My Clinical Trial Experience

Anne-Marie Clarke is a retired Family Court Judge. She loves to travel. She is grateful for the help she has found for dealing with trigeminal neuralgia (TN) through Facebook and support groups. She is most thankful for her dentist who didn’t treat the pain as a dental problem, for the endodontist who realized the pain didn’t require a root canal, for her primary care physician who was familiar with TN and made the referral to the neurologist, and to the neurologist who has listened patiently throughout this journey and made the referral to the clinical trial.

Hello everyone. My name is Anne-Marie Clarke, from St. Louis, Missouri, and I have trigeminal neuralgia.

December 5, 2018 was the onset of Anne Marie’s trigeminal neuralgia. Flying to Jamaica, the left side of her face hurt and her left eye was closing.

On December 5, 2018, my husband and I were getting ready for a trip to Jamaica, one of our favorite vacation spots. I was brushing my teeth when I brushed a tooth on the upper left side of my mouth, causing the most searing pain to shoot through my face. It felt like an electric shock that went up my face and into my head, stabbing and throbbing but eventually stopping. I immediately thought, “I’ll have to call my dentist about a toothache when I come back from the trip.” I had some naproxen from a previous dental visit and took some. The pain came back intermittently during the flight and the trip even as I continued to take the naproxen.

I visited my dentist on December 10, 2018, who thought it might be a dead nerve and referred me to an endodontist for a root canal. I saw the endodontist on December 19, 2018, who said there was good news and bad news; the good news was I didn’t need a root canal, and the bad news was I didn’t need a root canal. He said this wasn’t an endodontic problem and referred me to a neurologist. That appointment was scheduled for April 2019. I was still in near-constant pain and taking naproxen. I saw my primary care physician (PCP) on December 27, 2018, who referred me for an MRI which was completed on January 7, 2019. My PCP then referred me to a neurologist who I saw on January 28, 2019. When he gave me my diagnosis of trigeminal neuralgia, I told him that my misery now had a name. I was fortunate that I didn’t have unnecessary dental procedures and that I got a quick diagnosis.

Anne-Marie was presented with a Resolution acknowledging her service as Family Court Judge by the St. Louis City Board of Aldermen on January 11, 2019.

He prescribed oxcarbazepine and the dose kept getting adjusted. I was still having pain, which was triggered by talking. As a family court judge, I was required to talk a lot. When the pain became unbearable, I would pause and clench my jaw. It was usually brief, and everyone thought it was just the judge being thoughtful.

I retired after 33 years on the Bench in March 2019. If my TN is aggravated by stress, at least the stress from my professional work was over. I began Botox injections on August 20, 2019. I continue to receive more than 30 injections in my shoulders, the back of my neck, my skull, my temples, my face, my forehead, and my jaws every 12 weeks. There was improvement from the treatment. I was able to go for dental teeth cleanings and cosmetic facials, chewing wasn’t a problem, and I was able to give speeches. At my Botox appointment in February 2021, the neurologist mentioned a clinical trial he thought I might be a candidate for.

I was screened for the study on March 9, 2021. It was a double-blind study where participants would receive a daily dose of medication or a placebo for two weeks and, after a pause, a daily dose of medication or a placebo for two weeks. There was compensation for each office visit. I completed my visits on May 18, 2021. I believe I received the medication first, as my pain levels declined significantly, and increased when taking the second round of tablets. I am uncertain, though, since it was a double-blind study.

In August 2022, I was advised that phase two of the study was beginning and patients would receive a daily medication dose for two and a half months! Over the course of the trial, my pain level dropped to zero. Since ending the study in November 2022, my neurologist has continued to prescribe the medication.

Participating in the clinical trial allowed me to receive a medication that was truly beneficial for me. I was grateful for not only the opportunity to be a part of the study but to find relief from this disease. I urge everyone who is seeking something to help with facial pain to consider participating in a clinical trial.
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