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I Don’t Want to Feel Alone

… so I’m wriring my story.

I’m a 28 yo woman and I’ve been having migraines since I was 16 or 17. My mom said it was genetic, since she and her mother always had them around those days of the month. And they were nearly debilitating, just like mine. At around 19, she took me to do a CT (came up ok), check my eye pressure, sight, thyroid and whatnot… it was all clear. And yet I still struggle with it, once or twice every month, for a few days, for the past twelve years. During that time I developed a generalized anxiety disorder that made me even more concerned about the migraines. It didn’t help that, every time someone I told about them, went: oh wow… you should look into that, get a CT, that’s not good. Even though I had done it, and it came up clear, I’d start to panic and my anxiety worsened. No one I know has this. No one I know has ever had a migraine before, and it scares me to death. It’s lonely.

Which is why I’m grateful for a site like this. It makes me feel like my migraines are not a sign of a ten-year growing tumor. Just something bothersome I have to live with.

Whoever read my story in its entirety… thank you. And I wish you all the strength in your own battle with migraine.

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

  • shazb123
    1 month ago

    Hi I am 39 years old I don’t know if it’s migraines I have but my doctor Seems to think it is I get these pains in different parts of my head the pain is not bad that I have to take pain killers but you know it’s there I get a numbness down the left side of my face arm and leg sometimes it goes to the other arm get a funny felling on my right eye and eyebrow and my lip had anyone else had anything like this ???

  • shazb123
    1 month ago

    Oh I forgot to say I get it every day

  • ReneeG
    1 month ago

    Learning about the MTHFR (Methylenetetrahyrofolate Reductase) gene variation has been the saving grace for the migraine sufferers in my family. Seven people, ranging in age from 13 to 75, have experienced a dramatic decrease in migraines since supplementing with a Methyl Vitamin B Complex containing folate (Vitamin B9). Also critical to our health, is avoiding folic acid (synthetic Vitamin B9). People who have MTHFR cannot convert folic acid into folate. It’s been an incredible discovery!

  • Ellen H
    2 months ago

    Dear Sens, It is lonely. No matter how hard you try, no one seems to get it. It’s genetic. And just because someone else “got rid” of their migraines, it doesn’t mean you will be so lucky. And people don’t get that either. One person, years ago, shot me an email that was loaded with a nine point program to get rid of my migraines. Just reading that email felt like I was being attacked with a knife. I do not correspond with her anymore. Let’s try to build a safe place on migraine.com so the lonely people will have a place to go and know that they will be understood. Take care. And my name is Ellen.

  • l1rwdn
    2 months ago

    I am an episodic migraineur with 3-5 migraines on average per month. What I do to cope is to think about how grateful I am that things could be so much worse.

  • kellikens
    2 months ago

    Hang in there. I suffer from chronic migraines and no one understands. If I hear “oh, just take some Tylenol” one more time, well I’m sure I’ll lose my mind!

  • drmadden
    2 months ago

    I think it does help to hear about others with this disease. But I still hate to tell an employer I have migraine, and I fear I will lose another job over it. I had no migraine for about the last 3 years, (i stopped having periods about 5 years ago) and had hoped they were gone for good. Then after an injury, I needed pain relief and took Tramadol 3 times a day for a few weeks. The week I was tapering down, I woke up at 5 a.m. with flashing lights aura and about a half hour later hit with severe pain and nausea. I’ve had 3 more in the past 2 months and my specialist told me the Tramadol use brought them back. How could I have known? What have I done to myself? Now I fear the future, as I age my body aches and I will need more pain relief but nothing is worth the migraines returning. I’m frightened. So I really understand how it feels.

  • HelenW.
    3 months ago

    I am 71 years old. I have been a Migraine sufferer since I was about 13 years old. That’s when I had my first Migraine. They have been chronic for about 5 years, and have become daily for about the past 4 years. I certainly can relate to what I am hearing and desperately am searching for relief. Taking Imitrex, which is the only med that helps. Am taking 1/2 pill a day. Trying to take the least amt possible. My neurologist is talking about AIMOVIG. I don’t know if it will help, but am willing to try.

  • ladymet117
    3 months ago

    Sens, you don’t have to feel alone! Everyone at some point feels that they are alone with their struggle with this disease, I know I did until I found this site! By reading everyone’s story, it tells you how they are coping with things. It also tells you some things that helped them that may just help you! Hang in there! We’re all in this together!

  • Prydzopolis
    3 months ago

    Don’t worry you aren’t alone:
    – I get anxious whenever I get into a situation when I might get a migraine
    – Every person I meet always asks me if I had checked this or tried that
    – Am 32, has them for 10 years

    Keep on fighting 🙂

  • Sens author
    3 months ago

    Hey, prydz!

    So glad to hear people can relate.
    Do you have any advice? Less on managing the pain, and more on the fear around the migraine attack.

    Thanks for the reply!

  • MaryMc
    4 months ago

    You’re definitely not alone! I used to feel very alone because I thought no one else had such a resistive-to-treatment migraine. I’ve had chronic daily migraines since a bout of encephalitis in 1987. Over 30 years living much alone even tho I have a large family and a partner, makes me appreciate sites like this where others can really relate to you and your story. Although I haven’t found a cure yet, Never give up hope that you’ll find a treatment that works! Hang in there!

  • drmadden
    2 months ago

    I am glad to hear/meet someone else who has had encephalitis. I’ve had migraine since I was in my teens, am now 64. I had Encephalitis (viral) when I was 27, and that just added to the “joy” of it all…sigh.

  • dlg
    2 months ago

    I have never had encephalitis, but I did have viral meningitis in 2017. I have had migraines since age of 19 (now 56). But, I have noticed since the meningitis, the are more frequent. They don’t reach the level 10 pain and usually only last about a day, but I get them weekly. I also seem to have at least one or more pre-dome symptoms almost daily. As it has been said before, all we can do is hope and hang in there.

  • Sens author
    3 months ago

    Hey, Mary!

    Thank you so much for taking the time to read and reply. I can’t even begin to imagine 30 years of migraines. But then again, my past ten or so seem to have flown by, now that I look back on it.

    How do you manage your day-to-day, then? Do they at least get manageable enough so you can go about work and family?

    Knowing the pain we’re all experiencing… it’s admirable how you’re pushing through. I hope you soon find something that works.

  • Holly Baddour moderator
    4 months ago

    Hi Sens!

    You’re not alone. And I’m so glad you shared. What you wrote, about being scared that your migraine disease is a signal of something worse, reminded me of something I went through recently, when I actually found myself hoping for something concrete, like a tumor, that could be addressed. This, because migraine doesn’t have a fix. It’s just a complex neurological disease we have to manage day after day. But it does help to get through it when we relate and connect with one another.
    https://migraine.com/living-migraine/not-a-nose-tumor/

    Please stay in touch. So glad you’re a part of our community!

  • Sens author
    3 months ago

    Thank you for the reply. It’s been tough two weeks for my anxiety, and consequently, my migraine fear worsened.

    But I’m working on it.

    Like you said, it’s just a matter of accepting that we’re living with a complex illness, and working on managing it. Thank you, Holly.

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