Does anyone not get straight up pain but rather a sensitization, like a tingling around their jaw, ear canal and ear? I am starting to get this with certain types of noise.
Pain Hyperacusis in Relation to Acoustic Shock & Synapse Disconnection
- Thread starter 100Hz
- Start date
Member- May 27, 2020
- 556
- Tinnitus Since
- 2007
- Cause of Tinnitus
- Loud music/headphones/concerts - Hyperacusis from motorbike
Marin
Member
- Aug 14, 2020
- 280
- Tinnitus Since
- 06/2020
- Cause of Tinnitus
- SSNHL (probably previous noise exposure, too)
I know exactly what you mean, and it's so hard to be scientific when you're just trying to get out of pain. Thank you for the update! I just may buy some myself and add it to my highly variable stack
How long of a fast do you intend to do? I'm very interested in fasting myself, but I have only been doing intermittent fasting so far.
I'm fasting every 24 hours for 24 hours. I didn't find any consensus on what is ideal for fasting so that just seemed the easiest schedule to stick to.I know exactly what you mean, and it's so hard to be scientific when you're just trying to get out of pain. Thank you for the update! I just may buy some myself and add it to my highly variable stack
How long of a fast do you intend to do? I'm very interested in fasting myself, but I have only been doing intermittent fasting so far.
Yes, such info needs to spread also to ENTs somehow.
ENT: You get ear pain from laptop speakers even on low volume?
Me: Yes.
ENT: This must be psychological. Are you satisfied with your job?
Fortunately this has now improved quite a bit, but only by wearing Peltor muffs nearly the whole day.
- May 7, 2015
- 1,051
- Tinnitus Since
- 29.09/2014
- Cause of Tinnitus
- Acoustic trauma using headphones
I read this too. That leaves me out. Fuck it. You can't win this battle.
If something works for one thing, it is bound to have side effects.
- May 7, 2015
- 1,051
- Tinnitus Since
- 29.09/2014
- Cause of Tinnitus
- Acoustic trauma using headphones
I hear you like Calcium Channel blockers, @Aaron91.
This might interest you:
Ambroxol: A CNS Drug?
Has me convinced I should maybe do pulsed therapy but so far so good on the drug. I think I'm going to slowly ramp up and see how I do.
Tagging @grate_biff, too because this mentions having some effect on the AMPA glutamate receptor. This is *theoretically* possibly a benefit with benzo withdrawal (since Topiramate an AMPA antagonist among other things was tested for this indication) but go very slow (ask your doctor as well) and monitor your symptoms if you try this (always a good idea anyway).
This might interest you:
Ambroxol: A CNS Drug?
Has me convinced I should maybe do pulsed therapy but so far so good on the drug. I think I'm going to slowly ramp up and see how I do.
Tagging @grate_biff, too because this mentions having some effect on the AMPA glutamate receptor. This is *theoretically* possibly a benefit with benzo withdrawal (since Topiramate an AMPA antagonist among other things was tested for this indication) but go very slow (ask your doctor as well) and monitor your symptoms if you try this (always a good idea anyway).
It seems to definitely do something.
It seems to lower but not eliminate my nerve pain. I haven't gone higher than 60 mg TID, though.
My sensitivity is the same, however. The same noises trigger pain, it is just noticeably a lot less intense.
I am only 2 months in so it is hard to say if this is a normal fluctuation or not.
It also seems to reduce the fluid feeling behind my ear and drain my Eustachian tube better (which is actually normally what the drug is used for).
I'm happy enough with it, that I ordered some more.
Yes. Only the facial pain is better. Nothing in the ear except I don't feel as much liquid behind my ear drum.
Report back if you try it. You might be a better test since yours is more long term...
It's a fairly low dose. The sore throat pain dose is 30 mg TID. The upper end that I have seen people try for Fibromyalgia flares I believe is something like 300 mg TID but that hasn't at all been trialed more than a week or two to my knowledge so I would definitely be careful with high, prolonged doses without any studies.
