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.

@ellienewfan

at least i’m not alone in this. no redness, no swelling, etc. Doctors i saw (ear, nose, throat doc.; my own internist; had exrays and MRI) looked at me funny when i tried to explain my situation. thanks @bearylynn,i also have been bunching up a pillow so there is least amount of touching my ear. i seem to be able to somewhat lay on my left side, but my right cannot abide it. in fact if i even lay on right side even without anything touching my ear, i’ll still get it.terrible pain. i am currently 72, and think that perhaps i’ll never get rid of this and must suffer with this for rest of my life.

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Treated with steroids.

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@ellienewfan

at least i’m not alone in this. no redness, no swelling, etc. Doctors i saw (ear, nose, throat doc.; my own internist; had exrays and MRI) looked at me funny when i tried to explain my situation. thanks @bearylynn,i also have been bunching up a pillow so there is least amount of touching my ear. i seem to be able to somewhat lay on my left side, but my right cannot abide it. in fact if i even lay on right side even without anything touching my ear, i’ll still get it.terrible pain. i am currently 72, and think that perhaps i’ll never get rid of this and must suffer with this for rest of my life.

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Motrin does help. If you want diagnosis see an ENT. Possible Relapsing Polychondritis.

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@jennyt

I’ve had this same problem for over 10 years and spent hundreds of dollars on different pillows. I get headaches in the morning because I don’t get enough sleep. I finally found an article that makes sense and I plan to go see my doctor to get tested for “relapsing polychondritis”. I think I have a mild case of this and hopefully my doctor can prescribe something. I am really tired of the sleepless nights and pain

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Why would i treat it with medication when my pillow has worked for 7 years?

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@ellienewfan

at least i’m not alone in this. no redness, no swelling, etc. Doctors i saw (ear, nose, throat doc.; my own internist; had exrays and MRI) looked at me funny when i tried to explain my situation. thanks @bearylynn,i also have been bunching up a pillow so there is least amount of touching my ear. i seem to be able to somewhat lay on my left side, but my right cannot abide it. in fact if i even lay on right side even without anything touching my ear, i’ll still get it.terrible pain. i am currently 72, and think that perhaps i’ll never get rid of this and must suffer with this for rest of my life.

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I have seen all kinds od Doctors in 18 years. Why take medication when i found my cure. Are you a robot, or a doctor pushing medication. I dont get it. I try to let people know fluke accident of a pillow i bought for a different problem.

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@ellienewfan

at least i’m not alone in this. no redness, no swelling, etc. Doctors i saw (ear, nose, throat doc.; my own internist; had exrays and MRI) looked at me funny when i tried to explain my situation. thanks @bearylynn,i also have been bunching up a pillow so there is least amount of touching my ear. i seem to be able to somewhat lay on my left side, but my right cannot abide it. in fact if i even lay on right side even without anything touching my ear, i’ll still get it.terrible pain. i am currently 72, and think that perhaps i’ll never get rid of this and must suffer with this for rest of my life.

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Sorry! Not robot or doc. This is what happened to me and doc said she treats with steroids.

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I’ve had outer ear pain for about 20+ years. I’ve tried bunching the foam chip pillow and rolling up a cloth to place at the front of my ear in order to lie on my side without pain. I’ve had the blood on my pillow in the morning, which my doctor adamantly stated that it couldn’t possibly have come from my ear. I even tried to make my own doughnut pillow that I could place on the side of my head so that my ear wouldn’t touch anything when lying down. It’s so frustrating to never get any answers about these problems. But my experience of getting no answers for the origins of my pain go back more than 40 years. I had unexplained pain in multiple areas of my body since I was about 10 years old. In recent years, because there never seemed to be anything “wrong” with me, my doctor finally diagnosed me with Fibromyalga. I have many pressure points that pain when I lie on them including my hips, neck, shoulders, knees, ears, and the heels of my feet. Not sure if anyone else who have left comments here have other pressure areas but Fibromyalga might be responsible for the ear pain. I also suffer from muscle spasms in my lower legs and feet that usually hit at night, another symptom of Fibro.
However, even with the diagnosis, there is no solution to the pain. I’ve always been a believer that if you get to the root of a problem, you can find a solution, but there just doesn’t seem to be one for this constant aggravating pain.

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I bought this pillow 3 weeks ago from mediflow.com– and the ear pain stopped the first night I slept on it and has not returned. I didn’t put water in it, just use the air filled pillow.

Mediflow Waterbase Travel Pillow × 1 $29.99

Discount (Welcome10Off) $-2.99
Subtotal $27.00
Shipping $10.00
Total $37.00 USD

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@danavs

I bought this pillow 3 weeks ago from mediflow.com– and the ear pain stopped the first night I slept on it and has not returned. I didn’t put water in it, just use the air filled pillow.

Mediflow Waterbase Travel Pillow × 1 $29.99

Discount (Welcome10Off) $-2.99
Subtotal $27.00
Shipping $10.00
Total $37.00 USD

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I wonder if it is the filler of there pillows. I had to stay somewhere unexpected the other night. Did not have my pillow, woke up 3 times in pain. Its crazy!

