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Migraine with aura – AIWS

Besides living with migraines of my own I am a caregiver for my mom who has had migraines since the age of about 20. My sister also suffers from migraine and so does my daughter. My mother is 86 and has them more and more often now and they are becoming more complex. Mom is of above average intelligence and more coherent than most people her age. She is very organized, well-spoken and sane. Doctors (including neurologists) want to say they are tia’s or mini-strokes or whatever, but we have resigned ourselves to just being misunderstood by the medical community for the most part. I think we also have Alice in Wonderland Syndrome to an extent…(related?).

In the last few years now, my mom has “seen dead people”. Deceased members of her family have visited her and talked to her. She is fully aware that they are not really there. Vases of flowers have “appeared” on her dresser and vines have filled the upper spaces of her bedroom and covered over the doorway. She knows they are not real and shuts her eyes in hopes that they go away. Maybe this is the AIWS and not related to migraines…. but I think they are related. Her normal migraine symptoms are the numbness in the fingers, flashing lights in the vision, blind spots, the inability to speak in sentences, confusion, frustration, and I’ll add…. fear. The headache part… I will call it… a “hangaround”. Sorta like a migraine hangover that can last many days. Similar to a tsunami, the time right after the main migraine is ripe for a repeat performance if not careful to avoid any kind of trigger… bright lights or the like… could be anything really. We experience the actual headache part less frequently.

My initial migraine symptoms are sometimes the numbness in the fingers, or that spec of missing vision, glittering speck (in black, white or colors), or “after burn” (that spot of light in your vision you can get after a camera flash in your eyes) I have also experienced “pixelation” where people’s face are colorful tiles like when the digital signal on your TV is not getting good reception.

Last weekend I was walking my dog in the park and one started out of the blue. I thought I had just looked up at the sun and got “after-burn”. (I think that alot before a migraine begins) A man was walking two of the same black dogs and I was interested in the knowing the breed. I looked and looked, but I couldn’t see their heads…. only the back halves of them. Clearly, from the angle they were walking, I should have been able to see their heads as well…. oh great… a migraine. A headless migraine. By the time I reached my car… half a block, I was glad I was only 3 blocks from home. At home the ceilings seemed lower and I had that funny taste in my mouth…. migraines, for me, have a taste.

My mom takes propranalol daily for her migraines, I don’t take anything. I am not sure what my sister takes for them. I have tried a few meds, but none have been effective. I don’t have insurance right now, and I don’t want to have to worry about pre-existing conditions, so I just live with them.

I hate them, I fear them…. they make me feel defective and sad and hopeless. When I have one and people are around I get upset and don’t want anyone to know how defective I am. I would rather try to stay at work than have to open my mouth to explain my reason for going home… it may come out a bunch of gibberish! How embarrassing! I wouldn’t be able to drive anyway. I once asked a co-worker to swear she wouldn’t tell anyone I was having a migraine so I wouldn’t have to deal with questions I wouldn’t be able to answer coherently.

I am hoping to connect with others that suffer from these strange migraines.

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  • tabbycat
    1 year ago

    At last, I am able to put a name to a phenomenon that terrified me between the ages of 11 and 14.

    I clearly recall the first time it ever happened. It was September 1969 and I had just started grammar school and hated it. I woke up at around 11pm one night and felt that the room was moving. If I moved any part of my body, the sensation grew worse. My hearing was distorted and, although I managed to make my way downstairs, my parents obviously didn’t understand what was happening because I couldn’t describe it to them
    This awful phenomenon occurred every few weeks, almost always at night when I woke from sleep. I’d go tearing into my parents’ bedroom, demanding that they talk to me because that made it go away.

    It once occurred as I was walking to school. The sound of the traffic was distorted completely and I remember leaning against a wall, trying not to panic, until it went away.

    At one point, my mother took me to see the doctor who asked me to describe what was happening. All I could say was that it felt as though time and space were distorted. She was totally bewildered, said she thought I was too highly strung and would grow out of it. Apparently, she was correct! After the age of 14, I never experienced it again but have always lived in fear that, one day, it might return. It seems that this syndrome tends to affect children and young people, so hopefully I can breathe a sigh of relief and it will never bother me again.

  • Margaret Snyder Nagy
    7 years ago

    I just got diagnosed with AIWS and am looking for anyone to share their experiences. I have been getting migraines that last for 4 days and then I’m good for a couple and then another couple of days with Migraines. What is other people doing for this?

  • Meghan Lytle
    8 years ago

    I’ve suffered from the Alice in Wonderland Syndrome for years and would like to find a support group for this for the people dealing with it and how to get over it.

  • Chave D Sladia
    8 years ago

    CADASIL is a genetic disorder. Many who suffer from have recurrent migraines.

  • Janet
    8 years ago

    danya, my name is janet and i have been suffering with migraines for 35 years. my first was at 20 years old. i, too, fear the migraines because along with the tingling, numbness, aura, confusion, when you try to think you can’t. people think your drunk or on drugs when it’s the migraine. then of course if you’re at home and take your meds, you’re completely a waste. sometimes for days. mine have come and gone over the years, but for the past 7 years they will not leave me alone. i have been on so many preventatives i lost count. i have just been started on lamictal…it is only day 7 and i have had a migraine 5 of the 7 days. one had me in bed for 2. my husband feels helpless. i pray alot and for some reason this is a trial i must face until God relieves my pain. right now God is my answer and i truly pray so much that i can just have a day where i can be a wife and a mom. i had no idea about this website until a month ago..but too much computer is a horrible trigger for me. that’s how it all work. i hope someday there will be a cure. for me….i keep praying and i know i am not alone.

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