Levetiracetam (Keppra) — Another Possible Potassium Channel Modulator?

I do feel my ear a bit clogged, or lacking the dynamic range it had. What I perceive as hearing loss is my hyperacusis. I feel that certain high frequencies come out distorted, or are absent, (like a bad encoded mp3 file, how I detested those...). I am terribly annoyed by high frequency sounds, like a plastic bag, or even paper getting dragged on a desk! Could be the tinnitus tone that affects them, of course... Or that instead of these nice high frequency sounds, due to cochlear damage, I do hear something else now: My "beloved" T!

My audiogram starts falling at around 6000 where it reaches 8000 at 20db or more. Some docs find it that 6000Hz hit the 20db mark and at 8000Hz I must go up to 40 to listen. Nobody did a tinnitus measuring, no one did OAE Testing, or ABR. They just say there is some POSSIBLE (!)hearing loss at high frequencies and that's it. Of course, an audiogram that goes beyond 8000 hasn't been done (asked for it the answer was there is no such thing). A few other said I have a capability of listening to very high frequencies, so I perceive my Tinnitus as being too loud, although it exists in high frequencies. I do hear up to 16000Hz or more, but still that does not give me comfort. If that is the case, I wish I didn't have so good haring!

One doctor said that if I had an acoustic trauma the hearing loss should be around 4000Hz and more than 20 db. What I have doesn't qualify, so, something else is what I have. And the MRI of the ears confirmed it was indeed mvc.

I thought it is for staccato type T... Anyway, traveling to Belgium for an ambiguous therapy like this doesn't seem so appealing at first glance: It requires 20 or more days of staying there just in the hope of being at the 50% to get that 43 percent of reduction... I don't exclude it (what else can I do) but seems to me it is difficult to do with less than satisfying results.
Pure tone tinnitus that fluctuates (in good days...) is the most disturbing sound I have. Other than that, a morse code-telegraph tinnitus is my secondary or third sound, and there is a hissing like water through a pipe. All of these I've heard before the acoustic trauma. I remember them. They didn't bother me then, I didn't have hyperacusis, or the sensation that I lack certain frequencies then. They where also not so loud. But it DID have decreased tolerance to sound this summer (before the acoustic trauma in September)!
Complicating isn't it?

Your opinion is highly noted my friend, and is happily accepted with less skepticism than a LOT of those docs I 've visited... I can't thank you enough for your advice! I wish I could persuade my doctors about these meds, they are stuborn although they provide no results whatsoever!

PS: Note that currently I am also under celestone chronodose (corticosteroids), 3 injections in 3 weeks, along with neurobion 3 shots a week. Last Friday I did my third injection of celestone. I don't know if I will go on. Can't say it did much other than brief (one day or two) periods of less sound but could be due to my Tinnitus flexibility... The last 2 days have been rather calm, so I will decide in a few more days when the monster comes back full force!

 

@skoupidis try n-acetylcysteine(maximum 5 days) & corticosteroids & pentoxifylline together.
Also you can add in your food full amino acids (those get bodybuilders) and get some oxygen.
If it is from cochlea you maybe see a difference of 1-2 (perhaps more) in 10 scale.
Your T maybe mixed cochlea & mvc.

keppra/retigabine maybe help you but because you problem is fresh i think you must target
to improve the cochlea before target central nervous system.

You say that in you country your case is seen like flu i can inform you that 99% of ents
does not know the problem so is logical to not understand the severity.
Also when my problem (like yours) passed and forgot it 1 year later i heard others with the same
problem and i can not understand them (maybe understood them 5-10%).
So don't wait to understand you search for a solution others understanding the problem will not help you.

 

@Viking - you are a brave man and I respect the lenghts you are going, which someday might help all of us! you are in my prayers!

 

I agree about all the complications. Also I find myself faced with a wait that has lasted six months, traveling to Switzerland for a clinical examination very new, paying a lot of money and I do not know if anything can be done later. I hope so. But if I don't try, I'll never know!
i think it could be the same for you. If the Doctors don't try a meds... how do they know already that it does not work?
I'm near you!
best wishes

 

It's odd because trobalt helps with my h? So who knows what's going on?

