Help - my ear is killing me

General General TN & GPN (Old Site)
1

Hi all - I'm new here, and not entirely sure what's going on or if I have TN.

For the past 4 months, my ear intermittently aches with pain that feels like a raw nerve, emanating from my ear canal through my head and around the front jaw area and behind my ear. It's sensitive to the lightest touch. It will go away completely at times, then come back without provocation.

I went to the ENT yesterday. As my PCP said, I have no ear infection - everything's fine there. The ENT went up my nose with a camera to check my E-tubes and in so doing, discovered a couple polyps. Now I'm scheduled to get at CT scan and ultrasound to see if I have them in my sinuses; she said that she's screening me for cancer. *yikes*

I asked her about TN and she said if all this comes back clear, then TN is a probability and would refer me to a neurolgist.


I get migraines - have for my life - and take topomax, which I thought I read is supposed to help with TN since it's a seizure med.

I need some advice or encouragement. Can TN be felt primarily in the ear and NOT the face? What's going on with me?

2

Well they have to do all these tests to rule out all other things.... You can do some reading in the face pain info tab and it will give you more information about the specific symptoms of TN and ATN.

Peace, Min

3

Yes, I realize that. Thank you. I have done research, just looking to find others who may have similar experiences or insight to share.

4

It might be Glossopharygeal. My mom has it. It might be one thing to check into.

5

Okay, I was misdiagnosed with TMJ because of pain you describe EXACTLY. I was officially diagnosed by a specialist today with ATN.

Anyway, I had this pain for about two years before it changed. The pain became more intense, more searing, and to add in I had electical shocks through my teeth that felt like it was going to explode my tooth into pieces. Ended up in the ER. When I saw the neuro today, he was not at all surprised to find out that these intense "ear" aches were actually early TN. He told me it was normal.

If you have not tried it before - moist heat for that pain is a life saver.

You may have nothing bad at all going on... may be nothing. But it sounds a lot like me.

6

Well hello there!

The folks here are great. Ask any questions you need. You are -not- alone. This is the most caring, educated and proactive group of level-headed people I've ever met in a medical setting.

I may ramble a bit but any information I share is offered in a complete spirit of caring and well wishes for you.

I'm so sorry that you have had to go through those experiences. Polyps are scary. Words of encouragement; just breathe and read info and relax as much as you are able. Everything between the doctor's appointments, sharing info with others in your life, reading about the possibilities, waiting for test results etc. can be so overwhelming.

I have polyps in my sinuses, as a side note. I almost fell over when they told me they found them and had to wait for a CT result to come back. Hang in there!

Yes, TN can be felt primarily in the ear and not the face. I have ATN. My pain is 85% in the ear. The other 15% is shared between the face and backside of my ear. It feels like a screwdriver being bored into my ear with no way of touching it or removing it. I can't express the pain and the helpless feeling. I'm a tough chick and I don't like to cry!

Have you noticed any triggers for your pain? Loud noises, high pitched noises, anything at all? If you can concentrate when the pain occurs on your surroundings and discover a trigger, knowing what causes the pain to spike can be half the battle! I found controlling my environment has led to a lowering of the pain in my ear substantially. High pitched noises set mine off; sirens, squeaky wheels at the grocers, people having squealing brakes from their car as it rolls to a stop beside me at a light...things like that. Now I know what to avoid. I also know now what to brace for.

If sound affects you, I suggest finding some cheap, silicone earplugs in a local gun shop (skeet) or for construction. They have a small nylon cord that connects the two and they are light, small and soft. Maybe $2. It hurts me to have them in but discovering this allows me to go to the grocery store now on my own and drive. I can use it for about 3 hours before the pain is too unbearable and I have to take them out.

