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I took 30 mg pills orally, but it didn't do a lot from what I remember. I tried it topically because of a few articles I read around that time, like this, plus a few others out there: Topical Ambroxol 20% for the Treatment of Classical Trigeminal Neuralgia - A New Option? Initial Clinical Case...

Has anyone ever tried Ambroxol applied topically around the ear and trigeminal area? I tried it a few times orally when I first got some but it had no real effect, but crushing up the pill instead and mixing it with skin cream and applying directly to the areas of pain did seem to help with...

Good luck with it. Would you mind asking them the burning question about the reversibility of the surgery (in the case that it did not work, and a drug was released in the future that required a semi-permeable round window for successful diffusion), I would really appreciate it. I have seen it...

As long I could have music and noise back in my life again and that noise was not causing me pain while listening to it (or after / delayed) then yes I'd take anything as long as it continued to work. I've tried taking benzos and some other stuff before and giving music a go but it didn't work...

I have got some but not tried it yet because I'm not in that much pain right now, bored shitless in silence though because every time I test my ear I know I'm not going to get away with it. I don't need pain killing drugs, I need a drug that stops or disables the pain-causing mechanism. Praying...

That's interesting @grate_biff, I always thought you had face pain with your noxacusis, and the way you describe your tinnitus is the way mine feels after a setback, screaming, but mine goes it goes hand in hand with facial and ear pain. I also hope you find something to help you one day.

I don't know but my symptoms range from ear fatigue/reactive tinnitus through to setback pain which is on a different level completely. Although it's kind of a scale, it isn't gradual, there's a trigger point along the scale where a switch gets tripped and the symptoms become infinitely worse...

From what Ive read I think a good theory is cochlear inflammation that stimulates the trigeminal nerve endings that are actually in the cochlea. The trigeminal nerve apparently links back to the dorsal cochlea nucleus and this fluctuating level of inflammation is what could be causing the excess...

I'm a bit hazy on this, haven't done much on it for a while but the conclusion I came to is that FX-322 could work as long as it either, a) fixed wherever rogue ATP / cytokines etc. were being released from (so if the broken ATP release site was replaced by PCA process then it would fix it but...

I've been reading some threads from around 2015 / 16 when quite a lot of people were trial treating with Trobalt and something else called Flupirtine. They seem to be the only 2 potassium channel drugs I can find that fall under a very specific subgroup called 'Neuronal potassium channel...

@Born To Slay, @Marin, thanks, that's very helpful. I'm hopeful for the Xen drugs as I understand they are reformulations of Trobalt. When I started looking for Tegretol but ended up with Trileptal I didn't realize they were also epilepsy drugs drugs at first, but when I found out they were I...

Hi @Marin, I got some Trileptal recently (28 days 600 mg per day). I haven't tried it yet but I can't find anything to suggest it's something that can be taken as needed and it looks like a long term drug that needs to be increased over 4 weeks to get to recommended dose of 2400 mg. Do you know...

Ah, yeh mine might have been a bit different. They were coming through slightly angled and were partially out but still had not quite finished but were crushing the other teeth together which is why I had to have them out. There was enough out for the dentist to get a grip of them anyway.

@weab00, I had this done when I was your age for the same reason, all 4 wisdom teeth (no noxacusis at the time though). After the anesthetic injections there was no drilling, the guy just pulled them straight out with dental pliers (one side top and bottom first, then the other side 3 weeks later).

Yes I think the initial instant pain is cochlear related as well because it happens in real time as noise hits and is frequency specific and then if it continues it becomes apparent that the middle ear becomes involved as 'some signal' gets relayed back to the middle ear due to the cochlea...

I struggled to figure out the best way of writing this for a while, but I imagine a (not that unrealistic) scenario where all regenerative drugs either fail or more likely take too long to be released for many of us, but that Ebselen / SPI-1005 and a reformulation of Trobalt DO get released...

I'm losing hope

Good find, blows my latest theory to shit, nice to know this kind of testing is being done though. I think I must have massive IHC damage and some OHC damage but I still can't understand how good my audiogram is up to around 12.5 kHz. It must have something to do with the EHF loss (or any dips...

I'm focusing lately on how OAE tests could be useful to measure improvements in the inner ear that aren't detectable on an audiogram. The theory applies to 2 sets of criteria as below. (Originally roughly outlined on FX-322 thread but I've come to realize that this also applies here to one of...

