Levetiracetam (Keppra) Worked for My Hyperacusis

[AverageJoe12]

This Monday I'm having a consult with a pain specialist to discuss some papers about noxacusis I've sent him. I'm currently on Clonazepam but without much effect, so in this meeting other medication might be on the table as well.

In our first meeting he also mentioned Pregabalin and Tegretol as possible treatment options, but I'd like to discuss other drugs with him as well.

Would you please be so kind as to answer to the questions I asked above? It could help all of us.

Please keep us posted on the pain consult. I have an appointment with a neurologist here in NJ, USA next Wednesday and will let you know if I get any recommendations for this stabbing pain in my right ear.

Have you tried any medications yet?

I've only tried Fluvoxamine and Mirtazapine so far and both have helped me to stop tailspinning anxiety wise and going into immediate fight or flight mode with sound. That's a good start because my body has no chance of healing when I'm in panic mode for all waking hours, but this combo hasn't necessarily helped the acute pain from high pitch or high volume sounds. For context, my pain hyperacusis is only in my right ear and it was a slow onset from mild discomfort for 5 months after a night club outing in February '23 to actual pain the last 6 weeks.

 

[grate_biff]

This Monday I'm having a consult with a pain specialist to discuss some papers about noxacusis I've sent him. I'm currently on Clonazepam but without much effect, so in this meeting other medication might be on the table as well.

In our first meeting he also mentioned Pregabalin and Tegretol as possible treatment options, but I'd like to discuss other drugs with him as well.

Would you please be so kind as to answer to the questions I asked above? It could help all of us.

I really got nothing to add, besides what I have already said.

I´m a really bad test-subject, since I´m deep in hellish benzo withdrawal.

I suspect Tegretol worked so well because it has affinity on the GABA-A receptors. It was very anxiolytic as well.

Stay away from benzos. They are the devil of all meds. They will suck you in, chew you up and spit you out.

I hope my English is OK

 

[grate_biff]

I have become interested in a supplement called Agmatine, as it is supposed to affect ATP-sensitive K+ channels. It is mentioned on the previous page of this thread as well. Weird coincidence.

It is interesting because ATP is supposed to be the culprit for sensitizing the type ll afferent nerve fibers, resulting in noxacusis.

It would be nice to know which K+ channels it affects though.

 

[StoneInFocus]

Please keep us posted on the pain consult. I have an appointment with a neurologist here in NJ, USA next Wednesday and will let you know if I get any recommendations for this stabbing pain in my right ear.

I am interested to hear what the neurologist has to say. I'll keep you updated on the consult.

Have you tried any medications yet?

The drugs I've tried so far are:

• Ambroxol
• Flupirtine
• Cannabidiol isolate
• Cinnarizine
• Flunarizine

I haven't noticed much effect of these drugs on acute auditory pain. Could be different for other people though.

I've only tried Fluvoxamine and Mirtazapine so far and both have helped me to stop tailspinning anxiety wise and going into immediate fight or flight mode with sound. That's a good start because my body has no chance of healing when I'm in panic mode for all waking hours, but this combo hasn't necessarily helped the acute pain from high pitch or high volume sounds. For context, my pain hyperacusis is only in my right ear and it was a slow onset from mild discomfort for 5 months after a night club outing in February '23 to actual pain the last 6 weeks.

May I ask how much do you use hearing protection now?

If your hyperacusis symptoms only started a couple of months ago, I think you have a good chance of recovering with just adequate amounts of silence.

Any type of digital sound is especially dangerous, possibly because the range of frequencies that you are exposed to is greater.

 

[StoneInFocus]

I really got nothing to add, besides what I have already said.

I´m a really bad test-subject, since I´m deep in hellish benzo withdrawal.

I suspect Tegretol worked so well because it has affinity on the GABA-A receptors. It was very anxiolytic as well.

Stay away from benzos. They are the devil of all meds. They will suck you in, chew you up and spit you out.

Thanks for the heads up. The pain specialist wanted to keep me on Clonazepam for a couple of weeks but I'm definitely skeptical now after reading so many horror stories.

I am sorry but I tried to look through your post history and I could not find which dosage of Tegretol you used, after how many days it took effect and whether you developed some sort of tolerance to its alleviating properties.

I hope my English is OK

It was a little rough around the edges but with some effort on my part I've managed to decipher your message

I have become interested in a supplement called Agmatine, as it is supposed to affect ATP-sensitive K+ channels. It is mentioned on the previous page of this thread as well. Weird coincidence.

Maybe you could check out Nifedipine, it is a sodium channel blocker like Tegretol, and it was shown to inhibit ATP induced inward current in Hensen's cells and protect against noise-induced hearing loss in guinea pigs:

ATP (0.1–10 μM) reduced the potassium current (IK+) in the majority of the recorded Hensen's cells (21 out of 25 cells). An inward current was also induced by high concentrations of ATP (100 μM to 10 mM), which was reversibly blocked by 100 μM suramin (a purinergic antagonist) and blocked by nifedipine (an L-type calcium channel blocker). After the cochleas were perfused with artificial perilymph solutions containing nifedipine and exposed to noise, the amplitude increase in the compound action potential (CAP) threshold and the reduction in cochlear microphonics was lower than when they were exposed to noise alone.

