Levetiracetam (Keppra) Worked for My Hyperacusis

[lapidus]

I was up to 4,000 a day. Side-effects- sleepiness and weakness.

And you were also on other stuff too like trobalt.

 

[Danny Boy]

And you were also on other stuff too like trobalt.

Yes, trobalt correct.

 

[Codaz]

But will that have any effect on H or T?

Well they both were very unaware of T in general. They say it's the ENT's department *sigh*

 

[Jakob Antema]

Yes, trobalt correct.

Danny Boy, just went through this thread, and your posts and willingness to share are impressive! Thank you! Is your H still non-existent? Are you still taking Keppra? Seems like you started a few years ago... did you just do it for a few months and then how many years/months after stopping are you still seeing the benefit of non-existent H? And how is your T? Thanks!

 

[Nebras5]

Do any of you have experience with Keppra (Levetiracetam)?

 

[Krolo]

Is there anyone still on the forums who did try Keppra?
@Pleasure_Paulie Hey Paulie, Do u know by any chance?

 

[Krolo]

So after having crippling reactive T and Hyperacusis plus regular T i figured that I would take the plunge and try Keppra. Finally managed to get a prescription for it and will keep you updated. So far into my first day.

 

[BuzzyBee]

So after having crippling reactive T and Hyperacusis plus regular T i figured that I would take the plunge and try Keppra. Finally managed to get a prescription for it and will keep you updated. So far into my first day.

Please do keep us informed! I have the same thing and am starting to think all the people around me think I'm nuts. No one understands how annoying the reactive part is.

 

[Krolo]

Please do keep us informed! I have the same thing and am starting to think all the people around me think I'm nuts. No one understands how annoying the reactive part is.

Will do for sure, I know the Keppra disscussion has died out recently but for me the H and reactive T is by far the worst and hope that it will have some effect on it.

 

[shasta0863]

Will do for sure, I know the Keppra disscussion has died out recently but for me the H and reactive T is by far the worst and hope that it will have some effect on it.

Since a smoke alarm wen't off, and the fact instead of being able to spend months in silence, I've had to work and be exposed to noises which at times have been bad, my H has become worse and the reactive tone in my right ear which I got sometimes in the past and wen't away, is now back and sticking and much worse. I'm terrified. I can't stomach it at all. It's sharp and high pitch, there's no baselevel, it just goes up and down and up and down. Wind outside and normal day sounds, just make it react and compete. A.C, faucet, same story. Silence is best, even though it's still there, just because it's less intensive.

I can't believe this has come back so bad. But with all the noise I have no compared to months of silence before, why am I surprised. Get more noise and make such your ears are getting sound enrichment I say doesn't work for everyone. It may not have been living, but I felt better closing myself away then I do now. I'm worse than I was 3 years ago. Can't even just have normal T, it has to be this reactive/Hyperacusis bullshit too.

 

[James Brown]

Since a smoke alarm wen't off, and the fact instead of being able to spend months in silence, I've had to work and be exposed to noises which at times have been bad, my H has become worse and the reactive tone in my right ear which I got sometimes in the past and wen't away, is now back and sticking and much worse. I'm terrified. I can't stomach it at all. It's sharp and high pitch, there's no baselevel, it just goes up and down and up and down. Wind outside and normal day sounds, just make it react and compete. A.C, faucet, same story. Silence is best, even though it's still there, just because it's less intensive.

I can't believe this has come back so bad. But with all the noise I have no compared to months of silence before, why am I surprised. Get more noise and make such your ears are getting sound enrichment I say doesn't work for everyone. It may not have been living, but I felt better closing myself away then I do now. I'm worse than I was 3 years ago. Can't even just have normal T, it has to be this reactive/Hyperacusis bullshit too.

Man ,how i understand you. Same thing with me , and there´s things we can´t prevent ,like sirens and alarms and other stuff.I think i have the same you have ,and to me silence is best. When i get outside my T and my H go over the roof and a curious thing ,some days i use earplugs and the sound stays the same ,others i use earplugs and the volume of my T goes insane.It´s curious because it all depends on the kind of sound i have that day.If i have a high pitch it will be hell ,if i have a hiss things will be calm.

 

[grate_biff]

I´m in the same shit @shasta0863 and @James Brown.
My hyperacusis and reactive tinnitus is actually becoming a bigger problem than my tinnitus. At least it is what isolates me from the world and its people (who don´t understand).

I have loads of both Keppra and Trobalt, but never dared to try them.

Hopefully Frequency Therapeutics will come through for us soon!

 

[Johan_L]

Will do for sure, I know the Keppra disscussion has died out recently but for me the H and reactive T is by far the worst and hope that it will have some effect on it.

Any updates Krolo? Has the H improved? Any negative side effects?

And how did you get the (Swedish) doctor to prescribe it? I've seen like 7 ENTs and no one of them showed any interest in trying something...

