Levetiracetam (Keppra) Worked for My Hyperacusis

[Danny Boy]

I did so, went to 2500 for a week and had terrible spike and H! Went down to 2000 and thinking about further dropping to 1500mg. I cannot be sure of its theraputic quality since bad days keep coming back to me. There is no constant improvement, only these good signs in good days. But when bad days hit (half of the week) I keep loosing faith in the drug...

Hm, well keep on going. Even Autifony's drug doesn't work instantly.

 

[quietatnight]

Danny Boy

I'm glad that it helped you with the loudness, mine is mostly things like my refridgator, and furance when they kick on it's really loud.

So what do you think is going to happen when you stop taking it ? Do you think things will stay quiet or will the volume go back up again ? That will be interesting. And did Keppra help at all with your tinnitus ? I would sure like to know that ? as well. I have an appointment with a neurlogoist I guess I will see what he has to say.


Let me know what you think ?

 

[Street Spirit]

Danny Boy

I'm glad that it helped you with the loudness, mine is mostly things like my refridgator, and furance when they kick on it's really loud.

So what do you think is going to happen when you stop taking it ? Do you think things will stay quiet or will the volume go back up again ? That will be interesting. And did Keppra help at all with your tinnitus ? I would sure like to know that ? as well. I have an appointment with a neurlogoist I guess I will see what he has to say.


Let me know what you think ?

Good luck with your Neuro appt

 

[quietatnight]

Thank You Street Spirit

 

[Danny Boy]

Danny Boy

I'm glad that it helped you with the loudness, mine is mostly things like my refridgator, and furance when they kick on it's really loud.

So what do you think is going to happen when you stop taking it ? Do you think things will stay quiet or will the volume go back up again ? That will be interesting. And did Keppra help at all with your tinnitus ? I would sure like to know that ? as well. I have an appointment with a neurlogoist I guess I will see what he has to say.


Let me know what you think ?

Can't comment on the tinnitus thing, as I'm on trobalt. But from what I can assertion, the hissing noise is associated with hyperacusis and keppra can help lower that considerably.

 

[skoupidis]

Progress update: No further development. Right now, I am at 1000mg daily, it is really hard to say anything positive, since bad days remain really bad, and the drug does not seem to have any temporary or permanent effect whatsoever.

The only thing I can say is that there are good days, T volume wise, that seem to be really good, but they remain the same for the last month. No further improvement whatsoever, even in sound distortion or reactive T which seemed to be my only positive points.

So, no real progress observed in the last month... I try to decide what to do, perhaps tapering down and posting a final conclusion is in order, after the drug wears off completely.

 

[Street Spirit]

Progress update: No further development. Right now, I am at 1000mg daily, it is really hard to say anything positive, since bad days remain really bad, and the drug does not seem to have any temporary or permanent effect whatsoever.

The only thing I can say is that there are good days, T volume wise, that seem to be really good, but they remain the same for the last month. No further improvement whatsoever, even in sound distortion or reactive T which seemed to be my only positive points.

So, no real progress observed in the last month... I try to decide what to do, perhaps tapering down and posting a final conclusion is in order, after the drug wears off completely.

thanks for your update..sorry to hear it's not working out the greatest though.

 

[PaulBe]

I suspect that the causes of Danny's hyperacusis aren't the same for Skoupidis. We are after all chasing symptoms here and all flying a bit blind on cause. Nevertheless, a brave try and it adds to what we know, thanks Danny and Skoupidis (not to mention Viking).

 

[Danny Boy]

I suspect that the causes of Danny's hyperacusis aren't the same for Skoupidis. We are after all chasing symptoms here and all flying a bit blind on cause. Nevertheless, a brave try and it adds to what we know, thanks Danny and Skoupidis (not to mention Viking).

Well, keppra is quite safe...Just trobalt you need to worry about.

 

[DebInAustralia]

Danny boy ...

Is your tinnitus somatic?

What exactly do you hear?

 

[Danny Boy]

Danny boy ...

Is your tinnitus somatic?

What exactly do you hear?

It's not somatic. I have normal tinnitus.

 

[skoupidis]

Progress update:

Still keeping 1000mg daily, one pill at night. Was about to taper down but I noticed improvement, mainly in H and in T volume in good days. I must point out that I do swim a lot whenever I manage to go to the sea, about 3-4 days/week and at swimming days my T reduces substantially. The next day my T comes back but it is less bothersome. The hyperacusis becomes better and, most basically, sound distortion seems to be better, songs keep clearing up.

Now, there are 4 possible reasons for the improvement:

1) Swimming
2) Keppra with vitamin E (eviol)
3) Good weather
4) Passage of time

And of course, there is the dreaded possibility of this being temporary and I have a setback.
I would suggest to try the above things, altogether if possible.
I will keep on at 1000mg Keppra and swimming and post here my progress.

