1. < Ear, Nose & Throat (ENT)

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.

franjan | @franjan | Jun 2, 2017
In reply to @jennyt "I've had this same problem for over 10 years and spent hundreds of dollars on different..." + (show)
@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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@hopeful thank you for your reply. I am having a bit of trouble understanding the order of the posts. They seem to be rather mixed in the dates and times they are written. What do I need to do to correctly read the posts in order? Thanks for any help with this.
I see that many here are finding some relief with putting icy-hot etc. on before going to sleep. If there is any leasion at all on the ear, wouldn't that cause a lot of burning? I imagine most of us would be willing to try most everything. :-).

REPLY
Nibor63 | @nibor63 | Jun 3, 2017
In reply to @jennyt "I've had this same problem for over 10 years and spent hundreds of dollars on different..." + (show)
@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

This is what I know that happened with me. Mine started about six months ago, but I also have something undiagnosed going on in my body. Only happens when I go to sleep at night. I am a side sleeper. When I go to sleep my burning, red, swollen, painful ear wakes me up. Happens in both ears. Doctor told me it's inflammatory. Said take 600 my. Motrin before bed. Worked. But, had to take every night. Not necessarily good for you over long period. So, I didn't take it every night and suffered with waking up in pain during night. Then I had a colonoscopy and when I cleaned out my colon, the pain went away completely. Only lasted for two weeks, though. After that, I went back to the Motrin, and no longer worked. Don't know what all this means. Will let you know, when I know more. Scheduling biopsy of my ear. Talked to doctors about it. Most said it can't be so that colon has anything to do with ear. Rest told me "it's in my miñd". Basically that I'm crazy.

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 3, 2017
In reply to @jennyt "I've had this same problem for over 10 years and spent hundreds of dollars on different..." + (show)
@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

@nibor63 I'm really sorry to hear of this problem you are having. If you are comfortable sharing more information, it might be helpful to know what types of doctors you have seen for this problem. Since you have been told that this is an inflammatory problem have you seen a doctor who specializes in inflammatory disorders? Do you have other inflammatory disorders? Here is a website that offers some information about inflammatory disorders https://www.niams.nih.gov/health_info/Autoinflammatory/. It will be interesting to see what the biopsy of the ear reveals. Please keep in touch with Mayo Connect. We are here to offer you support and encouragement along your journey. Teresa

REPLY
Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Jun 3, 2017
In reply to @jennyt "I've had this same problem for over 10 years and spent hundreds of dollars on different..." + (show)
@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

Hello @franjan, in regards to your issues with having trouble figuring out the order of posts, are you replying primarily by email? If so, I suggest clicking the VIEW & REPLY button at the bottom of your email notification and it will take you to the full discussion. From there, you should be able to scroll up and down to get a better feel for where you are in the conversation.

As far as the dates & times go, they can seem to be a bit out of order since when you are on the website you have the ability to reply to any post, which means you can reply to one of the first posts from an older date or at the bottom which would be the newer dates. It can be a bit confusing, but that is the best way to try and understand it. I hope this helps, do you have any other questions I could help with?

REPLY
franjan | @franjan | Jun 3, 2017
In reply to @jennyt "I've had this same problem for over 10 years and spent hundreds of dollars on different..." + (show)
@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

Thank you @justin for your reply. Yes, it is confusing, as the post right under yours that says 16 mins ago, is a post that has a date Mar 31. Oh, well, I'll just try and not understand it and just know that the order of post are confusing. 🙂

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 5, 2017

Hi @franjan, @hopeful33250 and everyone reading this post.
The messages are listed in chronological order, meaning from oldest to newest message. However, members can post a reply to a message, which will make the messages appear out of order. Let me illustrate. Let's say that a new message is posted everyday. The order of posts would appear like this:

May 1
May 2
May 3
May 4
May 5

If I want to respond on May 6 to the message that was posted on May 2, the discussion dates would now look like this:
May 1
May 2
-- May 6
May 3
May 4
May 5

As the discussion grows, you could have something that potentially looks like this

May 1
May 2
-- May 6
-- May 7
-- May 8
May 3
May 4
-- June 2
-- June 12
May 5
June 18
June 19

I hope this helps clarify.

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rosesareredmylove2016 | @rosesareredmylove2016 | Jun 8, 2017
In reply to @bearylynn "I've had same symptoms for 20 years. When I sleep on my side, I bunch edge..." + (show)
@bearylynn

I've had same symptoms for 20 years.

When I sleep on my side, I bunch edge of memory foam (lightweight) pillow under my neck so force of ear on pillow is minimal.

Also - when really acting up - small amount of terazol cream (yes, it's a 'vaginal' yeast cream -- and I've also used it for yeast in my dog's ear) on a q-tip swabbed around the ear canal.

In 2007, I had ear tubes placed (not related to this). My left ear, which is the one with the soreness problem, became VERY painful and would bleed when I slept on my left side. After deciding drum was infected at the tube, it was removed. Surgeon was surprised at how infected it was -- even needed to patch the drum. I think that's when I decided to try to treat for yeast.

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Well, I'm glad to know I'm not being crazy when I go too myENT with this issue, I've had outer ear pain about every 2 or 3 months, comes and goes. Seems it gets worse for me when I lay on it. Ive been to my ENT, and lat time it was MRSA....Yea.....But now the say thats gone, and the pain I feel could just be from my Brain surgery 3 years ago....Cartlidge healing????? It still hurts some days and my ENTgave me creme for my ears to stop the itching...Helps some, doesn't stop the pain at the base of my ear...

REPLY
Nibor63 | @nibor63 | Jun 9, 2017
In reply to @jennyt "I've had this same problem for over 10 years and spent hundreds of dollars on different..." + (show)
@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

I have seen ENT, Rhuematologist, Neurologist, Orthopedist, Oncologist, had all annual exams, Gastroenterologist, and more. Most told me I'm Crazy. That was including two PCP's. Trying to find new PCP. I have foot pain, low back pain, and now some blurred vision in right eye. Just saw Optometrist. Saw spot on Retina in right eye. Going to see specialist next week. Scared. Had blood work to test for inflammation, came back negative. White blood cell count is up, but not over normal range. Doctors not concerned.

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 10, 2017
In reply to @jennyt "I've had this same problem for over 10 years and spent hundreds of dollars on different..." + (show)
@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

@nibor63 Hello - It sounds as if you have seen a lot of doctors and had a lot of tests. I can understand your frustration at not having a diagnosis and therefore not getting a treatment plan. I see that you were going to schedule a biopsy of the ear. If that has been done, do you have any results from that yet? I understand that doctors can seem quite unconcerned when the diagnosis is not obvious to them, but I would encourage you to keep trying to find a doctor who can offer you some new suggestions. If you live near a large medical center or medical school they are often able to offer some expertise that smaller hospital systems don't have. Do you live near one of the Mayo facilities (Minnesota, Florida or Arizona)? Best wishes as you continue this journey to find a diagnosis and a treatment for your problems. Teresa

REPLY
Nibor63 | @nibor63 | Jun 30, 2017
In reply to @jamienolson "Hello, @jennyt and @gls58, Welcome to Mayo Clinic Connect! Thank you for participating in our community...." + (show)
@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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Just had biopsy of my ear for this same thing. Found increased white blood cells in tissue. Found swollen lymph nodes in neck just under ears. Going for ultrasound, biopsy of nodes. Doc says not related but I think it is.

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