This may sound strange, because when I got TN, I had never heard of it before. So it was very frightening to me, because there was no one else that knew what I was going through! Or so I thought. Any way, my Mother had Bells Palsy. I can’t tell you, now that I have become a member of this site, that I’m seeing alot of coincidences with different symptoms & conditions. Dental work, neck injuries, Bells Palsy, TMJ, Tinnitus, Herpes Zoster
( Epstein Barr Virus) etc! I have had all these things! But I can’t tell you how scared I was last week, when my 17 year old daughter told me that she had a funny feeling in her lower jaw & her bottom teeth felt sensitive. Then today she comes home & tels me her ear is hurting & she can’t hear properly. This disease is a mystery & I don’t know why we get it? But I am seeing alot of the same with our members. What do you think?
Hi Sally,
I've read somewhere (I don't remember if it was on this site), that it's possible that how the veins and arteries are formed in our face/head could be hereditary. Supposing TN is related to our veins etc. it could be hereditary. Then again, as far as I know, doctors are not sure about the etiology of this condition, so it's all just guessing! I can imagine how scared you were when your daughter mentioned those funny feelings in her jaw and difficulties hearing, but perhaps it's too early to think about possible TN, it could be many other things or just something temporary, something that never comes back..I truly hope the latter option is the case!
Oldriska
Hey Thanks Oldrisksa, yeah, it’s not like any one else I knew had TN, but I can’t help thinking that maybe it is, just as you described! How the veins & arteries are formed etc. I’m sure Red would be more of an expert here. But I just never gave it another thought until I saw all these similarities on this site. It’s okay, my daughter has just finished high school and she is of to ‘Schoolies!’ on the Gold Coast here in Queensland, Australia. It’s so exciting for her, so she does not have time to get sick! Schoolies is a huge celebration after graduating High school. The Gold Coast is gorgeous & the beach is amazing! It’s where all the ‘beautiful people’ are seen. I’m so jealous! It’s not even summer & it’s so hot! Don’t mean to brag, but I’m just a proud mum! I’m sorry to mention our lovely weather, especially when I know our American friends are doing it tough after Sandy! I hope y’all have power restored soon. Thinking of you, god bless. Sally
Your daughter is so lucky to have such a mom who is so proud of her! I was on the Gold Coast and the beach about seven years ago, it was amazing! It was March/April when I was in Queensland and I totally loved the weather (it was freezing cold in the Czech Republic then). I hope your daughter has a great time at the Schoolies!
Take care,
Oldriska
What I hear from medical doctors is that there is probably a hereditary factor in trigeminal pain. The daughters and nieces of TN patients tend to have about a 5% chance of experiencing this disorder, where the average incidence is about 12 people per hundred thousand population per year. The theorized "cause" of this connection is that blood relatives tend to have similar bone structure and similar vascular (blood vessel) systems.
The deeper "mystery" under all of this is that possibly half of the population are known to have vascular compressions of the trigeminal nerve, but only a tiny fraction of those will ever have chronic face pain. And vascular compression seems to be a primary (but not the only) mechanism in development of trigeminal nerve pain.
Go in Peace and Power
Red Lawhern, Ph.D.
Resident Research Analyst
Thank you for your input Red. Regards Sally
Hi Red , I’m wondering what the risk to a daughter is, if both parents have TN . My husband and I both do and our oldest daughter now 13 has had episodes of mild fleeting electric shock type pain to her temple and a pain in her ear that comes and go s. Needless to say I am so fearful but she is not aware thankfully . We will continue to monitor and have her straight to the children’s hospital if it happens again
Kaylee, it's impossible to predict risks to your daughter, because not many physicians are collecting data and TN is rare. From what you describe, watchful monitoring seems a prudent thing to do. If you haven't already started the process, I would also say that it could be important to her and to the three of you as a family, to be sure that she understands what you and your husband have gone through -- even if you don't introduce the idea that she could face some of the same. This disorder can be very isolating.
