My Severe Hyperacusis To-Do List

[Red]

After 2 weeks I have developed severe hyperacusis. My tinnitus has increased and has become very reactive, becoming as loud or slightly louder than the 70 dB grocery freezers before going silent. Everyday has been worse than the last. So far in addition to the above:

I get a weird skin crawling/numb headache, facial pain, and dull achey pain in my ears. These occur when I hear any sound at all so today I've been in silence with exception of the bathroom, central AC vents, and whispering to my SO. Just his notification sound that went off while we were together sent my face into a jolt of pain.

I am in a very dark place right now so I am making a to do list.

1. Get family doctor to put me on TCAs.
2. Take a Leave of Absence from work.
3. ENT manual wax removal. Maybe buy olive oil and wait a bit to do this?
4. Audiogram and LDL test.
5. Get custom molded earplugs. Wear them for a while.
6. Live in as much quiet as possible. 2 weeks, a month?
7. Slowly start to reintroduce sound.
8. Find new hobbies. Say goodbye to my friends.

I really need a lot of help with 8. I can't just lie in bed all day napping with tv on 0. As of right now, my hobby relies on light conversation to work. I have to say goodbye to it and my friends, hopefully only for now.

I want to ry indoor gardening, see if I can focus enough on reading, and might buy a camera mouse. I can't do a lot of dextrous hobbies because of chronic pain so I can't do puzzles or coloring books even though I would like to.

Begging for help, advice, thoughts. Any words of encouragement or hope would mean a lot.

 

[robHing]

I am sorry to read your story.
Reactive T with hyperacusis is very easily spiked and getting worse easily.
I have reactive T for over 4 months. Feeling like being pushed to the edge of abyss.

My encouragement to you is that --
1) you are not alone. there are many people in same situation like you.
2) you have a very good plan that will smooth your T&H life.
3) stay away from loud environments and protect your ears well.

God bless you !

 

[Alue]

Seems like a good plan. You may see if your doctor can write you a note to put you on medical leave (or short term disability). They may not, but it's worth a shot.

What's your current hobby that relies on light conversation?

It may not be as bad as yours, I don't have the pain, but I have very reactive tinnitus and I'm going through a spike right now too. What caused it? Playing a bored game with someone talking very loudly the entire time. I had earplugs in so it shouldn't be a dangerous volume, but it still gave me a spike and now I'm just hoping the spike is temporary. I found a bored gaming group that's a good social outlet that doesn't play loud music, but even that seems to be too much because of the few loud talkers I always end up with. This condition is very isolating. It can turn you into a recluse.

 

[DebInAustralia]

After 2 weeks I have developed severe hyperacusis. My tinnitus has increased and has become very reactive, becoming as loud or slightly louder than the 70 dB grocery freezers before going silent. Everyday has been worse than the last. So far in addition to the above:

I get a weird skin crawling/numb headache, facial pain, and dull achey pain in my ears. These occur when I hear any sound at all so today I've been in silence with exception of the bathroom, central AC vents, and whispering to my SO. Just his notification sound that went off while we were together sent my face into a jolt of pain.

I am in a very dark place right now so I am making a to do list.

1. Get family doctor to put me on TCAs.
2. Take a Leave of Absence from work.
3. ENT manual wax removal. Maybe buy olive oil and wait a bit to do this?
4. Audiogram and LDL test.
5. Get custom molded earplugs. Wear them for a while.
6. Live in as much quiet as possible. 2 weeks, a month?
7. Slowly start to reintroduce sound.
8. Find new hobbies. Say goodbye to my friends.

I really need a lot of help with 8. I can't just lie in bed all day napping with tv on 0. As of right now, my hobby relies on light conversation to work. I have to say goodbye to it and my friends, hopefully only for now.

I want to ry indoor gardening, see if I can focus enough on reading, and might buy a camera mouse. I can't do a lot of dextrous hobbies because of chronic pain so I can't do puzzles or coloring books even though I would like to.

Begging for help, advice, thoughts. Any words of encouragement or hope would mean a lot.

My h has improved significantly with adipose derived stem cells. One of my t sounds has completely disappeared.

Think about LLLT

Low dose naltrexone?

 

[Red]

Seems like a good plan. You may see if your doctor can write you a note to put you on medical leave (or short term disability). They may not, but it's worth a shot.

What's your current hobby that relies on light conversation?

It may not be as bad as yours, I don't have the pain, but I have very reactive tinnitus and I'm going through a spike right now too. What caused it? Playing a bored game with someone talking very loudly the entire time. I had earplugs in so it shouldn't be a dangerous volume, but it still gave me a spike and now I'm just hoping the spike is temporary. I found a bored gaming group that's a good social outlet that doesn't play loud music, but even that seems to be too much because of the few loud talkers I always end up with. This condition is very isolating. It can turn you into a recluse.

