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?

I get them exactly like you have described. Mine can be triggered by light (low bright sun, bright tv in a dark room or bright but cloudy days when the light seems to come from all direction through the clouds) or seem to be hormonal. I’ve had them since I was 10 and they were worse when I was on the pill and when I was pregnant.

I wear polarised sunglasses a lot, have the blue light filter on my phone and keep screens very dim which has seemed to reduce the frequency a little.

I’ve never found anything really helps once a migraine has started. sometimes if I take a Migraleve as soon as I see the first hint of fuzziness, it can be less intense but usually it’s passed before the medicine has any impact. Mine come in groups so I’ll have 3 or 4 in a week then go a couple of months without anything. Every 12/18 months I have a whopper that turns into a full migraine headache that takes me a couple of days to get over.

I’ve have the same spacey feeling when it clears and I always feel really hungry!

They really are horrible OP and I completely understand your worries about strokes.

Yes! I don't get them often but they are so disturbing. Every single time I think "oh, I must have looked at a lightbulb/the sun" and then I realise it's not going away and the zigzags start. They do tend to be over quickly - about half an hour - but I feel so so drained afterwards. I know a friend gets them quite often and takes a migraine drug but they always happen when I am away from home and I never have anything on me. I don't have any practical help, I'm afraid, but hoping to see if anyone has good advice!

I get them very infrequently, usually triggered by flashing lights (so I avoid them like the plague). I find that if I take 600mg of ibuprofen and lie down in a v quiet and v dark room for an hour it usually stops them from getting bad. I do have to catch them early though and that can be hard if I am out.

I have something similar. Sometimes it's my vision, I get bright zigzags in my vision. Sometimes I just feel slightly nauseous and tingly in my face. Often without a headache. It's very unpleasant and nothing helps except sleeping. It can last over a week on and off.

Thanks dylanthedragon I too keep everything low level on screens. I’ll look at the polarised specs, I need something better than my current sunglasses.
I too can have a few in a short space of time, then go months without and I have never understood why that is? And probably never will. Auras are such a strange phenomenon and I’ll probably never get used to suffering from them.

Look up hemiplegic migraines as that is what you have from the sound of it, the same as mine. Starts with an aura at the edge of my vision which then moves into the centre. It then looks like the old snake game from Nokia phones! If I get paracetamol in quick enough that can be it. Sometimes if I snooze it goes then. If not I get numbness on the hand and mouth the side of the migraine. Sometimes it then repeats down the other side. It does mirror a stroke so I wear a bracelet with hemiplegic migraine on it.

Another one who gets them here and agree that doctors/opticians never seem to care. I also will get quite a few for a bit and then nothing for ages. I haven't noticed any cause but interesting that some people have said it's hormonal

everybodysang,SeaToSki,Cantstandtherainydays sorry you all suffer too but it is reassuring to know others have the same symptoms. I suffer from anxiety so my auras always trigger panic in me!

Have you tried sumatriptan? It's the only thing that works for me. I'm 68, so probably not hormonal, but my triggers are dehydration ( I'm really bad at drinking enough) and stress. I've also had them after driving with the sun in my eyes, even with sunglasses!

I used to get terrible migraines as a child; I'd be sick and hidden away under the covers for two to three days sometimes.

Mine started when I was about 4, and were worst when I was about 7-11, always starting with the aura, pins and needles, followed by vomiting.

I've just in the last few years begun to get just the aura (which is still awful) but now it just leaves a bad headache, nothing like the agony of a full blown migraine.

stayingaliveisawayoflife thanks, I will look that up.
mynameiscalypso I honestly thought I had had a stroke with my first one, I rushed to the gp and he was so unhelpful.

Fellow sufferer here . Mine are just as you describe although I usually feel fine afterwards. I have been getting them for around 15 years , sometimes nothing for months and sometimes 3 a week. I struggle to find a trigger , although sometimes dehydration or stress seem to bring them on. When they first occurred they would usually bring on a panic attack but these days I just ignore it and carry on as usual . They seem to pass quicker that way . I do dread one while I'm driving though .

@ohsuzannah

Have you tried sumatriptan? It's the only thing that works for me. I'm 68, so probably not hormonal, but my triggers are dehydration ( I'm really bad at drinking enough) and stress. I've also had them after driving with the sun in my eyes, even with sunglasses!

No I haven’t, can you get it off the shelf or is it prescribed?

MorriseysGladioli 4 is so young, you poor thing. I worry my kids especially my daughter will suffer, she is 13 and has had a few the last few years.
oldsoulrebel I drive a disabled lady for a living and I constantly worry about getting an aura whilst driving.

I used to get them, sometimes twice in one day. The zig zags were like shimmering stained glass and although they annoyed me were also very beautiful! I often stumbled over words and could not stay coherant. Usually they would last around an hour from the sharp pinpoint of light and the weird "prodrome" to the point where the zig zags dissapear out of my peripheral vision. I rarely got headaches but I was "meh" for the rest of the day. I took beta blockers to prevent them and it seemed to work. My triggers were red wine, monosodium glutomate (my worst ever was after eating out in Taipei) and being run down.
Since menopause I have not had a single one (fingers crossed I am not tempting fate here).

