By Johnny Coomansingh
One year has elapsed since May 01, 2023, the date I underwent surgery for the terrible affliction known as the “Suicide Disease.” The following account will give some clarity about what I suffered for more than 20 years.
Severe and never-ending pain is nothing any of us would want to experience, especially the pain from the condition known as trigeminal neuralgia (TN). Trigeminal neuralgia, also known as tic douloureux, prosopalgia, Suicide Disease or Fothergill’s Disease is a neuropathic disorder. The condition is characterized by episodes of intense pain in the face originating from the fifth cranial nerve also known as the trigeminal nerve. The pain is so intensely horrible that some people would prefer to kill themselves.
The pain centered on the upper right quadrant of my face, affecting my eye, eye socket, eyebrow, eyelid, right nostril, cheek, upper lip, right side of jaw, forehead, and temple. This type of pain is more than just a typical headache or migraine. The tormenting pain scenario is erratic and unpredictable. On some days, pain episodes are very severe while on others very mild but I could never tell when there would be an intense flare-up. Sometimes I get sharp, piercing, electrical-like shocking stabs in my eye as though thousands of hot needles keep searing their way through my eye into my head.
Sometimes the pain comes down from the top of my head and spreads to my temple, right nostril, right cheek, and top lip. Some days the pain is dull and numbing with a constant triggering sort, almost like a blinking (shorting) light bulb switching on and off all day long during waking hours. For those 20-plus years, I had pain every day with 10 or more episodes per hour. Each pain episode lasted about 3-5 seconds with 3-5 minute intervals; during these episodes, the intense agony was excruciating and unbearable.
I read up a bit about my disorder and started taking vitamin B combined with other health supplements including inositol, L-Carnitine and alpha lipoic acid. I even tried preparations from the Biogetica company. Whether these several preparations worked I could not say. The literature said to use peppermint oil, sage oil and geranium oil. I bought them and started using them but to no avail. I bought Badger Headache Soother from the health shop. This had a little promise. I also used a Chinese rubbing oil “Shiling Oil” and/or a mixture of cannabinol (CBD) and tetrahydrocannabinol (THC) balm just above my right eyebrow. This topical balm had some temporary results before I slept.
I tried everything possible to help with my pain but it returned like a recurring decimal. I did not use hot water or anything else because just touching my face caused an episode. Nevertheless, I used moderately hot water to shower but even the water droplets were a trigger for an episode. I couldn’t even think about going outside of the house. Sea bathing was erased from my ‘list’ of activities.
Sometimes I didn’t know where and how to place my head on my pillow when I eventually went to bed. The act of simply walking could trigger an episode. Episodes of pain occurred during these activities: sneezing, blowing my nose, eating, chewing, swallowing, yawning, talking, brushing my teeth, touching my face, touching my eyebrows, washing my right eye, rubbing my right eye, wind blowing through my hair, and showering. I had pain episodes every time I showered.
I could have only speculated about what made my pain worse. It could have been the weather, the barometric pressure, cold temperatures, electricity in the atmosphere, maybe the moon phases – I really did not know. Apparently, sunlight triggered painful episodes when I opened my eyes in the morning, and this happened on some days, all day long. On bad days, the pain occurred about 60-80 times; 560 to 600 times per week. A pain episode lasted anywhere between 3-5 seconds or 5-7 seconds at 3-5 minute intervals. Pain episodes became unpredictable, erratic, and arbitrary, which terrorized me in the morning. Episodes of pain would also keep me awake and would awaken me at odd hours in the night…1:30 am, 2 am, 3 am…
This condition affected me for some time. I figured that this affliction started in the Fall of 1990. I was still living in Trinidad, (West Indies). I never took it on because I thought that the neuralgic pain would eventually go away. I felt the true effects somewhere early in 2003 when I was in graduate school at Kansas State University. In the fall of the said year, I started out as a visiting lecturer at Missouri State University, Springfield, Missouri. The pain became more intense at the university. From then on, I started having episodes of pain from late October to November. In 2009, I suffered two major attacks, one in March in Florida and one in December in Trinidad.