Don't let the summer go by without using the sea! Get in there every chance you got. And let water fill your ears, if that is possible!

cheers!

 

[Danny Boy]

Progress update:

Still keeping 1000mg daily, one pill at night. Was about to taper down but I noticed improvement, mainly in H and in T volume in good days. I must point out that I do swim a lot whenever I manage to go to the sea, about 3-4 days/week and at swimming days my T reduces substantially. The next day my T comes back but it is less bothersome. The hyperacusis becomes better and, most basically, sound distortion seems to be better, songs keep clearing up.

Now, there are 4 possible reasons for the improvement:

1) Swimming
2) Keppra with vitamin E (eviol)
3) Good weather
4) Passage of time

And of course, there is the dreaded possibility of this being temporary and I have a setback.
I would suggest to try the above things, altogether if possible.
I will keep on at 1000mg Keppra and swimming and post here my progress.

Don't let the summer go by without using the sea! Get in there every chance you got. And let water fill your ears, if that is possible!

cheers!

1000mg? That's a tad low? It should be 2000-3000mg. Anyway, how long have you been on keppra? It should take 3 months.

 

[skoupidis]

1000mg? That's a tad low? It should be 2000-3000mg. Anyway, how long have you been on keppra? It should take 3 months.

2 and an half months. Was about to quit as it didn't seem to have a good effect when in 2000mg. Actually, I had a setback when in high dosages... Best results, if came from Keppra, I got in low dosages. I repeat IF Keppra is responsible. Right now I would bet my money on ...swimming!

 

[Danny Boy]

2 and an half months. Was about to quit as it didn't seem to have a good effect when in 2000mg. Actually, I had a setback when in high dosages... Best results, if came from Keppra, I got in low dosages. I repeat IF Keppra is responsible. Right now I put my money in for ...swimming!

You should've up the dose to 3000mg that's the max dosage. As for swimming, I don't know how that lowers hyperacusis, as there's no logical reason for that to work.

 

[Christian78]

Hopefully in one more month's time, it'll be even better! Higher the dose and you'll be all cool! I'm super happy you're seeing results and it kind of reinforces that the KV3.1 channels have a place in tinnitus/hyperacusis...Which makes me wonder if Autifony's new drug helps with hyperacusis.

Do you use this new
perampanel

they say it is very good for tinnitus

 

[skoupidis]

You should've up the dose to 3000mg that's the max dosage. As for swimming, I don't know how that lowers hyperacusis, as there's no logical reason for that to work.

Went up to 2500mg for about a week, it was really bad... I don't know what helps, I just keep on doing whatever I do right now since I feel better. Perhaps it is the hot weather...

 

[Danny Boy]

Do you use this new
perampanel

they say it is very good for tinnitus

I've already posted that...And no, I wouldn't be able to get it from a doctor.

 

[Danny Boy]

2 and an half months. Was about to quit as it didn't seem to have a good effect when in 2000mg. Actually, I had a setback when in high dosages... Best results, if came from Keppra, I got in low dosages. I repeat IF Keppra is responsible. Right now I would bet my money on ...swimming!

Ok then....

 

[erik]

I would say

Progress update:

Still keeping 1000mg daily, one pill at night. Was about to taper down but I noticed improvement, mainly in H and in T volume in good days. I must point out that I do swim a lot whenever I manage to go to the sea, about 3-4 days/week and at swimming days my T reduces substantially. The next day my T comes back but it is less bothersome. The hyperacusis becomes better and, most basically, sound distortion seems to be better, songs keep clearing up.

Now, there are 4 possible reasons for the improvement:

1) Swimming
2) Keppra with vitamin E (eviol)
3) Good weather
4) Passage of time

And of course, there is the dreaded possibility of this being temporary and I have a setback.
I would suggest to try the above things, altogether if possible.
I will keep on at 1000mg Keppra and swimming and post here my progress.

Don't let the summer go by without using the sea! Get in there every chance you got. And let water fill your ears, if that is possible!

cheers!

Great for the improvements. I would say "passage of time" in your case since Keppra really didn't work for you. I think swimming might even have played a part. I had pretty bad hyperacusis which improved on it's own eventually after a matter of months, at least for the worst of it. I still have it mildly but it is tolerable. I did take many different supplements and Ativan for a short period, but I don't believe they did anything for my T or H. However, believing there is a chance that something might help is almost as good.

With T and H there are too many variables, too many causes, too many different effects. I don't think one pill/treatment will work for everyone until they can isolate a single region of the brain/function that can be impacted (if it exists). And if it is true tinnitus/hyperacusis effects multiple regions of the brain differently in different people, we are in it for the long haul.

