MemberBut you're on at least three different things. Keppra, Trobalt and Cat's Claw. How do you it was the Keppra? Maybe it was the combo Keppra + Trobalt that did it? Or maybe it was only the Trobalt doing everything.
Levetiracetam (Keppra) Worked for My Hyperacusis
- Thread starter Danny Boy
- Start date
But you're on at least three different things. Keppra, Trobalt and Cat's Claw. How do you it was the Keppra? Maybe it was the combo Keppra + Trobalt that did it? Or maybe it was only the Trobalt doing everything.
I've explained this before. Trobalt did nothing for my hyperacusis, when compared to keppra the reactive tinntus was far gone once I used keppra.
quietatnight
Member
Rich
I'm planning on trying to get on keppra next week, please keep up updated on your progress if and when you get on it. And good luck
I hope that it will help both of us.
Louie
I'm planning on trying to get on keppra next week, please keep up updated on your progress if and when you get on it. And good luck
I hope that it will help both of us. Louie
quietatnight
Member
Dan
I wonder why more people are not at least trying keppra ? Do you think it's because their doctors won't prescribe it for them ? I know I have had a hard time finding one that will so far i hope one of the two Ent's I'm supposed to see next week will.
Louie
I wonder why more people are not at least trying keppra ? Do you think it's because their doctors won't prescribe it for them ? I know I have had a hard time finding one that will so far i hope one of the two Ent's I'm supposed to see next week will.
Louie
- May 8, 2012
- 1,601
- Tinnitus Since
- 04/15/2012 or earlier?
- Cause of Tinnitus
- Most likely hearing loss
Well it is true that there are Dr's who will not prescribe meds for off label use probably because of possible liability concerns. Sometimes the benefits outweigh the risks, sometimes not: http://www.consumerreports.org/cro/...escribing-what-does-it-mean-for-you/index.htm
Well, I'm just sad more people aren't trying it...MPT was the only one cured of t when he tried trobalt and loads of people are trying it.
Sounds like a number are trying to get it. Watch this space. If more people have your results then it gets harder for researchers to ignore it. The next question would be how to get it off the pages of a forum and into the research institutions to find out why. Drug companies won't be much interested unless they its something they can patent for themselves.
My guess is to contact hyperacusisresearch.org and let them know. It doesnt have to be a drug company that conducts a trial study. In the case with Campral for T, ATA conducted that one.
I messaged them them. Hopefully they will listen...Personally, I don't trust charities, as cure will put them out of business and they take most of the donation as a salary.
http://www.dailymail.co.uk/news/art...st-8p-10-spent-disease-goes-finding-cure.html
Hyperacusisresearch.org is nothing like ATA and BTA. They are a non-profit organisation. They are serious with their goal and works with the top researchers in the field like Richard Salvi, Charlie Liberman, Fan-Gang Zeng and others.
http://hyperacusisresearch.org/explore-our-research/hyperacusis-research.html
- Dec 24, 2013
- 933
- Tinnitus Since
- (1956) > 1980 > 2006 > 2012 > (2015)
- Cause of Tinnitus
- Ac. Trauma & Ac.Trauma + Meds.
Somehow just found this thread...Yeah I have been having "other mystery medical issues" for months so have been less active on TT in general. However I can add a few things to the discusion:
I think a lot of you are aware of my history by now and that I have T and H...Basically, 4 increased levels of T over 59 years, and the last two "upgrades' (sic) in 2006 and 2012 included 'permanent addition' of H. The volume of my T is insane, but it is the same "Eeeeeeeeee" tone at around 6,000 Hz. I have always had. Just permanently louder with each "upgrade". Somehow I have been able to adapt to it averagely well even at these more recent volume levels. It's the bloody H that "ruins my life" so to speak, and within this "Hyperacusis" constellation...the "SRT" = "sound reactive tinnitus". Which means, apart from the well described Hyperacusis "Gaaaahhhhhh...Owwwww!!!" effect of loudish sounds (say over 60 to 65 dB), the Tinnitus tone itself increases in volume as a "spike" at the same time, especially if the sound is higher frequency or "harder" so to speak. The SRT is thus not just volume related, but also frequency related. The H tends to be more volume related no matter what frequency. The SRT effect can last minutes, hours, or even days if a bad sound hit. Etc., etc.
OK there's the background. Here's the relevant part to this thread.
I agree with @Danny Boy here...I hope more people with H try Keppra...soon! Now!
I absolutely would be doing so as know my doc would have no hesitation in prescribing it (he didn't even blink with the Retigabine). However, my strength, and health stability is way too variable and all over the place right now and until that settles down, I am not touching anything like this. I'm not nearly as 'strong' in spirit (for want of a better word) than I was when I tried Retigabine back in September-October last year. Nowhere close.
