobalt forever. In my case its survival. I tried your "brain structure changing" stuff like qi-gong, mindfullness for months. When my severe T started. it helped me relax, but then it mutated into several sounds and those techniques were worthless to pursue.
For those who want to try drug therapy of any kind, I'm glad it is helpful for T, H or both. I think it's great to make others here aware of personal experiences and stories so we can all have that knowledge base. However, throwing around the word "cure" when there is no evidence for it curing H beyond the personal experience of a few individuals can be misleading.
I can completely understand the state of mind where someone is looking at kicking the bucket or trying a medication, I don't judge anyone's choices when dealing with that hellish point in T or H. But, a lot of people aren't necessarily at that point and aren't interested in the risk associated with trying a new drug. It may be tested, but everyone reacts differently. I take a medication for another health condition, it's incredibly common, tested over decades, taken by thousands. It has two preparations. My doctor gave me the 1st preparation when I was first diagnosed, and within 8 hours of taking it I was violently throwing up, headache, sweating... Thank heaven the 2nd preparation didn't do that! All that to say, it might give you, and the bulk of people, a headache, but there's the risk of it doing something more sinister.
Especially with all of us knowing that feeling well of being in the unlucky lower percent of concert goers, ear-syringe cleaning receivers, drug takers etc. who got T as a result of otherwise normal activity/tested drugs, I think we have to be understanding of people who are generally coping being slow to take those kind of risks without researched evidence.
I can completely understand the state of mind where someone is looking at kicking the bucket or trying a medication, I don't judge anyone's choices when dealing with that hellish point in T or H. But, a lot of people aren't necessarily at that point and aren't interested in the risk associated with trying a new drug. It may be tested, but everyone reacts differently. I take a medication for another health condition, it's incredibly common, tested over decades, taken by thousands. It has two preparations. My doctor gave me the 1st preparation when I was first diagnosed, and within 8 hours of taking it I was violently throwing up, headache, sweating... Thank heaven the 2nd preparation didn't do that! All that to say, it might give you, and the bulk of people, a headache, but there's the risk of it doing something more sinister.
Especially with all of us knowing that feeling well of being in the unlucky lower percent of concert goers, ear-syringe cleaning receivers, drug takers etc. who got T as a result of otherwise normal activity/tested drugs, I think we have to be understanding of people who are generally coping being slow to take those kind of risks without researched evidence.
I think there's not a single person besides Danny Boy who does that. But beside that you're right
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