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.

My dc15 gets them, has done for around 3yrs now. He has sumatriptan nasal spray and anti sickness buccal tablets.

Recently they have stopped working and we’ve had to wait around 6wks for the GP to contact paeds and ask for advice, dc is 16 this week so is at that in between bit where a child dose is becoming ineffective and he’s too young for an adult dose. They basically prescribed him a different nasal spray, which you take as soon as you get the Aura like the previous one, but this one can be taken a second time if it’s not resolved in 2hrs. They also want to start him on a beta blocker medicine that he will need to take every day to try and prevent them, with this yr being an important one because of GCSEs.

I feel bad for him as he feels terrible when he gets one, his first symptom is the visual disturbance, then quickly after his arms go weak and tingly, then the nausea and migraine starts. If he doesn’t take his anti sickness he just repeatedly throws up until he takes it.

Awful to watch when you give him the m,ax dose of everything and there’s nothing more to give him.

@snowballer

Yes I get them. After an initial panic with my first (thought I was going blind- exactly as you describe with patches of missing sight) I actually find the aura quite useful as if I take co-codamol the minute I realise the aura has started, I can stop the migraine developing. Without the aura I wouldn't get the pre-warning. No idea if this would work for others but it's never failed for me.

This is exactly how I respond, i take a cocodamol the instant I notice the aura. If I don't, by the time the aura has expanded 'past' my vision, I get a migraine.

I do - only occasionally since I started taking propranolol but still get a few a year. They were scary initially, but these days I kind of experience them with a sense of curiosity rather than fear, but I completely understand how for some they could trigger panic and anxiety; having your vision occluded/distorted/removed is frightening! Your explanation on what happens is pretty spot on, sometimes I get the headache afterwards, sometimes as soon as the aura symptoms start, sometimes it's just the aura.

Yes, they are relatively common. There is a whole class of medications out there to treat migraine called “triptans”, and the likelihood is that at least one of them will help you.

It will help you hugely to work out the trigger for them. At different times in my life triggers have been things like relaxing after a stressful event eg day after exams finish and a very disturbed nights sleep. My dad got them if he skipped breakfast.

I got them far more frequently in my teens and then when I started peri menopause so for me I think hormones played an important underlying role. The auras can be disturbing but they’re not sinister or anything to be feared.

Yes I get these. When one starts I have to let it run its course so I have had to cancel plans or pull over into a service station once. The doctor's have never been particularly alarmed but if yours are increasing a basic check on blood pressure, heart rate, oxygen saturation maybe blood tests on various levels or blood sugar wouldn't be a bad idea to exclude any other health issue. The person most interested has been an optician but they've never spotted anything off either.

You've described mine exactly OP and I've had them on and off for over 50 years. I sometimes feel panicky when the aura starts and I read that the fear is actually one of the known symptoms so I don't let it worry me now.
Mine sometimes come in clusters but I can go for months between them and I rarely get headaches with them. I even woke up with one during the night recently! Mine are definitely triggered by stress which is a bit hard to avoid!
If your GP isn't concerned about them perhaps you could learn some relaxation techniques and try those when you feel one coming on?

Thank you all so much. So sorry you all suffer too but you’ve all put my mind at ease. You would have thought I would have become more accustomed to them after all these years but I think I am in perimenopause and with everything else it’s just compounded my health fears.
makingmiracles My 16 ds started getting them last year too. He had one just last week and I had to pick him up from school as he couldn’t see the teacher!

Your description is exactly what I have suffered since I was 12. I am now 65 and hardly ever have migraines. They stopped largely when I went through the menopause. I don’t think they are anything to do with your eyes, but are triggered in the brain and are very common.

Please try not to feel terrified. I take myself off to a darkened room and wait them out. I don’t know about medication as it will have moved on since I took anything, but I know that some people will have helpful tips.

I have EXACTLY this. Not often and definitely hormone related as got more during peri- and menopause. I also (apparently) talk nonsense although I think what I am saying makes absolute sense! Had a migraine come on once whilst teaching and a day or so later one of the kids told me they were all really worried about me as they had no clue what I was saying!🤦🏼‍♀️
Sometimes get the headache. Sleep and Co-codamol usually clear it up after 24 hours.

Mine always follow the same pattern. The blind spot, the zig zag lines then the headache. The headache moves, it can be over one eye or at the back of the head but I always get the headache

@Twoweekcruise - I’m surprised your doctor isn’t concerned, tbh… Are you aware that you should not be taking any kind of oral contraceptive if you have migraines with auras? They increase your stroke risk exponentially. I have had them for years. They got worse and worse the closer I got to menopause. Turns out they’re not unrelated to strokes and epilepsy. My brain is full of tiny scars which means that my stroke risk is massively elevated and am now on an anti-seizure medication (Topiramate) that has pretty blah side-effects, but has almost stopped them buggers.

