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.

@celesteh77

@ellienewfan I read your post from Feb 4, 2013. I am 81 years of age and have had the same pain as you for 20 years. All your symptoms are exactly the same as mine. In the past 6 years, since your post, have you gotten anyone to tell you what to do for the pain. Has it ever improved. Thank you for responding…

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On Tuesday, January 29, 2019, Mayo Clinic Connect wrote:

Have not gotten any answers. However since i wrote the initial info re the pain my left ear has miraculously "healed" itself. Pain is gone. Right ear however has gotten worse. Now right ear pain starts when i lay down and touch it. Even without laying on it. So I'm very careful not to lay on it. Here's some insight. Was at new ENT doc's office for unrelated issue. He had drawing of outer ear on wall. Back side of ear. Right where i have pain it showed some elongated different areas. Asked him what it is. Told him about my pain and how it crackles when i rub there while i have pain. He said it is cartilage. And sometimes that can get inflamed. And crackling is cartilage breaking up. First dr to say this. And I've had number of tests. No answer on cause however. Or any treatment. We'll prob have it til we die. Celeste i have tested various things to do for pain relief. I used to get up out of bed when i accidentally slept on an ear and wake up with excruciating pain. I'd stay up about 5 min and it would b gone. Funny being upright took pain away. Now i stay in bed and start rubbing area. Gently at first because it is so painful. Then start rubbing more forcefully, i hear the crackling, and the pain goes away very quickly. U might want to try. ENT dr said very high thread pillowcases will keep pain away. I'm doubtful. Have not purchased yet but will in near future. I'll try anything.
I have had this for at least 25 yrs. I'm 75 myself. See no total relief in sight. Then again my left ear is fine now. Go figure. Sorry i couldn't give u better news. Try the rubbing. It really works.
Mayo Clinic Connect
@celesteh77 mentioned you in extreme outer ear pain on Tue, Jan 29

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@ellienewfan I read your post from Feb 4, 2013. I am 81 years of age and have had the same pain as you for 20 years. All your symptoms are exactly the same as mine. In the past 6 years, since your post, have you gotten anyone to tell you what to do for the pain. Has it ever improved. Thank you for responding…
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I hope this goes viral. I saw an ENT last week, and she said I have a dry nose, and told me to use a nasal spray with gel. That did nothing. Today, I saw my Primary Doctor, and his Nurse PA said,: I know what you have.. it's called AURICULAR CHONDRITIS… She has it, and so does her mother. She said they have been using a pillow with a hole in the center. She told me to Google "pillow with hole", or go to Amazon, and write in "The original pillow with a hole". Seems when you lay on the side of your ear, you are putting pressure on that part of your ear, and this causes that cartilage. I am going to order the pillow now…here's hoping it works.. and I hope you can share what I just learned. Celeste

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@celesteh77

I hope this goes viral. I saw an ENT last week, and she said I have a dry nose, and told me to use a nasal spray with gel. That did nothing. Today, I saw my Primary Doctor, and his Nurse PA said,: I know what you have.. it's called AURICULAR CHONDRITIS… She has it, and so does her mother. She said they have been using a pillow with a hole in the center. She told me to Google "pillow with hole", or go to Amazon, and write in "The original pillow with a hole". Seems when you lay on the side of your ear, you are putting pressure on that part of your ear, and this causes that cartilage. I am going to order the pillow now…here's hoping it works.. and I hope you can share what I just learned. Celeste

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Reasearched info on auricular CHONDRITIS. That is NOT my condition. If you Look at pics of ppl w that condition u will notice they're talking about all the cartilage in outer area of ear and will c total redness of ear. That condition sounds serious w danger of losing cartilage. It is not something u can have for 20 some yrs without serious consequences. My pain is behind ear where ear connects w skull. But perhaps thats what u have. I doubt it though. Didn't u say you had it forever? PA's have habit of giving ppl diagnoses when it shd b dr that does it. U SHD discuss w ur dr. Pillow is great idea. I'll research. Thanx

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I have had this off and on for about 10 years. Since I moved from NYC to Florida it got worse on Cold days/nights. I'm going to try the pillow. WHen I Googled that pillow it said it is perfect to help with the pain on the cartilage. The full name of what I have is Chondrodermatitis. I hope you can try the pillow…The nurse is also a PA,and as I mentioned both she and her mother have the same condition. I hope this helps you.. try the pillow.

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@celesteh77

I have had this off and on for about 10 years. Since I moved from NYC to Florida it got worse on Cold days/nights. I'm going to try the pillow. WHen I Googled that pillow it said it is perfect to help with the pain on the cartilage. The full name of what I have is Chondrodermatitis. I hope you can try the pillow…The nurse is also a PA,and as I mentioned both she and her mother have the same condition. I hope this helps you.. try the pillow.

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Thanks😄

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@jfortinofish1

i am 75 just started getting this outer ear pain while sleeping it wakes me and it only on outer ear cartlidge, and not even laying on it? what is causing it?

