Is It True Some Members Cured Their Reactive Tinnitus with Keppra or Other Seizure Medications?

Discussion in 'Support' started by Layla23, Jan 9, 2019.

    1. Layla23
      Bookworm

      Layla23 Member

      Tinnitus Since:
      May 2017
      Cause of Tinnitus:
      Bars/nightclubs/MRI
      Is it true some members here cured their reactive tinnitus and hyperacusis with Keppra and/or other seizure medications?

      My neurologist prescribed it to me but I don’t have insurance. So it’s $800 for one bottle. I don’t have that kind of money at all.

      I’m hesitant to sell my possessions for it if it’s going to cause more problems.

      My visual snow is finally sort of going away. But I heard a member got visual snow specifically from Trobalt. So I guess I’m very conflicted.

      I read a study that seizure medications can help visual snow and tinnitus but that it can also ruin things more. Thoughts?

      My tinnitus and hyperacusis are out of control. TRT helped a little but not enough to make life liveable. Any advice?

      All the best,

      Layla
       
    2. Contrast
      No Mood

      Contrast Member Benefactor Hall of Fame

      Location:
      Clown World
      Tinnitus Since:
      late 2017
      Cause of Tinnitus:
      noise injury
      Did you really pay for TRT without insurance?
       
    3. DebInAustralia
      Fine

      DebInAustralia Member Benefactor Advocate

      Location:
      Geelong, Victoria
      Tinnitus Since:
      30/12/13
      I have only spoken to one person (but know of another) who used Keppra successfully to treat hyperacusis (Danny).

      Pretty sure there are threads on here about it.
       
    4. uae96
      Thinking

      uae96 Member

      Location:
      Dubai
      Tinnitus Since:
      6/14/2015
      Cause of Tinnitus:
      Noise induced
      Danny is a liar.
      His answers were never clear , and if you realized he says “maybe” at the end of his sentences.
      RIP tho.
       
      • Agree Agree x 1
      • Funny Funny x 1
      • Friendly Friendly x 1
    5. another sean
      Studious

      another sean Member Benefactor

      Location:
      Los Angeles
      Tinnitus Since:
      2015
      Cause of Tinnitus:
      Long duration of low audio
      From my understanding Trobalt helped Danny's tinnitus tremendously but it also caused visual snow and was the reason why he ended his life. I think stem cells would be safer.
       
    6. TheDanishGirl
      Sad

      TheDanishGirl Member Benefactor Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      05/2017 (H since 06/2017)
      Cause of Tinnitus:
      long term noise exposure (headphones), maybe some stress.
      Danny (rest his soul) got horrible eye issues and visual snow from it though.
       
    7. TheDanishGirl
      Sad

      TheDanishGirl Member Benefactor Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      05/2017 (H since 06/2017)
      Cause of Tinnitus:
      long term noise exposure (headphones), maybe some stress.
      Danny didn't kill himself. An autopsy ruled that out.
       
      • Agree Agree x 4
    8. DebInAustralia
      Fine

      DebInAustralia Member Benefactor Advocate

      Location:
      Geelong, Victoria
      Tinnitus Since:
      30/12/13
      No. He ended up with visual snow from Trobalt, not Keppra.
       
      • Agree Agree x 1
    9. TheDanishGirl
      Sad

      TheDanishGirl Member Benefactor Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      05/2017 (H since 06/2017)
      Cause of Tinnitus:
      long term noise exposure (headphones), maybe some stress.
      Oh, sorry. I thought Keppra and Trobalt was the same.
       
    10. Jack Straw
      Balanced

      Jack Straw Member Podcast Patron Benefactor Ambassador Hall of Fame Advocate

      Location:
      US
      Tinnitus Since:
      1990s
      Cause of Tinnitus:
      Infection, Acoustic Trauma
      Jesus... that’s a little extreme don’t you think?
       
      • Agree Agree x 3
    11. another sean
      Studious

      another sean Member Benefactor

      Location:
      Los Angeles
      Tinnitus Since:
      2015
      Cause of Tinnitus:
      Long duration of low audio
      @TheDanishGirl ok, I was waiting for the autopsy results, I didn't know they were shared. How did he die then?
       
    12. TheDanishGirl
      Sad

      TheDanishGirl Member Benefactor Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      05/2017 (H since 06/2017)
      Cause of Tinnitus:
      long term noise exposure (headphones), maybe some stress.
      @Markku shared this message on the last page of the thread "In Loving Memory of Danny Boy"

      "Update on Daniel's cause of death

      In the final post mortem carried out on Daniel, the cause of death was ruled as "adult sudden unexpected death syndrome" - the coroner wasn't able to ascertain the cause of death further than that.

