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 have also awaken because of excruciating pain around my outer ear. I read in a magazine where someone had written about having excruciating pain around the ear lobe whenever she slept on her ear. This interested me, as I had the same problem. She was advised by the doctor answering the post. He stated that the condition is known as trigeminal neuralgia. I intend to look up information on this condition and maybe oneday I will be able to get a good night sleep instead of sleeping on my hands.

Liked by lioness

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@angeloneday

I have also awaken because of excruciating pain around my outer ear. I read in a magazine where someone had written about having excruciating pain around the ear lobe whenever she slept on her ear. This interested me, as I had the same problem. She was advised by the doctor answering the post. He stated that the condition is known as trigeminal neuralgia. I intend to look up information on this condition and maybe oneday I will be able to get a good night sleep instead of sleeping on my hands.

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Not Trigeminal Neuralgia.

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I have had this same problem for many years. It is not relapsing polychondritis. It is not an autoimmune inner ear disease. The pain is triggered when I lie down on my side, with my ear touching a very soft pillow. Pillow softness does not prevent the outer ear cartilage pain. I know many people who can lie with their head against a pillow and sleep without pain. I used to be one of them. Many of us 'oddballs', exist and suffer from this"mystery diagnosis". I keep waiting for our superhero to appear and remove this pain forever.

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@marlaj

I have had this same problem for many years. It is not relapsing polychondritis. It is not an autoimmune inner ear disease. The pain is triggered when I lie down on my side, with my ear touching a very soft pillow. Pillow softness does not prevent the outer ear cartilage pain. I know many people who can lie with their head against a pillow and sleep without pain. I used to be one of them. Many of us 'oddballs', exist and suffer from this"mystery diagnosis". I keep waiting for our superhero to appear and remove this pain forever.

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I have this same thing. No diagnosis. Have been researching this for almost two years. Had every test known to man. Even had an ear biopsy. I believe mine may be autoimmune related, as I have other symptoms, as well. Ear biopsy showed inflammation in ear tissue. I do take Meloxicam and this helps to minimalize all symptoms.

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I have same prolem . I fillpain 2 times in a week. I met many phisysian non of them had any idea.

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This is going to sound crazy, but I experienced the same kind of pain you are talking about, hurt so bad one could not even touch the other edge of my ear. After a few different doctors, a younger internal med Dr, said it was inflammation of the main artery in my neck, on the side effected. Put me on fairly strong antibiotics and it went away. If your still dealing with it, might not hurt to ask!

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@livetheday

This is going to sound crazy, but I experienced the same kind of pain you are talking about, hurt so bad one could not even touch the other edge of my ear. After a few different doctors, a younger internal med Dr, said it was inflammation of the main artery in my neck, on the side effected. Put me on fairly strong antibiotics and it went away. If your still dealing with it, might not hurt to ask!

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Hello @livetheday

I really appreciate your post about outer ear pain and the relief you found from antibiotic treatment. We have many members in this discussion group who have not found help for their pain and your post is very encouraging.

I would be interested in knowing how your doctor diagnosed the " inflammation of the main artery in my neck." Was this problem revealed by an MRI or some other type of test?

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I have this a couple times a year. Also was told ears were fine. So I take ear drops and that heals it. I think I have also taken antibiotics. This has been happening for several years. If you read my posts, I have a complicated medical history.

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@hopeful33250

Hello @livetheday

I really appreciate your post about outer ear pain and the relief you found from antibiotic treatment. We have many members in this discussion group who have not found help for their pain and your post is very encouraging.

I would be interested in knowing how your doctor diagnosed the " inflammation of the main artery in my neck." Was this problem revealed by an MRI or some other type of test?

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I would also like to know. I have not been diagnosed and have the same issue. Doc did a biopsy of my ear tissue and found inflammation there. No diagnosis though.

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@hopeful33250

Hello @livetheday

I really appreciate your post about outer ear pain and the relief you found from antibiotic treatment. We have many members in this discussion group who have not found help for their pain and your post is very encouraging.

I would be interested in knowing how your doctor diagnosed the " inflammation of the main artery in my neck." Was this problem revealed by an MRI or some other type of test?

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There may be something to this. I have NOT been diagnosed. However, I have systemic inflammation. Started with my ears. Have periodic vision loss due to pressure when lying down
Feet hurt when standing due to pressure on them. Same with my back. Numbness in arms with pressure on my neck. Read an article, a while back, after trying to research my condition. Guy had the same burning ears as mine. Doc diagnosed him with Relapsing Polychondritis. Misdiagnosis. Turns out he had Lymphoma.

