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Original poster

Aura migraines - anyone else get these?

47 replies

Sixmonthcruise · 13/02/2022 17:04

I’m 49 next month.
Never suffered from any kind of headache during my teens or twenties but started getting aura migraines when pregnant at 32 and then again when pregnant at 35. Then they eased off and about 10 years ago they started up again but they come almost always on the 1st, 2nd or 3rd day of my period so for me they must be hormonal. My mum had them virtually the same pattern and my sister occasionally gets them so must also be something running in my family.
They start off as a weird blind spot in my vision which then turns into a small bright blob which unfurls into a great big psychedelic zig zag which goes right across my vision. They still scare the crap out of me all these years later. Last about 20-30 minutes during which time I have to sit in a dark room as my vision is completely obscured. Weirdly, I often don’t get much of a headache with them but feel space out and weird after. If I do ever get a migraine it’s usually some other time in my cycle and usually stress related, these are definitely triggered by hormones but I just don’t know if it’s a rise or drop or if it’s oestrogen or progesterone or a combination of the two going haywire?
But they are getting more frequent. Used to be only 4-6 times a year but now seem to be every period.
I had a weird one on Friday (a day before my period) and it’s lasted on/off from 5am til 9am, never had that before but I did have my first iron infusion the day before (periods have given me anaemia) so not sure if that’s related.
Nothing yesterday but have just had one today (that’s the 2nd day of my period).
They leave me exhausted. I hate them.
GP not much help.
If they are hormonal and I kind of know when they will strike (and will probably get worse with age!), is there anything I can do or take to prevent them?
Any advice most welcome as I absolutely hate them, scare the heck out of me.

OP posts:

Photosymphysis · 13/02/2022 22:56

Just to add...

Yxzl · 13/02/2022 22:59

The visual disturbance is called a scintillating scotoma and can be part of optic migraines, usually without a headache, or part of an aura preceding a migraine. I've suffered bad migraines with aura since childhood and now only really get optic migraines. The biggest problem I have with them is obviously not being able to drive when they start.

Your change in migraine type could well be down to hormonal changes due to menopause - make sure to mention it to your gp as I don't think hrt is recommended if you suffer with aura migraines.

Tempusfudgeit · 13/02/2022 23:00

Mine were exactly like that from 18-39. Then I got the added fun of numbness down one arm, difficulty swallowing and difficulty speaking. Absolutely terrifying.

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JustGotToKeepOnKeepingOn · 13/02/2022 23:18

My migraines are definitely triggered by hormones. I tried all the drugs already mentioned on this thread but nothing worked until I went onto HRT. Haven't had a migraine for best part of a year now.

mummabubs · 13/02/2022 23:23

I have only had one, a few months ago but I had the zig zag lines and felt like I was blind for about an hour. I was walking the dog near to home with my baby strapped to me when it came on suddenly. No headache but couldn't see, I was really scared 😔

OldWivesTale · 13/02/2022 23:41

Yes, I had my first one when I was about 40. I was so scared, I thought I was having a stroke. I've had about 8 or 9 since then. They are very weird and quite scary.

CandyLeBonBon · 13/02/2022 23:44

I had one tonight at around the very time you posted your OP @Sixmonthcruise!

I used to get them a lit. Tonight's wax the first in a while!

RobertSmithsLipstick · 13/02/2022 23:47

I used to get them.
The aura meant that I had roughly half an hour to get to safety before the onslaught of all the even more terrible stuff started.

Thunderface · 13/02/2022 23:51

I get them very occasionally, very like you describe. I don't really get pain with them but sometimes nausea.
I recently returned to work after being a SAHM and I had a visual migraine at work 2 weeks ago.
I wasn't sure what to do. I couldn't safely drive home. I work in an office alone so I sat for ages with my eyes closed til it passed. Luckily it wasn't a very bad one.
How do you other sufferers deal with it at work?

XenoBitch · 13/02/2022 23:52

I get them too. They never go on to progress to a headache.. always just end up blind on one side.

neverdidnt · 13/02/2022 23:53

I get them a lot, just the same as you OP. I didn’t think sumatriptan worked for the aura though, only the headache..? I might be wrong!

RobertSmithsLipstick · 13/02/2022 23:54

I only get the visual disturbances now, but they are really bad, and can last up to an hour or so.
I have to stop what I'm doing because I can't see a thing!

blyn72 · 13/02/2022 23:57

I used to when I was young and more regularly when on the pill; later aged 50 when I was perimenopausal and went on HRT for a while. When I stopped HRT the migraines stopped.

