25 and counting…

I have been suffering for migraines for as long as I can remember. I am unsure of the exact beginning date, but I know I’ve been getting them since I was as young as second grade. I suffered for years, through grammar, middle, high school. I was finally allowed to be prescribed an abortive medication when I turned 18 because they were no longer narcotic based, and I switched to a primary care physician that also suffered from migraines, so she understood what I was going through. Eventually, each of the abortives I tried stopped working. That, and I couldn’t handle some of the side effects.

The most frustrating part about this disorder is not knowing when it’s going to happen. I am afraid to make big plans because I’ll have to cancel if I get a migraine attack. Then I’ll have to try and explain it’s because I have a migraine. And hope that whoever is involved will understand. But then it may keep happening, and I’ve already had damage to my friendships because of people that just don’t understand I’m not making this up. I can’t just take an OTC and be done with it. That’s not how this works. I know it’s not my fault, but I can’t help but think it’s my fault when my friends don’t understand that I can’t control this, even though I am trying.

“Why don’t you just take an OTC?” OTCs have never worked for me. I’m not exaggerating. I literally have never found an OTC that has taken away any of my migraine pain. “It can’t be that bad.” Really? Would you like to feel like a hot iron was poking your eye every second? Or like an icepick was just chiseling away at your temple or left side of your forehead? Maybe you would like to start feeling a slight pain in your head one day, and then feel like you were going to pass out, throw up, and die of thirst, no matter how much water you drink, all at the same time. “You’ll grow out of it as you get older.” I’m in my mid-20s. I think I’m growing into it more than I’m growing out of it. And that isn’t really comforting when I’m losing days out of every month when I’m only in my mid-20s.

I’m now in graduate school, and I get nervous everytime I have to take a final because if I get a migraine attack, I know my grade is going to suffer. I have to miss class because of migraines. I’m afraid to work at internships because I don’t want to have to call out because of a migraine. Not many people understand that this isn’t a simple fix, and I don’t want to be seen as unreliable. It doesn’t help that I’m a perfectionist and sometimes I know I could do better – if I didn’t have this problem.

I am not trying to throw a pity party. I have days where I can function. I am intelligent; I have done well for myself so far; I know there are people worse off than I am. But it’s hard to remember that when I am stuck in bed all day popping pain medication that I don’t even want to be taking because I’m afraid of the future consequences.

I’ve tried two preventatives. One made my migraines worse. The other I had to be convinced to try because it was an anti-depressant, and due to my history of depression, I was afraid it would screw with my brain chemistry and cause me to develop depression again. It worked for 6 months, and now I feel like I’m starting to go backwards. I’ve been placed on a opioid pain medication because that is truly the only abortive that works for me. I’m forced to pick and choose when to take it because I’m aware of the risks of taking it too often. I track my migraines so I can figure out triggers, but I’m afraid two of my biggest triggers are ones I will never be able to control (barometric pressure changes and hot weather). I just want to be “normal” – whatever that means, and these thoughts of self-loathing due to my migraines only come when I am suffering from a migraine. When they’re not there, it’s like they don’t exist, but when they come, I feel like I’m in hell.

I wish there was more research and emphasis out there for this disorder. While there are ideas, they aren’t concrete – and they are so different and varied that nothing is for certain when it comes to anyone. It’s a guessing game, and I hate wondering if I, or my doctors, will ever find the right answer.

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

View Comments (12)
  • whtesatin
    5 years ago

    I can SO relate to what you are saying! I hate to make plans because it seems like every time I do, God laughs and I’m down with a migraine. Most of my family understands, but I can still see it in their eyes that “Oh it was just a headache, when I get one I just pop a Tylenol and I’m good to go”
    Fortunately, I have a couple of very close friends who go through the same thing, so when we make plans, on of us has to cancel at the last minute (second), they completely get it and are possibly in the same position,

  • kyange
    5 years ago

    Thank you so much for sharing your story. I can relate to this on so many levels. It is so wonderful to hear these stories and know I am not alone.

