Does anyone else in your family have TN - or are you the only one?


On meds and two migraines a month? - that’s bad. I don’t suppose any of the ‘experts’ has ever given you the first clue about what might be causing them? I imagine you know your triggers well by now? They always say there’s food triggers for migraine (the usual suspects: cheese, wine, chocolate) but I’ve never felt triggered by food at all. Caffeine makes me feel really bad, but it tends to help migraines/headaches, even if I do shake like a leaf with it. Alcohol is the only thing that will trigger a headache in me, but I’d have to get drunk and dehydrated for it to turn into a migraine, so I don’t really think it’s the alcohol, per se, but rather what it does to you physiologically.

How about you - do you have food triggers or are yours all physically based like mine?


My biggest triggers are weather, or, really, changes in barometric pressure. Changes in any pressure really, I’ve had to give up travel by airplane because of it. The pressurization of the airplane makes me feel like my head is coming off.

Then there’s food. I have a long list of foods that are EVIL. Interestingly enough, not ages cheeses so much as moldy cheeses like blue cheese. No alcohol, ever. Worst migraine of my life was from half a wine cooler! I can drink one light ale once in a blue moon but usually don’t bother, the risk is too high. Nothing fermented. No vinegars. No olives. No capers. No tree nuts. Nothing in the chili family, the oil is the problem.

As I get older I get more sensitive, which my neurologist agrees is a trend she sees with her migraine patients. I’ve been having more and more trouble with cross-contamination. For example, if I order a pizza I have to make sure the person making it changes their gloves because if they made a pizza with hot peppers right before mine the oil with cross-contaminate my order and give me a migraine. A food triggered migraine lasts three days with the second day being the worst. It’s like clockwork.

Flashing lights can be an issues but usually in combination with already being semi-triggered. I did stop going to movies in the theater, tho. The dark room with projection lights bothers me. I wear night driving glasses. I stay over hydrated at all times and drink at least 4 liters of liquid at day. I love caffeine and use it as medication for migraines. I drink Mt. Dew all day long and it helps me enormously. No doubt it’s a combination of constricting the blood vessels and helping metabolize meds faster. That I discovered on my own, originally I avoided caffeine but then the book Migraine by Olive Sachs (you should read it) advised on using caffeine as a medication for migraines so I gave it whirl. One of the best things I ever did!

The other thing that made a huge difference for me was stabilizing my sleep/wake pattern. Getting up at the same time every day really helped. And I kept a sleep journal in tandem with a migraine journal off and on for years and discovered if I get pulled from sleep between 4am and 8am I will get a migraine. So I changed my job to avoid that time frame and my migraines immediately improved.

Written out like this it seems like a great deal and I guess it is but it’s a way of life. It’s like having deadly food allergy, you just get used to checking for that thing everywhere, all the time.


No one else in my family has it either.


That’s fascinating stuff. Reading your migraine ‘profile’ is like looking at mine, but more extreme. I realised after I read this that I’d been a bit disingenuous with the alcohol thing since I can’t drink red wine at all (I immediately feel like chucking it back up). I used to be able to drink white but now, older, nope. I have experienced exactly what your doc says about the age thing. I used to be able to stomach coffee and tea (I was a tea drinker right up till my 30s) and now my body just can’t handle it. The usual nausea, hyperactivity and panic attacks! I even have some similarities on the pressure thing. Even as a kid I couldn’t tolerate hills and the like that made my ears pop. It used to make me carsick (you’re probably seeing a pattern here with the nausea - I only realised when I got TN that I had been having ‘stomach migraines’ as a kid).

The weather thing affects me too, I suspect, but because I live in Scotland it’s not that impactful! I know when I lived in London and Manchester I used to suffer terribly In the heat, and hot summers were a nightmare. Not so much because of the heat itself, but because bright sun used to give me headaches/migraines if I was out in it for any length of time. I took up wearing sunglasses in my 30s because of it, even although I don’t like them. Oddly enough, I don’t use them as much nowadays, but that’s probably because Scottish sun is not such a threat!

I hate olives, don’t much like nuts and rarely eat them (except for almonds and pistachios, but I only eat them as toppings, not as a snack!) and chilli irritates my gut so much it isn’t worth it. The only one of them though that I’ve been aware of as being headache-inducing is the nuts. Maybe because I never touch the other two! I do like peanut butter ice cream and chocolate, but I suspect there’s not a lot of actual nuts in there! I never eat peanuts as a snack as they make me feel a bit poorly and - you guessed it - sick.

