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.

lsjay | @lsjay | Oct 14, 2020
In reply to @poco "Mezzsmrs, please try massaging a facial cream on and behind your ears (not in the eardrum,..." + (show)
@poco

Mezzsmrs, please try massaging a facial cream on and behind your ears (not in the eardrum, of course!) It works for me - I put it on twice daily, and especially before going to bed. And when the excruciating pain does occur, I immediately massage with the cream - Please let me know if this works for you.

Jump to this post

I hope this works for some. Touching my own ears can be painful. Though I sometimes resort to using Diclofenac topical pain cream. It can sometimes help for a short time.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 14, 2020
In reply to @lsjay "I have suffered from the same problem for more than 30 years. It started out very..." + (show)
@lsjay

I have suffered from the same problem for more than 30 years. It started out very similar to what you describe and for many years I put it down to TMJ. Even though the bite guard I wore nightly did nothing to improve the pain. I'd done loads of research as to what the cause might be. The closest I've come (and no doctor has ever even looked into my pain) to any sort of self-diagnosis is something related to the Trigeminal Nerve. Trigeminal Neuralgia (Tic Douloureux). You can find out more under NORD's website. (Sorry, I'm new and cannot post a direct link.)

My pain doesn't quite fit either TN1 or TN2 classification, but I do have MS, which I assume is the cause.I would suffer daily pain of a level 7 to 10 for days on end. Holding a phone to my ear hurt, laying on my side was (and still is) near impossible. Even if my ear didn't actually touch the pillow, my ear would hurt.

The only thing that offered relief was when I started taking Lyrica for other nerve pain. I am now on 2400 mg Gabapentin daily and that just keeps the constant pain at under a 3. Lyrica worked much better and I needed less medication, but the co-pay was too high and I had to change. My quality of life has been much improved by the pain meds, though by no means am I pain free.

I do hope some of you who posted about this same problem have at least gotten relief from the pain, if not a diagnosis.

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@lsjay, I noticed that you wished to post a URL to a web resource with your message. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post are not spam, so allow me to post it here.
- NORD info on Trigeminal Neuralgia https://rarediseases.org/rare-diseases/trigeminal-neuralgia/

@lsjay, you also mention having multiple sclerosis. You may be interested in joining this discussion group on Connect:
- Multiple Sclerosis (MS) - please introduce yourself https://connect.mayoclinic.org/discussion/multiple-sclerosis-ms-please-introduce-yourself/

Have you and doctor investigated the possible diagnosis of trigeminal neuralgia?

REPLY
Erika | @erikas | Oct 14, 2020
In reply to @lsjay "I have suffered from the same problem for more than 30 years. It started out very..." + (show)
@lsjay

I have suffered from the same problem for more than 30 years. It started out very similar to what you describe and for many years I put it down to TMJ. Even though the bite guard I wore nightly did nothing to improve the pain. I'd done loads of research as to what the cause might be. The closest I've come (and no doctor has ever even looked into my pain) to any sort of self-diagnosis is something related to the Trigeminal Nerve. Trigeminal Neuralgia (Tic Douloureux). You can find out more under NORD's website. (Sorry, I'm new and cannot post a direct link.)

My pain doesn't quite fit either TN1 or TN2 classification, but I do have MS, which I assume is the cause.I would suffer daily pain of a level 7 to 10 for days on end. Holding a phone to my ear hurt, laying on my side was (and still is) near impossible. Even if my ear didn't actually touch the pillow, my ear would hurt.

The only thing that offered relief was when I started taking Lyrica for other nerve pain. I am now on 2400 mg Gabapentin daily and that just keeps the constant pain at under a 3. Lyrica worked much better and I needed less medication, but the co-pay was too high and I had to change. My quality of life has been much improved by the pain meds, though by no means am I pain free.

I do hope some of you who posted about this same problem have at least gotten relief from the pain, if not a diagnosis.

Jump to this post

@lsjay Welcome to Mayo Clinic Connect. Due to the nature of your post, I'm wondering if you would benefit from joining the chronic pain group, along with the ENT group.

Chronic Pain Group

https://connect.mayoclinic.org/group/pain/

You said that, "no doctor has ever even looked into my pain." Can you tell me more about that?

