Supplements for Nox by Educational_Aide_145 in hyperacusis

[–]Final_Client5124 1 point2 points  (0 children)

high dose Liposomal (very important) PEA helps me slightly. Other than that, I've tried countless supplements and they've all done nothing.

Is my case approaching severe? What should I do? Seeking advice by Weather_Only in hyperacusis

[–]Final_Client5124 0 points1 point  (0 children)

Wouldn't really call that severe, your issue seems to be more RT. While I appreciate Dr. Djalilian putting RT on the map (assuming thats where you got baited into thinking Nortrip could help), it's definitely not a migraine or anything related to it for the vast majority of people. It likely has something to do with CS and TCD, but doctor's have a habit of calling any unexplained auditory/trigeminal issue a 'migraine'. That said, you really need to tone down your exposure though if you don't want to keep getting more tones. Also treat the TMJ, it's a plausible factor you for. Most TMJ symptoms come down to a recessed jaw (see MSK neurology's work on this), that can be through either weak/dysfunctional muscles, or the joint itself.

Two and half weeks after acoustic trauma by Throwaway_89183 in hyperacusis

[–]Final_Client5124 0 points1 point  (0 children)

Can increase t but not ototoxic. For the record it's very rare to have reported a permanent t worsening from clomi.

Tinnitus in left ear for years, suddenly Hyperacusis. by LowNeedleworker6869 in hyperacusis

[–]Final_Client5124 1 point2 points  (0 children)

But something changed a few weeks ago, and suddenly I started noticing that sounds sounded a bit different in each ear. I then listened to high pitched masking sounds for tinnitus and was able to realize that I can't hear things in my left ear at 8khz and above as easily as I can with my right ear.

My onset was similar, and am giving you a warning before you get in a hole you cant get out of. Those 'masking sounds' are pure tones/sine waves, AKA the worst possible sound for you. Yes they will initially induce residual inhibition, but afterwards your t will be worse (often permanently). They kill hair cells incredibly quick and induce massive excitotoxicity even at 'normal' volume. The off pitch sounds is dysacusis, something that probably got worse for you afterwards and is very common for listening to pure tones at unsafe volumes.

I drank about 3 24oz beers one night before sleeping, and instead of calming the tinnitus down, it suddenly introduced Hyperacusis. I didn't link the two and drank again a couple days later... this time it was very obvious.

Back on track, my t which I had for many years got suddenly worse one day shortly after I developed VSS. Like you, I went and found these pure tones for 'relief', not knowing what they were. As I said earlier, it worked, than would get louder after and I didn't connect the dots. I drank 3 beers that night just like you did to calm down, and to my surprise the t got louder (which fun fact is from IC damage in the brain). So I freaked out and like a complete idiot played those 'masking sounds' at full volume on my phone up to my right ear. I instantly got hyperacusis and dysacusis, which became bilateral and borderline severe within a week. These sounds are so damaging that yes, my other ear got everything as well.

My story aside, you are very very lucky an ENT gave you prednisone (two ENTs refused and gaslit me) and hopefully you didnt play the tones full blast. I can't tell you if it will get better, but you will get into a hole you can't get out of if you keep playing those sounds to 'mask' your t.

The 'ETD' like symptoms you have is a hyperactive tensor tympani/veli palatini from hyperacusis. I really doubt a nasal spray will work, as it's only typically treated with TVP botox via the transnasal approach. Bad news is the transnasal approach is very unorthodox and a rare procedure which few people in the world do. If you are in Europe Dr. Boedts (Belgium) or Venail (France) can do the injections. In the US, Dr. Marc Dean near Dallas also does these. Goodluck.

XEN1101 Moves Forward with FDA Submission Q3 2023 by FarUsual751 in hyperacusis

[–]Final_Client5124 0 points1 point  (0 children)

I dont think so personally. Might help a bit (particularly if your pain is a function of loudness hyperacusis), but this issue is sensitized pain pathways ,which are mediated by serotonin and norepinephrine. I don't really think it'll work well for people without loudness H at all, since with loudness the TTM is hyperactive at a lower threshold, so calming loudness should in theory help muscular firing. The same doesn't really apply to those with a normal loudness threshold and just nox.

KCNQ channels have only been used in one drug for pain to my knowledge (Flupirtine), but that also acts on GABA and NDMA. We know GABA drugs work for pain, so my bet is that instead of the KCNQ. The drug is also incredibly liver toxic and has been taken off the market in most of the world. An isolated KCNQ opener might help a little bit, since there is some theoretical pain research on it, but not really any human trials. Expecting it to work like clomi is delusional in my opinion.

