No cause for trigeminal neuralgia with swelling of face and lymph in neck on one side?

Question

I've been having these symptoms for about 7 months- pain on one side of face from cheek/jaw area to my ear and down into neck.  I had tooth pulled pain didn't go away, went back to dentist, nothing found.  Been to regular doctor several times, first for throat infection with fever and antibiotics had little effect. Pain not cured by pain killers. Lymph in neck is swollen and does not go away.  Face started to swell.  Then large lumps under arm began, antibiotics did not work and had allergic reaction.  Regular doc referred me to a neurologist who diagnosed trigeminal neuralgia and prescribed anti-seizure and anti-depressant.  Had MRI and EEG.  Tests showed nothing.  So now I am not sure what to do, I am 23 and can't live the rest of my life like this. The pain wakes me up at night and I have very bad head aches.  What is the next step to take?  Any similar stories?

Jarileigh · Answer

I have the EXACT same symptoms you describe. The dentist wanted to take out 3 teeth on one side, but I declined. My Grandmother had TN. I have swollen glands, and swollen lymph nodes under my arm only on the side affected. The pain makes me physically cry. I wake up with it, which I've read is not common for TN. Antibiotics do nothing, and painkillers very little. 
 And mine switches sides, but is never on both sides, much like a migraine,
 I have 2 discs messed up in my neck, I wonder if this could contribute?
 It also feels, and sometimes appears, that I have sores on the affected side, very painful sores.
 I've been taking neurontin for neurological pain from a spinal disorder for many years before this awful thing presented.
 Any info appreciated, and I hope everyone with this wretched condition finds relief.

bonnie_inTennessee · Answer

Hello Jessica................
I've been dealing with TN for over 40 years (am 66 right now) and am having an attack now....which sent me hunting for anyone with similar symtoms.
This is only my second time for the face swelling and lymph node swelling in the neck.   The pain is horrible today and I thought about going to the dentist or doctor again.................they've already taken out healthy teeth thinking it would help so I am skipping the doctors this time.   Instead I went hunting for anecdotal information.   It truly made me feel better mentally if nothing else.   I am so glad that I am not alone in this horrible situation.   Anyway, maybe it would help for you to read some of the comments on this site:
http://www.livingwithtn.org/forum/topics/facial-swelling?id=2413731%3ATopic%3A36276&page=1#comments
I truly wish you luck and some kind of warm fuzzy.   May your pain subside SOON  (mine too)  :-)    bonnie

jessica41277 · Answer

What about the swelling and lymph node involvement? I ask because I have TN and have just experienced what she is describing for the first time. It is so different than my usual TN episodes that I thought it was something else entirely, yet found it odd to be on the same side as my TN and to have some(not all) of my usual TN pain. I have not found any sites that inlude swelling or lymph node involvement as TN symptoms. Can you please clarify this for me? I would be so grateful.

anuragsrivastava · Answer

Hi, Thank you for your question. Trigeminal neuralgia as you have typical one sided facial pain extending to temple and eye( ophthalmic branch of trigeminal nerve may be involved) and sore gums of the teeth of same side (maxillary branch of 5th nerve). Trigeminal neuralgia may have a triggering factor like recent history of tooth extraction, touch, cold breeze or hot sensation etc. which you need to evaluate and avoid. Drug of choice for trigeminal neuralgia is carbamazepine but as the dose may vary according to severity therefore I would advice an oral medicine specialist consultation or at least a physician to confirm this diagnosis and get you treated accordingly. Take care.

nancy99n · Answer

Trigeminal Neuralgia is usually diagnosed after ruling out all other possibilities and listening to the patient's symptoms.  Usually it's described as an intermittent electric type shock or jabs.  It does manifest as a "toothache" like pain also and lots of people have unnecessary dental work because of that.

You describe waking up at night from pain and bad head aches.  That sounds a bit different, although it just may be another "flavor" of TN or TN-related disease or it might not be TN at all.

I would suggest you find a Facial Pain Specialist at a large teaching hospital.  These doctors deal with Facial Pain patients on a daily basis and, in my personal experience, were more helpful than my neurologist, internist, ENT, dentist, and orthodontist.

You need to confirm the diagnosis and then you can explore your options.  If it IS TN, the anti-seizure meds should be controlling the pain.  Have they increased your dosage up slowly?  The MRI should be a "thin-slice" MRI (also called Trigeminal Neuralgia Prototcol) to look for a blood vessel/vein pressing on your TN nerve.