Levetiracetam (Keppra) Worked for My Hyperacusis

[svintegrity]

@snow86 So to date, there are ZERO females who have tried these drugs? Besides me, that is . . . But one who will try Trobalt soon, and one who wants to try Keppra. Is this correct? Not a big sample size, but scientific revolutions sometimes only need an N =1. I hope for better results, e.g. fewer side effects, for other females.

@Danny Boy My SE were: bone-crushing fatigue, splitting headaches, unexpected chills, increased BP, weakness, emotional lability, and sense of despair and hopelessness.

In other words, it took away coping skills while also with helping with H. Not worth the trade-off in the long run, I guess. But I am very drug sensitive . . . Hardly even took anything for a flippin headache before T & H. It appears I need to address my H in other ways . . . .

I will be interested to see effects on T & H if/when other females try these drugs. It is becoming more and more documented that females respond differently to some med. regimens than males. Keep us posted . . .

And thanks @Danny Boy and @Zimichael as you continue to turn over the pharmacological rocks in this maze of meds. Kudos!

 

[Danny Boy]

@snow86 So to date, there are ZERO females who have tried these drugs? Besides me, that is . . . But one who will try Trobalt soon, and one who wants to try Keppra. Is this correct? Not a big sample size, but scientific revolutions sometimes only need an N =1. I hope for better results, e.g. fewer side effects, for other females.

@Danny Boy My SE were: bone-crushing fatigue, splitting headaches, unexpected chills, increased BP, weakness, emotional lability, and sense of despair and hopelessness.

In other words, it took away coping skills while also with helping with H. Not worth the trade-off in the long run, I guess. But I am very drug sensitive . . . Hardly even took anything for a flippin headache before T & H. It appears I need to address my H in other ways . . . .

I will be interested to see effects on T & H if/when other females try these drugs. It is becoming more and more documented that females respond differently to some med. regimens than males. Keep us posted . . .

And thanks @Danny Boy and @Zimichael as you continue to turn over the pharmacological rocks in this maze of meds. Kudos!

I get the weakness and headaches...It's not nice but then again hyperacusis is horrid, so it's worth the trade off for me.

 

[Rube]

@snow86 So to date, there are ZERO females who have tried these drugs? Besides me, that is . . . But one who will try Trobalt soon, and one who wants to try Keppra. Is this correct? Not a big sample size, but scientific revolutions sometimes only need an N =1. I hope for better results, e.g. fewer side effects, for other females.

@Danny Boy My SE were: bone-crushing fatigue, splitting headaches, unexpected chills, increased BP, weakness, emotional lability, and sense of despair and hopelessness.

In other words, it took away coping skills while also with helping with H. Not worth the trade-off in the long run, I guess. But I am very drug sensitive . . . Hardly even took anything for a flippin headache before T & H. It appears I need to address my H in other ways . . . .

I will be interested to see effects on T & H if/when other females try these drugs. It is becoming more and more documented that females respond differently to some med. regimens than males. Keep us posted . . .

And thanks @Danny Boy and @Zimichael as you continue to turn over the pharmacological rocks in this maze of meds. Kudos!

There was at least 1 or 2 females taking trobalt, then they disappeared. I don't remember names but they did complete the trobalt user profiles.

 

[svintegrity]

@Danny Boy I completely understand your point. In my case, the SE were completely overwhelming the benefits, so not worth it in the long run. Kind of like some people's experience on Trobalt, I suppose. Again, gender, physiology, size, etc. . . all may play a role. Ta!

@Rube Thanks, I will check the profiles. I like your new avatar!

 

[Danny Boy]

@Danny Boy I completely understand your point. In my case, the SE were completely overwhelming the benefits, so not worth it in the long run. Kind of like some people's experience on Trobalt, I suppose. Again, gender, physiology, size, etc. . . all may play a role. Ta!

It's cool. I'm sure when Autifony comes out it'll treat both.

 

[snow86]

emotional lability, and sense of despair and hopelessness.

@Zimichael

did you get that too? all that emotional unstability?

