I am not the only one in my family with TN. My great aunt was recently diagnosed. We also share another diagnosis: Acute Intermittent Porphyria. If you've never heard of AIP, it is a rare genetic disorder. Wondering if there is a connection........ Her TN is also in the v3 branch, which is the main one I have affected.
Happily you didn't mention glaucoma, medphysicsRB.
WWtET, I could put it in Klein bottle, but that's not rocket science.
Hi WWtET,
'I'm not sure why you are citing MS since TN and MS are not the same disease. Just because they share similar disease manifestations does not necessarily mean they have the same cause. If it did,one would probably lead to the other, at least occasionally, and they don't.'
Which is something you don't know for sure as you mentioned about the cause.
'MS sufferers can get TN but TN sufferers don't develop MS. Thank God.'
How rare is TN (in comparison with MS and, say, breast cancer)? Looks like it's rare enough to increase sufferers' credibility through intrafamilial genetic testing.
'I'm not sure what you mean by healthy nerves conducting wildly.
I'd have said any nerve "conducting wildly" was not healthy, by definition. If you care to clarify?'
Context of course.
'The weather does not cause TN so whether the wind sprung up in October or July makes no difference. Co-existence does not prove causality.'
Assumption about lack of co-existence doesn't disprove lack of causality.
You couldn't put anything in a Klein bottle, Lisa, other than a mathematical abstract, and even that's debatable.
Lisa said:
Happily you didnāt mention glaucoma, medphysicsRB.
WWtET, I could put it in Klein bottle, but thatās not rocket science.
Now you're just writing bad surrealist poetry. As life is short let's do one at a time. "Context of course"
Meaning what?
Lisa said:
Hi WWtET,
āIām not sure why you are citing MS since TN and MS are not the same disease. Just because they share similar disease manifestations does not necessarily mean they have the same cause. If it did,one would probably lead to the other, at least occasionally, and they donāt.ā
Which is something you donāt know for sure as you mentioned about the cause.
āMS sufferers can get TN but TN sufferers donāt develop MS. Thank God.ā
How rare is TN (in comparison with MS and, say, breast cancer)? Looks like itās rare enough to increase sufferersā credibility through intrafamilial genetic testing.
āIām not sure what you mean by healthy nerves conducting wildly.
Iād have said any nerve āconducting wildlyā was not healthy, by definition. If you care to clarify?ā
Context of course.
āThe weather does not cause TN so whether the wind sprung up in October or July makes no difference. Co-existence does not prove causality.ā
Assumption about lack of co-existence doesnāt disprove lack of causality.
My sister was just diagnosed with TN last month, onset about the same age as my TN (age 55). Same side of face, same triggers except for she is sensitive to warm food, I am not. No known TN in our family other than us lucky two.
Mollycule
I could put mentos and Coke in a Klein bottle. Question is whether I want to and that is not debatable.
Woman with the electric teeth said:
You couldn't put anything in a Klein bottle, Lisa, other than a mathematical abstract, and even that's debatable.
Lisa said:Happily you didn't mention glaucoma, medphysicsRB.
WWtET, I could put it in Klein bottle, but that's not rocket science.
Let's do, of course. Context.
Woman with the electric teeth said:
Now you're just writing bad surrealist poetry. As life is short let's do one at a time. "Context of course"
Meaning what?
Lisa said:Hi WWtET,
'I'm not sure why you are citing MS since TN and MS are not the same disease. Just because they share similar disease manifestations does not necessarily mean they have the same cause. If it did,one would probably lead to the other, at least occasionally, and they don't.'
Which is something you don't know for sure as you mentioned about the cause.
'MS sufferers can get TN but TN sufferers don't develop MS. Thank God.'
How rare is TN (in comparison with MS and, say, breast cancer)? Looks like it's rare enough to increase sufferers' credibility through intrafamilial genetic testing.
'I'm not sure what you mean by healthy nerves conducting wildly.
I'd have said any nerve "conducting wildly" was not healthy, by definition. If you care to clarify?'
Context of course.
'The weather does not cause TN so whether the wind sprung up in October or July makes no difference. Co-existence does not prove causality.'