I initially asked my GP to prescribe me Nifedipine but he wouldn't do it, so I had to settle for Flunarizine.

 

[grate_biff]

after how many days it took effect

200 mg x3.

Very quick effect. After 1-2 days (for me, meds only take effect after sleep) my tinnitus was gone and stayed gone for 3 days. It came back, while still on the drug. Noxacusis about 70-80% better.

People seem to reach tolerance at some point.

Drugs.com is your friend to learn of other people´s experiences and drug interactions.

But bear in mind, it´s a tool, not the holy truth!

I´ve learned that sometimes it lacks information and even gives misinformation (interactions).

And like Cosmo Kramer once said: "What cures us, can make us ill!"

 

[Lucifer]

200 mg x3.

Very quick effect. After 1-2 days (for me, meds only take effect after sleep) my tinnitus was gone and stayed gone for 3 days. It came back, while still on the drug. Noxacusis about 70-80% better.

Which one works better for your noxacusis, Tegretol or Keppra?

Did you ever try Gabapentin?

 

[MFM]

Very quick effect. After 1-2 days (for me, meds only take effect after sleep) my tinnitus was gone and stayed gone for 3 days. It came back, while still on the drug. Noxacusis about 70-80% better.

A 70-80% improvement in noxacusis seems pretty significant, why did you stop taking it?

 

[AverageJoe12]

I am interested to hear what the neurologist has to say. I'll keep you updated on the consult.

The drugs I've tried so far are:

• Ambroxol
• Flupirtine
• Cannabidiol isolate
• Cinnarizine
• Flunarizine

I haven't noticed much effect of these drugs on acute auditory pain. Could be different for other people though.

May I ask how much do you use hearing protection now?

If your hyperacusis symptoms only started a couple of months ago, I think you have a good chance of recovering with just adequate amounts of silence.

Any type of digital sound is especially dangerous, possibly because the range of frequencies that you are exposed to is greater.

I'm still getting advice to not over-protect from ENTs and audiologists, but my hyperacusis went from just loudness/annoyance to pain over the course of 5 months while I was inadvertently sort of following their advice (i.e. trying to live a normal life and only plugging my right ear for bars/restaurants/flights). That didn't work too well so I had to take a leave from work and put a complete stop to my social life.

Since the onset of noxacusis 6 weeks ago, I am plugging my right ear with a Mack's brand foam earplug when I leave the house and enter the public arena. I also need it in the house to vacuum, do the dishes, and use certain kitchen appliances. I can handle driving and the grocery store with a plug, but even that foam plug wasn't enough for a restaurant outing I attempted 2 weeks ago. Before starting Mirtazapine (7.5 mg at night) and Fluvoxamine (50 mg day and night), creak sounds in the walls and the air conditioner going on were sending me into an absolute tailspin and I was going down the road of using earmuffs. 3 weeks into using these medications, I'm no longer using earmuffs or having near constant sound-induced panic. I wish I could've got a doctor to prescribe me Clonazepam. I do have a Gabapentin script that I have not yet tried for this specific noxacusis issue. I was taking it for anxiety previously when my hyperacusis onset.

Can I ask you how you got hyperacusis? Do you have tinnitus as well? I was a drummer in my younger ears (31 yo now) and rarely used hearing protection. I've had clinical anxiety almost all my life and had tried psych meds but hadn't been on anything for years so the anxiety was badly managed. I was an Apple AirPods user as well. I was suffering from some pretty bad general fatigue and anxiety earlier this year (and had COVID-19 in January where I lost smell/taste for a few days) when a night club completely did me in in February. I woke up hungover, with tons of floaters in my vision, major light sensitivity for 4-5 weeks, tinnitus, and the beginnings of loudness hyperacusis (that has since morphed into pain hyperacusis). I still don't know if I should blame the night club, my pre-existing anxiety/fatigue, my taking Gabapentin and other psych meds earlier in my life or long COVID-19.

 

[grate_biff]

Which one works better for your noxacusis, Tegretol or Keppra?

Did you ever try Gabapentin?

I have never tried Keppra, even though I have a lot of it.

I am on Gabapentin now. 200-300 mg at lunchtime. I take it to try and ease benzo withdrawal.

It helps a little for both tinnitus and noxacusis, but again, I am a bad test subject because benzo withdrawal is the mother of making hyper-excitatory neurons playing havoc with the body, brain and ears.

A 70-80% improvement in noxacusis seems pretty significant, why did you stop taking it?

Because it is a strong inducer of the most common liver enzyme in our body. Meaning other meds metabolized by this enzyme stops working, or you have to increase the dose to ridiculous amounts.

