extreme outer ear pain

Posted by ellienewfan @ellienewfan, Feb 4, 2013

Please….someone help me.

I’ve visited my allergist, an ear-nose-throat specialist and my own internist.
None of them have ever heard of my problem and don’t know how to help me.

Started approx 20 yrs ago, Every couple of months I would get an awful pain on one of my ears if I had been laying on it during the night. It would happen to either ear, whichever one I laid on.

To describe the pain. It is so intense that it wakes me. Pain is NOT inside the ear but around the edges of the entrance of it. It is so painful, I can’t touch it. It will be throbbing. It also hurts tremendously behind, towards the bottom back of the ear. Can’t touch that either. The only thing that will make it go away is when I then get up and stand and within approx 30 min it is gone. I even tested it by massaging behind the ear (once I could bear to touch it) and it seemed to make pain go away faster.

The last approx 3 years, I have no longer been able to even lay on either ear when in bed because now the pain will come every time. I have learned to sleep on my back. Sometimes I would still move onto my side during night, and wake up with pain.

For last 6 months, I’ve been having pressure and achy feeling around one of the ears, even while laying on my back. Then I started getting the pain even while sleeping on my back.

I am very much afraid that the day will come when I will no longer be able to lay down in my bed to go to sleep.

I am desperate to get to the bottom of this and perhaps for first time in 20 years be able to comfortably lay on my side in bed.

My ENT doctor said my ears are healthy …. i have no hearing loss.

This ear pain, however, is starting to affect my daily living, since I don’t seem to be able to get the restful sleep I need.

I will be forever grateful if someone could pinpoint this. thanks.

I can't have anything in or covering my ears. The pain is so excruciating with just wearing headphones for just 30 minutes gives me days of pain. Been that way all my life. It's both ears. I can't even cup my hand over them. The pain is so intense it ridiculous.

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@pant

I can't have anything in or covering my ears. The pain is so excruciating with just wearing headphones for just 30 minutes gives me days of pain. Been that way all my life. It's both ears. I can't even cup my hand over them. The pain is so intense it ridiculous.

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Meloxicam is amazing to help with this.

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@nibor63

Meloxicam is amazing to help with this.

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It indeed helps the pain, absolutely

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I am 46 and have been experiencing pain on the outside cartilage of my ears for about a year now. It's sporadic and I thought the outer ear was getting folded or something at first. Not so. One side will hurt and then I'll turn over to get the pain to go away. I don't think it's just the right or left ear. I believe it happens to both. The pain goes away when I wake up and rotate to my back or other side. I think the pain is worse when I'm traveling. Using other pillows and regular beds seems to make the pain more frequent. I have a water bed at home, but I do get occasional pain at home as well. Thanks to everyone who has posted. I thought maybe I was the only one with this crazy pain. I'm going to try the calcium.

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@nibor63

Meloxicam is amazing to help with this.

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Interesting. Now that I think of it, earphones or earbuds hurt my ears as well. Thanks for the insight. I wonder if my pain is worse after using them on airplanes and such. The pain is more frequent when I travel and that's the only time I use earbuds.

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@46momof5

I am 46 and have been experiencing pain on the outside cartilage of my ears for about a year now. It's sporadic and I thought the outer ear was getting folded or something at first. Not so. One side will hurt and then I'll turn over to get the pain to go away. I don't think it's just the right or left ear. I believe it happens to both. The pain goes away when I wake up and rotate to my back or other side. I think the pain is worse when I'm traveling. Using other pillows and regular beds seems to make the pain more frequent. I have a water bed at home, but I do get occasional pain at home as well. Thanks to everyone who has posted. I thought maybe I was the only one with this crazy pain. I'm going to try the calcium.

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I take Meloxicam. Helps me.

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@becky65

I have Autoimmune Inner Ear Disease. My otolaryngologist is pretty much at a loss with me. He sent me to another doctor at West Virginia University that specializes in this, but he couldn't help either. He prescribed Nortriptyline (Pamelor), but I had an allergic reaction and had to stop. He then said to just wait it out and see what happens. He thinks my migraines trigger my ear pain, but it's actually the other way around. When my ear pain gets real bad, it triggers a migraine. I know that steroids and methotrexate can help, but I am already taking both for pulmonary sarcoidosis. These meds aren't doing anything for my ears. I still have a lot of pain and issues with my hearing. Sometimes it's hyperacusis, sometimes I have a lot of problems hearing anything. My ENT told me that eventually I could lose my hearing altogether. Does anyone have any suggestions to at least help with the pain? Thanks.

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@becky65 Welcome to connect we all try to tell what helps us Is your ear pain inner ear or outside of ear?

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@becky65

I have Autoimmune Inner Ear Disease. My otolaryngologist is pretty much at a loss with me. He sent me to another doctor at West Virginia University that specializes in this, but he couldn't help either. He prescribed Nortriptyline (Pamelor), but I had an allergic reaction and had to stop. He then said to just wait it out and see what happens. He thinks my migraines trigger my ear pain, but it's actually the other way around. When my ear pain gets real bad, it triggers a migraine. I know that steroids and methotrexate can help, but I am already taking both for pulmonary sarcoidosis. These meds aren't doing anything for my ears. I still have a lot of pain and issues with my hearing. Sometimes it's hyperacusis, sometimes I have a lot of problems hearing anything. My ENT told me that eventually I could lose my hearing altogether. Does anyone have any suggestions to at least help with the pain? Thanks.