I sympathise with you, they are horrible.

RobertSmithsLipstick · 13/02/2022 23:58

Mine got much worse as the menopause loomed.

ArcOfTheCello · 14/02/2022 00:01

Another one here the same as the OP describes. I find caffeine works for me, so as the aura comes on I have a cup of strong coffee and if possible rest up somewhere and it usually passes fairly quickly. If I can't get the coffee, it can develop to a headache but weirdly I don't find that too unbearable, just a bit annoying.

Namechange600 · 14/02/2022 00:02

Yes had my first age 24 and then have them every couple of years exactly as you describe OP

NewYearEveryYear · 14/02/2022 00:03

I get weird migraines too..similar to yours but not quite the same.

Usually a day ahead of my period, it starts with a tingling sensation down the right hand side of my face and up into my scalp, then bright sparkles in my vision, then sometimes dizziness, then a two day 'hangover'.

Guess what I rarely if ever get... A headache.

I had a rolling migraine from Feb to June last year, mainly the symptoms above, but with the odd trip to A&E for being so dizzy I puked, and for slurring my speech - I saw a neurologist who ran an MRI and saw tiny lesions in the frontal lobe of my brain (apparently very common in this type of migraine), but until that point I truly through I was dying ... I couldn't think of anything other than a brain tumor or a series of mild strokes that'd make me feel that weird for so long.

Just knowing what it is is a great comfort. I still get the tingles and the sparkles most months

Verite1 · 14/02/2022 01:06

I got my first one aged 41. At first, a couple of times a year, but then became more frequent. I was totally freaked out at first. Mine have a geometric jagged half rainbow in black and white. Every time. I put description into Google and that’s how I discovered it was an aural migraine. I presume due to peri menopause.

Allaboutyou222 · 14/02/2022 06:18

I get them occasionally. Sometimes with headache. Or sometimes just the headache. I know one is coming because I get a raging thirst and crave fruity, sugary stuff. It’s odd.

Sumatriptan is the only thing to shift the migraine.

Fangdrew · 14/02/2022 06:25

Yes, I had my first ophthalmic migraine in the first trimester of my second pregnancy. Rippling waves across my vision, affecting my entire visual field so it was really hard to see. Went on to have at least a dozen, most without a headache but sometimes the aura would be followed by a really bad one. It was really weird and was pretty disturbed by it especially as I’ve got no history of either migraines or any visual problems.

This was peak pandemic so couldn’t access a GP but the on call specsavers optician was helpful in offering a diagnosis. They stopped when I got to around 20 weeks and touch wood over not had another.

StemBelle · 14/02/2022 09:37

I have had exactly as you describe for the last 15 years and I still find them scary! When I first got them, I had a bout of them every day for three weeks and ended up in hospital thinking I was having a stroke, but turned out to be migraine. After that, one a year, with the first sign being a weird visual shift where everything looks too clear and crisp, and then the rainbow kaeldescope starts in my vision and gets bigger. I take a sumatriptan as soon as I feel the visual shift and sometimes it catches it quick enough and sometimes it doesn't. Always need to get to a bed after sumatriptan, though, as they knock me out!
This last few weeks my migraines have come back every day but have changed to having vertigo with them. It's been total hell. Doctor has put me on propanolol which is slowly starting to work.

Beepositive9 · 26/04/2022 11:54

@Sixmonthcruise omg you have described exactly what I am experiencing daily.
I'm 32 and currently 35 weeks pregnant. I've had the aura everyday now for about 4 weeks, sometimes a few times a day. You basically loose 40+ mins of your day waiting for it to pass.
I've phoned my doctor multiple times and they've said they can't do anything other than recommend paracetamol. I don't want to take that as I am not in pain.
I would probably describe brain fog as being the other symptom and I also sometimes get what @OhFuckBloodyHell said where I'm really hungry afterwards!
I got told to get my eyes tested and they were fine.
They started when I started taking iron tablets but the doctor said that is a coincidence.
I did suffer from these when I was 18/19 and said what others have said where they couldn't get certain contraception.
Same boat as everyone else where the doctors aren't very helpful.
I'm putting it down to hormones?
Hoping it passes after pregnancy

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