Your description is exactly how I experience them too. I kept a complete food diary for a whole year (literally everything I ate or drank) and it didn't help find a trigger, but I leaned that I crave white carbs after a migraine.
They were at their worst when I was pregnant, breastfeeding, losing weight or stressed.
I started taking vitamin B, D and Magnesium every day about 6 months ago and haven't had one - when I used to get them once a month.

Could be worth a try?

I get these too, mine are triggered by dehydration and low blood sugar. Last about 30 minutes, then I'm a bit meh for a few hours but basically OK. These days I can feel them coming on most of the time and eating and drinking stops them develping fully.

I used to get exactly what you've described there @Twoweekcruise. They started when I was 16 and I never did find out what triggered them. I was prescribed a triptan for them and carried one on me at all times.

I developed high blood pressure 5 years ago and was prescribed Amlodipine and haven't had a migraine since. Obviously it's not prescribed for migraine but a quick Google shows that it can prevent them.

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.

Had them since age 25…also have a range of other health conditions too- mostly inflammatory related and knock ons.
Doctor not that bothered. I have them once or twice a year

Me too hate it😩

Yes, you have described mine to a tee

I got my 1st one in pregnancy 20+ years ago and thought I was having a brain haemorrhage !

Since then, I have had them when stressed, when dehydrated, around periods and after watching a flickering screen. At one time I was getting several a week so I was sent for a brain MRI scan which was normal.

Since the menopause arrived I have fewer of the hormone-related ones but still have the occasional stress/dehydration attack.

I don’t take any medication… I don’t see the point as I cannot predict when they are coming and are done and dusted in half an hour. My workplace know about it so I just go and lie in a quiet room for a while and carry on. If I am driving, I get a few minutes to pull over before my vision is too bad. Thankfully they have never happened on a motorway between junctions.

I get them, have done for years. I don't have a headache but will feel a bit "washed out" afterwards. Sometimes I do feel nauseous after one but it doesn't last long. There doesn't seem to be a trigger for mine, they just come on randomly and last about 15 minutes.

@snowballer

Yes I get them. After an initial panic with my first (thought I was going blind- exactly as you describe with patches of missing sight) I actually find the aura quite useful as if I take co-codamol the minute I realise the aura has started, I can stop the migraine developing. Without the aura I wouldn't get the pre-warning. No idea if this would work for others but it's never failed for me.

This is me exactly. Had my first one at 14 at school, and they have waxed and waned over the years as my hormonal problems have been better and worse. Now in perimenopause I am having them a lot but the aura is a helpful warning and I take Migraleve (same as cocodamol but with an anti sickness drug combined) as soon as they start. The hangover is worse the next day if I leave it too long before taking the meds.

They are horrible, but manageable once you know what they are.

Yes I get these occasionally and have to lie down and close my eyes until they pass. No advice I'm afraid but following to see if anyone else has any

Mine are triggered by stress, dry eyes, and too much alcohol. Starts with not being able to focus without feeling like I'm going to pass out. My brain feels hot and almost like it's shortening out. I lose coordination, I can't feel my arms, and I can't talk properly. I've found taking Migraleve works well for me. I also put something cold on the back of my head and then try and sleep. I used to get panic attacks at first when I didn't realise what was happening.. thought it was a stroke. Anyway, as I say.. maybe try Migraleve?

[quote Justilou1]@Twoweekcruise - I’m surprised your doctor isn’t concerned, tbh… Are you aware that you should not be taking any kind of oral contraceptive if you have migraines with auras? They increase your stroke risk exponentially. I have had them for years. They got worse and worse the closer I got to menopause. Turns out they’re not unrelated to strokes and epilepsy. My brain is full of tiny scars which means that my stroke risk is massively elevated and am now on an anti-seizure medication (Topiramate) that has pretty blah side-effects, but has almost stopped them buggers.[/quote]
I have never been on hormonal contraceptives because of this. The gp doesn’t seemed concerned but I have read there is a risk of stroke if you suffer from aura migraines. We have strokes within the family and even though the risk between aura and strokes are still relatively low I was never prepared to take the risk.
I am interest in the damage that auras may potentially cause the brain. My mum has had auras for almost 50 years and now has Alzheimer’s. I can not find a studied connection between the two but it is something which concerns me.

2typesofjungle I do already take B and D vitamins and went 8 months without an aura when I first started taking them but they’ve come back this year. I have heard of the massive benefits in magnesium, I definitely need to try some.

I had my first one when I was about 9 - they were at their worst during puberty, down to once a month (day five of period); got more frequent in pregnancy; and then pretty much stopped when I got the Mirena as my periods stopped, so I think they are definitely hormonal for me.

I have a couple of food triggers - pork, coffee and oranges. The other normal food triggers such as cheese and chocolate don't affect me.

Bright / flickering / flashing lights and low winter sun are also triggers so I tend to wear sunglasses year round.

I find taking sumatriptan as soon as the aura starts will stop me from getting the headache so badly but leave me feeling a bit brain fogged. If I can't take a tablet in time then I end up unable to take anything as I am vomiting constantly and just have to lie down in a dark and quiet room until it passes.

to all sufferers, it is shit.