What’s Your Secret: First Migraine Story

By Holly Harding

1 min read

In this What's Your Secret video, Holly shares her first migraine attack story and invites the rest of the community to follow suit. Do you remember your first migraine attack? What happened? How did others respond? How long after that until you were diagnosed?

Please share your story in the comment section below so that we can connect and learn from one another.

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.

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sismo Member
My first migraine was 26 years ago. I had been sick for weeks with a cold that I couldn't shake. The cold became acute again with a new strength just as we were moving into a new home at the end of the year. (Thank God for my sister- in- law who helped me pack my kitchen! ) A few days later, I woke up "feeling like I have an axe in my face". (This is a direct quote of what I told medical personnel.) I struggled to help my son get ready for school after the holidays. As I was using the bathroom urgently, I fainted for the first time in my life. Paramedics were called. I was transported to the hospital where I spent five days on IV antibiotics for a sinus infection. Most of the first day was spent trying to get me to stay conscious. I kept fainting whenever they moved me upright at all. After being released from the hospital, I kept feeling strange "like I'm watching myself in a movie", "I just need to lie down. I can't function." My primary care doctor told me to talk to my new ENT doctor. The ENT doc kept telling me that was something to talk to the primary care doctor about. My sinuses looked clear and I did not have to have surgery like they suspected I would. This started me on a sixteen year journey of chronic "sinusitis" and terrible "sinus" headaches... Can you believe no one mentioned migraine?!? Axe in the face!?! Weird watching myself in a movie feeling!?! Can't function!?! It wasn't until I had an unrelenting headache, lasting ten weeks before a three day break then returning again, that I was diagnosed with migraine. Eventually, I was given a chronic migraine diagnosis. And the real fun began... That was nine years ago. I am now experiencing episodic migraine and Aimovig is helping since I had to stop taking Topamax because of side effects (tingling in hands, feet, face... also stupidity! I do not miss topamax ). Certainly a story of more than my first migraine. Sorry to go on and on, but now I suspect almost everyone who mentions sinusitis to me is probably a misdiagnosed migraineur (person with migraine).
1. Holly Harding Moderator & Contributor
 Thank you so much for sharing your migraine story with us. A fascinating journey of how your diagnosis evolved from cold, to sinus infection, to chronic migraine. One wonders if the sinus infection somehow triggered the migraine pattern? Was that the first migraine you ever experienced? So glad to hear the aimovig is working for you and that you were able to get off of a medication that was making you feel brain fog. Again, grateful you took the time. It's helpful to all of us to hear these stories so we can both learn from one another and feel less isolated as it helps to relate and connect. Please stay in touch!
2. sismo Member
 That was the first migraine, but looking back I remember having some issues in high school that were probably migraine related -more in line with abdominal migraine. I was very sensitive to not eating enough and then feeling so hungry my back hurt. If I didn't eat soon enough, then I was just sick. Also, I have always had horrible motion sickness, another frequent migraine signal. I do not have any ancestor relatives with migraine, that I know of. I do have children with infrequent migraine symptoms. Perhaps, if science knew where to look, they could see a gene mutation between myself and my parents.
glassmind Member
I will always remember my first attack. I was 38 yrs old. The pain came seemingly from no where and the gi and neirological symptoms had me questioning morbidity. I lived alone with pets. I though I was dying. I called friends to take me to the er. Only one could be reached. She said it sounded like a migraine, asked me what meds I had in the house, advised me, and stayed ready to take me to the er if needed though she lived quite far and refrains from driving in the dark. She checked on me by phone frequently listening to every gruesome detail of my symptoms and talking me down from panic. That first migraine ties for most excruciating migraine with perhaps only four others (three spent at hospital). I 'll save the reader the symptom details, but it was painful, gross, terrifying, soul crushing , and something I wish all people to avoid experiencing. Thankful for that friend. Thanks to her suggestion it may be migraine, I did a little investigation, consulted with my doctor and was diagnosed right away. Follow up treatment dragged, but Four years later I have some sometimes helpful meds and am scheduled finally to see a headache specailist in neurology hospital.
1. MelanieM Community Admin
 Thanks for sharing your First Migraine Story with us <inline-mention user-id="3906820" username="glassmind"/> . I am glad to hear you are scheduled to see a headache specialist- let us know how your appointment goes, I hope it ends up being helpful. ~Melanie (Migraine.com team member)
azreynolds Member
