There is yet another disease lurking out there that many have not heard of but is starting to make headlines. It’s been called the “Suicide Disease,” because such a high number of those who are diagnosed with this disease end up taking their own life due to the chronic pain level, but doctors prefer to call it by it’s actual name: Trigeminal Neuralgia, for obvious reasons. October 7, 2013 has been named the first International Trigeminal Neuralgia Awareness Day and group of patients who met through an online support group have been working tirelessly to get the message out.
This is a disease that is known to bring grown men to their knee. Doctors who are familiar with it say it doesnt compare to any other pain that the human body feels, including heart attack, losing a limb, or child birth. The suicide rate is astronomical for those afflicted with this illness, and yet, I’m willing to bet that you have never heard of it. One joke on the internet explains this away by stating that the reason this disease has been kept as quiet as a hibernating bear in the winter time is because the pain is so severe, patients cant open their mouths to talk and tell others. Having been diagnosed with this disease in September of 2010, I do not find that joke entirely humorous.
Trigeminal Neuralgia is a disease in which one’s blood vessels and/or arteries become wrapped around the trigeminal nerve in the brain. As this happens, blood continues to pump through these vessels, but as it does, pain impulses are sent from the nerve to the face. In most cases, like mine, it only affects one side of the face. A majority of individuals who have this are over the age of 50 and have it on the right side. I am one of the statistical anomalies because I was diagnosed at age 22 and have it on the left side of my face. I couldn’t have one the lottery instead? It is comforting to know that there might not have been anything that I could’ve done to prevent myself from going through this, though. The cause is still very much unknown. In fact, if you search the internet for causes, the results are pretty eclectic. For example, there are some sites that say it is genetic, comes from issues with ibuprofen, stems from traumatic dental work, or id a birth defect. While it would be nice to know exactly where this came from, the fact of the matter is it is here to stay, so I need to move on.
There is not a cure for Trigeminal Neuralgia. There are several procedures that can be performed to try to alleviate pain, even temporarily, but the success rates aren’t consistent and each procedure comes with risks that might out weight the benefit for some. A popular choice for Trigeminal Neuralgia suffers is the Micro-vascular Decompression (MVD) surgery. It has the highest success rate, past medicine regiments that include anti-consultant medications and high level pain killers, that wear off quickly, if they are ever effective at all. The MVD entails going into ones brain and placing a padding between the affected nerve and blood vessel. The problem with this procedure is that it A) is BRAIN SURGERY! Literally. And B) The Trigeminal nerve has three branches, so there may be more than one place where the padding is needed. I am scheduled to meet with a neurosurgeon at the end of this month and am anxiously awaiting to get a scheduled surgery date. Another popular procedure is characterized by killing the affected nerve so you cant feel the pain, consequently, making that side of your face paralyzed. Do you see what I mean by there being no one good treatment plan? Add to the fact that most doctors have never heard of this disease and your family and friends keep saying stupid things like “…but you don’t look sick,” “At least you don’t have cancer,” and “I’ve had kidney stones before. Is the pain like that?,” and you have a recipe for a patient who could lose control of their mental stability at any time.
With all of that said, don’t panic! Just because I hit the medical jackpot doesn’t mean that you should avoid the dentist, have a genetic work up, and stop taking ibuprofen, all just in case. Instead, read up on Trigeminal Neuralgia. Try to be patient of those who are in pain, and if you have TN or know someone who does, try to help them in any way possible. This disease truely affects every aspect of your life. When I have the pain, I can’t take my dog out, chew or have a beverage, shower, have a fan or air conditioner on, walk, work, drive, have a hair cut, wash my face, apply make up, or listen to music because the vibrations hurt. Be sensitive. Be caring, Be understanding. Also, if you know someone who has TN, there is a host of support groups on Facebook for patents and love ones who have to deal with this disease every day. IF that is too much to ask, then I will make it simple. Monday, October 7, 2013 is the first International Awareness day. Wear teal to support the cause!
In September 2010, I noticed some pain in a tooth on the left side of my face. I assumed it was a tooth ache and made an appointment to see the dentist. The dentist couldn’t give a diagnosis, and instead claimed that there is no way that this pain is has anything to do with my teeth. The next few days became a blur of trips to the Emergency Room due to the pain level, doctors appointments with various specialists, a lot of crying, countless internet searches, and copious amounts of sleeping.