Levetiracetam (Keppra) — Another Possible Potassium Channel Modulator?

Tinnitus? The medical community doesn't even give a shit
They tell you to go for an MRI and if there's no tumor they tell you there's no cure learn to live with it it's not going to kill and then kick you out of the clinic or better tell you to listen to Goddamn white noise for the rest of your life. Hell, like visual snow sufferers we can't even get a proper diagnosis, some ignorant doctors even believe it is an imagined condition if your scan came back clean you're alright without any problem.
The scientific community? There are a few of the scientists who are really working on it, but no funding! They're working tirelessly towards a functional and molecular understanding of this shit but they face constant shortage of research funding. T sufferers are abandoned by the world, betrayed by the world. Why? Because no one give a shit and no one think it's a real problem. What they know is you can eat, breathe, move, and they believe whatever your condition is it's mild and doesn't really matter. You tell doctors your sufferings they label you as "Depressed", "Anxiety Disorder" (in my opinion Anxiety is really an imagined medical condition marketed by big pharma) and put you on more addictive and ototoxic drugs.
Not to mention I got this sh.t from those Goddamn psychiatrists and psychiatric drugs. They were supposed to help me but I end up losing my health and my life. Those who are responsible will never need to pay for it, pay for all my sufferings. This damned world has no justice.
excellent post
 
But infact i don't know why people say that Keppra cause tinnitus. Never in "not common" - "rare" - "unknow" side effect...
I want to be clear with all because we are all friends. I'm testing only a drug...i'm not a "seller" of false hope. I SUFFER
Like me. I suffer, too.
@Viking
Do you take any other drugs against anxiety or depression?
 
Like me. I suffer, too.
@Viking
Do you take any other drugs against anxiety or depression?
I have stopped SSRI medication because i was a zombie. ENT grave me AD for tinnitus..... No reasons...
I have cutted my dose of clonazepam from 2,5 mg to 1 mg.
Advantages of Keppra: very safe drug. you can administer it to children who suffer from epilepsy and pregnant women without risk than other anti seizure. my neurologist, who has been following my passion and your experience with Trobalt, I suggested this anti seizure because of its activities on potassium channels hoping it can be relieved. the maximum recommended dose is 750x2. in epilepsy will get to 3000mg safely. no risk to the eyes, kidneys, bladder etc. antidepressants were killing me and were not curative and perhaps also aggravated my tinnitus.

Disadvantages of Keppra: we are not sure that it is healing ... my hope is just to improve my condition and if you too can improve would be good for everyone. side effects on me with 500x2: fatigue, anxiety passing. I hope to be helpful. we are all in the saje situation!
 
The good news is that instead the trobalt, this drug, if is effective, don't need dangerous dosages. I'm on 500 morning + 500 evening. Is important to gave 8 max 12 hour between first and second pill. Max dosage i will go on next week is 1500mg. 750 morning 750 dinner. I'm no hoping for a CURE. I want to be clare. I am only trying to bring back tinnitus at previous level before hearing aids worsenend
Best wishes
Hey viking, very interested to see how this works out for you. Also a bit scared by your comment about hearing aids worsening your T. I literally have had hearing aids fitted this monday with WNG's for my T. Could you perhaps share your experience.
I've had T since 2010, which worsened in 2012, and has recently gone up another notch. My T is most likely the result of noise damage. Its a bilateral tonal T at 14,1 kHz. I have an MRI scheduled in januari. Really looking at Autifony, Otonomy, and Auris to get a break from this, as this is another potassium route I'm rooting for you to get some results.
 