I hate the idea of the blocking the round window without any good indication that it can be successfully reversed if need be (I've been trying to find out for a while, even Silverstein Institute never got back to me when I emailed them twice about reversal possibility). There's enough of a...

You're on the same page as me and that's why I wonder about the OAE test that I brought up yesterday. Bear with me - I'm going to try and do with graphics what @Zugzug does with math. 1. Healthy hearing (healthy IHCs, OHCs, afferents, synapses): Self explanatory, good OAE test, good audiogram...

Regarding the +-10 dB margin for error, would it not depend on the average across both cohorts though? On a case by basis the margin of error of +-10 dB might be meaningless but if the general trend was that the drug treated cohort shifted to the + side of the margin for error post trial while...

Yeah, and what's funny about that is that they are the same people who give the OAE tests which can indicate damage in a hyperacusis complainant who has good hearing. My hearing was apparently fine according to my audiologist. My 3 standard tests over the last 3 years also all look well within...

As long as absolutely none of the placebo group improves and that the FX-322 group does improve. I reckon if just one of the placebo patients also improves it will cast a huge doubt over not just these Phase 1bs but also Phase 1/2. I thought about that as well. Maybe IHCs and OHCs are both...

I completely agree with you, but I dream.

This is why I'd love to see a spin off trial on people who are so debilitated they can't even leave the house or function around anything that involves noise, yet have good audiograms. Something else is going on. Yes, it would be trial treating but the results could potentially be more explosive...

@Zugzug, thanks, I didn't realize that study was non placebo controlled. It looks like FX-322-112 is though but I can't find whether or not FX-322-113 is placebo controlled or not, do you know? All I can find is that it has a similar study design as ARHL study. (Leads me to believe also double...

Yes, and not just lied dramatically but also happened to ALL get into the non-placebo group, right? I'm really hoping that there are zero responders in the Phase 1b placebo groups, not a single one (along with continued improvement in WR scores for FX-322 groups of course). The likelihood that...

Thanks @Diesel, great observation. They would have had so much time to prepare for that presentation if they had known. Plus the continued extra backing, it looks like confidence in FX-322 was there right up to the last minute and the extra trials were started with genuine belief in the product...

@Diesel pls can you check my last post (forgot to tag you). Need your analysis on first point. Tx

Re the additional Phase 1b trials that were announced quite out of the blue if remember correctly - I wonder if these studies were made up quickly due to early indication that Phase 2a was not doing well and Frequency Therapeutics needed something to reinforce original trial results and keep an...

I just heard it properly. Phase 2a and 1b shows nothing in EHF. It's all based on speech recognition and WR only,

I was wondering where this doubt comes from. I thought they were talking about groups as in just Phase 2a subgroups? FX-322 vs placebo etc. instead of groups as in both study groups? I may well have missed the details as I was struggling.

I was having trouble with a lot of it myself. I actually missed that bit in the presentation but it's been mentioned above in the thread a couple of times.

The Phase 2a study seems null and void because of bias, fair enough, but what's the deal with the Phase 1b study because on the one hand it looks like early results for a third of patients showed 10% or greater improvement in WR, but on the other hand also apparently showed no changes in EHF...

@Marin, I've come to the conclusion that stimulating the area is dangerous when it is highly sensitized (I think in terms of trigeminal nerve area rather than middle ear although anything that could stimulate a possibly damaged tensor tympani could apply as well). A couple of years ago I was...

Exactly @Aaron91. If I'm right in thinking that ribbons, along with extra, enlarged ribbons die along with an OHC when an OHC dies then it would be good to know that these lingering dodgy extra ribbon OHCs are damaged and can have PCA activated by FX-322. If they are skipped by FX-322 because...

To @__nico__, @roy1159, and @AliasM (& you all), the last few pages have been tough to read as some seem so close to the edge. Keep going. A treatment for this does not need to be perfect, I don't expect a perfect cure anyway and could live with a lot of my symptoms, as long as I could listen...

This is maybe a golden find @Aaron91. It helps me join 2 maybe major dots together in my own theory. I've been working on something as you know recently and spent a long time focusing purely on the mechanism of the tip link MET channels. In normal hair cell stereocilia there's a consistent...

I see what you mean about the protection. I guess in the early days it's hard to gauge but after a while I learned by trial error what I could get away with and not. One example is when I'm bad I know I'm bad because I can't leave my bed, then eventually I can do things with Peltors and earplugs...

