Does anyone else suffer from Aura Migraines?

[Twoweekcruise]

Sorry, this isn’t an AIBU, I’ve put this here for traffic as I am so scared of these auras. I’ll get it moved if needed.
Does anyone else get aura migraines?
I first experienced them 16 years ago age 32, when pregnant for the first time then again 2 years later during my second pregnancy. I had very few after that, during my late 30’s.
I am now 48 and for the last 8 years or so I have been getting more and they seem to becoming more frequent.
My trigger must be hormonal because I get them during my period, usually the 2nd or 3rd day. My mum also got them and my younger sister also occasionally sufferers.
I absolutely HATE them. Even after 16 years they still scare the hell out of me and trigger panic attacks.
They start off like I suddenly can’t see properly, if I look at someone I can only see some of their features or on a clock face numbers will be missing, it then turns to a definite blind spot which then becomes a small curled up zig zag which slowly unfurls until I then have a huge psychedelic zig zag right across my vision. I have no choice then but to sit or lay and cover my eyes for about 20-30 mins until it passes. Sometimes a headache will follow but often there is nothing other than a weird spaced out/washed out feeling which can last a day or two.
I have mentioned it to my GP several times but they don’t seem particularly interested. I have had two this week and have booked to have my eyes tested.
Can anyone relate to this? Do you take any meds for them? Is there anything which can be taken to prevent auras starting? I drive for a job and am in constant fear I will get one whilst driving down the motorway.

I get them, Occular Migraines. Mine are triggered by hormones or stress.
I used to take something called migraleve or something similar. There were pink and yellow pills. You took one colour, can’t remember which, when you sensed the aura beginning and if a headache developed you took the other colour pill.
They are frightening aren’t they? I thought I might be starting with epilepsy or a brain tumour. Was very relieved when I was diagnosed.

@Chemenger

I’ve had them since I was 12. Sometimes I don’t have them for months then I will get them every day for a week. Two soluble aspirin with or without full fat coke will usually stop them but they are over in less than half an hour anyway. I always get them on the first day of a holiday and if I’m not sleeping well.I don’t usually get a headache but sometimes I feel “hungover” for want of a better word, I used to have trouble speaking (aphasia) along with the aura but that has diminished.

I sometimes get the loss of words, that frightens me the most!

Yes! Sympathies OP. I get a lot of migraines, and have since early childhood, but thankfully relatively few auras. In fact, they disappeared completely for about ten years, before coming back again when I started a stressful job. They scare me more now than they did as a kid! In fact I took myself to A&E last year when I had about seven auras in nine days, including two in the space of a few hours that I thought surely, surely must be a stroke this time. But I was fine of course, and I've only had one since then. Our bodies are strange. For me, auras seem to be my body's way of saying, "Not listening? Well, I'm bringing out the big guns then."

I can really recommend reading a book called Heal Your Headache by David Buchholz. Not only does it have some great tips about reducing their frequency (hint: strip every common trigger out of your diet for a few months and then add prophylactic meds if you're still getting them), but whether or not you choose to follow the suggestions, I found it a very reassuring read overall that made me less paranoid about the auras themselves.

@Twoweekcruise - I don’t think that your fears are unfounded. I would take those fears back to GP and ask for referral to neurologist. (Btw, I am now using oestrogen gel and it’s bloody wonderful.)

I get these. There doesn't seem to be any trigger but if I take paracetamol as soon as my vision starts to go a bit funny it usually manages to stave off the rest.

Gosh, I didn’t realise how common they are, when I mention them to friends they think I’m talking about classic migraines. I will definitely try some of the meds mentioned.
SchoolForScoundrels I was due to have a mirena via the gynaecologist at my hospital as I am having horrendously heavy periods but once they knew I was an aura sufferer they wouldn’t let me have it saying it could make it worse. Good to know yours haven’t been exacerbated by the coil.

They frequency of mine has fluctuated over the years mainly due to hormones - my pregnancy with DD was worse than DS, the brief time I was on the mini pill, teenage years. Dehydration and disturbed sleep is also a big trigger (either late nights with too much alcohol or the baby years) and being stressed. Strenuous exercise and strong smells occasionally set it off too.
Sugar, caffeine and carbs are my usual go to treatments, along with a really hot shower and Syndol tablets.

SFVin Thanks, I’ll check out the book.

Yes I get these. I don't tend to get a headache with them. I can't pinpoint what triggers them at all

Justilou1 I will need to speak to them anyhow as perimenopause is driving me insane. It’s a battle trying to get them to acknowledge I may be in peri.

I get them regularly and find paracetamol-with-caffeine, and a cup of strong coffee usually pretty much nips them in the bud. Im left with a residual headache for probably half a day.

I get these too and gas my first one 15 years ago when I was pregnant. I probably get 4-6 a year. Sometimes I go months, other times I can get 2 in a weekend. I take 2 cocodamol and 1 ibuprofen if I can as soon as it starts. I rarely get a bad headache. The aura (starts with spotty vision thenthe zig zags and lack of periferal vision) lasts no more than 30 minutes usually leaving me feeling washed out/with a mild headache. Occasionally I feel nauseous. I haven’t been to the GP about them other than the first one which was very scary. Occasionally I have mentioned them and think they are quite common. It is hard to know if mine are hormonal as I am on the mini pill so don’t have periods. The first one was though (and quite a few people seem to have their first one when pregnant).