Different medications work for different people. I took Topomax for about 6 years. I developed TN 10 years after stopping the drug. Haven't taken it since. The topomax may actually be working but just not completely. Speak to your Neurologist or read about different medications to see how other people have handled them, their successes and also specifically what the drug does etc. I have found understanding the way my body works and how the drugs affect my body will help so much! Now, whenever a different drug is suggested to me, I have this feeling of being more in control and having more power because I understand my body better. Definitely do not be affraid to ask your Neurologist! They are working for you! Never forget that or let them dictate your care without question. My suggestion as well, is to ask the Neurologist if they have ever worked with a TN patient before.

Good luck to you. I need to go try to sleep. Glad to see you've found us.

Best Regards,

Rockhopper

7

Thank you for your responses. Truth is, in doing my own research on this mystery pain, TN is the thing I stumbled upon that truly fits the description of what I’m feeling - and it’s freaking me out. In fact, the one ENT doctor who did my hearing test (which was fine, btw) said that she thought it was TN, too, something that she was diagnosed with after several misdiagnoses. The second ENT doctor who found the polpys dismissed that for now until the CT scan is concluded. The pain, when it’s there, and it’s getting to be more frequent - and lasting more often - is UNBEARABLE!

8

I am SO glad I've found you guys! Relieved that it's not just in my head (no pun intended).

I've discovered no triggers whatsoever. It'll come on when I'm happy, stressed, so-so.

I thought it was sleeping on my ear funky, originally. Then I thought it was because I wore earplugs. So I stopped wearing them (I used to wear them occasionally). Thought it was from wearing a headset at work, but I haven't been wearing it for a month. No relief.

No idea what the cause is.

Rockhopper said:

Well hello there!

The folks here are great. Ask any questions you need. You are -not- alone. This is the most caring, educated and proactive group of level-headed people I've ever met in a medical setting.

I may ramble a bit but any information I share is offered in a complete spirit of caring and well wishes for you.

I'm so sorry that you have had to go through those experiences. Polyps are scary. Words of encouragement; just breathe and read info and relax as much as you are able. Everything between the doctor's appointments, sharing info with others in your life, reading about the possibilities, waiting for test results etc. can be so overwhelming.

I have polyps in my sinuses, as a side note. I almost fell over when they told me they found them and had to wait for a CT result to come back. Hang in there!

Yes, TN can be felt primarily in the ear and not the face. I have ATN. My pain is 85% in the ear. The other 15% is shared between the face and backside of my ear. It feels like a screwdriver being bored into my ear with no way of touching it or removing it. I can't express the pain and the helpless feeling. I'm a tough chick and I don't like to cry!

Have you noticed any triggers for your pain? Loud noises, high pitched noises, anything at all? If you can concentrate when the pain occurs on your surroundings and discover a trigger, knowing what causes the pain to spike can be half the battle! I found controlling my environment has led to a lowering of the pain in my ear substantially. High pitched noises set mine off; sirens, squeaky wheels at the grocers, people having squealing brakes from their car as it rolls to a stop beside me at a light...things like that. Now I know what to avoid. I also know now what to brace for.

If sound affects you, I suggest finding some cheap, silicone earplugs in a local gun shop (skeet) or for construction. They have a small nylon cord that connects the two and they are light, small and soft. Maybe $2. It hurts me to have them in but discovering this allows me to go to the grocery store now on my own and drive. I can use it for about 3 hours before the pain is too unbearable and I have to take them out.

Different medications work for different people. I took Topomax for about 6 years. I developed TN 10 years after stopping the drug. Haven't taken it since. The topomax may actually be working but just not completely. Speak to your Neurologist or read about different medications to see how other people have handled them, their successes and also specifically what the drug does etc. I have found understanding the way my body works and how the drugs affect my body will help so much! Now, whenever a different drug is suggested to me, I have this feeling of being more in control and having more power because I understand my body better. Definitely do not be affraid to ask your Neurologist! They are working for you! Never forget that or let them dictate your care without question. My suggestion as well, is to ask the Neurologist if they have ever worked with a TN patient before.

Good luck to you. I need to go try to sleep. Glad to see you've found us.

