What’s Your Secret: Migraine Horror Story

By Holly Harding

1 min read

At its worst, migraine, a complex neurological condition, can escalate to a knee-buckling full-body experience that makes us wonder if we might break under its weight.

What have been my worst migraine experiences?

While migraine attacks hit us all differently, lots of us share the commonality of experiencing the off-the-charts pain that can come with this condition. Many have memories of migraine attacks that were so severe we wondered if we were dying.

In this What’s Your Secret Video, Holly shares a couple of her most terrifying migraine memories that shook her to her core.

What have your scariest experiences been?

It can help to air these memories out and hear the stories of others to remember we are not alone in navigating this challenging condition.

In the comment section below, we invite you to share some of your scariest migraine memories so we can connect, feel less alone, 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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Sunriser Member
Thank you for sharing your experiences and you have put into words what I could never mange to do, that feeling that you are turning into an animal, becoming sub human. It's horrendous and I have been calling it "the horrors" to try and explain to others what it is like to experience. I have spoken to my partner and he said how frightening it is to even witness me in my delirious state. We all know that it will pass, it's still a challenge to experience and exhausts me for days. 
1. Alene L. Brennan, RYT Moderator & Contributor
 <inline-mention username="Sunriser" user-id="6620443"/> thank you for joining the conversation. You make such a great point - it can feel so good when someone gives words to what otherwise feels like an indescribable feeling. I'm glad that you experienced that with this article because it certainly is challenging when you're living with things like the "horrors." Migraine life is not the easiest, it's why I'm so grateful that we have a community of people here to talk with that simply get it. Wishing you a good day today. Best Alene, team member
2. Holly Harding Moderator & Contributor
 <inline-mention username="Sunriser" user-id="6620443"/> It is so deeply exhausting, isn't it? I think part of my process, as I mentioned in the video, was coming to learn that it would pass. The terror that came with it in my earlier years had to do with fearing I would die from the pain- or be somehow swallowed up by it. And now, decades later- while I know I will emerge after the attack, I can still feel scared by the severity of the pain. It can get so high that it feels terrifying as I move through that subhuman experience. I imagine it would be scary to witness a loved one in that kind of pain, as well. Thank you for sharing your insights on that. I'm glad some of what I shared worked for you. It can be hard to put these intense experiences into words. Again, so glad you're with us. Warmly - Holly (team member)
djean Member
My worst horror story my parents traveled 1800 miles to visit on Thanksgiving and ended up in ER but worst part laying across chairs vomiting in cup for hours waiting to be seen.
1. Holly Harding Moderator & Contributor
 <inline-mention username="djean" user-id="3724348"/> Whoa. Okay. Yes- that does indeed qualify as quite the horror story. Truly, most migraine stories that include an ER visit are frequently horror shows because they are not set up to properly manage and treat migraine. The bright lights, loud noises, strong smells, and long waits are ingredients that combine to worsen a migraine attack. Add to that your parents visit. I'm not sure if you've ever heard of something called a "letdown" migraine attack: <a href='https://migraine.com/living-migraine/navigating-let-down-migraine' target='_blank'>https://migraine.com/living-migraine/navigating-let-down-migraine</a>. Basically it can happen when you have a stressful or event that occurs and then passes- after which a major attack occurs. Sometimes it can happen when we're looking forward to an event/visit of our friends and family- we do all the preparations - and when they finally come, part of us relaxes and is relieved they're there- and the migraine attack hits. Of course many triggers may have been at play for you- I just wondered with all that was going on for you on Thanksgiving, perhaps stress was at play. It was likely hard on you to feel responsible for them being in town while you were coming apart at the seams. I'm so sorry that happened to you. We're so glad you're with us and we appreciate you sharing your story with us. Please stay in touch. Warmly - Holly (team member)
