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Living With The Pain When Nothing Helps

My migraines began at age 19 with a worst-case scenario migraine that put me in the Emergency Room: a terrible pain on one side of my forehead, partial blindness, flashing lightning bolts in my field of vision, partial paralysis of my limbs, and the loss of the ability to form words (I could think clearly, but the words came out as complete gibberish). When I got to the ER, since I couldn’t speak, I couldn’t tell them what was wrong. They thought I was hemorrhaging in the brain. I was all alone; my entire family was hours away with my mother who was undergoing an organ transplant; I was so afraid. Apparently, I went through a Spinal Tap, which I was told would be very painful, but I didn’t feel a thing; all I felt was the terrible pain in my head. Long story short, after all kinds of tests, it was eventually diagnosed as a migraine with aura. Both my parents get them so I guess it wasn’t much of a surprise.

Migraine Awareness MonthSince then, I have only had 2 migraines THAT bad that required medical attention. I will say it didn’t help much though; even Morphine in the ER didn’t help. I do have to carry a little card with me now that says, “I am experiencing a migraine with aura” for when I can’t speak. I didn’t like the $30,000 medical bills that came along with MRI’s and such when yet again the medical staff thought I was having a stroke because I couldn’t speak!

I am 40 years old now. I have been through periods in my life where I had migraines weekly, monthly, and on the lucky years, maybe only 2 or 3 per year. Lately though, they are occurring more frequently again. I don’t have any forewarning symptoms; the aura hits out of nowhere about 20 minutes before the actual headache, usually with dizziness and partial blindness and flashing lights that last for anywhere between 20 minutes to 2 hours. I hate that part — the vision loss is really scary. My migraine headaches aren’t as bad as they used to be, but they still affect my life, especially my job. I am an accountant and losing your vision isn’t a good thing! The headache usually hangs on for a couple days, although not as bad as the first day, and I am very much sensitive to light and sound, and even strong scents such as soaps or perfume. Migraine meds don’t work for me. I was on daily blood pressure meds for a while as a preemptive course of treatment, but I went off those because they didn’t seem to be helping. I have never been able to identify any triggers. Mostly, I just have to suffer through it.

I have learned to live with migraines, but it makes life hard sometimes. Any weird thing with my vision and I freak out thinking I am about to have a migraine. I always worry about when the next BIG one will hit; the ones that put me in the hospital. I am always worried about traveling, and I worry every day at work that my vision will go and I will have to miss work yet again. It is a terrible way to live. I have read that, for many people, migraines lessen or go away after age 50. I don’t know if it’s true, but I am hoping.

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

  • Douglas
    3 years ago

    The constant fear of when the next major attack will hit can be daunting. I am lucky to not have pain with my migraines but…
    I have familial hemiplegic migraines, so the symptoms I have are the same as a stroke (similar to what you experienced). I carry my day-timer with me so that I have my medication list, list of implants and devices, an a brief medical history (listing my medical conditions). Unfortunately I have had a stroke and several TIAs making distinction between a migraine and a TIA/stroke difficult if no one else witnessed the onset.
    My advice, keep carrying your card, but add a brief history and medication list.

  • Michele Rupp
    3 years ago

    Hi,
    I want to thank you for your story. It makes me feel like I’m not alone in my battle. I have suffered since I was 18 years old and I get slurred speech like someone that has been drinking and my eye swells shut. It so hard to not feel lost when nothing helps. I really do hope that migraines lessen as we get older. I hope that things will level out for you.

  • Meaghan Coneys moderator
    3 years ago

    Hi Michele Rupp – thank you for your comment. We are so happy you are a part of our community and can identify and relate to our articles. We are definitely here to support you. You mentioned experiencing slurred speech and eye swelling. I thought you would be interested in the following articles. Perhaps you could identify as they discuss others’ experiences with chronic migraine affecting their language and speech and eye swelling – https://migraine.com/blog/migraine-symptoms-transient-aphasia/, https://migraine.com/blog/what-does-aphasia-feel-like/, https://migraine.com/blog/puffy-eyes-and-the-changing-face/, https://migraine.com/migraine-symptoms/puffy-eyelid/. Hopefully you find them interesting. Please continue to reach out whenever needed. Wishing you all the best. Warmly, Meaghan (Migraine.com Team)

  • Heather Benton
    5 years ago

    You story is very similar to mine! Especially the speaking part, which I fine embarrassing. (no one would image that from a migraine one would not be able to speak a normal sentence) I have Chronic Daily Migraine now, after of 35 years of having them. So my life is one migraine it is just how much it affects me and how long I can function. One tends to learn to live with great pain and still push through it. You would think that after this long people in my life would be in tune with what MIGRAINES ARE REALLY ALL ABOUT, not so!
    Hope you can continue to only have one 2 or three a year! Even if its 2 or 3 to many.

  • Nancy Harris Bonk moderator
    7 years ago

    Thank you for sharing your story with us, you are in good company. Migraines in themselves are extremely draining, but worrying about them all the time, as many of us do, is exhausting.

    You mentioned that you haven’t been able to figure out what any of your triggers are. Have you tried keeping a migraine journal recently? It may be worthwhile to try it again because just like our migraines, triggers can change over time too. There are so many good apps (to use for a migraine diary) for our phones and pc’s we’re surely able to find one that is right for us. Migraine.com’s Migraine Meter is one place to start if you are interested, https://migraine.com/wp-admin/edit-comments.php

  • cancan
    7 years ago

    To Syeera, First of all, Bless You for putting up with and coping with migraines!!!
    I enjoyed your story and sympathize with you in all areas that you suffer, I feel your pain, large or small!
    Your last sentence caught my eye, I pray that as you get older the headaches do, indeed, diminish….or at least lessen. But do not be surprised if they don’t. I have had migraines since 8 years old, I am now 73. I continue to have, many times daily, the most horrible, intense, debillitating, break-through migraines, one who has been through it all, believe me! I have yet to write my story on here, 65 years of migraines …you can imagine how I would have to condense my story! I have written my several page history and take it with me at each “new” doctor visit, always looking for a doctor specialist to help me, and leaving my “story” behind as I leave! But I just had to write you and tell you, you do a wonderful job of taking care of yourself….you have lots of courage, that’s what counts being a migrainer. My very best to you….CanCan

  • Nancy Harris Bonk moderator
    7 years ago

    Hi CanCan,

    Thanks for those words of encouragement and sharing your story.

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