Levetiracetam (Keppra) Worked for My Hyperacusis

Discussion in 'Support' started by Danny Boy, Apr 1, 2015.

    1. 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.
       
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    2. Brittany
      Anime

      Brittany Member

      Location:
      Ohio
      Tinnitus Since:
      01/2015
      Cause of Tinnitus:
      Sinus Infection?
      @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 >.<
       
    3. dan
      Chatty

      dan Member Hall of Fame

      Location:
      Toronto, Canada
      Tinnitus Since:
      06/2011
      Cause of Tinnitus:
      Loud noise
      QUE VIVA ESPAÑA, INSTRUMENTAL
       
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    4. AUTHOR
      AUTHOR
      Danny Boy
      Cheerful

      Danny Boy Member Benefactor Hall of Fame

      Location:
      England
      Tinnitus Since:
      7/2014
      Cause of Tinnitus:
      Ear infection
      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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    5. You need a Neuro for sure and yes, TMJD can cause H. I have both and more. ..:(
       
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    6. Brittany
      Anime

      Brittany Member

      Location:
      Ohio
      Tinnitus Since:
      01/2015
      Cause of Tinnitus:
      Sinus Infection?
      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 >.>
       
    7. AUTHOR
      AUTHOR
      Danny Boy
      Cheerful

      Danny Boy Member Benefactor Hall of Fame

      Location:
      England
      Tinnitus Since:
      7/2014
      Cause of Tinnitus:
      Ear infection
      I had the same side-effect. I didn't mind personally.
       
    8. skoupidis

      skoupidis Member

      Tinnitus Since:
      09/2014
      Cause of Tinnitus:
      Acoustic trauma or mvc
      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...
       
    9. AUTHOR
      AUTHOR
      Danny Boy
      Cheerful

      Danny Boy Member Benefactor Hall of Fame

      Location:
      England
      Tinnitus Since:
      7/2014
      Cause of Tinnitus:
      Ear infection
      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.
       
    10. uae96
      Thinking

      uae96 Member

      Tinnitus Since:
      6/14/2015
      Cause of Tinnitus:
      Noise induced
      Does it require a prescription in UK? I asked about it and they'd give it wo prescription:0 @Danny Boy
       
    11. AUTHOR
      AUTHOR
      Danny Boy
      Cheerful

      Danny Boy Member Benefactor Hall of Fame

      Location:
      England
      Tinnitus Since:
      7/2014
      Cause of Tinnitus:
      Ear infection
      Well, I would say so. But honestly, I haven't tried asking.
       
    12. uae96
      Thinking

      uae96 Member

      Tinnitus Since:
      6/14/2015
      Cause of Tinnitus:
      Noise induced
      How did you get it then?
       
    13. AUTHOR
      AUTHOR
      Danny Boy
      Cheerful

      Danny Boy Member Benefactor Hall of Fame

      Location:
      England
      Tinnitus Since:
      7/2014
      Cause of Tinnitus:
      Ear infection
      Spain.
       
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    14. swc5150

      swc5150 Member

      Tinnitus Since:
      06/2012
      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.
       
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    15. swc5150

      swc5150 Member

      Tinnitus Since:
      06/2012
      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:)
       
    16. skoupidis

      skoupidis Member

      Tinnitus Since:
      09/2014
      Cause of Tinnitus:
      Acoustic trauma or mvc
      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.
       
    17. swc5150

      swc5150 Member

      Tinnitus Since:
      06/2012
      This is my second round of Keppra, and it cleared up my H both times.
       
    18. swc5150

      swc5150 Member

      Tinnitus Since:
      06/2012
      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.
       
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    19. valeri

      valeri Member Benefactor Hall of Fame

      Location:
      Australia
      Tinnitus Since:
      09/2011
      What do you mean by second round?

      First round didn't give permanent results?
       
    20. swc5150

      swc5150 Member

      Tinnitus Since:
      06/2012
      Nope, I was only on 500mg for a month. I don't expect permanent results on 1,000mg either. I just want to see how much of an improvement it makes, and if it would be worth staying on.
       
    21. valeri

      valeri Member Benefactor Hall of Fame

      Location:
      Australia
      Tinnitus Since:
      09/2011
      Sorry to bother you but why did you stop it after a month? How long ago was your first round?
       
    22. swc5150

      swc5150 Member

      Tinnitus Since:
      06/2012
      I only had a month's worth of the meds. If I find it works great after this round, I'll keep on it, otherwise I'll just wait it out for Aut.
       
    23. valeri

      valeri Member Benefactor Hall of Fame

      Location:
      Australia
      Tinnitus Since:
      09/2011
      @svintegrity

      Has keppra in any way made things worse for you regarding H and T?
       
    24. ruben ruiz

      ruben ruiz Member

      Location:
      Tucson, AZ
      Tinnitus Since:
      2012
      Cause of Tinnitus:
      I believe it was meds and stress
      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.
       
    25. valeri

      valeri Member Benefactor Hall of Fame

      Location:
      Australia
      Tinnitus Since:
      09/2011
      Worse for T/H or just in general?
       
    26. swc5150

      swc5150 Member

      Tinnitus Since:
      06/2012
      Nope, improvements in both, but more so in the H. I can now tolerate my 15mo old daughter's loud crying:) Prior, it was like being drilled through the head.
       
    27. PaulBe

      PaulBe Member Benefactor

      Location:
      Cairns
      Tinnitus Since:
      11/2013
      Cause of Tinnitus:
      Probably sound, though never proven
      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?
       
    28. swc5150

      swc5150 Member

      Tinnitus Since:
      06/2012
      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.
       
    29. PaulBe

      PaulBe Member Benefactor

      Location:
      Cairns
      Tinnitus Since:
      11/2013
      Cause of Tinnitus:
      Probably sound, though never proven
      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.
       
    30. dan
      Chatty

      dan Member Hall of Fame

      Location:
      Toronto, Canada
      Tinnitus Since:
      06/2011
      Cause of Tinnitus:
      Loud noise
      Wanna hear a good anecdote???? -Trobalt cured Danny boy lol.
       
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