My first blog post about TN! Where do I start? It has been a long journey with many ups and downs, but I guess I should start at the very beginning...
When I was 7 years old, I was diagnosed with migraines. I had horrific headaches on the right side of my head. The pain was piercing for a short period of time, then it would go away completely, like nothing had ever happened. After a few minutes the pain would return, and this pattern would repeat. Migraines run in my family, so doctors suggested that must be the problem. We now believe this pain may have been connected to my TN pain. With occasional pain, I grew up having a fairly typical childhood. But when I entered my teen years, everything changed.
In July of 2007, I woke up one night with the most severe pain I had ever experienced in my right teeth. It felt like there was a knife stabbing through my top teeth. My mom woke up hearing me crying and yelling out in pain. The next day we went straight to the dentist, who found nothing wrong with my teeth. Other dentists in that office checked, and confirmed. We went for a second opinion at another office, and nothing. We visited the orthodontist who assured us this had never happened to a patient before and it could not be related to braces. We then went to my pediatrician, she put me on tylenol and codeine immediately and ordered scans. I should mention that I was also doing a show at this time and refused to quit. It drove my mother crazy. I was dancing on platforms 16 feet high and pushing through the pain. I have never let TN stop me from doing what I want!
We went to a chiropractor, who mentioned that my symptoms sounded like I had trigeminal neuralgia. She was the first person who noticed. We did some research online, and while my symptoms matched, I certainly did not fit the age category of most of those affected. This condition is most common in patients age 50+. It just didn't make sense.
Finally, we saw a pediatric neurologist who went to his bookshelf after hearing about my symptoms. He skimmed through the pages of a huge medical textbook. Then he told me that I had trigeminal neuralgia, and the diagnosis would be confirmed if the medication he gave me stopped the pain.
Unfortunately, these medications made me extremely tired, which made school difficult. It also affected my cognitive thinking. At that time, we were not as educated as we are now about what accommodations I could have received, and I learned to cope with the side effects. My neurologist gave me and my family incorrect information, and did not provide the support we were hoping to receive. It was hard working through the side effects in school, but my determination paid off. Sometimes I think about what I could have accomplished academically had I not been on medication. But then I think, maybe I wouldn't have worked as hard and I wouldn't be the persistent person I am today.
Through the years, my body has developed an intolerance to many of the medications used to treat the condition. I get hives on my arms, legs, back, and even in my hair. This is only the start - these side effects can get much worse if I continue these medications, and apparently it can get so bad that my throat may close up. Scary! In addition, my pain has gotten worse, and it affects my teeth, ears, and throat on both sides.
A few years ago, I had an attack that caused pain on both the right and left sides of my mouth. The doctors thought that the pain was so bad it radiated to the other side of my mouth. Having bilateral TN (pain on both sides of the face) is very rare. Only 3% of patients experience this. However, last summer I started getting a stabbing pain in my left ear that got progressively worse. It feels like someone jabbed a q-tip in your ear. It can happen at any time and totally surprise you, and it hurts like crazy.
In October 2015, I attended the TN National Conference and it changed my life. I learned about possible treatments, and learned that I could live without the pain and medications. We met some of the top neurosurgeons in the country, some of which lived close by and others that lived across the country. Of course we ended up wanting to have the surgery done by the surgeon from California. But that is another story for another time...
And there you have it! My TN story. I have TN1 and TN2. I was also diagnosed with geniculate neuralgia and glossopharyngeal (don't ask me to pronounce it) neuralgia. This means that my jaw, ear, and throat are affected. It also means I have 4 nerves affecting the pain, which makes my condition much more complicated (again, another post for another day). The mouth/jaw pain feels like a knife being pushed through my teeth (usually triggered by cold weather or stress). My throat pain feels like a piece of glass is stuck in my throat and is triggered by hot liquids. Lastly, my ear pain feels like I described above and is also triggered by the cold.
I am lucky because my pain is well-controlled by the medication. I have found ways to deal with side effects, and you probably wouldn't know I had this condition or I was on meds unless I told you. There are things that I love to do that may trigger the pain, but I'm not going to stop doing what I love. I love performing in shows, and I have never missed a performance because of TN. It is funny, when I am really into a dance or song, I usually don't have any pain. I've heard about this happening to other people when they do sports. I don't know why it happens, but boy am I grateful for it! The most important message I hope to share is that if you are going to be in pain whether you are at home or out doing what you love - choose to do what you love! I have no regrets as you can tell from these pictures, which were all taken during or immediately following a severe TN attack!
Over the next few posts, I'm going to explain why I'm getting the MVD almost 10 years after being diagnosed, why I'm traveling to California to have surgery, and updates on the MVD process. I'm sorry this post is so long - I had to cover almost 10 years of my life in a few short paragraphs! Thank you for reading! Always feel free to comment with questions and I will get back to you as soon as I can!