Pain Hyperacusis in Relation to Acoustic Shock & Synapse Disconnection

[grate_biff]

I know Xenon Pharmaceuticals aren't offering compassionate use. Biohaven might when they start the pivotal phase but who knows. I don't live in the USA/Canada so expanded access won't be available to me. I will have to wait for these drugs to come out before trying.

Hopefully someone from Canada and USA can get access to these drugs. Xenon Pharmaceuticals is in Canada and Biohaven/Pfizer in the USA.

If you´re not on any meds metabolized by CYP 3A4, I would try Tegretol (Carbamazepine). Works well on both tinnitus and noxacusis!

 

[Lucifer]

If you´re not on any meds metabolized by CYP 3A4, I would try Tegretol (Carbamazepine). Works well on both tinnitus and noxacusis!

Can you take that everyday or does the effects of the drug wear off the longer you take it?

 

[StoneInFocus]

If you´re not on any meds metabolized by CYP 3A4

Hey, is this because of safety or other reasons?

I would try Tegretol (Carbamazepine). Works well on both tinnitus and noxacusis!

By noxacusis, you mean acute, stabbing pain in reaction to sounds, right? Do you also suffer from burning pain?

I have read that Carbamazepine blocks sodium channels.

Have you tried Ambroxol, another sodium channel blocker, and how do the effects of these drugs compare?

 

[grate_biff]

Hey, is this because of safety or other reasons?

It's such a strong inducer of this enzyme that other meds can be less potent. Remeron for instance will have 60-70% lower plasma concentration if taken with Tegretol. It's such a strong inducer it weakens its own bioavailability for god's sake! So do an interaction check.

By noxacusis, you mean acute, stabbing pain in reaction to sounds, right?

Indeed! But I would describe mine as thousands of needles, dipped in acid, penetrating my brain. But instant pain, yes.

In theory, it should work even better for those where the trigeminal nerve is part of the culprit though.

I have read that Carbamazepine blocks sodium channels.

That's right. Hopefully it affects the "holy" Nav1.7 one, but who knows?

Have you tried Ambroxol

I tried it in very low doses. No effect.

With Tegretol, I took 200 mg TID. It's the 7th anti-epileptic I've tried, and it was far superior to the others in terms of effect.

I'm on Trileptal (Oxcarbazepine) now, which is also a sodium channel blocker. Little effect, but am still on low dose.

 

[StoneInFocus]

It's such a strong inducer of this enzyme that other meds can be less potent. Remeron for instance will have 60-70% lower plasma concentration if taken with Tegretol. It's such a strong inducer it weakens its own bioavailability for god's sake! So do an interaction check.

Hey, thanks for your response! I'll keep that in mind.

Indeed! But I would describe mine as thousands of needles, dipped in acid, penetrating my brain. But instant pain, yes.

God that sounds rough, hope you are holding on at the moment.

Could you maybe give some examples of what gives you pain?

Hopefully it affects the "holy" Nav1.7 one, but who knows?

It's interesting that you mention Nav1.7.

Correct me if I'm wrong but it is my understanding that signal transmission in type II SGNs is mainly facilitated by the influx of potassium channels.

Nav1.7 is not expressed in the nervous system either, so I am not really sure how much a Nav1.7 channel blocker would help with noxacusis, unless of course there are other peripheral factors involved like some sort of trigeminal nerve dysfunction like you say.

Did you know that it was found that "Inhibition of the Nav1.7 Channel in the Trigeminal Ganglion Relieves Pulpitis Inflammatory Pain" in rats?

Once available, I would certainly try one of the Nav1.7 blockers currently in development but I have my doubts in how effective they will be for noxacusis. What do you think?

With Tegretol, I took 200 mg TID. It's the 7th anti-epileptic I've tried, and it was far superior to the others in terms of effect.

I'm on Trileptal (Oxcarbazepine) now, which is also a sodium channel blocker. Little effect, but am still on low dose.

I figure you're not on Tegretol anymore? May I ask you why you stopped?

By the way, have you tried Flunarizine yet? It affects intracellular calcium signalling too. I think I am going to get a prescription for it.

Really looking forward to hearing about your experiences with Oxcarbazepine.

 

[Lucifer]

@StoneInFocus, @grate_biff, I see that Tegretol is an anti-epilepsy drug. Is this similar to Trobalt? Do they both open Kv7 potassium channels?

@StoneInFocus, what Nav1.7 drugs are in clinical trials right now?

 

[grate_biff]

Could you maybe give some examples of what gives you pain?

EVERYTHING!

I figure you're not on Tegretol anymore? May I ask you why you stopped?

I'm on Remeron.

Really looking forward to hearing about your experiences with Oxcarbazepine.

I stopped it now after a week. It interfered with Remeron as well. I'm back on Gabapentin.

Tapering benzo. Really sick.

