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.

@ap6987

This sounds like geniculate neuralgia. You should see a neurologist.

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

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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.

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@grammiejo

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.

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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.

Liked by marystefy

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@grammiejo

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.

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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.

Liked by Jamie Olson

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@grammiejo

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.

Jump to this post

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

REPLY

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.

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@amandacw

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.

Jump to this post

Meloxicam has helped me.

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@grammiejo

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.

Jump to this post

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.

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@amandacw

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.

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Hello @amandacw and welcome to Mayo Connect

You must be encouraged that this blockage was found and that this might be an answer to some of the throbbing you have experienced for so long.

If you care to share more, what type of specialist will you be seeing for this blockage?

Teresa

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@amandacw

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.

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Good luck!

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@grammiejo

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.

Jump to this post

It is Real!

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@ap6987

This sounds like geniculate neuralgia. You should see a neurologist.

Jump to this post

I have been diagnosed with geniculate neuralgia which affects one ear, and I get pain and tingling sensation as well as inflammation on that side of my face up to my eye and even across my forehead. The face sensation never really goes completely away but is tolerable. It is the extreme ear pain that is untolerable at times. Feels like someone lit a match and set my ear on fire.

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@amandacw

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.

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My doctor will be sending me to an ent and I will update here anything new. I have been struggling with this for so long and want to help anyone else who may been going through this. I know I have googled this so many times and found little.

Liked by Jamie Olson

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For the last three years I’ve been experiencing most of the symptoms mentioned above. I have seen multiple doctors/ENTs and they have all been completely unhelpful as I leave them confused after each visit (there is never inflammation inside the ear canal).

I sometimes experience extreme pain after sleeping on my right ear, particularly if the humidity is high or if I am hot/sweating at night. For a while it seemed as if the pain only occurred after sleeping on my ear, however it began to occasionally hurt in the same way after it has experienced any kind of pressure (I work around 4-year-olds and they like to climb on me, often knocking my ear or applying pressure onto the side of my head in one way or another), even after very subtle movements of the ear, such as gently washing behind my ear in the shower or even just rubbing/scratching it.

Just to clarify, a description of the pain and location in detail; it seems to be occuring where the bottom/ back of the ear meets the head/neck, just above the earlobe. In diagrams of the ear there is a small piece of catilage inside the ear frequently labeled “cartilage” (as opposed to the cartilage that makes up the outer ear flap). I believe this is very close to the location of the pain.

It began as a severe and excruciating pain radiating from the aforementioned region after I would sleep on that side of my head. However, lately it will often begin as a subtle pain that is much less intense and more of a dull ache. This aching comes and goes in small waves depending on the position of my head, mouth or neck and can last anywhere from 30 minutes (and goes away if I’m lucky) up to three days.

I am often able to relieve this dull pain by intentionally upsetting the ear by gently moving, pulling or sometimes more effectively by turning my head and opening my mouth and smiling as wide as I possibly can. If I am ‘successful,’ then I will often trigger a far superior wave of pain resulting in a dramatic crescendo of suffering, ultimately followed by relief for anywhere from maybe a day to a month until my next episode. I think of this experience as an ‘anti-orgasm’ in my ear as the pain builds up and ends with about 10 seconds of unbearable torment. It feels as if someone is slowly injecting me with a long, fat needle in the area of the ear previously mentioned. If I have reached this point of pain, it is consistently followed by a subtle sensation of fluid leaking away from the location inside my ear (as funny as it sounds). Unfortunately I am not always successful in triggering this awful pain (ultimately leading to relief), especially if I have recently used this technique.

As mentioned before, I have been unable to identify the source of the pain and doctors have been of absolutely zero help. In fact, they frequently grow impatient with me and I am unable to mention even a fraction of what I have written. I would greatly appreciate any comments, especially from anyone who has experienced the same. I hope everyone finds success in dealing with these issues.

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Wow! I had no idea so many have this problem. My pain is not nearly as extreme as some I’ve read in these posts. But I have enough that it moved me to investigate which brought me here. Now I’m concerned that it’s going to get worse. I’ve sufferrd for a couple years. Left side only at first. Now right side started up. I’ve not gone to the doctor. I can see from these posts I’m not going to bother. The reason I’m commenting is because I did find a temporary solution I feel worth mentioning. I bought the “My Pillow” we all have seen advertised on tv and radio. I did not buy it necessarily thinking it would help my ear problem, just wanted a comfortable pillow. First night, left side no pain! So surprised!!!! So happy!! I was surprised as it didn’t occur to me a pillow would be the solution. For two years no ear pain. A couple weeks ago it started up again! Right side too. I’m thinking of getting a new “my pillow “ or the one I saw referred to in recent posts. Just wanted to add my 2 cents if it should be a help to anyone.

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