I wanted to try it soon, but my extreme T and H already come with depression and enough of hopelessness.
Maybe just the right drug to push you off the cliff...

 

[Danny Boy]

@Zimichael

did you get that too? all that emotional unstability?

I wanted to try it soon, but my extreme T and H already come with depression and enough of hopelessness.
Maybe just the right drug to push you off the cliff...

Suicidal ideation is a side-effect of most epileptic medication. Oddly enough, I never got that as a side-effect, but I guess as long as my tinnitus/not having hyperacusis, is low, I don't want to die.

 

[Zimichael]

@Zimichael
did you get that too? all that emotional unstability?
I wanted to try it soon, but my extreme T and H already come with depression and enough of hopelessness.
Maybe just the right drug to push you off the cliff...

Snow...Yeah I saw that. Like has been on 100 other things I have tried over the years. Eventually even the best of hopes get just plain worn out and fit that description.

Thanks though...and as DB said, standard fare for just about every AED or psych'. med.

Z.

 

[Danny Boy]

Snow...Yeah I saw that. Like has been on 100 other things I have tried over the years. Eventually even the best of hopes get just plain worn out and fit that description.

Thanks though...and as DB said, standard fare for just about every AED or psych'. med.

Z.

You know it!

 

[erik]

Thanks for the continued updates. One size fits all definitely does not apply to H or T. Be safe!

 

[Danny Boy]

Thanks for the continued updates. One size fits all definitely does not apply to H or T. Be safe!

Agreed.

 

[slazien]

Hi all! I'm new to the forum so I just wanted to say hello

While cacually browsing Facebook I stumbled upon this:
http://www.drugs.com/newdrugs/fda-approves-spritam-levetiracetam-first-3d-printed-product-4240.html

Isn't it amazing? Just imagine printing a Keppra-like drug in your home

 

[zoid]

I've read through some threads about keppra and maybe I want to try it.

I have T since the second week of January (probably because of fireworks). A week later I also got H. It sounds like the dynamic range of my ears is reduced a lot. Some days it seems that all sounds come in at the same level, walking in public is horrible. Also the sound of my crying daughter makes my ears rumble, especially in the morning. During the day I get some ear pain and my extreme sensitivity softens it seems.
However it feels like my H is slowly getting better and there are some really good days but I feel like it can improve more. Writing this I'm not sure if the side effects of keppra will justify the benefits if there are any. Also I'm not sure It's worth the effort, I don't think my docter will give it to me and because I'm in the Netherlands I cannot buy it myself.

How many people on this forum have tried it? I only found 4 or 5 people or so, and it only worked on Danny and Viking? Are there success stories from people who tried it with noise induced H?


Thanks in advance!

 

[Geo]

I've read through some threads about keppra and maybe I want to try it.

I have T since the second week of January (probably because of fireworks). A week later I also got H. It sounds like the dynamic range of my ears is reduced a lot. Some days it seems that all sounds come in at the same level, walking in public is horrible. Also the sound of my crying daughter makes my ears rumble, especially in the morning. During the day I get some ear pain and my extreme sensitivity softens it seems.
However it feels like my H is slowly getting better and there are some really good days but I feel like it can improve more. Writing this I'm not sure if the side effects of keppra will justify the benefits if there are any. Also I'm not sure It's worth the effort, I don't think my docter will give it to me and because I'm in the Netherlands I cannot buy it myself.

How many people on this forum have tried it? I only found 4 or 5 people or so, and it only worked on Danny and Viking? Are there success stories from people who tried it with noise induced H?


Thanks in advance!

sounds like youre improving just take more time and see if you get better.. if it becomes to extreme than keppra sounds like a good alternative

 

[jeannie]

I believe one female on here was lakegirl that tried potiga?? Yes then she disappeared

 

[Zimichael]

OK, this is going to be a bit tricky, as I am doing a "joint" Keppra report from myself @Zimichael and @svintegrity. We have been in close contact privately due to our Keppra connection, etc. We both felt like we had a duty to the thread to let others know what was going on (as that is a big part of what TT is all about), however, @svintegrity is still too trashed to do it...and so asked me to, as I am marginally more capable. Sort of. Maybe. I think I am getting over the effects of the drug now a week later...but no bets yet.

