9 Years Remission, Is it Back?

Hi there,

The last time I was on this site was 2012 when I experienced TN type pains on my L side almost daily. Eating and pressure to my lower scalp were triggers, but sometimes there was no obvious trigger. I was 24 at the time. I had my wisdom teeth removed and then a root canal. 6 months after the root canal, no more pain. I figured it was due to my abscessed tooth and was happy to be done with the pain.

So in 9 years, I’ve been completely pain free. Despite having braces and developing mild migraines. Despite very stressful life circumstances. No nerve pain whatsoever.

Is it coming back now? Here’s my story starting last week:

Woke up with a very painful L jaw (tightness, dull pain, some small twinges of nerve pain randomly in/near my ear) and some ear fullness. Thought maybe TMJ. Went to the dentist same day, she said X-ray looks good and my teeth are in good health. She said it’s unlikely the culprit, but she will fix a cracked filling on my L side. She suggested a TMJ specialist or neurologist given my history with nerve pain in my face.

Done. Booked with my primary care to get a referral to a neurologist (required by my insurance). Need one anyway for my Maxalt refill for my migraines (which are few and far between).

Next day, I woke up with the same pain. Decided to go to urgent care to rule out an ear infection since I was having some drainage. I had impacted wax which they had to remove but no infection. Same day + daily until Friday, I had my physical therapist dry needle my jaw. The needles were immense relief to my jaw ache - but it was short lived.

I write to you now with a lidocaine patch on my face, 300mg CBD tincture ingested, B12 supplement ingested, and a heating pad under my jaw. Ensure, yogurt and blueberries were the entire menu for the day. The jaw pain comes and goes - it’s the worst in the morning; PT exercises and Tylenol/NSAID’s are dulling that pain well. Neck numbness, twitches/spasms in my face and behind my ear. The worst part: the very small shocks of pain in, behind, and in front of my ear - sometimes in my upper jaw/temple (again, just a twinge). These little electric bolts used to be my “warning” that an attack was about to happen. So far they have not progressed and I’m very thankful, but living in complete fear that it will get worse.

I went for a long walk today and cried the entire time thinking about how there may be a day where I can’t enjoy the wind on my face or my boyfriend kissing my cheek. It makes my heart break for everyone here that has to deal with this pain daily. My heart aches for all of you. Here’s to supporting one another. Any recommendations from you all are welcomed but not required!

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I hear you. I had terrible TN pain on the right side of my face. Many days of not eating or trying to swallow liquids, all the time wishing, hoping to lose the terrible pain. Finally one day it dissipated. It’s still with me and I take my nerve pills every day because I still get twinges. But the waiting is awful. I fully expect one day to be in pain so I live each day as a gift. And that is my advice to you. I read this forum religiously and thank god I don’t have some of the terrible problems that others have. So count your blessings and hang in there. Much love, Terry V

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I feel just like you, waiting for it to come back full swing.

Counting my blessings everyday!