my TN started with swelling; first symptom I ever had. wasn’t on neurontin yet. no fever, no sinus issues. neurologist couldn’t explain it. would love to hear if anyone has been given an explanation that makes sense,
My doctor wasn't very helpful when I asked about it, but he is a GP and has only ever treated one other person with TN. Given that my swelling is around my eye I have had my eyes checked and there is no sign of any problems with them or of any permanent sight problems, in fact my eye sight on the affected side hasn't changed in over two and a half years, so they think it must be related to the TN - but no real explanation for it.
I just noticed that I have swelling on the same side as my TN. It starts above my eyebrow and goes down to my jaw.
Yes! My neurologist refuses to admit any direct link, but I swell during a flare on the side affected…generally my cheek and jawline areas…totally swell.
tell your neurologist that there are many others who ‘coincidentally’ have swelling with their TN flares. I’m in the medical profession & it amuses me how many of us still believe that there cannot be a connection b/c we can’t explain one…
What is better, heat or ice? Neither sound particularly good.
heat for me
Excellent, thank you…I have tried neither.
I have atypical tn and get swelling in face and lips. I use heat it makes it feel better but doesnt help pain or swelling. Hope it helps you
Thank you…I will give it a whirl.
Yes, it does!!! I have had some some degree of swelling in my face since this started. At times, it is not as bad but always there to some degree. My neurosurgeon told me you do not get swelling maybe I needed to go the dentist. I explained to him that is where I started when this awful illness initially hit me. IT IS NOT MY TEETH!! I always wondered if other people experienced swelling like I do. Good luck and I hope it is better today!! 
Hi Robyn yes I have swelling and a redness a little like teething rash. I have that today. Just been looking at holiday pics from last week and was shocked to notice the discomfort showing clearly when photos were taken. Much love x
yes, I get swelling not only on the outside but also in my mouth. Half my tonge swells so much I can't talk right. This TN has me hurting, swelling, ect.
I don't have swelling per se - however when my pain flairs up, I feel this overwhelming need to close my right eye (that's where my pain is - eyebrow, eyeball, cheekbone). I always end up squinting at everyone and I look like a deranged pirate!
Does anyone else have the squinting thing?
Hi everyone,
I've been suffering for 22 years; have had 2 (unneeded and misdiagnosed) sinus surgeries and tons of meds. I stopped taking Tegretol 10 years ago after a sever breakout of canker & mouth sores. I always connected my TN to sinus inflammation due to right side of my face- cheek and below my eye being puffy with every attack. Sinus saline rinse, NasaCort, Sudafed (the tiny red ones) , and high dosage of IBuprofen (800 x 4 times a day for anti-inflammation) helps. Then I realized that actually the inflamed tissues put pressure on the T nerve and cause the pain - not the other way around. I also found out taking MSG which is in everything under misleading names :( totally aggravates it; check out online to find out how it causes facial swelling. I'm going to an allergy specialist for a very detailed testing. I wonder if anyone has done a complete allergy testing or believes this theory makes sense?