Here's the short report: Coming off Keppra may not be at all easy and no bloody picnic at all!!!

I mean think about it. Keppra is another of the general "anti-seizure" group of meds...just like Clonazepam! Yeah, a Benzo...and the only med I am still on, as it is absolute hell on wheels for me to try and get off. Rumour has it, coming off benzos is harder/longer/more traumatic than coming off heroin! I don't know, but it is well know to be extremely crappy dropping off Benzos if on them for some time...Just saying. There may be parallels with these "psych meds" for some of us.

For @svintegrity and myself, coming off Keppra is much harder than getting on it...and for me even up to that 2,000 mg/day total. We both quit at the beginning of this past week, and both went into immediate hell. We have a new acronym for it = CBBS, "Complex Battered Being Syndrome."

Yes, I said a week ago that I was going to just finish up my pills at the new low taper dose I was on of 250 mg BID = 500 mg total/day. But by Sunday last I was considering this from @snow86 to me...

"snow86, ...did you get that too? all that emotional unstability?
I wanted to try it soon, but my extreme T and H already come with depression and enough of hopelessness.
Maybe just the right drug to push you off the cliff...

Well, seems to me that I had been getting even more and more wigged out and desperate feeling (which I already have enough of) all the prior week as had tapered off to that 250 mg BID dose for past 5 days...So Sunday night last, I just stopped taking any more on a whim. Thus a week off it now, and @svintegrity stopped just after, as side effects even at super low dose were just too much:
I was on a no-dose, low-dose so just quit. But for a drug sensitive person, I probably had reached dose accumulation, and I imagine my cells continue to seek it out. Probably should have tapered more??? How do you taper from 125mg. for a full week, when most people take 2000+ mg.?!!? I thought I HAD tapered. Your symptoms sounds so very similar to mine though. Already battered + Keppra withdrawal = Feel like shit!

Well our "shit" got even shittier as the week continued...Very, very shitty. And I have a lot experience with this kind of meds crap...We both do. Severe 'not wanting to crawl out from a hole forever' is an understatement.

We had both considered Keppra initially to be a sort of "namby-pamby" or "twinkle floss easy peasy" drug...and zooming up to my test dose was no biggie.
Deceptive.
Coming OFF it may be where the crunch is. Especially for those with a "delicate disposition", or already heavily sick of CBBS.

Indeed it may have helped lower H with @svintegrity but there are a number of other wild variables flying around. For sure side effects made it non feasible. For me, it did nothing re my T and H.

End of report...and sorry I did not do so earlier, but was just too fucked over to care. Part of the picture I am describing. And I am not into tons of questions on this OK, still had to push myself hard to get back here and log in. But 'duty' called.

Best, Zimichael, and svintegrity.

 

[Danny Boy]

OK, this is going to be a bit tricky, as I am doing a "joint" Keppra report from myself @Zimichael and @svintegrity. We have been in close contact privately due to our Keppra connection, etc. We both felt like we had a duty to the thread to let others know what was going on (as that is a big part of what TT is all about), however, @svintegrity is still too trashed to do it...and so asked me to, as I am marginally more capable. Sort of. Maybe. I think I am getting over the effects of the drug now a week later...but no bets yet.

Here's the short report: Coming off Keppra may not be at all easy and no bloody picnic at all!!!

I mean think about it. Keppra is another of the general "anti-seizure" group of meds...just like Clonazepam! Yeah, a Benzo...and the only med I am still on, as it is absolute hell on wheels for me to try and get off. Rumour has it, coming off benzos is harder/longer/more traumatic than coming off heroin! I don't know, but it is well know to be extremely crappy dropping off Benzos if on them for some time...Just saying. There may be parallels with these "psych meds" for some of us.

For @svintegrity and myself, coming off Keppra is much harder than getting on it...and for me even up to that 2,000 mg/day total. We both quit at the beginning of this past week, and both went into immediate hell. We have a new acronym for it = CBBS, "Complex Battered Being Syndrome."