I'm not as optimistic about my plan as I sound. I enjoy the tabletop community, like Dungeons and Dragons. I previously played from the comfort of my home using speakers and a mouse. The volume of people is already very low in order to avoid echoing in my mic. Sitting through the previous session the other night, I was in pain the whole time.

I also rely on the sound of my voice to control my computer because like I said many times, I have chronic pain previous to this. Right now I am typing messages on my touchscreen which I will not be able to keep up forever.

 

[Alue]

I'm not as optimistic about my plan as I sound. I enjoy the tabletop community, like Dungeons and Dragons. I previously played from the comfort of my home using speakers and a mouse. The volume of people is already very low in order to avoid echoing in my mic. Sitting through the previous session the other night, I was in pain the whole time.

I also rely on the sound of my voice to control my computer because like I said many times, I have chronic pain previous to this. Right now I am typing messages on my touchscreen which I will not be able to keep up forever.

Were you in pain from the noise or from the movement? Either way I'm sorry to hear that.

I actually tried out the board gaming group in part from your recommendation. I thought you played tabletop games in person too, or is it all over the internet? I really like the group, but some people are just way too loud when they speak. I don't understand why people feel the need to shout when they are sitting right next to you.

With a facial pain I wonder if there is some other underlying cause besides noise. I'm not saying you don't have H / reactive tinnitus, it just sounds like you have a lot of other challenges. The facial pain isn't explained by hyperacusis.

Forgive me if this has been asked before, but have you ever ruled out multiple sclerosis or even something that mimics it like lupus?

 

[Red]

Were you in pain from the noise or from the movement? Either way I'm sorry to hear that.

I actually tried out the board gaming group in part from your recommendation. I thought you played tabletop games in person too, or is it all over the internet? I really like the group, but some people are just way too loud when they speak. I don't understand why people feel the need to shout when they are sitting right next to you.

With a facial pain I wonder if there is some other underlying cause besides noise. I'm not saying you don't have H / reactive tinnitus, it just sounds like you have a lot of other challenges. The facial pain isn't explained by hyperacusis.

Forgive me if this has been asked before, but have you ever ruled out multiple sclerosis or even something that mimics it like lupus?

I do not have those things as I have been tested for them through MRIs and autoimmune blood tests.

I've been living with facial pain for 3 years and I know its triggers. I know that as long as I avoided certain triggers, I could go into temporary remission. Over time I got better, making sure my remmissions stayed for longer. This year I had finally come to acceptance with both my cp and tinnitus.

When I play tabletop games on the internet, I do not exacerbate my pain if my pain is in remission. Which it is. Was?

I have read through the entire backlog of this forum and some of hyperacusis.net. From what I can tell, H affecting the trigemminal nerve is a symptom in painful H. All of my symptoms improve when I am in complete silence.

 

[Red]

My h has improved significantly with adipose derived stem cells. One of my t sounds has completely disappeared.

Think about LLLT

Low dose naltrexone?

I will look into these.

 

[MBH]

My son plays Maple story on internet that might help you.

How did you receive stem cell treatment, I thought I read about a poster also used stem cell. If it helps, that's great against hyperacusis. Hyperacusis can take a while to heal, its not easy to overcome, but I think you can do it. You are dealing with a double ailment, so it's hard to work on both. I wouldn't give up on work, if you do you can risk your benefits, also if you can do it on the low, do so. It keeps you going even thru you don't think so.

Keep healing yourself everyday.

 

[Taylorslay]

@Red what happened? I'm sorry to hear about your Hyperacusis getting worse. But is there anything in particular that caused it to get worse?

 

[Red]

@Red what happened? I'm sorry to hear about your Hyperacusis getting worse. But is there anything in particular that caused it to get worse?

I watched a video on my phone that featured real gunshots. I also got a cold but I doubt that has anything to do with hyperacusis. Maybe tinnitus, but not hyperacusis. It wasn't a bad cold just lots of coughing and some congestion. I wouldn't be surprised if my anxiety/depression were making it worse though.

 

[dpdx]

I watched a video on my phone that featured real gunshots. I also got a cold but I doubt that has anything to do with hyperacusis. Maybe tinnitus, but not hyperacusis. It wasn't a bad cold just lots of coughing and some congestion. I wouldn't be surprised if my anxiety/depression were making it worse though.

Did you watch a video on your phone using earbuds?

 

[Red]

Did you watch a video on your phone using earbuds?

No. I do not use earbuds or anything related.

 

[Taylorslay]

No. I do not use earbuds or anything related.

