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My never ending migraine

My story is long, but I will try to keep this brief.
I have had headaches for as long as I can remember and experienced my first visual aura at 12 years old.
The ‘classic’ migraines remained infrequent and the headaches although troublesome, would come in `waves` and so although uncomfortable, it was bearable and I managed to live a relatively normal life.

In my twenties things have worsened considerably where I developed something I never thought possible.. a ‘persistent migraine aura’ (PMA).
I see lights in my eyes every single day. They appear in my vision intermittently in the forms of blobs, squares, crescents, lines and shimmers, varying in colours from white and black to vibrant glowing yellow, blue and silver. This is in addition to the more `normal` pattern of a classic migraine where the lights will quickly progress into a growing flashing arc and then slowly settle down in 30-40 minutes leaving us totally washed out for a day or so. These, unpleasant as they are, at least I know are recognised, ‘normal’ in the migraine world. People can relate to them, where as this constant visual aura is a world of it’s own, where I have yet to meet anyone experiencing anything similar. Even the specialists are perplexed as to what is happening or how to treat it.
I have of course tried all the usual preventatives to no avail and sought every alternative therapy possible in a desperate bid to help this, nothing does.

The lights can and do happen without a headache, although my head is going through a bad cycle at the moment so both are happening together. Every day I wake up and feel like I’ve been hit by a bus. Drained and washed out, pained and highly distressed by these visual obscurities.
This has taken the best part of the last 10 years of my life and continues to destroy everything I try to do, every attempt to re-build the life it has taken, It’s always there, holding me back.

I have tried the whole ‘pull my socks up’ thing, after all to everyone else I seem fine, yet as much as I try and would love to ignore these defects, a thumping head and dazzling lights in the field of vision are pretty hard to ignore, never mind how unwell it all makes me feel.
So I live in this unique world, isolated from everyone around me, misunderstood and judged so wrongly. If only people knew. If only they could see for a second what I see throughout every day. Or felt the pain and exhaustion of living with this.
If anyone reading is suffering anything similar, please do reply!
It’s an absolutely awful condition to live with, made harder by the rarity and confusion of it. I would be so pleased to meet any of you with PMA to share our experiences, ideas and to hear of how others cope with this, because I am certainly struggling too.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • CSchom1008
    8 months ago

    Megs,

    I am currently experiencing this as well. I’m lost and I feel like nobody knows what to do or how to help me. It’s only been a few days now but I am growing ever so worried as to why my doctor can’t seem to help me. Hope I can chat with you or atleast someone who can also relate with me. I am even shocked I found this article!

    Thanks,

    Chelsea

  • Quirinya
    3 years ago

    I know it’s been almost a year ago, but I’d like to leave a reply anyway.

    I’ve had ‘visual snow’ most of my life. I can’t even remember when I didn’t have it. Up until yesterday I had no idea it was a rare condition. Nor did I know it could have anything to do with migraine. I don’t get headaches often (maybe once or twice a year even), nor do I experience pain. It’s just darn annoying. Therefor I didn’t have an indication it could be an illness, let alone migraine.

    Reading stories other people wrote on this subject, I began to understand certain happenings in my life. Suddenly they all made sense.

    My ‘visual snow’ is pretty much constant and persistent. It’s never not there, but it’s worse when I’m tired. I can’t really see black anymore, as it’s just like ‘dancing dark colored pixels’.
    I guess, since I’ve had it for a long time, I learned to cope with it and not be bothered by it as much as some others I read stories from. To me it’s second nature, but to those who got it later on it seems to be disrupting their lives.

    Now that I know what’s going on in my visuals, I’m considering having a doctor take a look at it. Maybe… It’s not bothering me a whole lot, but if getting a diagnosis might help me in the future to get people to understand me, it could ease up my life a little.

    I hope you’ve found a way to cope with your PMA and hopefully get rid of it completely in the future.

  • Joanna Bodner moderator
    3 years ago

    We are SO happy that this article resonated with you and that you were able to potentially put the pieces together in determining that your visual snow could be related to migraine. We would certainly encourage you to discuss this and any other possible symptoms you may be experiencing with your doctor. Let me share some information with you that may help you in preparation to do so: https://migraine.com/getting-help/prepare-docto-visit/. Thank you greatly for sharing this and especially for being part of our community! PS – It’s never too late to leave a reply to any of our articles!!
    Take care,
    Joanna (Migraine.com Team)

  • Trisha27
    4 years ago

    Thoughts and prayers are sent to you! I can only imagine your pain. I am a migraine sufferer for over 20 years and my heart goes out to you. My auras and lights can come with no headache but they go away after a few minutes. Maybe a new Neurologist or specialist, or opthamologist, in a different location would help.

  • seeclear64
    4 years ago

    I believe I understand what you are going through. I have had daily headaches for over 30 years. I was finally diagnosed in my early 20’s with Migraines, TMJ headaches and headaches coming from my neck. I cannot remember a day without a headache. I have seen soooo many doctors and tried so many meds with no relief. Percocet and Vicodin knock the pain down a tad but not enough. I try not to take them very often because they don’t really help anyway.

    I used to see flashes of light in just my right eye but now they have started in the left also. Sometimes I see just a shimmer in one eye. Other times my vision will blur. Once while I was at work the bottom right of the computer monitor just disappeared. I thought I had something wrong with my retina but the eye specialist said it was a migraine. I have even seen my pupil change shape when I was having a migraine a couple of times. I have been getting the flashes of light everyday, several times a day, now for at least eight years.

    Over the past couple of years my “Bad ones” have been coming more and more often. I used to just have a constant headache with bad ones every once in a while. Now I have the “Bad ones” more often then not.

    I also feel sick to my stomach a lot. I also get a lot of pains in my stomach.

    My head will get very sensitive sometimes the day after a real bad headache. Sometimes it will hurt in just one little place on my head for a few days after a bad one. I am also very drained and almost feel drunk after a very bad one.

    I haven’t seen a specialist about them for a long time because I just get tired of seeing doctors that offer no relief. The headaches are affecting my thinking so bad now that I cannot think straight most of the time. My memory has been bad for a long time but now it is getting so bad that I can’t even follow a mindless sitcom on TV.

    I have an appointment with a new Neuro on the 27th. Maybe this new doc will have some new tricks. I hope anyway.

    Do you ever get very cold when you are having a migraine? I do.

    I am sorry you are going through this. I hope you get better soon. Sorry for rambling on and on.

    I hope this all makes sense. I am dealing will a fairly bad one right now.

    Thanks
    Chris

  • Trisha27
    4 years ago

    Good luck to you. I can relate as a migraine sufferer for over 20 years. My auras at least go away after a while. I can imagine your frustration. I hope your new Neurologist will be able to help you!

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