What's the most frustrating thing about migraine?

Community Thoughts: What's the Most Frustrating Thing About Migraine?

Migraine can affect every aspect of our lives. Sharing about it with others can be helpful in knowing we're not alone with our frustrations. So, we asked our Facebook community, "What's the most frustrating thing about migraine?" Over 200 people responded! Check out their answers, and know you are not alone in yours!

The most frustrating thing for me is the condition itself, including symptoms:

  • The symptoms are unpredictable! I just don't know what to expect!
  • When you actually cannot move to get your medication.
  • Vomiting up medication because the pain is so intense.
  • I must sit straight up and very still, in complete silence and blackness.
  • The migraine itself. Then the hangover effect.
  • Sounding like a broken record when people ask how I'm feeling.
  • It all hurts but the worst part is the vomiting followed by hours of dry heaves and wishing my head would explode.
  • The sheer torture of symptoms.
  • Everything.
  • Keeps me from sleeping.
  • The cluster headaches that wake me out of a dead sleep in the middle of the night.
  • Getting an aura when doing something important like driving, working, anywhere in public.
  • Blurred vision and severe pain.
  • Sensitivity to light and sound.
  • Migrainous Vertigo.
  • Knowing that you'll have to bear it for a couple of days at least.
  • The pain that finally goes away... only to return the next morning
  • Frequency
  • Timing
  • Not being able to move without vomiting from the pain.
  • When I lose movement in extremities.
  • Scalp, face and arm feel strange, I get in a stupor. People think you did drugs.
  • It can be depressing.
  • Not being able to express a thought.
  • The emotions coupled with hormonal changes and frequent migraine pain are causing me to neglect my home.
  • I'm always tired.
  • The dropping twitching eye & even paralysis of the affected eye.
  • Not being able to see.
  • Other people's treatment success stories -- why them, and why not me?!
  • Being a male. When having a migraine I've often been treated as if I should toughen up.
  • Knowing that I need to force myself to vomit because I am so nauseous.
  • To know that I'll have it the rest of my life.
  • Isolation
  • Feeling like my migraines control me.

My biggest frustrations involve other people:

  • When people don't understand how debilitating a migraine can be.
  • When people say "it's just a headache"
  • The reputation of not being dependable.
  • People not being able to see your pain level.
  • People's comments when you have to cancel appointments.
  • Family telling me to slow down or stop doing something I'm truly enjoying because it might trigger one and inconvenience them. REALLY ???? I only have a few "good" days.
  • The people who make assumptions about my condition when they are truly ignorant. If I could change something, take something, eat something TRY something that would make them stop, wouldn't I?
  • The most frustrating thing about migraines is that now my child suffers from them too. I hate the thought that I passed down such a thing.
  • The most annoying, although the well intended, is people sending me links of things to try.
  • My spouse telling me he believes I have them but "fake it" a lot.
  • When people think you're just lazy.
  • When people think you're exaggerating.
  • People who have never had one but think they have.
  • Migraines are bad enough but not having support and understanding is worse.
  • Being called a party pooper because you're exhausted and your bones and muscles hurt from the meds.
  • People telling you to rest, like you can sleep with the base of your skull feeling like someone's sticking a knife in it.
  • The misunderstandings and stigma.
  • When people say "you always have a headache".
  • Having to hear "Why can't they find a cure for those?"
  • People who don't believe a migraine is real or think it "should be" just one a decade occurrence
  • Family and friends constantly asking how is my head, knowing what the answer will be. Just stop asking if you're just going to roll your eyes and say AGAIN?
  • When you hear "So & so is REALLY sick," as if being a migraineur is not a true illness.
  • Nobody believes me.
  • People who think you shouldn't use narcotic pain relievers.
  • Trying to explain your pain.
  • People who tell you oh this condition is worse so my pain is worse.
  • Saying "I have a migraine," to anyone near me. They are so disappointed that I just ruined THEIR day.
  • Everyone thinking that some drug or junk they saw on Facebook or going to the doctor is going to completely cure you from having attacks.
  • When I have difficulty with speech, family and friends think I'm over medicating. They assume the worst.
  • It's hard enough just to get migraines let alone be judged.
  • To say I'm fine when on the inside my head feels like its going to explode.
  • I hate the assumptions from people that I must have done something to trigger it.