I've had them too. I once lost the ability to read/ recognise words with mine and it properly freaked me out. I came off the pill which helped but mine are also triggered by stress, I think.

You have my sympathy because they are really scary and the migraine hangover is bloody awful

I get them as you describe & usually realise because I keep wiping my glasses to try to remove the mark then the black spot gets bigger & then becomes the zigzag or heat haze across about 2/3 of my vision.

Taking magnesium regularly has reduced them. When I get them I need to put unbearably hot things on my upper back/lower neck & ibuprofen- if it progresses I need loads of caffeine (very dark chocolate). I also get vertigo as an after effect & tbh I would have the aura a million times to avoid the residual vertigo.

Mine are triggered by stress followed by relaxation or extreme sleep deprivation (I have insomnia) followed by a long sleep. So I'm great in a crisis but physically fall apart when it's over

Yes, i get them too, blind spots and also letters jumping from the page. i also get pins and needles travel from my fingers all the way through my body till its focused on the tip of my nose and gums. I also get confusion and speech issues 9/10 i end up in a and e with suspected stroke. Very rarely do i get pain with them.

I've had them since about 8. So about 30yrs. Now more often I don't get a headache, just the suddenly can't see properly, can't think of the correct words to use and can't read. My triggers are low blood sugar, sudden moving from bright light (eg outside) to low light inside, not drinking enough water.
I try to always wear sunglasses when outside.
Low dose aspirin (daily) has been shown in studies to help prevent aura. I'm planning to ask my Dr next time I see him of its ok for me to take it.

I get these and they are triggered by hormones almost exactly the same as yours but I get them half way through my cycle as well sometimes
Two things help. First ask your gp about rizatriptan. I have a prescription for maxalt melts which contain rizatriptan and they work by reducing the swelling of Blood vessels around the brain. You just take one as soon as the aura starts. I need to have a large drink of water and lie down somewhere dark as well.
Secondly I’ve found reflexology really helps to balance hormones and make my migraines less frequent/severe. It generally helps with all the pms symptoms too which is great.

I get them exactly as you describe. Started in pregnancy and since then I sometimes get them before my period. I share your anxiety about one starting when driving or something like that. However, for an unrelated reason I have been taking low dose propranolol, which is a type of beta blocker, and I haven't had one since. Interestingly, my dad suffered from migraines (the sore kind, not the ocular) and betablockers were his saviour!

Sumatriptan helped more than anything. I also went for an eye scan and without ranting to scare monger they sent me for an emergency out patient appointment through which they discovered a brain tumour, removal of which has stopped there migraine. U mean that is the extreme but does an eye test doesn't hurt.

I forgot to add that mine are also relaxation post stress so I had a clanger of a migraine on the first day of our honeymoon .

It is comforting to know that there are so many of us out there and with wisdom to share about them. Being alone with your fears for the first one was the worst, I think.

I got a glare reduction filter on my glasses which I think has helped. I also take magnesium. Sumatriptan plus ibuprofen and codeine when they do happen stops the headache and reduces the ‘hangover’. I make sure I keep up to date with eye tests as well.

I get these and seem to get more now I'm getting older. It's like looking through a kaleidoscope. I had loads over the summer but haven't had one for a few months now. No idea what triggers them either.

I do @Twoweekcruise. Mine too, are linked to my hormones and I got my first one aged 13. I’m wary 30s now. They’re so debilitating, each one is totally different (bar a few traits, such as total confusion - I forget my own name - and appalling numbness) and each time I wonder if I’ll ever be well again. I always recover. I always pop a triptan as soon as it starts to make the pain stop, though they’re not without their own side effects, and then just go to bed.

Weirdly since pregnancy the aura ones are marginally less frequent and I now get non-aura ones as well, which are always identical and sit on the left side of my head, make me feel sick and wipe me out for days.

It’s a shitty, not-very-exclusive club.

They sound very weird and disturbing. Not had those but did once go to bed and get an overwhelming smell of school dinners - sort of tinned mince and boiled onions . So strong I got DH to sniff the room for me to find the source but there wasn't one. He couldn't smell it. Had a couple of other strong phantom smells and felt dizzy and nauseous during them. I was told by GP this is also a kind of migraine.

I was going to ask about contaceptive pills, but you've answered that question.

I didn't realise for a while that my aura (with no pain) was a migraine because I didn't look into it much. I got my first and only few full migraines in the week after I had given birth to DD1, then started with auras about 6 months later.

So when the gp asked at my combined pill-check appt about migraines I'd always said no. Until one time I asked whether the auras were important. I'd already had an MRI for a different problem that found unexplained white patches on my scan, which can be linked to strokes. So they took me straight off the combi pill and swapped me onto the mini pop pill.

The gp said not only did they not want me having a stroke (me neither!) but that the pill could cause the migraines themselves.

I've not had a single aura since then, about 9 years ago.