Levetiracetam (Keppra) Worked for My Hyperacusis

#571
Ummmmm, hello! . . . . Just read the damn thread, then you will know that I went off of Keppra due to bad side effects. NOT that I was having trouble getting OFF Keppra. And I DID taper, contrary to what is being implied. WTH!!! I was on 125mg once a day for two weeks. NOBODY takes that low of a dose. Judas priest. Most people consider 250-500 mg/day a taper. I take a lot of vitamins and supplements too, so it's not a simple "pills" thing.

Keppra Klearance may not be a joke, that is mainly what @Zimichael and I are saying. He did not have big deal side effects at 2000mg total/day (just got a bit goofy). He even tapered at a much higher dose than I did. But he and I BOTH had problems once we discontinued the drug. However, EVERYONE is different.

You @Danny Boy seem to be able to eat meds like scones at Buckingham Palace. Good for you. Lucky for you. Those who can't, may consider some possible fallout. Ultimately the only way to find out is to try it. And then report, as @Zimichael and I did. We felt reporting our experience with Keppra was the responsible thing to do.

It is also responsible to read the entire thread regarding my experience with Keppra before jumping to conclusions about my tapering, why I discontinued usage, etc. And one should just stay on the drug forever?!? With the side effects I was having, as I posted earlier on this thread, that was simply NOT an option!!!

I am not logging on much at all so this may be it for my total response on this aspect. However, @Zimichael suggested I respond one last time to clear up any confusion.
 
#572
@Danny Boy Sorry if you answered this already, but I was declined Keppra by my primary care doctor. She said that I'd have to see a neurologist if I wanted it. Is this what happened to you? I really don't want to wait until November since my headaches are so terrible. Though to be honest, I'm not sure if it's H or TMJ, since I'm not diagnosed with either but I'm pretty sure I have atleast one >.<
 
#573
Brittany said:
@Danny Boy Sorry if you answered this already, but I was declined Keppra by my primary care doctor. She said that I'd have to see a neurologist if I wanted it. Is this what happened to you? I really don't want to wait until November since my headaches are so terrible. Though to be honest, I'm not sure if it's H or TMJ, since I'm not diagnosed with either but I'm pretty sure I have atleast one >.<
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#574
Brittany said:
@Danny Boy Sorry if you answered this already, but I was declined Keppra by my primary care doctor. She said that I'd have to see a neurologist if I wanted it. Is this what happened to you? I really don't want to wait until November since my headaches are so terrible. Though to be honest, I'm not sure if it's H or TMJ, since I'm not diagnosed with either but I'm pretty sure I have atleast one >.<
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I got mine in Spain not through a doctor. Doctors simply don't care about our condition and because normal people will never comprehend the suffering we go through, they just think we are depressed over nothing. That's further from the truth of course. I would see a neurologist, but I don't know if they would be more willing, as I never been to one.
 
#575
Brittany said:
@Danny Boy Sorry if you answered this already, but I was declined Keppra by my primary care doctor. She said that I'd have to see a neurologist if I wanted it. Is this what happened to you? I really don't want to wait until November since my headaches are so terrible. Though to be honest, I'm not sure if it's H or TMJ, since I'm not diagnosed with either but I'm pretty sure I have atleast one >.<
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You need a Neuro for sure and yes, TMJD can cause H. I have both and more. ..:(
 
#576
Danny Boy said:
I got mine in Spain not through a doctor. Doctors simply don't care about our condition and because normal people will never comprehend the suffering we go through, they just think we are depressed over nothing. That's further from the truth of course. I would see a neurologist, but I don't know if they would be more willing, as I never been to one.
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Like you bought it in Spain or ordered it online from a seller located in Spain? And yeah, I'm beginning to notice that as well. I hope my neurologist doesn't bullshit me. Just give me the damn drug and let me be on my way >.>
 
#577
skoupidis said:
Good for you. Personally speaking, I tried it for almost 3 months, I have to say it may have helped a bit (not positive about it though) but it does bring down your libido a lot after long time use...
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I had the same side-effect. I didn't mind personally.
 
#578
Danny Boy said:
I had the same side-effect. I didn't mind personally.
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Oh it's VERY important. Now there may be a way around it, my doc suggested something but as I wasn't sure that keppra helped my H and T I decided to quit...
If I had discovered positively that keppra really helps I would go for it all the way and take some other medicine to counter the sideffects it causes. There is a way around such sideffects but I didn't go there although my doc insisted. Unφortunatelly I am very uncertain of how keppra helped me, if at all.

One reason I decided to stop it was to see if I get worse without it. That would probably mean it did offer some relief.
Now that I mention it, I must point out that lately I am out of good days...
 
#579
skoupidis said:
Oh it's VERY important. Now there may be a way around it, my doc suggested something but as I wasn't sure that keppra helped my H and T I decided to quit...
If I had discovered positively that keppra really helps I would go for it all the way and take some other medicine to counter the sideffects it causes. There is a way around such sideffects but I didn't go there although my doc insisted. Unφortunatelly I am very uncertain of how keppra helped me, if at all.