That's so strange. Because a phone shouldn't get louder than maybe 90db. And I doubt you had it loud. But never the less it caused you problems. And that cold mat have something to do with it. I can't remember who but someone mentioned a while back how they has a cold and for some reason their H got better. I think it was a post by @TheDanishGirl . I'm assuming it may go both ways but I'm simply speculating.

I had a cold that involved a lot of congestion not long ago and my H had a spike. I could tell there was a lot of fluid in my ears because my Tinnitus was much worse. However my spike could have been a result of many things. Medication, me not wearing protection when needed or the cold. It's probably a mix of things.

 

[TheDanishGirl]

That's so strange. Because a phone shouldn't get louder than maybe 90db. And I doubt you had it loud. But never the less it caused you problems. And that cold mat have something to do with it. I can't remember who but someone mentioned a while back how they has a cold and for some reason their H got better. I think it was a post by @TheDanishGirl . I'm assuming it may go both ways but I'm simply speculating.

I had a cold that involved a lot of congestion not long ago and my H had a spike. I could tell there was a lot of fluid in my ears because my Tinnitus was much worse. However my spike could have been a result of many things. Medication, me not wearing protection when needed or the cold. It's probably a mix of things.

That's correct, when I had a cold the H went 90% away. I also had a day a while ago where it went away almost completely, but now it is back at a fairly bad level and has been so for some time.

 

[Juan]

I watched a video on my phone that featured real gunshots. I also got a cold but I doubt that has anything to do with hyperacusis. Maybe tinnitus, but not hyperacusis. It wasn't a bad cold just lots of coughing and some congestion. I wouldn't be surprised if my anxiety/depression were making it worse though.

Your body is over-reacting. The sound of a cellphone is very annoying and usually really bad quality, therefore its not nice sound to have around. However, the sound is unlikely to be loud enough to make damage and that's why this is an over-reaction.

Try to do things that keep you busy and not focused on sound. The colouring books were a good idea, try doing some painting and have the radio on the background, an old analog radio. To turn the radio on and off, tune it and choose the volume use earplugs or earmuffs, and then sit at a distance with the radio on the background. That sound should be gentle on ears. The point is NOT listening to the radio but having sound on the background while you do another thing that takes your full attention (painting, or gardening, or whatever). Give it a try!

Just wanted to add: try to stretch at home and physiotherapy. It could help with facial pain etc Also that sort of pain may come from the neck or shoulders, irradiated pain.

 

[Red]

Your body is over-reacting. The sound of a cellphone is very annoying and usually really bad quality, therefore its not nice sound to have around. However, the sound is unlikely to be loud enough to make damage and that's why this is an over-reaction.

Possibly. I was mostly relaxed days leading up to where I realised something was wrong. But then again, anxiety is weird. Forced positivity is often still anxiety. (Referring to my days prior to hyperacusis realization, not your advice)

No matter how I got it, I have it now. I'm cautiously hoping that at least the facial pain aspect is anxiety based.

 

[kelpiemsp]

Possibly. I was mostly relaxed days leading up to where I realised something was wrong. But then again, anxiety is weird. Forced positivity is often still anxiety. (Referring to my days prior to hyperacusis realization, not your advice)

No matter how I got it, I have it now. I'm cautiously hoping that at least the facial pain aspect is anxiety based.

Facial pain is almost all anxiety based. I got to spend 3 days with specialists in TMJ and chronic facial pain during a surgical consult at the Mayo Clinic. During my time there, they explained to me in detail how pain, while very real, is often created by and reinforced by a maladaptive feedback loop in our brain. Anyways, if you are struggling with facial pain the book: Explain the Pain by Lorimer Moseley has changed my life.

 

[Juan]

Facial pain is almost all anxiety based. I got to spend 3 days with specialists in TMJ and chronic facial pain during a surgical consult at the Mayo Clinic. During my time there, they explained to me in detail how pain, while very real, is often created by and reinforced by a maladaptive feedback loop in our brain. Anyways, if you are struggling with facial pain the book: Explain the Pain by Lorimer Moseley has changed my life.

What was the advice at the Mayo Clinic to deal with facial pain?

 

[Juan]

Possibly. I was mostly relaxed days leading up to where I realised something was wrong. But then again, anxiety is weird. Forced positivity is often still anxiety. (Referring to my days prior to hyperacusis realization, not your advice)

No matter how I got it, I have it now. I'm cautiously hoping that at least the facial pain aspect is anxiety based.

I dont think hyperacusis has anything to do with anxiety. Maybe hyperacusis makes you anxious, it is a consequence of hyperacusis, as it could be the consequence of any stressful or extreme experience.

However, only objectively loud sound is likely to damage your hearing further or make hyperacusis worse. Other sounds can give you a temporary spike but it should fade away.