Yes, I said a week ago that I was going to just finish up my pills at the new low taper dose I was on of 250 mg BID = 500 mg total/day. But by Sunday last I was considering this from @snow86 to me...

"snow86, ...did you get that too? all that emotional unstability?
I wanted to try it soon, but my extreme T and H already come with depression and enough of hopelessness.
Maybe just the right drug to push you off the cliff...

Well, seems to me that I had been getting even more and more wigged out and desperate feeling (which I already have enough of) all the prior week as had tapered off to that 250 mg BID dose for past 5 days...So Sunday night last, I just stopped taking any more on a whim. Thus a week off it now, and @svintegrity stopped just after, as side effects even at super low dose were just too much:
I was on a no-dose, low-dose so just quit. But for a drug sensitive person, I probably had reached dose accumulation, and I imagine my cells continue to seek it out. Probably should have tapered more??? How do you taper from 125mg. for a full week, when most people take 2000+ mg.?!!? I thought I HAD tapered. Your symptoms sounds so very similar to mine though. Already battered + Keppra withdrawal = Feel like shit!

Well our "shit" got even shittier as the week continued...Very, very shitty. And I have a lot experience with this kind of meds crap...We both do. Severe 'not wanting to crawl out from a hole forever' is an understatement.

We had both considered Keppra initially to be a sort of "namby-pamby" or "twinkle floss easy peasy" drug...and zooming up to my test dose was no biggie.
Deceptive.
Coming OFF it may be where the crunch is. Especially for those with a "delicate disposition", or already heavily sick of CBBS.

Indeed it may have helped lower H with @svintegrity but there are a number of other wild variables flying around. For sure side effects made it non feasible. For me, it did nothing re my T and H.

End of report...and sorry I did not do so earlier, but was just too fucked over to care. Part of the picture I am describing. And I am not into tons of questions on this OK, still had to push myself hard to get back here and log in. But 'duty' called.

Best, Zimichael, and svintegrity.

I seriously must be immune to that? I went off keppra for 1 whole week and noticed no changes in my behaviour. Very strange.

 

[skoupidis]

I went off Keppra with no problems at all. Actually, as I continue to be having good and bad days as before, I still say that it is inconclusive whether it helped me at all.

 

[Danny Boy]

I went off Keppra with no problems at all. Actually, as I continue to be having good and bad days as before, I still say that it is inconclusive whether it helped me at all.

Sadly we can't do double blind trials.

 

[skoupidis]

Sadly we can't do double blind trials.

Well, I took it for almost 3 months. It should show definite improvement. It proved to be not an innosent drug in the end, sideffects wise...
I would only trust such drugs if they showed real healing properties.

 

[Street Spirit]

OK, this is going to be a bit tricky, as I am doing a "joint" Keppra report from myself @Zimichael and @svintegrity. We have been in close contact privately due to our Keppra connection, etc. We both felt like we had a duty to the thread to let others know what was going on (as that is a big part of what TT is all about), however, @svintegrity is still too trashed to do it...and so asked me to, as I am marginally more capable. Sort of. Maybe. I think I am getting over the effects of the drug now a week later...but no bets yet.

Here's the short report: Coming off Keppra may not be at all easy and no bloody picnic at all!!!

I mean think about it. Keppra is another of the general "anti-seizure" group of meds...just like Clonazepam! Yeah, a Benzo...and the only med I am still on, as it is absolute hell on wheels for me to try and get off. Rumour has it, coming off benzos is harder/longer/more traumatic than coming off heroin! I don't know, but it is well know to be extremely crappy dropping off Benzos if on them for some time...Just saying. There may be parallels with these "psych meds" for some of us.

For @svintegrity and myself, coming off Keppra is much harder than getting on it...and for me even up to that 2,000 mg/day total. We both quit at the beginning of this past week, and both went into immediate hell. We have a new acronym for it = CBBS, "Complex Battered Being Syndrome."

