Has anyone else out there had bad facial swelling from a TN attack? A year and a half ago, I had a servere attack that came on slowly, few second sharp pains every couple of hours, to increasing closer and closer, (similar to labor… like every hour, then every half hour, then every 15 mintues, then the ultimate… lasting for 3 hours STRAIGHT) I had never, ever had an attack like that. My neurologist had a particular name for it, which ofcourse, I have forgot, but after screaming, and kicking my legs into a wall to divert the pain and crying all night until I had my medication to take (Tegretol, which took about 45 mintues to an hour to kick in)… I woke up so swollen!!! From my bottom jaw to above my eye. My photos have a couple pictures of it. I had my face injected later that day, but it was aweful. I even (to satisfy family doctors…) had my dentist take xrays to prove there was no infection or any dental problems going on. After my injection though… my swelling went down in less then 2 hours. Whew. My poor husband, we were newlyweds and he had never seen me go through an attack before and even though I had worn him and described attacks, I had NEVER had one that bad, so he and I were scared and he was pacing that house and begging me to take me to the ER. I told him there was nothing they could do… I would have to wait for my Tegretol to be filled. It was a terrible situation. I just want to see if anyone has ever had to go through what I have been through with the swelling and the prolong attack of more than several hours straight without relief. Please share your story.
My face used to swell during bad attacks too…my right side of my face like short circuited and I had like a 6 month long attack (I dont wish that upon anybody) …and my lymph nodes and cheek were swollen constantly. I kept thinking I had an absess in my teeth or some such too and had xrays done so I understand why you did it too. lol…its not a symptom usually posted on the medical websites but it happens its happened to a few of us.
Thanks for sharing Sarah… 
Oh Ann! I am sorry… I feel your pain. I know how it’s like to have medical staff scratch their heads and you actually know more about TN then they do! Have you ever been on Tegretol? I am glad you had injections, they helped almost immediately with the swelling.
NO.
During the early medication-stage (TEGRETOL) treatment of TN, I had direct-effect-side-effects that caused swelling; to put Toxic Epidermal Necrolysis in a perspective that won't make me cry, much, anymore. A lifetime of skin precautions can make you pay attention;) bob