Hey viking, very interested to see how this works out for you. Also a bit scared by your comment about hearing aids worsening your T. I literally have had hearing aids fitted this monday with WNG's for my T. Could you perhaps share your experience.
I've had T since 2010, which worsened in 2012, and has recently gone up another notch. My T is most likely the result of noise damage. Its a bilateral tonal T at 14,1 kHz. I have an MRI scheduled in januari. Really looking at Autifony, Otonomy, and Auris to get a break from this, as this is another potassium route I'm rooting for you to get some results.
I really worsened with hearing aids for earing and after masking with white noise and after with narrow band noise. i think it is only a business. I post my audiometric test you can make a confront. If you "hear" that tinnitus is go to spyking....REMOVE SUDDEN THE DAMN PROTHESYS! There is no way to come back. Then the ENT will say that you are depressed ect ect... gave you benzos ...antidepressants... ruined your life. If you haven't a real problem with hearing remove it! This is my audiogram...only recently 2 ENT sayd that i do not need hearing aids and that the prothesys can only create others damage! audiometrico.jpg

THINK THIS: if we, suffering of tinnitus, must avoid headphones and loud sound....what is the criteria to apply 2 expensive hardware who amplify all sound around us?!??!?
 
Hey viking, very interested to see how this works out for you. Also a bit scared by your comment about hearing aids worsening your T. I literally have had hearing aids fitted this monday with WNG's for my T. Could you perhaps share your experience.
I've had T since 2010, which worsened in 2012, and has recently gone up another notch. My T is most likely the result of noise damage. Its a bilateral tonal T at 14,1 kHz. I have an MRI scheduled in januari. Really looking at Autifony, Otonomy, and Auris to get a break from this, as this is another potassium route I'm rooting for you to get some results.
Jeff. If you have no hearing loss in the low frequencies ( < 6 kHz), you need no hearing aid.
A hearing aid makes sense if your T is in the lower frequencies and you have hearing loss there. Because then you get more input from outside covering your T. I have T around 15 kHz and tried hearing aids and WNGs. Both did not help. The only thing that helps is cricket sounds, birds or water sounds.
At least this is my opinion.
Yes, we all hope for the magic pill.
 
I see your point, I have only really been on mirtazapine, but quit that some time ago as it wasnt doing much of anything. Here is my audiogram, i dont really need hearing aids either but I have to say it was easier for me at my last meeting to hear what people were saying.

I have tried some benzo's to help sleep but not really for prolonged periods, few days in a row at most as they didn't work anyway. They are expensive though 1000 euro a piece, luckily I will get 75% covered but still.


Audiogram.png
 
please post links to studies linking keppra to helping tinnitus
this is what we need to show our doctors to get it off-label,
unless we can take the mood stabiliser route...i don't have a neuro, just my gp

question...auitfony drug was supposed to be first in class
ie the first drug to do a particular thing
if keppra already existed, how come only you spotted it.
how did you find it anyway?
 
Jeff. If you have no hearing loss in the low frequencies ( < 6 kHz), you need no hearing aid.
A hearing aid makes sense if your T is in the lower frequencies and you have hearing loss there. Because then you get more input from outside covering your T. I have T around 15 kHz and tried hearing aids and WNGs. Both did not help. The only thing that helps is cricket sounds, birds or water sounds.
At least this is my opinion.
Yes, we all hope for the magic pill.

Yes hope indeed LOL.
From your 6khz statement it would seem that i do need hearing aids looking at my audiogram, but the loss is still very small according to my ENT.
Anyway ive turned the WNG off on them and it does seem my T is a little more persistent although they say that effect could last for a week or 2 before it really starts kicking in. Im also scheduled for CBT therapy alongside, although i do not really have high hopes for that it is the only route to some treatment here in Holland for us.
 
Yes hope indeed LOL.
From your 6khz statement it would seem that i do need hearing aids looking at my audiogram, but the loss is still very small according to my ENT.
Anyway ive turned the WNG off on them and it does seem my T is a little more persistent although they say that effect could last for a week or 2 before it really starts kicking in. Im also scheduled for CBT therapy alongside, although i do not really have high hopes for that it is the only route to some treatment here in Holland for us.
I just mean that most auditory input from outside is between 0.5 and 6 kHz. Maybe 95%. Water sounds, crickets, birds are higher. The hearing aid does not take your T away, but it should supply more input from outside. My T is around 15 kHz, freaking high and loud. But my hearing up to 6 kHz is perfect. So my last audiologist says, I don't need hearing aids. But we tried programmable White Noise Generators with white, pink and brown noise. They are also used in TRT. So they can help since they give you permanent noise in the background. Unfortunately I need to mask my T oftentimes, otherwise it drives me crazy. And for this, I need other sounds which are very high-pitched. So give it a try. What the one does not help, could help another one.
 