Best Regards,

Rockhopper

9

My trigger continues to be chewing hard foods. Not sure why, but it caused it in my ear too... so soft foods and protein shakes give me less of a hassle if I stick to them.... sadly, I will have 3 days or 4 without pain, and then I eat food that requires me to really chew -- like a gorgeous salad, or a great hamburger... and then I REGRET IT!!!!!!!!!!

10

I think sometimes the not knowing is worse than the knowing. Questions answered just spur more questions. More questions spur feelings of helplessness. Feelings of helplessness spur feelings of depression, anger and/or denial or panic. Those feelings drive me to read more. And then, I have the not knowing again....

It can be such a vicious cycle for me. The one thing that has helped keep me solid is the people here.

Stay tough.

Rockhopper

11

Well good luck with your tests and I hope it turns out that you don't have TN or anything else!!! But if you do, you always have lots of friends and support here. :) Best Wishes Min

achingear said:

Yes, I realize that. Thank you. I have done research, just looking to find others who may have similar experiences or insight to share.

12

The thing that's making me nervous is that I definitely don't have an ear infection, which would be the simple explanation for the pain with a simple remedy.

Everyone's mystified thus far, not bringing me any comfort. The CT scan for a cancer screening is freaking me out.


And the suggestion that TN is the other probable explanation is also dire.

I just want this to be a fluke that will permanently go the heck away.

13

TN doesn't have to be dire though. In most cases, it is controllable.... the thing is that most of us are here because it is not. But this is a small sample size in comparison to those in the world that have it.

14

I will tell you something that my neurologist told me, the nerves can settle down, the pain can go away, get better, get worse, on their own. There is no set rule with nerves. There are periods of complete wellness as you have mentioned, you have times where you don't have any symptoms at all. Hang in there.
achingear said:

The thing that's making me nervous is that I definitely don't have an ear infection, which would be the simple explanation for the pain with a simple remedy.

Everyone's mystified thus far, not bringing me any comfort. The CT scan for a cancer screening is freaking me out.


And the suggestion that TN is the other probable explanation is also dire.

I just want this to be a fluke that will permanently go the heck away.

15

tests are used to disprove that theres nothing else left as a cause. ruling out the worst cause first. Theres a lot of key nerves there and its a sensitive area, so dont even go there. Today i feel itchy by all the tight areas and if i were out the humidity would block it. besides there are 3 branches and referred pain. Dont make yourself stressed for no reason. We would be cured if the nerves could really speak. The doctors dont know the answer. You are as normal as anyone else with nerve issues. I hope that helped. You could try placing sometning. even vaseline or baby oil.

16

Hi, I was diagnosed 12-14-11. I have been pain free for weeks now. I take carbamazepine 800 mg a day and an occasional Aleve to control my pain. The only symptom I have is ringing in my ears and a burning sensation in my right eardrum. It is a little bothersome but I worked out in the yard all day today. There is hope. Always.

17

I didn't have time to read all the replies so forgive me if I am repeating this. Yours and mine are called GENICULATE neuralgia, but I also have TN with it as well. Mine feels like an ice pick being jabbed into my ear. A warm pack that you put in the microwave helps mine some, as does a few drops of olive oil from a dropper, that is just a bit warmer than room temperature, but no warmer than that. I put cotton in my ear to keep it in there. I often have to use a foamie earplug because it gets sensitive to wind and noise. So many weird symptoms can be reported, like just a burning tongue or electric shocks on the roof of the mouth. It's all part of the trigeminal nerves. I hope you can find some helps here.

Best wishes, Sheila

18

Hi Sheila, You have described my symptoms, (before meds) to a T!. My pain is pretty much zero. I am on carbamazepine 800 mg and an occasional Aleve and it seems to be working. I have never heard of Geniculate neuralgia. I will do some studying for sure. Thanks for info.

19

Look in the tab above called "Face Pain Info" Thats where I learned it. Doctors barely even know anything about type 1 TN, much less atypical or pain from other nerves. Wikipedia.org might also have something about it. So happy to hear that your pain is pretty much gone!!

20

my pain usually always starts in my ears :(((