Migraine with aura - can anyone explain what it's like please?

[Sarahjsxx]

Hello,
So I've been having what I think are migraines with aura for a few year now, I suspect are related to hormones after 3 children & breastfeeding, they seem to be cyclical for about 2 weeks of the month. I have had several blood tests all clear, eye test all fine. Gp says they can't offer me anything apart from diagnosing chronic fatigue syndrome (I don't think it's that) or giving me antidepressants (🤔)

This is what I have (I get heart palpitations & hot flashes too)
Sore burning eyes
Headache (sometimes neck pain)
Ice pick headache
Floaters
Pain behind my eyes
Ringing ears
Dizzy disorientated feeling (the worst symptom)
Brain fog

Does anyone who has migraines think this is what it could be? And is there anything you take to help? Iburofen helps a little. Thanks for any advice ! X

Also - tingling lips and hands sometimes

I have classic migraine with aura & mine are like this:

Starts with absolutely no headache but my eyesight is affected - I see stars, flashing lights etc. It starts off small but within 20 minutes I can't see anything but stars & flashing lights

After 30 minutes of getting the aura, my headache starts. It is so painful that breathing its torture (as my breathing means my head moves ever so fractionally)

I am violently sick, often for hours (I think because the pain in my head is so bad my body reacts to that by vomitting).

I have so lie completely still in a pitch black & silent room & pray I can stop being sick for long enough to get some sleep.

If I can sleep, I can generally sleep it off in a few hours.

When I wake up, I am absolutely starving.

I'm 'lucky' in so far as mine are generally caused by light, so as long as live in sunglasses all year round, avoid flicking or flashing lights (hard in the autumn & spring when the sun is low as driving past trees can often be enough to give me a migraine as the light flicks behind them!) I can avoid them.

Everyone's migraines are individual to them but it does sound like you have them too. They suck!!

My aura migraines started with a small dot of blurred clear kaleidoscope vision, which then got so big it would block out one complete side of my vision. Around 30 minutes after this it would pass and the pain would begin, piercing pain behind my right eye/eyebrow usually along with nausea and then violent vomiting if i hadnt been able to take medication in time( anti sickness tablets and ibuprofen) . I would have to get to bed as soon as i could and try to rest or sleep it off. Id then feel groggy like a migraine hangover for a few days afterwards.
I didnt really have any of the other symptoms you listed, sorry if that doesnt help. But that is my experience of a migraine with aura. Hope it helps a bit op.

Like the poster above i also wake up starving.

My sight is like looking through water that goes from each side towards the middle then I get flashing lights. Then the headaches start and I can't move an inch. Then I'm sick.

Your symptoms sound more like mine and I'm (I think) going through perimenopause, GP agreed. Waiting to have bloods to confirm. The palpastions, hot flushing, dizzy disorientated feeling, ringing in the ears, I thought was a panic attack, but gp thinks it could be hot flushes I'm having.

Mine start with a mild twitch kind of behind my right eye. Then my vision starts pixelating in a crescent shape... Similar to how they used to blur our number plates on TV in the 90's. Then nausea and photo phobia followed by my head feeling as if it is being cracked open.

Thankfully I can usually recognise them coming on at the twitchy eye stage... Paracetamol taken then normally gets rid

I get the looking through water vision disturbance like @rach7979 it comes in from either side but never makes it to the middle. Often it darkens the vision there too. This is usually after the pain of the migraine has started which for me starts like a tight band round the top of my head and if it starts moving downwards towards my eyebrows I know it will be a migraine.

Or I get the kaleidoscope like @Lovehearts82 and @Unescorted it starts as what I describe as a pixel glitch which gets bigger and bigger in a crescent shape and more of my vision is affected. This starts just to the left or right of centre of my vision. There is no pain until about 1 hour later when the vision has cleared and the migraine comes on fast.

Migraine for me is ridiculous pain in my head, nausea and a horrible bodily feeling that is screaming something is very wrong. Luckily I can usually kill it dead with some well timed meds, a dark room and sleep. But my children are older, it was much harder when they were little.

Each person is different, some take soluble paracetamol and a full sugar coke. I have had migraines since I was a child, I used to vomit with them.

I have migranes that are just an aura (no headache at all)

It starts as a bright blind spot in my central vision and then spreads out into a circle of bright ziz zags over about 45 minutes. It gradually disappears out of the edge of my vision. Afterwards I'm groggy, feel generally crap, and want to eat sugar/carbs.

It looks like this but a bit more multicolour/holographic

I have only had a few in my life but they start with a crescent shaped wobbly distortion which moved from right to left obscuring my vision in the same way that staring at a bright light would. This then seems to float off out of sight and I am left totally exhausted. Sleeping for a couple of hours helps and then the day after I seem ok. Thankfully I only get a slight headache which doesn't last long.

They seem to run in my family. My DF, DSis and both of my DCs get them.

Does anyone else find they need to urinate much more than usual after a migraine?

Mine were very similar to what @QuartzIlikeit and @Lovehearts82 described above. For me the visual disturbance looked a bit like when you look at a bright light and look away, you get spots on your vision. Like that but they didn't go away and get bigger/more numerous until the headache kicked in.

Sumatriptan the best thing I have ever found. I take it as soon as aura starts. Can sometimes manage normal ish day then.