@JeffDamsko
Just saw your audiogram. If your T would be at 4 KHz, hearing aids would be perfect.
If you think they help you understanding people better, they could also help.
But only for hearing, probably not for your T since in another range.
The white noise, as I said, could help or not. TRT takes 12 to 18 months and you listen to the noise 8 hours or maybe permanent.
The problem for me was and is that I can clearly hear my T through anything. And this not pleasent. Anxiety and depression is still there. So I needed other sounds. But everyone is different. Maybe your T is not so loud, then it is a different story.
 
I tried one of those T matching sound generators and I can't hear anything above 11K Hz is that normal?
You must turn the volume up.
It's normal age-related hearing loss in the high frequencies.
Search google for this and you will find some diagrams.
I even played my T from my mobile to some people above age of 50 and they could not hear it at all.
My kids could hear it loud and clear.
 
No I don't think it is normal unless your are 80. I'm 40 and don't hear anything above 10khz and I have serious hearing loss and damage done from ototoxic drugs. It's weird I can crank up 10khz pure tone to max volume and can not hear it but it still hurts my ears afterwords. I don't get that.
I tried one of those T matching sound generators and I can't hear anything above 11K Hz is that normal? Here's the link to the program.

http://www.audionotch.com/app/tune/
 
You must turn the volume up.
It's normal age-related hearing loss in the high frequencies.
Search google for this and you will find some diagrams.
I even played my T from my mobile to some people above age of 50 and they could not hear it at all.
My kids could hear it loud and clear.

This Shit is crazy ...so if that's the case and your T is at a very high frequency could age then diminish T due to normal hearing loss?
 
No I don't think it is normal unless your are 80. I'm 40 and don't hear anything above 10khz and I have serious hearing loss and damage done from ototoxic drugs. It's weird I can crank up 10khz pure tone to max volume and can not hear it but it still hurts my ears after words. I don't get that.
Maybe I have 80 year old hearing but i'm 53....I went back and turn up volume to max at 11K and I can hear faintly ....mine is definitely lower ....that's a nasty pitch
 
Maybe I have 80 year old hearing but i'm 53....I went back and turn up volume to max at 11K and I can hear faintly ....mine is definitely lower ....that's a nasty pitch
Well maybe that is the pitch of your T? and it is blending in...or it's somewhere right around that mark.
 
No I don't think it is normal unless your are 80. I'm 40 and don't hear anything above 10khz and I have serious hearing loss and damage done from ototoxic drugs. It's weird I can crank up 10khz pure tone to max volume and can not hear it but it still hurts my ears afterwords. I don't get that.
Telis, you are right. If you have protected your hearing, you have no loss.
But in my teens and twenties, I spent many weekends in clubs.
Also had a very loud motorbike. So I did not do anything good for my hearing.
The sad thing is, I never ever had any problem with my ears. No fleeting T, nothing after concert, never.
Now I have it really bad.
 
Maybe I have 80 year old hearing but i'm 53....I went back and turn up volume to max at 11K and I can hear faintly ....mine is definitely lower ....that's a nasty pitch
Yes, 15 kHz T is nasty when it is loud.
But I would not say that lower pitch is much easier to handle.
I don't know.
But we go off-topic. The thread is about Keppra.
 
