Levetiracetam (Keppra) Worked for My Hyperacusis

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

    1. amandine

      amandine Member

      Tinnitus Since:
      july 2014
      Until you receive a better answer I can tell you that Danny Boy had beneficial effects with Keppra.
       
    2. Aussie Lea
      Dramaqueen

      Aussie Lea Member Benefactor

      Location:
      Melbourne Yarra Valley
      Tinnitus Since:
      09/2013
      I looked up and you won't find anything about levetiracetam and tinnitus in the scientific publications. Recommending people take this drug or worse yet a combination of two possibly quite dangerous drugs (retigabine and levetiracetam, the former being even more dangerous) seems a little irresponsible to me. Caution should be advised before going down this path. Just in case I'm going to ask my neurologist I'm seeing for another condition if I could try these (I don't think they are available in Australia) but I would never try them without my doctor's supervision. Desperate times call for desperate measures but putting your health at further risk is not my cup of tea unless no other option is available.
       
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    3. AUTHOR
      AUTHOR
      Danny Boy
      Cheerful

      Danny Boy Member Benefactor Hall of Fame

      Location:
      England
      Tinnitus Since:
      7/2014
      Cause of Tinnitus:
      Ear infection
      Keppra dangerous? Really? They give it to children, dogs and babies.

      In-fact there is this-

      Levetiracetam in autistic children: an open-label study.
      Rugino TA1, Samsock TC.
      Author information

      Abstract
      The objectives of this study were to determine whether autistic children taking levetiracetam (1) showed improvement in the areas of aggression, impulsivity, hyperkinesis, and mood instability, and (2) showed a nootropic response. Ten white autistic boys ranging from 4 to 10 years were compared pretreatment and while taking levetiracetam for an average of 4.1 weeks. Inattention, hyperkinesis, and impulsivity were evaluated using the Achenbach Attention Problems scale, Conners DSM-IV Total scale, and the Conners Attention-Deficit Hyperactivity Disorder Index scale, all of which showed statistically significant improvements. Mood instability was measured with the Conners Global Index (CGI) Emotional Lability and CGI Total scales, both of which showed statistically significant improvements. Aggressive behavior, as measured with the Achenbach Aggression scale, showed statistically significant improvement only for subjects who were not recently weaned from medications that reduce aggression (e.g., risperidone, carbamazepine, desipramine). Levetiracetam may reduce hyperactivity, impulsivity, mood instability, and aggression in autistic children with these problems. No nootropic effect was observed.

      http://www.ncbi.nlm.nih.gov/pubmed/12177568

      So remind me, how is keppra so dangerous? Antidepressants are more dangerous than keppra.
       
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    4. Joan A.
      No Mood

      Joan A. Member

      Tinnitus Since:
      2000/ spike 2006/ massive 2009
      Cause of Tinnitus:
      unknow
      Full agree
       
    5. Zimichael

      Zimichael Member Benefactor

      Location:
      N. California
      Tinnitus Since:
      (1956) > 1980 > 2006 > 2012 > (2015)
      Cause of Tinnitus:
      Ac. Trauma & Ac.Trauma + Meds.
      Jesus Danny... You can have as many opinions as you like about all these meds you take and try, and people can make up their own minds for sure...BUT please get your facts straight on this one!

      Conclusion on all that, to me OK, is that Keppra is not a Kv drug of any significance.

      https://www.tinnitustalk.com/thread...d-for-my-hyperacusis.8946/page-17#post-128949

      I went into some pretty exhaustive in depth work on all that and you have all the references to back-track on if you dig into this thread. Keppra can be a fucking shit-faced, heavy duty, and dangerous med for some folks and you still promote it like candy. It is not, and should be treated with great care and caution!!!

      Zimichael
       
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    6. AUTHOR
      AUTHOR
      Danny Boy
      Cheerful

      Danny Boy Member Benefactor Hall of Fame

      Location:
      England
      Tinnitus Since:
      7/2014
      Cause of Tinnitus:
      Ear infection

      All I can add is, see a neurologist they are experts in their fields and if you do take keppra do so with caution and clear advice from your prescriber.
       
