About 3 1/2 years ago I started having what I thought was a migraine, a skull crushing, ice pick to the brain migraine. It went on for days, which turned, into weeks and soon my concern began to mount. I have a long history of migraines which began in high school and were usually provoked by stress, so I attributed it to my “burn the candle at both ends” kind of lifestyle.
By day I work as an Executive Assistant in Academia, and by night I am an Opera Singer. I’ve studied music most of my life and received my BA and MM in Vocal Music. Anyone that is a classical musician knows the kind of stress level that comes with acquiring those degrees, and living as a musician is even tougher. From the 14-hour days to the constant auditioning, and constant rejection, it is not a life for the faint of heart. I attributed my unyielding migraine to my stress level and attempted to deal with it with painkillers, muscle relaxers, and sleep. Nothing seemed to do the job and weeks of pain quickly turned into months, months of chronic, and at times, debilitating pain. Doctor appointment after doctor appointment yielded several diagnoses including chronic migraines, cluster headaches, and (my favorite), icepick headaches. These appointments also led to rounds of medications, medications that did very little, if anything, to help the pain. I became physically and emotionally exhausted, and what’s more, I was unable to sing. I put my life and my passion on hold.
One of the hardest things about this disease is the stress it puts on your life. It seems to leave a trail of destruction in its wake that reaches your family, friends, loved ones, and profession. For me, this was true in every area, but the most distressing was my inability to perform. I am lucky enough to have family, friends, and a significant other that are more supportive than I ever could have imagined. Their love and care during my time of pain are not something everyone can depend on, and I feel truly fortunate in that respect. However, pursuing a passion like Opera requires you, and your body, to be at your best on a regular basis. It is not forgiving. It doesn’t care that you don’t feel well. It demands perfection. The time needed to prepare for auditions, learn music, and polish foreign languages, was not something I had.
What I had instead were doctor appointments, acupuncture appointments, Cranio-Sacral massage appointments (also known as a small woman beating my muscles into submission for an hour, sounds relaxing, I know.) I had no energy left for the thing I have always wanted to do. Even if I had, the pain that came when my voice rattled around inside my head was too unbearable. Instead, I cancelled auditions, backed out of performances and tended to my health.
Finally, I was referred to a neurologist, a neurologist who I am forever grateful to. He immediately knew that I was not dealing with cluster headaches or even chronic migraines. This was something more nefarious, we just had to figure out what. My patience and fortitude was waning and almost every evening I was either emailing his office or calling, pleading with him to fit me in as I could no longer deal with the physical pain and mental exhaustion.
Finally, one morning during a last minute visit to his office, he said the words that would forever change my life, he said, “I think you have Trigeminal Neuralgia.” I was hopeful, confused, and had a million questions. He changed my medications and within two weeks, my pain was gone. Unless you have dealt with chronic pain, you cannot know the feeling of fairy dust and unicorn magic that comes when that pain is gone. It is better than sex, it is better than drugs, it is better than being surrounded by a thousand Ryan Goslings who each happen to have a new kitten for you.
I did achieve remission after I was put on the proper medication, but I have also suffered through bouts of break-through pain, sometimes lasting weeks, sometimes only days. It is something I manage on a constant basis, by adjusting my medications when necessary and continuing to pursue alternative therapies like acupuncture and massage, and anything else that might help. I would take up Extreme Ironing if it meant long-term pain relief.
If you are unfamiliar with Trigeminal Neuralgia, here’s a basic description of this disease, which I can only assume was sent from the depths of hell:
Trigeminal neuralgia, also known as tic douloureux, sometimes is described as the most excruciating pain known to humanity. The pain typically involves the lower face and jaw, although sometimes it affects the area around the nose and above the eye. This intense, stabbing, electric shock-like pain is caused by irritation of the trigeminal nerve, which sends branches to the forehead, cheek and lower jaw. It usually is limited to one side of the face.
I happen to have what is referred to as “Atypical Trigeminal Neuralgia” it’s a fun brand of the disease that is marked by non-stop, 24hour pain that can go from mildly annoying to HOLY GOD SOMEONE TAKE MY SKULL OUT OF THAT VICE, interspersed with the severe “electric shock” type pain of Typical TN. It is so much fun, that is if your definition of fun is having someone stab you in the eye repeatedly while you stand in line at the DMV. Maybe it is, I don’t know your life.
This disease is also known as the “Suicide Disease” because many of those afflicted with it have either committed, attempted, or thought of suicide. I sadly know from experience that it is aptly named. Also, it’s more prevalent in women than it is men. Why? No one seems to know exactly. Unfortunately there are still a lot of mysteries yet to be solved regarding this disease but there are a lot of people working on solving them.
I’ve been somewhat dogged in my quest to find research, support groups, virtually anything concerning this disease, but it wasn’t until someone in one of my online support groups posted about an upcoming conference, that I was introduced to the Facing Facial Pain Research Foundation. I decided to attend their October 2015 conference and I, along with my mother, was introduced to just some of the amazing people that are out their doing the sorely needed work to find new therapies and drugs to treat TN and a whole host of other neuropathic pain disorders. I happened to attend during a bout of pain, which honestly is the best place you can be, and was overwhelmed by the support and advice I received from the doctors, researchers, staff, and attendees. I had never been in a room with that many people all dedicated to helping you heal, and who really, truly understand what you’re going through.
When I arrived home in Boston, I felt rejuvenated and hopeful. I decided that I wanted to help. After I was diagnosed I realized just how unknown this disease is. I hadn’t a friend or family member who had ever heard of it, so I felt the need to help raise awareness and fund research. I decided to do the thing this disease had taken from me, to sing.
My goal is to put together the first concert performed by trained Opera singers in the Boston area, to help raise money for the Facial Pain Research Foundation. I figure, what better way to help stop this disease than by doing the thing it took from me? It’s like the ultimate revenge story.
For all of my fellow TN warriors out there, stay hopeful and take care of yourselves. You’re not suffering alone and please hear this, YOU ARE NOT CRAZY. Never let anyone make you feel that way and remember that you are your best advocate. Fight for the care you deserve
Allison Provaire