One reason I decided to stop it was to see if I get worse without it. That would probably mean it did offer some relief.
Now that I mention it, I must point out that lately I am out of good days...
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Well, if you had epilepsy you'd have to handle these side-effect even if you didn't want to. I treat it like that.
 
#584
I just started another round of Keppra yesterday (500mg per day), and the only side effects I've noticed is fatigue and cotton mouth. It does make sleeping great for me. I'm going to go against my better judgment and provide you guys with some personal results, but know, I'm really not interested in anyone second guessing my results or accusing me of fabricating my experience:)

I no where near have the debilitating T and H as some of you, and mine is pretty easy to mask. I do have a high-pitched tone in my left ear that is a little more challenging to hide, but the low frequency hum that's driven me crazy for about 3 years can be masked. I have few other frequencies floating around in my head too, but the two I mentioned are the problem areas. I'm also a professional musician, so I don't have the option of keeping away from loud music, although I do my best to protect my ears. I have some H as well, primarily in my left ear, where that high-pitched tone will increase with certain sounds, like a car engine or baby scream. Keppra does a good job of eliminating the H, and it also lowers my low-frequency T to the point where I can barely perceive it. It's also "cleaned up" my hearing. I'm thinking it's due to fewer frequencies in the T soup I had going in my head, but it's like my hearing as been EQ'd. I don't think it does too much for my high-pitched, tonal T, but it's lowered it a little. I plan on doing one more month of Keppra, then will probably just wait for Autifony to hit the market (yes, I believe it'll pass the trials), or try out Brivaracetam once it's out. There's definitely something to potassium channel modulation, and I've experienced it first hand. I don't believe Keppra works the same as Aut, but whatever, it's still messing with potassium channels which has unlocked something in the brain in regards to T&H, and hearing clarity. Sorry, I don't mean to start an Aut conversation, but I'm convinced they're on the right track.
 
#585
Update on day 5. H is gone, but no change in high-frequency T. Low-frequency T improvement is spuratic. This stuff sure makes me tired! I'm sleeping great...almost too great. I also feel a little punch drunk for a few hours after taking it. Another potential side-effect, I was told, is aggression or anger, and that is so true! Yesterday I was ready to put my fist through a wall for no reason. At least I knew why I felt that way, and was able to control it. My doctor / father says all these side-effects should pass. I'll add that I upped my dosage to 1,000mg per day, which is likely why I'm now experiencing side-effects, versus the 500mg I was on before. All in all, I don't know that this does much for T overall, but it sure takes care of H. I can live with that for now until Aut comes out:)
 
#586
swc5150 said:
Update on day 5. H is gone, but no change in high-frequency T. Low-frequency T improvement is spuratic. This stuff sure makes me tired! I'm sleeping great...almost too great. I also feel a little punch drunk for a few hours after taking it. Another potential side-effect, I was told, is aggression or anger, and that is so true! Yesterday I was ready to put my fist through a wall for no reason. At least I knew why I felt that way, and was able to control it. My doctor / father says all these side-effects should pass. I'll add that I upped my dosage to 1,000mg per day, which is likely why I'm now experiencing side-effects, versus the 500mg I was on before. All in all, I don't know that this does much for T overall, but it sure takes care of H. I can live with that for now until Aut comes out:)
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I suggest you wait before you reach a positive conclusion. 5 days are really really small amount of time and it is very possibly your H had just a good day. When I was trying keppra I had similar observations, I also had T reduction and reactive T reduction in the first days. But they came back. In the end, after almost 3 months, I reached a conclusion that keppra had a questionable effect on my condition. If any that is. It surely did not get rid of my H.
 
#587
skoupidis said:
I suggest you wait before you reach a positive conclusion. 5 days are really really small amount of time and it is very possibly your H had just a good day. When I was trying keppra I had similar observations, I also had T reduction and reactive T reduction in the first days. But they came back. In the end, after almost 3 months, I reached a conclusion that keppra had a questionable effect on my condition. If any that is. It surely did not get rid of my H.
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This is my second round of Keppra, and it cleared up my H both times.
 
#588
I'll just keep reporting results as they come. I had a T spike around noon today, but now my T is abnormally quiet? Like awesomely quiet! The best it's been in 3 years actually. The last pill I took was around 9am.
 
#594
Good question. Oxcarbazepine a similar med made me very ill. have not tried trobalt or keppra. I thinking about it, yet it appears to have questionable side effects.
 
#597
However you read this thread, strong anecdotal evidence now exists for a few researchers with backing to start taking it seriously. Wonder if that will happen?
 
#598
PaulBe said:
However you read this thread, strong anecdotal evidence now exists for a few researchers with backing to start taking it seriously. Wonder if that will happen?
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That's exactly what Autifony is doing... afterall, Dr. Large invented Trobalt. I have zero doubt they know what they're doing, and the results will prove it. BTW, T today is 0.5/10:) I'm normally around a 4 to 5/10.
 
#599
It does seem that some pieces of the puzzle are falling into some sort of order with these classes of drug. Sometimes anecdotal research (trial and error) is where the floodgates can begin to open.
 

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