You're very welcome, and thanks for all your help in the past. Thinking about it I can see these all being variable factors which is why the symptoms vary so much. Level of cochlea 'noxacusis causing' damage Level of cochlea inflammation Level of self control around noise (I only just thought...

I spent a long time trying to work this out as well because it quickly dawned on me how crap and effectively useless LDL tests are as there's such a huge sliding scale of symptom severity and all that test does is take a snapshot somewhere on that scale. I came to this conclusion. Firstly...

Good question @Zugzug, but no it wasn't like that because I was bracing myself before it began anyway (with the right ear) which was OK, more than tolerable before switching to the left and the first 5 or 6 frequencies in the left ear were comfortable enough and noticeably more dull than the...

I had an Ultra High Frequency audiogram done and the results were more or less what I expected and also threw up a caveat I was hoping for. I’d like to share for analysis on one of the current theories (below). @FGG @Diesel @Aaron91 @serendipity1996 This is an overview of my symptoms...

I've read a lot of your posts lately and really feel for you. A concern I've always had is the thought of having even more problems on my plate in addition to the hearing issues. Other life problems do pop up and either last a while, get dealt with however slowly, resolved, or just accepted etc...

I have had so many thoughts of suicide over the last 4 years and not just suicide but fear that I'm dying anyway, my health seems to be collapsing in on me and I might not even need to commit suicide. That goes full circle and scares me though because in reality I don't want to die, I want to...

Thanks for clearing that up, and I'm really sorry to read about your recent symptoms.

I hope Ebselen does well. It was bad news about Otividex Phase 3 failing again and I sort of have this drug in the same category although they are different drugs. Could the placebo effect also be similar for the SPI-1005 Meniere's trial? And fail in the same way that Otividex did? @FGG?

Bad news about Otividex trial failing again, I really hoped it would pass because this makes me nervous for SPI-1005 as I kind of understand they are for similar purposes although different drugs. Could the placebo effect also be similar for the SPI-1005 Meniere's trial? It's a pill rather...

I had a setback last week with all the usual elements I suffer from. All started with a tell tale 'stab' in the ear from talking on the phone. Then gradually I feel the building up sensation of the pain I know is on the way. The next day the raw, open wound, ulcerated feeling pain is randomly...

I just wanted to bump this question for anyone trying to find out about this surgery. I still can't get this answered to any degree that gives me any confidence.

I've started reading a bit more into this, one thing really confuses me though. The cochlear implant seems to get inserted into the Scala Tympani (the lower tunnel) and not the Scala Media (the middle tunnel where the hair cells are). It seems like it would be difficult for the implant to damage...

Good thread and well timed, my thinking is steering the same way recently. As we know the extra OHC ribbons research means that an OHC has to be present for this to even happen. I'm just starting to wonder if once a type II is sensitized with an intact OHC with extra ribbons, the OHC is now...

Just to add, I believe this does naturally happen anyway as noise tolerance does tend to recover after each setback, even if it takes months it does generally seem to be an upward trend until the next setback. I hope that a permanent / manageable fix to the underlying issue would mean a...

I still hope that this threshold would recover over time once the underlying lying cochlear problems were fixed. If it didn't though then yeh cutting it would be a last resort.

Every theory seems to lead back to needing to take care of the sensitized type IIs above all else for noxacusis. The only other hope I've got is that ATP leakage is playing a huge part in it and can be stopped somehow. I know that this set of circumstances would probably be so unlikely anyway...

Yeh it seems pretty obvious now doesn't it that there has to be an OHC there for the extra ribbons synapses to even happen (for type IIs). With the ATP / dead hair cell route though, only based on a few diagrams I've found and I'm trying to find more to help back it up, it appears that type II...

I've been thinking about this from the OHC perspective where the ribbon synapses increase in number upon noise trauma, and how FX-322 could be useful for this. The extra ribbons are part of the the actual OHC, I understand. That would suggest that OHCs have to still be intact for this route of...

I had a setback last night after doing quite well for a few weeks, just hope it's not a bad one. I'd do anything to try this stuff right now.

Yeh, it makes me wonder that although the insertion of a cochlear implant is obviously very damaging to what's left of natural 'good' hearing mechanisms, it may also be wiping out the 'bad' mechanisms of hyperacusis, maybe noxacusis as well. I'll be interested to see more of these sort of cases...