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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! 

Comments

  • Stancornett
    7 months ago

    I have had migraines so long and am affected in so many ways but what bothers me the most is losing my temper more easily. I do not like it because it causes me to lash out angrily at my wife and my furbabies. I do not like the feeling of my emotions being out of control. I usually give myself a timeout when I snap at my wife and furbabies. It is one of the signs a migraine is coming on for me. Thank you for providing this outlet for us to talk about our struggles.

  • agedsufferer
    7 months ago

    That I have so very many different pro-dromal symptoms: nausea and vomiting, lights glowing; zigzag/rickrack in my vision; pain on the left side of my nose, vertigo, ataxia, etc. At times I fear I am having a stroke.
    If I have the migraine for a few days or many days, then the medications that initially relieve the migraine, cause rebound headache or side effects like numbness in my feet and hands.

  • msmaryb1954
    7 months ago

    It frustrates me most that my loved ones and plans are affected: This is not how I expected my retirement to be. I had plans to finally REALLY clean my house, decluttering, & doing all those creative things I planned to do. I lose 9 to 15 days per month because of the hangover symptoms.

  • Joanna Bodner moderator
    7 months ago

    First I’d like to say congratulations on your retirement! Have you been now for a while? I am however so sorry to to hear how difficult things continue to be for you. Taking care of you & being gentle especially during the hangover phase certainly needs to be a priority, but I understand that is not easy as everything else falls by the waist side. I did want to share in case you were interested, but we have a forum page (sorry if this has already been shared with you) for those that are 50 years & older living with migraine. Understanding that your experiences are much different than say someone maybe more recently diagnosed. Here it is if you’d like to take a look. – https://migraine.com/forum/fifty-years-older/. Know we are always here to lend an ear.Warmly, Joanna (Migraine.com Team)

  • tammay
    3 years ago

    My biggest migraine frustration is nausea. There are times when I think I could handle the pain if it were just the pain but the nausea that comes along with it just kills me. The irony is that this is something that only started in my 30’s. Prior to that time, I would have migraines without nausea. So not sure if my stomach has just gotten weaker or what :-(.

    Tam

  • debwilton
    4 years ago

    I agree, period! Last night I went to the after hours clinic and was treated really well but when I read the paper that gave my diagnosis, it said, “Acute recurrent migraine headaches- poorly controlled.
    I’ve suffered 16 yrs with chronic migraines!
    I’ve tried…
    Every drug you can name
    Aqua therapy
    Physical therapy
    Botox injections
    Imitrex injections
    Chiropractic work
    Can’t afford the biofeedback program
    Can’t work because no one will hire me, still don’t know if I could
    ETC
    Migraines, the invisible, inherited on my part, disease

  • bluebird
    4 years ago

    After years of chronified Migraine with aura, I get really disappointed if I have had a few hours or days of pretty good functioning and then get hit hard yet again. Those precious good times remind me of Me in Wellness. And I feel like the thread connecting me to my creative generous joyful Self gets stretched thinner with each return to the land of too many symptoms. Especially after a visit to the Internist who rejects what the Headache specialist has to say.

  • bluebird
    4 years ago

    Meditation, yoga, water aerobics when I can. Practicing self care, self compassion, acceptance, loving kindness,
    being the best I can be in any moment…but I still get tired.

  • BethBlue
    4 years ago

    The most frustrating thing to me is that I haven’t worked for ten years. Therefore, I’ve lost that much in retirement savings, income, medical benefits (thank goodness for my husband’s benefits), and the self-esteem of my own accomplishment. I feel like a complete loser. What’s worse is that I think my husband has finally lost his patience with the whole situation, and is unwilling to put up with it much longer. Who can blame him? I’ve finally applied for disability, been denied, and am currently awaiting my appeal hearing. We are both about to turn 55, and I’m terrified for our future. What’s to become of us? My symptoms haven’t abated at all.

  • Hope81
    4 years ago

    The most frustrating thing is everything. There is no “cure”. You never know when or how long a migrane will last. There are so many medications to help but some only make it worse or the side effects are awful. Ive been down for 5 days with the worse migrane ive had. Ive had migranes for 15 years and none of my tricks are working. The ER Costs too much money and all they do is give you pain killers and send you home.

  • Ujima Moore
    4 years ago

    First, thank you for this article because it affirms that I am NOT alone or the only person experiencing these issues. Not only can I relate to practically every bullet point in this article I am currently into the second day of a migraine that crept up on me after going pain free for a couple weeks. I think at this point in my life one of the most frustrating things I can identify on a long list of issues is the fact that I had to hide how often I was experiencing a migraine so that I wouldn’t come under attack by employers or experience the “oh you have another headache” eye roll from people in my personal life. I would take work home and work on weekends to ensure I never missed deadlines. Despite blindness, vomiting and looking like I was just hit by a freight truck I always followed thru on personal commitments in an effort to be trustworthy and honor my word. All of these efforts often lead to emergency room visits straight from work, having to pull over on to the side of the road because I could not see or laying down in my office after hours even though I really wanted to be home in my dark little cave. I am proud that I am at a point in my personal life where I don’t care what family, friends or acquaintances think when I have to protect my health or I am experiencing an attack. My well wishes and prayers are extended to my fellow migraine warriors.

  • mygrainetoo
    4 years ago

    Check your vitamins and supplements!

