What do you wish more people knew about migraine?

Community Thoughts: What You Wish More People Knew About Migraine

There are many myths and misconceptions about migraine. Many people don’t know that it’s a chronic condition, not to mention a neurological disorder.  So, we asked our Facebook community: what do you wish more people knew about migraine? Check out what our community had to say below!

I wish people knew more of the facts:

  • Just because I don’t look sick doesn’t mean I’m not dealing with the pain.
  • It’s NOT just a headache!
  • We’re not faking it.
  • They’re debilitating.
  • We also stress out about when the next one will come.
  • You may not see it but it’s there.
  • There is NO CURE!
  • It’s a chronic disease with too many “triggers” to list.
  • it exhausts you during and after the migraine.
  • Migraines are a neurological disorder.
  • It can last for days.
  • There is no “FACE” that says “migraine”.
  • NOBODY is TOO YOUNG TO HURT!
  • That it’s REAL.
  • It’s not a choice.

I wish they knew more about the symptoms:

  • Migraines affect your while body… not just your head!
  • How bad they actually affect your memory. It’s hard to get rid of the brain fog
  • I sometimes lose my balance.
  • I can’t think of the words I need to say, or I might try to say something but something else altogether different comes out.
  • It is exhausting.
  • The pain level is not anything like the 0 to 10 they always ask in the hospital
  • The brain fog, the nausea, the muscle twitches and numbness, the disorientation.
  • my forgetfulness is not my fault.
  • one minute you crave French fries and the next, that smell sends you over the edge.
  • That if I could actually drill a hole in my skull I would.
  • Hot, humid weather is difficult to tolerate
  • Sometimes I can function and not show any signs that I am sick…and sometimes I can’t even get up from bed
  • Noise sounds much louder.

I wish people knew more about relating to someone with migraine:

  • I did not solicit your advice and I do not want it!
  • Shaming a person with migraines won’t make them better
  • You can’t fix us, but please don’t forget about us either.
  • I’m not faking it to get out of spending time with you.
  • Workplaces should be more understanding of migraines.
  • People think when they have a bad headache, it’s a migraine. They have no idea what a true migraine really is.
  • Tired of hearing things like, “what did u eat that you shouldn’t have?” It’s not that simple!!!
  • It’s painful when people don’t believe you’re in pain.
  • Wish there was more awareness.
  • You can’t compare one person’s head to another’s.
  • I get tired of hearing, “She’s got a migraine AGAIN.”
  • I’m tired of being told I’m too reliant on pain killers and medication.
  • Sometimes all I want is you to sit with me. Not talk to me. Not touch me. Not judge me. Just be present and here for me to acknowledge my pain and need for compassion.
  • I can’t make it to a gathering doesn’t mean I don’t want to hang out with you.
  • I have chronic migraines but I feel like people are annoyed that I have them. Like I should be doing more to find a “cure”. I’m doing everything I can to be a functional person.
  • That we aren’t just “Drama Queens or Kings”. That we aren’t just crybabies. That we aren’t just looking for attention. That we can’t just “deal with it”.
  • Migraines create tremendous guilt and loneliness.
  • Mocking me by “being quiet” is not the same as considering my feelings and adjusting your actions accordingly.
  • Each person experiences migraine differently. Don’t assume you know what someone else is experiencing.
  • That when you go to bed with a migraine you are NOT going to feel like being “intimate” the following morning!
  • The whispering about us only adds to the pain.
  • You don’t get it and unless you’ve had one yourself , YOU NEVER WILL!!!
  • Get informed and involved in a migraine support group and/or migraine.com. You’ll find people who understand!

I wish they knew it affects your entire lifestyle!

  • This disorder affects my whole life.
  • They’re unpredictable.
  • How many plans, ideas, jobs and relationships it has thwarted.
  • How much of my life I have missed!
  • I try to go to work if at all possible, but I will fight nausea all day.
  • My whole life has changed, and I don’t like it at all.
  • The constant guilt of not being the spouse/parent/friend that I’d really like to be, or that migraines are hereditary and you’ve passed them on to your children.
  • How disabling it really is.
  • When you do feel like you have some energy, you try to do everything that was pushed aside, try to play catch up. It never ends.
  • You feel like you have no control over any part of it.
  • It effects everything and everybody in your life.
  • That it’s not a headache, it’s a lifestyle.
  • How difficult it is to drive, work, socialize, keep up on house work or even to talk.
  • My entire thought process is different. My eating and sleep pattern is different. Geesh, even my handwriting is different.
  • It’s a true disability.
  • I pay for it when I over exert myself.
  • I’m so sick and tired of wasting my life just laying here day after day. I have to miss work and am unable to provide for my family.
  • That whenever I say I’m fine, I’m really not.

I wish they knew more about phases, triggers, causes, and types:

  • Even when it ends I am in recovery state.
  • Migraines have multiple stages that can keep you feeling bad for more than just one day.
  • I wish people not only understood migraines but chronic migraines too.
  • The aura I get is really scary!
  • It’s not caused by “stress.”
  • That smells can be so strong and cause a migraine. Perfume in particular.
  • That you don’t always get aura before a migraine.
  • That migraines don’t always involve a headache.
  • That it can come on in the blink of an eye!
  • “Trigger” and “cause” are two different things.

I wish health care workers and researchers knew more:

  • I just wish doctors knew more about migraine. We have so far to go.
  • They need to stop calling us DRUG SEEKERS when we do have to go to the ER
  • What the cause of it is, and the solution.
  • When so many of us suffer with this chronic pain why isn’t more media and funding focused on it?
  • Be your own judge. Get a second opinion if you need it, even a third.

I wish they knew about comorbidities:

  • Migraineurs typically have other medical diseases/illnesses that seem to go hand in hand with migraines (vascular disease, fibromyalgia, depression, blood pressure problems, sinus problems, sleep issues are just a few).
  • They cause other physical & emotional problems.

I wish people knew more about treatment:

  • The plethora of medicines. The Botox injections. The nerve blocks. Massage. Physical therapy. Acupuncture. Acupressure. Ice. Heat.
  • It’s not as simple as just taking a pill and feeling better.
  • Treximet is the only med that I can a little relief with. And insurance will only cover 9 pills a month.
  • You may have to change up your treatment options to stay ahead of things.
  • That when I end up having to go to the doctor or the ER for treatment, it is because I have no more tricks left in my bag.
  • I need quiet, darkness and a cold room.
  • if I could cure myself, I would in an instant.
  • How long it takes to get rid of a migraine
  • That new daily persistent headache is different from chronic migraines and therefore needs to be treated differently.
  • When we have a migraine, we cannot always just “take something” and go on with your day!
  • How to stop them!
  • The difference between episodic and chronic migraines and how that affects treatment options and coping strategies.
  • That it can’t be gotten rid of by OTC meds.
  • Accupuncture can really help
  • If you need to take medicine more than twice a week for a “headache”/migraine, you need to be on a preventative! People don’t realize that!

What do you wish more people knew about migraine? Please share in the comments!

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