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Some Migraine Questions May Not Have Easy Answers

Some questions are simply not easy to answer, and it’s strange to me that for some reason this is a cause of stress. I want to have answers – for myself and for others. It’s important for me to be able to explain what is going on, when the migraine attacks started, and why they are not getting better. There is a driving desire to know what is currently unknowable. Maybe because somehow, in some way, this would give back some sense of control. Or maybe it’s my innate need to understand, be understood, and to have migraine acknowledged for the disabling disease that it is.

The endless search for migraine answers

As a life-long migraine warrior, when people ask how long I’ve had migraine I really don’t know what to say. My default is usually “over 45 years” or “as long as I can remember.” It’s even harder to answer when I was diagnosed! And then there are the endless questions such as why I’m “still sick,” or what causes migraine. Not to mention asking why doctors aren’t able to help. As much as there seem to be endless unanswerable questions now, I grew up at a time when migraine was even less recognized than it is now. The only thing I’m really sure of from childhood are the memories of darkened rooms and explosive pain. Taking pain medications that no child should be on. Plus a long trail of old wives’ tales remedies which, at best, did nothing and, at worst, made me more sick.

A childhood lived with migraine

Growing up as a child with migraine is certainly no cake walk. It wasn’t 40-50 years ago, and it still is not. I have vivid memories of trying to make it through a school day. Flashbacks to school nurses who insisted on telling me that “fresh air and exercise” would make me “feel better” as they shoved me out into the bone-chilling English weather. Phys Ed instructors who didn’t get that exercise made things worse. Endless studying through blurry eyesight, nausea and a pounding head. The list goes on and on for high school, and once I went to university that was only survivable because I simply didn’t have to show up to classes when sick. Thank goodness for a kind-hearted and much-valued friend who shared her notes with me on countless occasions!

Unsurprisingly, many of my memories are simply one big blur, thanks to my brain feeling like it was reduced to a spongy swamp most of the time. It’s still a mystery to me how I graduated both high school and university, and managed to move into the working world of the “normal person” in a quasi-functional way. Or how I raised three boys through multiple ER trips, medication side effects, canceled plans, and countless days spent curled up in bed. It’s a mystery to me how any of us do it, but especially our children – children who are often too young to understand what is going on or how migraine could potentially impact the rest of their lives.

Looking back helps me look forward

Thinking back, I find it nothing short of miraculous that those of us born at a time completely lacking in migraine medications were able to survive. Every time I get frustrated at the lack of answers, and how poorly controlled migraine is for so many, I pause to remember how far we’ve come, and the incredible advances recently. I look at the clinical pipeline which to me represents hope. HOPE in the midst of a devastating disease which takes so much from so many. HOPE that maybe, just maybe, there will be real answers. It’s a dream of a world with medications that actually help without intolerable side effects. A world of doctors who are educated and scientists who are passionate about getting answers. HOPE for a society that understands migraine is not just a headache, but an incredibly complex and incapacitating neurological disease. HOPE for the future.

That hope somehow gives me permission to have unanswered questions. One thing I am learning is to accept not having all the answers. To kind of “breathe into” the disease and realize that there are still many more unknowns than knowns. To realize that I don’t need to have all the answers. I’m learning to shrug my shoulders and say, “I’m not really sure,” or “I wish we had the answer to that.” I’m learning to accept the really bad days without letting them stop the occasional good ones. To actually rest when needed. Really rest! And… to let go of guilt for the things I can’t do, pick myself up time and time again, and keep on going!

Do you struggle with unanswered questions? Are you able to live with the unknown while holding onto hope?

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

  • pigen51
    2 months ago

    The difficult thing is when the smart people come out with new treatment ideas, that hold promise for perhaps millions of migraine patients, such as the new CGRP medications, and I give them a try, and they never seem to work for me. And so, once again, I get discouraged, and just want to tell the neurologists to leave me alone, and stop giving me false hope.
    I know it is not like that, and that most of the doctors I have seen have had my best interests at heart, but after over 40 years, and probably 40 doctors of many different disciplines, I feel as if I have more of a handle on migraines than some of them. In fact, I know that I am more aware of the migraine protocols than some of the doctors I have seen.
    It is not their fault, but my 40 years are hard to compete with a doctor who might have just touched on it in class and in their internships and resident time.
    So when a new doctor suggests depakote or topamax, I almost want to shake my head at them, and laugh. I have tried both of them several times each, in fact I am on 50 mg of topamax right now, but it really is not doing anything.
    Doctors that will listen to me about what my experiences with migraines have been are worth their weight in gold.
    The problem with me and my migraines is that I have never found a treatment that will prevent them, or even lower the number of bad days per month. So that always meant that I had to rely upon an abortive, for the really bad ones. Now for me, the only thing that worked was a narcotic medication, and something like zofran or vistaril to keep me from being so nauseous. Of course, now with the government crack down on narcotics, I am not able to go to a medicenter or an ER to get a shot of what ever they might use. It was always a challenge anyway, because many doctors would not use narcotic medications for migraine headache control, just as a rule, because number one, it is not something that they can see and touch and feel, and number two, they often say that using narcotics is just too likely to cause rebound headaches.
    I am sure that many of you have found the same issues, and know what I am talking about. So now, since the triptans do not work for me, no matter which one I have tried, I basically have no abortive that I can use. As a chronic, near daily migraine patient, life can be hard at times.
    So for those of you who struggle with finding answers to your questions, about how to prevent or abort your migraines, I understand, and I sympathize with you completely. And I wish you the best of luck. Never stop seeking answers and help, even if it is just an online support group like this. It can at times be more help than even your closest friends and companions.

  • Shoshana Lipson author
    1 month ago

    Thank you for saying all this – the discouragement faced when medications don’t work or when doctors don’t seem to listen can be huge and the impact on us cannot be under-emphasized. Not having abortives that work or that are safe to take is a very big problem – one that I totally relate to – and I’m so sorry you are dealing with that. Please don’t stop seeking answers either and don’t give up. Most of all, stay connected with others who absolutely “get it”… they can be an invaluable lifeline! Hugs1

  • deedeevee1
    2 months ago

    I despise the unknown. I hate the lack of control of my own life. And I truly hate people’s not understanding because if you don’t get it you just don’t get it!! I’m grateful that I didn’t have them as a child or young adult. And I’m in total awe of those that are raising children with this terrible disease. I can barely take care of myself and sometimes I cannot. I couldn’t even imagine being responsible for another human being. You are the true heroes of this disease.

  • Shoshana Lipson author
    1 month ago

    It’s really challenging dealing with the unknown! The challenges just of managing a disease are big enough, but the anxiety, worry or frustration that comes with the unknown can definitely add to the burden:( – Hugs!

  • glassmind
    2 months ago

    Thank you for sharing you experience. What an amazing journey.

    I also like the sense of control that being able to articulate about migraine gives me. So it is frustration to lack solutions.

    But I’ve learned to use and be comfortable with “open-ended” answers to my own and others’ questions.

    Such as “The causes of Migraine are varied and sometimes ellusive”.

    “I am doing all I can to avoid and treat my migraines.”

    “Doctors and scientists are continually working to understand Migraine and provide effective therapies. Though individual doctors can be as ignorant or lacking in compassion as anyone else, there are good ones out there.”

    These answers all lack conclusions, but for me, provide more hope, determination, and comfort than saying “I don’t know.”

  • Shoshana Lipson author
    1 month ago

    I love those answers you suggest – they are awesome ways to respond to people without offering definitive answers but helping give us a voice:)

  • glassmind
    4 weeks ago

    Thanks. Sometimes I just say those things to myself for comfort. Lol

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