Levetiracetam (Keppra) Worked for My Hyperacusis

Ummmmmmmmmmm..sorry Danny. Was this in answer to my query???

Yeah I know all the clearance and plasma stuff, but it means nothing in relation to "effective dose" for change in action potentials (which is probably very individual anyway), or about temporal aspects over time in relation to effects on APs. As in, does the membrane potential perhaps slowly get affected over time with all the "Keppra soup" in the intra-cellular space? Or is it...when you hit your own "gates hinge strength limits" the supposed channel (Kv3.1 if relevant) opens and the door busts open? In other words...Dose, dose, dose??? Or time, time time???

best, Zim.

 

I can't really find that information sadly.

 

Yeah...me neither. As it is kind of basic to those of us who know the "crappy side effects syndrome" well. (My Trobalt experience and post partum party comes to mind).

Like chemo I guess..."Do you increase dose and muscle through the side effects for the hoped for "good" that results from said sacrifice? Or is it a bunch of unnecessary bosh and suffering for no good reason??? (aka @svintegrity dropping in dose and side effects for better 'result'...over 'time'!).

Oh well... Zim'.

 

http://dash.harvard.edu/bitstream/handle/1/8965599/Robinson.html?sequence=2

http://www.hindawi.com/journals/ert/2012/849540/

 

So you guys have reduced H, so now you can expose your ears to what you couldn't before? Is this a good idea??? Or does keppra protect your auditory system as well? Like wearing ear plugs?

Maybe you are just masking the issue and doing further damage and instead of knowing it/feeling it, your bodies warning system has been disabled.

I can not believe that this shit protects our already damaged ears. Or we under the assumption that our auditory system is not more prone to damage vs a healthy one?

Why, even if this helps, would you go and subject yourself to noise that previously hurt you?

If I had bad knees and was in a massive amount of pain if I ran, then took some pain killers and no longer felt that pain....is it a bright idea to go for a long run because I can't feel the pain? Are my knees now healed and not prone to further injury like they were before?

People are concerned about ear damage and now they feel safe/protected after taking a drug?

 

People are just exposing themselves to everyday noise. It's nice hearing the world normally without amplification and noises not hurting our ears. Anyway, I'm more impressed that a drug can actually rid us of hyperacusis. We've managed to find something even researchers with PHD's haven't achieved. Impressive no?

 

Impressive, no not at all, I can take a pain killer, benzo or drink alcohol and my H is reduced. Doesn't mean I go and hit a pub that normally rapes my ears (even if the noise levels are considered safe for people with normal ears). I use the same caution as if I wasn't using a drug.

My ears are damaged, I'm in the camp that believes that they simply can not tolerate what a healthy ear/brain can.

I would be a complete idiot to think that because I was feeling less H after taking some substance that it was now acceptable to go to places that previously hurt me and made my T rage.

 

Well, personally I don't go to pubs...Anyway, the world is loud, we know that...But hyperacusis makes it more hellish and ear plugs won't solve that issue as you'd hear your tinnitus even louder. So it isn't a win win situation either.

 

Well I wouldn't ditch the ear plugs (keppra relief from H or not), I would protect my ears in the same way as I do now so it does me absolutely no good. I'm worried about further ear damage and tinnitus from noise, not the temporary pain and discomfort caused by H.

 

Perfectly understandable. Maybe when we can regenerate hair cell, you'll have freedom.

 

H can be vanished it happened to me once but because of some stupid mistakes it came back..so i do believe it can help it reduce itself.

 

Mine vanished eventually , well not completely maybe 80% so yeah I think h can be treated if you prevent further noise just for a perioid of time idk how long but mine took around 5 weeks , it's wrong to compeltely isolate you're self from noise that will make h worse , but just any ambeint noise or normal street noise might hurt a bit but it is sti giving you're auditory system some healing , the audio system always needs to be listening to sounds that's it job

 

@swc5150

It would be great if you wrote your experience with Keppra in this thread so that everything is in the same thread.

 

Yea it's a good point @Telis is making..When I drank last year my H would vanish, I felt normal!!! Always came back of course and my stomach put an end to my drinking (fun while that lasted! !!!) anyways I'm still in H hell.

I will be getting keppra soon. I can not wait until the end of august!!!. .but I feel like telis (but different) in that my ears/ brain feel eternally messed up (nerve issue)..So perhaps if Kep works it may be a forever thing and well drugs just don't last forever...

Anyways it went for viking and we have similar symptoms (aside from the catastrophic t but onset with neuralgia etc) so maybe for me too..though he can't say for sure it was kep but it definitely sure seems like it was....and he still no longer has it....

 

He still has catastrophic T :-(

 

I could have written that my ears/brain feel eternally messed up - that is exactly how I would describe myself.