  • Tapati
    6 years ago

    With regard to migraines on test day, if you can bring in documentation of your migraines from doctor to disabled student services, you may be able to arrange through them for a make up test if you have a migraine on test day. It can’t hurt to talk to them and see what they can do for you. Students with other issues that fall into the large umbrella of disability (and chronic illness does) often take tests separately, for instance with no time limit in a quiet environment. I don’t see why you can’t get make up tests.

    I’ve found for my hormonal triggered migraines that the Migrelief formula with magnesium and feverfew helped as a daily med.

    I have known people whose migraines abruptly stopped. For myself, am hoping for menopause.

    I have friends who, when we make plans, understand them as tentative and we check in on the day of to see how I’m feeling. True friends will do that.

  • Nancy Harris Bonk moderator
    6 years ago

    Hi Tapati,

    Thanks for sharing that information with us. As you said it’s always a good idea to talk to teachers and/or professors for accommodations if needed. If the teacher doesn’t respond, the next step may be to take it to their boss whether that is a principal or dean or what have you.

    Many women with migraine hope they are better after menopause. I do have some numbers I can share with you on this topic. After natural menopause (nonsurgical) 67% of women find that their Migraines improve; 9% of women find their Migraines become worse; and
    24% of women find their Migraines patterns do not have any change whatsoever.
    When a women enters menopause with surgery, after a hysterectomy, the numbers a quite a bit different. After menopause with surgery, 33% of women report their Migraines are better; 67% of women find their Migraines become worse;
    and the number of women who don’t see any change in their migraine pattern is inconsequential.

    I’m keeping my fingers crossed so I can be part of the 67% who get better going through natural menopause!!

    Nancy

  • dawnraymond
    6 years ago

    I started suffering chronic migraines at age 24, although I’d have started getting migraines at age 8. I had just had my twin daughters that came 2 months premature, stayed with them 4 hours away, for a month in the NICU. When they were 8 weeks old, I suffered a migraine attack so severe, It blinded my central vision, ringing in my ears, nausea, so dizzy I had to crawl to the bathroom, tingle/numb feelings in my limbs, I was in severe pain unlike any headache I’ve ever had, and threw up in such a violent way my stomach area was sore to the touch. For an hour I laid on the cool tile floor, unable to leave the bathroom. My babies were sleeping after being changed and nursed. I didn’t know migraines could be that severe. I suffered from them since I was 8, with the headache migraines and the abdominal migraines. This was so severe, I thought I was having a stroke/blood clot from the c-sec, couldn’t call for help, would the babies be okay until someone found me dead? My husband wasn’t due home til early eve, it was only 8am. Managed to crawl to the phone, and my husbands Nana (twins great-grandma age 78) got a ride over and took care of the babies, sent me to bed with motrin. From then on out, I had chronic migraines with a hormonal trigger. As my 20s continued the migraines got worse from one week a month, early 30s 2 weeks a month, late 30s 3 weeks a month (week before period-during-week of ovulation) Now early 40s I spend 2 weeks with chronic migraines. Disabled at 38, got disability without a lawyer. Before, I worked as a banker and was on FMLA for years to keep my job. I totally identify with the worsening of migraines in your 20s. Mine continued to escalate in my 30s, now starting to wane a bit in my 40s. All doctors believe after menopause (my mom and her sister were 55 when they went through it)the migraines should decrease. Tried 50-60 different medications/therapies. Some worked for a time, stopped. Most never worked. I have only 5 meds, and pain management is part of the protocol. This even fails at times, I go to ER for IV meds or hospital stays. I’ve lost friends and family due to this neurologic painful genetic disease. Lost touch, couldn’t keep up, cancelled many plans & appointments, no shows, missed important deadlines/due dates, tardy/late, hurt feelings. Mistaken for lack of respect, lazy, not motivated, not caring for my health properly, accused of having a chip on my shoulder, not being co-operative or obedient, moody, not trying or putting forth effort… Being a bit “type A” trying to do everything perfect, wanting to please, to be liked, belief to be kind, patient, good, happy, and helpful. Above all truthful, not a person known to lie or exaggerate. Especially when it comes to my health. I want relief, to function. I have a smaller but close circle of friends/family now. I don’t get to go a lot of places, but we sure enjoy it more when we do go. Your life experience is quite “normal” for suffering migraine disease, I hope you can see that compared to my experience, and the others who commented about theirs. One of my twin daughters also has suffered migraines since age 8, at 20 yrs old she’s been a full time student, held a job, interns & community volunteers, she suffers 7-10 days a month. My brother suffers, cousins, my mom still gets 1 or 2 monthly. Migraine gets personal, and that’s really hurtful to deal with. It steals time from us, and demands it be dealt with above all else. It leaves you exhausted, depressed, anxious, isolated, with no control. Any chronic, painful, disabling condition/disease will! I hope something works for you, or combination of therapies/protocol. Never give up hope, keep trying, and talk to others who live just like you do w/ migraines. There is a normal, for migraine sufferers even though we experience individually. Emotion, mental, physical and spiritually we can support and encourage. It costs nothing to show kindness and love. The family & friends that stick close now are keepers. Unlike the family & friends that are now considered “fair weather friends” The truest ones are there through monsoons, tornados, triple digit heat, below zero cold, and a tsunami!