 

[Danny Boy]

I would say

Great for the improvements. I would say "passage of time" in your case since Keppra really didn't work for you. I think swimming might even have played a part. I had pretty bad hyperacusis which improved on it's own eventually after a matter of months, at least for the worst of it. I still have it mildly but it is tolerable. I did take many different supplements and Ativan for a short period, but I don't believe they did anything for my T or H. However, believing there is a chance that something might help is almost as good.

With T and H there are too many variables, too many causes, too many different effects. I don't think one pill/treatment will work for everyone until they can isolate a single region of the brain/function that can be impacted (if it exists). And if it is true tinnitus/hyperacusis effects multiple regions of the brain differently in different people, we are in it for the long haul.

Hm, many people are seeing improvements with trobalt for hyperacusis, even geo is...I just combine the two myself.

 

[erik]

Hm, many people are seeing improvements with trobalt for hyperacusis, even geo is...I just combine the two myself.

And I also think just as many see improvements with the "passage of time". Everyone's brains works, functions, repairs and adapts at different paces. I am not saying do anything at all. Hell, I probably would have even tried Trobalt if I knew about it or could get it) when I had my bad H. My H was far worse than my T at the time and the combination of the two at once was pretty devastating.

I think it is good that if people are going to try it, they continue to report their self-findings here to help others make that decision. Thanks

 

[Danny Boy]

And I also think just as many see improvements with the "passage of time". Everyone's brains works, functions, repairs and adapts at different paces. I am not saying do anything at all. Hell, I probably would have even tried Trobalt if I knew about it or could get it) when I had my bad H. My H was far worse than my T at the time and the combination of the two at once was pretty devastating.

Yeah, hyperacusis was pure hell for me as was the reactive tinnitus..Thankfully they are gone now. I just wish we all could get drugs which will help us. I'd never understand why we are belittled when there are so many sufferers.

 

[erik]

Yeah, hyperacusis was pure hell for me as was the reactive tinnitus..Thankfully they are gone now. I just wish we all could get drugs which will help us. I'd never understand why we are belittled when there are so many sufferers.

Yes I don't think anyone needs to be belittled for trying any type treatment (except maybe "tinnitus miracle--that POS!). It is only natural to want to do everything in your power to help yourself. If you have the means, want to take the risk, understand the risks and find a doctor who can prescribe/guide/monitor you, go for it. You don't want to have regrets later that you did not try in the first place.

 

[Christian78]

I've already posted that...And no, I wouldn't be able to get it from a doctor.

i dont know what is normal dosage, or price, i will try to force my doctor to get it

 

[Danny Boy]

i dont know what is normal dosage, or price, i will try to force my doctor to get it

It's one pill a day and it has a long half-life.

 

[Christian78]

It's one pill a day and it has a long half-life.

HL of 108 hours

 

[Danny Boy]

HL of 108 hours

Pretty long eh?

 

[Zimichael]

I posted this below in the "On Retigabine" thread then later realized it is not showing up, as it is in the "N." Archives...so not sure if it will be "seen". Hence this re-post...and possible "moving of this" to the correct Keprra thread. Which as mentioned, seems to have become mostly dormant.

Fist up...WHAT IS THE MAIN KEPPRA THREAD THESE DAYS??? Seems like there are Keppra sequences all over the darn place, yet we used to have that main Keppra thread...which is now dormant. Ummmmm?????

Mark...Well this point above is an old thorn of mine isn't it. That doing the "exposure, not hiding behind a fear bush" thing can be hazardous to your health. If there is an H element involved (and maybe there is in a ton of initial T but it fades fast - even in days?!) then "exposure" can really screw you over. Etc., etc.

I looked up ablation and can't see specifically what you are aiming at if not "deafness inducement". Which seems radical? Am I missing something???

*(Have the Keppra, 60 pills @ 500 mg. standard not XR = good, 'cause XR caps can freak my finickety gut believe it or not. Will decide on impulse when to start I guess, as clearly it will be 'solo' venture - again...Sigh!
Probably after Wednesday though, as have a doc appointment to get through that day).

Best, Zimichael

 

[lapidus]

I posted this below in the "On Retigabine" thread then later realized it is not showing up, as it is in the "N." Archives...so not sure if it will be "seen". Hence this re-post...and possible "moving of this" to the correct Keprra thread. Which as mentioned, seems to have become mostly dormant.

This thread isnt dormant. But there are very few people testing Keppra and those who do are mainly doing it for H, not T so they give updates in the Keppra thread in the H section. The one that Danny Boy created.