Hyperacusis Headaches (22-Year-Old) — 5 Months On

[sydneygirl]

Hi everyone,

For context, I've had tinnitus since I was 13 (I am 22). I had my first spike at 20, then 22 again, and was lucky enough to habituate. However, 5 months ago I went out to a loud bar and did not have hearing protection and I have regrettably developed hyperacusis.

Throughout the 5 months, I have experienced a combination of these symptoms DAILY:
- Chronic ear pain in my left ear that never goes away. Pain in right ear too at times, but not as much
- Constant headaches, especially pains in the eyes making it very hard to stay awake/concentrate
- Dizziness and disorientation at times
- Feeling constantly fatigued and tired due to pain of headaches

For reference I've also done an MRI (all clear), and am taking 10mg of ENDEP for migraines however I don't take them frequently due to forgetting/ bad side effects such as dizziness, loss of appetite, etc.

I'm also currently one month in of using sound generators (I try to use them everyday) but honestly finding it so painful to use them as it makes the headaches and ear pain even worse due to sound directly entering my ear. (I know this is the point of the generators but it makes concentrating at work hard so I take them out at times)

Despite all of these really horrible symptoms, I am hopeful that I will overcome this Just as I habituated to tinnitus twice when I thought I wouldn't be able to, I can also over come the hyperacusis, I know it will take time. It is definitely hard, especially as I feel so tired everyday.

I just wanted to hear if anyone has treated their chronic headaches and would love to hear about any improvement/ success stories, this really keeps me going. I appreciate your thoughts in advance. Hyperacusis is really such an invasive condition. I feel it is hard to feel as happy as the person I used to be, when I'm in physical pain everyday. But I am hopeful for a recovery

 

[Juan]

Hi everyone,

For context, I've had tinnitus since I was 13 (I am 22). I had my first spike at 20, then 22 again, and was lucky enough to habituate. However, 5 months ago I went out to a loud bar and did not have hearing protection and I have regrettably developed hyperacusis.

Throughout the 5 months, I have experienced a combination of these symptoms DAILY:
- Chronic ear pain in my left ear that never goes away. Pain in right ear too at times, but not as much
- Constant headaches, especially pains in the eyes making it very hard to stay awake/concentrate
- Dizziness and disorientation at times
- Feeling constantly fatigued and tired due to pain of headaches

For reference I've also done an MRI (all clear), and am taking 10mg of ENDEP for migraines however I don't take them frequently due to forgetting/ bad side effects such as dizziness, loss of appetite, etc.

I'm also currently one month in of using sound generators (I try to use them everyday) but honestly finding it so painful to use them as it makes the headaches and ear pain even worse due to sound directly entering my ear. (I know this is the point of the generators but it makes concentrating at work hard so I take them out at times)

Despite all of these really horrible symptoms, I am hopeful that I will overcome this Just as I habituated to tinnitus twice when I thought I wouldn't be able to, I can also over come the hyperacusis, I know it will take time. It is definitely hard, especially as I feel so tired everyday.

I just wanted to hear if anyone has treated their chronic headaches and would love to hear about any improvement/ success stories, this really keeps me going. I appreciate your thoughts in advance. Hyperacusis is really such an invasive condition. I feel it is hard to feel as happy as the person I used to be, when I'm in physical pain everyday. But I am hopeful for a recovery

I'd try to focus on exercise (including stretching), physiotherapy, and diet. That can make a difference if your problem is not too severe.

As you are describing it I find two things shocking: 1) too much time with chronic symptoms non-stop; have you had any good days during this 5 month period when you felt slightly better?, when you say "chronic" ear pain, you do not mean "constant" ear pain, do you? Because you said that pain "never goes away" and 2) your hyperacusis, as you describe it, does not sound very severe, so back to point 1). Are you sure you have hyperacusis?

 

[sydneygirl]

Hi Juan, thanks for your reply.

To start off, I definitely do have hyperacusis, I have been to a hyperacusis specialist here in Sydney, Australia that has confirmed this.

I definitely have 'good days' where it is not as painful as the rest of the days, however even on a good day the headaches are still present, and are painful and the sound sensitivity is there.

I'd say on a regular day I have the constant feeling of headaches and ear pain, and on bad days, I'll have cluster headaches where my eyes hurt, and intensified headaches where I feel dizzy.

The ear pain is constant - my apologies, that would be a better word.

 

[Juan]

Hi Juan, thanks for your reply.

To start off, I definitely do have hyperacusis, I have been to a hyperacusis specialist here in Sydney, Australia that has confirmed this.

I definitely have 'good days' where it is not as painful as the rest of the days, however even on a good day the headaches are still present, and are painful and the sound sensitivity is there.

I'd say on a regular day I have the constant feeling of headaches and ear pain, and on bad days, I'll have cluster headaches where my eyes hurt, and intensified headaches where I feel dizzy.

