Pain Hyperacusis in Relation to Acoustic Shock & Synapse Disconnection

I'm happy to report back that after 24 hours of taking my first dose of 75 mg slow-release Ambroxol, my trigeminal neuralgia symptoms have significantly reduced - 50 to 60%. Unfortunately, my sound sensitivity is still very much the same and the "instant" ear pain/reactivity remains unchanged.

Side effects: slight dizziness, slight light headedness. Noticeable post-nasal drip about 4-6 hours after taking the pill. Crackling in my left ear (where I currently have the sensitivity and neuralgia) has significantly reduced. Right ear sensitivity unchanged, but I have no neuralgia on that side of my face. As a general note, my hyperacusis and neuralgia "flip" from ear to ear on a daily/weekly basis.

 

Congratulations man! I’m so happy to see you had positive results. I hope you continue to get the relief.

 

I am currently on Gabapentin (400 mg) and Buspar 20mg).

I'm curious about your experience with Trileptal. How did it work for you? My doctors are thinking of adding Trileptal 300 mg to my regimen.

 

Glad you are getting some relief! So strange that Ambroxol helps trigeminal pain but not ear pain.

I also tried Ambroxol, 60 mg x 3 a day. I don’t have much trigeminal pain, so I didn’t get much out of it besides a numb mouth and throat. What I do have is a whole lot of ear pain, sound sensitivity, and horrible neuropathic itching that spreads across my face, and those symptoms remained unchanged. As far as side effects, it made me nauseous which was kind of rough since I’m trying to intermittent fast.

Definitely a “win” for the folks with trigeminal pain, though.

 

I say give it a shot. I only took a small dose and it did seem to help with my ear pain. It helped with my mood, too, since it’s also used off label as a mood stabilizer. If I can’t find anything better I’ll probably give it another shot. I’ve also read about combining gabapentin and trileptal to get more effective pain relief, so it sounds like you’ve got a good doctor there trying to help you out. If you do try it out I’d love to hear about how that combo works out for you.

 

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 if it can be used as needed? Also do you know if it is in anyway similar to Trobalt? (Being an epileptic drug). Myself, I can't find anything to suggest they're similar and even seen a few comments in old threads on here to say that Trobalt was better than Trileptal anyway.

Does anyone know what makes Xen496, Xen1101, RL81, Trobalt/Retagabine different from anything else on this list? It's from an epilepsy website. (I have tried Lyrica and Neurontin on this list with no luck and I don't believe they are similar to Trobalt though so maybe none of them are.)

 

Trobalt works in potassium channels in the brain. None of the others mainly do this.

Gabapentin and Pregabalin for instance mainly do calcium channels and Tegretol does sodium channels.

 

I see Born to Slay already answered the question about Trileptal vs Trobalt. Trileptal is a sodium channel blocker, and it’s essentially a newer version of Tegretol that is supposed to have less side effects.

My understanding is that Trileptal needs to be taken for a period of time in order really feel the full effects, but I think you’d know if it was helping or not after a couple of days. At least, that was my experience and that is what I’ve heard from others who have tried it. You also may not need to take very large doses to get pain relief. I only took 150 mg a day during my trial, and I know one man who had fantastic results at only 150 mg a day. So, I’d suggest starting out low and then gradually increasing the dosage as needed. I hope it helps you if you decide to take it!

 

@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 started wondering how different they were to Trobalt. I did loads of reading today anyway on Trileptal but the reviews don't make me feel great about it and the most useful things I read were links back to old threads here about people who had tried both and preferred Trobalt (but could no longer get it). So it looks like the potassium channel drugs are the ones to look out for.

I really hope that a decent potassium channel drug when it gets released is more than just a pain killer and actually gives back some functional pain-free hearing by masking or disabling the pain mechanism.

 

I agree with this 100000000%. Pain relief that doesn’t allow us to resume the normal activities that make us human (music, family, socializing, etc) without setbacks doesn’t do us a whole lot of good.

 

I know someone on Facebook who was basically cured by a low dose of Trileptal.

 

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 openers'. Trobalt seemed to be so effective that I think it is what we're waiting for in a reformulation, and lesser known Flupirtine also appeared very effective but could not be taken long term by those who tried it due to risk of liver toxicity and looks like it became very hard to get hold of.

