Aura migraine - does anyone experience these?

[Dustmaiden]

I’ve suffered with aura migraines since pregnant with my son, 18 years ago. My mum gets them too and occasionally so does my sister.

I’ve always put them down to being a hormonal thing as they started in pregnancy then after I’d always get them on the 3rd day of my period.

However, 18 months ago I had a uterine ablation and an iron infusion and haven’t had one since so thought that had ‘cured’ me.

To my absolute dismay (and panic as they scare the life out of me). I’ve just had one come on. Classic weird blind spot which turns into a flashing zig zag which arches across my vision which lasts around half hour then fades leaning me with a mild headache and weird, shaky spaced out feeling.

Of course, me having health anxiety im
now panicking why they would disappear for a year?

https://images.app.goo.gl/5CKndXZeYgQs2KDL8

Looks a bit like this

Yes, I have them.
They do come and go, sometimes because of endogenous things and sometimes because of triggers, eg having to work in a room with a dodgy light fitting, or weather.

I've had none since menopause, in case that gives you something to look forward to! They were horrendous when I was pregnant.

I get them. I think mine might be slightly hormone related but I've never spotted a pattern as distinct as yours. I get about 2 or 3 a year. My triggers seem to be hormones (more likely to get one when I'm on my period), stress and tiredness but the major thing for me is bright light. If I get a light right in my eyes, it can set a migraine off.
They are annoying and I hate how they make me feel headachy and nauseous but I don't think they are anything to worry about.

Hi, I get these. Rubbish, aren't they?!

Mine were always lined to my periods then suddenly got awful and near-continuous when my hormones went haywire in my 30s. They later improved when hrt ironed out some of the bigger hormonal fluctuations.

Hormones are a big trigger for me but, like most migraine sufferers, it's more of a cumulative thing. So one week I could skip sleep, have a glass of red wine and sit under a strobe light and have no problems, but just one of those same things could tip me over the edge on a different week.

In your situation I'd look at what, if anything, has changed and record it to see any patterns emerge.

I’ve always had them even now, long past menopause so don’t think it’s hormonal with me, not on HRT.

I have them. No more than 1-2 per year and up to 2/3 years without occasionally. Ever since I was 21 (now 47). Mine are not hormonal.

Thanks all, your replies have eased my panic a little.

You would think having them for almost 20 years would have eased the anguish over them but they still send me in a frenzy. I usually take to my bed but I’m at work today.

Have no idea why I’d get one today though as I’m mid cycle but at 50 who the heck knows what’s going on with my hormones!

useitorlose I hope to god they go after menopause but my mum has had them right up till now and she’s 80 😢

I had my first one when I was 41/42. They got more regular until it was about once every two months for the next 5 years, then they tailed off. Haven’t had one in about a year now.
I also get a flashing zig zag but mine is black and white and like an angular half rainbow. If I immediately stop what I’m doing, take painkillers and lie down for a couple of hours I can ward it off. If I try and power through, I can be unwell for days.

I'm glad you're a bit reassured. The panic itself could be a side effect of the migraine.

Weird anecdote that might be of interest to fellow sufferers: I hate most sweets but every so often I'd crave haribo, eat haribo, then get a migraine. I mentioned haribo was a trigger to a neurologist who said it was unlikely and most "triggers" are actually cravings caused by the early stage of the migraine. Sure enough, I started writing down every time I craved haribo and - regular as clockwork - a migraine would follow regardless of whether I had any or not. The same with bright lights, strong smells and loud background noise. They were not causing my migraines - they were things that only bothered me when I was in the very early stages of one. I now 'stop and drop' in a dark room if I notice any of these things and am in a position to do so and quite often manage to fend them off.

I've started suffering with them since having my baby. He's nearly three! Anyway it's only been since he was born I've had them aura. Can't make a link as to what causes them.

Verite1 I usually take to my bed when one strikes too but Sod’s law I was at work (only work part time as well, typical!). Over the worse part now but am home and drained so will jump in bed as soon as I can.

Mammillaria it’s weird how they leave you anxious. I do suffer from anxiety but the aura anxiety is a strange, out of control/confused type feeling, I really don’t like it at all.
It’s interesting that you mention the haribo/food thing. I don’t have a big appetite (mainly due to some digestive issues that I have) and usually won’t eat or have any cravings for food until at least 11am but this morning I woke up ravenous, felt like I could eat and eat and my tummy was rumbling as though I hadn’t eaten in days.

Yep. Mine are hormone linked though not that specific. They happen when my hormones are proper shifting, like ovulation or just before my period starts.