 

Each of us has a different medical history, and a different response to drug treatments.

 

Thank you for your advice, I too thing that cochlea damage is more urgent but: I have tried corticosteroids before (full injections for 2 times a dy 4 days and then pills) 10 days after trauma, and also stugeron with vitamins for quite some time (2 months) with no result at all. So, thought a nerve approach would be next in line. No results there either with Neurontin for 1 month...
Also, I've been said that trying this and that for only a limited period of time when one should hold the therapy for more than am month may not produce results. So, what comes next? Continuing corticosteroids together with NAC (dosage?) and pentoxifylline (dosage?) abandoning anticonvasants for now?
And the perhaps 1 month later coming back to Tegretol, Keppra or any other med for the nerve/brain?

 

This is from post # 133 in this thread.

Well I now retract that statement! I have been so busy I missed a post in the Autifony thread that ATEOS put in there with three links, that pretty much "unravel and expose" the workings of the relevant Kv3's. Here it is:
https://www.tinnitustalk.com/threads/autifony-therapeutics-phase-ii-study-for-aut00063-for-the-treatment-of-hearing-loss-and-tinnitus.6516/page-25#post-84411
Autifony ~ Post # 746

I suggest looking at these links for any Kv 'fundi' who missed them, as they are great!
Here is one extract and I will highlight in bold the main part, to me, then make a comment in relation to Keppra at the end...

[0002]The Kv3 voltage-gated potassium channel family includes four members, Kv3.1, Kv3.2, Kv3.3, and Kv3.4. Genes for each of these subtypes can generate multiple isoforms by alternative splicing, producing versions with different C-terminal domains. Thirteen isoforms have been identified in mammals to date, but the currents expressed by these variants appear similar (Rudy and McBain, 2001, Trends in Neurosciences 24, 517-526). Kv3 channels are activated by depolarisation of the plasma membrane to voltages more positive than -20 mV; furthermore, the channels deactivate rapidly upon repolarisation of the membrane. These biophysical properties ensure that the channels open towards the peak of the depolarising phase of the neuronal action potential to initiate repolarisation. Rapid termination of the action potential mediated by Kv3 channels allows the neuron to recover more quickly to reach sub-threshold membrane potentials from which further action potentials can be triggered. As a result, the presence of Kv3 channels in certain neurons contributes to their ability to fire at high frequencies (Rudy and McBain, 2001, Trends in Neurosci. 24, 517-526). Kv3.1-3 subtypes are predominant in the CNS, whereas Kv3.4 channels are found predominantly in skeletal muscle and sympathetic neurons (Weiser et al., 1994, J. Neurosci. 14, 949-972). Kv3.1-3 channel subtypes are differentially expressed by sub-classes of interneurons in cortical and hippocampal brain areas (e.g. Chow et al., 1999, J. Neurosci. 19, 9332-9345; Martina et al., 1998, J. Neurosci. 18, 8111-8125; McDonald and Mascagni, 2006, Neurosci. 138, 537-547, Chang et al., 2007, J. Comp. Neurol. 502, 953-972), in the thalamus (e.g. Kasten et al., 2007, J. Physiol. 584, 565-582), cerebellum (e.g. Sacco et al., 2006, Mol. Cell. Neurosci. 33, 170-179), and auditory brain stem nuclei (Li et al., 2001, J. Comp. Neurol. 437, 196-218).

Basically, what this is saying (and the second link in @attheedgeofscience's post is in even more plain English) is that the relevant Kv3's are Kv3.1-3 (as Kv.3.4 relates to skeletal muscle and sympathetic neurons) and that an "activator" of these Kv3's will make depolarization and repolarization work fast and well (neuronal firing and return to baseline)...and that allowing the neuron to fire at high frequencies...means the thing becomes "unstuck"!!!
Thus in my old analogy, the doors are not welded shut any more and they can open and close normally to allow K+ ions to flow back and forth through the membrane like they should. When they don't, and the gates get locked into a closed position, that is what perpetuates the aberrant condition = tinnitus.....My explanation anyhow!

So what does this have to do with Keppra, as the source for the above is Autifony?

