Migraine aura unable to cope

How did I not know that auras existed? How do people live like this? I need to drive and work and function. It is so upsetting!

I didn't know about them either till I had 1 rang my mum freaking out thinking I was going blind that was 10 years ago and I'm still just as scared now. they say stress sleep patterns certain food sun like reflecting of things these r all meant to be triggers. I'm so fed up its Christmas soon and I have to be happy for my kids but inside I'm screaming I am so scared x

10 years! I wonder if this is my life now? I am so sad.

what is it that scares you about them x

I guess just not being in control. Or, maybe being incapacitated for 30 minutes. I definitely think the unpredictability about them. I just have to live the rest of my life knowing that it could happen at any time and without warning. What if I am driving? What if I am in work in front of students? What if I am alone and it doesn't go away or my symptoms change? I guess EVERYTHING about them scares me.

it's like listening to myself I am the same. I always worry my sight isn't going come back it always does but every time I have them that's my feet x always in fear of having another it's awful x

How many have you had in the past ten years?

omg I have no idea lovely. I have had 2 in last 4 week's b4 that I went 5 months without 1 just varies x

You are far braver than me!

I really arnt I'm always scared all the time ruins my life x

hello I suffer migraine aura aswel and I am petrified of them. I had 1 a but 4 or 5 weeks ago and yesterday morning I woke up with 1. I get the blind spots where I can only see half of someone's face or half of a word if I'm reading pluss I also get them where I can't see anything at the side of me..is this normal cause I see you describe them different I can get the flashing lights but no always. I woke up this morning looking at everything im in a constant fear of going blind. x

Hi Kimberly,

yes the seeing only half of anything you look at IS an aura, I don't get those but my partner does and he doesn't get a headache with migraine either. He says it comes on quickly and just takes half of his vision, lasts about 20 minutes.

I get a variety of aura - the little firefly lights that shoot about, the zigzag horseshoe ones that move across your vision and disappear, dizziness or double vision sometimes, my blind spot ones can be any shape but are grey with a sparkly edge (glow green when you close your eyes). Phantom smells were the weirdest. I've also had kaleidoscopic ones where the patterns change one into another and can be coloured.

Staci describes triangles across her vision, I got hexagons and that freaked me even though I'm used to auras. My eyesight has changed quite a bit over the last 2 years, I have to wear glasses to drive now and reading glasses for small print. Not sure if the changing eyesight increased my auras over that time but they've reduced recently. I get a lot of them at night. Anne x

Oh, Anne...that sounds like torture. How utterly frightening! Thank you for replying. Doctors are so nonchalant about migraine auras. They say they are harmless and expect you to just carry on with your life. How can anyone just carry on when at any moment, your whole field of vision can turn into something out of a movie. And, to know it's all happening in your brain is just so unnerving. My neurologist said he sees a lot of women my age who start to have auras and it calms down after menopause. I really hope so, although I don't get that vibe from women who are suffering.

Anne do you drive? work?

Anne,

My vision has completely changed in the past two months since the aura. I have trouble seeing small print too and I have the constant 24/7 blurry vision. It is terrible that you are suffering, but it is nice that you have a partner who has similar issues. I don't know anyone who has auras and when I describe what happened to me to people they look at me in horror like I am crazy.

When did you start having the auras?

I must have started some time in my mid twenties, I'm 48 now. At first they were really rare, maybe one a year. At some point I must have read about them as I realised what it was, otherwise I'd have been scared. They've got more frequent as I approach menopause but it varies, I have had 11 in a month but recently it's been 2 or3 only. My Mum had classic migraine i.e. headache, sickness and aura which suddenly went when she hit 60. My eldest sister had bad headache and horrendous uncontrollable vomiting where she had to get doctors out to give an injection. Think I got off lightly with the auras! She's gone through menopause and it's a lot better, hardly any attacks now.

Yes I do drive even with a zigzag aura happening because you do get used to them and learn how they work and how long they last. I work as a carer and although I have to watch myself when I have a migraine due to the brain fog they don't stop me working. Ever aura is different and personal to you, hard to believe but it will become part of you and no longer scary as it must be now being so new to you.