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@anniemaggie

I have this a couple times a year. Also was told ears were fine. So I take ear drops and that heals it. I think I have also taken antibiotics. This has been happening for several years. If you read my posts, I have a complicated medical history.

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Hi Anniemaggie……I have been part of this group for quite sometime. Are the ear drops that you use a prescription? Periodically I look for ear drops at the store, but never find any. I have tried a few suggestions that seem to work for some of you, but nothing is working for me. I did get a diagnosis of Chondrodermatitis (CNH) caused from laying on my right side too much, and I do get a pressure sore on my ear. When the sore gets really intolerable, I resort to my very uncomfortable pillow with a hole in the middle. The Sore heals in a few weeks, then I can’t resist sleeping on my very soft reg. pillow to get some more restful sleep. After several weeks, I get the sore again. For other reasons I can only sleep on my right side…..so this is a vicious painful circle. I am 80 years old now, so I know I won’t have many more years to tolerate this problem. Sorry this is a long post.

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@nibor63

There may be something to this. I have NOT been diagnosed. However, I have systemic inflammation. Started with my ears. Have periodic vision loss due to pressure when lying down
Feet hurt when standing due to pressure on them. Same with my back. Numbness in arms with pressure on my neck. Read an article, a while back, after trying to research my condition. Guy had the same burning ears as mine. Doc diagnosed him with Relapsing Polychondritis. Misdiagnosis. Turns out he had Lymphoma.

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My tinnitus is with me all the time but recently I am dizzy when I lay down and have noticed when I get out of bed my vision is foggy then clears up Anyone have something like this? The foggy vision scares me.

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I am almost 71. I turned 40, and my medical nightmares started. They are prescription. Don't know the name. I am in rehab, broke my ankle. Was told break a 3rd tike never walk again. Have ms fallen way too many times. Anyways no pressure sores on ears. I have in past gotten sore ears from always laying on right side. Now sleep on my back. Sometimes right side. But the weird pain ones are different. Hurt bad. No one knows why, story of my life. So many medical issues. Sorry can't help you more. Try and find something extremely soft to put under ear. Like at a fabric store, they have extremely soft fluffy fabrics, fold up. Like fabric feathers. Something for your head to lay on instead of the bed. I also get a lot of noises in my ear minus the vertigo. I think I should give my body to science.

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@anniemaggie

I am almost 71. I turned 40, and my medical nightmares started. They are prescription. Don't know the name. I am in rehab, broke my ankle. Was told break a 3rd tike never walk again. Have ms fallen way too many times. Anyways no pressure sores on ears. I have in past gotten sore ears from always laying on right side. Now sleep on my back. Sometimes right side. But the weird pain ones are different. Hurt bad. No one knows why, story of my life. So many medical issues. Sorry can't help you more. Try and find something extremely soft to put under ear. Like at a fabric store, they have extremely soft fluffy fabrics, fold up. Like fabric feathers. Something for your head to lay on instead of the bed. I also get a lot of noises in my ear minus the vertigo. I think I should give my body to science.

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@anniemaggie I do sleep on the bed no pillow I found a pillow made my nerves down arms and hands hurt so don't use a pillow it's the vision that bothers me You take care Bless you

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@livetheday

This is going to sound crazy, but I experienced the same kind of pain you are talking about, hurt so bad one could not even touch the other edge of my ear. After a few different doctors, a younger internal med Dr, said it was inflammation of the main artery in my neck, on the side effected. Put me on fairly strong antibiotics and it went away. If your still dealing with it, might not hurt to ask!

Jump to this post

@happyat76 @lioness @anniemaggie @nibor63 @franjan @angeloneday @poetny

Hi everyone! It is nice to see that I am not crazy and a group of us exist who understand each other's miserable ear pain.
We seem to have some variances associated with the pain as well as some similarities. I wonder how many of us share any of the following:

*Severe pain affecting both ears, mainly when lying on one's side with the head and ear resting against the pillow (My ears cannot touch anything during sleep, including a pillow.)
*Autoimmune disease
*Above average stress level
*Small fiber neuropathy
*Raynaud's
*Definitely over age 29, 39 or higher! 😉

In regards to the foggy vision and vertigo, see your primary physician as well as an ophthalmologist and ENT, respectively.

Note regarding relapsing polychondritis but the specialist that I saw for this said that with that condition, there will be gradual deformity of the ear; generally the ear enlarged and the top of the ear will droop. I do not have the physical characteristics.

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