I would be ecstatic if my H came down more than the glacial "about 5% per year" that seems to happen for me...But, not able to currently add to my load at present and that is a bummer, as it would be good to see how Keppra acted on super long term T and pretty darn long term H.
The differences between Keppra and Trobalt are "intriguing", and even the idea of combinations done carefully! As indeed there have been hints from a researcher that "dirty drugs" like Retigabine may actually be more effective than silver bullet, laser guided, T drugs like AUT00063....However, that is just a pure "opinion"! No one knows yet.
Mixing Keppra and Trobalt indeed 'complicates' the "scientific evaluation" of what's going on of course, but I think Danny here has given a pretty good analysis or guesstimate of that - for him...Bravo Danny!
In the end, all we 'sufferers' care about is results! Well, safe results. And it looks like Keppra has a safer profile than Retigabine and Flupertine. If docs have prescribed Trobalt, they should seemingly be more comfortable with Keppra too. None of that blue lips stuff to freak them out.
So indeed...I wish more people would try it!!!
Take care all, and good luck. Zimichael
I think a lot of you are aware of my history by now and that I have T and H...Basically, 4 increased levels of T over 59 years, and the last two "upgrades' (sic) in 2006 and 2012 included 'permanent addition' of H. The volume of my T is insane, but it is the same "Eeeeeeeeee" tone at around 6,000 Hz. I have always had. Just permanently louder with each "upgrade". Somehow I have been able to adapt to it averagely well even at these more recent volume levels. It's the bloody H that "ruins my life" so to speak, and within this "Hyperacusis" constellation...the "SRT" = "sound reactive tinnitus". Which means, apart from the well described Hyperacusis "Gaaaahhhhhh...Owwwww!!!" effect of loudish sounds (say over 60 to 65 dB), the Tinnitus tone itself increases in volume as a "spike" at the same time, especially if the sound is higher frequency or "harder" so to speak. The SRT is thus not just volume related, but also frequency related. The H tends to be more volume related no matter what frequency. The SRT effect can last minutes, hours, or even days if a bad sound hit. Etc., etc.
OK there's the background. Here's the relevant part to this thread.
I agree with @Danny Boy here...I hope more people with H try Keppra...soon! Now!
I absolutely would be doing so as know my doc would have no hesitation in prescribing it (he didn't even blink with the Retigabine). However, my strength, and health stability is way too variable and all over the place right now and until that settles down, I am not touching anything like this. I'm not nearly as 'strong' in spirit (for want of a better word) than I was when I tried Retigabine back in September-October last year. Nowhere close.
I would be ecstatic if my H came down more than the glacial "about 5% per year" that seems to happen for me...But, not able to currently add to my load at present and that is a bummer, as it would be good to see how Keppra acted on super long term T and pretty darn long term H.
The differences between Keppra and Trobalt are "intriguing", and even the idea of combinations done carefully! As indeed there have been hints from a researcher that "dirty drugs" like Retigabine may actually be more effective than silver bullet, laser guided, T drugs like AUT00063....However, that is just a pure "opinion"! No one knows yet.
Mixing Keppra and Trobalt indeed 'complicates' the "scientific evaluation" of what's going on of course, but I think Danny here has given a pretty good analysis or guesstimate of that - for him...Bravo Danny!
In the end, all we 'sufferers' care about is results! Well, safe results. And it looks like Keppra has a safer profile than Retigabine and Flupertine. If docs have prescribed Trobalt, they should seemingly be more comfortable with Keppra too. None of that blue lips stuff to freak them out.
So indeed...I wish more people would try it!!!
Take care all, and good luck. Zimichael
Thanks! I do hope you try it and it helps with your h, as I said the science is there. I wish you well and h is horrible, so if you can rid yourself of it, go for it!
quietatnight
Member
Danny Boy
I just wanted to give you an update after my doctors appointment and test's that I had done a couple of days ago. I brought in a copy of this thread and told him about you and Vikings success with keppra, but he would not prescribe it for me. Both of the Ent's that I saw it said that with only 2 people being helped by it that it was just not enough for them to feel comfortable prescribing it" They said if I really wanted to still take it, that they would send me to a neurologist and see if he would go with it. What can I tell you. I still may ask my head shrinker doctor and see if he will.
The good news is, since this morning my tinnitus was very quiet for the first time in a few days and my hyperacusis is settling down on it's own, so I'm please about that.
I hope keppra keeps working for you and others.