Assumption about lack of co-existence doesn't disprove lack of causality.
Ah, I'm sensitive to hot food too, and sweet - lucky me. But I wonder what you and your sister have done to share the joy like that? Is it lifestyle, do you think? I ask because I'm the only one in my family and wonder if there was, or is, something about my lifestyle that made the genetic link come up. This is working on the theory that this guy is right, of course. He might not be. Although certainly so far our poll is showing a high incidence. I'm adding you in.
mollycule said:
My sister was just diagnosed with TN last month, onset about the same age as my TN (age 55). Same side of face, same triggers except for she is sensitive to warm food, I am not. No known TN in our family other than us lucky two.
Mollycule
Lifestyle not same, we do each have two kids. I still have same husband. I am working my way back into shape after 3 brain surgeries in last 10 years, but was a runner prior. My sister is a runner now, but had to stop because TN flared up during exercise. She is a vegetarian, I am not. We are pretty different in almost all aspects, although both of us have chemistry degrees and went to the same college.
Just lucky, I guess! I gave her my copy of Striking Back, so I guess I am good for something!
Mollycule
Well Molly, if you were a runner we can assume you didn't get this from obesity or syndrome X? Unless, of course, you went to pot very quickly for some reason! An interesting theory though, that it might be because you both studied chemistry. I studied it at secondary school (high school if you are in US!), but this seems like a steep punishment for some very elementary study.
Nope, damned if I know how we all got here. That would certainly make another interesting poll - to find out how many lifestyle aspects sufferers shared. Maybe we all ate too much damn aspartame....
mollycule said:
Lifestyle not same, we do each have two kids. I still have same husband. I am working my way back into shape after 3 brain surgeries in last 10 years, but was a runner prior. My sister is a runner now, but had to stop because TN flared up during exercise. She is a vegetarian, I am not. We are pretty different in almost all aspects, although both of us have chemistry degrees and went to the same college.
Just lucky, I guess! I gave her my copy of Striking Back, so I guess I am good for something!
Mollycule
I am also a runner, Spin instructor, and vegetarian and got TN in my 40s (out of pain now since my MVD last year). No one else in my family has ever had TN although Dr. Casey told me that most likely some great aunt somewhere had it maybe years back and thought it was her teeth. I think there very well may be a genetic piece to all this. It may simply be how your arteries/veins are mapped out in your brain area or something with the genetics of your myelin that it breaks down much more easily than others that do not have the genetic flaw. I have read that in research on cadavers, compressions to the trigeminal nerve are found much more frequently than the disease afflicts people. According to this research only a small percentage of people with a compression to the trigeminal nerve actually experience the shock pain. The hypothesis is that the myelin makeup of the TN patients is different so it actually breaks down to expose the nerve. I think I had read this on the TN research foundation website regarding their genetic research.
Hi Mybell, interesting that you are a vegetarian. I am currently receiving B12 shots in an attempt to improve (dare I say cure?) my TN. There is old research, going back to at least the fifties, that implicates B12 deficiency in TN. Vegetarians are one of the at risk groups. I wonder if there is a genetic predisposition towards TN or if the genetic predisposition is actually that TN sufferers need more B12, or we have weak uptake somewhere in our bodies, and that leads to a breakdown of the myelin sheath. That would certainly explain why many ordinary people have compressions and no TN. B12 might very well be the answer...
mybell said:
I am also a runner, Spin instructor, and vegetarian and got TN in my 40s (out of pain now since my MVD last year). No one else in my family has ever had TN although Dr. Casey told me that most likely some great aunt somewhere had it maybe years back and thought it was her teeth. I think there very well may be a genetic piece to all this. It may simply be how your arteries/veins are mapped out in your brain area or something with the genetics of your myelin that it breaks down much more easily than others that do not have the genetic flaw. I have read that in research on cadavers, compressions to the trigeminal nerve are found much more frequently than the disease afflicts people. According to this research only a small percentage of people with a compression to the trigeminal nerve actually experience the shock pain. The hypothesis is that the myelin makeup of the TN patients is different so it actually breaks down to expose the nerve. I think I had read this on the TN research foundation website regarding their genetic research.