      Our thoughts remain with Daniel's family and friends, and those who knew him"
       
      • Like Like x 1
    13. Rojo

      Rojo Member

      Tinnitus Since:
      October 2018
      Cause of Tinnitus:
      Neomycin/Xiflaxin
      So is this a no? With the trigeminal pain from my TTTS and the fluttering sometimes sounding like "typewriter" or morse code tinnitus, I was considering trying carbamazepine. Or Lyrica, since some on H-chat said they found it reduced their H some. I don't know what it is about antidepressants but they just destroy my head when I try taking them, happens to everyone in my family. But one dose of Gabapentin got rid of all of my tinnitus for an hour or two, before starting a new hissing sound inside my head. Been too scared to take it again ever since but I'm getting REALLY desperate now to find a way to get my H to recede just a bit so maybe I can even tolerate broadband noise/sound therapy.

      Don't want to make things worse though if nobody has gotten any good results from anticonvulsants for H.
       
    14. fliesatnight

      fliesatnight Member

      Tinnitus Since:
      as long as I can remember, worsened 2015
      Cause of Tinnitus:
      sound exposure
      Sorry for not speaking up sooner but I've been taking Keppra off and on for three years now. I don't have what I understand to be typical pain hyperacusis but my tinnitus is reactive and there have been enough signs that Keppra has a positive effect that I'm still taking it three years later. It's difficult to say though because my tinnitus can fluctuate a lot on its own. There was a period of about a year where I was doing well enough that I didn't feel the need to take it, but I had another sound exposure and things got worse again. I normally take it for 2 - 3 months and then taper off it for a while just to monitor how things are going without it.

      For example a few months ago I wasn't taking it and I had to stay up all night to take my car in for service, and to my surprise I had a serious spike for about a week, apparently just from the stress and lack of sleep. Currently I've been on it for about 10 weeks and right now I'm losing my mind from grief because my cat that I loved more than anything just died and I'm only sleeping 2 or 3 hours a night but somehow the tinnitus is still pretty livable.

      Anyone interested in trying it, I'd recommend reading through the two big topics on it in this forum and in the research news forum if you haven't already. I wouldn't necessarily expect it to be a cure, just something that could possibly help a little by making symptoms less severe. Some people in those topics did seem to have adverse effects. Personally my only seriously negative experience was withdrawal but I discovered the effects could mostly be mitigated by tapering off very slowly and taking the second daily dose at least 4 hours before bed. I do a lot of dosage adjustment. At most I take 250 mg twice a day since for me higher than that seemed to cause side effects, and I usually try to taper to 125 mg twice a day and stay there for most of the time I'm on it.

      I'll quote Viking's 2015 post about neurologist Nicola Rao's Keppra experimentation, which was a big part of the reason I decided to try it.

      @Layla23 I don't know if that's name brand Keppra or generic levetiracetam but that's awful if your only option is to pay $800 to fill one prescription. With insurance I pay something like $3 for 60 250 mg levetiracetam tablets, but then again $800 is less than two months worth of my insurance premiums.
       
      • Helpful Helpful x 2
    15. Krolo

      Krolo Member Benefactor

      Location:
      Sweden
      Tinnitus Since:
      1999 , Worse in September 2018
      Cause of Tinnitus:
      Loud Volume
      Regarding keppra I have mixed feelings about it. I have trialed it and it might have introduced new sounds but on the other hand it did quite bit with my mood and also the feeling of the tinnitus moving further away plus not as reactive tinnitus and Hyperacusis. But since i stopped them things are basicslly back to the same.

      We are all different but I would make sure that if you try it. Follow dosage regime and make sure you have a doctor with you on it. Also regular blood work since it metabolizes through the liver.
       
      • Helpful Helpful x 1
      • Informative Informative x 1
      • Creative Creative x 1
    16. EDogg

      EDogg Member

      Tinnitus Since:
      7/27/17
      Cause of Tinnitus:
      Unknown
      @Layla23 Levetiracetam (generic Keppra) should cost less than a tenth of what you were quoted out of pocket cost, which likely is brand name. Ask for generic.
       
      • Helpful Helpful x 1
    17. Marko Nakovski
      Bored

      Marko Nakovski Member Benefactor

      Location:
      North Macedonia
      Tinnitus Since:
      27.04.2017
      Cause of Tinnitus:
      Loud music
      I'm seriously thinking to try these pills. I must find a place where they sell it without prescription. I would try anything that could help ...
       