azreynolds Member
 Terrifying experience with migraine? Hmmm, which to choose?? ER experiences rank very, very high, but one ER visit is tied directly with my other 2 horrible ones... being frozen, unable to move or speak due to such severe pain. Now I'm not talking about "not wanting to move" because of pain. I mean that I was frozen for 8 hours the first time and 9+ hours the 2nd time. It was like being in a coma, but I was totally aware of every agonizing moment. The first time was in 1978, before there were any migraine meds. I had been fighting a migraine for 3 days at that point, vomiting regularly, no sleep and percocet wasn't touching the pain. Hubby went off to work and I stayed in bed, waiting for meds to kick in...again. Then that was it. I was frozen. All I remember was swirling pain, nonstop... forever. Then hubby was home at 5:45 or 6pm. He couldn't get any response from me at first and was calling for an ambulance, when I whispered, "Pain." He scooped me up and carried me to the car. I couldn't stay on the seat. I had no ability to control any part of my body. At the ER, they ignored us. In Houston, only bleeding, dying, or pregnant people get treated. Seriously! At Ben Taub Hospital, a friend who was shot in the head during a robbery, was put on a gurney in the hallway for hours!! He wasn't considered an emergency. So migraines, looooooowwwww priority. Well, I kept sliding out of the chair so much that hubby just left me in the floor, placing my head under the chairs to block light further. Finally a nurse got so mad aboutleavingme on the floor that she put us in a room to hide me. Four hours later, a doctor came in, hook me up to glucose for dehydration, and gave me a shot of something that knocked me out. We got home the next day at about 6 am. The migraine continued for 2 more days, but not as bad. I never dreamed I would experience that again, but I had a repeat in 2015. By that time, I knew ER was useless. After hubby shook me conscious, I managed to refuse his suggestion of the ER. I thought the Sumatriptan might have been responsible for freezing me, totally forgetting about what had happened in 1978. So instead of taking another Sumatriptan, I took an oxycodone. I remember getting hysterical later that night because the pain wouldn't stop. Crying uncontrollably. Thankfully I've learned, through meditation, to not get upset like that anymore, but to remain calm and DON'T CRY! It only makes you hurt worse.👍 
1. Holly Harding Moderator & Contributor
 <inline-mention username="azreynolds" user-id="3677307"/> WOW. That is quite a stirring description. A bit traumatizing even to read about! I'm so sorry to hear you went through such a thing. But I'm glad you shared it. I think you got to something that hasn't been shared- the way migraine meds have been developed in the very recent past. For those of us who were born in the 1900's, we likely experienced a different reality than those who are going to the ER now. I even remember a difference between my teenage ER trip and the trip to the college hospital - as in that 6 year period they had began using Toradol injections for migraine. It was such a bizarre experience (and the first I'd ever had) in which I was given a treatment that allowed me to walk out in fairly fine shape after going in two hours early on the verge of passing out from the pain. And yes- pro tip re: resisting the urge to cry. Love you, Annzie. Hope you've not had another ER trip since 2015 (?). Warmly - Holly (team member)
azreynolds Member
Sorry, I wasn't clear. I haven't returned to the ER since 1994. I did not go to the ER in 2015. My experience with ERs and migraines have been so awful, I vowed to never return with a migraine ever again. They ignore you forever and the lights, noise and scents hurt me too much. I just chill out at home with ice packs/heat, a combination of medications and meditation. I haven't had a 9 in a long time (9s being inability to speak, 10s being unconscious). During the last level 10, when I fainted I hit my head on a marble dresser. I haven't fainted from a migraine since then. I go through level 8s, maybe even 8.5, but so far no matter how bad they are, I maintain the ability to speak and move. Perhaps it's the Aimovig or Botox? They seem to definitely lessen the severity of my migraines. Unfortunately, Amgen Safety Net Foundation has lowered their financial qualifications by $16,000 for 2025 and I will no longer qualify. 
1. Tracy Hannigan, MOstMed, ACE-HC Moderator