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I wondered if it is the air or water filler instead of something that moves around as it touches your ear, shoulder, face, etc.

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Doesn’t sound like what’s going on with me. I did have biopsy of cartilage of ear and it showed inflammation.

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@danavs

I wondered if it is the air or water filler instead of something that moves around as it touches your ear, shoulder, face, etc.

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Nope. Had ear tissue biopsied and is showing inflammation in cartilage tissue.

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@jamienolson

Hello, @jennyt and @gls58, Welcome to Mayo Clinic Connect! Thank you for participating in our community. Sharing our personal medical stories and learning from each-other is our goal and looks like we are already off to a great start with the discussions you have both posted.

I would like to call back and introduce members @upartist, @ellienewfan, @bearylynn and @jfortinofish1 to reignite this topic of conversation. When this topic started in 2013 the posts that were made by our members have hopefully gotten some answers and relief. Can you all please give us an update? Have any of you had success with a diagnosis or do you have pain management in place that makes it now bearable to sleep at night?

@jennyt, sorry to hear you are having sleepless nights and pain, I bet that is really frustrating. When do you see your physician? Would you mind coming back and letting us know what they say about your condition? Can you also tell me- Do your ears feel hot and or flare up?

@gls58, so glad to hear you have found some pain relief! That is great news. How long did you suffer in pain before trying the calcium/vitamin D regimen? Was the post that you read stating to try the calcium/vitamin combo in Mayo Clinic Connect? If so, I could try and locate it for you. I would just need to know what group it was in.

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I’ve been experiencing this same condition, it comes and goes and varies in intensity, I brought it up to my family doctor whom said she would look into it but with that look that said she thinks I’m crazy! I found this thread tonight and will try the vitamin D and calcium regiment to see if it really works. I will post back at a later date!

Liked by Jamie Olson

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@jamienolson

Hello, @jennyt and @gls58, Welcome to Mayo Clinic Connect! Thank you for participating in our community. Sharing our personal medical stories and learning from each-other is our goal and looks like we are already off to a great start with the discussions you have both posted.

I would like to call back and introduce members @upartist, @ellienewfan, @bearylynn and @jfortinofish1 to reignite this topic of conversation. When this topic started in 2013 the posts that were made by our members have hopefully gotten some answers and relief. Can you all please give us an update? Have any of you had success with a diagnosis or do you have pain management in place that makes it now bearable to sleep at night?

@jennyt, sorry to hear you are having sleepless nights and pain, I bet that is really frustrating. When do you see your physician? Would you mind coming back and letting us know what they say about your condition? Can you also tell me- Do your ears feel hot and or flare up?

@gls58, so glad to hear you have found some pain relief! That is great news. How long did you suffer in pain before trying the calcium/vitamin D regimen? Was the post that you read stating to try the calcium/vitamin combo in Mayo Clinic Connect? If so, I could try and locate it for you. I would just need to know what group it was in.

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Hello @klumetta. Welcome to Mayo Clinic Connect. There is a lot of good information in this thread about different ideas to tackle the pain.

I will look forward to hearing what helps you. How long have you been experiencing symptoms?

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Hi,

I don't know if someone has already told you this but it sounds like you have TN, trigeminal Neuralgia. I say this because I have it, and last year (2017) I kept getting an outer ear pain on either ear I slept on, but one ear in particular would cause so much pain that I literally was woken up out of a deep sleep and had to remove my self slowly from the pillow and not touch my face for a while. It then would continue into the morning and throughout the entire day that this pain would still be there on the one side. My sensitive areas are around the ear, slightly above it, behind it near the neck, and somewhere in the center radiates all this pain, To be clear it is not an inner ear pain, I have plenty of ear infections to know the difference. So once I noticed the pain radiating down my neck, to the point where I couldn't move my head side to side or look up or down without feeling this pain, I went to see a primary care doctor. I couldn't get a full night of sleep because I tried to sleep on the side that was bearable, but I would end up getting ear soreness on the other ear, and then I would try to sleep on my back (face straight up) but I could still feel the ear pain, and the muscles in my face being pulled toward my pillow also made the ear pain worse. Once I was told it was TN, it all made sense. All the places that were causing me pain have the trigeminal nerve going through it. For me, it comes somewhere behind the ear and goes down my jawline and sometimes my cheeks or forehead if it's really bad. So, do some research on that, and ask your doctor about it (if they are aware of it). Most doctors don't know about this condition unfortunately, so a lot of people get misdiagnosed. I was told it was tmj and an ear infection when I was in my teens.
Hope this helps.
Deidra

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Also, regular over the counter pain meds would not work for this type of pain, so if you've tried advil, Tylenol, motrin, anything of that nature, the pain will still be there. So if you notice nothing is working, that means it's nerve pain (usually tegretol or neurotnin) are prescribed for this type of pain. However, ask any person with TN, they will have their own concoction of pain regimen to help get them thru.

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