    Yeast is used for some B vitamins so I now know to screen for yeast-free vitamins. Only 4 things give me the migraines that I recently experienced on the multivitamins I was taking – aspertame, too much calcium, yeast and malted barley flour. A good online screener for yeast-free, gluten-free and other possible triggers when researching vitamins, supplements and dietary aids is vitacost.com. Not to advertise, but we need all the help we can get!

    I do have a close friend who took my unusable multivitamins and likes them, but best of all I’m not going back to a severe elimination diet trying to figure out what ‘new’ trigger I might have. Good luck to you all1

  • Teresa
    4 years ago

    I share many of the complaints already listed, but I have a few of my own as well.

    My Mom, who also suffers from migraines, but not to the extent that I do, still tells me that if I had a normal sleeping schedule, I would not get them so bad. I do not work now, and so I normally stay up at night and sleep during the day. I worked many years during the night shift, and it is the time that my body is comfortable with. But I did have a “normal” day job for several years before I had to stop working completely, and guess what…I still had migraines. It is what drove me to quit in the first place.

    Trying so many different types of prophylactic meds, but the only ones that work have horrible side effects.

    Having doctors that do not pay attention and try to put me on high blood pressure meds as a prophylactic, even though I have low blood pressure and if they put me on those meds it could make me black out.

    How my neurologist’s office refuses to put up a sign telling people that they cannot wear copious amounts of perfume or cologne even though most migraine sufferers are sensitive to smells (and I have asked them several times). The nurse actually borrowed another doctor’s room once because a patient had stunk up the room so bad with his cologne that she could not get the smell out.

    How my insurance company will not authorize any alternative treatments such as nerve blocks because there is not enough evidence that it works. How can we get evidence if no one can try it?

  • Holly H.
    4 years ago

    Aura: 24/7 aura, Alice in Wonderland aura, multiple aura sizes, shapes, moving, undulating, flashing, electrical effects constantly going on all at the same time; trying to sleep through aura and trying to see through aura. Now with the additional ocular migraines on top of the constant migraine, the aura has intensified (more and faster flying shapes and brighter lights), and it is even more life-altering than before because my ability to see at all has deteriorated accordingly.

  • Ann
    4 years ago

    The most frustrating thing about migraines is it’s a woman’s disorder (mostly) and nothing will ever be done to investigate the genesis of migraine (and I don’t mean triggers). The basis of my argument is: sexism in the drug and medical profession. Why is this neurological event occurring? What part of the brain is responsible and what can be done to eradicate it. Drug companies use men in their trials so the dosage, type etc. are not geared to a woman’s body anyway. AIDS, ED and other male disorders are always and always will be in the front of the class when a cure is sought. That’s why it’s the most frustrating to me: it’s hopeless. Without hope one ceases to live….

  • Karen
    4 years ago

    The most frustrating things about my migraines are : 1)I feel like I am letting my husband and family down because a lot of the things I used to enjoy doing with them are now out of the question because of my most common triggers (bright or flashing lights and loud or recurring sounds); 2) People always telling me to do this and try that; 3) People telling me to just “get over it”.

  • Janet
    4 years ago

    Oops, forgot to add along with the flashing lights that are a trigger for you and me..ceiling fans are a huge one. If I’m luckynenoughntombe in a restaurant we have to pick searing where I can’t see the ceiling fan or leave
    🙁

  • Janet
    4 years ago

    Yes..”get over it” couldn’t you just slap those people silly!!!!
    They don’t understand we are robbed of simple things that most take for granted. Feeling good is a distant memory.

  • Janet
    4 years ago

    Not to discount all that was written in the fabulous article..because all pertain to me..the most frustrating for me is my immediate family after a lifetime of migraine disease…turned chronic so many years ago…my family is still ignorant and completely unsupportive of this illness. Most recently my soon to be 33 year old son said it’s too depressing to be around mom….I’m so glad we moved 3,000 miles across the country to live near him and his new family at his request….NOT…back to faking when possible and have decided to have some distance from the child who once was my closest friend.

  • 4 years ago

    I can think of hundreds of examples on What’s The Most frustrating Thing About Migraine.
    I can sadly relate to all the examples already stated.
    A few frustrating things for me is:
    My doctors won’t try another med when one or more is not working. (My insurance is even worse…UGH!)
    Being treated as if the pain is all in my head.
    (I avoid going into the doctor for this reason.)
    Being in so much pain, I react harshly to my husband.
    No one will hire me knowing I have migraines and Oculosympathetic Palsy( Horners syndrome) which causes a constant severe migraine on my left side on top of my regular fire breathing migraines.
    Having to hide when I am in so much pain, because it causes more physical pain to think.
    Being misjudged poorly on how my pain looks on my face.
    I guess every detail really, about these life stealing migraines is something I hate.

  • Maureen
    4 years ago

    The most frustrating thing is that I look like a lazy bum, and when I am in my intractable phase, I begin to feel like a lazy bum. It is common for me to be able to feel almost okay if I sit very still and do nothing. so then I get up to do something and the pounding begins again. So, I go back to my post at the end of the couch. Pathetically, it is almost better psychologically when I am driven to my bed, because at least on the outside, I must appear sicker… unless everyone just thinks I am a lazy bum… and the frustration cycles continues.

  • PollyWolly
    4 years ago

    Two words. Dry Mouth.

  • amygenie
    3 years ago

    Vertigo. Don’t know left from right. Nosebleed. Blurred vision making reading difficult. I’m lucky I don’t vomit but don’t want to eat anyway.

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