The fact that my T seems to affect my whole head and I feel like I have peripheral neuropathy most of the time makes me detain I have nerve damage

 

My nerves are fried even my doc said thats why my T keeps ramping up...

 

Yep.

 

Well I got pretty "smacko'd" yesterday afternoon so not going to be very verbal here today...(Maybe just my old gut nemesis not Keppra effects).

However, @Telis ...regarding the H and protection, or permanent damage, or remedial damage, or recurrence, or amped/f'd neuronal systems, whatever...In a way it does not matter if one can get some quality of life back. Yes we do what we do to make sure we do not repeat the whole bloody nightmare but if one can go out into the world without earplugs all the time (or a lot of time) and be OK...that is a good thing and the object.

To me, H slowly dissipates over time anyhow. The first time I got H I did not even know what it was (Vol. 2 T in 1980) and thought it was just the "T"...but the H part obviously went away enough within a year or so as I was living a very normal life plus plenty of loud as shit parties when working for a "schmoooze the clients" winery situation in the late 80's...Then I went on to do dance and so forth for over a decade. All had loud music, and loud people, and only seldom did I need to protect. When I could feel it beginning to hurt, or preemptively driving heavy equipment (c/o OSHA). Hell I could even go to movies!
I would say this was a goal and it was achieved. I initially (intuitively and because it hurt) protected until I did not need to...No TT Forums back then to check base with!

What really changed the equation was the ototoxic meds in 2006. Then the H (and the T) became truly reactive, (Vol 3. event). However, with same procedure as previous approach, but more knowledge, I finally got most of my life back by late 2010 and even more so by 2012...BUT I indeed was more protective and could not go to movies and so forth. No idiot stuff. Results of that were quick, clear and dirty. "Reactivity" made sure of that...Yeah, it took longer, but I got back a good part of my "quality of life". The Vol 3. level T became "acceptable" let's say. I did not think about it much (unless got zapped, which very seldom happened as I was highly trained by then at sensing possible noise danger zone ahead).
So in short, Level 3 was a more restrictive life, but a "life" with the H slowly decreasing (slower than 1980 version!) and indeed more protection, but not too onerous. Given that I was older I did not need to feel I was missing much not going to concerts, discos, or whatever.

Now level 4 reactive T and H is a whole different ball-game, and actually dove-tails somewhat well, unfortunately, with what your concern is about "further damage". I DID NOT KNOW I was getting damaged when I was getting hit. It was not 'volume' related, but 'time' related. The other half of the "damage" equation....I forgot it, or spaced it, or thought I was OK as was not 'hurting' except very briefly, but too successively in retrospect. Big mistake.

Level 4 damage is not cooperating in "reactivity reduction progression" as prior experiences. Thus, conclusions are, loosely...as what can we be sure about with this shit???

1. You absolutely can get more damage with exposure to sound, and or drugs/meds (or BOTH in combo = even more so). Anyone who thinks otherwise is just lucky or has better genes.

2. I suspect that with each new level of "damage", the "impact" on either the physical auditory system or the brain/plasticity/neurological screw up, is harder to rectify or reverse. So, better to not have more than one "affair" with T. or H. and avoid any other siren calls that could end that way.

Thus, indeed...Protect and be sensible, as I truly believe that those of us who actually get T have a propensity for it in some way. As why on earth do the countless other idiots who sit in front of Grateful Dead speakers at "500 decibels" (you know what I mean - pick your own WTF examples) for hours NOT get permanent T???!!!
With this propensity, there is thus the possibility of further damage...BUT I also believe that if I had not had a shitload long dose of Neomycin (the most ototoxic aminoglycoside on earth) and then Amphotericin (another ototoxic killer) on top of it...I would still be, "Reactive T and H free"...or as good as. If not more so, as another 10 years of "plasticity normalization" would have taken place and life fully lived. So, from 1980 to 2006 I had 26 years of "life" even after (Level 2) T +H, and would have had 34 years by now. So that is worth bearing in mind regarding...'living with this crap'.

I Keppra can affect the H in a positive way...Bring it on! Then figure out how to deal with "avoidance of repeats" after that. At this point, Keppra is just another "possibility". We have very, very skimpy evidence that it works IMHO...two out of four, and with all kinds of added variables therein with the two success stories.

So let's not jump the gun here and worry too much about the life after Keppra 'problem'!

Right now it would be better to focus on getting more people actually trying the darn stuff, to at least get a better N sample.

Best, Zimichael

 

Thursday...@ 1,000 mg Keppra BID = twice a day. Total = 2,000 mg/day

Vacuum cleaner test for 5 seconds without hearing protection did not feel good.
Kitchen sink "klink" test with a fork dropped into a glass dish, did not feel good.