It is such a strong inducer, it actually fucks up its own metabolism. Thus, taking more of the drug could actually make it less potent. No wonder people become tolerant to it.

This is my take. I am not a doctor (even though, often being a doctor does not help).

 

[gameover]

I was a drummer in my younger ears (31 yo now) and rarely used hearing protection. I've had clinical anxiety almost all my life and had tried psych meds but hadn't been on anything for years so the anxiety was badly managed. I was an Apple AirPods user as well. I was suffering from some pretty bad general fatigue and anxiety earlier this year (and had COVID-19 in January where I lost smell/taste for a few days) when a night club completely did me in in February. I woke up hungover, with tons of floaters in my vision, major light sensitivity for 4-5 weeks, tinnitus, and the beginnings of loudness hyperacusis (that has since morphed into pain hyperacusis). I still don't know if I should blame the night club, my pre-existing anxiety/fatigue, my taking Gabapentin and other psych meds earlier in my life or long COVID-19.

So sorry. I'd blame the night club while you were weakened from COVID-19, etc. I guess history of noise exposure probably lowered your threshold.

The fact that you went from loudness hyperacusis to pain hyperacusis after "living normally" is terrifying. I am taking it pretty easy (at home on leave, limited car drives, walks in the woods) and thankfully have not developed pain, but have fleeting moments of burning sensation in the ears. It came months after the acoustic trauma. I am 8 months in.

In my opinion all the drugs you are taking is just playing with fire. Nobody knows what they do to tinnitus/hyperacusis. Mirtazapine has been reported to worsen/induce hyperacusis, while allegedly it is rare for it to make tinnitus worse. I am not a medical professional, so this is not a medical advice. It is just so disappointing how little medical professionals know about treating tinnitus and hyperacusis, not to mention noxacusis.

Good luck to you.

 

[StoneInFocus]

200 mg x3.

Very quick effect. After 1-2 days (for me, meds only take effect after sleep) my tinnitus was gone and stayed gone for 3 days. It came back, while still on the drug. Noxacusis about 70-80% better.

How long did you use Tegretol in total? Did you feel taking it protected you against setbacks?

Can I ask you how you got hyperacusis? Do you have tinnitus as well?

I developed chronic pain hyperacusis after digital noise exposure. It started when I went to a bar unprotected and they played loud music. I experienced a bunch more of setbacks as a result of digital sound exposure, listening to music specifically. In hindsight I would probably have recovered if I did not listen to music as much. After a year of suffering pain hyperacusis symptoms, because of a combination of drug use and an increasingly debilitating hyperacusis, I suffered from some sort of nervous breakdown. A few weeks later and my noxacusis became cemented. I started to protect myself 24/7, but two years later I'm still nowhere near recovered.

My core advice to you would be to get custom earplugs made for noisy situations, and stop listening to music no matter how softly.

 

[StringBean2023]

I'm new here & trying to understand what my ears are doing.

My GP believes I've had COVID-19, again (new strain) which apparently messes with your ENT. I reeled off some other symptoms I'm suffering & she is convinced it's COVID-19 related. She checked my ears, & she said they're clear, no issues @ all. Because of the COVID-19 which she feels I've had she's prescribed me antibiotics to try & clear out if there's anything on the middle / inner ear. I'm hopeful this will help because the ear pain I'm experiencing is annoying, & nauseating, not forgetting the tinnitus which I did momentarily have done relief this morning - it only lasted 5 minutes.

I've been reading through this thread & I'm very intrigued with the drugs & etc that's been mentioned. Are these drugs just available in the US, or can a GP prescribe in the UK too...?

 

[AverageJoe12]

So sorry. I'd blame the night club while you were weakened from COVID-19, etc. I guess history of noise exposure probably lowered your threshold.

The fact that you went from loudness hyperacusis to pain hyperacusis after "living normally" is terrifying. I am taking it pretty easy (at home on leave, limited car drives, walks in the woods) and thankfully have not developed pain, but have fleeting moments of burning sensation in the ears. It came months after the acoustic trauma. I am 8 months in.

In my opinion all the drugs you are taking is just playing with fire. Nobody knows what they do to tinnitus/hyperacusis. Mirtazapine has been reported to worsen/induce hyperacusis, while allegedly it is rare for it to make tinnitus worse. I am not a medical professional, so this is not a medical advice. It is just so disappointing how little medical professionals know about treating tinnitus and hyperacusis, not to mention noxacusis.

Good luck to you.

Yeah, I think I was on a knife's edge and the night club put me over the edge. I can say that after 6 weeks on the Mirtazapine and Fluvoxamine I am sleeping better and am less hopeless and suicidal. Maybe even a bit less phonophobic. When I reached the point of the slightest creak in the wall feeling as if it pierced my right ear, sending me into fight or flight, I knew I was in trouble. N=1 obviously, but I'm no worse off than I was prior to trying meds. I'm scared shitless to go back to work in an office environment, but I'll cross that bridge when I get there.

Best of luck to you as well. Keep up those walks in the woods. I find them to be peaceful as well.