It frustrates me most that my loved ones and plans are affected:

  • Letting people down.
  • Making my family 'victims' of my migraines.
  • Feel like my migraines control my husband's and my lives - we can't make any definite plans because we're just not sure how I'm going to feel.
  • I have missed out on so much of my daughter growing up, and countless things with family and friends.
  • It takes my life away!
  • I once missed a trip to NYC with my siblings, which I will always regret.
  • The beautiful days when everyone is enjoying each other and the weather, you are in your cave suffering.
  • Knowing I'll likely cancel about 50% of the plans I make.
  • Having to tell my eight year old daughter that I have ANOTHER headache!!!
  • The parts of my life, of me that I've lost over the years.
  • Not being able to do what I want to do.
  • It can happen at any time. No matter what you are doing. Driving, at work, during your wedding.
  • Life goes on without you.
  • As a single mom my kids depend on me and I can't be there for them when I am suffering.

My biggest frustrations are work-related:

  • Losing my job.
  • An employer who doesn't believe you have anything wrong with you- even with medical evidence.
  • I try very hard to do a good job at work, but it's very difficult when I'm struggling so often just to think straight.
  • I'm forced to use vacation time when I cannot work.
  • My Husband having to get a second job to pay for doctors, meds, treatments, because I can't work.

It frustrates me that it affects how I function:

  • The attacks are completely debilitating.
  • The fear of how long it will last, and and that only aggravates it...
  • Wasting so much time being unable to function properly, particularly when there is so much I need and want to do.
  • I don't have a "normal". I just have "what's next?"
  • Even after the event is over, there is a post migraine feeling that leaves me emotionally and physically drained.
  • The way it disables me.
  • Trying to hide it and move forward thinking nobody notices it.
  • Losing control of your body and therefore life.
  • Not being able to think and be productive. When a migraine starts, all other plans stop.

Medical issues frustrate me most:

  • Being told you are over using medication but no support from your neurologist.
  • It irritates me when the nurse always asks me from 1 to 10 how would you rate the pain.
  • When you build up a tolerance and have to change meds.
  • Lack of research.
  • Lack of activism.
  • Every doctor I go to thinks I'm a druggie!
  • Not knowing if the meds will work this time!
  • Imitrex comes in little blister pacts that can only be opened with scissors. When I have a migraine the last thing I want to do is go hunt down the scissors.
  • When the doctor's not taking your pain seriously.
  • When nothing works!
  • The medication is highly expensive.
  • Having to go to the emergency room and they treat you with Tylenol.
  • Misdiagnosis, debilitating symptoms, prolonged episodes, contributing conditions. All related.
  • Having to suffer because I can only have a certain amount of medicine per month!
  • I have tried everything and can't get them to go away completely.
  • It's so difficult to get rid of it, unless you visit ER.
  • Medications that work once or twice then not again for weeks.
  • For me it's the doctors. First they're hellbent on being the one who's going to cure me and then eventually they all give up. Doctors are one of my triggers.
  • The most frustrating thing has to be that there's no cure.

Triggers are the most frustrating:

  • The most frustrating thing is mine seem to be primarily triggered by oncoming wet weather.
  • Knowing if the light from an emergency vehicle hits me in the eye at night, I will soon have a headache.
  • The uncontrollable triggers...barometric changes and hormones.
  • Having to smell a trigger smell like one whiff of cigarette smoke or strong perfume.
  • Antibiotics that trigger migraines
  • I have a tooth on the top row of my mouth that will start hurting which triggers the onset of a migraine.

What do you think is most frustrating? Please share in the comments! 

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