Are you still taking Gabapentin? Ambroxol's pain relief comes mostly from sodium channels but there is some cross reactivity when calcium channels (the same ones that Gabapentin affects). I especially wouldn't start high in that case since it may increase your risk of sides. You could always slowly increase and see how you do.
I might eventually go up to 90 mg TID but I don't know that I need to at this point yet.
But I personally think anyone trying any drug should start low first to test their reaction.
Okay, I usually play it a little risky and start high on stuff because I want to know if it works immediately. I have a lot of virtues but patience isn't one of them. But since I am still taking Gabapentin (at 900 mg a day), I'll probs start somewhat low. I just want this shit to go away.
Have the studies shown any serious problems? I haven't read anything that indicates that but I could've missed it.
Other than unique allergic reactions, the only thing I read is that you can (rarely) get central nervous system reactions including seizures at around 3000 mg a day. I don't think you gain more by going that high, either. Even then it actually doesn't cross the BBB well so maybe those people had a less tight barrier or that truly is a massive dose.
If it helps, I think at 60 mg TID you should at least know pretty quickly if it does something or not even if it's it not the full effect.
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 relatively soon.
In this scenario could Xen / RL-81 Trobalt reformulation restore a reasonable quality of life, even if we had to take it forever with side effects? Importantly would we be able to listen to music and socialize again etc?, because although it's a band aid, could it be a band aid that effectively gives us back pain-free listening without tinnitus reactivity and setbacks, or does it still just fix pain but we still require silence? There's a huge difference between being able to clear up pain (even instantaneously and on demand), versus getting back pain-free listening without the threat of reactive tinnitus and setbacks, even if that requires an ongoing daily treatment as opposed to a regenerative cure (which I'm not completely sold on anyway for certain sufferers).
SPI-1005 looks good, but only for the pain side of it. If SPI-1005 does what I hope it will do then the pain part of noxacusis will be quickly fixable after each setback, but I doubt it will give us back the ability to have pain-free listening or stop setbacks though. They could of course be used together, but in my head that would only make sense if a reformulated Trobalt does something other than just fix pain after the fact. (I'm not trivializing noxacusis pain at all btw, it just that it's only half of the problem when it comes to noxacusis). Reformulated Trobalt really is what I hang onto the most for some reason, and I realize now its down to the hope that it could give back pain-free listening over and above just pain relief. (Could also be the first to get approved.) How do others view what it will do?
The above is obviously only relevant to a small group of sufferers - not much hearing loss / good audiograms, degrees of tinnitus, but with severe noxacusis. Although we can hear perfectly well we are forced to proactively block noise because the sound that we can hear perfectly well comes hand in hand with pain. I can't think of any other condition that noxacusis is similar to, but if noxacusis was an eyesight condition we would be forced to walk around with our eyes closed, or squinting as just by seeing things it would cause us pain even though our eyesight is perfectly adequate.
TL;DR - Big difference between a 'pain free life' and a 'life worth living'. If SPI-1005 gives me back a pain free life that's good, but will reformulated Trobalt give me back a life worth living and allow me to listen to music etc. and enjoy pain-free listening without fear of reactive tinnitus, pain, and setbacks?
In this scenario could Xen / RL-81 Trobalt reformulation restore a reasonable quality of life, even if we had to take it forever with side effects? Importantly would we be able to listen to music and socialize again etc?, because although it's a band aid, could it be a band aid that effectively gives us back pain-free listening without tinnitus reactivity and setbacks, or does it still just fix pain but we still require silence? There's a huge difference between being able to clear up pain (even instantaneously and on demand), versus getting back pain-free listening without the threat of reactive tinnitus and setbacks, even if that requires an ongoing daily treatment as opposed to a regenerative cure (which I'm not completely sold on anyway for certain sufferers).