Well if Keppra is a Kv3 drug then it could be closer to AUT00063 than I thought. The big question is, that I am still not sure the darn stuff is a Kv3 drug...though seemingly the latest data seems to imply so. At least to some degree. Part of me thinks that the classic:

... "unknown" part may be the reason the researchers are only now figuring out the Kv3 aspects, though the drug has been around long enough for that to have been looked at properly...I would think?! So it is still somewhat of a black box to me.

In conclusion though, if LEV/Keppra really does do a number on activating the Kv3's and not inhibiting them, then it could act a lot like AUT00063...but which way it is working the gates is still open to question...in my well out of my league brain!

I guess if the stuff works on tinniuts, with a low side effect profile, then that is the thing that really matters!

best, Zimichael

 

Corticosteroids 10 days after trauma perhaps is too late... sorry for that.
Corticosteroids work best if you got them almost immediately in the first 24hours.
Also NAC works the same.
Try NAC maybe help you with better temporary thresholds so you will have less spikes and less T buildup during day from everyday noises. I think NAC will make stability to you hearing a bit less H and reactive T.
Strugeron is not for your case will give you more problems.

 

So is there any particular reason why you - amongst other posts - have recommended this approach for a chronic sufferer?

 

Yes because it work for me and iam chronic.
Example in case of TMJ inflammation / inflammation from 1000+1 reasons / nmda antagonism etc.
Steroids have activity in almost all human genes and empirically shown that work in some cases.
Also in acute worsening T acute developing T is gold standard.A louder T maybe a spike but maybe
is a permanent worsening in that case i shoot corticosteroids.
For me methyprednisolone has 3 good effects to T (i have almost 0db T no H in silent room in day) and 1 bad (i develop loud T in bedtime with resolves after some hours of wake up when i equalize middle ear pressure.)
So for me corticosteroids work the day nut not in sleep.
Now iam trying pure glucocorticoid dexamethasone instead methylprednisolone to see in solve the bedtime/middle ear pressure-tinnitus problem.


I have tried now 100mg carbamazepine (tegretol) and it is effective.
It resolved some very mild very HF T (like electric current) i had before 1 hour.
Also i feel more relaxed maybe mood reaction to T improved.
More testing needing for tegretol... my main problem is that it is in lists of ototoxic drugs.

 

Ok, my doctor also prescribed me tegretol 2x200 daily, along with amitriptyline 1x10 and corticosteroid betamesthasone weekly injections. I asked him about Keppra, but he said it doesn't help in trimental neuralgia cases (or vascular compression), it is something different. Of course, mine is treated as a vascular compression case, so this is the treatment for. Not a cochlear damage one. I wish they could find where the problem is.
Perhaps if tegretol also fails after Neurontin, it may indicate cochlear damage and then, only God knows what my next step will be...

 

I know taht keppra is unuseful in NVC, infact i'm using it for other reasons.
Already 400mg of tegretol at start ??? is very high!
I'm not kidding! Where are you from?

 

I am from Greece. The exact prescription is here: http://www.galinos.gr/web/drugs/main/packages/4884#content

Judging by this http://www.galinos.gr/web/drugs/main/drugs/tegretol it doesn't come in smaller dosages. My doc said it is tegretol accompanied by an s and another letter or something. I will know more tomorrow after I buy it.

 

Sorry if this was answered already, but do we know for certain if keppra is a kv3 activator?

 

Geia sou file skoupidis ..eida oti eisai api ellada basanizomai Kai ego 5 mines meta apo akoustiko trauma..that xairomoun na talegam . Tilefonikos 6974708482 Dimitri's....h steile SMS to call u.

 

Why don't you email Dr.Large and ask him?

 

I'm at 14 days of experiment started 500mg morning + 500mg evening + 1mg Rivotril before bed (due to washout). Now by 3 days on 1500mg and i hear a definitive improvement of Hiperacusys but i'm skeptical about the effectiveness on tinnitus. Many fluctuations, yesterday very low, today loud at left.... i don't know if this drug could be an effective alternative of management of tinnitus.
Remains unexplained the great improvement of hyperacusis. Not even my neurologist imagined, so I can not say whether or not this event is related to the use of the drug.

 

@Viking

Any side effects?