 

[StoneInFocus]

EVERYTHING!

I'm on Remeron.

I stopped it now after a week. It interfered with Remeron as well. I'm back on Gabapentin.

Tapering benzo. Really sick.

Damn your situation sounds rough. Please hold on man.

Considering antidepressants, have you read the thread where one guy reported improvements on Clomipramine?

I'm curious as to what mechanisms caused the symptom improvement. Maybe because of its antagonizing effect on alpha 1, histamine receptors and V.G. calcium channels, strong serotonin reuptake inhibition or maybe because of its calcium signalling modulating properties?

Of course I don't know the reason of you using Remeron but have you ever considered trying Clomipramine?

 

[Lucifer]

Damn your situation sounds rough. Please hold on man.

Considering antidepressants, have you read the thread where one guy reported improvements on Clomipramine?

I'm curious as to what mechanisms caused the symptom improvement. Maybe because of its antagonizing effect on alpha 1, histamine receptors and V.G. calcium channels, strong serotonin reuptake inhibition or maybe because of its calcium signalling modulating properties?

Of course I don't know the reason of you using Remeron but have you ever considered trying Clomipramine?

View attachment 55485

I might give Clomipramine or Tegretol a go. Which one should I try first? Can they be taken with an SSRI antidepressant?

 

[scared8]

Trigger Warning: Mental Health/Suicide

Does anyone here have nerve-like pain (not sure if nerve related) that is 24/7 even in silence? I'm having severe ear sensitivity/extreme nerve pain & discomfort. I've been throwing up for the past 3 ish days. It seems to have come out of nowhere and isn't getting better.

Not sure if this is noxacusis. I got the hyperacusis and tinnitus worsening from an MRI.

I have reached suicidal levels and thinking of ER/psych facility because I can't take it. If anyone has any advice, it is sincerely appreciated. I'm scared, I don't want to die but it's near impossible to live this way.

Is there any chance this will get better/go away?

 

[Jammer]

Trigger Warning: Mental Health/Suicide

Does anyone here have nerve-like pain (not sure if nerve related) that is 24/7 even in silence? I'm having severe ear sensitivity/extreme nerve pain & discomfort. I've been throwing up for the past 3 ish days. It seems to have come out of nowhere and isn't getting better.

Not sure if this is noxacusis. I got the hyperacusis and tinnitus worsening from an MRI.

I have reached suicidal levels and thinking of ER/psych facility because I can't take it. If anyone has any advice, it is sincerely appreciated. I'm scared, I don't want to die but it's near impossible to live this way.

Is there any chance this will get better/go away?

I recommend a visit to the ER if you don't have access to a good primary care doctor that can steer you to a specialist, but I'd only talk about your pain symptoms and leave the suicidal thoughts out of it, otherwise you'll be placed on a 5150 three day hold in a mental hospital.

This has happened to both my wife and myself, and the local psych hospital didn't help either of us receive assistance for the underlying problems that caused her to be vocal about killing herself and after my attempt. They are primarily just a holding facility to keep you alive if the hospital thinks you're a threat to kill yourself. This is in a major metropolitan city and there are two mental hospitals; one is public and the one we went to private. We were both in the private hospital because we had insurance.

We both received only the barest of counseling by the "doctor" who spent about 10 minutes asking unrelated questions to why we were there during their one visit during the three days we were held. The only thing that was helpful was getting released after the three day hold (four for me because it was a Friday when I was 5150ed) was realizing how great if felt to be released.

It was later determined that wife had trigeminal neuralgia, which took 18 months of medical diagnostics to finally determine she had a benign tumor inside her TMJ. She had successful outpatient surgery to remove the tumor and rebuild her TMJ. I still have my tinnitus and hyperacusis, only now it is at least 10 times more devastating than when I tried to kill myself.

This is a caution about reviling your mental state at the ER from one couple that have been there and done that.

I wish you well on your journey to resolve your painful condition.

 

[StoneInFocus]

I might give Clomipramine or Tegretol a go. Which one should I try first? Can they be taken with an SSRI antidepressant?

I don't know about your personal situation, but you could ask your doctor, I've you are already on an SSRI, to consider switching you to clomipramine and maybe have you taking tegretol on top?

If you have to pick one over the other I think I'd go for Tegretol, as the results from clomipramine thread seem mixed, but i think it's important that you do your own research first and see which of these two has the most acceptable safety profile for you. I'm not a doctor so I do not really do medical advice for the most part.

Maybe we should make a separate thread for medication use in general.

 

[MadeleineHope]

I might give Clomipramine or Tegretol a go. Which one should I try first? Can they be taken with an SSRI antidepressant?

Have you considered switching to Cymbalta? It's an SNRI, so close to what you're currently taking, & used for chronic pain (including nerve pain). From my understanding, it's also milder than the other two meds you're considering in terms of side effects, & can be taken longer-term. Just a thought.