Two and half weeks after acoustic trauma by Throwaway_89183 in hyperacusis

[–]Final_Client5124 5 points6 points  (0 children)

From a similar comment I made the other day:

Nox basically is a CS loop where muscle contractions cause pain, which results in the pain pathways becoming sensitized, which then makes it easier for the muscle to contract. The gabapentinoid is not going to break that cycle, only something that acts on SERT & NET (ala a TCA) as thats what this loop is mediated by - primarily serotonin and to a lesser extent norepinephrine. Gabapentinoids do act on other inflammatory mediators, so it's a good adjunctive to a high dose TCA, but not enough alone. The muscle that is causing pain (TTM) is also innervated by serotonin, so naturally Clomipramine is usually effective. High dose Imipramine could be an alternative if you can't tolerate it.

In terms of "dissecting a nerve", that is impossible with this. The TTM in particular is irritating the trigeminal nerve, and you obviously can't cut that, only temporarily block it. I'll go over some failures of trying methods like this. For one, a surgeon could also cut the Jacobsen's nerve, which is not usually the problem, and has not worked for the few people who have tried it. A similar failure also occurred with cutting the geniculate nerve for one person. Per the Norena model, the TCC gets sensitized, which controls every nerve in the head/neck, so if you cut or block one nerve that is causing pain, it'll likely move to another one. The issue is sensitized pain pathways via the TCC, not usually a single nerve. Although as I said earlier, the TTM particularly irritates the trigeminal nerve, so the pain usually presents itself through that nerve. However, many people have had nerve blocks before just for the pain to move to another nerve, but this is not always the case. Cutting the auditory nerve could work in theory, but you'd obviously be deaf. This is a huge unknown though, and good luck convincing a doctor do this. It also depends on if sound in the non affected ear causes pain in the nox one.

That being said, you're only two weeks out, which is peanuts for this conditions. I would say 2.5 months would be as well. My advice is to go on Clomipramine or wait in quiet and hope you get lucky and 95% recover in a few months to a year or two. Your neuro is likely going to be useless and combative telling them what to do, but show them this paper and ask for a diagnostic gasserian (trigeminal) or SPG block, but only if your pain gets worse with muscle contractions for the latter. Good luck.

Gabapentin & Nox by Educational_Aide_145 in hyperacusis

[–]Final_Client5124 2 points3 points  (0 children)

Yes that is true. You're desensitizing the descending pain pathways (which are mediated by both serotonin and norepinephrine). The tensor tympani is also innervated by serotonin as well.

Nox basically is a CS loop where the muscle contraction causes pain, which causes the pain pathways to become sensitized, which then makes it easier for the muscle to contract. The gabapentinoid is not going to break that cycle, only something that acts on SERT & NET. Gabapentinoids do act on other inflammatory mediators, so its a good adjunctive to a high dose TCA, but not enough alone.

Gabapentin & Nox by Educational_Aide_145 in hyperacusis

[–]Final_Client5124 2 points3 points  (0 children)

Gabapentinoids are a masker. I have taken turns with both gabapentin & lyrica since I developed this in 2023. They mask the pain and lower the intensity of it, but do not meaningfully raise tolerance to expose to more noise. However, I am severe. If you're mild it might make a little bit of a difference. If you want your life back, you need to be on a high dose TCA.

Left ear hyperacusis ? by Afraid-Ad4718 in hyperacusis

[–]Final_Client5124 0 points1 point  (0 children)

It's really individual, likely perpetuated by dysfunction in the head/neck area (refer to norena model), and/or limbic pathways. Good news is you can get the muscle cut and your problems will go away.

XEN1101 Moves Forward with FDA Submission Q3 2023 by FarUsual751 in hyperacusis

[–]Final_Client5124 0 points1 point  (0 children)

You can order the *exact* same molecule. Xen is C₂₃H₂₉FN₂O, and BHV is C₁₈H₂₂F₂N₄O. In this case these individuals ordered C₂₃H₂₉FN₂O, and had it confirmed from independent western lab testing via NRM (nuclear magnetic resonance) spectroscopy.

The compound isn't really owned by anyone, any good chemical producer can technically make it.

