My Personal Journey with Neuralgia Pain

I developed trigeminal neuralgia without any precipitating event in my right supraorbital and supratrochlear nerves in 2020.

One day while I was seeing patients in my office I suddenly felt what I can best describe as a sparking live power line making contact with my forehead. The area from my right eye up to the top of my scalp felt like it was being electrocuted. The pain was so excruciating that it made me freeze and I was afraid to move, talk, or open my eyes for the two minutes it lasted. Thankfully I wasn’t with a patient but my medical assistant considered calling 911 when she saw I couldn’t answer her.

Over the following month, I had multiple episodes a day lasting from less than a second to up to two minutes at a time. The pains were usually spontaneous but predictably occurred if I lightly touched the skin from my right brow, forehead, or the right side of my scalp. A strong breeze guaranteed an episode as did trying to wash my face or hair in that area. I learned to start counting the seconds when the pain hit because I knew that by the end of the second minute, the pain would stop. I tried the usual medications prescribed for trigeminal neuralgia like carbamazepine and gabapentin but they did nothing but make me dizzy and groggy.

Because I’m an emergency physician I know how to do nerve blocks so I started blocking my right supraorbital nerve. I was still getting pain towards the middle of my forehead until I included the supratrochlear nerve. I don’t know how I would have survived if I couldn’t do the blocks. Each time I injected the nerves, the pains would stop for about two or three hours and when they returned, I’d have to repeat it. By the end of the worst days, my eye would be almost swollen shut from the amount of fluid. 

Injecting Botox superficially over the painful area may have decreased the duration of episodes but it’s hard to say. I can say it made my right eye look smaller and my brow droopy. I injected steroid into the nerve which didn’t decrease the pain but did cause a bald spot in the middle of my eyebrow to complete my new post-stroke look. A neurosurgeon I consulted with recommended I continue doing nerve blocks as often as I needed versus having surgery or nerve ablation.

After about four weeks, the pains suddenly stopped but as most people with trigeminal neuralgia would expect, they returned. For four years now, I’ve had cycles of between four to eight weeks of multiple pain episodes daily followed by one to six months of complete remission.

Finding a treatment that stopped the pains

The pains started recurring last June, starting with a few momentary shock sensations every hour. I’d read about studies describing cases where prolotherapy using a 5% dextrose solution provided drastic improvement in people with different types of neuralgia, so I tried it. I injected just 1 cc of the dextrose injection under the skin of my right brow and the shock sensations stopped. It was hard to believe but for the following 48 hours, I only had a couple of bearable “zings” even when I washed my hair.

I did a second injection three days later and had no pains for the following week. When I started getting twinges of pain again, I’d repeat the injection and they’d stop again. About eight weeks after the pains started, they stopped recurring and have been gone since. That was the first flare period I’d experienced where I never had a pain lasting more than a few seconds. 

Only someone who has had neuralgia pain can truly appreciate how grateful and excited I am to have found a treatment that stops my pain. I hope the treatment is effective on trigeminal neuralgia in the other nerve branches but I haven’t seen any studies yet. 

I can’t imagine anything more gratifying than helping trigeminal and herpetic neuralgia sufferers relieve their pain. I’m willing to provide the injections to people during their pain flares although I can’t guarantee any improvement. 

– Cynthia Elliott, MD, Skinspirations

Dr. Cindy Elliott is the owner of Skinspirations as well as the clinician training facility, ExpertEsthetics. She’s personally performed over 29,000 esthetic treatments and taught her advanced esthetic injectable and laser techniques to over 250 clinicians. That means it’s likely that if you’ve had a treatment in Tampa Bay, the provider who did it was trained by Dr. Elliott.