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Migraine is more than a headache – a rethink offers hope

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Re: Migraine is more than a headache – a rethink offers hope

#61

Post by fahrnfahrnfahrn »

tim333 wrote: post #59
FloorEgg wrote: post #49

I got my first migraine in my early teens. I was over at a friend's house and we were playing in the basement on a summer day, then went outside where the sun reflected off a window into my eyes. It would start with a shimmering pattern obstructing my vision where the bright light was, which would grow into a c shape and get bigger until it surrounded my vision and then faded away. About 15 min after the shimmering p…

I sometimes get shimmering patterns which I think they call visual migraine or https://en.wikipedia.org/wiki/Scintillating_scotoma but thankfully mine don't go on to migraine proper. They often seem set of by a bright light outside the center of vision like I'm reading a book with sunlight coming in from 45 degrees.

I've had fewer than a dozen episodes starting last year. Luckily, like you, I have scintillating scotoma without headache. I haven't noticed a trigger--they're just spontaneous. A couple of years before, I had a couple of episodes of binocular diplopia (https://www.yalemedicine.org/conditions/double-vision). Dunno if they're related.

Re: Migraine is more than a headache – a rethink offers hope

#62

Post by tclancy »

FloorEgg wrote: post #49

I got my first migraine in my early teens. I was over at a friend's house and we were playing in the basement on a summer day, then went outside where the sun reflected off a window into my eyes. It would start with a shimmering pattern obstructing my vision where the bright light was, which would grow into a c shape and get bigger until it surrounded my vision and then faded away. About 15 min after the shimmering p…

That feels pretty similar to my story. I always put it down to some kind of puberty changes.

Re: Migraine is more than a headache – a rethink offers hope

#63

Post by orthecreedence »

rconti wrote: post #32
orthecreedence wrote: post #22

Earlier quoted context omitted.

He's saying that he used to just view the pain of migraines as a disability, but now realizes that there are other components to migraines besides pain that cause disability (such as brain fog, emotional instability, blindness, etc)

Thank you, that makes more sense now; with that explanation I can re-read the original quotes.

I think "travels with" is an odd phrasing that distracts from the meaning of the sentence. It took me a while to parse as well.

Re: Migraine is more than a headache – a rethink offers hope

#64

Post by bpye »

doubled112 wrote: post #37
soupfordummies wrote: post #18

Earlier quoted context omitted.

my mom used to get these and said it was like "seeing dots" anecdotally of course too, but is it more common for women? I've only ever known 3-4 people that got these kinds of migraines and they were all women.

I happen to be a man who gets migraines with aura, but I do think they’re more common in women. They started when I was 14. I get visual issues like tunnel vision and sparklies, but I also get numbness in my face and extremities, confuse my words (right parts of speech, not what I intend to say), and often vomit. Needless to say, the first one scared the crap out of my mother and I. I may or may not have a headache w…

> I get visual issues like tunnel vision and sparklies, but I also get numbness in my face and extremities, confuse my words (right parts of speech, not what I intend to say), and often vomit.

I’ve experienced migraines for years, but last year had my first instance that messed with speech. It certainly unsettled the friend I was with at the time.

Re: Migraine is more than a headache – a rethink offers hope

#65

Post by e40 »

FloorEgg wrote: post #49

I got my first migraine in my early teens. I was over at a friend's house and we were playing in the basement on a summer day, then went outside where the sun reflected off a window into my eyes. It would start with a shimmering pattern obstructing my vision where the bright light was, which would grow into a c shape and get bigger until it surrounded my vision and then faded away. About 15 min after the shimmering p…

Yep, I realized mine were caused by looking out the window while I brushed my teeth in the morning. One day it was really bright outside and really dark inside and the migraine started almost immediately. More than a year and I keep the blinds drawn while I'm in the bathroom in the morning and not a single migraine!

Re: Migraine is more than a headache – a rethink offers hope

#66

Post by crazygringo »

orthecreedence wrote: post #19

I've thought for a long time now that everyone has a migraine all the time, but migraine sufferers temporarily lack the brain's ability to ignore the ever-present pain. In other words, the migraine isn't the addition of pain, but the absense of a pain relief mechanism. I have no sources to back this up, other than personal observation.

What personal observation makes you think everybody has a migraine all the time?

Re: Migraine is more than a headache – a rethink offers hope

#67

Post by jcAUS »

long-time listener, first-time caller on HN. I've had migraines since I was a teen. Full blackout vision, then debilitating headache for 48 hours. About 18months ago I cut out food containing thickening agents (Xantham gum aka 415, et al). Have only had a migraine since then when I've had food containing these (which seems to be an increasing number of foods). I don't suggest it's a cure all, but worth trying for others out there. I've sat in job interviews, my wedding, kids' events dreading having one occur.

Re: Migraine is more than a headache – a rethink offers hope

#68

Post by dumbfounder »

I have been diagnosed with vestibular migraines. No pain, just dizziness and brain fog and vision issues (feels like my eyes don’t point in the same direction). I also have a doctor that says I have symptoms of mold exposure (lots of correlative testing and also house testing and remediation). I have also been diagnosed with temporal lobe epilepsy by my neurologist, but my mold doctor says that is consistent with mold exposure. I also have a vestibular degradation, one side of my balance center is damaged. I think all of it is related and linked by inflammation. I do think that mold is part of the story, but definitely not all of it. Anti seizure medication helps a lot. Ubrelvy (a gepants) also helps a lot. Getting the right kind of sleep and exercise and staying hydrated also all help. I am nearly 50 and this a new thing that has happened in the last 2-3 years. Was not fun to go through this on the tail end of running a startup. The brain fog was debilitating. I am now 80% better with meds (and a shit ton of supplements) but still on the journey to figure out how to get back to normal and off all the meds. I do think it is inflammation related but it could be one of a zillion things, or a combination of many.

Re: Migraine is more than a headache – a rethink offers hope

#69

Post by xattt »

tclancy wrote: post #62
FloorEgg wrote: post #49

I got my first migraine in my early teens. I was over at a friend's house and we were playing in the basement on a summer day, then went outside where the sun reflected off a window into my eyes. It would start with a shimmering pattern obstructing my vision where the bright light was, which would grow into a c shape and get bigger until it surrounded my vision and then faded away. About 15 min after the shimmering p…

That feels pretty similar to my story. I always put it down to some kind of puberty changes.

Yes! At least some migraines are caused by whatever second-order effect there is from hormonal changes.

Re: Migraine is more than a headache – a rethink offers hope

#70

Post by caitlinface »

I've suffered from migraines all my life. It worsened as I've gotten older. One day long attacks turned into three day long attacks. Then turned into five day long attacks. I've taken various preventatives and abortives over the years to varying success. It runs in my family so I never thought to see a neurologist for them. A couple years ago I had a bad string of them and my medicine wasn't really touching it, so I finally decided to see a headache specialist. The doctor very quickly got me started one of these anti-CGRP medications.

Almost immediately, I dropped to 0-1 attacks a month, and when they do happen they are both less painful and my other medicine knocks them out fast.

Literally life changing.

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