I’m not aware of ever having had a food-triggered migraine though. Food has certainly added to them, but never set one off. The one exception is the alcohol. The one I had c1990 was alcohol-induced - probably cider or beer, neither of which my gut can tolerate very well. I did have a very similar but lesser migraine in the early 2000s which was induced by stress/lack of sleep and it was exactly like a hangover. I remember that one because I was forced to go on a ‘ramble’ on an Orkney island, and despite the name ramble the A-type who was leading it took us across the land at a Navy Seal clip as if he was out to win a race. I swore that day to never again allow my fear of ‘letting someone down’ (we had promised to give someone a lift who wanted to do the walk) drive me into attempting to function while sick. I can remember even the overcast Orkney day felt as if it was strobing right into my brain and every time I had to move my eyeballs it was like the sockets were lined with sandpaper - my neck had stopped functioning at all!

I know where you’re coming form with the duration of your migraines too. Although mine never come from food, I realise talking to you that, yes, that’s partly because I avoid irritant foods, although I always think about them from my gut’s viewpoint, probably because nausea is my most feared and uncoped with symptom (I’m afraid of vomiting!). My 6 week migraine courtesy of Lamotrigine was my longest, but once one gets a grip it can last the best part of a week. Mines tend to be horrible lingering things. They can take a day or two to come to fruition, and sometimes I’m lucky they just pass as headaches and never hit their zenith, but sometimes they claw into my brain and just sit there getting worse, no matter what I throw at them. When they do that you have to just quit simple reading or playing Candy Crush, sometimes even watching films or TV is too much. I usually just sit on the sofa with aforementioned hot wheat bag on my neck and massaging cooling sticks into my temples and avoiding even going to pee because the slightest movement feels like a roll of particularly bad seasickness!

And, of course, you are 100% right about the sleep, but I feel so ashamed of my freakish sleeping patterns I don’t even want to discuss it. I don’t know if it’s depression or what, but ever since I split form my partner I’ve had the most hellish time with sleep, and of course, the drugs make it worse - as does poor winter light. I get insomnia coupled with not being able to get out of bed when I do sleep. Subsequently I miss daytime and live like an owl. At the moment an owl with a permanent headache, which is all my own fault, I know, I just seem unable to stop it. And we’ll leave it right there, because I just despair at it.

I will absolutely check out Sach’s book, thanks for the rec’. It’s been fascinating talking to someone with full-blown migraine and seeing so many parallels. It’s a falling of mine that I accept too much of this stuff as ‘normal’ and don’t ever try to get help with it. I have to say in my defence though that having migraines is about as endearing as being depressed. As you doubtless know yourself, people think you mean you have a headache and a couple of painkillers will shift it (I wish), and being depressed means you’re a bit down. Even doctors think like this so I’ve found it’s better to just shut up and deal with it myself. Not always useful though!


Thanks Megara! I’ll add you in as a no.


Woman – sounds like you still get abdominal migraines! Which are awful-awful-awful, I hate it when throwing up makes you feel worse. And speaking of doing that, I’ve been known to tell people who claim migraine that unless they’ve thrown up from the pain (and other issues) I didn’t want to hear the word migraine from them again.

A few interesting notes for you about food:

Peanuts aren’t nuts! They’re in the legume (pea) family and therefore should be “safe” for a snack. If they give you problems try to be aware of other peas you eat, like chickpeas and soy beans. It seems like those things are in everything, you could be “priming the pump” for a migraine by eating foods with hidden peas in them. It may not be enough to launch a migraine but it might set you up for one when the next trigger happens along.

Almonds aren’t nuts! They’re in the peach family and therefore should also be a “safe” snack.

As I’ve gotten older I’ve also noticed that if food doesn’t taste good to me immediately I shouldn’t eat it. It doesn’t have to actively repel me, although I’ve had that happen, but even if it’s just kinda vaguely negative, even when it’s something I usually like, I should stop. Often times this is a sign of accidentally cross-contamination. Now, is this because I’m more sensitive to the food trigger? Or is this because I’ve wised up over the years and can tell a food trigger like it’s a hair trigger? I don’t know. What I do know is that it’s smarter to listen to your instincts than to dismiss them. No matter how crazy it seems, if you feel like it’s wrong than it is!