 

Side effects of Keppra (in my experience...remember that we are not all equal):
first 5 days:insomnia, anxiety slight, irritability, poor want to talk with other persons (depression),stomach burn (solved with pantoprazole 40mg at morning for 1 week).This was for the first 3 max 5 days. I did not notice any other side effects by increasing the dose. Now i haven't side effects. Only tired after 3rd dose at evening, but it could be a good aspect because i need to sleep.
Best wishes

 

@Viking
I hope this one provides some relief for you.
Maybe it just takes more time!
In the past, did you have any variation in your t, from being very low to being loud?

 

Agree: as also told my neurologist, i need more time to draw conclusions. Currently I have more "good days", I do not know if it is a placebo. My tinnitus is "old" (cronic), so maybe other people in the future, not chronic, may get more benefits. I hope
Thank you

 

Isn't mvc a problem you also have or it belongs to the past after your mvd surgery? Do you know exactly what caused your T?

Also: How long have you been on Keppra? And what medication have you been talking before Keppra?

 

Bought it today. It is the Tegretol CR 200mg. Will have to start decreasing the Neurontin, according to my neurologist in 7 days I can go on Tegretol. But first I want to consult my ENT who gave me the Neurontin...

 

My friend skoupidis i am also from greece!!with acoustic trauma and tinnitus !!if u can please contact!6974708482. I saw many doctors. !!!!everybody dont know nothing!!!i am trying alone,,

 

The reason that keep me into medications after surgery is the damage by improper use of hearing aids. Before surgery (2006 2007 half 2008) i have tryed all the off label medications available in the world. SSRI and benzos was included. The only relevant for their efficacy was Tegretol for 2 month at 200mgxday and Flexiban (muscle skeletal nerve relaxant). The list is too long. Only trobalt and keppra don't was used. After surgery i used only melatonin and very rare poor drops of rivotril. By June 2013 after using of hearing aids and maskers in order to delete the last tinnitus....all went worse and now i'm at the hell.

 

So, for 5 years you where ok after surgery? Did you do another vascular compression examination? From what you say, you seem to be having a different problem now, originating from acoustic trauma due to hearing aids. While before surgery and since it worked adequately, you seemed to have been suffering from mvc.

 

Yes, after surgery the tinnitus on right side was solved and on the left side big improvement. ENT(faudly sellers) after many years advice me about hearing aids (for the relief of the remaining tinnitus on the left side)...i buy it...after 1 month... they started to worse it. ENT sayd that was impossible and i was anxious and depressed,,,then remove hearing aids after 3 month and sell me the useless TRT theraphy who have made others damage.
I add: even 1 year after surgery i have made MRI scans for check the situation. Anatomically is all ok. ABR return in the normal function. After hearing aids ABR exams is altered. Now i have only anti seizure med like a chance and HIFU surgery if i will diagnosed for TCD.
best wishes

 

One would argue you should leave it to that. But knowing big improvement made you crave for total improvement. Understandable...

Why would you want to use hearing aids? They wouldn't cure anything, you would have to wear them all the time, as if your T was quite bothersome. Sorry for my persistence, but maybe 5 years after surgery your T got worse again by other means which led you to reexamine your options.

Again, you did your scans and ABR 1 year after surgery. But you didn't do them 4 years after and before hearing aids. Right? What I mean to say is perhaps your T got worse BEFORE using hearing aids due to some other cause.
Don't get me wrong, I only try to help. Perhaps there is something that aggrevated your T and it is not the hearing aids?

My best hopes go to you my friend and to the end of your suffering. Our suffering!

 

I have buy hearing aids because ENT (italians idiots with white coats) give me this "good advice" because if someone talk with low voice in my ears... i have difficult to heard them....then.... BUY HEARING AIDS! IMPROVE HEARING! MASK BETTER THE REMAINING TINNITUS! Fraud!

not not! I had made mri scans and abr 6 month after surgery. Then after 1 year...then after 2 year...I always checked. I have no other problems. Even Jeanmonod, along with De Ridder and many others, believe that I had a brain overstimulation after hearing aids. has become chronic (loop) with continued use. Too-stimulated = too much exacerbation.
Hoping.... i really living the hell!

last mri scans 12/02/2014 was clear and now is in the Jeanmonod's hands