What do you wish others understood & knew more?

Migraine awareness month is here! It can be one of the most misunderstood diseases. What do you wish others knew more? Share with us.


Community Answers
  • danarae
    5 months ago

    Just because I have chosen or been forced to leave my house with a migraine doesn’t mean that I’m not in extreme agonizing pain, despite being strong enough somehow to try to act like I’m ok and can function. I may be there, but I’m suffering. It’s depressing when I can’t do all I would like to do with my daughter, family/friends, etc. It IS hard to make plans because while I force myself to work, sometimes I otherwise need to cancel plans or I cannot do what others can do (in the sun, physical activity, involving alcohol, etc.). I WANT to do everything, but must do what I can and compromise sometimes. Do a little bit or none depending. Or if I do it when I already have a little migraine, I will suffer greatly in no time, if I don’t make wise choices to avoid triggers. I wish I could be much more active!! My goal is to do better with PT and get out more with my family and friends.

  • danarae
    5 months ago

    All of the above that others are saying!! Just because I have chosen or been forced to leave my house with a migraine doesn’t mean that I’m not in extreme agonizing pain, despite being strong enough somehow to try to act like I’m ok and can function. I may be there, but I’m suffering and need understanding. It’s depressing when I can’t do all I would like to do with my daughter, family/friends, etc. It IS hard to make plans because while I force myself to work, sometimes I otherwise need to cancel plans or I cannot do what others can do (in the sun, physical activity, involving alcohol, etc.). I WANT to do everything, but must do what I can and compromise sometimes. Do a little bit or none depending. Or if I do it when I already have a little migraine, I will suffer greatly in no time, if I don’t make wise choices to avoid triggers. I wish I could be much more active!! My goal is to do better with PT and get out more with my family and friends.

  • lgreway
    5 months ago

    The one thing I wish others knew and understood better is the fact that just because I took my rescue/abortive medication, doesn’t mean I’ll be back to 100% when they kick in! IF they work, I usually am still pretty sick. I still have a headache, and am super tired and sore. The medication (when it works) stops it from progressing any further, and helps it go away faster, but is not an instant fix!

  • Kyky Knight moderator
    5 months ago

    Igreway,

    I know! Very well put—In my experience, dealing with migraine before, during, and after an attack requires so much energy that there isn’t room to do much else but tend to and recover from it. I wish more people understood, too, how much of an impact it has on our ability to function. Thank you for sharing!

  • theskyremains
    5 months ago

    How much I worry about what others think when I have to miss work or a social event or even family time due to a migraine, especially because I’m also an introvert.

  • Kyky Knight moderator
    5 months ago

    theshyremains,

    You certainly are not alone there! I feel the same way, it really can be so frustrating to have these moments taken from us by migraine. So sorry you have to experience the anxiety that migraine causes over missing important events and gatherings. Hope you have a wonderful week.

  • czwaschka
    5 months ago

    How much water I drink. How many different diets I have tried. The various forms of holistic or alternative treatments I have tried before seeking pharmaceuticals – acupuncture, chiropractic, physical therapy, sleep and allergy tests.

  • Kyky Knight moderator
    5 months ago

    czwaschka,

    I hear ya, especially about the water and diet. I started keeping a bottle of water at my bedside and drinking an entire bottle first thing when waking up, being dehydrated can certainly worsen the pain for many of us. Thank you for sharing, and take good care.

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