My aura is like a kaleidoscope. It's sometimes worse than the pain that follows.

If I take some painkillers just as a I get an aura it's managable, although sometimes still have to go to bed. And it wipes me out afterwards, proper super sleepy.

The big trigger (during the hormone changes) for me is changing light. Like on a mildly overcast day, or going in and out of shops on a bright day. The rapid change from light to dark.

chuffachuffchuff there must be some sort of hormonal connection for some of us. I didn’t have my dc until 32 and 35 and previous to that had never suffered from them, weirdly my mums also started when pregnant with me.
After my ds at 32 I didn’t have them then one day 2 and half years later I had a massive one….I knew instantly that I was pregnant again.
Maybe, somehow pregnancy has shifted something within your hormonal system? They are a strange phenomenon and I don’t believe they’ve been studied too often. Certainly not as much as regular migraines.

I get them with the clocks changing, lack of sleep, not eating enough, not having enough caffeine and stress

stackhead I often find the auras are worse than the headache which follows and sometimes I have no headache at all but always have the drained feeling, as though something has pulled the plug on my energy levels and they suddenly completely drain.

IDoNotMoisturise my husband started getting a few several,years back and found caffeine triggered his. He’s not had one since giving up coffee.

Yep I've been having them since I was 8. I remember watching tv and only seeing half of Richard Madeley's face one morning and freaked out

There can be many triggers. Covid infections can lead to a long term inability to regulate hormones as well which for some means daily or frequent migraines. My triggers are allergens like scented candles and botanicals. Hormones were always a thing and after Covid it's been a constant thing. I've been seeing a specialist and started medication which works well. Looking back I can't believe I went so long without medication. Even with the medication though, although the pain is gone I still have the other weird feelings that go along with it like you and others mentioned. I also get dizzy and generally feel awful. My auras are little light bursts and also persist even with meds.

I started getting them, once a month, when my DS was about 3. Stopped for a few years then returned when I was 46 ish. Now I'm on HRT they seem to have abated.

Horrible things, so weird and worrying. Okay if I'm at home and can get into bed, not so good if I'm out and have the car.

I get these and have done since I was 18/19 (early 40s now). They're awful! I don't get them that often thankfully but I've found taking the pink migraleve as soon as the initial blind spot phase starts, I can keep the worst of the zig zag lines at bay. I've never figured out the cause but my dad used to get them, normally when he got dazzled by something (the sun bouncing off a passing car for example) so I've wondered if they're hereditary.

@Dustmaiden Hi, I am a fellow sufferer.

Mine are 100% hormone related. Never had one until I had my dd18, about a year after she was born.

If I have one it’s always at period time. Then they just stopped happening, for ages which is great!!

I started hrt in February for early peri. All good. Then they changed me to the patch and bang - back again.

HRT specialist told me to stop patches immediately and go back to what I was on, apparently patch’s if you have previously or are having these migraines are blocking blood supply or something.

Stopped patches and not had another.

Try not to worry about them, I actually think it’s amazing my brain could develop such a pretty sequence of shapes and colours - weird most people’s are zigzags (as are mine with very vivid colours).

thought I should mention patches just incase your on them. My gp didn’t even know it was a risk!!

I’ve had them since my early twenties May get 2/3 a year, some years I get more some I get less.. But they always follow the same pattern, blind/blurred spot where I can’t focus followed by zig zags they pass ten mins later. Sometimes a dull headache and a an off feeling. But they’ve never got any worse. I feel like light changes sometimes trigger them.

Yes, first had one when first pregnant. Still get them now and then, have no idea what triggers them. I don’t get any headache, though, and if I can lie down quietly, or sit quietly with eyes closed, they disappear in 20-30 mi utes.

Dazzling lights trigger mine, could be a headlight or even reflection of lights on the pool at the swimming baths. It also happens if a florescent light in a shop is about to go and is flashing.
Awful dancing zig zags in one eye then a blind spot. Lasts about twenty minutes.
It really frightens me and I've been having these since I was 35ish. I'm 44 now.
Weirdly I no longer get a headache afterwards. Only had a headache the first couple of times this happened.
I have about 4 per year on average.

You have my sympathy OP, they are so awful. I have these regularly, starts with strange dizzy vision, vertigo, then I have pain in my hand, like my fingertips are in a vice, no headache, I usually lie down until it passes. Neurologist says due to hormonal changes, I was concerned it was due to my MS. I am hoping they will stop when I am through the menopause. Tried HRT helped for a while,then back with avengence. Good luck I hope you find something to help.