Sorry I can't be of greater help here. Some things I just don't know, and some things even the doctors don't.
Regards, Red
I read somewhere that it can be hereditary.
Thank you Red, Sally I know your fear . My daughter is having dental fillings this week. She developed cavities under her fissure sealants which is so disappointing. When I tried to explain my concern with local anaesthetic to the dental therapist she was dismissive.
A dental surgeon is now doing them under sedation and I’m about to email her with my concern.
I think this worry will stay with me for a very long time, perhaps forever .
Oh Kaylee, I can imagine your disappointment with the fissure sealants when they are supposed to prevent cavities! I’m wondering if they were even done properly in the first place? Or, you little girls teeth were cleaned properly before the sealant was applied. My daughters both had these fissure sealants applied & we had no problems at all. I’m wondering if your Dentist if at fault?
After I explained, in detail, to my grandmother about my face pain and my diagnosis she asked if I was sure it wasn’t my teeth. I told her that I was sure and my dentist is also sure. She told me about my great aunt, who recently passes away. That she had terrible pain attacks in her teeth. Grandma was there once when she had an attack. She said the were putting ice bags on her face and she was just in the most terrible pain she had ever seen. I asked if she went to the dentist and she did go. They pulled all of her teeth out, thinking this would stop her pain. It did not she continued to have attacks without understand them until she died. I thought that was very interesting I do have a relative that had TN she just didn’t know it. Just a coincidence or heredity? Quite seriously I have asked my dentist to pull my back molars a couple times, but he wouldn’t do it he would tell me he did think that would solve my problem. He didn’t know what would, but I am now so grateful that he didn’t do it.
FYI all... In their most recent newsletter, the Facial Pain Foundation (an organization affiliated with the TN Association) announced that they are funding a study to generate genetic profiles and extensive MRI imaging on patients who have Type I TN, looking for factors which predispose patients to develop TN.
In light of the discussion in this thread, I thought this might be of interest...
Regards, Red
Sorry typo .. My dentist told me he did NOT think it would solve my problem.
AlyssaBella said:
After I explained, in detail, to my grandmother about my face pain and my diagnosis she asked if I was sure it wasn't my teeth. I told her that I was sure and my dentist is also sure. She told me about my great aunt, who recently passes away. That she had terrible pain attacks in her teeth. Grandma was there once when she had an attack. She said the were putting ice bags on her face and she was just in the most terrible pain she had ever seen. I asked if she went to the dentist and she did go. They pulled all of her teeth out, thinking this would stop her pain. It did not she continued to have attacks without understand them until she died. I thought that was very interesting I do have a relative that had TN she just didn't know it. Just a coincidence or heredity? Quite seriously I have asked my dentist to pull my back molars a couple times, but he wouldn't do it he would tell me he did think that would solve my problem. He didn't know what would, but I am now so grateful that he didn't do it.
Much appreciated Red. Yes, very much so. Regards Sally
Here is the announcement of the pilot study, with a link for further exploration:
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We are seeking volunteers to pilot a scientific study of trigeminal neuralgia using EEG and MRI. This preliminary study is needed to provide early clues that will guide the overall objectives and procedures of a future formally designed study. This pilot will focus on two groups of subjects from among the broad spectrum of people with trigeminal neuralgia. Based upon these pilot studies, and depending on availability of research funding, a future study could include other groups.
Subjects for this pilot
1. Classic TN. One group is those with so-called “classic” trigeminal neuralgia, a syndrome of intermittent lancinating facial pain, a condition that is largely defined by the substantial relief from the medication carbamazepine (Tegretol) or oxcarbazepine (Carbatrol).
2. Anesthesia Dolorosa. The other group is those with so-called anesthesia dolorosa. Typically, those with AD may have had a prior history of classic TN, having failed medication, and have undergone a procedure on the trigeminal ganglion resulting in the loss of sensation to the face. Among those who undergo this kind of procedure some people develop a persistent facial pain in the territory of the loss of facial sensation.
Read the full post for more details and to sign up.
Regards, Red