Thanks so much to all of you for the kind welcome. I had some log in problems and just now got back in. I am at work, so will need to check back for any replies later. New at this posting thing, so bear with me.

OK - 6 or 7 years ago I started having "ear aches". They were very sporadic and seemed to come out of nowhere. Usually up to 3-4 months apart. Family and primary care doc kept telling me you have inner ear trouble, infection, etc, etc GO TO AN EAR DOCTOR!! After one particularly painful episode this past March I decided to go see what they had to say. Went to ENT and had all tests ran - two MRI's on my head. Called me after the first one and said absolutely nothing found wrong with my ears, sinuses, or anything that would cause ear pain. However, there was a spot on my pituatary gland and they wanted me to get another more detailed MRI. A little panicked I went the next day and it came back ok - at closer look they found nothing. So ..... the ENT then sent me to a neurologist. He spent maybe 10 minutes and did a few reflex tests and said have you ever heard of trigeminal neuralgia? Of course I said No, and he responds with "go home and look it up" (I swear I almost believe he chuckled). Needless to say when I read about it I was shocked and horrified at the sound of it all. I called my highschool friend who is now a nurse practitioner and she asked all the same questions and agreed with him. Not liking the diagnosis so far I made appt with doctor at Vanderbilt here in Nashville. After a very detailed and thorough exam with a young doctor who just happened to be in a wheel chair with an apparent neurological affliction of his own. I was very pleased with him and have much confidence in him. Sadly, he agreed with the diagnosis as well.

But here is why I struggle with admitting I have TN: My pain is very much centered in my right ear. During these episodes the pain is constant, the ear is hot and very painful to the touch on the outside. This pain doesn’t radiate past the immediate area of my ear, but if I turn my head to the left it pulls on the ear causing greater pain. It hurts to open my mouth, and it is the most painful if I try to smile. I am thankful that I do not have to talk to people all day at my job. Oh, and during all this time, there are intermittent “ice pick” stabs deep inside the ear. I have never had anything similar to electrical jolts or any description that I have read so far. They do tend to come on in the morning while getting ready for work (with teeth brushing and applying makeup I know can trigger an attack). Now, they have gotten gradually more frequent, and last much longer than in the beginning. Heat pad always makes it feel better. Doc gave me generic tegretol to try only when I have an episode since mine are so sporadic at shis point. I had an attack last Tuesday and had to work all day, but when I got home I took my first one and lay down with the heat pad on my ear and in about an hour it started to ease up. Now, not sure if it was the heat or the meds?

So – that’s my story. Sorry to be so lengthy – but felt it was necessary. Should I prepare for the worst, and consider this to be pre-trigeminal pain? Oh, the doc also mentioned “atypical TN” which I would agree sounds a little more accurate.

THANKS AGAIN ALL, EAGER TO HEAR FROM YOU. I WILL CHECK BACK LATER.!

Thanks for sharing. It could be atypical but sounds pretty early for any true dx. but I am no doc .
I would say just keep getting all the info you can cause that is power your when you are at the docs you will know what to ask , you will understand the terms and such... and too talk to other t.n. folk get the book “striking back” I think it is in the stickies above.
You at least have docs that are fimular with T.N. and that is a good thing many aren’t so lucky when it comes to docs or dentists and knowledge of T.N .
Keep in touch and all the best in the coming weeks
Peace and Pain free days
BMW

I'm glad you're here!

It sounds like you have good dr's that care to help you manage your experience as you can. How wonderful!

For me it's been a life of maintenance and dealing for the past 23 years. The last seven or so have been so much better since pain management. I was able to get past the horrible panic of the next bad attack, etc., and life was able to come back to a management as opposed to being crippled in pain and fear.

Don't ever hesitate to private message or email me.

Again, welcome!