Intense pain episodes occurred almost every day while I was teaching class in the summer of 2010. In the summer of 2011, I also had severe pain episodes while teaching. I had, at this juncture, to stop teaching. Let me put it this way. I obtained seven degrees with a PhD as my terminal degree. Of course, I would have liked to work full-time, but at that moment, I decided not to continue working. I could not stand before a class to teach in that condition. There was a little relief from pain with very slight (mild) episodes in 2012. However, in May 2013, I started to experience increasing pain. My quality of life diminished by at least 50 percent.
Trigeminal Neuralgia restricted the quality of my life. I am an intellectual, a researcher in cultural geography and tourism, a writer, a poet, a singer, a guitar and cuatro player. This terrible condition limited me substantially. To play my guitar or cuatro (four-stringed instrument) or sing became more and more tenuous. Camping and fishing are always on my agenda, but that changed because of my new ‘lifestyle.’ Church attendance went downhill. Driving was at an all-time low. I have had serious pain episodes while driving and had to pull on the shoulder until the pain subsided. Nevertheless, I still found it necessary to write articles and poetry. To me, writing heals.
I got married on December 07, 2019. Two days later, I started getting intense Trigeminal Neuralgia pain. The pain went on until April 2020 and after about eight months it started again and ended in November 2021. During this period I was advised to increase the dose of the drug known as Carbamazepine (Tegretol) to 1600 milligrams per day. I also took Gabapentin (Neurontin), Carbatrol and Sumatriptan. In terms of ease, there was no effect; none! A doctor in Trinidad even administered Valium for me to sleep. I slept for the night but the pain returned in the morning. He also intravenously administered morphine and prescribed that I get two bottles of the stuff. I tried a couple doses but to no avail. I stopped taking morphine.
However, the Trigeminal Neuralgia began again in April 2022 gradually getting more severe and continued until April 2023. Despite my intake of medicine, the horrible pain was present every day, all day, all night, no stopping; incessant. There were times when the pain would go away for months and then it would return more violently. This time it did not! From that moment in April 2022, the pain grew worse. I certainly went to ‘hell and back.’ My wife did not know what to do. From time to time people came and prayed with me. Eventually, I concluded that I must do a craniotomy.
In March 2023 I arrived in Newark, Delaware and visited Dr Reynold Agard, my primary care physician (PCP) who referred me to Dr Pawan Rastogi, a neurosurgeon attached to the Neuroscience Institute of Delaware. He strongly advised that I do a surgical operation known as Microvascular Decompression (MVD). This operation (craniotomy) is concerned with the Right Posterior Fossa. The operation aims at releasing the pressure applied by a blood vessel on the trigeminal nerve. I was somewhat fearful because my brain would be involved, but the pain was too much to not take the “plunge.”
After the operation, I was housed in the intensive care unit (ICU) for 48 hours at the Christiana Care Hospital in Newark, Delaware. The next morning I woke up and touched my head, forehead, eyebrows, eyelids, face, nose, and even brushed my teeth. To my wondrous surprise, the pain disappeared. Since May 02, 2023, I have had no pain; it was my very own miracle. I am back in the saddle but not yet willing to ride into the sunset … thanks to Dr Rastogi and Dr. Agard. I am also grateful to the many great, wonderful and kind nurses who attended to me at the Christina Care Hospital.
It would be remiss of me if I fail to express my gratitude to Jennifer, my loving wife for being so patient and understanding while she took care of me during this experience. I must not forget Dr Lester B. Horrell, my brother-in-law and Ava my sister who gladly accommodated me and took care of me in Newark, DE, before and after the craniotomy. The many relatives and friends who offered words of comfort and prayers during my perennial ordeal must be lovingly acknowledged. Once again, thanks to all the beautiful people who witnessed my constant suffering and understood my situation.