 

[Juan]

I dont think hyperacusis has anything to do with anxiety; anxiety is not the cause of hyperacusis. Maybe hyperacusis makes you anxious, it is a consequence of hyperacusis, as it could be the consequence of any stressful or extreme experience.

However, only objectively loud sound is likely to damage your hearing further or make hyperacusis worse. Other sounds can give you a temporary spike but it should fade away.

 

[kelpiemsp]

What was the advice at the Mayo Clinic to deal with facial pain?

I have bone on bone in both jaw joints with permanently dislocated cartilage. They recommend yoga, meditation, and anti depressants.

 

[Juan]

I have bone on bone in both jaw joints with permanently dislocated cartilage. They recommend yoga, meditation, and anti depressants.

I see, so it was obviously a TMJ problem that caused the hearing issues.

 

[Contrast]

If anyone commits suicide because of hyperacusis please request your inner ear and audiotory nerve be donated to research. you could be remembered as the hyperacusis jesus or something

 

[Layla23]

@Red
Wait why can't you draw? Is it too painful to turn the pages? (I've had this too but went away with time)

I've had my tinnitus spike because of a cellphone that wasn't louder than 70 decibels. So I get what you're saying HOWEVER, I really really really strongly believe it was your cold that gave you H. I think everyone on this board (myself included) often forget how damaging other things are besides just noise (dare I say even more damaging?).

The cold could have caused fluid build up or inflammation to your ears....which can easily give you H. Even people with normal ears said they got their H or T from one bad ear infection or viral infection.

 

[Layla23]

@robHing
What do you mean your reactive tinnitus is getting worse? As in it's louder now when it does react or does it react more easily?

 

[robHing]

My reactive tinnitus is very easily spiked.
The tinnitus is louder now.

 

[Red]

@Red
Wait why can't you draw? Is it too painful to turn the pages? (I've had this too but went away with time)

I've had my tinnitus spike because of a cellphone that wasn't louder than 70 decibels. So I get what you're saying HOWEVER, I really really really strongly believe it was your cold that gave you H. I think everyone on this board (myself included) often forget how damaging other things are besides just noise (dare I say even more damaging?).

The cold could have caused fluid build up or inflammation to your ears....which can easily give you H. Even people with normal ears said they got their H or T from one bad ear infection or viral infection.

I can't do repetitive or dexterous motions very well without causing me pain. This is something I had before T and H and has been a large source of sadness in my life. As it too restricts what jobs I can do and hurts my ability to cope.

I am going to see a doctor on Mon/Tues because I am definitely having ear problems in general, earwax impaction (made worse by how much I've been crying), probably eardrum rupture, probably ear infection...Sigh. Just have to make it through tomorrow.

 

[Michael Leigh]

@Red

I am sorry to hear of the discomfort that you continue to be in with tinnitus and hyperacusis. I was in a very similar position to you many years ago when I got these conditions, so I know the impact that they can have on a person's daily life and their emotional well-being.

The answer to treating hyperacusis isn't to keep away from sound and to be in a quiet environment. Nor is it beneficial to use hearing protection in the manner that you describe in your to do list. Unfortunately much of it I disagree with even though you believe it to be helpful. The auditory system needs constant input from outside sounds to help desensitize it's over sensitivity. Keeping away from sounds will only make it more sensitive due to a lowering of the loudness threshold of the auditory system.

Equally important is the psychological impact that your methods will have on you if you are not careful. Conditions such as Phonophobia and Misophonia can creep and you may not realize this until it's too late. Please read my post: The complexities of tinnitus and hyperacusis: https://www.tinnitustalk.com/threads/the-complexities-of-tinnitus-and-hyperacusis.25733/

I believe your symptoms go beyond self help and now require professional intervention with a Hearing Therapist or Audiologist that specialises in the treatment and management of tinnitus and hyperacusis, if you are able to get a referral. This requires a combination of sound therapy using white noise generators and other sources of sound enrichment to help desensitize your auditory system. Counselling and possibly medication, to help with any stress and anxiety that I believe you have, as a result of having these conditions.

I wish you well.

Michael

PS: Anyone wanting to try self-help with hyperacusis, please read my post: Hyperacusis, As I see it:

https://www.tinnitustalk.com/threads/hyperacusis-as-i-see-it.19174/

 

[Alue]

Facial pain is almost all anxiety based. I got to spend 3 days with specialists in TMJ and chronic facial pain during a surgical consult at the Mayo Clinic. During my time there, they explained to me in detail how pain, while very real, is often created by and reinforced by a maladaptive feedback loop in our brain. Anyways, if you are struggling with facial pain the book: Explain the Pain by Lorimer Moseley has changed my life.

A negative feedback loop doesn't necessarily mean it's anxiety based.