Yes, I said a week ago that I was going to just finish up my pills at the new low taper dose I was on of 250 mg BID = 500 mg total/day. But by Sunday last I was considering this from @snow86 to me...

"snow86, ...did you get that too? all that emotional unstability?
I wanted to try it soon, but my extreme T and H already come with depression and enough of hopelessness.
Maybe just the right drug to push you off the cliff...

Well, seems to me that I had been getting even more and more wigged out and desperate feeling (which I already have enough of) all the prior week as had tapered off to that 250 mg BID dose for past 5 days...So Sunday night last, I just stopped taking any more on a whim. Thus a week off it now, and @svintegrity stopped just after, as side effects even at super low dose were just too much:
I was on a no-dose, low-dose so just quit. But for a drug sensitive person, I probably had reached dose accumulation, and I imagine my cells continue to seek it out. Probably should have tapered more??? How do you taper from 125mg. for a full week, when most people take 2000+ mg.?!!? I thought I HAD tapered. Your symptoms sounds so very similar to mine though. Already battered + Keppra withdrawal = Feel like shit!

Well our "shit" got even shittier as the week continued...Very, very shitty. And I have a lot experience with this kind of meds crap...We both do. Severe 'not wanting to crawl out from a hole forever' is an understatement.

We had both considered Keppra initially to be a sort of "namby-pamby" or "twinkle floss easy peasy" drug...and zooming up to my test dose was no biggie.
Deceptive.
Coming OFF it may be where the crunch is. Especially for those with a "delicate disposition", or already heavily sick of CBBS.

Indeed it may have helped lower H with @svintegrity but there are a number of other wild variables flying around. For sure side effects made it non feasible. For me, it did nothing re my T and H.

End of report...and sorry I did not do so earlier, but was just too fucked over to care. Part of the picture I am describing. And I am not into tons of questions on this OK, still had to push myself hard to get back here and log in. But 'duty' called.

Best, Zimichael, and svintegrity.

WTH??! I thought @svintegrity was doing well on Kep? Sorry to hear this...dammit is there any drug good for H and RT? Major major letdown!!!!

 

[Street Spirit]

Well I am med sensitive and now wanting off c and taperig starting tomorrow since I just got my 3 mth supply. .but was planning on Keppra in 2 weeks...ughhhhhh....I don't know anymore...

 

[dan]

I seriously must be immune to that? I went off keppra for 1 whole week and noticed no changes in my behaviour. Very strange.

Lol Danny ur a bloody alien. You were on Trobalt, Keppra and Campral at the same time!!! Hahaha

 

[Geo]

WTH??! I thought @svintegrity was doing well on Kep? Sorry to hear this...dammit is there any drug good for H and RT? Major major letdown!!!!

from what she told me it helped a lot.. it almost trashed her whole H to where it doesnt affect her anymore..

 

[Street Spirit]

from what she told me it helped a lot.. it almost trashed her whole H to where it doesnt affect her anymore..

ok i see that now but she is having hell of time getting off.

 

[Danny Boy]

ok i see that now but she is having hell of time getting off.

Why is it so hard to get off of? I had no problems? I went cold turkey and had no issues.

 

[Street Spirit]

Why is it so hard to get off of? I had no problems? I went cold turkey and had no issues.

Some people are just med sensitive. ..AED's should be tapered if on for some time..

and in your case, I don't know lol

 

[Street Spirit]

Lol Danny ur a bloody alien. You were on Trobalt, Keppra and Campral at the same time!!! Hahaha

Explains ALOT...ahahhahah..


Danny Boy..I don't know man..crazy...though not unheard of..people with TN take many, many drugs at same time, and it's amazing they can walk. ..many cannot talk...the pain won't kill them but the drugs surely will.

 

[Nucleo]

Couldn't one just stay on Keppra forever though? It seems to me the symptoms might come back, and from what I'm reading, they get much worse this time around.

 

[Street Spirit]

Couldn't one just stay on Keppra forever though? It seems to me the symptoms might come back, and from what I'm reading, they get much worse this time around.