Exactly as you described. They are very irregular though, so for me I don't think it's hormonal. I tend to get them more when I'm tired and haven't eaten properly. I'm very aware of the pre cursors even before the auras start, so I pop some paracetemol, stay away from screens and sit in a darkened room for a bit if I can.
I used to get horrendous migraines as a child - vomiting, severe headaches etc. I haven't had one lilke that since I was a teenager though, now they are a carbon copy of what you posted.

I used to really struggle to tell anyone I was having an aura migraine as I felt really anxious. I remember sitting at work a few years ago and my vision was completely gone and my fingers were numb and I just couldn’t tell anyone I was unwell. My manager and team at the time were all lovely so there was no reason to worry about it but I just couldn’t say the words. I sat there for an hour pretending to work then struggled home on the train. That then turned into a three day migraine with the worst pain I’ve ever experienced.

Since then, I’ve told colleagues when I’m not having an attack and explained that I can be a bit weird about it at the time. Since then it’s been much easier to say during a migraine.

I've had them since I was about 10 (so 50 years) my triggers are strong smells, irregular sleep (particularly too much) and the end of stressful times (always on the first day of a holiday, as I relax). The best thing I have found is soluble aspirin and proper coke with sugar at the very first sign of the aura.
They are nowhere near as bad as they used to be, I very seldom have more than the aura for 20 minutes. I used to have headache, numb fingers, aphasia (couldn't speak), repetitive thoughts, and that horrible migraine hangover, there are some benefits to age in my case!

I had my first one in my twenties, and it was exactly as you've described it @ImaHogg. It scared the living daylights out of me! I had absolutely no idea what it was, and neither did my GP, and on the basis that I'd had encephalitis as a child (when recovering from measles), he referred me off for all sorts of investigations. It felt like a bit of an anti-climax when the consultant told me it was "a migraine without the headache". It's only fairly recently that I've come across other people who suffer from them, and learned about the stroke risk. I have no idea what triggers mine - they appear to be completely random, but as I've got older, they leave me feeling much more drained. Right up until my late 40s, I would have one, ride it out for the half an hour or so by just shutting my eyes (luckily my employers have always been sympathetic), and then just get on with life. Now, I feel really quite sick and weak after one, and definitely have to rest. But I gather other people find the after effects reduce as they get older, so don't panic. And to further comfort you, I'm now very much post-menopausal, and although I find them more draining, I don't get them more frequently.
Unfortunately, I've never found anything to help with them either. I tend to agree with you that professionals don't seem to take them very seriously. Which reminds me - I had one at the end of 2019/start of last year - it was just like the initial stage of one, that little blind spot, but it literally lasted two weeks before I sought professional advice - GP who did actually refer me to the eye clinic, where I was made to feel like a complete time waster. It did eventually clear but took at least another week. :( Never did become a full blown ziggy-zaggy flashy one though, which was odd.
But, yes, sending hugs, actually to both of you @ImaHogg @dylanthedragon as they are very unpleasant.

Mine are triggered by the change of light, so going in and out of bright sunshine. I wear sunglasses at the first hint of sunshine to keep the light as level as possible.

I can avoid the headache if I take painkillers - anadin migraine works for me - as soon as the aura starts but the aura itself makes me feel sick and spacey and oddly makes my nose numb!

yep i get them occasionally. The worst bit about it is when they happen at work and then i have to leave work to go home and lie in a dark room and have to drive home with half my vision missing. I panic too when I get them, I really hate them.

I get them too. Strangely the last two I had were after eating walnuts ( I rarely eat walnuts so seems more than a coincidence).
I've also noticed them occur after eating too much chocolate.
It's truly scary I agree.

I get ocular migraines which sounds similar to what you describe. Starts with the blind spot and I can't make out full faces etc. Then it gets worse my vision starts flickering (can't think of a better way to describe it) it gets faster and faster until it peaks then it starts to slow down and then it stops. Sometimes I get a headache afterwards, sometimes I don't. I get them maybe a couple of times a year but I had one a few weeks ago and that's the first I can remember having for a long time. Usually I lie down and let it pass it lasts around half an hour but I was working when it happened so had no option but to power through it. It was really difficult trying to read customers orders off of the slips and serve them out as I could barely see. Horrible.

I get them, have done since my teens. I never get a headache with them (though I do get frequent headaches separately). Like yours, they last about 30 minutes but I feel fine afterwards.

I have worked through mine mostly now I know what they are. I have even read a story to my class with a numb mouth, crazy I know. When I had my first I had a lumbar puncture and scans because I was overweight so they thought it was a stroke. A consultant neurologist said it was hemiplegic migraine. Now they are annoying and I just get through them. I have had them more frequently during covid but then I have had more stress. Normally I get one on sports day and the day of the Christmas play and other random times. The confusion is most annoying when familiar words have gone. I had one yesterday so probably won't feel over it till tomorrow.