    7. Aussie Lea
      Dramaqueen

      Aussie Lea Member Benefactor

      Location:
      Melbourne Yarra Valley
      Tinnitus Since:
      09/2013
      I took the below from epilepsy.com

      Some side effects that have been reported include:
      • sleepiness
      • loss of strength and energy
      • dizziness
      • anxiety
      • nervousness
      • irritability
      • depression
      • other mood changes
      • decreased ability to cope with daily life events
      • depression
      • thoughts of suicide
      • severe anxiety, agitation, or confused thought

      On July 10, 2008, an advisory panel was convened by the Food and Drug Administration (FDA) to review data that the FDA had previously collected from drug studies showing an association between many of the antiepileptic drugs (AEDs) and suicidal ideation and behavior, which together are called suicidality. According to the FDA’s Alert, among the patients with epilepsy in these drug studies, 1 out of 1000 people taking the placebo (inactive substance) showed suicidality compared to approximately 3.5 out of 1000 people who took an AED.




      Don't you think those deserve mentioning?
      Suicide risk increasing from 1 out of 1000 (placebo) to 3.5 out of 1000 (keppra). I consider that significant.

      And common side effects include anxiety, loss of strength/energy, dizziness, nervousness, depression, other mood changes. What about that!?? Do you really think tinnitus sufferers need those common side effects???

      It would be a different matter (side effects likely being more acceptable) if this drug had been evaluated in any way for hyperacusis but it hasn't.

      You know, Danny, and I say this with only good intentions, you have appeared more or less a pharmaceutical sales person here in the discussions, for both trobalt and keppra. I think others may agree with me...?

      This is better!!

      Thank you!
       
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    8. amandine

      amandine Member

      Tinnitus Since:
      july 2014
      And as you know you could not get to see a neurologist in the UK and probably same situation in many other countries. You could not get anything prescribed for you and you bought it from another country without any prescription or medical supervision or assistance. This was because you had no choice and you felt you had to go your way with drugs as there was no other choice on offer to you. Like for many of us - no other choice. That is why the banner on top of this thread is there to protect TT, understandably, but most have to get these drugs from alternative sources and have no medical assistance.
      I believe that all of us know that these drugs are not candy but then candy will not help with T will it so that is why people are turning to drugs dangerous or not - living with very intrusive T is highly dangerous too - mentally and physically!
      Danny is by the way not out of the maze yet but is still forced to take Trobalt to keep his T down to tolerable levels.....i doubt he wants to take this drug and would far prefer to eat a bag of liquorice or other candy.
      Danny is just playing the game by posting that - he may very well believe that a doctor etc should be consulted at all times but the reality, that we all know, is far different from the real experience - for those who can get it from a doctor and be given supervision whilst taking the drug - well lucky you! For those who cant get medical supervision then what else is their choice if they want or need drugs to try to reduce their life destroying T? Benzos here in france are handed out like candy and are extremely dangerous if taken to excess or long long term.....but docs here give them out as tho a child can take them safely......with no medical supervision whilst on them and yes just go back to doc and ask for another prescription and yes given more with no discussion! So much for the help of medical doctors - just a joke which they get paid for - incredible!
       
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    9. Zimichael

      Zimichael Member Benefactor

      Location:
      N. California
      Tinnitus Since:
      (1956) > 1980 > 2006 > 2012 > (2015)
      Cause of Tinnitus:
      Ac. Trauma & Ac.Trauma + Meds.
      Good additional perspective @amandine ... Indeed we have hurdles and rocks of all sorts to overcome and asses. (Carefully, when it comes to AED's.) Ultimately, each to their own and what risks are acceptable.

      Best, Zimichael
       
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    10. Christian78
      Alone

      Christian78 Member

      Location:
      Gothenburg
      Tinnitus Since:
      (Sep 2013)
      Cause of Tinnitus:
      progressive tinnitus, time of expiring in next 3-6 months
      You should have added that people should go to tinnitus experts and ask for help and ask for those drugs. Because there are no tinnitus experts and there are no medicine for tinnitus. He in Croatia doctors ask me for their patients what to recommend because official there is no help. Just get use to T or drop dead.
       
    11. japongus

      japongus Member

      Tinnitus Since:
      1998
      Maybe Danny Boy had a myoclonus of some sort that affected his ear through an afferent nerve


      European Journal of Paediatric Neurology Year:2009
      Month:
      Day:
      Volume:13
      Issue:supp-S1
      First page:0
      Last page:0

      P196 Early onset palatal myoclonus with objective tinnitus
      and ear click responsive to Levetiracetam

