Not diagnosed yet, but beginning to wonder

[uvamomb]

I have been diagnosed with a myriad of things, but I am now wondering if most of my problems are coming from TN. I have had many root canals and about 7-8 teeth pulled, yet I still have severe pain in both upper and lower teeth and now my jaw and nose have started hurting. My neck back and side is unbearably painful. I want to cut it off at times. I can't pinpoint any triggers, but didn't know to look for them.

Other question - do any of you get swelling in your chin, behind your ear, down your neck, back of head and ear pain?

I was so bad today I couldn't even stay up - the pressure was horrible.

I'd appreciate any advice or comments. Thank you so much,
Kathy

[ToTs11]

Hi Kathy,
Welcome to the forum.
Sorry to hear your having problems, I can relate to the pulling teeth, I had 5 teeth out in four weeks and it made no difference at all.

Can you describe your pain to us? is it sharp and stabbing, dull and aching?
it gives us a better idea of what's going on.
I don't really have any triggers, not all of us TN'ers get them, my only trouble is caused by wind and the cold when out, other than that my pain is unpredictable.

I have pain all over my face and top of the head, and deep in my ears, I also have facial swelling sometimes, I often say I look like a puffa fish!

TN wouldn't affect your back, neck and side, this would be something else, it could be were you are tense from the pain causing your muscles to ache.

Have you seen a neurologist? you should be asking for a referal to one so that you can get a proper diagnosis.

I hope your soon feeling better.
Stick with us, there a great bunch of guys and gals here.

Tracy..

[Silver Swan]

Hey Tracy:

Wind and cold ARE triggers. Anything that sets up the TN pains is a trigger. I have trouble with wind and cold, and warm breezes and facial perspiration too. In fact, anything that involves my face in any way is a trigger. Even smiling! In my case, it is not pain that is triggered now, but the sensations I have since the Balloon Compression - tight feeling, tingling. burning, itching.

Shirley H .

[uvamomb]

Tracy,

It feels in my teeth just like they feel when they are abscessed, stabbing, like they are full of something pressing on my gums. My ears, chin, jaw, top of head feel like a 500 lb. man sitting on them, lots of pressure, unbearable pressure - and it sometimes extends to my nose - sometimes it feels like it's dead. I swell a lot under my chin and on the side of my neck. Does that make sense?

I'm going to a great Rheumy on Monday, so hope he can help me.

Thanks for your questions and for taking the time to try and help.

The pain is off the charts.

Thanks again,
Kathy

[Silver Swan]

Dear Kathy:

Has your doctor looked at your parotid gland? Your symptoms make me think of what persons with parotid gland problems describe. I am not a doctor or nurse - just wondering.

Shirley H.

[ToTs11]

Hi Kathy,
Going by your symptoms it does sound rather like Atypical facial pain, but then I am no doctor.
The crushing and burning sensations are all signs of atypical facial pain.

You need a referal to a neurologist for a confirmed diagnosis and the sooner the better.

TN pain, is described as sharp, stabbing, electrical, zaps.
I have had an abscess before and the pain from that was horrific, throbbing, but TN pain is different to what I experienced back then.

I hope you do manage to get to the bottom of what's causing your pain.

Stick with us, everyone here is amazing and kind.

Tracy :)

[uvamomb]

Thank you Tracy for being so kind, especially for getting back with me. I will let you know what the doctor says.
Take care of yourself, too.
Hugs,
Kathy

[uvamomb]

Thank you Shirley. I'm going to be looked over with a fine tooth comb on Monday, so we'll see. Thank you for caring,
Kathy

[crysopac]

Well my TMJ causes my neck and chin and all to swell. And then that in turn sets off my TN pain. Have you been checked for TMJ?

Crystalina

[koober1]

I had similar pain but I don't get the swelling. Well maybe a little. I get more of a rash. I was diagnosed with Chronic Paroxysmal Hemicrania. It affects the trigeminal and occipital nerves. It goes back into my neck and shoulder too. I went to dentists too cause the pain was in my jaw and teeth area sometimes. But I finally went to a pain center at Cedar Sinia where I was FINALLY diagnosed correctly after 3 years of "oh it's a migraine"

[NattyNat11]

How are you feeling? Any progress? I highly reccomend Dr. Graff-Radford at Cedars Sinai Pain Center. He is a lifesaver. I was having pain in my lower jaw initially. Went to the dentist and he told me I needed an emergency root canal and it was actually an upper tooth. From that point on I had a kizillion retreatments on the tooth, then they thought it was the neighboring tooth. The next thing I know I had NINE oral surgeries (including hard palate and jaw surgery). Don't waste your time with dentists any longer take it from one who knows...GO TO A PAIN SPECIALIST. I didn't want to believe I had TN for almost a year before I sought mine out. He diagnosed me IMMEDIATELY. I recently had the MVD surgery and let me tell you my quality of life is so much better that I dealt with and faced up to the pain. DO NOT let you fear get in the way...

Best,
N

[Fraalan]

It sure sounds like my atypical TN.
I had every pain you had except the nose pain.
Are you getting swelling inder your jawbone?
my swelling got so bad I was left to eat soup or liquids.
(At least I lost weight)
The neck pain very well could be a side effect from loss of sleep and the added tension.
Or your occipital nerve may have joined the party. I did get a occipital nerve block prior to my successful MVD and it didn't help.

I was told atypical is harder to fix, but they got me back 100% so dont let them discourage you. Also don't be afraid to seek a specialist in TN, I had bad luck with my neuroligist, found a great one and was pain free within 3 weeks.

I hope this helps you get well.