I sort of thought that too but I do take supplements plus eat eggs and use nutritional yeast. I had my regular Dr check my B12 levels and she said that they were actually a little too high and that was probably contributing to some of my tiredness along with the meds. I haven't cut back though on my supplements as I'd rather have a bit too much B12 than too little. I hope that the awesome scientists that are working now to unlock the genetic mystery surrounding TN, make some great findings soon. I would hate to leave this genetic curse to my children or grandchildren.
Today, I received a very interesting letter from my aunt in the UK.
(I left the UK 30 years ago)
Sheād written to me previously and asked why I havenāt kept in touch lately, I told her that I was suffering from TN, and my life was governed by how I felt from day to day,I suggested she look it up on the net, because it was too hard to explain to someone who doesnāt know what it is, anyway, in the latest letter today, she blew me away when she announced that my uncle (my fatherās younger brother) her husband, HAD suffered from TN himself, but it was now gone???
I didnāt get much more info from her, but she said he keeps Tegretol on hand incase he has pain, but as heās got older the pain has gone, that was the interesting bitā¦
Sssssoooooo all we have to do is wait??? Heās in his 80ās ???
Hi, Iām the only one that has ATN/TN in my family. My mother and sister suffer from migraines, Iāve always wondered if there is some kind of connection or gene issue.
If I recall correctly 5% of TN is inherited. My paternal GM is reputed to have suffered. But as she died over 70 yrs ago, I cannot verify.
Too much B12? That's a first! Doctors do have some funny and downright dangerous ideas about B12. God knows where they pick them up. You're quite right not to cut back on your supplements. Unlike some vitamins which ARE dangerous in excess, B12 is simply passed out in urine. It's one of the more harmless vits out there. God help you if you don't have enough though.
I really hope the scientists do find something. Anything, frankly. Although I would like a cure, even something that just stopped it degenerating would be bloody marvellous.
mybell said:
I sort of thought that too but I do take supplements plus eat eggs and use nutritional yeast. I had my regular Dr check my B12 levels and she said that they were actually a little too high and that was probably contributing to some of my tiredness along with the meds. I havenāt cut back though on my supplements as Iād rather have a bit too much B12 than too little. I hope that the awesome scientists that are working now to unlock the genetic mystery surrounding TN, make some great findings soon. I would hate to leave this genetic curse to my children or grandchildren.
Holy hell, Anne, that's epic news! If we can all resist the call of the Suicide Disease till we are 80 we might get a reprieve. Where do I sign up? Seriously though, that is pretty cool. Gives you something to look forward to, although I wouldn't recommend building your life around it - that really is wishing it away!
I can't remember, did we put you down as having no relatives with TN? If so I'll have to change that. Let me know. But it does also make you wonder how many of us have relatives tucked away we don't know about who might have had TN. It occurred to me yesterday that I had a cousin who committed suicide some years back. She would have been in her forties, I think. I don't know why she did it, but it does make you wonder if something like TN was behind it. God, that's cheerful, isn't it? Let's stick with the reprieve at 80...
anne morris said:
Today, I received a very interesting letter from my aunt in the UK. (I left the UK 30 years ago) She'd written to me previously and asked why I haven't kept in touch lately, I told her that I was suffering from TN, and my life was governed by how I felt from day to day,I suggested she look it up on the net, because it was too hard to explain to someone who doesn't know what it is, anyway, in the latest letter today, she blew me away when she announced that my uncle (my father's younger brother) her husband, HAD suffered from TN himself, but it was now gone??? I didn't get much more info from her, but she said he keeps Tegretol on hand incase he has pain, but as he's got older the pain has gone, that was the interesting bit...... Sssssoooooo all we have to do is wait????? He's in his 80's ?????
Not a huge stretch there, Erica, I'd think. Certainly Lamotrigine is used to treat migraines and treat TN pain. Or are we being too Seven Steps to Kevin Bacon here?
Erica328 said:
Hi, Iām the only one that has ATN/TN in my family. My mother and sister suffer from migraines, Iāve always wondered if there is some kind of connection or gene issue.