Keep it in the family

My seven year old daughter was rubbing her ear tonight. I asked her what was wrong. She tells me it is itchy inside and it hurts on the outside. My heart skipped a beat. This isn’t the first time this has happened. It is always the right ear. Just like the tooth that she will say in passing hurts. Always the first lower molar on the left. I don’t draw attention or make a big deal. Children are busy and the pain obviously quickly goes away. But inside I am freaking out. Am I over reacting? Do these twinches happen to “normal” people too?
I have a right to worry. I am the fourth woman in my family with TN–my great grandma, my aunt, my mom and me. It is my absolute worst nightmare that my daughter will have to endure even a portion of the pain that I have.
TN first hit me when I was 29. Like a ton of bricks. Hell on earth. Eight straight months of 24-7 pain, doctors, dentists, specialists and so so many pain pills. I was a mess. Finally my gp tried amitriptyline and it worked. I went off the med a year later to get pregnant and the pain was gone. Seven years later it came back. That was two and a half years ago and I haven’t been so lucky this time.
Looking back I have had symptoms for a very long time. The earliest one I can remember is my hot red ear and the crawling sensations on my temple. That started in highschool or maybe earlier. I had other symptoms in my 20’s in my mouth for sure. Just little things that make sense to me now.
My mom’s TN has been in remission for five years and my aunt only had TN while she was pregnant twenty years ago. None of us are type 1. My great grandma suffered badly and no one knew what it was back then. Tic de la reux is what they called it then.
Most doctors will say TN isn’t genetic but that isn’t true. I have come across many, many other people that have it in their families. And genetics is one of the most promising areas being studied right now. There is a team of doctors with the fpa that are studying the genetic aspects of TN. They are collecting DNA through several universities in Canada and the United States. I participated in their study through the University of Toronto. If you are interested let me know.
I have also learnt that familial TN is more likely to be bilateral and each new generation affected tends to get symptoms younger then the last.
Given the amount of unsuccessful surgeries being done for compressions I think that other causes need to be studied. Whether it is genetics, demyliation or structural causes there are definitely other things at play. My only hope is that they find some answers before my daughter would ever have to deal with this.