Telis, you are right. If you have protected your hearing, you have no loss.
But in my teens and twenties, I spent many weekends in clubs.
Also had a very loud motorbike. So I did not do anything good for my hearing.
The sad thing is, I never ever had any problem with my ears. No fleeting T, nothing after concert, never.
Now I have it really bad.
Have you ever taken medications in
your life? I'm under the impression that somehow if you have been medication free (or close to) tinnitus does not happen, even with hearing loss. I believe this is the reason we have so much T in 1st world nations, (our access to medications)Not noise...poisons in our systems. I know lots of people with hearing loss and no T that have never really taken meds.

I have a friend that plays loud music every day in his studio, his hearing is bad (although no T)....And I'm talking concert levels every day for hours. but is one of those guys that will not take a pill if his life depended on it.
 
Have you ever taken medications in
your life? I'm under the impression that somehow if you have been medication free (or close to) tinnitus does not happen, even with hearing loss. I believe this is the reason we have so much T in 1st world nations, (our access to medications)Not noise...poisons in our systems. I know lots of people with hearing loss and no T that have never really taken meds.

I have a friend that plays loud music every day in his studio, his hearing is bad (although no T) but is one of those guys that will not take a pill if his life depended on it.
Only Aspirin and seldom antibiotics. Was my whole life more or less drug-free. Also no alcohol, no cigarettes, no drugs. Never.

My T was caused by anxiety. It was like being in a fight or flight mode, burnout situation. Did not know what was wrong with me. Anxiety started and T like crazy in my head. If someone would have calmed me down before T onset, it would have never happened.

But who to blame? You blame your doctor, I myself. Does it help? No. :-(
 
Please stay on topic all. Keppra.
 
Have you ever taken medications in
your life? I'm under the impression that somehow if you have been medication free (or close to) tinnitus does not happen, even with hearing loss. I believe this is the reason we have so much T in 1st world nations, (our access to medications)Not noise...poisons in our systems. I know lots of people with hearing loss and no T that have never really taken meds.

I have a friend that plays loud music every day in his studio, his hearing is bad (although no T)....And I'm talking concert levels every day for hours. but is one of those guys that will not take a pill if his life depended on it.[/QUO

Interesting I've never taken any pills other then vitamins only thing I've taken over last tens years is omeprezol for acid reflex ...I look up side effects and it lists T as one of them unreal...WTF
 
I see your point, I have only really been on mirtazapine, but quit that some time ago as it wasnt doing much of anything. Here is my audiogram, i dont really need hearing aids either but I have to say it was easier for me at my last meeting to hear what people were saying.

I have tried some benzo's to help sleep but not really for prolonged periods, few days in a row at most as they didn't work anyway. They are expensive though 1000 euro a piece, luckily I will get 75% covered but still.


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I'm not a doctor, but with your audiogram is ridiculois to prescribe hearing aids. You are fine! My worsening happened in july 2013 after 7 years of quiet life with tinnitus: 15 day after their use, when i was closing the car with the alarm i hear a loud tinnitus in the right ear. It disappear afyer a few of second. At home the loud producted by plates on table gave me other tibnitus but i think "i must fight and habituate my brain to this new condition"....after 1 month during the night of 13 july i waked up with an biggest tinnitus never heard in my life. I was scared. In the google cronology i see that i search for the habituation to hearing aids...and found on mytinnitus.de another user with the same worsening. He stop sudden and remove prothesys...i in good bless continue to use it...november 2013...tinnitus is out of control and i developed hiperacusys....ABSURD! I went to the ENT who gave me hearing aids and he said that i was too anxious and depressed...oh genius...i was fine and spend in good bless only 4000€ to have a worsening!! I was scared! In 7 years of tinnitus i never have experienced a tinnitus of 9000hz 120db...then start my "new odissey" with anti depressant and tinnitus maskers... another tragic worsen...see My Story... i don't want to make me over long...but in my opinion and experience...with your audiogram...i would take the prothesys and put them in to the WC or under my motorcycle! I hope that some one else can help you but talking about tinnitus...hearing aids and maskers wearable are FRAUD!
 

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