About pain

Does anyone have swelling on the side of their head above the left ear? Then the pain gets worse and I have pain in my ear. I have been treated for migraines for 10 years. Sometimes the pain is a sharp jab and other times it aches or throbs.

I have that as well. Constant ear aches pains and sometimes they get so bad my face will go numb from the pressure building up in my ear and behind my ear. Thats when they figured out i had TN.I also have chronic migraines that i have had for over 10 yrs now. Now the pain is in my ear and behind my head and my face my V-1 and V-2

My right eye swells when mine gets really bad.

I don't get swelling but I get knots in my neck on the left side and running along between my neck and my shoulder. I'm constantly rubbing it. It gets worse from the slightest things like holding a phone to my ear for too long or typing too much or carrying/lifting anything. The pain does go into my ear and TMJ and then "you know where"! One Physiotherapist I had years ago would massage inside my ear gently when treating TMJ, it did help a bit. She'd put her finger in my ear and very gently push it back and forth.

Maybe that would help!

Yes! but mine is on right side. Swelling and alternating between sharp stabs or throbbing. Riana

I hope that I can help. My swelling started out small now it’s the whole half of my head and eyelids. It was determined that this is an Autonomic response. So it turns into Trigeminal Autonomic Cephalalgia or TAC’s. Migraine, cluster headache, proxysmal hemicrania, and hemicrania continua can all come with migraine features. I have CPH w/migraine , ON and TN. I get an incredible amount of face pain associated with my headaches, and an incredible amount of the neck and shoulder pain associated with my headaches. Please look at this discussion http://www.livingwithtn.org/xn/detail/2413731:Topic:337124?xg_sourc…

Sounds like my GN...hope not for your sake. I also suffered migraines long before my GN appeared. The aches, jabs and throbs, are what I get in between oxy doses...breakthrough pain. No swelling near the ear but I have had a swollen gland on the left side just under the jaw bone and I've had this swelling, tender to the touch, since I came down with the shingles 3 years ago. No one but myself seems to think this is remarkable but I think I still have the virus active in my system. Where my rash was still raises up and burns me by times and this gland thing.

I think I would try to get to your Dr. when this swelling is prominent. Sounds like a MRI might answer some questions. Maybe ask?

Hope you get to feeling better soon and get some answers. Let me know what you find out if you feel like it. I'm getting treatments now after having nerve blocks, Gamma Knife, and they're called P-Stim. I think they are maybe doing something, my breakthrough pain has been less since starting them. If you want to know more check out my page and my discussions.

Be sweet to yourself and get to feeling better.

PeacenLove Always~Laurel

if you get some relief from medicaiton like tegretol or neurotin it might help diagx if you have tn. that i how drs. finally decided i had it because the drug they use to treat it helped with some of the pain.

blessings for pain free days for you!

Mine starts with a headache, then the whole roof of my mouth aches, gums on the left side of my face aches, this is if I let it go too long before taking my meds. I use Advil, first thing in the morning Vicoden which I only try to use once a day.

Yes!!! My temple and upper cheek swell during particularly painful periods…my ear rings, my eye droops, and my speech becomes slurred as well. Hard to deal with indeed!!!

Forgot to add that besides the swelling and other issues I mentioned in my last post my vision becomes very blurry in the eye on the TN effected side…My MD seems skeptical about this being related but I’m positive it is!!!

My swelling has actually hardened over the years so you can see a definite "swollen" area. My right eye also suffers with itching and burning, especially during a break through of pain. Riana

That's exactly how my pain

is every time! EXACTLY! Plus after the pain is there for the second or third day in one of my "episodes" I feel nerve tingling in the top of my scalp, nose, cheek and the entire face area. I thought I was having issues inside of my ear when mine first started. I think I may have swelling. I'm going to check it out better next time and see. And it sometimes "itches" too on the inside of the ear.

The thing about PAIN...is that it is the worst. We feel helpless because let's face it, it controls us at times.

The pain that we know will flee is no threat. The pain that we don't know and that we're suspicious about is a different story.

I've delivered 2 children naturally and trust me I know pain.

But it passes and you get something marvelous in return.

But I know that this kind of tormenting pain is something entirely different.

I know that I still try to fight it and sometimes I succeed. But.....I also know when it's taken over.

I know that we can still fight this monster that haunts us. It doesn't have to be every day, or every week, or every month, or every year, some days I feel so down, but then there are other days when I feel above it all and those are the days that we need to hang on to.!!

There is always HOPE......:)

Strange isn't it how after reading all the posts I have come to the conclusion that patients know far more about this illness than the docs. Everyone keeps coming up with symptoms that the docs say are not related to TN but we all seem to have very similar symptoms. Interesting

Too true anan, that's why this site is so awesome!! The Dr's don't come by across it enough I guess but the Neurologists should know. The Neurologist that I seen knew almost right away, but mine might have been pretty basic by the time I got to her. My "TMJ" so called however should have been looked into more. 23 years ago a dentist took xrays and confirmed it was TMJ, then after the TN flare up and I had no idea what was what my dentist now took xrays with this really cool state of the art machine in his offices and said it didn't show TMJ?!?!?!?

From hearing other peoples stories and symptoms I'm thinking that maybe it morphed into some kind of unidentified "facial pain" that actually could be part and parcel of TN. Mine all runs along the same 3 parts.