      A.D. Dinopoulos1 *, L.P. Prezas2, P.M. Paragoudakis2. 13rd
      Pediatric Clinic “Attiko” University Hospital; 22nd ENT Department
      “Attiko” University Hospital, Greece
      Objective: Palatal myoclonus or palatal tremor appears to
      be the most common cause of objective tinnitus that has
      a muscular origin. This condition results from spontaneous
      spasms of the eustachian tube musculature, often described
      as a clicking sensation. Treatment relying on medication
      yielded poor results, with the advent of botulinum toxin
      becoming more and more promising.
      Method and Results: A 20-year-old male patient presented
      with complaints of bilateral ringing objective tinnitus and ear
      click. The ear click started at the age of 6 years but it became
      intolerable at the age of 18 years, fact that led the patient to
      quit his job and seek for medical advice. When he presented
      in our hospital he has palatal myoclonic contractions visible
      on the left with a frequency of 110 bits/min. The patient
      refused a botulinum toxin injection that was proposed
      as the appropriate management and he was placed on
      Levetiracetam up to 1000 mg/day. On the follow-up visits
      there was a significant improvement of the tolerability of the
      ear click and an objective decrease of the frequency of the
      muscle contractions to 70 bits/min.
      Conclusions: Essential myoclonus is usually sporadic and has
      a quite variable natural history ranging from spontaneous
      remission to a persistent distressing state. Botulinum toxin
      treatment by injecting the contracting muscle is a promising
      solution but the possibility of transient swallowing side
      effects makes it not very acceptable from the patients.
      Levetiracetam is a relative new, well tolerated and easy
      to test antiepileptic drug that exerts anti-myoclonic effect.
      In our case it is speculated that the good response was
      achieved by decreasing the frequency of myoclonus, thereby
      making the click tolerable. In essential myoclonus a trial
      with Levetiracetam is recommended especially when other
      treatment options are not applicable.
       

      Attached Files:

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    12. medal

      medal Member

      Tinnitus Since:
      11/2015
      Cause of Tinnitus:
      acoustic trauma
      @Danny Boy I'm a bit confused what's seen as hyperacusis atm, unless it's pain caused by sounds. i got a buzzing sound in my head and a light tinnitus tone in my right ear.. With with some external sounds I hear a loud ringing in my head which goes away when the external sound is not present. Is this seen as a form of hyperacusis (in your comments I saw that reactive tinnitus can be seen as hyperacusis if im correct) or a tinnitus spike? Thinking of taking keppra soonish..
       
    13. medal

      medal Member

      Tinnitus Since:
      11/2015
      Cause of Tinnitus:
      acoustic trauma
      @Danny Boy Could you please elaborate on this as I want to see my doctor asap. I appreciate all the effort
       
    14. AUTHOR
      AUTHOR
      Danny Boy
      Cheerful

      Danny Boy Member Benefactor Hall of Fame

      Location:
      England
      Tinnitus Since:
      7/2014
      Cause of Tinnitus:
      Ear infection
      Sounds more like reactive tinnitus. Keppra could work for you, but everyone is different. I don't really recommend drugs anymore, as it'll be wrong to do. It's up to you, if you want to go through with it. I wish you all the best ^_^.
       
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    15. Zechariah

      Zechariah Member Benefactor

      Location:
      Finland
      Tinnitus Since:
      05/2014
      Cause of Tinnitus:
      Acoustic Trauma
      Hyperacusis means that even low volume sounds can feel loud or uncomfortable - even normal human speech.

      Reactive tinnitus means that when there is some background noise, your tinnitus tries to stay on top of that which results to louder tinnitus perception (maybe even objectively louder tinnitus) for that time and in same cases - some hours after. Imo you decribed reactive tinnitus like Danny Boy wondered above.

      Some people have reported that Keppra helps on both but this is just a handful of people.
       
    16. medal

      medal Member

      Tinnitus Since:
      11/2015
      Cause of Tinnitus:
      acoustic trauma
      Fair enough, guess it's a matter of trying. From you experience do you think trobalt works better on reactive tinnitus?

      Thanks that makes it more clear. Guess I just need to try it in that case..though, I don't want to try keppra and trobalt at the same time, so just considering which one could work better on my reactive tinnitus.
       
    17. AUTHOR
      AUTHOR
      Danny Boy
      Cheerful

      Danny Boy Member Benefactor Hall of Fame

      Location:
      England
      Tinnitus Since:
      7/2014
      Cause of Tinnitus:
      Ear infection
      Trobalt never did anything for reactive tinnitus. I was on trobalt way before I started keppra.
       
    18. medal

      medal Member

      Tinnitus Since:
      11/2015
      Cause of Tinnitus:
      acoustic trauma
      I've read on the forum it did for @Mpt for example ? I guess everyone is different, like you mentioned already. But Keppra did work for your reactive tinnitus not just hyperacusis? I understand you don't want to push anyone into taking drugs, it's my own decision. Though, your info and that of @Viking have been very informative together with everything else on this forum:)
       
    19. AUTHOR
      AUTHOR
      Danny Boy
      Cheerful

      Danny Boy Member Benefactor Hall of Fame

      Location:
      England
      Tinnitus Since:
      7/2014
      Cause of Tinnitus:
      Ear infection
      Glad to help. I hope you get better.
       