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maryb113 | @maryb113 | Dec 13, 2020
In reply to @womanslife "Hi all, jumping on as I'm really struggling. 34 year old female! Get severe pain in..." + (show)
@womanslife

Hi all, jumping on as I'm really struggling. 34 year old female! Get severe pain in left ear only when laying down. Wakes me from my sleep and when I move my ear from the pillow the pain increases. This can last up to a few minutes and I can't even touch it. I have to wait until it calms down. Has been going on for over a year now, use to happen every now and again but recently it's happening every night. Currently 30 weeks pregnant so not sure if that's a reason for it happening more regularly. Not getting a lot of sleep as it is with right hip pain but the ear pain on top is really getting me down. One doctor said (via telephone) sounds like eustation dysfunction but waiting list is very long and they won't do anything as I'm pregnant so what do I do? I googled this and I'm not sure the symptoms match what I have so not sure. Please help. Thanks

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Hi there! I’m really intrigued by your post because it sounds very similar to what I went through. I’m 33, and I have identical pain to you, and I was around 30 weeks pregnant when mine started (it’s always only been in one ear). Except when mine started I also felt a bump form within the little pocket of my ear (not quite in and not quite out of the ear).

It’s been 2.5 years since it happened. Still have the bump and I’ll get the pain upon waking once every 1-2 months or so. It also feels like there’s water inside my ear when I workout sometimes. It’s usually when doing little jumps, like jumping jacks. I know it’s not sweat because it starts before the rest of my body starts sweating. I’ve seen 2 different ENTs now and neither have been able to figure it out.

Any insight you received from your doctor would be SO helpful! Also, wondering if you’re still dealing with this?? Thanks!!

REPLY
1 reply
Erika | @erikas | Dec 15, 2020

@maryb113 Welcome to Mayo Clinic Connect, a place to give and get support. You are looking to connect with members like you. You have seen two providers and your symptoms cannot be explained.

May I ask how bad the pain is when this happens? Have you considered keeping a journal to detect any possible patterns?

REPLY
racnie4 | @racnie4 | Jan 5, 2021
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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I know it’s been a while since you posted this… But what happened when you went to the doctor? Did you have relapsing polychondritis?

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1 reply
racnie4 | @racnie4 | Jan 5, 2021
In reply to @maryb113 "Hi there! I’m really intrigued by your post because it sounds very similar to what I..." + (show)
@maryb113

Hi there! I’m really intrigued by your post because it sounds very similar to what I went through. I’m 33, and I have identical pain to you, and I was around 30 weeks pregnant when mine started (it’s always only been in one ear). Except when mine started I also felt a bump form within the little pocket of my ear (not quite in and not quite out of the ear).

It’s been 2.5 years since it happened. Still have the bump and I’ll get the pain upon waking once every 1-2 months or so. It also feels like there’s water inside my ear when I workout sometimes. It’s usually when doing little jumps, like jumping jacks. I know it’s not sweat because it starts before the rest of my body starts sweating. I’ve seen 2 different ENTs now and neither have been able to figure it out.

Any insight you received from your doctor would be SO helpful! Also, wondering if you’re still dealing with this?? Thanks!!

Jump to this post

Have you looked into chondritis?

REPLY
1 reply
Nibor63 | @nibor63 | Jan 5, 2021

Don't know if you are still following this or not, but if you are, that sounds exactly like what I have. Haven't found a doctor that can help or who knows what it is. Was told NOT Relapsing Polychondritis. I still periodically have the pain, but take Meloxicam to alleviate the symptoms. I havege other medical issues, as well, that have recently started. I believe that I have Addison's Disease which is an Autoimmune Disease and I believe that everything is related to that. Palms of my hands are swollen to where I have a difficult time closing them and I have Trigger Finger in 3 fingers. Doctor doesn't know what is causing that either. Back to my ears, had biopsy on my ear cartilage, which showed increased white blood cells, but doctor couldn't tell me why. So, I just continue to live with this everyday.

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Nibor63 | @nibor63 | Jan 6, 2021
In reply to @racnie4 "Have you looked into chondritis?" + (show)
@racnie4

Have you looked into chondritis?

Jump to this post

Have not. Is this different than polychondritis?

REPLY
Erika | @erikas | Jan 11, 2021
In reply to @racnie4 "I know it’s been a while since you posted this… But what happened when you went..." + (show)
@racnie4

I know it’s been a while since you posted this… But what happened when you went to the doctor? Did you have relapsing polychondritis?

Jump to this post

@racnie4 Welcome back to Mayo Clinic Connect, a place to give and get support. You are wondering if @jennyt was diagnosed with relapsing polychondritis by her provider. You are also wondering if the member has looked into chondritis.

Below I have linked discussions related to relapsing polychondritis and Costochondritis. You may want to scroll through the past comments.
- Relapsing Polychondritis https://connect.mayoclinic.org/discussion/relapsing-polychondritis/
- Costochondritis https://connect.mayoclinic.org/discussion/costochondritis/

May I ask if you experience out ear pain and if you have received a diagnosis?

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