I have read that Tn could be hereditary. I once met a woman who had Tn for 7 years and her daughter had it too, but at a lesser degree and was controlling hers with Lyrica. I have had Tn for 15 yrs. now and had suffered much pain when I was pregnant with my 14 yr old daughter. A few days ago my daughter had bitten into a cookie when all at once she had a unusual pain that ran all the way up her jaw. This had frightened us both wondering if this could only be the beginning of a nightmare of a lifetime. And now I'm wondering if Tn could possibly be predisposed in our genes and is so, is there anything that she could do now to prevent this from happening to her as well. I would not wish Tn on my worse enemy let alone any of my children.
I don't know the answer to this, but I am wondering the same thing. I am wondering if TN is on a spectrum of headache disorders. My son has constant head sensitivity as well as migraines. I am wondering if there is a connection between his head pain and my TN. I suppose one thing that should always be considered is a good diet. Especially one that meets the requirements (not necessarily exceeds them) for B vitamins, D, omega oils and I am not sure what all else. I guess all health starts at the diet level. However, what else? I don't know. I wish I did.
If it were hereditary then it maybe due to the formation of blood vessels being close to the nerve, the same formation running in families? I think also you start to look out for patterns that may not be there, because you dread it so much.
I had heard about the formation of blood vessels being one of the main culprits, but I have also heard that inflammation might be a culprit, too. If the latter can be a trigger, then that may be an interesting avenue of study in the future. My son and I both have autoimmune diseases.
I had never heard of TN until January 25, 2007. In my large family, no one has had anything similar. For what it's worth, I am the 6th (age 55) of 7 children, ages ranging from 53 - 67.
Here is what some experts say,
"There is some evidence that the disorder runs in families, perhaps because of an inherited pattern of blood vessel formation."
http://www.ninds.nih.gov/disorders/trigeminal_neuralgia/trigeminal_neuralgia.htm
"It is not hereditary."
"There is some speculation that some cases of trigeminal neuralgia may be inherited."
http://facial-neuralgia.org/conditions/tn.html
"Familial trigeminal neuralgia is infrequent."
I am not an expert, and going out on a limb, I believe that TN is not contagious. bob
The incidence of TN between parents and offspring is somewhat higher than in the population overall. About 3-5% of children with TN will have a parent who also had TN. Likewise, it is fairly common for TN patients also to deal with migraine headaches. But from what I've read, the reasons for this co-morbidity are not clear. For patients under treatment with anti-convulsive medications, it is particularly important that blood levels of Vitamin D be monitored and maintained at appropriate levels, as Vitamin D deficiency can be a side effect of such meds.
Drat....I am already low in vitamin D. Thank you, Red.
Booklass
I also have an autoimmune desease, it came on the same time as the TN. When i saw my Rhumy she did not think they were connected, but my Neuro thought may well have been and was interested in the link. But had not come across it before.
booklass said:
I had heard about the formation of blood vessels being one of the main culprits, but I have also heard that inflammation might be a culprit, too. If the latter can be a trigger, then that may be an interesting avenue of study in the future. My son and I both have autoimmune diseases.
Booklass, I take Vit D tablets, when i remember! to help with the steroid side effects.
Trigeminal Neuralgia - Primary
DISTURBANCES OF SULPHUR-BEARING AMINO-ACID METABOLISM
I have the flowsheets and blood panels that indicate, although mostly "unremarkable", I lack in Vitamin D and Leucovorin.
LEUCOVORIN: NDC: 00054-4498-10 Retail Price: $1199.89 Your Insurance Save You: $1174.89.
VITAMIN D: 3,000IU: Not covered by insurance:(
That was in April, nothing new happened yesterday. bob
http://www.livingwithtn.org/forum/topics/summary-of-your-visit-472011
Elstep, that is basically my situation, too. My Rheumie thinks it is highly unlikely that it is related, but my Neuro thinks there could be a link. Personally, I don't think it is happenstance, but it could be that the autoimmune disease does not cause the TN so much as whatever causes the autoimmune disease is the culprit. But who knows? I take 6000 IU of vitamin D because I keep coming up low with each dosage increase. I forget a lot, though. I need to do a pill case now. One of those M-Sun numbers.
Which happened first, your TN1 or your autoimmune? How close together did your occur? Are you TN1? Do you have any other pain?
I began with TN1 - electric shooting pains in face. This was brought under control with meds. Now I have teeth ache and various other aches in the face. I can cope with this and it is not continues, just hoping it does not become worse.
Elstep, I am not sure which came first, really. I have always had "teeth" pain that I now suspect was TN, and I have had one or two burning mouth, face pain attacks that probably were TN.....but if I were to guess, I would say that the autoimmune disease might have been the first to show up. On the other hand, the two may have been at the same time, I just didn't recognize the signals. Shrug! I have TN2, with the constant background pain to some degree and the sharp shooting pains that are controlled by my meds. I also have joint pain, fatigue, dry mouth etc... due to Sjogren's.
that sounds like the same story as mine Booklass. My GCA should clear eventually i think this is the same for Sjogren's, I remember reading one of the Williams Twins has it? How long have you had the conditions?
Actually, I've had symptoms of joint problems since I was 19....maybe even earlier since I had such severe "growing pains" for a long time. A couple of doctors told me that there are no such thing, but I am not sure what the general consensus is on that. I was let out of the Army because of localized joint pain, but it spread over time. The Sjogren's started in my late twenties, maybe a little earlier. I'm 49 now. No, it's not going away. It has only increased over time, but that does not mean it will keep increasing.
Until you talked about GCA in your introduction, I had never heard of it!
elstep said:
that sounds like the same story as mine Booklass. My GCA should clear eventually i think this is the same for Sjogren's, I remember reading one of the Williams Twins has it? How long have you had the conditions?
Has your TN also increased over time? Have you had your TN for all that time too? Do you also have R/A?
It is another of these rare conditions, like TN, it mainly effects females over 50. I was 51 when I got both.
Although TN is more common in women than men, and most often emerges in the decade of the 50s, medical science is learning that both the incidence rate and cases at earlier ages are much higher than once believed. The TN Association has reported cases as early as infancy. Significant numbers of teens and people in their 20s or 30s are being identified, and are requesting MVD surgery much earlier in the course of the disease.
The number of new cases per hundred thousand per year is also about three to six times higher than reported in the single series of post-mortum studies performed in Rochester MN in the 1980s. When Claire Patterson, the former President of the TN Association, addressed national conferences of the American Neurological Society, she would ask the questions "How many of our audience are practitioners? And how many have treated a case of Trigeminal Neuralgia in the past year?" According to Claire, hands were always raised by more than 90% of the doctors in the room.
It is also being learned that a significant number of TN cases are mis-diagnosed and mis-treated as Temporo Mandibular Joint disorder. My personal guess is that as problems of TMJ definition and diagnosis are sorted out, we're likely to learn that the incidence of TN is not 4 cases per hundred thousand population per year, but more like 40 to 100. That's still not common. But it's a population cohort large enough to get Big Pharma more interested in developing effective medications with fewer side effects.
Regards all,
Red