 

[Krolo]

Any updates Krolo? Has the H improved? Any negative side effects?

And how did you get the (Swedish) doctor to prescribe it? I've seen like 7 ENTs and no one of them showed any interest in trying something...

Side effect wise I got some mild tingling in my legs I guess. Regarding any effects I would say my H has gotten milder and an extreme and painful type of tinnitus actually eased off quite alot. There's still lots of sounds in my head still and H is still there but compared to 1,5 weel ago I would say there is progress.

Yeah, getting it prescribed in Sweden is litteraly impossible since their thoughts are hearing aids, cbt and if u feel really bad u take anti depressants. I would say that they really misunderstand the suffering of people.

 

[Johan_L]

Side effect wise I got some mild tingling in my legs I guess. Regarding any effects I would say my H has gotten milder and an extreme and painful type of tinnitus actually eased off quite alot. There's still lots of sounds in my head still and H is still there but compared to 1,5 weel ago I would say there is progress.

Yeah, getting it prescribed in Sweden is litteraly impossible since their thoughts are hearing aids, cbt and if u feel really bad u take anti depressants. I would say that they really misunderstand the suffering of people.

Glad you are getting better! Keep us posted

 

[James Brown]

I´m in the same shit @shasta0863 and @James Brown.
My hyperacusis and reactive tinnitus is actually becoming a bigger problem than my tinnitus. At least it is what isolates me from the world and its people (who don´t understand).

I have loads of both Keppra and Trobalt, but never dared to try them.

Hopefully Frequency Therapeutics will come through for us soon!

I have T for 20 years.My H just began 5 years ago because of a strong acoustic trauma ,but only 1 year ago (it makes one year today),because of a loud siren, things become worst and my life was turned upside down.I began to be sensitive to things like running water from a tap , turning paper sheets or people talking loud or close to me, between other things. Before that i just used to protect myself when i was traveling in trains ,subway or when the planes take off.Nowadays i don´t leave home without earplugs and sometimes even earplugs doesn't seem enough´. I used to travel a lot ,but now my life seems a bit limited and confined.Until one year ago i used to travel without any fear.Now i confess even with protection i am not confident.In the good days ,days my T is low i can use earplugs without major problems. In the days my T is sharp and piercing ,if i use earplugs the sound level becomes insane and to travel 10 hours in a plane like that is a hell and i never know what kind of noise i will have next day.It´s a hard life right now.

 

[Krolo]

I have T for 20 years.My H just began 5 years ago because of a strong acoustic trauma ,but only 1 year ago (it makes one year today),because of a loud siren, things become worst and my life was turned upside down.I began to be sensitive to things like running water from a tap , turning paper sheets or people talking loud or close to me, between other things. Before that i just used to protect myself when i was traveling in trains ,subway or when the planes take off.Nowadays i don´t leave home without earplugs and sometimes even earplugs doesn't seem enough´. I used to travel a lot ,but now my life seems a bit limited and confined.Until one year ago i used to travel without any fear.Now i confess even with protection i am not confident.In the good days ,days my T is low i can use earplugs without major problems. In the days my T is sharp and piercing ,if i use earplugs the sound level becomes insane and to travel 10 hours in a plane like that is a hell and i never know what kind of noise i will have next day.It´s a hard life right now.

Sorry to hear about your situation. Stay strong. I know how you feel. I used to travel around the world working an awesome job and now I am basically stuck at home since my T is so darn reactive that I can´t even comprehend. Stay strong!

 

[Krolo]

Ok. So after about 2 weeks of Keppra going up to doses of 1500mg before realizing that my next shipment of Keppra would be delayed I had to cut back to 500mg a day which basically made all worst sounds come back with force + increase of Hyperacusis
Today is the first morning when I took 500mg again in the morning and litterally after about 40 minutes sounds changed in my head and reactivness has cleared up by quite alot. Same feeling as I had last time I got to this dose.
There are some sound differences to the T that is happening, very unclear if it is for the better or worse considering the different amount of loud noises I do have inside my head.
But I would say that some of the sounds have taken the backseat in the bus sort of speak.

Me theorizing my situation it seems that whatever Keppra is doing I have to stay equally vigilant about sound exposure.
When I hear crickets in my left ear I know I am in for a rough patch since those are a sign that I have overdone it and there will be hell. With Keppra though the crickets are harder to hear since they also take the backseat.


I will have an appointment with a Tinnitus specialist in my town on the 18th and will disclose my use of K. Worst part is in Sweden, I get 30 minutes of time with my doctor and to explain my situation I have to write it all down in advance due to the complexity.