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Hello @becky65, I would like to add my welcome to Connect along with @lioness. I know it must be frustrating not being able to find something that works and being in pain a lot with no answers. I'm tagging our moderator @ethanmcconkey to see if we should move your post to the following discussion where other members are discussing similar symptoms and your post will have more visibility.

> Groups > Ear, Nose & Throat (ENT) > extreme outer ear pain
https://connect.mayoclinic.org/discussion/extreme-outer-ear-pain/

I had not heard of hearing being attacked by an autoimmune disease but a little searching confirmed that it can happen. Here's what I found on the American Speech-Language-Hearing Association website.

Autoimmune Inner Ear Disease
https://www.asha.org/Articles/Autoimmune-Inner-Ear-Disease/

Are you able to share a little more about your diagnosis or symptoms?

Liked by lioness, becky65

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I have Autoimmune Inner Ear Disease. My otolaryngologist is pretty much at a loss with me. He sent me to another doctor at West Virginia University that specializes in this, but he couldn't help either. He prescribed Nortriptyline (Pamelor), but I had an allergic reaction and had to stop. He then said to just wait it out and see what happens. He thinks my migraines trigger my ear pain, but it's actually the other way around. When my ear pain gets real bad, it triggers a migraine. I know that steroids and methotrexate can help, but I am already taking both for pulmonary sarcoidosis. These meds aren't doing anything for my ears. I still have a lot of pain and issues with my hearing. Sometimes it's hyperacusis, sometimes I have a lot of problems hearing anything. My ENT told me that eventually I could lose my hearing altogether. Does anyone have any suggestions to at least help with the pain? Thanks.

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Hi @becky65 I wanted to join @lioness and @johnbishop in welcoming you to Connect. You may have noticed I moved your post to this existing discussion on outer ear pain so that you can connect with others with similar experience as @johnbishop suggested.

Could we hear more about your symptoms?

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@lioness

@becky65 Welcome to connect we all try to tell what helps us Is your ear pain inner ear or outside of ear?

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My pain in the inner ear. Usually it's both of them. always feels like I have ice picks being jammed in there.

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@johnbishop

Hello @becky65, I would like to add my welcome to Connect along with @lioness. I know it must be frustrating not being able to find something that works and being in pain a lot with no answers. I'm tagging our moderator @ethanmcconkey to see if we should move your post to the following discussion where other members are discussing similar symptoms and your post will have more visibility.

> Groups > Ear, Nose & Throat (ENT) > extreme outer ear pain
https://connect.mayoclinic.org/discussion/extreme-outer-ear-pain/

I had not heard of hearing being attacked by an autoimmune disease but a little searching confirmed that it can happen. Here's what I found on the American Speech-Language-Hearing Association website.

Autoimmune Inner Ear Disease
https://www.asha.org/Articles/Autoimmune-Inner-Ear-Disease/

Are you able to share a little more about your diagnosis or symptoms?

Jump to this post

I have researched this over and over. I'm at a loss. I feel like I'm being ignored just because no one knows what to do. Sometimes I wish my hearing WOULD be gone……only if it alleviates the pain.
I also have dizziness and some nausea….but these are only when the pain gets real bad.

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@becky65

I have researched this over and over. I'm at a loss. I feel like I'm being ignored just because no one knows what to do. Sometimes I wish my hearing WOULD be gone……only if it alleviates the pain.
I also have dizziness and some nausea….but these are only when the pain gets real bad.

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@becky65 Have you seen a ear Dr. I just did and he sent me for more testing ,a 2hr test I'm not sure what it's called but results where nerve damage The original ear Dr had me do ear exercises 2-3x s day It worked my balance problems where gone and dizziness also Ask ear Dr about going to take a ventricular test I think that's what it was called

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@ethanmcconkey

Hi @becky65 I wanted to join @lioness and @johnbishop in welcoming you to Connect. You may have noticed I moved your post to this existing discussion on outer ear pain so that you can connect with others with similar experience as @johnbishop suggested.

Could we hear more about your symptoms?

Jump to this post

Started out as ear pain in cartilage of ear with pressure. Either war. Also turns bright red. Then started having pain in back and right foot, then both with pressure. Next bowel issues started (chronic diahrea), all day, every day. Several doctors told me it was ALL in my head. One even used the crazy sign. Had every test imaginable, with only finding out that I have systemic inflammation. Don't know what is causing it. Blood work, blood pressure, blood sugar, cholesterols, all normal. Never took medication, until 2 years ago when this all started. Now I am on an anti-inflammatory, and it helps, but not a cure. Just a bandaid. Can now sleep through the night, with little disturbance. Use soft pillow. NO memory foam or firm pillow. Diahrea is also being caused by pressure on the body. Soft mattress helps. Started taking medication for migraines, although I don't have them. Something to do with affect on blood vessels. Totally changed my bowel issues. Foot pain is now more periodic since starting anti-inflammatory and back pain is virtually gone. Now experiencing severe wrist pain that won't go away. Hope this helps somebody.

Liked by lorious

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Ellie, I also suffered from ear pain and actual sores around the outside edges of both ears. Since I am a left side sleeper, it was worse on that side. So extremely sore it was very painful to the touch. Through research, i found out they are called pressure sores.
My daughter researched on line and got me a special pillow that actually has 2 holes in it. You position your ear over the hole to relieve the pressure. I know it sounds weird, but I slept on it for a month and it cleared up the pain and the sores. I do hope this will help you. Wayfarer

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