SPI-1005 looks good, but only for the pain side of it. If SPI-1005 does what I hope it will do then the pain part of noxacusis will be quickly fixable after each setback, but I doubt it will give us back the ability to have pain-free listening or stop setbacks though. They could of course be used together, but in my head that would only make sense if a reformulated Trobalt does something other than just fix pain after the fact. (I'm not trivializing noxacusis pain at all btw, it just that it's only half of the problem when it comes to noxacusis). Reformulated Trobalt really is what I hang onto the most for some reason, and I realize now its down to the hope that it could give back pain-free listening over and above just pain relief. (Could also be the first to get approved.) How do others view what it will do?
I got some Ambroxol and some Trileptal recently. I haven't started using them because to be honest after 19 months of isolation since acoustic shock my pain level is very good (but I'm mostly in silence however), and unless these drugs can give me back pain-free listening then I can't see the point in taking them just yet. I also got some Acyclovir for if I ever get another acoustic shock or major setback as I think your theory on viral co-factor is nice. I had a similar theory that the TGN could have been historically sensitized by trauma or infection (or sensitized by the same acoustic shock that caused the cochlea damage), but I like your thinking that it could be due to something like ongoing EBV (something I do test positive for), that only now flares up because of a rare cochlea inflammation causing condition.
The above is obviously only relevant to a small group of sufferers - not much hearing loss / good audiograms, degrees of tinnitus, but with severe noxacusis. Although we can hear perfectly well we are forced to proactively block noise because the sound that we can hear perfectly well comes hand in hand with pain. I can't think of any other condition that noxacusis is similar to, but if noxacusis was an eyesight condition we would be forced to walk around with our eyes closed, or squinting as just by seeing things it would cause us pain even though our eyesight is perfectly adequate.
Yes I have doubts how safe an OAE test is for our ears too (my good ear showed tiny signs of noxacusis straight after a load of hearing tests 2 years ago that thankfully got better - was never sure what test caused it though, but my guess is either the Tympanometry or the OAE. I didn't do the LDL that time). I'm really interested in OAE tests though because my hearing and my audiogram up to 8 kHz are so good even though my OAEs show damage around the 4 - 8 kHz region. Would love to see them run alongside audiogram and WR in trials though.
Not really loud, just a series of pips at various frequencies.
TL;DR - Big difference between a 'pain free life' and a 'life worth living'. If SPI-1005 gives me back a pain free life that's good, but will reformulated Trobalt give me back a life worth living and allow me to listen to music etc. and enjoy pain-free listening without fear of reactive tinnitus, pain, and setbacks?
I have begun to see noxacusis as varied in pathology as tinnitus is and I think the success of these drugs on each individual will reflect that.
For instance, though my baseline tinnitus is a bit louder atm (I go back and forth on whether that's due to reduced ability to mask or not), it does not fluctuate with noise. Even more puzzling, some people with noxacusis don't have tinnitus at all (I think these cases make a case for an atypical trigeminal neuralgia that started with pressure irritation in the middle ear after noise, personally).
There are people who resolve all of their symptoms with tenotomy as well.
Anyway, in my head I have it grouped into three types:
1) Primarily middle ear (e.g., TTTS, stapes hypermobility, etc)
2) Primarily cochlear
3) More equally mixed.
I say "primarily" in 1) and 2) because there is obviously a connection between cochlear responses and middle ear muscle spasticity as well as middle ear effects on intracochlear pressure and inflammation and the auditory system coordinates these responses together as well.
Instantaneous pain from noise is probably most often intracochlear imo (because it's relayed directly through neurons), though strong middle ear muscle contraction might also contribute.
It makes much less sense for delayed pain to be cochlear. For delayed pain, it seems like TM and middle ear muscle movement causes inflammation which overtime increases middle ear pressure, which the nerves then react to (sometimes spreading across the TN, for instance).
I almost never get instant pain. I get increased TTTS spasms that will lead to pain later. Although, part of me wonders if it's because I literally don't have any OHCs left in my EHFs.
