Rachel Inbar

First post: May 16, 2021 Latest post: May 19, 2021
A few years ago, probably sometime in mid-late 2017, I started to notice a numbness around my mouth. At times it would be mildly irritating, and at other times it would drive me crazy. It felt as if I was constantly drooling, though the corners of my mouth were completely dry. I started always eating with a napkin, because of the discomfort. Often the discomfort was so intense that I'd walk around holding my face, which helped. This went on for quite a while - I don't remember if there were breaks or not, but sometime in late 2020, it seems to have faded away.

Fast-forward to April 13th. I started having what felt like a terrible earache. It was so intense that I knew I had to be seen right away. I immediately made an appointment to my GP and for an ENT, but then ended up calling the GP asking to be seen the same day. She said she didn't see anything around the eardrum, but that maybe there was some redness in the canal. She gave me drops... I hoped she was right and that they'd help. Each time I'd put one in it helped for a few seconds, but overall there was no real improvement. By the time I got to the ENT a few days later, I was sure he'd say I had a full-blown ear infection.

My ear wasn't infected. At all. Which left the neurological angle. He got me a rush appointment for a neurologist that afternoon. The neurologist didn't find anything, but recommended tests including a brain CT, an echo-doppler of the carotid artery, and a bunch of blood tests (testing for indications of an autoimmune disease, and clotting issues). He started me on Depalept, which seemed to do nothing... At my sister-in-law and brother's urging, I got a referral to the ER, where I was able to have the brain CT (clear). The neurologist there suggested I stop the Depalept, which (after a day) I did.

The pain kept getting worse. I got to the point where I could do exactly the things I needed to and nothing more. It felt like having two root canals on opposite sides of the mouth, simultaneously, and then having boiling water thrown at my face. And it felt that way for hours and hours.

The results of my blood tests were completely normal (at the ER too).  During these few weeks, I was also interviewing for jobs (and actually got one and have started working). Realizing that the pain was unbearable, I went to talk to the other GP in the office (just because he had an appointment available sooner). I explained the pain and numbness and the sense that my ear was being poked repeatedly with an ice-pick. He came to the same conclusion that I had come to several years ago when the numbness started. Trigeminal Neuralgia.

He started me on Tegretol, slowly working up from 50mg to 400mg per day. The pain has gone from a 9 to a 4 - so a massive improvement, but it's still somewhat debilitating, not to mention the side-effects of the Tegretol (my husband described it the best, as a jet-lagged feeling).

Periodically, I will get bouts of stabbing sensations in my ear - like every 10 seconds for 10 minutes. It's painful and distracting.  Multiple times a day, I will suddenly feel extremely hot and then my ear will start to throb. I'm really happy and thankful to be where I am. Compared to two weeks ago, it's a remarkable improvement. I still don't know what to expect in the future (like in the next hour, day, week, etc.) I'm still waiting to do the MRI in late June. Maybe by then this will all go away and I won't need it. Probably not.

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