The day my cousin Sheila died will forever be etched in my memory for a lot of reasons, not the least of which is how much I miss her and how quickly I lost her.
That morning, I woke up in a lot of pain and was home sick from work when my Daddy called to tell me Sheila was rushed to the hospital and it wasn’t looking good. In fact, he said if I wasn’t ready in the next ten minutes I wasn’t going to make it to the hospital in time.
I was already in such intense pain, though I did not know why at the time, I could barely comprehend what he was telling me. Fighting through the pain, I was ready to go within ten minutes, however, it was already too late. My cousin had the flu with some underlying immune issues, and even though she had been to see her doctor the day before her death, she still passed away.
Over the next few days, my discomfort grew worse. No longer isolated to pain, my right eye and cheek began twitching uncontrollably. The pain felt like a constant burning, and at other times it felt like someone was using lethal, surgical-like precision to boar into my gums with an icepick, punctuated by what I can only imagine being struck by lightning might feel like when concentrated on an individual tooth or block of teeth. Learning through having autoimmune disease and a background in healthcare that one must be their own advocate, I started researching what it could be. Having my suspicions, I started my diagnosis journey like so many others: by going to see a dentist.
After an exam, he told me what I really already knew- I had Trigeminal Neuralgia [TN]. Just to be sure, I followed up with my neurologist who confirmed I had Atypical Trigeminal Neuralgia [ATN].
Commonly referred to by medical professionals as the “Suicide Nerve” or the “Worst Pain Known to Man” (yes, ladies that does includes child birth and I am prepared to swear to it, having experienced both) the trigeminal nerve runs along both sides of the face and causes intense, electrical pulse-like sensations along the nerve, in addition to muscle and eye twitching, facial droop on the affected side, numbness, tingling, and in some cases, swelling. The electrical pulse zapping can occur for seconds to minutes and TN attacks can last days, weeks, or months. Over time, TN and ATN flares increase in intensity and duration.
Triggers for a flare most often include light touch, eating, talking, putting on make-up, temperature changes, the wind, and apparently grief. For me, I have to be very careful eating ice cream, slushies, or anything else cold that I enjoy. Believe me, there is nothing on this earth worth inducing a flare.
Often, patients will go to the dentist who will typically recommend a root canal or some other unnecessary surgery. Before obtaining a correct diagnosis, many even resort to having teeth pulled only to remain in pain.
ATN means you are exceptionally lucky because you get to suffer from TN symptoms on both sides of your face. The one blessing of ATN is that both sides are rarely affected at the same time. With ATN, the electrical pulse sensation is slightly less intense, yet the victim, I mean patient, suffers from an unbearable baseline of pain that never goes away during the entirety of the flare.
I must say it is a bit uncomfortable and humiliating to be knocked to the ground screaming and writhing in intense pain while clutching one’s face- people tend to give you strange looks and a fairly wide berth.
Going through all I have with health issues and near-death experiences, I think it is important to share whatever information I can that might save someone from choosing to take a hammer to their face, which during an ATN flare I still sometimes think could be a valid treatment option.
When you don’t know what is causing this kind of unimaginable pain, it would be easy to agree to anything- including teeth removal. I encourage anyone who is experiencing these symptoms to rush to a neurologist, or a doctor who specializes in diagnosing and treating diseases of the brain, spinal cord and nerves. You can start with a dentist, but I would still suggest following up with a neurologist before agreeing to any surgeries.
There is no cure for either ATN or TN. The condition usually affects women, is very rare, and generally occurs in those over the age of 50. When a younger patient is diagnosed with this condition, it can be indicative of Multiple Sclerosis, so again, it is advisable to follow up with a neurologist.
Options for treatment include medications for nerve pain, nerve block, capsaicin applied to the affected area, or Microvascular Decompression surgery.
MVD is also known as the Jannetta procedure and is a neurosurgical procedure used to treat trigeminal neuralgia and other cranial nerve neuralgias. For this surgery, the patient must shave half their head and are left with a fantastically brutal looking scar afterwards. There is no guarantee the surgery will be successful or how long the patient will feel relief.
Should I ever choose to go this route myself, I’m totally telling people I survived a bear attack. If you ever see a MVD surgery scar, you’ll know why.