On that note, some sounds like bird sounds don't bother me at all, even when loud but my phone speaker on 1/10 will cause my TM to flutter.
I think for people like me, the ear drum spasticity might be a bigger issue:
The Discordant Eardrum
In my case, i don't think I will benefit much from either Trobalt or Ebselen because I think my problem is primarily middle ear.
Instead, I'm focusing on keeping my ET clear (Ambroxol helps with this) and trying to give my ear muscles time to heal (I would consider tenotomy, eventually). Music is ruined for me anyway (before noxacusis it was still unlistenable). I have too much hearing damage from Macrolide ototoxicity. Regeneration would be required in my case to have a normal life but I don't think it would help my noxacusis much if at all.
Btw, I see another subset of people with primarily trigeminal neuralgia and that alone affecting middle ear muscle function. It's all pretty heterogeneous.
The people that would most benefit from Trobalt I think have high tinnitus reactivity from sound. Ebselen would be universally useful in preventing setbacks imo but neither drug would be a "one off."
Something else you might find interesting from my case is I have pain in both ears but only have slightly reactive tinnitus in one. I don't know if I therefore half count as a person that has noxacusis but not tinnitus, since I literally have an ear that doesn't tolerate sound any better then the other one but has never had any tinnitus at all.
Also, I wanted to report back to the thread that I went to the chiropractor the other day and he did a therapeutic ultrasound on half of my face and for about an hour or so, that side felt better then the other side did in terms of pain in the face. Didn't change any ear symptoms. He did this because I explained to him that I have mostly trigeminal symtoms and he said he worked with a guy who has trigeminal headaches who benefited from the therapy long term. I see this as evidence that it is trigeminal pain.
I should mention some call therapeutic ultrasounds fake science but I must say that if what I felt was the damn placebo effect, then every doctor who ever told I could solve this problem by just not thinking about it was right all along. It was a clearly noticeable effect.
Apparently if I want insurance to *maybe* cover a nerve block I have to have tried therapy first. I meet the pain doctor today at the same place, he's the guy who would likely do nerve blocks if it comes to that, which I think it ultimately will.
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 response. And far more likely that delayed pain, especially in the TGN innervated areas, is a result of ATP / cytokine stimulation of the TGN (either from within the cochlea or the middle ear depending on where the inflammation originates from). I can also see this being responsible for the fluctuating & reactive tinnitus as the TGN has a link to the dorsal cochlear nucleus as well which apparently reacts to the stimulated TGN. (Tinnitus then reduces as inflammation/TGN stimulation dies down).
What I wonder though is would a reformulated Trobalt negate this instant pain signal / inflammation releasing mechanism from happening allowing pain free hearing, even if it needed to be taken daily for life? I don't understand the details enough of what it's doing with the K+ channels but this is what I'm hoping would be the end result.
Sorry to hear about your Macrolide ototoxicity and I really hope regenerative drugs happen, but I'm glad to hear you're getting some benefit with the Ambroxol. I think I'm facing a situation where I may be about to be offered Clarithromycin for something but I'm definitely going to try and find an alternative. My TTTS is also my warning sign, it doesn't usually register but I know that once it really starts to spasm continuously to certain sounds I need to get away from it or a setback is coming. I think the middle ear response could play a big part in setbacks and inflammation release, but I always believe the initial trigger via sound is in the cochlea. If it is the cochlea / type IIs that's responding to the noise negatively causing the chain reaction back to the middle ear then its this negative cochlea response that I really hope Xen / RL-81 deals with in some way.
Good. Good luck buddy, I hope it really helps. Also, I gotta say, I find it low key amusing your starter dosage is higher than FGG's long term one, lol.
At least it helps with ET clearance if that adds to pressure issues.
Hard to say if sodium or calcium channel blockers have therapeutic effects beyond helping lower pain.
It might take being off of it for awhile to see if there are lasting effects and I'm not ready to do that at this point yet.
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