 <inline-mention username="azreynolds" user-id="3677307"/> it sounds like you're in good company wanting to avoid the ER! Fainting is pretty scary though - did you get seriously hurt fainting and hitting your head? That may end up giving you a different reason to go to the ER! Does your neurologist have a plan to help if the Safety Net Foundation disqualification means you can't get treatment that works for you? Warmly, Tracy (Team Member)
azreynolds Member
<inline-mention username="Tracy Hannigan, MOstMed, ACE-HC" user-id="3908580"/> I will discuss the Amgen Safety Net Foundation's change at my next follow-up visit for my botox injections later this month. I am torn between fighting it, or just "giving in" to see how often my migraines will occur being off Aimovig. Nurtec seems to be working better as my rescue med so it might suffice. But I'm still relying on Nutec samples from my neurologist because I don't financially qualify for any support from Nurtec either, and it's cost to me after insurance is $900+ per month. The sad part is with hubby finally retiring completely in December, our combined Social Security income is below what they require for Aimovig. But since SS income is not enough to live on and pay all our bills (and we live very frugally), we will have to pull money from savings every month. We have saved our entire marriage for this situation and can support our SS income, but using our savings to meet the monthly bills will throw us out of the new lowered requirement level. It's a catch 22. I don't know if the 2018 fall hit on the marble caused additional damage to my TBI or not. Hubby said a big knot on the outside was good because "out" means "not in" which could cause real damage. All I can remember about that fall was a truly horrible headache for about 10 days, but not my worse one so I didn't worry too much. However, when I did my faceplant in 2023, I noticed several problems afterwards with memory, with finding words, and using my left arm. Getting my brain to connect to my left arm, was a real problem. That fall shifted my neck vertebrae C4 out beyond C5, pinching a nerve rendering the left arm useless for 3 weeks. But even months after the arm healed, I couldn't play my mandolin because my brain would shut off. Also, I realized I had lost parts of my muscle memory (which musicians rely on). Plus, my migraines increased back up to 20 per month, and my vision was affected again. My Neurological Optometrist, who helps me fight my problems with the binasal occlusion glasses, told me that he thought the faceplant hadn't helped my poor old brain. Once you've had a TBI, every severe hit afterwards can possibly contribute. Since there was a disconnect, we're pretty sure something happened this last time. But like all migraineurs, I just plow on along. I'm still retraining my brain connection to my left arm with PT exercises and practicing my mandolin. 
1. Cody Leach Community Admin
 Hey <inline-mention username="azreynolds" user-id="3677307"/> - Thanks so much for sharing what's been going on for you. It's always wonderful to hear an update! Also, kudos to you for taking the time and effort to navigate these often confusing avenues of treatment. It seems like you have a good grasp for what you do and don't qualify for, which will hopefully help you make more sound decisions as you continue to weigh the pros and cons of each treatment. None of these decisions are easy, but I can tell from your post that you've got a good head on your shoulders. [minus maybe the migraines of course. which I can totally relate to 😉] Warmly, - Cody (Team Member)
azreynolds Member
<inline-mention username="Cody Leach" user-id="4536970"/> Hey Cody! Good to hear from you too! Your comment about navigating the avenues of treatment made me think about sharing the details of Amgen Safetynet Foundation in case others need help to access free Aimovig. It wasn't hard for me to get approved. It requires your doctor's assistance though. You download the forms off the Amgen website, complete them, and have your doctor completed his, then he sends everything to Amgen Safety Net Foundation. Then about 6 weeks later, they called to speak to me about my migraine experiences. That was it. However, as I mentioned above, you have to be under a certain income. They request your tax form from the previous year. Attached are the new financial requirements. One important note. My neurologist made me promise to give the medication my commitment for a full year. He said nobody knows how medications will work on patients who have had migraines for over 50 years because they don't do research on us. As a matter of fact, I've only been included in one survey because of my lengthy history. For me, Aimovig started working good after 2 full years. Less frequent migraines now, and lower intensity over all.<img src="/content/images/2024/11/04/01540259b314826ab47dd0d24044efd6_medium.jpg" alt="Financial requirements " class="uploaded-image"/>