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Hi, I just found out it's called Chondrodermatitis…caused by the pressure of the pillow on the ear. They found out there is a pillow, called "The original pillow with a hole", made in England. Cost $66 on Amazon. The ear fits nicely in that pillow hole, and will get rid of that horrific pain. Google "pillow with hole" and you can see videos how it works.

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@celesteh77

Hi, I just found out it's called Chondrodermatitis…caused by the pressure of the pillow on the ear. They found out there is a pillow, called "The original pillow with a hole", made in England. Cost $66 on Amazon. The ear fits nicely in that pillow hole, and will get rid of that horrific pain. Google "pillow with hole" and you can see videos how it works.

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Thanks celeste. Will do. Appreciate ur time researching.

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ellenewfan.. I have arranged my pillow so that it doesn't press on my ear.. That was 2 nights ago.. So far I have had NO pain… None in the ear. Have ordered the "Pillow with a hole", and am anxious to get it. Best to you.

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I am so glad I am not alone in this struggle! Although I have the ear pain from sleep I’ve recently begun to have this pain come on during the day for no apparent reason with the same symptoms. The severe shooting pain on my ear and behind my ear, extreme sensitivity to touch and aching. I’m very afraid of what this could be. I’m also at a loss for who to even ask for help. It’s the craziest thing I’ve ever felt and heard of. It’s almost embarrassing. Has anyone else experienced this while not sleeping or have been asleep? Has anyone gotten any solid answers to what may cause this?

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@gemma2013

I am so glad I am not alone in this struggle! Although I have the ear pain from sleep I’ve recently begun to have this pain come on during the day for no apparent reason with the same symptoms. The severe shooting pain on my ear and behind my ear, extreme sensitivity to touch and aching. I’m very afraid of what this could be. I’m also at a loss for who to even ask for help. It’s the craziest thing I’ve ever felt and heard of. It’s almost embarrassing. Has anyone else experienced this while not sleeping or have been asleep? Has anyone gotten any solid answers to what may cause this?

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I have been pain free about a week now. I have posted to others on this site, and I'm happy to share with you, too. I went to my primary and the nurse PA, said, "Oh, I have that, and my mother has it, too". She said, it is the pillow that is pressing on the edge of the cartilage and they both bought (from Amazon, "The original pillow with a hole". I ordered it, and because it ships from England I am waiting another week for delivery. (Go on Google and type in "Pillow with a Hole", and a video will show you how it works.) Meantime, since I learned this, I tested my own pillow at home and when I went to bed, I pushed as much of the pillow off my ear edge…and for a week now I haven't had any discomfort, or pain or anything. It will be much easier to sleep when my ear is placed in the hole when I get the pillow made just to help this purpose. BTW, I've suffered with that pain for about 15 years, and as I said.. one whole week with no pain…I hope this information helps you.

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@ellienewfan

Reasearched info on auricular CHONDRITIS. That is NOT my condition. If you Look at pics of ppl w that condition u will notice they're talking about all the cartilage in outer area of ear and will c total redness of ear. That condition sounds serious w danger of losing cartilage. It is not something u can have for 20 some yrs without serious consequences. My pain is behind ear where ear connects w skull. But perhaps thats what u have. I doubt it though. Didn't u say you had it forever? PA's have habit of giving ppl diagnoses when it shd b dr that does it. U SHD discuss w ur dr. Pillow is great idea. I'll research. Thanx

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Pillow isn’t worth the money!! I bought it for the same problem but it is very uncomfortable and didn’t help at all! Money wasted

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DId your pillow come from England? Did it cost about $66? There are some pillows out there that claim to be the one to use…Wonder why I get relief and absolutely no discomfort or pain since I fold my own pillow and keep it away from the cartilldge…waiting on the "original" pillow the doctors office told me to buy. If I don't like it, I'll send it back. Please let me know if you bought the one from England. Thanks.

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A pillow with a hole is a big help, but you don't have to order one. I just bought a contour memory foam pillow and cut about a 6 inch hole in the center. As long as I keep my ears over the hole, I don't have the pain. I've also successfully used a shredded memory foam pillow that was lightly packed enough to kind of make a well in the center. Also, if you can find a way to sleep at a side angle instead of directly on your side – I can do it on the couch or with a body pillow that can't move away from me – it keeps the amount of direct pressure less and I'm less likely to wake up in pain. I would love to find a 'cure", but until then at least I can sleep through the night most of the time.

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My pillow arrived today from London. The instructions said if it's too "hard" to remove some of the insides..they included a slipcover too. This cost $66, and although I haven't slept with it yet, it feels soft. I'm glad you are feeling pretty good, if not way better with the hole in the pillow. I didn't have the pain for a week once I forced my own pillow into a shape that my ear wouldn't touch it. Noticing that worked, I was anxious to purchase the "original". Thank you for writing me.

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good luck celeste. let me know if it works.

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