Still had a sense of slight "inner bruising" right after and for a little while...but hard to tell with H as I am shit scared of doing something too radical and getting more damage permanently. It would be easier to evaluate T volume, as I know that "to at T"...However, no changes there.

Will most likely do a "town noise test" today as running out of cream for my coffee. This is classified as "Class A. important" supply requirement...so will it probably happen.

Incidentally, no headache this morning despite increase from 750 mg dose last night to the 1,000 mg before bed...Ummmmmmmm??? Don't ask!

Oh, and without going into details, (as wrote far too much yesterday)...My current conclusions are that Keppra is about as likely as 'world peace' to be a Kv3.1 modulator of any note.

Best, Zimichael

 

How long have you been on it? It could take a few months.

 

Doesn't caffeine increase T? I wouldn't drink them.

 

@Danny Boy...

...and also post # 375...

Danny, not getting on your case here OK, but you have done more infil' on Keppra than anyone else I know of so, you get the honour...

Question: Where do you get this information from above re "a few months" or "3 months"??? Can you point to the MOA or back-up data that says that please?

You may well recall our 'Kv fan club' response to our key Retigabine paper on this particularly relevant question: Pharmacodynamics of Kv Channel Openers, (2014) by Moore et al.
It shit-canned all those endless pages we had been debating "dose efficacy" or "time efficacy". It became clear, that IF you could tolerate the darn stuff (Trobalt)...aim high, for DOSE! The "tolerate" then became the main mountain to cross, and as you know, Trobalt is no joke to deal with.

Here's the graphic on that to refresh your memory. Nice, hard, core data...Me like!



Fig. 2. Concentration–response relationsofKþ channel openers. (A–D) Inhibition of spike activity...etc., etc.

OK, just to make this clear, as it seems like a few folks on the Autifony Thread thought I was being a "downer" or "naysayer turd" for daring question anything about efficacies, etc., (Geez, on Keppra no less, in the AUT thread...Duh!) here is the reason, plain and simple!

If you look at me, my TT postings, my activity, my attitudes, my "being" prior to Trobalt...then after Trobalt, the astute will notice a massive difference.
Previously = Mr. positive, doing not badly really given all the T & H shit that was mostly unchanged since late 2012. Enjoying the mountains, able to think deeply about neuro-physiology, be active in Team Trobalt, put hours and hours into all this shit...and yadda, yadda, yadda.
After Trobalt = steady, accelerating downward spiral that took me to a place where I even dropped off TT for months. SHITSVILLE squared...that was incredibly intense for 8 months, and only began to ease up a bit after 9 months. There is no other clear reason I can see for this change except some kind of after effects of Trobalt!!! And no, I am not going into details, though a few of you know.

To me, going up in does on Trobalt did me no favours at all except I think, knocked some screws lose (again, for ME, not everyone!) and caused a 747 load of suffering. Big time suffering. I got zero benefit from Trobalt except the thrill of having my bloody H increase 50% for the time I was on higher doses...which was freaky as hell!

OK, is this "theoretical question" about Keppra "klar"??? I would prefer a non repeat of the above. Simple. And yes, Keppra is not Trobalt, but it is still a bloody Psych med. and any such med can have 'unintended consequences'.

Thus, my question...I KNOW that somewhere, for ME (though a 'normal curve' data set would help!), there is an answer to this. DO I KEEP GOING UP IN DOSE OR AM I HEADING FOR MORE SHIT BY DOING SO??? Maybe the 250 mg x 2 per day is the way to go, and not the 1,000 mg x 2 I am on now?!
I mean hell, we have TWO people who are having good results at that dose (@svintegrity and @swc5150 - latter ref AUT thread...) and I am of course just a mere, suffering averse humanoid who would like to avoid a "Trobalt Repeat", or at least not increase dose of Keprra for no 'known reason' if it is not already working!!! After all the first and only response I have had was at very low initial dose, after very first day...where my EEEeeeeeeeeee, went to Ddddddddddddd for a while. Interesting.

Yeah, yeah...it got long again, but I can assure you I could flood this thread with a bunch of neuroscience data about Keppra that I have not even mentioned, to back up this "question". Maybe later.

So @Danny Boy... there you go mate. Ta much.

Cheers and all. Zimichael

 

Well when I do get Keppra ( and I will) I also will be a bit hesitant regarding up dosing as it seems the lower dose is the one that works...

anyways will update 'when' that actually happens. .

 

@Street Spirit ...Remember though that we al react differently to these/a lot of meds. However, prudence would say take it up slowly and adjust as per "effects".

I could say a lot more about that aspect re Keppra and the pharmacodynamics - in relation to epilepsy (but what IS epilepsy if not some form of "over-firing" or "un-inhibition"...in simple English?!), but not yet in relation to T or H. Just guessing there, as most of us know...More later, as I try and piece some of it together and "speculate" thereupon from the epileptic model to the tinnitus and hyperacusis "WTF???" model.