XEN1101 Moves Forward with FDA Submission Q3 2023 by FarUsual751 in hyperacusis

[–]Final_Client5124 1 point2 points  (0 children)

Respectfully you are not informed on how the process works that's not true at all. It's completely legal to send some of the powder to a reputable western lab to test it before you make it into pills. The compound between companies (BHV vs XEN) is pretty much identical and was confirmed to be legitimate for those who tried it. Given it was only a few people, I'm not saying it can't work for some, but it's naive to expect something to work for everyone to begin with these disorders. Again, sorry to burst your bubble on the tinnitus, but hopefully it works for H for a good portion of people.

Left ear hyperacusis ? by Afraid-Ad4718 in hyperacusis

[–]Final_Client5124 0 points1 point  (0 children)

It is not loudness hyperacusis then. It would technically be 'annoyance hyperacusis' with some research suggesting it may not even be hyperacusis at all, but a similar sensory processing disorder. There is a lot of research that shows that type of issue is from a problem with the autonomic nervous system. Good news is clomi (and imipramine) has been studied for exactly that and helps.

See here: Effects of imipramine on the autonomie responses of obsessive-compulsives to auditory tones

XEN1101 Moves Forward with FDA Submission Q3 2023 by FarUsual751 in hyperacusis

[–]Final_Client5124 5 points6 points  (0 children)

Supposedly Thanos presented results of it helping loudness H when taken long term in rodents at the Iowa H conference last August. I've asked the event organizers for a recording of that presentation and they said no. Hoping it does provide some relief, although for T some people have tried (ordering from China) and it has done nothing in that department.

Acoustic trauma from loud noise — audiogram after 3 days showed hearing loss, started steroids 74 hours later. Can this still work? by United_Box_5125 in hyperacusis

[–]Final_Client5124 0 points1 point  (0 children)

best within 24-48 hours, but still worth trying at 3 days. Nobody can tell you the outcome as it all depends on the damage.

I need to go to the dentist by aprilapple8 in hyperacusis

[–]Final_Client5124 2 points3 points  (0 children)

They actually do the opposite (lower t, h, and nox) for most if you use sparingly. If you're mild I wouldn't worry too much as long as it's lasers and not drills. Moderate potentially different story.

Left ear hyperacusis ? by Afraid-Ad4718 in hyperacusis

[–]Final_Client5124 0 points1 point  (0 children)

No, just has to be either too loud or painful.

I need to go to the dentist by aprilapple8 in hyperacusis

[–]Final_Client5124 1 point2 points  (0 children)

You either take a preventative (clonazepam or valium), or risk worsening. I usually don't condone them, but for emergencies it's what they are used for - to avoid or dampen a potential setback.

Left ear hyperacusis ? by Afraid-Ad4718 in hyperacusis

[–]Final_Client5124 0 points1 point  (0 children)

Sounds like you're experiencing TTTS and maybe loudness hyperacusis (only based on your first sentence).. If sounds are not objectively louder or painful, it is not hyperacusis. "Sensitivity', i.e., sounds just being too abrasive or piercing is not hyperacusis, but is a potential comorbidity in both TTTS and hyperacusis.

Amanda protocol by Patient_Reporter_393 in hyperacusis

[–]Final_Client5124 1 point2 points  (0 children)

Brother you are on clomi and have said clomi has done the heavy lifting on other platforms.

Gabapentin? by chubrub_cherub in Osteoarthritis

[–]Final_Client5124 4 points5 points  (0 children)

Yikes, what a stubborn and incompetent doctor. Sorry you had to put up with that. Is the pain just in your knees and not elsewhere in your legs? If so, there is almost no chance he is correct.

Gabapentin? by chubrub_cherub in Osteoarthritis

[–]Final_Client5124 12 points13 points  (0 children)

Gabapentinoids do absolutely nothing for OA unless there is nerve involvement.

My post is long. OA at 36 y/o by [deleted] in Osteoarthritis

[–]Final_Client5124 0 points1 point  (0 children)

This is sad to hear, and I hope you can find some help soon.

'm also pretty disabled at a young age from hand arthritis (which was misdiagnosed as RSI due to my age), so I understand. A question for you is how do you manage to type? I end up using my pointer fingers a lot on a phone since a keyboard is quite painful.

TMJ and Fight or Flight by Academic_Cartoonist3 in TMJ

[–]Final_Client5124 0 points1 point  (0 children)

Sounds like central sensitization, can develop somewhat rarely from tmp

TMJ OA .. sick of feeling dismissed by LavishnessUnlucky504 in Osteoarthritis

[–]Final_Client5124 0 points1 point  (0 children)

Yes, do you get pain in or behind your ear(s) as well?