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 first had this when I was pregnant and I absolutely panicked thinking I was having a stroke or something! The first time I had one was the day I'd had the tetanus, whooping cough etc jab - not sure if there was any connection.

I haven't had many since fortunately. Possibly was hormone-related although the last time I had one at the end of a sinus infection. Bizarrely the sinus problem cleared up completely after it, so it could have been related to some kind of internal pressure?

As well as other things already mentioned, I find bright lights (not just flashing lights or sunshine) are triggers. I wear sunglasses in many shops as the brighter shops are a major trigger. When working in an office, fluorescent lights caused minor auras several times weekly. I've only recently realised that the smell of lilies is another trigger - I had a 10 day migraine after being given a bunch of lilies!

Has anybody seen the You Tube videos of “ocular migraines”. If you struggle to describe them to other people they are quite good.

Yes I actually found these really reassuring as they also explained the difference between migraine and stroke.

I get them too - brought on by hormones, mainly, and sometimes tiredness and/or stress. Sumatriptan helps if one comes on but I've been taking soya isoflavones as a daily supplement and they've stopped completely. I took the isoflavones for perimenopause (I'm 45) symptoms and didn't perceive an effect so I stopped taking them. My migraines came back as soon as the supplement had left my system so I've been taking the isoflavones regularly ever since. No migraines. Maybe give them a go? This is what I use: Amazon link.

i used to get them quite often.
starts with a numb mount, hand! and then slowly my vision just goes really blurred. only get a slight headache, but lose spacial awareness.
horrid. seems (touch wood) to have got less frequent since I have had the menopause.

Even when you know what it is, it's a really unsettling experience when your vision gradually blurs away to nothing except squiggles and zigzags.

Reading your symptoms was as if I was describing my own! I used to get these migraines so regularly as a teenager that I used to be able to tell by the pattern of the blindspot and shape of the flashing zigzag how severe they would be. Then as I aged they lessened and I rarely had them. But now, in my late 40s they have struck again, though thankfully not too regularly. So am convinced it is linked to hormones.
I do however have a remedy that works for me (though not for many others). I use 2 pink migraleve tablets as soon as I notice the numbness, and/or as soon as I notice a blindspot developing. When I was younger, these pills used to shorten the migraine, though was often left with a thumping headache. However more recently I have found that taking these pills dramatically halts the migraine! I can literally feel well again in approx an hour. I can see the zigzag move quickly out of my line of vision, eyesight restored, and sometimes not even get a headache. The key though is to take those pink tablets very quickly once you sense an onset. I always have those pills with me everywhere now!

I used to suffer really badly throughout my 20s. I had the full works; the aura, lack of vision, vomiting and blinding pain. I used to carry Migraleve around with me. I was triggered by stress, the cold, chocolate and cheese.

I got to my 30s and they tailed off. I've now only had one very rarely. Hopefully yours will go as your hormones reduce.

Urgh! I got another at 4.30 this afternoon, not sure if I have ever had two in a day which is a bit disconcerting.
JamieFrasersBigSwingimgKilt I will definitely try those, willing to try anything.
sonsmum wil get some in thank you
Thanks all for the tips

I really recommend the National Migraine Centre @ImaHogg They are a charity and ask for a donation to cover the cost of appointments (£240 for the initial consultation, £160 for follow up appointments) but most private healthcare policies will cover the cost. The donation is waived if you are on a low income and can't afford it. You don't need a GP referral unless your health insurance provider requires it. Their website has really good resources too. I found magnesium supplements really helped, there is info about dosage on their site (and feverfew, riboflavin etc).

www.nationalmigrainecentre.org.uk/

@ImaHogg My visual aura is exactly as you describe. Mine originally started when under stress studying for my A Levels, but now they are triggered by flashes of sunlight, which is all the bloody time in the summer! Once the aura disappears I will have about one before the word finding problems start and the Excruciating headache start. I will have to find darkness and will need to sleep to try and escape the pain.