 

[RCP1]

Ok. So after about 2 weeks of Keppra going up to doses of 1500mg before realizing that my next shipment of Keppra would be delayed I had to cut back to 500mg a day which basically made all worst sounds come back with force + increase of Hyperacusis
Today is the first morning when I took 500mg again in the morning and litterally after about 40 minutes sounds changed in my head and reactivness has cleared up by quite alot. Same feeling as I had last time I got to this dose.
There are some sound differences to the T that is happening, very unclear if it is for the better or worse considering the different amount of loud noises I do have inside my head.
But I would say that some of the sounds have taken the backseat in the bus sort of speak.

Me theorizing my situation it seems that whatever Keppra is doing I have to stay equally vigilant about sound exposure.
When I hear crickets in my left ear I know I am in for a rough patch since those are a sign that I have overdone it and there will be hell. With Keppra though the crickets are harder to hear since they also take the backseat.


I will have an appointment with a Tinnitus specialist in my town on the 18th and will disclose my use of K. Worst part is in Sweden, I get 30 minutes of time with my doctor and to explain my situation I have to write it all down in advance due to the complexity.

Sounds like there is a drug which makes a dent in T. Best of luck at your appointment.

 

[Krolo]

Sounds like there is a drug which makes a dent in T. Best of luck at your appointment.

Thanks, I am inclining to think that for some people Keppra can make a difference. Especiallly if there is any Hyperacusis or Reactivity involved.
Would also like to stress that if one has mild T, do not even think about trying Keppra.
I am definitely on the bad end of T and H so for me it´s more to try anything that remotely has worked.
Next up will be to try and find something to add to the Keppra to see if it can further reduce things.

 

[coffee_girl]

huh?

 

[Johan_L]

Ok. So after about 2 weeks of Keppra going up to doses of 1500mg before realizing that my next shipment of Keppra would be delayed I had to cut back to 500mg a day which basically made all worst sounds come back with force + increase of Hyperacusis
Today is the first morning when I took 500mg again in the morning and litterally after about 40 minutes sounds changed in my head and reactivness has cleared up by quite alot. Same feeling as I had last time I got to this dose.
There are some sound differences to the T that is happening, very unclear if it is for the better or worse considering the different amount of loud noises I do have inside my head.
But I would say that some of the sounds have taken the backseat in the bus sort of speak.

Me theorizing my situation it seems that whatever Keppra is doing I have to stay equally vigilant about sound exposure.
When I hear crickets in my left ear I know I am in for a rough patch since those are a sign that I have overdone it and there will be hell. With Keppra though the crickets are harder to hear since they also take the backseat.


I will have an appointment with a Tinnitus specialist in my town on the 18th and will disclose my use of K. Worst part is in Sweden, I get 30 minutes of time with my doctor and to explain my situation I have to write it all down in advance due to the complexity.

How did it go? And has the H continued to improve?

 

[Krolo]

How did it go? And has the H continued to improve?

I would say that the results so far are inconclusive. Haven't been able to go back on a higher dose so am unsure.
There is a chance I got some new sounds due to Keppra but also didnt care much since Keppra seemed to alleviate some of the dark mood aswell.
Regarding H it seems to take it down a bit on the higher doses.

 

[Lucifer]

Has anyone recently tried Keppra for hyperacusis?

 

[GBB]

I will likely be on this drug in about a month's time - neurologist said it was relatively safe and would be happy to let me try it. I will update then.

 

[Marin]

I will likely be on this drug in about a month's time - neurologist said it was relatively safe and would be happy to let me try it. I will update then.

I hope it works for you, and I'd love to hear how it goes! I'm getting desperate, and have thought of trying it, too.

 

[GBB]

I hope it works for you, and I'd love to hear how it goes! I'm getting desperate, and have thought of trying it, too.

Apologies for the delay - I am trying Memantine first, but if that does not help Keppra will follow.

 

[Marin]

Apologies for the delay - I am trying Memantine first, but if that does not help Keppra will follow.

Ooooooooh, I was just reading about Memantine yesterday. I believe I read it could help with pain hyperacusis and tinnitus. I'd like to hear how this trial goes, too. Thanks for following up!!

 

[GBB]

Ooooooooh, I was just reading about Memantine yesterday. I believe I read it could help with pain hyperacusis and tinnitus. I'd like to hear how this trial goes, too. Thanks for following up!!

No worries, it is coming from Amazon pharmacy on Monday.

 

[Matchbox]

I have Memantine but the long half life freaked me out if things went wrong. I tried very little so can't say if it did much.

I tried DXM... similar idea, much shorter half life. it did reduce tones considerably to silent levels... but left some underlying "background" wavering sounds. Ultimately not super helpful. It got really loud at one point but ceased upon stopping within a day.

If you tap the back of your head to reduce the tinnitus with earplugs in you'll hear what I mean. Sounds like bells.

If you don't hear it, lucky you I guess. I always have some of that around.

Anyways, on DXM that bell effect was extreme. Given Memantine is also an NMDA sodium channel blocker I'd expect similar symptoms.