There’s a great song lyric “…and don’t out smart your common sense.” that I try to remember. As an example of this, I grew up eating and love a USA snack cracker called Cheez-Its. I could eat a whole box! About two years ago they started tasting kinda not exactly right to me but not enough for me to stop eating them even though common sense said there was something wrong my long history with the food and love it had me still snacking. I ignored it several times and ended up with migraines. I finally got around to reading the ingredients again and discovered they had changed. I can’t have them any longer. Had I listened to my common sense I would have saved myself a huge amount of grief.

Chronic conditions are a pain! Dealing with them. Explaining them. Not dealing with them… the whole thing makes me kinda tired, actually, so I get it when you say you don’t want to deal with it or try to deal with it yourself. The trick is just don’t give up! You only get one life.


Yeah, the I’m-late-for-my-lunch headache is somehow a migraine. What’s that about? I can’t imagine for one instant why anyone would want to lay claim to migraines. As I mentioned to you earlier, I don’t really consider myself a migraine sufferer even although I patently do get them. It wasn’t until the neurologist classed me as one (unasked!) that I finally considered it. I was mad at her for ages afterwards though, because everywhere I went all the docs were saying things like “I see you suffer from chronic headache”, “oh that’s bound to happen since you get migraines” - those kind of remarks. I’d come out of surgeries storming to my partner “I do not suffer from migraines” But it was the 6 week Lamotrigine ‘headache’ that finally beat me and I realised she was right and I wasn’t doing myself any favours by denying it. But although I accept my badge of (dis)honour nowadays I still don’t think of myself as a true migraine sufferer. As far as I’m concerned that’s the person who gets flashing lights and auras and has to lie in a darkened room, and while I did have one headache that was a classic lights, auras and immobility migraine, I still think the ones I get ‘normally’ are poor man’s migraines, comparatively speaking. Maybe it’s because I did have that classic one that I think I’m damn lucky to get the ones I get!

If I’m careful to avoid the obvious triggers, I don’t get them that often. I think most sufferers learn to cope like that, otherwise you’d have a splitting headache 24/7. My only real difficulty with them is from other people, when I can’t control my environment. My worst nightmare is being trapped on a long(ish - an hour will do it) bus journey with a heavy scent wearer. I can say, hand on heart, that that is the simplest trigger I have, no extra embellishments needed. If I’m really unlucky and have the starts of a headache beforehand then scent will be enough to push it over the edge. I’ve been known to move seats three times on a bus, and risk people thinking I’m bonkers, just to get away from pain-inducing smells!

I know peanuts are technically considered a legume, I’ve always thought that’s why they make me feel a bit poorly - me and legumes don’t get on. I’ve tried many times to eat vegetarian diets but the lentils and beans crucify me. I didn’t, however, know almonds are seeds, not nuts. that explains why they are my favourite nut and they never disagree with me! It really p*sses me off when people bang on about eating “healthy” handfuls of nuts as snacks. I find them a real chore and they do not sit well in my stomach at all. Peanuts are my least favourite nut. I’ll go hungry rather than eat more than a few of them, yet I do love (sweet!) peanut butter flavoured things!

And it’s really weird that you talk about things not tasting good on first encounter being like a sign. Only in the last couple of days I was thinking the very same thing, from a different angle. Since I’ve left my partner I’ve stopped eating some foods that were a staple of my life before, like bananas, eggs and grapes, and I was thinking that when I was a small child I wouldn’t touch bananas or eggs; I found them repulsive and ‘slimy’. I just got in the habit of eating them because my partner did the cooking. It makes you wonder if my first instinct as a child wasn’t the right one! I’ve no idea why I don’t eat grapes though, I do like them, but perhaps it’s that wine problem, just unfermented!

It’s been great talking to you, thank you. Sometimes you feel like a freak of nature with all these weird niggly little bits of nonsense. It’s great to see a similar pattern reflected back at you from someone else. At least that way you know a) you’re not some neurotic crazy woman and b) you’re not alone!


Hi again. I am back here because I suspect my younger sister (25 years old) may also have TN. She was explaining some symptoms to me and I said that sounds exactly like TN. Her friend who is a nurse agreed. I think she needs to see a doctor about it. I also got my second MRI and there was no change in lesions, which is apparently a requirement for MS diagnosis, so I have a bundle of symptoms and no diagnosis. Such is life!