  • pooh2you
    6 years ago

    Thank for sharing. One of the best things about this site is the feeling of “I’m not the only one” that I get when reading other’s stories. I can’t tell you the number of times I have had to cancel plans due to migraines. It makes me feel like a social outcast. My joke now is that I don’t RSVP to invites because then I won’t have a migraine and will be able to attend – if I respond “yes” it will doom me to a migraine that day. I think my friends have gotten used to this – “we hope to see you” (but know we won’t). So frustrating.

  • not so joy
    6 years ago

    Since you are in college use your migraines. Need to write a research paper on a medical topic – migraines, argumentative – migraines as an ignored/disbelieved syndrome, creative – how your migraines feel and how you function or think the world would function if everyone had them, etc.
    Maybe in your research or writing you will put together the right info & help unlock this curse for us. Or maybe it could just be cathartic to let off steam to the professors. I use to write about migraines as or in my first paper for each class & professors were a little more tolerant of most time deadlines.
    Good luck.

  • Ellen Schnakenberg
    6 years ago

    joyejensen – That is an amazing idea!

  • Nancy Harris Bonk moderator
    6 years ago

    Thanks for sharing a difficult topic with us. It seems to me people have less compassion, patience and empathy for one another today. Whatever happened to just being nice to one another? When did we lose our ability to be kind to one another under any circumstances…

  • CampbellScot
    6 years ago

    the lack of compassion is infuriating. Praying that you will find a treatment that works well for you. Migraines are so varied and so different from person to person. I wish people could understand that we don’t WANT to miss out on things or cancel at the last minute. I was able to manage my migraines in college pretty well, but when they were bad there was no way I could be in class and some of my professors were not interested in the reason. “A headache is not a reason to miss class”. So frustrating. Best of luck to you.

  • Caletta Carroll
    6 years ago

    I know exactly how you are feeling. I have had chronic migrains for over 20 yars. I feel like I am missing out on so much with my family. I have been told that its all in my head and I just want attention! I wish that were the case!
    I have 5 grown kids and 7 grand-babies that I am missing out on them growing up. I really feel as if my current headache doctor is just one of those that says , yes u have migraines so take this and see how it works! I feel like he is tire of hearing about it just as much as I am tired of having them. I do not understand the lack of compassion from people anymore. Alot of them being my own family!

  • CampbellScot
    6 years ago

    I sure do hear you on that! It is shocking to me how little people seem to care. I would not wish migraines on anyone but sometimes I wish I could give them just a flash of the pain so they could understand that I am not not complaining of an every day headache. Hoping your family will come around. All my best to you!!

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