My aura are just like this. I don't normally get a bad headache.

I get hormonal migraines, they show up once a month, usually at the end of a period but can vary slightly.

The first sign is usually yawning, I can't stop yawning even if I'm not tired. Then a general feeling of being spaced out / disconnected from the world. It's a bit like being underwater.

The headache will show up later, right side of my head mostly. It will hang around for about 72 hours but less painful towards the last 48. I usually feel exhausted and slightly nauseous.

Things that help:

Daily medication (topiramate) - used to be significantly more frequent before I started this
Asprin - 900mg taken as soon as possible (neurology recommended this)
Darkness
Sitting / lying under the shower
Having a fan on to cool my face (usually while also covered in blankets trying to keep the rest of me warm)
Sleep
Caffeine- sometimes helps
Squash- i can tolerate this better than water when feeling sick

I have got one of those cold mask things but by the point I'd use it i usually feel so rubbish it just seems too faffy. Tried the "forehead" type stuff but never found it was any use. Triptans I can't take because they make me feel like I'm going to die (really crushing chest and very rapid heartbeat) but they were quite effective in helping the headache so probably worth other people trying!

Same here, but with a headache later on (although not always). No vomiting here. I think my triggers are aglomerations (tension for me) with harsh lights and sounds (fairs, festivals, big malls...).

I get the aura part first, pixel sight, swimmy eyes, can barely see

next up is the arm and face numbness and pain, all down my left side, mouth completely numb

Then a piercing headache on my left side.

Ritzatriptan sorts me out and sleep

But then 24 hr of brain fog, like in go slow mode and a ridiculously sensitive scalp, I usually struggle to brush my hair for several days.

No aura but a brainpain that feels like my head is being poked with a hot rod. After a few hours nausea and vomitting.l Then once I feel more like sitting up wearing sunglasses something greasy and sweet helps (DH knows to get a McDonald's portion of salty chips and vanilla milkshake). Then sleep, sleep and next day my head feels bruised.

Mine are very infrequent but are a bit like QuartzIlikeit described.
Start with no pain but some visual changes- zig zags in outer part of eye followed within the hour with a shocking headache. I have to lie down in a dark room, painkillers, cold flannel on forehead. Fortunately I sleep it off. They normally happen late afternoon/early evening & I don't emerge until the morning. I then feel fine.

Mine are likely stress related- linked to hormones & poor sleep.

I'm lucky that they are infrequent - so far. But I feel for anyone that suffers on a regular basis. They can be completely debilitating.

Same as PP, I get the bright blind spot, as if someone has flashed a torch in my eye, which slides across my vision expanding into the pixilated crescent (my DF called it the "flashing snake"). That takes 45 mins or so to clear, during which time it gets harder and harder to understand people talking to me. If I take a migralieve pink immediately, I can sometimes head it off at this stage. If I don't have any or am too late, then I get a headache - but not as awful as a full migraine headache that some PP get - nausea and exhaustion, brain fog. Carbs, caffeine and a kip are the only things to do. The next day it's normally over but I have a migraine hangover for a day or two.

I've heard of people getting tingling type auras, OP, although it sounds quite different to these occular auras most people are describing.

Oh yeah, triggers: extreme tiredness, looking at things silhouetted against bright light (meeting with someone sitting in front of a window for eg), or flickering light through trees as a PP said, and if my HRT goes skewiff and I get hyperoestrogenated.

@GrannyAchingsShepherdsHut mine are like this, like a kaleidoscope of flashing and a gap in the middle where I can't see anything at all, so if I was reading a book at the time, there would be a blank where a few words were.

Mine used to be worse and more regular. After a hysterectomy almost 10 years ago, they are now fewer but I never know when they are going to hit. The kaleidoscope will come on very suddenly. If I take 2 co-codamol straight away, it will go in half an hour, the kaleidoscope will sort of drift off and disappear. It's always in my right eye. Then I'll be left with a full headache for a day or so.

If I'm lucky enough to be at home, I'll lie down in a dark room. As a teacher, I've had them come on in the middle of a class and I've had to neck tablets and carry on!!

Thank you so much for everyone's replies, so sorry to see so many people suffering with this! Definitely the dark room helps and wearing sunglasses in daylight (I do permanently almost!)

The underwater like feeling is definitely the best way to describe, I'd never have thought of describing like that but that is very accurate! It's like my ears are blocked and feel sort of dizzy/vertigo kind of feeling? And I guess even a 'derealisation' kind of feeling

Yes, but that is because I have drunk my body weight in liquid as I get an insatiable thirst but do not urinate. Once the migraine eases I have to run to the loo constantly.

Has anyone ever thought of a deficiency causing the migraines? X

Mine are almost exactly like @GrannyAchingsShepherdsHut too. Very little pain as long as I take cocodamol as soon as the aura starts. The aura passes usually within half an hour but the ‘postdrome’ phase (migraine hangover) lasts for hours, this includes aphasia (less able to understand or find words), hunger and extreme fatigue.

Mine are 100% hormonal and usually occur in the first couple of days of my period. WhenI was pregnant I had one every day for three months! I gave up caffeine years ago which helped. When I was younger they used to be much more painful so that’s something I guess.