The ear pain is constant - my apologies, that would be a better word.

Can you be outside home without earplugs? Can you walk on a busy street, near traffic, without hearing protection?

I can recommend several home "exercises": listening to white noise through speakers, listening to the TV while playing white noise on the background, to take the edge of nasty sounds that your ears dont like. In general, it is better to have some background sound to reduce the dynamic range with peak sounds. Water sounds are good, strolling by the seaside feels good, and the sound of the sea (not when there are big waves) is soothing. Actually garden design for instance puts in practice a lot of ideas about background sound, relaxing sounds, use of water as a background sound...

 

[arctic loon]

I'd recommend you to stop trt if its hurting you. Wear earplugs/muffs and give your ears a chance to heal. Dont expose yourself to sounds that hurt you! Make your surroundings as quiet as you need to be comfortable. Your ears are damaged and your h will progress if you keep exposing yourself to sounds. And there really is no limit to how bad it can get.

I went the sound enrichment route and now my LDL is so low its making my life torture. Save yourself while you still can. I wouldve been saved if i knew to give my ears a proper rest but now they are beyond repair.

 

[Zugzug]

Sigh.

Hi everyone,

For context, I've had tinnitus since I was 13 (I am 22). I had my first spike at 20, then 22 again, and was lucky enough to habituate. However, 5 months ago I went out to a loud bar and did not have hearing protection and I have regrettably developed hyperacusis.

Throughout the 5 months, I have experienced a combination of these symptoms DAILY:
- Chronic ear pain in my left ear that never goes away. Pain in right ear too at times, but not as much
- Constant headaches, especially pains in the eyes making it very hard to stay awake/concentrate
- Dizziness and disorientation at times
- Feeling constantly fatigued and tired due to pain of headaches

For reference I've also done an MRI (all clear), and am taking 10mg of ENDEP for migraines however I don't take them frequently due to forgetting/ bad side effects such as dizziness, loss of appetite, etc.

I'm also currently one month in of using sound generators (I try to use them everyday) but honestly finding it so painful to use them as it makes the headaches and ear pain even worse due to sound directly entering my ear. (I know this is the point of the generators but it makes concentrating at work hard so I take them out at times)

Despite all of these really horrible symptoms, I am hopeful that I will overcome this Just as I habituated to tinnitus twice when I thought I wouldn't be able to, I can also over come the hyperacusis, I know it will take time. It is definitely hard, especially as I feel so tired everyday.

I just wanted to hear if anyone has treated their chronic headaches and would love to hear about any improvement/ success stories, this really keeps me going. I appreciate your thoughts in advance. Hyperacusis is really such an invasive condition. I feel it is hard to feel as happy as the person I used to be, when I'm in physical pain everyday. But I am hopeful for a recovery

Although my hyperacusis is different, I also get the headaches. Oddly, they even sound similar to yours. Typically, if I am in silence, they go away. Then when I'm around sound or talk, they start. Like you, it is pain around my eye muscles. Strange!

I am still recovering, but I want to throw out some opinions since I have seen patterns that produce major progress. I think TRT/sound therapy/CBT etc. has value, but people push it too hard for a narrative. I wholeheartedly disagree with the concept of "no pain, no gain." Let me explain.

When I first developed hyperacusis, it was minor; I didn't wear earplugs or do anything about it. Over the course of several months of using headphones, my condition slowly got worse until it blew up to severe hyperacusis. According to a TRT person, you cannot make your condition worse by enjoying sounds under 85 decibels. This is simply not true for a lot of us.

Then I got serious about taking precautions. While I also did light sound therapy, I saw my condition improve significantly (30% in a month; which is a miracle by hyperacusis standards). I knew in the back of my mind that it was probably my body's own healing, but I attributed a lot of it to the sound therapy. One day, I put the headphones back on and was actually enjoying music. A sound therapist will tell you that is exactly where you want to be - positive feelings towards sound and thinking about your condition less. In theory, my brain should be retrained, I should be habituated, etc.

Within a few days, my condition blew up again to about as bad as it was at the beginning. When I told my doctor this, he tried to say it was "unheard of" and even suggested it could be random. Really? A month and a half of massive progress and coincidentally, I use headphones and it blows up completely?

I am slowly getting it back by taking lots of precautions. In summary, every time I get too high on "push through the sound" and "mind over matter" my condition blows up. Every time I listen to my body, my problem gets better. I believe we have to put ourselves ahead of a narrative. At the same rate, if TRT really does help you (some people report this), by all means, keep doing it. We are all different.

 

[Mister Muso]

5 months of H for me too, but not so many headaches although I suffered from those in my 20s and 30s.

Have you tried amitriptyline? It's helped my H become more manageable.