Levetiracetam (Keppra) — Another Possible Potassium Channel Modulator?

Ooh @ErikaS - I am sorry. I know what you mean. You are stuck thinking is this just my body getting used to this new drug and things may get worse before it gets better and, if so, should I stay on it for a while longer, vs. is this going to worsen me - which is a risk none of us ever want to take. It’s a hard one to call in the absence of anyone else that is here actively on it at present.

Xx

 

It looks like @Viking's reactivity spiked the first couple of days too, but I believe theirs died down. Their loudness hyperacusis totally vanished too, oddly enough. But I get what you mean, I wish they were still on here. I'm sorry, I don't even know what to recommend. I've heard of supplementing NAC with new medications to lower the chance of spikes.

 

I am stopping the Keppra. I am honestly so let down and discouraged, but it’s how life has been for me the past 4 years, so not sure why I thought it would do for me what it did for a number of people.

What is very weird is it seemed to have a very similar if not the same negative effect that Flexeril did back in April. Both made my high-pitched electric hiss tone so intrusive and reactive, and am now dealing with “ts ts ts ts” electric crap mixed in just like I did following Flexeril. So I don’t know if either of these have any similar mechanisms, but they both are a no for me.

Trileptal did not make me worse, it actually gave me some of my best days in a row since my setback in April but that changed and I went back to baseline. My neurologist is out this week but hoping I hear back from him next week.

I/we need BHV-7000 or XEN1101 to trial.

 

I saw on TV Biohaven is recruiting for OCD patients. Not sure if it is the same drug.

 

Unfortunately not the same drug

 

I am still grieving over the fact that not only did trying Keppra not do anything for my reactivity, it actually made things notably worse in a matter of 3-4 days and by day 5 I was so afraid that I stopped. I wish the Keppra at least hadn’t done anything and then maybe upping the dose I could have gotten some relief or nothing, but to experience such awful reaction to it right away and feel like I couldn’t give it a good effort go at it? Ugh.

What I do find interesting is both @Danny Boy and @Viking experienced this amazing reactivity “cure” with Keppra after being on Retigabine. Maybe that was an important factor in some way. Like modulating the potassium channels first, then trying Keppra? I’m not sure. I just am having a hard time accepting my experience with it I guess.

 

Your tinnitus sounds similar to mine. Very difficult to handle every day.

I took Trobalt some years ago and it helped for a few hours after each dose. I stopped because of the side effects.

I have not taken Keppra since I don't have hyperacusis.

What helped me to some extent, was Escitalopram (Lexapro), 10 mg every day. Maybe it is placebo, maybe not. But after two years of tinnitus at a non-stop level of 10/10, along with high anxiety, Lexapro brought me some relief. I now have a cycle of 4-5 days of really bad tinnitus, and then 2-3 days of lower tinnitus. It is still hell on earth, but gives me some hours to breath.

It is not always the same. I can have periods of worse tinnitus of up to two weeks and lower tinnitus of up to five days. But I know that sooner or later, a better day will come.

If things get really bad, I take a really small dosage of Mirtazapine (Remeron) to get good sleep. And my tinnitus is usually lower the next morning.

It is all about managing the tinnitus. My best friends are crickets on my mobile.

 

Thank you for sharing this. With XEN1101, BHV-7000, and Dr. Shore's device all in the 2-4 year ballpark, I hope for both of us managing our tinnitus becomes a lot easier, and "hell on earth" becomes more like "wow this is actually livable and no longer hell".

 

This study is awesome. It is a fantastic discovery!

It really gives me hope because they are getting close to finding the cause of hyperacusis/noxacusis.

 

Hey Erika - I hope you're doing okay. Have you tried anything else to help with the reactivity/hyperacusis? I'm struggling immensely with hyperacusis (more so than tinnitus) and am just hoping to find a bit of relief.

 

@ErikaS, maybe Brivaracetam, a Keppra analog, is an option to try?

It binds to the SV2A protein with 20-fold greater affinity than Keppra and has less off-target effects. Like blockage L-type calcium channels, it should theoretically prevent OHCs from sending vesicles to type II afferents, although I'm not really sure if SV2A proteins are expressed in OHCs.

Maybe this article is of interest:

→ Brivaracetam extinguished allodynia in a murine mode of neuropathic pain

Would you ever give Keppra (Levetiracetam) or Briviact (Brivaracetam) a try?

I saw you did not have much success obtaining Nimodipine.

 

Thanks for the suggestion. These medications seem interesting, but they seem to have some serious side effects. I'm currently fighting naked. I take some painkillers every now and then. You might have noticed I'm not that active anymore on Tinnitus Talk. I'm keeping myself as busy as possible during the day, so I'm exhausted in the evening. I don't know how long I can keep this up. I'm even doing stuff I might regret, but sitting in a room and crying in a corner doesn't help either.