Migraine aura unable to cope

Posted , 22 users are following.

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.

2 likes, 105 replies

105 Replies

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  • Posted

    hi staci, how are you going with your auras?

    ive recently had mine return and im very upset as i managed to avoid them for 18 months. have you found any relief?

    • Posted

      Hello!

      When I was 43, I had my first one in Oct. 2018. I had two more in the following days. Then, I had one in Dec. 19. So, four total. I have had all sorts of crazy vision related issues ever since the first one. I'm sorry you are going through this now. They frighten me!! xo

    • Posted

      thats good that youve only had 4 though! do you do anything to prevent them now?

    • Posted

      I have no idea what causes them, so I don't know how to prevent them. I'm sorry! I would assume mine have something to do with being in perimenopause. My neurologist said that he sees lots of women my age for the first time. How old are you?

    • Posted

      Im 33 and they started 3 years ago. I have a feeling mine are also hormone related. Ive read alot about them starting later in life. They suck. Im glad youre learning to live with them. its the unpredictability of them that scares me.

    • Posted

      I would not say I am learning to live with them. I have lots of vision issues and have anxiety/panic every day about it. It sucks. It ruined my life. Feel free to message me anytime!

  • Posted

    Dear Staci. I would like to know how you are getting on? I have had three silent migraines with auras this week and they have traumatized me. It feels as if my body is out of control. I relate to everything you say and I have been so reassured by your posts because it shows me that other people experience this too and feel the same way. With love, Julie

  • Edited

    Hello everybody,

    I started having migraines with auras about 15 years ago, i am turning 41 next month. At first they had been very rare and I managed them so lightly. I only had visual auras back then, nothing numbness or prolonged headaches afterwards. I gave birth to my son when I was 30, and my hormones went crazy. After birth my stress levels were extremely high, and although I have been battling with anxiety and panic syndrome the more part of my life, the migrane attacks have become more intense when I had became responsible for my son's life.

    I am in psychotherapy for over 10 years now, and about 2 years ago I decided to take it bloody seriously. Oh my I was so so arrogant before, shame on me. Digging deeper on my sessions the more various migrane symptoms occur. First i had vertigo for about an hour before the headache (thank God I am never having very painful headaches), last I was having an attack in the water park where I brought my son to and after some peripheral vision loss I just couldn't speak the correct words and sentences i've wished to. I thought I was having a stroke so an ambulance was called and all my bloodworks, test and CT scan results came back normal. my migraines now last for 2-3 days and are always come with an aura. I am having a MRI on January.

    Here are my experiences and thoughts:

    1. My mother was battling with aura migranes, doctors said it could be hereditary.
    2. One of my very first symptoms (when i was around 20) was that I couldn't look straight ahead while walking on paving blocks as they seemed like forming a straight 'line' which bothered my vision.
    3. I cannot drive at night or at twilight, nor I like walks as I have a sensation that I don't see anything and I can't focus my eyes for too long.
    4. Stress, anxiety and unprocessed emotions make it more severe just as too many or too less sleep, caffeine and some foods (chocolate, cheese, nuts). I feel like my menopause have begun (mother started at an early age of 39) and my hormonal roller coaster is having a huge impact on it as well. I'm always having bad anxiety and/or panic attacks when auras start and they last for almost a day after them.
    5. I can't stand loudness in any form, not only whilst migrane attacks, but never.
    6. I cannot go anywhere without sunglasses, even winter, too bright or flickering lights are very triggering for me.
    7. Since needing reading glasses and spending way too much time in front of screens, my vision is just not the same anymore. I see, but I can't see the way I used to. Ugh it is so hard to explain.
    8. Because of my anxiety, the muscles in my neck and shoulders are always so stiff which is totally unconsciuos of me, I've noticed it also make my migraines worse and more frequent.
    9. I can't stand patterns like striped and dotted walls.

      Sorry for my long post, hope to find someone with similarities.

      Best wishes to you all,

      Angela

  • Posted

    Hi everyone. It's comforting to hear all of your testimonies and experiences with this terrifying condition. Thank you for sharing!

    I'm pretty new at having these Migraine with Auras. Experienced my first one in 2021. It started with rainbow dancing zig/zag like in center of eye, slowly moving across. Then lost partial vision in left eye, thought I was gonna go blind. Lasted about 20mins. Massive Migraine after.

    My second one happened 16months after the 1st one. No loss of vision, just rainbow zig-zag. Approx. 20mins long. Migraine after.

    Had a third one today....couple weeks after the 2nd one. Zig-zags and migraine after.

    It's nerve racking that #2 and #3 are so close together.

    I am 32 years old. I have a son. I stress out alot, I have horrible posture that always causes headaches. I have an iud as birth control which causes me to have no periods. My family has a history of migraines. I think all these factors may cause the Auras.

  • Posted

    My aura is the same. starts out small and gets bigger and it is shaped like a C or as described by Anne below, "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 and get better sleep etc i can lessen the attacks. Lately i am associating it with depression and anxiety that i suffer from.

    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 have my 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.

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