Hi,
I know of no one in my family who has TN and yet my oldest daughter who is 21 called me last night about having shocks from her eye to forehead. She told me that she has had them on and off in the past but only one at a time. Now she is having them on a weekly bases. She has seen what I have gone through with TN and is now scared to death. I was just wondering if anyone else has inherited (don't know if this is the right word to use) from a parent or if a relative had it. I cannot possibly tell you the amount of guilt I feel right now if I have somehow passed this on to my daughter. Any input would be appreciated.
Thanks,
Shannon
Hi Shannon,
I am sorry to hear your daughter has also been having shocks - the area around the eye & forehead is called the V1 distribution. As for inherited or what is professionally termed as "familial" TN, it's still something that the researchers debate to this day, they can't really prove or disprove it as TN itself is so rare - to have it distributed amongst family members is quite unusual. But saying that, we also have and have had members here, all 2 of them I think - who have had family affected also. It's been a while and I'm not always the best with names (brain fog you see) but maybe they'll see your topic here and speak up about their thoughts.
The number one cause of TN as you know, is a compression by the Superior Cerebeller Artery just after it leaves the brainstem, but there are other causes and sometimes it's found in surgery to not be the SC Artery, but a bundle of veins instead. May I ask, what did your surgeon find during your MVD Shannon?
Though I can't give you a definitive answer Shannon, it is my opinion that it is possible to run in some families, depending on the cause of the TN. Out of the people like us who suffer / suffered this monster - the amount of us that suffer only V1 distribution pain is 4% (as before the eye & forehead are V1, but so is the nose). But before you go worrying to much further - I do suggest you get your daughter in to see a Neurologist who you approve of, or even taking her to see your Neurosurgeon - to get tested and diagnosed. As my Mum's fond of saying no good worrying before you know anything for sure!
Also, please remember that some cases of TN may be caused by other things, hence why testing for your DD is as important as it was for you.
Best wishes Shannon! I am hoping for the best possible outcome, as no one here would wish this monster illness on anyone, least of all your daughter! I hope there is another explanation for her pain. Oh yes, my first diagnosis on my TN route was a condition called Chronic Paroxysmal Hemicrania, I would have been your daughters age then. It fit the symptoms at the time - but then neither I nor my doctor had heard of TN or would even have considered it.
(((((HUGS)))))
Kerry xx
Hi again Shannon,
Oh if wish to research the possibility of TN in ones own family - then you would google "familial tn"
Cheers!
Hi Shannon,
Have you had any news yet about your daughter?
I ask because I have two daughters, both of whom think they have felt trigeminal pain. They are 27 and 33 years old. In the book "Striking Back", Dr. Peter Janetta estimates that 5 percent or more of TN sufferers have a family history of the condition.
He thinks it's because we inherit our parents blood vessells as wells as other physical characteristics. "Familial trigiminal neuralgia is commonly on the same side and generally starts at a younger age in succeeding generations." He goes on to say that bilateral TN seems to be more common in patients who have a family history of TN.
I hope and pray we haven't passed this on to our children. When I was having kids, I had never heard of trigeminal neuralgia and no one else in my family has ever had it.
My kids will both be seeing a neurologist this year, but not at this point. My oldest is starting a pain journal and my youngest is journalling rheumatoid arthritis and going to a rheumatologist first. That is more of a concern for her at this point.
Please let me know, if you feel like sharing, what you find out.
Thanks and best of luck,
Jackie
Hi, Shannon,
I just read your post and "yes" TN is hereditary in my family. I am one of the rare few on this site and another support site who has a lot of family history of TN. My Grandmother on my Mother's side had TN on the right side and she developed it in her late 70's. The family wasn't quite sure what the pain(attacks) were, when she started having the attacks. She was given baclofen, which didn't really give her much relief. Several years after she passed away my cousin, he was about 28 years old developed it on the same side. He suffered for years until finally he had radio frequency razotomy. Not quite sure I spelled that correctly. Then his Mother took TN shortly after he did, on the same side also. Years later his sister did. My brother took it shortly after my Aunt did, next came my oldest sister, then myself and now I have a younger cousin who just found out they she has it. Her father was the one who developed it at the age of 28. Most of us have had it on the same, right side, except for my older Brother & Sister and they have it on both sides. There is a total of (8 )of us. My Mother had 6 children, she didn't have it but 3 of us do.
My Neurologist and my Neurosurgeon said this was almost impossible with my Neurologist making the comment he would like to study this family history. He also said it would be so hard to understand just how TN could be hereditary. It definitely has something to do with maybe the shape "structure" of the head. I really fear that my daughter's will inherit this horrible thing are my grand children will. It is so strange that my Grandmother had 9 children. Only one of her children had TN but 5 grandchildren have and now one greatgrand child has it.
Linda
I'm sorry, Linda. I wish I had words to use that would express the compassion I feel for your family. I'm glad you're here on the site to support others.
Jackie