    18. Johan_L

      Johan_L Member

      Location:
      Sweden
      Tinnitus Since:
      05/2015
      Cause of Tinnitus:
      Noise induced
      Did you end up trying Keppra or any other drug?
       
      • Useful Useful x 1
    19. JasonP
      No Mood

      JasonP Member

      Tinnitus Since:
      6/2006
      Wow, that is terrible. Was the visual snow permanent? How did this happen? :(
       
    20. DebInAustralia
      Fine

      DebInAustralia Member Benefactor Advocate

      Location:
      Geelong, Victoria
      Tinnitus Since:
      30/12/13
      It was terrible for Danny. Yes, it was permanent. I don't know the mechanism sorry.
       
    21. Juan

      Juan Member

      Tinnitus Since:
      08/2014
      Cause of Tinnitus:
      Several causes
      One has to be careful with strong medication. Some drugs may have side effects in the long run, and cannot cure hyperacusis anyway.
       
      • Agree Agree x 2
    22. Marko Nakovski
      Bored

      Marko Nakovski Member Benefactor

      Location:
      North Macedonia
      Tinnitus Since:
      27.04.2017
      Cause of Tinnitus:
      Loud music
      @Juan Maybe not cure it completely but improve it a little bit? What do you think?
       
    23. Dr. Ancill

      Dr. Ancill Member Clinician

      Tinnitus Since:
      09/2013
      I think it's important to bring some scientific facts into this discussion. Antiseizure drugs, such as Keppra, have not been shown in published research to cure or even treat tinnitus. Every so often, a new antiseizure drug or one that is not generally available (like Trobalt) gets a groundswell of support and people are tempted to try and obtain this medication through any means. To date, disappointment has been universal.

      The problem is that antiseizure drugs have a lot nonspecific effects in the brain. Antiseizure drugs (such as gabapentin, pregabelin (Lyrica), lamotrigine ( Lamictal) and topiramate (Topamax)) have off-label use in chronic pain, mood disorders and anxiety. It is therefore not surprising that one or more of these medications may have some impact, transient or otherwise, on how an individual perceives the severity and/or volume of the tinnitus. That does not mean that these medications do not have a place but, as I have said many times I will continue to do so, expectations must be realistic.
       
      • Agree Agree x 1
    24. Johan_L

      Johan_L Member

      Location:
      Sweden
      Tinnitus Since:
      05/2015
      Cause of Tinnitus:
      Noise induced
      This relates to Hyperacusis in particular: There is basically no research. There is are some CBT studies and low quality sound therapy/TRT studies.

      There are anecdotal reports of ADs and Anti-seizure drugs that help sufferers. These drugs are sometimes used in clinics where the doctor has experience of H patients. As far as I know there is no study proving efficiency, but importantly, no studies that disprove them either.

      One can choose to wait and wait and wait and wait and wait until there are high quality RCT studies proving that these drugs work or don't work for H patients, or one can take the risk of side effects and try them now.

      Example of a treatment protocol for H, by Dr Hain, Professor Emeritus of Northwestern University:
      http://dizziness-and-balance.com/disorders/hearing/hyperacusis.htm

      hyperacusis%20management.jpg
       
      • Like Like x 3
    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 was not the only one. There was Viking, but he was a gang member who went nuts, changed his nickname to MIA and yeah, well, no one can trust what he says.
       
    26. Juan

      Juan Member

      Tinnitus Since:
      08/2014
      Cause of Tinnitus:
      Several causes
      I think genuine hyperacusis and tinnitus cannot be fixed and do not improve with medication. They evolve with time, some days one feels better, other days worse. But there are no meds and no treatment to fix them.
       
    27. PureNoise

      PureNoise Member

      Tinnitus Since:
      10/2018
      Cause of Tinnitus:
      Unknown
      Most anti seizure meds are known to cause tinnitus. And studies show they aren’t effective in treating tinnitus. I tried one... It made my tinnitus permanently worse.

      Never tried Trobalt.
       
      • Hug Hug x 1
    28. Jackjohnson183

      Jackjohnson183 Member Benefactor

      Tinnitus Since:
      2017
      Cause of Tinnitus:
      Ear wax removal
      Anyone tried this to reduce their hyperacusis?

      @DebInAustralia who was the other person that tried it other than Danny?
       
    29. HootOwl

      HootOwl Member Benefactor

      Location:
      California
      Tinnitus Since:
      2009
      Cause of Tinnitus:
      Explanation in About You
      Also bumping this thread. I’m in the process of getting my Keppra prescription. Will report back with any changes.
       
      • Like Like x 1

Share This Page

Loading...