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    20. Mithrandir
      Ape-like

      Mithrandir Member

      Tinnitus Since:
      10/2015
      Cause of Tinnitus:
      Acoustic Shock Disorder (TTTS)
      Are @Danny Boy & @Viking still out of H and reactive tinnitus ? I'd like your opinions guys :) Thank you so much !!
       
    21. linearb
      Psychedelic

      linearb Member Benefactor Hall of Fame

      Location:
      beliefs are makyo and reality ignores them
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      karma
      As far as I know, Viking is not doing very well, I am sorry to say. He has not been around for quite a while, but some of the last things he posted here were not very optimistic :-/
       
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    22. AUTHOR
      AUTHOR
      Danny Boy
      Cheerful

      Danny Boy Member Benefactor Hall of Fame

      Location:
      England
      Tinnitus Since:
      7/2014
      Cause of Tinnitus:
      Ear infection
      Nope. I don't have hyperacusis anymore, thankfully.
       
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    23. medal

      medal Member

      Tinnitus Since:
      11/2015
      Cause of Tinnitus:
      acoustic trauma
      So your reactive tinnitus did return?
       
    24. Mithrandir
      Ape-like

      Mithrandir Member

      Tinnitus Since:
      10/2015
      Cause of Tinnitus:
      Acoustic Shock Disorder (TTTS)
      Viking is new on H ??? Or he just keeps his awful T ?
       
    25. Christian78
      Alone

      Christian78 Member

      Location:
      Gothenburg
      Tinnitus Since:
      (Sep 2013)
      Cause of Tinnitus:
      progressive tinnitus, time of expiring in next 3-6 months
      Danny asked me to post so i will, i was unable to hear humming water in heating unit or boiling cattle and so on but i used 500x2 of this drug for 1,5 month Keppra.

      Now i dont have H. It is just like that. Simple. but my tinnitus gor incresed for 9th time, and it is obvious i have hearing loss on left ear becouse i dont hear tones that i could 8 months ago, while well. T gone worse and hearing left worse, H gone away.
       
    26. Mithrandir
      Ape-like

      Mithrandir Member

      Tinnitus Since:
      10/2015
      Cause of Tinnitus:
      Acoustic Shock Disorder (TTTS)
      @Christian78 that's a good news for H, which is really horrible... do you feel better now ?
       
    27. Christian78
      Alone

      Christian78 Member

      Location:
      Gothenburg
      Tinnitus Since:
      (Sep 2013)
      Cause of Tinnitus:
      progressive tinnitus, time of expiring in next 3-6 months
      During my use of keppra my tinnitus got worse 2 times dec and jan, so definitely i don't feel better but H is better i don't pay attention on it.
       
    28. medal

      medal Member

      Tinnitus Since:
      11/2015
      Cause of Tinnitus:
      acoustic trauma
      Starting Keppra this week for my reactive tinnitus. How long did it take for you to start noticing effects? Second week im using Trobalt which decreases my tonal tinnitus but it has no effect on reactive tinnitus. You started at a dosage of 2x500 and never went up? @Danny Boy how long were you on 2x500 mg and how fast did you taper up?
       
    29. AUTHOR
      AUTHOR
      Danny Boy
      Cheerful

      Danny Boy Member Benefactor Hall of Fame

      Location:
      England
      Tinnitus Since:
      7/2014
      Cause of Tinnitus:
      Ear infection
      Keppra dosing information
      Usual Adult Dose of Keppra for Seizures:

      16 years of age and older:

      Initial Dose: 1000 mg daily by either immediate release oral or intravenous administration, given as 500 mg twice daily. Additional dosing increments may be given (1000 mg/day additional every 2 weeks) to a maximum recommended daily dose of 3000 mg. There is no evidence that doses greater than 3000 mg/day confer additional benefit.

      Also, I don't remember when I started noticing the benefits. I never monitored dates sadly.
       
    30. medal

      medal Member

      Tinnitus Since:
      11/2015
      Cause of Tinnitus:
      acoustic trauma
      thanks man, gonna start the standard 2x 500 dose and see what happens. You took it for 2 months,if im not mistaken, to be fully cured from reactive T? I know your posts said so but I still wanna be sure...
       
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