KD

Thanks for the encouragment - at this point, I don't let my dx comsume my thoughts, but I have always tried to hope for the best, but prepare for the worst. I know my pain doesn't effect the same area as all the classic cases, but I guess my Doctors here just throw it out there for lack of finding any other cause. Although, I feel that is better than being under diagnosed and treated for sinus, ear infections, etc. But on the other hand, I am concerned with my medical record reflecting this condition - if it is an incorrect diagnosis. It does appear on my medical record on my insurance website. I carry the health coverage on me and my husband, and fear if I ever had to (or chose to) leave my employer of 20+ years that I my become "uninsurable" and have to suffer a life of torment with no way to pay for meds. Yep, that's me - "Mrs. Worse Case Scenario". I tried to search for ear pain in the forums, but got nowhere due to 4 letter minimum key words. Earache turned up a couple, but nothing like mine.

OK, thanks again for the kind welcome and I will keep you posted on any changes. Please let me know if you run across any information that may be of help. I have read most of the websites, Mayo Clinic, Canada's website, and a host of others found on the web. A few of those you have suggested I have not yet read, but plan to.

Hi,

Has anyone mentioned Geniculate Neuralgia (also known as Nervus Intermediate Neuralgia)? Here's a link to a description -

http://www.umanitoba.ca/cranial_nerv.../index.html#gn

U. Manitoba has lots of good information about TN, GN and other cranial nerve disorders so check out the rest of that website and take any relevant info with you to your doctors and talk with them about it. Here's a link to their TN website -

http://www.umanitoba.ca/cranial_nerv...lgia/index.htm

Also, the TNA just had a regional conference in Nashville last May at Vanderbilt. Dr. Robert A. Mericle hosted and he's a neurosurgeon, but he's VERY caring. If you're happy with your current Vanderbilt neurologist, that's great, but if you call Dr. Mericle's office and say you were referred by the TNA, I'm sure he can confirm you've got the right one or hook you up with a neurologist who knows about all the cranial neuralgias and can help you sort out which one(s) you're dealing with.

There is also a TNA Support Group in your area with two contacts who can help you. You can get their email addresses from the TNA website at http://www.fpa-support.org/ then go to Patient Support (you have to register, but it's free and painless). Here are phone numbers for them -

Middle Tennessee, Nashville - Laura Hillis (615) 371-3205, Shirley Luscinski (931) 307-9481

Good luck and keep us posted.

Jean

WOW - Thank you so much for the new information. No, I have never heard of Geniculate Neuralgia, but will check out those links. Since I have only been for an initial visit to the Vandy Neurologist, I am happy with him so far, but will definetely get another referral if I feel it becomes necessary. After the first doctor anyone would be an improvement. I don't see my doctor again until mid November.

I will certainly let you know of any changes. Have a wonderful holiday weekend!

Rhonda

JEAN, WOW! I did a search on the Geniculate Neuralgia and am amazed at how accurately it describes my ear pain. Not sure which is worse this or the TN, but I am relieved and excited to finally see a name for my specific pain! I will certainly bring this up at my next doc appointment. I can't imagine why with my detailed description of my symptoms that the neurologist did not mention this. It appears from what I have read to be more rare than TN, but I would still have thought that a specialist at a teaching hospital would have known about it. Oh well, I will see what he has to say in November. Thanks again so much!

Rhonda

Hi, Rhonda,

Yes, any neuropathic pain in the ear points to that and it's very close in proximity to the Trigeminal Nerve, if my memory serves, so that those with classic TN and ear pain are probably either getting "cross talk" between the two or suffering from compressions to both nerve roots (I'm no doctor - this is just what I'm remembering from my reading and going to several conferences). It's pretty much the same issue, just a different nerve bundle. If you watch the MVD video on the Texas TNA website, you may be able to see the Nervus Intermedius. I'm sure some of the diagrams show both.

Alana Greca, Director of Patient Support at the TNA (Trigeminal Neuralgia Association), can give you more information on it as well as a networking list of others who've been diagnosed that you may contact. You can reach her at -

1-800-929-3608 patientrep@tna-support.org www.endthepain.org

Tell Alana "jeanc" sent you and/or give her your screen name here.

Jean