1. Holly Harding Moderator & Contributor
 <inline-mention username="azreynolds" user-id="3677307"/> That is fascinating re: how those of us with lengthy migraine histories are left out of research. Thank you for sharing that information. I'm at 47 years and counting with migraine. Also thank you for the information re: the savings program with Amgen. I'm deeply perplexed by these types of savings programs. I remember how I qualified for substantial savings through botox until I went on Medicare and then those savings disappeared. How can it be that those of us who have the least income and frequently no private health care to supplement our health care are those who cannot access these savings programs? Seems backward to me. The wealth and depth of your knowledge (and your willingness to share it) is so beneficial and appreciated, Annzie. Thank you. Love to you today and all days. Warmly - Holly (team member)
lisawisconsin Member
Before really knowing much that I was a migrainuer, being on vacation in Canada, and driving to a town for groceries with the family, half way between two town 100 miles apart...and the I can't move migraine comes on. Can't move or I will die. I'm going to die. I know I'm not, but I'm going to. By the time we got to Red Lake, the family went into the store, I stayed in car lying flat, wondering if this was my time. It's almost comical now, they bought so many crackers, ginger tea, etc. I knew going to an urgent care or ER was pointless, let's just get back to the cabin, my head was on fire, so dizzy I couldn't walk straight. Get back to the cabin, and learned my lesson when traveling to bring your own pillow. Great cabin for fishing, but the linen (and I had washed it at their laundry facilities!), still had old man smell to it, and pillows flat as pancakes. I literally took everyone's pillows to make one pillow. I slamed down probably too many Tylenol PMs, but just knocked myself out. Lesson learned for traveling. It reminds me of having to pack a diaper back when you travel with me. Need my pillow, anti-nausea meds, head pack, etc. I think it made me scared to travel for a long time. Pre-migraine confirmation, another incident, sitting in the back seat while my father-in-law drove around the countryside with family...omg...I'm like I'm going to puke. By the time we got back to the farm...my MIL, who is stone cold, for the first and only time, held my hand so I could walk to the house I had such bad vertigo. I'm wondering if anyone else finds that yes, now I manage symptoms and lead a fairly boring life, but that is the filp side, our lives are a bit boring. Trips, travel, etc. aren't fun like they used to be...I put on a happy face but I'm terrified I'll get a killer migraine or vertigo.
1. Holly Harding Moderator & Contributor
 <inline-mention username="lisawisconsin" user-id="9770432"/> oh, yes, Lisa. I can totally relate. Isn't it wild how much we learn? Looking back when we think of how much we now plan our lives around migraine compared to when we were previously fairly ill-prepared. It doesn't take many painful and attention-grabbing experiences like the ones you outlined to change our ways. And yes, the downside of this is that we then begin to live in an uber-prepared fashion. So carefully- living in fear of setting off a horrific attack - never again wanting to be caught with our proverbial pants down/unprepared. I thought these two resources may resonate with you: <a href='https://migraine.com/video/limited-life' target='_blank'>https://migraine.com/video/limited-life</a>. And: <a href='https://migraine.com/living-migraine/pushing-through-limitations' target='_blank'>https://migraine.com/living-migraine/pushing-through-limitations</a>. It sounds, despite it all, like you still venture out for trips and travel- but just do so very carefully. That is to be applauded. Many of us life within such limitations that we no longer travel out of fear of setting ourselves up for major attacks and situations that are hard to handle. We each have to find our own balance when it comes to respecting the limitations of migraine and still maintaining our freedoms and joy in life despite the condition. We may not always get it right - and sometimes we may even choose to risk an attack so we can live a little. With you! Warmly - Holly (team member)