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.

Nibor63 | @nibor63 | Aug 16, 2018

In reply to @ap6987 "This sounds like geniculate neuralgia. You should see a neurologist." + (show)

Looked it up. NOT. Pain is in cartilage and burns, swells with pressure.

grammiejo | @grammiejo | Aug 19, 2018

I came across this forum after another sleepless night. I have been suffering with this for about two years. Mainly right ear. I sleep on my right side. But when I’m trying to sleep on left it will happen on that side as well. Much more painful on right. It was happening about once a month. Now weekly and more often than that. Last night was horrible and for the first time was in my jaw some. It is now 5:00pm and still have some pain. It brought me back to google to search once again for answers. In the past few years I have gone from an extremely healthy and active person to one that suffers daily from many issues. A year ago I was diagnosed with Autonomic Nervous System Disorders, Dysautonomia. Within that is POTS. Is anyone else in this category? I’m wondering if it could be part of this. I’ll see my neurologist in November and will be sure to ask about it. I haven’t yet because I’m tired of my body failing me once again. Happy I found this. Once again I am not crazy. This is a real thing.

gls58 | @gls58 | Aug 19, 2018

In reply to @grammiejo "I came across this forum after another sleepless night. I have been suffering with this for..." + (show)

I feel you – so aggravating to yet another crazy thing the docs can't tell you what is and you sound crazy when you try and tell them about it. Tried so many things – different vitamins and minerals, went for a sleep study in case it was that. I did need a CPAP, but it didn't help with the ear pain unfortunately. I bought one of the little foam travel pillows with a hole for the ear, and it seemed to help, but was too small and I kept having to re-position it through the night to keep my ear over the hole. I got the bright idea to get a memory foam pillow and cut out a section to accommodate the small pillow inside it. Well, that didn't really work. I took out the small pillow, and then just for kicks, I put a soft cotton pillowcase over the big pillow which now had a BIG hole in it and tried that. It works better than anything I've tried. I still don't get as much rest as I'd like because I can only sleep on my sides, but it is better.

Nibor63 | @nibor63 | Aug 19, 2018

In reply to @grammiejo "I came across this forum after another sleepless night. I have been suffering with this for..." + (show)

Was bedridden about a year and a half ago, suffering from severe ear cartilage pain, severe foot pain, severe back pain – all with pressure. And severe diahrea. Had severe night sweats, fluctuating body temps, high heart rates, and high blood pressure. Several doctor's told me I was crazy. One doctor wrote me a script for Meloxicam. Solved most of my issues. Meloxicam, the wonder drug. Ear pain is all gone as long as I take my medicine.

Nibor63 | @nibor63 | Aug 19, 2018

In reply to @grammiejo "I came across this forum after another sleepless night. I have been suffering with this for..." + (show)

Ask your doctor to try you on Meloxicam. It works for me. Get a great night's sleep since using this.

amandacw | @amandacw | Aug 19, 2018

I am experiencing the same thing as you but mine is only on my left side. It started many years ago, when it first started I would be sleeping on my left side and roll over and get this extreme throbbing on my ear it was not inside it felt like the cartilage. I thought maybe I was just sleeping on my left side for too long the same way your arm or leg might fall asleep. It started to get more and more frequent and shorter periods of time. I would occasionally bring it up to the doctor and they I would say it's nothing. Eventually it got to the point I can't sleep on my left side at all even though that's the side I want to sleep on. So I started to go to the doctor specifically for it. They would always look inside my ear and say nothing is wrong, I even went to two specialist and they did the exact same thing. I went to a few different doctors hoping one would help me but most made me feel crazy. I did buy a pillow that helps a lot. It is a buckwheat Hull pillow and I can dig a hole with the hulls around my ear. But the pain is still there. I have started to feel dizzy and I've heard that ear issues can cause dizziness so I brought it up to a doctor. They didn't think it was related to my ear. They sent me for blood work, to therapists and finally for a CT scan for my brain. But in the CT scan my brain was fine and they mentioned that in my left ear the airway is completely blocked whereas on my right side it is not. It is in a place that they can't just look at. So now I'm being sent to another specialist to find out what the blockage is. I will update this when I get more information. I hope this helps someone because I have been looking into this for a very long time hoping someone has the same issues as I do.

Nibor63 | @nibor63 | Aug 19, 2018

In reply to @amandacw "I am experiencing the same thing as you but mine is only on my left side...." + (show)

Meloxicam has helped me.

grammiejo | @grammiejo | Aug 20, 2018

In reply to @grammiejo "I came across this forum after another sleepless night. I have been suffering with this for..." + (show)

I’m trying to remember if I was ever put on Meloxicam? I have been giving so many drugs over the passed 4 years. It sounds familiar. Last night was 3rd night in a row. Hoping I can get a break. Not sure why it amped up so much. It feels like my cartilage is hard when I’m lying on it. It hurts to touch. Usually it goes away during day, not the last few. Not as bad as night but still painful. I know i’m In a flare with my condition. My BP has been very low, I fainted about 5 days ago. Pain returned after that. One of the reason I was wondering if anyone has been diagnosed with a Dysautonomia. I receive immunoglobulin infusions 2 x a month. Hoping to jump start my immune system. Thanks everyone. I was happy a year ago when I was diagnosed because I was beginning to think I really was crazy. Now finding this forum I know one again it’s a real thing.