I put this class of drug in a different league to the others (Tegretol/Trileptal, Gapapentin/Lyrica, Benzos etc.) from what I've read and I think from what I read about Trobalt, it is a drug that as long as you are on it (needs to be long term) will actually give back some functional pain-free hearing / tinnitus relief and not just pain relief after exposure. I don't know it for a fact, it just seems to be reported on differently and more positively than other 'meh' treatments. I know some spurious things work for some people which is great, I'm just hoping that one day there's something that all us 'usual noxacusis suspects (general good hearing but with pain)' begin to start taking and ALL respond to it as a subgroup. Trobalt already sounds like an effective treatment for the tinnitus subgroup.

I can't find any Trobalt anecdotes yet that make the distinction between the 2 problems (pain relief / being able to have pain-free sound again) but if I can find them it will give me a lot more hope for the reformulation.

 

How's that going? Do you feel it helps?

 

I can't attribute anything to that specifically no, but I think you have to do it for a long time and it's only been a few weeks.

 

Does there exist a theory as to why hyperacusis can cause inflammation of the muscles around the ear/jaw? When at its worst, the muscles around my ear canal were swollen like I had an ear infection, but it was noise induced. Months after that the muscles around the ear felt very stiff/hard really kind of calcified.

Now months with a lot of rest and high Magnesium & Potassium supplementation the muscles seem to becoming more flexible again.

Would be interesting to know if someone has a theory as to why hyperacusis can cause this muscle inflammation.

 

Through trigeminal nerve irritation I suspect.

You think Potassium helped specifically? What was your dose?

 

I have read a few times that a theory suggests the pain and stiffness might be a form of tendonitis in the middle ear. I don’t know what sets it off but for sure I feel like my ears are rigid and now have some form of tendonitis in the middle ear. I never had this before tinnitus.

 

Ah ok, so this nerve irritation leads to muscle contractions which then leads to pain and inflammation.

I am taking three times daily:
120 mg Magnesium
780 mg Potassium

I think both do help.

 

Hey everyone!

So I went back to pain management and the pain doctor asked his boss and his boss (who is a higher up pain doctor) suggested doing what’s called a Sphenopalatine Ganglion Block instead of a Stellate Ganglion Block.

Here’s some stuff about it. It definitely seems like an interesting idea:

https://ainsworthinstitute.com/treatments/sphenopalatine-ganglion-block/

 

Exactly what happened to me. I was going for a Stellate Ganglion Block, referred by an ENT surgeon, but the pain doctor thought it was better to try Sphenopalatine Ganglion Block instead.

First administration really did nothing or was at least very short lived.
They will basically administer Lidocaine into your nostrils.
I´ve done it once and gonna try it again on the 5th and 12th of May.

I´ve done SGB as well. Did nothing.

I have severed my Tensor Tympani. Did nothing.

Noxacusis is a tough nut to crack.

If your trigeminal nerve is involved in your pain, you will have a shot at this.
For me I do not think the trigeminal nerve is involved with my pain.

 

I’d love to hear how this works for you if you decide to try it.

 

Do you have face pain? That’s my biggest problem.

 

I want something to work for you soon. Been way too long. Fingers crossed the next blocks give you some relief.

 

No face pain.

 

Thank you FGG

But all of these things, I think, only works if our TN is involved with the pain. I don´t think that is the case with me. My pain stems from the instant insanely high pitched reactive shrilling/distorted response to sound. It is clear to me the pain stems from a fucked up cochlea with sensitized nerve fibers and hair cells bent every which way. I have developed a chronic pain as well in both ears as a secondary effect, but no facial pain.

Weirdly enough antipsychotics like Zyprexa or Fluanxol are the only things that seem to dull the pain and the latter will totally silence my tinnitus for one day, so dopamine must be involved somehow in my case.

The why´s and how´s just build up more and more. But no answers .

 

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.

 

Right back at you guys!

It's such a sad life not to tolerate sound. That sound has become your worst enemy.

I never thought this could happen. And sound is something you can't escape.

Right now I'm actually listening to music (Pixies) at very low volume ecause I miss it soo much.

It's hard to enjoy, because the distortions and slight pain to some notes.
Still everyday noise like running water, cars, and any unexpected sounds are much worse than willingly listening to music at low volume.

Got some Oxycontin in me as well. Takes the edge off

I'm going to bring up Ambroxol with my pain doctor on the 5th, but from what I've read on here it does not do much with the kind of pain I experience.

Have you tried Ambroxol @100Hz?

 

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 this will be Xen1101 or Xen496.

 

If you find a drug that’s not addictive that’s a pain killer and that you can always take, wouldn’t that be the same thing?

 

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 for me and just led to setbacks, so it's not stopping the actual pain-causing mechanism. Agree with you though, I'd happily be on a pain killer permanently as long as it actually worked.