Aura migraine - any other sufferers out there?

[ImaHogg]

I’ve just woken up with one.
I absolutely hate them.
I’ve had them for 15 years and mine must be triggered by hormones because they started in my first pregnancy, then the second and now I get them in the 2nd or 3rd day of my period and getting worse (I’m 48).
They start as a sudden blind spot which progressively gets bigger, from that blind spot I lose my vision (ie can’t see a full clock face or only see half of someone’s face), the blind spot then turns into a psychedelic zig-zag flash which goes right across my vision and gets bigger u til it moves away. I then have to lay down with eyes covered as I basically can’t see much at all. It lasts around half an hour and quite often I don’t actually get much of a headache but they leave me exhausted, nauseous and feeling very weird and spacey. Some very bad ones have left me with numb hands and lips and feeling very cold and confused.
I absolutely hate them and have never gotten used to them. They scare the hell out of me and I worry about strokes as they run in my family and apparently you have a greater risk of stroke as an aura sufferer!
My mum and sister get them too.
Doctors and opticians don’t appear that interested tbh.
I take neurofen to ward off a headache but nothing stops the aura.
I fear mine will get worse as I head into Perimenopause.
My day will be buggered now I’ve had one this morning.
Any fellow sufferers out there? Have you found anything which helps?

You have described exactly how my auras are. I used to get painful migraines with an aura, now I just get the aura. I am left wiped for a few days. I don't lie down till it passes, I just get on trying to mumsnet or whatever I was doing My dh worries about the stroke risk, but I don't so much as my gp seems to not think there is a risk.

I've started getting these, triggered by bright lights or low blood sugar. I think it's perimenopause related. For me taking paracetamol, eating something and having a coffee helps - if I'm in early enough, that clears it in about an hour. Still very unpleasant and stops me working for the duration.

I get exactly that but mine turn into crinkly tin foil at the edge. I was not allowed to carry on taking the pill because of them as I think this was a trigger. Usually sleep, stress and low blood sugar trigger them. I think panic is a symptom of them too. Then it turns into a dull thudding headache. I find the worse ones come with nausea.

Yes get them too. Usually headache or groggy afterwards. Havent found my trigger yet

Interesting, at 41 they have got less. But I have had a couple of thunderclap type headaches , waking at night as if my whole head is in a vice, oh my god, only just managing to get up, scrabble for whatever painkiller is in the cupboard, paracetomol or sudafed, get back in bed and hope for sleep.

Mine are exactly like that too. It found that simpler pain relief worked better than the heavy stuff (Anadin instead of Migrelieve etc) but cold and hot worked wonders. Heat pack on the back of my neck, ice pack on my forehead and temples and the absolute best thing is a back of the neck and base of the skull massage. DH can make a migraine slip away quickly with a damn good massage.

My doctor made a suggestion for me to take my pill for three months straight before a break so instead of monthly migraines I get them 3 monthly.

I’m so pleased actually to read this as I get them and I find them so worrying. I will get tunnel vision where I lose my peripheral vision from left or right or both. More terrifying is that I find I lose all reading, writing and speaking comprehension, it’s like being a child again learning to read and I forget half my words. Same as others my GP has never seemed overly concerned, but I find it so close to a stroke how can it not be damaging? I worry that I’m damaging my brain every time I have one, I feel like I’m getting stupider and slower as I get older, although I don’t have them more than about once a year and I think stress is my trigger.

I get them exactly as you described. First got them round about the time I started getting peri menopause symptoms, aged 43. So whilst for me it does appear to be hormone related, I also noticed I didn't have a single one during the first lockdown (had to work from home) then I had 2 the first week back in work.

They last between half an hour to an hour and I've realised I can 'help' them go away by focussing on reading something - not easy when you can only see part of the text!

Agree that doctors and opticians don't seem bothered, but there's obviously something not right going on in there?

I do feel 'weird' for a bit after having one, like feeling a bit 'spaced out.'

Mine don’t usually turn into a headache after either, I get ‘normal’ headache migraines but these are a separate thing. The silent ones used to last about an hour but the last one was more like 2. I looked at going to the Migraine clinic but you have to be referred, and as GPs don’t seem to think it’s a big deal I can’t see that happening.

I started to have them as a teenager and would have phases of several in a week and then none for ages. The 'flashing lights' thing I always found disturbing, but it was the creeping numbness that frightened me. It used to creep slowly up my left arm, into my neck and mouth and then move off upwards from my head! I found it difficult to find the right word to use and had trouble talking at all. Horrible. I rarely got a headache but felt weird for the rest of the day. The worst triggers I found were sunlight on water and driving along a road with trees, where the sun would flicker on and off. I still find this very offputting.

