I have heard that TN is not genetic. I am 33 years old and have had 3 MVD surgeries. My last one was in May of 2013. For the most part I am doing very well. My father started having face pain about 2 weeks ago, he went to the Dr. today. They think it is TN. It breaks my heart, I would never wish that pain on anyone. When I was 27, I had Bells Palsy. It was on the same side as my TN. The TN didn't show up until I was 31. My brother is now 27 and had Bells Palsy a few months ago. I hope that the TN doesn't follow in a few years.... I just want to know if any of you have family members that also have TN?
I've had face pain for about a year now. I haven't been officially diagnosed. However, nobody else in my family has ever experienced this.
My neurosurgeon has a great heart for TN patients because his mother-in-law has it bad, and his wife is starting to show signs. It can run in families, but in my case I am the only one that has it.
It can run in families
Not most, but some
Do you have the book
Striking Back
In case your dad needs it?
Hi LeahL,
Yes TN can be genetic...although rare. I am the fourth person in my family to have TN. My great-grandmother suffered from horrific facial pain although they didn't know what it was. My aunt had Type 1 TN only when she was pregnant. My mom has had Bilateral Type 1 TN on and off throughout her whole adult life. She also has MS though so that can be a bit different. And now me--bilateral ATN. I was first diagnosed when I was 29.
There are studies being done into the genetic component of TN. I pasted an article below. I participated in this study through the University of Toronto.
http://www.cjnews.com/health/research-team-studying-genetic-component-trigeminal-neuralgia
And you are right...I would never wish this pain on anyone either and the most terrifying thought for me is that one day my daughter could get it.
I have 2 daughters and I pray they never get it. My dad's pain is worse today, it's starting to have more triggers. I have had the surgery, but I keep hearing that it isn't a permanent fix. The doctors had told me it was..
justjane37 said:
Hi LeahL,
Yes TN can be genetic...although rare. I am the fourth person in my family to have TN. My great-grandmother suffered from horrific facial pain although they didn't know what it was. My aunt had Type 1 TN only when she was pregnant. My mom has had Bilateral Type 1 TN on and off throughout her whole adult life. She also has MS though so that can be a bit different. And now me--bilateral ATN. I was first diagnosed when I was 29.
There are studies being done into the genetic component of TN. I pasted an article below. I participated in this study through the University of Toronto.
http://www.cjnews.com/health/research-team-studying-genetic-compone...
And you are right...I would never wish this pain on anyone either and the most terrifying thought for me is that one day my daughter could get it.
I do not have a copy of the book, I will have to look into it. I have never heard of it. Thank you.
Kc Dancer Kc said:
It can run in families
Not most, but some
Do you have the book
Striking Back
In case your dad needs it?
Justjane,
I’m grateful you took part of the study!! I was in contact via email with Ze’ev Seltzer and he’s very passionate about his research and a genuine nice guy!
Just wanted to say thanks for contributing to the study!
(( hugs )) Mimi
Leah, I’m sorry to hear about your family members, my deceased maternal grandmother suffered with facial pain not sure it was TN though.
(( hugs)) Mimi
justjane37 said:
Hi LeahL,
Yes TN can be genetic...although rare. I am the fourth person in my family to have TN. My great-grandmother suffered from horrific facial pain although they didn't know what it was. My aunt had Type 1 TN only when she was pregnant. My mom has had Bilateral Type 1 TN on and off throughout her whole adult life. She also has MS though so that can be a bit different. And now me--bilateral ATN. I was first diagnosed when I was 29.
There are studies being done into the genetic component of TN. I pasted an article below. I participated in this study through the University of Toronto.
http://www.cjnews.com/health/research-team-studying-genetic-compone...
And you are right...I would never wish this pain on anyone either and the most terrifying thought for me is that one day my daughter could get it.
I'm so sorry, it is definitely genetic. There are 7 in my Mother's side of the family that have had it. My Grand Mother and she had one daughter out of 9 children that had it, then her son in his late 20s had it now her daughter developed it as well. My Mother never had it and lived to be 81 but my brother died 2 years ago who was suffering badly after surgery and many procedures to cure it and my sister and myself. They told me at first it was impossible but it is not and My brother and I have it on both sides, that is TN1
Yes I do believe it does run in families. For years, my grandmother suffered with face pain, which she was told was TMJ. She would be triggered by air on her face all the time. I was diagnosed a year ago and when I figured out the triggers, I put together that she really probably had TN. Unfortunately, she passed away 5 years ago, from bone cancer, another crazy painful disease to have. I wish I would have been able to tell her she was misdiagnosed!