My first migraine happened when I was 10 after I fell off a 6 ft platform, landing on the back of my head. It knocked me out cold. We were at my cousin's farm in rural MN, so they called in the old country doctor. He told my mom to just let me sleep it off. He woke me using smelling salts and I remember trying to tell my mom that she was split in half with a black line cutting through the middle of my vision. She told me after I was grown up that I was just taking gibberish that day and nobody could understand me. So, I slept for almost a week. When I awoke, I had the worst headache of my life. I was nauseous and couldn't go in the sun without puking, and more exhausted than I can ever remember! The headache finally eased up enough for us to drive home again, but I kept throwing up going home. Why they didn't do more to help, I don't know. But I know that after I returned to school, I no longer could see the blackboard and had to get glasses. Migraines and headaches continued every few months, and slowly increased to daily chronic migraines by the time I was 55.
1. Holly Harding Moderator & Contributor
 My gracious, that's a dramatic story. Did you ever get a work up/ CT or other kind of scan to check for structural damage from the fall? I tell the story in this article of going to an inpatient headache clinic (three weeks in length) where we got every scan you can imagine to determine whether or not there was some underlying issue other than plain ole' migraine disease. Some patients uncovered structural anomalies that resulted in a change in their treatment approach. It was an interesting process, to be sure. <a href='https://migraine.com/living-migraine/not-a-nose-tumor' target='_blank'>https://migraine.com/living-migraine/not-a-nose-tumor/</a> Thanks so much for sharing your story with us, AZ. Always enjoy hearing from you.
beetlejuice Member
My first was at the age of 17.My Mother had died some 2 months previously at the age of 47 from breast cancer.It was a very difficult time for me as i was the youngest sibling and was very close to my Mom.I was with my Brother and his children and i can remember the enormity of the pain that knocked me off my feet, blinding pain with severe nausea.However, it responded well to paracetamol and i didnt really suffer anymore for about 3 years.They started as vertigo, severe disabling confining me to my home, unable to work.GP first diagnosed ear infection.After several visits to GP i was referred to an ear nose and throat specialist.After many uncomfortable tests and examinations and lengty discussions with specialists, it was agreed that i had a Neurological disorder.After 18 months, i was referred to a Neurologist, i was informed that i had Migraine.I remember becoming very frustrated as, like many people, i thought Migraine meant headache.The Neurologist explained that this wasnt always the case.He gave me a prescription for Pizotifen.After 2 days, the vertigo stopped.I was scared to move quickly, run, get up quickly from bed, incase i caused the vertigo to come on again.I was cured!! i had my life back for about 10 months.Each month i suffered approx 5 migraines,unbearable,blinding,severe migraine.Codeine and paracetamol helped a lot along with a higher dose of pizotifen.Throughout, college and university i struggled.My working life was interupted a lot and social life affected.By age of 30 i was having 8 each months.I had tried most anti migraine treatments and beta blockers and anti epliepsy drugs, to no avail.I ahve 2 children and i was migraine free when pregnant and whilst breastfeeding, only to come back like being hit with a sledgehammer immediately after ceasing breastfeeding.I am now 54 years old.Have had several mri scans seen several neurologists.Been seen at migraine clinics.Creied infront of Gp and pleaded for him to help me.I a have lost the ability to speak, understand, reason or care.I have 16 each month now and 3 weeks ago was administered Aimovig.There were a few side effects.There had been no reduction in frequency of migraines or severity of symptoms.
1. Holly Harding Moderator & Contributor
 What a journey, beetlejuice. Thank you so much for sharing it with us. I'm sorry to hear that Aimovig hasn't made a difference for you. It didn't help with me either, but one of the other CGRP's did help(Emgality). Perhaps it might be worth asking your GP if it's worth trying another type? Also you mentioned that you are working with a GP? If you can find one nearby, I encourage people living with migraine to be evaluated and followed by a Migraine Specialist (when possible) though it certainly sounds like you've been evaluated in every which way. If you're interested, here's an article with a link to migraine specialists in the US: <a href='https://migraine.com/blog/the-mrf-directory-of-headache-and-migraine-specialists' target='_blank'>https://migraine.com/blog/the-mrf-directory-of-headache-and-migraine-specialists/</a>. Finally, because you and I are similar ages, I will share with you a thought about migraine and hormones. You mentioned that your migraine attacks took a backseat when you were pregnant. For me, it was opposite, mine worsened and became constant when I was pregnant and breastfeeding. I consulted with an OBGYN about how hormones impact migraine and what I might expect upon menopause. It is her opinion that what we experience during pregnancy is a window into what we will likely experience during menopause. Most women have your experience (a break from migraine). Hopefully this means you might also experience a lift from the frequency and severity of your attacks at menopause. Of course there's no guarantee when it comes to migraine, but I will hope this is the case for you. Again, so grateful you shared. I hope you'll keep in touch. - Holly (migraine.com team).
2. ashleyheather Member
 Thanks you sometimes feel so alone. My pain specialist has been with me through a lot of years. I have had occipital lobe injections. I have wires in my head to block the nerves. I now have Botox every 12 weeks and Aimovig every 30 days. I try working with the doctors and tell them how my migraines feel and then they give up. I won't go to the ER because they always want to give me morphine.