That’s how mine presents- I take feverfew it’s brilliant and lessens the amount I get

That's exactly how mine start and every single time I do the same as everybodysang
I think I've looked at the sun or something bright that has caused the blind spot. After the visual disturbance I get a terrible headache, usually over one eye. The pain is so bad I have to put pressure on the area by burying my head in the pillow
Ex uses to get them and cured them by taking low dose aspirin every day
The GP has prescribed me Sumatripan but I haven't yet tried them
The last time I had mine was 2 weeks after the AZ vaccine. I think it was related as it happened both times. I had dizziness and nausea as well as the headache and aura and both times it lasted for 9 days

I used to get them 4 or 5 times a week, went to the doc after 15 years of suffering - they did loads of blood tests to rule out things then put me on beta blockers - it has been life changing.

They also told me if it didn't work there were other things to try so best to try with docs.

I knew I could rely on Mumsnet to find fellow sufferers. It has put my mind at ease a little although I do feel so spaced out still. The weather is weird today here in Essex, it’s very heavy ans feels like a storm is brewing, probably contributed to the aura.
MrsJackPearson I worry that each aura has damaged brain cells or something. There is probably no connection but my mum had auras for 60+ years and now has Alzheimer’s and it does concern me that the aura does something to the brain.

If you get them frequently ask your doctor about topirimate. It really helps me with aura migraines - I used to get several a week

laburnam it’s funny you mention Feverfew. My dh uncle is 90 and claims to have never suffered from a headache, he grows the plant and eats some everyday, has done for years.

I’ve noted the meds recommended, thanks, I will ask when I have my long awaited (8 weeks!) gp telephone appointment next week.

Yes I get the same. Approximately twice per year. No particular triggers although I suspect it's hormone related.
Very good description!
I'm terrified and have to call DH because I have kids at home.

I’d also recommend asking for sumatriptan from your GP. I started suffering with hormonal migraines in my early 20s (always first day of my period). I get the aura and vision issues as you described and then laterally began developing numbness in one side of my body. I was prescribed sumatriptan and it really helped. You take one at the onset of the aura then another a couple of hours later. The GP did say though that if you have to take it very regularly then they would look at putting you on daily tablets instead.

I get my but quite rare these days, about one a year now, thankfully. No pain except for a slight headache. Starts with a blind spot which gets bigger, then zig zag lines like the television with no channel on.
My fingertips go numb, my nose and my lips. I then have asphasia, where cannot speaks properly, as I cannot find the right word in my head. It’s very frightening. I couldn’t tell you where I live or anything. I was once asked what I wanted for tea. I wanted to say chicken but it came out as liquorice. Trying to read things but they just don’t make sense and words don’t seem real. It’s very, very odd. Probably lasts less than an hour but it’s frightening. I try and take ibuprofen when I feel it coming but the best thing I can do is to close my eyes and try and sleep.

I get them, but if I take a shedload of painkillers at the onset I’m usually good. Ibuprofen with lysine right at the beginning and magnesium spray (which I use rivalry migraine or not), stops it turning into a full brown migraine.

I was also diagnosed with ocular migraines which were hell when I had them for weeks on end.

I have exactly the same thing. It seems to be triggered by tiredness and/or low blood sugar. I take two Solpadeine the minute the first spot comes which helps a lot. I used to get a headache and nausea after my sight came back, but if I take the pills and rest, it seems to fend it off.

@ImaHogg I get mine on prescription, but you can buy them in Boots ( be prepared to fill in a long form though)
I couldn't live without them now!

I get the same thing but without the after effects. The flashing spot then zig zag lines that slowly covers my whole vision then recedes in about half an hour

I also got my first in my first pregnancy... I thought I was having a brain haemorrhage !

I had a brain and spinal cord MRI many years ago that showed the traces they leave behind in the white matter of the brain. I was told I could not use hormonal contraception due to the added risk of CVS.

Mine are triggered by stress, hunger, dehydration, hormones. If one happens at work I have to cancel or delay the next couple of appointments and lie down until it passes. I would be dangerous to try doing an intricate, handle machinery or young children or drive a car

I am post menopausal now so hoping they happen less and less frequently

Good description OP, I get them exactly as you describe. If I get a headache afterwards it's usually slight. I usually feel a bit off and tired but no other symptoms. I'm pretty convinced it's connected to dehydration in my case like pps have said. I can almost always recall a day or two before when I didn't eat or drink properly.