Pain Management for Hyperacusis

[MadeleineHope]

Hi everyone,

I've been dealing with increased pain from my hyperacusis lately & I'm looking ahead to have something to take if the pain gets worse. So far I've been doing my best to tolerate it (even though it brings tears to my eyes) & ginger tea has been helping sometimes, but again, I feel like it's been getting worse & I want to have something on hand. I'm mostly interested in having something that I can take as needed.

So I'm wondering what others' experiences have been in this area.

Thanks!
Maddy

P.S. I apologize for this post not sounding so great but I'm in pain!

 

[MindOverMatter]

It's okay and normal to feel grief and pain with this situation Maddy... Just a few friendly words/advice.

For you to get better I believe that THE most important thing is to get some sort of professional help in order to manage your thoughts. Not believing in any chance of getting better, and like you wrote earlier, not even sure if you want to live with it - even though it would get a bit better - is a difficult "starting point".

I certainly wouldn't be where I am today, if I didn't believe I could get better. Every day, once I got past the worst first year, I told myself: "I will get better. If not today, then there is always tomorrow." I went to counseling for 2.5 years, which gave me needed knowledge and support in regard to tinnitus/hyperacusis.

For a long time I felt like I was worsening all the time/every day. But in reality, when stuck in fight/freeze/flight mode, you are not necessarily worsening per se. Overfocusing/googling, anxiety, depression, all these things make you spiral down and increase the mind's perception of pain. It all feels worse...

In regards to supplements, medication and such, as we all know, there are, to this day, no cure. And for many types of medication, there is also a great chance of worsening.

You could ask a neurologist, if you can get an appointment with one, about LDN (low-dose Naltrexone). This, however, is a type of treatment that you will have to use for quite some time (for most people) to see results. You can read a lot about it on the web.

 

[Juan]

Deflazacort worked for me. It takes the edge off the pain, but it will not fix the consequences of the odd accidental loud noise exposure, that is, hearing loss, more tinnitus or more hyperacusis. It just decreases the pain after ears are hit by very loud noise.

 

[MadeleineHope]

It's okay and normal to feel grief and pain with this situation Maddy... Just a few friendly words/advice.

For you to get better I believe that THE most important thing is to get some sort of professional help in order to manage your thoughts. Not believing in any chance of getting better, and like you wrote earlier, not even sure if you want to live with it - even though it would get a bit better - is a difficult "starting point".

I certainly wouldn't be where I am today, if I didn't believe I could get better. Every day, once I got past the worst first year, I told myself: "I will get better. If not today, then there is always tomorrow." I went to counseling for 2.5 years, which gave me needed knowledge and support in regard to tinnitus/hyperacusis.

For a long time I felt like I was worsening all the time/every day. But in reality, when stuck in fight/freeze/flight mode, you are not necessarily worsening per se. Overfocusing/googling, anxiety, depression, all these things make you spiral down and increase the mind's perception of pain. It all feels worse...

In regards to supplements, medication and such, as we all know, there are, to this day, no cure. And for many types of medication, there is also a great chance of worsening.

You could ask a neurologist, if you can get an appointment with one, about LDN (low-dose Naltrexone). This, however, is a type of treatment that you will have to use for quite some time (for most people) to see results. You can read a lot about it on the web.

Thanks for your supportive post @MindOverMatter! Did/do you have pain hyperacusis, & did/do you use LDN? If so, what kind of pain did/do you experience & how did/does the LDN help? Just trying to figure out what might work best for me!

Cheers,
Maddy

Deflazacort worked for me. It takes the edge off the pain, but it will not fix the consequences of the odd accidental loud noise exposure, that is, hearing loss, more tinnitus or more hyperacusis. It just decreases the pain after ears are hit by very loud noise.

Thanks for the suggestion @Juan! Can you share what kind of pain this med helps you with? For example, is it a burning pain, stabbing pain, etc.? And at what dosage & for how long do you take it for?

I see Deflazacort is a corticosteroid, so I can see how that would help given the role of inflammation/the immune system in the current models of pain hyperacusis.

When you say you still experience increased hyperacusis, is that loudness hyperacusis? Or does your pain hyperacusis activate more easily after the med wears off?

Also, did/do you have TTTS, & how did/does the med affect this?

Thanks!
Maddy

 

[MindOverMatter]

Thanks for your supportive post @MindOverMatter! Did/do you have pain hyperacusis, & did/do you use LDN? If so, what kind of pain did/do you experience & how did/does the LDN help? Just trying to figure out what might work best for me!

No worries.

I sincerely hope you do get better, but I really believe you should seek support one-on-one with someone knowledgeable within the field of hyperacusis/tinnitus - for guidance, support, and some kind of therapy. I think that would be first step in your situation - especially since you even consider ending things...

What do you consider pain hyperacusis?

I never had continuous, physical stabbing pain in my ears if that's what you think of. I have tinnitus and hyperacusis - although the latter has gotten much better over the span of time. For me it was in particular reactive tinnitus (reacting to anything) and loudness hyperacusis.

In addition to this I had long spells with ear fullness, TTTS, and nerve pain in my face.

From LDN Research Trust:

Low Dose Naltrexone binds to the endorphin receptors for about 1 – 1/2 hours, and the blockade lasts about 4 - 6 hours. The effects of LDN are analgesia and anti-inflammatory. One of the other effects is that it increases the production of your own endorphins.

So it will support your immune system and act anti-inflammatoric. No magic bullet, and you need patience with it. There are no quick fixes! You could read more about it on LDN Research Trust and other sites.

Whether it may work for any of your issues is difficult to say. But it is harmless to try, and has very few side effects on such a low dose. You would have to talk to a practitioner/neurologist about it.

 

[MadeleineHope]

No worries.

I sincerely hope you do get better, but I really believe you should seek support one-on-one with someone knowledgeable within the field of hyperacusis/tinnitus - for guidance, support, and some kind of therapy. I think that would be first step in your situation - especially since you even consider ending things...

What do you consider pain hyperacusis?

I never had continuous, physical stabbing pain in my ears if that's what you think of. I have tinnitus and hyperacusis - although the latter has gotten much better over the span of time. For me it was in particular reactive tinnitus (reacting to anything) and loudness hyperacusis.

In addition to this I had long spells with ear fullness, TTTS, and nerve pain in my face.

From LDN Research Trust:

Low Dose Naltrexone binds to the endorphin receptors for about 1 – 1/2 hours, and the blockade lasts about 4 - 6 hours. The effects of LDN are analgesia and anti-inflammatory. One of the other effects is that it increases the production of your own endorphins.

So it will support your immune system and act anti-inflammatoric. No magic bullet, and you need patience with it. There are no quick fixes! You could read more about it on LDN Research Trust and other sites.

Whether it may work for any of your issues is difficult to say. But it is harmless to try, and has very few side effects on such a low dose. You would have to talk to a practitioner/neurologist about it.

My experience of pain hyperacusis is primarily a burning sensation in my ear. Sometimes I will also have the sensation of a needle or something sharper pricking my ear (this has on occasion been a sensation more intense than pricking as well). My face has also had an altered sensation that I describe as partial numbness/stiffness for months now, with burning & cooling sensations around my eyes.

Have you ever used LDN? If so, with which symptoms did it help you?

Thanks,
Maddy