Anne xx

Thank you, Anne for sharing your knowledge and experience. It came to no surprise to me that you are a carer. I can tell from our brief conversation that you are kind and helpful. I suppose this is just something that I will have to live with. It does give me some hope that perhaps it is a symptom of perimenopause and that it may lessen or disappear as I transition through menopause. I will be 44 in January, so hopefully I will find some hormonal stability soon. fingers crossed

From my own family experience it seems very likely that migraine will reduce after the menopause. Until then I think the only way to cope is not to be too hard on yourself and accept that certain situations are going to be difficult with a migraine brain. One positive I got from my migraines starting was a final explanation for not being able to enjoy things as a child that children are meant to enjoy, I couldn't cope with simple merry go rounds, roller coasters out of the question! Faked illness to get out of a school trip to Alton Towers. Used to go faint all the time when I was about 10, went faint walking over a large area of herringbone block paving because of the pattern. Also terrible travel sickness as a child. Apparently all normal for someone born with a migraine brain not an actual freak as I thought I was!

o hunny it sounds awful. I didn't ha e my 1dt till I was 22 and they ruin my life in in a constant fear of another starting. I am petrified of going blind. it's ruining my life with my husband and my kids cause I'm always down crying scared right now I'm lying in bed after a row with my husband I just feel like I have no patience cause I'm so scared x

So sorry to hear that. Feeling so stressed by the auras must be horrible. Ok my auras make me feel like I've been body snatched for 3 days, they make me tired and achy and, if they're left sided they mess up my emotions but I've always felt like they're a safety valve of some kind for my brain when it can't cope any more. It feels like hitting reboot and I suppose I trust that my body must be doing it for a reason. They are strange and can be really worrying even if you're used to them but they always go when they've run their course. x

thank you so much I really wish I wasn't scared of them. I worry it will leave me blind or it's doing some damage to my brain. I feel like my husband and family r fed up of hearing it but I'm just so scared x

Please, please don't be. When I started getting a lot of auras myself I read up on everything I could to try and understand what's actually happening. The migraine sets off an electrical wave across your brain on whichever side it's going to affect. This makes your blood vessels squeeze a bit then relax as the wave goes across your visual cortex and that causes the weird vision for about 30 minutes and then the headache if you get one. So I know it won't take my vision away and I've had so many that if they were going to cause brain damage I'd know by now! I've had both hemispheres go into migraine on the same day and been ok afterwards so I trust it to go as it always does. Hope this is some help, hate to hear of you so frightened by them. x

Oh, Anne...you poor thing. I could not imagine having to deal with something like this as a child. You must have been terrified and so confused. I only started to get menstrual migraines 7/8 years ago. It was 24 hours of intense right sided pain, but that was it. You seem so calm and accepting of your situation. I'm sorry you have had to manage this condition for so long.

thank you so much for you kind words. I'm trying my best I just want to live happily for once xx

The silly thing is I wasn't terrified I thought it was normal. Only when I got older did I realise other people didn't have problems with patterns and light. Actually finally getting the auras was a relief as now I had an explanation of why I still have to iron striped shirts with my eyes closed!

I read a post some time ago from a woman who always had auras with her migraines since she was young. She just assumed that everyone who had a migraine experienced an aura. And, here I am a grown woman scared to be alone, or drive, or work because I had three of them.

The difference being that she'd always had them, had grown up with them and they were normal to her. You had got used to your migraines (which would be frightening to someone who'd never had a migraine) but then they changed to something totally unfamiliar so no wonder you were scared.

My scintillating scotoma auras are familiar to me now and are just a part of me and I'm sure the same will happen for you given time. It's a lot to get used to but you will get there. x

Yes. I suppose, in time, mine will be part of me as well. I just find it fascinating how the same event can be perceived so differently by individuals. I am very thankful for this site and for kind people who willingly share their experiences. Without caring people like you and Kimberly, my fears would be unbearable.

aww lovely least we all in the same boat x

hi anne! i know you probably wont see this but i just want to say thank you from

the bottom of my heart for all of your reassuring comments, ive been worried sick since getting these and wondered what they are, but now i see that lots of people are in the same boat , i get an aura, headache, numbness and tingling in my arm and face, and sometimes even sickness. i feel like im constantly looking over my shoulder but your comments have made me feel somewhat at ease. thanks once again, god bless you! sarah xx

Oh that's really kind, I'm glad that you feel less worried about auras, I can only imagine how it must feel to suddenly get one having never had them before. Hope they gradually reduce for you, mine seem to have lessened as I get older. Best wishes, Anne x

My aura is the same. starts out small and gets bigger and it is shaped like a C or as you described , Anne, "like a horse shoe" zigzag lines. i started having it around 11 or 12 years old (maybe tied to period) and in 65 now. But when it first started i used to get the migraine headache and nausea. i had to throwup to lessen the pain. but when i turned 50 ish or so headache is not so bad. now i just get slight headache afterwards and a bit dizzy. still trying to figure out the triggers. i find that if i eat less processed foods, soy sauce or msg, chocolate etc i can lessen the attacks. Lately i am associating it with depression and anxiety .

I’m so sorry you are now having it. its awful and debilitating but not the end of the world so don't be scared. i too havecmy ups and down about it but it seems like there are lots of people out there with it and trying to live a normal life. you are not alone we are here for you.

thank you Anne for sharing, you have literally mirrored my experiences with aura migraine. It's good to know what is happening is 'normal' to all of us! Wishing you all well ladies x