Extreme outer ear pain: What can it be?

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.

Interested in more discussions like this? Go to the Ear, Nose & Throat (ENT) Support Group.

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

REPLY

I started having this pain some time ago. Tried everything I could think of, and mentioned it to every doc I saw, with no answers. In my research online, someone mentioned calcium and vitamin D. I figured it couldn't make things worse and it was an inexpensive test. About 2 weeks after starting calcium 500 mg and D3 1000 iu every morning, the pain is gone! I haven't woken with ear pain one time after the initial waiting period. I can't tell you how much relief this has given me. I'm not exhausted every hour of every day anymore. I certainly won't guarantee it will work for you, but oh, boy, try it if there isn't a reason not to. It's like a miracle. Really. I wish I could find the entry that mentioned this fix so I could thank the person who wrote it, but alas, I've looked so much, I just can't relocate it. Thank you, whoever you are, from the bottom of my heart!

REPLY

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.

REPLY
@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.

Jump to this post

I had the pain for over 2 years, and I resorted to sleeping with my hand under my cheek to keep pressure off my ears. It only helped a little and caused me to wake over and over every night. I come back and do a search every so often to see if there are any stories of relief, and I just can't remember where I saw the vitamin / calcium solution. I'll keep looking, because it's made such a difference in my life. I'd forgotten how it felt to actually sleep. I suffer from chronic neck and back pain too, and sleeping on my side is the only option I have, so this was a huge issue. This may not help all others suffering with this, but it's so easy to try. Give it a little time. Hope it helps.

REPLY
@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.

Jump to this post

Found it! .steadyhealth /topics/severe-ear-pain-caused-when-i-lay-down-at-night?page=3 - won't let me post the link, so if you search for Severe Ear Pain Caused When I Lay Down At Night, it should lead you to the post. I love this person!

REPLY
@gls58

I started having this pain some time ago. Tried everything I could think of, and mentioned it to every doc I saw, with no answers. In my research online, someone mentioned calcium and vitamin D. I figured it couldn't make things worse and it was an inexpensive test. About 2 weeks after starting calcium 500 mg and D3 1000 iu every morning, the pain is gone! I haven't woken with ear pain one time after the initial waiting period. I can't tell you how much relief this has given me. I'm not exhausted every hour of every day anymore. I certainly won't guarantee it will work for you, but oh, boy, try it if there isn't a reason not to. It's like a miracle. Really. I wish I could find the entry that mentioned this fix so I could thank the person who wrote it, but alas, I've looked so much, I just can't relocate it. Thank you, whoever you are, from the bottom of my heart!

Jump to this post

thx for info on vitamin d and calcium.  i will definitely try and give everyone updateliz

REPLY
@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.

Jump to this post

I have extreme pain too. I keep roll on biofreeze by the bed and roll it onto my ears. It burns and provides relief and I can usually fall asleep again. I have this issue every night. It's just too much pressure on the vascular tissue of our ears 🙁

REPLY
@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

Jump to this post

Put biofreeze on your ears. I have to do that and it helps. Or icy hot

REPLY
@gls58

I started having this pain some time ago. Tried everything I could think of, and mentioned it to every doc I saw, with no answers. In my research online, someone mentioned calcium and vitamin D. I figured it couldn't make things worse and it was an inexpensive test. About 2 weeks after starting calcium 500 mg and D3 1000 iu every morning, the pain is gone! I haven't woken with ear pain one time after the initial waiting period. I can't tell you how much relief this has given me. I'm not exhausted every hour of every day anymore. I certainly won't guarantee it will work for you, but oh, boy, try it if there isn't a reason not to. It's like a miracle. Really. I wish I could find the entry that mentioned this fix so I could thank the person who wrote it, but alas, I've looked so much, I just can't relocate it. Thank you, whoever you are, from the bottom of my heart!

Jump to this post

Still working? Just one of each tablet each morning?

REPLY
@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

Jump to this post

Hi @salty and @jennyt,

Welcome to Connect. It must be so frustrating to not get adequate sleep, and waking up with pain due to unknown cause!

In my research on the internet, I came across a condition known as Chondrodermatitis Nodular Helices, which is basically a small, painful, inflammatory nodule or growth attached to the cartilage of the outer ear; you can read more about it, here, http://bit.ly/2pvBj47.
The study suggests that pressure damage, mainly from the weight of the head during sleep, is the most important cause, but it could also be due to pressure from hearing aids or or frostbite or trauma to the ear.

Similar to the above condition is, as @jennyt mentioned, relapsing polychondritis.
"Relapsing polychondritis (RP) is a rare condition characterized by recurrent inflammation of cartilage...Ear involvement is the most common feature, but a variety of other areas of the body may be affected..." http://bit.ly/2pvbvF7
Connect member @marilly mentioned this condition in an older discussion, and I'm hoping she might return with more insight.

@salty, @jennyt do you take any medication for the pain? As @upartist mentioned, have you tried elevating the pillow, or perhaps using a 'donut cushion' when you sleep?

REPLY
Please sign in or register to post a reply.