I think I might ask the Dr. to send me for an MRI on my neck and jaw, since the last one was 5-6 years ago and even then it showed osteoarthritis in my neck and back and the Dr. I had at that time said my neck was way worse.

So now I'm wondering if my neck is too week to support my big head,lol, I wonder if that triggers flare ups??? Like maybe my neck is all compressed and that in turn compresses the TN and the sinus area??

I don't know what could be done about it though.
anan said:

Strange isn't it how after reading all the posts I have come to the conclusion that patients know far more about this illness than the docs. Everyone keeps coming up with symptoms that the docs say are not related to TN but we all seem to have very similar symptoms. Interesting

YES! I am SO glad to hear that someone else has a matching version of MY particular rendering of symptoms. My TN & ATN has been held in an amount of skeptical suspicion for YEARS because it centers in my ear. My MRI shows I DO have TN (THANKfully) but since the pain is not in the TYPICAL place, people (doctors) are circumspect.
I too, have those same pain &sensations just like you described, but I don’t ALWAYS have the swelling. Mine is somewhat lower and is very visible on my face.
It’s an unusual feeling to feel, can I say, almost “joy” that you experience the same since I’ve been searching for that likeness in accounts I read about. Now, of COURSE, please accept my most abject empathy for your situation, but know that your single post has given my distress a much-needed dose of pleasant diversion. “Thanks”?!?
Jay

LOL......misery does love company! It's the worst feeling to feel alone in a bad situation. My only regret is that I didn't find this site sooner. My MRI from the Neurologist in 2009 didn't show the TN but the technician requested the dye injection MRI because he did spot something peculiar, and wouldn't you know it, the dye injection didn't show anything. But I had all the classic symptoms in the "right" place so I did pass the TN test. lol. She put me on Tegretol but I was allergic, most pills and I do not get along. So I went on Gabapentin/Neurontin and the side effects are frustrating and I do get extra itchy but the Dr. says it's not from allergy. I only take 600 - 800 mg. a day, it's usually 600mg. I also had ear pain in the beginning of this madness. I used over the counter ear drops which helped a bit but I couldn't handle noise or anyone around me. It still flare's up every now and then. The Dr's couldn't find anything wrong with my ear, of course. I still hurt all day but more of a dull roar. I take an extra 1-2 pills on flare ups and I just hate the out of it feeling, it makes everything a total blur. I also use Flexeril and that helps too, way better than the T3's.

The main thing for me that has taken a long time to accept is all the things I cannot do now for fear of a flare up! I did too much yesterday and I'm paying for it now. I have my family coming over tomorrow for my Birthday and that includes 4 little sweetheart Grandchildren and I'm concerned about it. It's a bitter/sweet. The noise is the worst and picking them up, it's so hard to resist!!

Then of course the Christmas gathering which will be 2 of them this year. It's horrible to feel like this, most people look forward to it and I used to. I hated it when I had to stop hosting the family dinners. But I'm glad that my 2 grown children can now do it, would have been worse if this all happened while they were still young!!

I'm really hoping one of them shovels my walk. lol. that'd be an awesome birthday present!! Oh how things have changed!

But at least we have others who understand on this site, that is so important!!



DainBramage said:

YES! I am SO glad to hear that someone else has a matching version of MY particular rendering of symptoms. My TN & ATN has been held in an amount of skeptical suspicion for YEARS because it centers in my ear. My MRI shows I DO have TN (THANKfully) but since the pain is not in the TYPICAL place, people (doctors) are circumspect.
I too, have those same pain &sensations just like you described, but I don't ALWAYS have the swelling. Mine is somewhat lower and is very visible on my face.
It's an unusual feeling to feel, can I say, almost "joy" that you experience the same since I've been searching for that likeness in accounts I read about. Now, of COURSE, please accept my most abject empathy for your situation, but know that your single post has given my distress a much-needed dose of pleasant diversion. "Thanks"?!?
Jay

An earache was how I was diagnosed. It was one of my initial symptoms

Christine and Cheryl –
First, Christine, a big Thanks for your earache - well, YOU know! :o)
See, in the diagrams I 've seen, there’s only one teeny 5th cranial nerve branch that shoots over to the ear area and a bizillion to the face/jaw. Ha- it’s amazing to me when asked to describe my pain, that the ear-related descriptions evoke EMpathy from folks, but not-so-much from the face pains, which get SYMpathy only! So many people feel a kin-ship for that danged EAR pain. Gee, folks, they’re ALL rotten! (‘Course, I’m preachin’ to the choir here.)

Cheryl, I know the fear of doing anything - just dreading the worst. But take it from a long-time sufferer (15 years?) that a multi-tasking view should be used when you can. By that I mean, I let close ones know I’m going through an especially rough patch, while I smile as best I can and just plain endure as best I can so that life doesn’t pass me by! I would have lost most if the past 6 years had I not adopted that pattern. Let me deeply encourage you to ENJOY what you can, instead of FEAR the worst that mostly hasn’t happened yet. Otherwise, you must just loose precious LIFE time only because you’re apprehensive. For each and every life -especially for US- we have to TRY to enjoy. Don’t let fear alone ruin Christmas 2013: there’s no do-overs. It won’t be back for you OR your family, especially the little ones making grand memories of bonding family time. You DON’T want them to remember YOUR PAIN, do you??
(And it helps a lot to know SOME others understand FULLY! Thanks, guys - you know who you are, fellow neuralgia sufferers! You’ll help me have the BEST time this year instead of the worst.)
Merry Christmas TO ALL!!