On another note, re my "H and sound exposure test in town" to see if Keppra was doing anything for me yet...I will re-quote from a PM to save my typing fingers:

Yeah, after my town trip yesterday I think I am going to do the..."natural evolution thereof" approach...It is too freaky to be "exposed" so openly, so I have no idea if louder sounds are "H" effect or "Me Reacting" after being so conditioned to be noise averse/aware for so long. It "hurts" somehow, but is that psychological-physical, or internal physio-audile??? I'm not too keen to test it full on, I realized!!! (Boat loads of kids in library, and Natural Foods store was full of people and "danger signals" - juice bar grinders whizzing up, etc. and remodel stuff going on...so plugs stayed in).

So short story is, I am not at all feeling "safe" or OK yet about exposing to louder sounds than normal conversation, in an average ambient situation = probably 60 - 65 decibels. I suspect that is because I do not 'feel' less 'sound pressure reaction' (what words to describe this!!!???) to just loudish normal sounds around my daily puttering at home, etc.

Thus in Keppra speak...I don't really feel it is doing anything...yet. Plus am getting more shit-faced in afternoons.

As mentioned yesterday I have tapered up pretty fast and am at 1,000 mg x 2 per day (not XR extended release version - which don't sit well with me re the capsules effects and my gut anyhow. Plus not recommended c/o a PM and a nuero-psych's input anyhow...Oh and much cheaper for the normal pills!)...
Clearly I have been going at the "dose effect" model, v. the "time effect" model...based on our hard won Retigabine info. BUT...this may be completely erroneous as I have very little belief any more that Keppra has much relevance to the "Potassium Kv channels" we are somewhat hip to.

Oh, and just for fun, I will slip another private "Naysayer Gasp!" in here. (Good F'ing grief - can people be so narrow and uninformed???!)...I think that Tzounopoulos has the clearest, biggest, most accurate handle on the whole T (and possibly H) MOA thing by a loooooong way. And that the Kv channels are where the real action is going to be. So if Keppra is not a Kv modulator....Uhhhhhhhhhhhh, dare I say it??? Maybe get some darts and throw them at the 30 or more classes of AED's (anti-epileptic drugs) out there and pick that one to try.
GASP!!!!!!!!

No doubt more to follow in due course...and a 'disclaimer': All assumptions and information above subject to a brain under the influence...of Keppra!

Zimichael

 

damn your good at breaking it down.. but are you saying the before trobalt you were in better spirits than after your small trial? was it because it failed and your H got worse or just how the drug affected your mood

 

I wish we could vote twice.. so anyways...funny!

and who the hell is Tzounopoulos??!! so many threads...ehhhh I will do a search.

Thanks as always Michael. x

 

Geo...I need to eat breakfast and get off this machine as been doing a lot of PM's too (the "Keppra questions du jour", let alone other "stuff").

Yeah, what was saying above is, that I know my "health/attitude/mood/gut/whatever' variable backwards and forwards (not causes mind you = $20,000 prize for that answer!!!), and post Trobalt all hell broke loose, in numerous ways and numerous manifestations...Bizarre shit, that had me in ER, Urgent Care, docs again, trying bleedin' meds again (Cymbalta for one...Disaster!!!) and a long other list of shit I will not disclose.
My conclusion was clear, to me! Post Potiga...(and yes I DID reach my target "weight dose" no matter what anyone says, and it was to me an "adequate" trial of "potential effects" - hell just look at what effects I DID have during it!!!) So yeah, post Potiga/Trobalt, my life went to hell in a hand-basket. I did not advertise it much as have no concrete proof, just anecdotal evidence and subjective proof. And as you know I tend to go for well founded background checks and hard data. My only data point was MYSELF! Not very objective...and I did not want to 'dampen' the Trobalt thread particularly based on such "unobjective evidence".
I think that is all I will say on this subject if you don't mind. Trobalt is not for sissies! It is an intense med with "unknown" risks really. Last resort material IMHO.

Best, Zim'

 

Lynnn...He is "The Man" in the Retigabine and in the old Team Trobalt world. I talked with him a number of times and much that is not out on the general forum. GREAT guy!...You can search for stuff under:

https://www.tinnitustalk.com/threads/prof-tzounopoulos-university-of-pittsburgh.8280/

His latest stuff with Sci-Fluor is I reckon way more hopeful than Autifony.

Gotta go...Zim'

 

Well, I was on 3000mg and it didn't hurt. I lowered it to 2000mg, as I didn't want to run out. Play around with the dosage. I wouldn't recommend that with trobalt, but keppra is fine. The Max dosage is 3000mg, so it's all cool.