Louie
Quietatnight
I just wanted to give you an update after my doctors appointment and test's that I had done a couple of days ago. I brought in a copy of this thread and told him about you and Vikings success with keppra, but he would not prescribe it for me. Both of the Ent's that I saw it said that with only 2 people being helped by it that it was just not enough for them to feel comfortable prescribing it" They said if I really wanted to still take it, that they would send me to a neurologist and see if he would go with it. What can I tell you. I still may ask my head shrinker doctor and see if he will.
The good news is, since this morning my tinnitus was very quiet for the first time in a few days and my hyperacusis is settling down on it's own, so I'm please about that.
I hope keppra keeps working for you and others.
Louie
Quietatnight
It shouldn't be like that...Before tinnitus, I never went to the doctors...And if I can get this down to a 1-2 then I'll never go to them again, well...Until autifony's drug comes out.
They got back to me and said this "We will investigate. I forwarded the info to one of our partnering researchers who does animal studies which is what would be required as a possible first step." Don't understand why they need to test a drug already out on an animal model...I mean keppra has an unknown mechanism. I would rather them trial it on humans, as the drug has been tested on humans. I responded with this:
"Keppra has already been tested on humans, for epilepsy admittedly, but it's still been tested. It's a generic drug now, so it's been on the market for a long time. Campral was tested for tinnitus without needing animal models...Also, KV3.1 modulators have been already tested on animal models, see Autifony for example. Autifony's drug has been tested already which is in phase 2 testing. My advice is just try it on people with hyperacusis, it can be reapplied for hyperacusis.
Kv3-family potassium channels such as Kv3.1 are typically expressed in rapidly spiking neurons and in brain regions such as the auditory brainstem, where firing at high rates with high temporal accuracy is absolutely required for sensory processing. One characteristic that distinguishes these channels from other voltage-dependent potassium channels is their very rapid rate of activation and deactivation in response to transient depolarization. In addition, Kv3 channels typically activate only at positive potentials (>- 10mV). These features allow neurons to fire at high frequencies (up to ~800 Hz). Until now, manipulations of levels of Kv3 currents in neurons have required genetic manipulations or use of the non-specific potassium channel blocker tetraethylammonium ions (TEA). We now report that two imidazolidinedione derivatives, Compound 1 and Compound 2, specifically increase and decrease Kv3.1 currents respectively. Using CHO cells stably transfected with Kv3.1, we have found that 10μM Compound 1 shifts the voltage of activation of Kv3.1 currents towards negative potentials, producing as much as a 131.3% increase in current at membrane potentials close to -10mV. Numerical simulations of the firing properties of auditory brainstem neurons, predict that increasing concentrations of Compound 1 would be expected to decrease firing rate in response to high frequency stimulation (400 Hz), but to increase the temporal accuracy with which actions potentials are phase-locked to the stimuli. In contrast, the compound Compound 2 produced a sustained shift in voltage-dependence of inactivation to more negative potentials, as well as altering voltage-dependence of activation. Although Kv3.1 channels usually inactivate only very slowly during sustained depolarization, the rate of channel inactivation is also markedly increased in the presence of Compound 2. Thus the net effect of this compound is to suppress Kv3.1 currents in the physiological range of membrane potentials. In numerical simulations, Compound 2 had a biphasic effect on excitability. Low concentrations increased the rate of firing in response to 400 Hz stimulation whereas higher concentrations prevented neurons from responding to highfrequency stimulation, as is found in mice in which Kv3.1 has been deleted. Modulation of Kv3.1 currents represents a novel avenue for manipulation of neuronal excitability"
SoulStation
Member
You guys are beutiful! Ive beek lurking around this site for 1,5 years, just to find something like his! I only have H, but not severe enough to ask my doc the keppra, i found my remedy in LLLT but ears still feel sore. I feel like im one set back away from quitting work again and isolate from my family. I'm looking fwd for more feedbacks on this!
Edit: i also love how Lapidus questions this "cure". Like scientist approach to things. kudos!
Edit 2: so the other name to Kappta is Levetiracetam? Racetams are usually quite accessible, i wonder if this too.
Yep, I'm upping my dose...I'm seeing if a mixture of campral, trobalt and keppra will do anything.
@Danny Boy did/are you taking Keppra and Trobalt at the same time? Do you have to change either dosage because of this? ... I got my trobalt today and will go to doctor to get a QT check-up ... also want to ask for Keppra cause today ears hurt. But just wondering if I can start both at the same time.
SoulStation
Member
Please don't take this the wrong way, but in my opinion to be cured of something you have probably stop taking medication for it. I'm not trying to take away the merrits of what you're doing but wouldn't it be wise to not make statements about the curative properties of substances until you are off of the substance? does anyone see my point here?
I dunno man...I just know if my t goes back to baseline, I won't last for long.
SoulStation
Member
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