Migraine aura unable to cope

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I am looking for ways to cope with having migraine with aura. Prior to two months ago, I never heard of a migraine with aura. I have suffered from menstrual migraine for roughly 7/8 years, but they have only consisted of intense one sided pain that would last 24 hours. I was at work on October 17th, when suddenly everything seemed too bright. Then, I developed what I have since learned is a scotoma. It slowly got larger until it turned into colorful triangles that covered my entire view. The whole episode lasted roughly 30 minutes. I was brought by ambulance to the hospital and after many tests was told it was an ocular migraine. Three days later, I woke up to a zig zag pattern which turned into a bright arch that made its way across my vision in about 20 minutes. Then, two days after the second, I had another zig zag only aura while in doctor's office waiting room. To be totally honest, I feel like I have PTSD.

I am completely traumatized by the whole experience. I know it may seem silly to some of you, but I truly had no idea what was happening to me. I thought I was fainting due to a heavy perimenopausal period. I'm not sure how to get over this fear. I send every day worrying that it will happen again. I haven't been to work since the initial incident and am on the cusp of losing my professional career. I am practically housebound and am afraid to be alone. This experience has completely changed my life.

I should also mention that my vision has been blurry/wonky ever since the aura. I am not sure if it is migraine related or due to perimenopause. All I know is that I am afraid and no one I know in real life has ever experienced an aura. I feel very alone.

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  • Posted

    Aww hunny I know there awful I am lying in bed now scared of another cause I had 1 this morning they scare me to death they take over my life. I suffer from health anxiety as it is so always worrying about something but apparently they arnt harmful and can't hurt us xx

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    • Posted

      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

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    • Posted

      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.

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    • Posted

      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

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  • Posted

    Hi Stacy,

    you describe your auras really well. I've never had a headache with migraine only the auras which have got more and more frequent as I get older.

    My main aura is the scintillating scotoma type like yours with the zigzag horseshoe moving across and lasting 20 to 30 minutes, you can get one coming straight after another so don't worry if that happens. Auras can change in type, sometimes everything goes dizzy, I can get pins and needles inside my head and pulling feeling at the side of my mouth. Sometimes it's double vision, blind spots or smells that aren't there. I got freaked by one aura that made my whole vision divide into hexagons, when I saw a doctor he said that yes it was an aura and not to worry as it will go away when it's run its course.

    I really sympathise as it's scary when a migraine changes and a lot of people just think migraine is a headache when it's a lot more complicated. I hope knowing that you're not alone will help take some of the stress away. Love from Anne. x

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    • Posted

      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

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    • Posted

      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

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    • Posted

      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?

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    • Posted

      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?

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    • Posted

      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

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    • Posted

      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

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    • Posted

      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!

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    • Posted

      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

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    • Posted

      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

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    • Posted

      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

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    • Posted

      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

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    • Posted

      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.

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    • Posted

      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!

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    • Posted

      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.

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    • Posted

      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

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    • Posted

      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.

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