I have found a solution to the headache, which is to take 2 co-codamol as soon as I get the aura...however I don’t anymore as the stabbing stomach pain I get from Co-codamol is not worth it (though both types of pain are as excruciating as each other, so no point in taking the tablets).

Yep - I get them exactly as described, sometimes the splitting headache follows, sometimes not. They're not pleasant. Propranolol has reduced the frequency fortunately.

Very occasionally. Dont think ive had one in 18 months.

No trigger, just happens.

Another vote here for sumatriptan. You can get it from Boots pharmacy as Migraleve. If you take the pink tablets in time it can ward off the worst.

Oh I hear you all, the aura, the numbness and the aphasia! Mine seem to be hormone linked, I'll go months without then all of a sudden have one a month for a while which I'm blaming on perimenopause at the moment. I've had to explain to my workmates that they just need to leave me alone for 30 mins and I'll be fine. Caffeine and sugar work for me so 4 spoons of instant coffee and 4 of sugar in as little water as possible and down in one.

I get them like that except the visual disturbance is more limited, but I also get aphasia, which is really inconvenient. I can’t talk or read or dial a phone. Now I sometimes get the headache, sometimes only the aura.
For anyone who gets them after eating chocolate, it’s often not that the chocolate is causing them, it’s that the craving for chocolate is the first part of the aura.
All triptans work for me, migraleve, maxalt, zomig. Definitely worth going to the gp again until something works. I used to have them every 4 days and was offered prophylaxis for that, but while I was considering it they suddenly stopped for two years.

I don't know what type I get as the vision disturbance is hard to describe, they are really odd. I only get it in my right eye, and there's a straight line down the middle with only the right half blurred. Its like static and its like I can hear it with an aural hallucination that side. I get the nausea, numb face and tingling scalp.

I've had them exactly as you describe for most of my life. Once the visual symptoms subside I have a lull for about 20mins then the most horrible headache I've experienced, and this will inevitably lead to nausea and vomiting. When pregnant I had them more frequently, when pregnant with twins they were more than monthly I think so I do think it must be linked to hormones. However I have had them when stressed (had one last week for the first time in a few years actually and I know it was due to stress) So sometimes I think maybe it's blood pressure spikes?
I've never tried migraleve but I'll probably get some for next time to try, however I can never predict them, and its usually every couple of years. The only thing I discovered to help was to go fully to sleep before the headache struck, as early on as possible. I remember staving one off in 6th form once by putting my head down in a quiet corner of the library! I can only have been asleep for 10 minutes but it did the trick.

I have had them since I was a teenager..found I didn't get them when I was pregnant (with each of my 3 children) so I asked for the progesterone only pill ( can't take the combined pill) and now I don't get them anymore. Guess it's different for you but it changed my life for the better. I was terrified every day of getting one while driving because I am blinded by the aura. I hope you find a solution, they are so debilitating and other people don't realise..not even the doctors.

I got them when I was younger. Once had a really spectacular 3D one, like fairground rides swirling around me. They stopped when I really ramped up the green veg in my diet.

Haven't read the full thread, but I have found that if you give yourself a really hard massage with the tips of all 10 fingers at the top of your neck (back of your head, above your nape) at the very first signs, it can help reduce the migraines.

I'm 51 and have been getting aura migraine for 35 years. Mine are triggered by the combination of stress and irregular sleep. I'm also very sensitive to light.

Sumitriptan (on prescription) or Migraleve does nothing for me at all. However, my GP now prescribes me 10mg of amitriptyline daily as migraine/pain prevention and it's made a HUGE difference. I rarely get migraines now despite working in a very stressful, high pressure job and my sleep being all over the place.

Yes I get them and hate them. Very scary.

Do seem to be triggered by bright light often.

That's scary if it's true about strokes! Even more reason for me to keep healthy!!

In the olden days when I was young, I had to let my teacher know as soon as I got the flashing vision, although thinking about it now, I had a strange feeling of being on autopilot for quite a while before that.
There was then a series of strategies to try and get me home before the sickness started, because that was bad, and I was usually in the headmasters car when it struck.