Thanks, Jocelyn, I’m both sorry and glad you had no change in lesions. That’s a great thing, because who wants MS, right? But of course also annoying for you - just keep on looking. Eventually you’re bound to hit pay-dirt - I hope! Not sure I can add your sis’ in yet as she hasn’t had a diagnosis, but I’ve added her as a maybe. Let me know if she becomes a ‘yes’, but here’s hoping she doesn’t!

The current tally as of 25/5/18 8 people out of 23 with one other relative with TN, and one of these with multiple (female) relatives, all with TN. (However, two of the people with a positive family history of TN have unverified anecdotal evidence of ancestors with TN and therefore it is hearsay only). We also have one other with a sister who she suspects may have the condition, but it hasn’t been diagnosed. It’s not near half any longer (more like a third) but it’s still higher than it would be in a normal population, I think.


My grandmother had TN back in those days they could barely do anything . I am 62 years old as point of reference
My Best


Thanks Joanne - I’ll add you to the stats!


Stats as of 25th September 2018 - 9 people out of 27 with one other relative with TN, and one of these with multiple (female) relatives, all with TN. (However, two of the people with a positive family history of TN have unverified anecdotal evidence of ancestors with TN and therefore it is hearsay only). We also have one other with a sister who she suspects may have the condition, but it hasn’t been diagnosed. It’s not near half any longer (it’s exactly a third now) but it’s still higher than it would be in a normal population, I think.


I’m the only one with ATN that I know of, however, migraines run right up my family tree on my father’s side … me, my brother, my dad, my paternal grandmother, at least one cousin on that side, my paternal great-grandma… and the neuro thinks there’s a connection between neurologically complicated migraines and TN/ATN.


38 year old male here with TN1 and TN2. Nobody in my family has had, or even heard of TN (lucky them).


I have actually done a lot of research about this. I am the fifth member of my family with this wretched pain. While it is rare for it to be hereditary there are many of us out there and there is a lot of research being done into this right now. I participated in a DNA study last year with Yale and another one with the University of Toronto a few years ago. I have gotten to know one Dr at the U of T and the research on this subject is incredibly interesting.
I started a facebook page about this a couple of years ago and have about 60 members. It has been amazing to connect with all these people who suffer and have it in their family. Here are some things I have learnt about the genetic factors of Familial TN:
-it runs in the maternal side of the family
-affects more women, but there is higher percentage of male sufferers with hereditary TN (my brother is one of them)
-it often skips whole generations
-with each new generation affected it begins at a younger and younger age
-Familial is more often Bilateral, affecting multiple branches
-Familial tends to affect other facial nerves–GPN, GN, ON, etc.
-Familial includes a whole host of other neurological problems with other family members-MS, Fibro, other Neuropathy, Migraine, Stroke, etc.

The oddest story I have heard is one lady whose mother and father both have familial TN. I have another lady with 8 other family members affected.

Lucky us to be soooo rare :slight_smile:


People with familial TN tend to have a whole host of other neurological diseases and disorders in their family


My family is now up to five members with Familial TN. Since my first reply I have researched this a lot and it is actually the leading area of study with TN right now. Yale just completed a huge DNA study. In my many years of speaking with other members I have come to understand that it isn’t a leap at all. We are the rarest of the rare but there are just too many factors for it to be coincidental at this point for me and my family.


You definitely have the migraine gene, Azurelle! Can’t add you as a genetic TN sufferer though since you don’t have any fellow-sufferers in your relatives (got to keep scientific - hah!), so I’ve added you in as a ‘not’, but I think the chances are strong that, yes, it is genetic in your family but for some reason only you have set off the environmental trigger.


Thanks, Haach, I’ll add you to the stats. And weren’t you lucky to get both at once!


Hi Jane, yes, even this highly unscientific poll is showing about a 30% incidence of a genetic connection - I’m pretty sure those are high(er) odds. I find the idea of it being in your DNA deeply depressing because it seems so fatalistic, but that said, with most ‘genetic’ conditions there is usually a trigger to cause gene expression. I have a personal theory that the ‘modern diet’ is the trigger because my own came on after an odd eating history/illness that affected nutritional absorption, but nutrition is a BIG field which means anything from a disordered gut microbiome to the use of preservatives or even that old favourite ‘stress’ could be the underlying issue.

Or none of the above! Some day they might be able to identify the issue but until then we’ll all just have to indulge in fascinating conjecture!