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What Life With Migraine Really Looks Like

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June is Migraine Awareness Month, but simply sharing facts about migraine doesn’t offer a clear picture of a life lived with migraine. I offer my experience with chronic migraine to help others understand what migraine really is.

Migraine is lost days, weeks, months and years.

Migraine is expensive, both to treat and to prevent.

Migraine is missed work days or the inability to work at all.

Migraine is ugly – swollen eyes, bed head, vomiting, messy houses, wearing the same clothes for three days and teeth that go unbrushed.

 

Migraine is kids having to care for themselves all day when mom is in bed.

Migraine is cereal for dinner again.

Migraine is cancelled plans.

Migraine is your child explaining what “chronic” means to his class, using his mom’s headaches as his example.

Migraine is fear of leaving the house.

Migraine is dark rooms and closed blinds.

Migraine is wearing a hat and sunglasses all the time.

Migraine is “Please don’t walk across the floor because your footsteps feel like nails in my skull.”

Migraine is strange side effects from medicines that were never even intended to treat migraine.

Migraine is genetic, which doesn’t seem matter until your kids are struggling too.

Migraine is wearing out the elastic straps on all your sleep masks.

Migraine is feeling like you depend on your husband too much.

Migraine is an intense hatred of the perfume counter at the department store.

Migraine is buying all unscented products for your home.

Migraine is pretending to be fine, because discussing pain makes everyone uncomfortable.

Migraine is fear of fluorescent lights.

Migraine is lonely.

Migraine is observing, rather than participating.

Migraine is hearing, “Have you tried ______ for your headaches?”

Migraine is repeated phone calls to see if your insurance company authorized your treatments again.

Migraine is avoiding the emergency room at all costs.

Migraine is expending all your energy on surviving pain and having no energy for anything else.

Migraine is watching the healthy people around you and longingly remembering your former pain-free life.

Migraine is thinking, “Is this new symptom migraine-related?”

Migraine is praying a ton because of the great amount of time with your eyes closed in the dark.

Migraine is ice packs – sometimes several at a time.

Migraine is massaging your head so much, you rub off all the skin in spots.

Migraine is cursing, because even though you don’t normally use those words, they really do help relieve pain.

Migraine is being impatient with your kids and then feeling guilty about it.

Migraine is missing out on making memories.

Migraine is hell.

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Thinkstock photo via cyano66.

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13 Emotions Caused by Having Chronic Migraines

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With June being Migraine Awareness Month, instead of focusing on my physical symptoms, I am going to share some of the emotional symptoms.

1. Fear

The pain is so intense…Is something else wrong? Is my brain being permanently damaged from the constant attacks? Are the medication side effects going to make me feel worse? Will I never have my life back?

2. Frustration

I thought I was starting to feel better…Then I wake up to a new day in pain and sickness. I never having a waking minute of feeling normal. Why do the medications not make me feel better? I’m always having a hard time explaining what I’m going through because my symptoms are constantly changing, waxing and waning with no rhyme or reason. There’s constant uncertainty due to the unpredictability of this disease.

3. Anxiety

Not knowing how you will feel one day to the next making it almost impossible to make plans. Concerns of driving or going in public due to vision disturbances and dizziness. Fear of food exacerbating symptoms. Worry over weather changes and trying to avoid the sun. Concerns over employment, finances, and never ending medical bills.

4. Sadness

I want my life back. Not being able to enjoy all the things I love. There are so many things I want to do. I want a cure.

5. Grief

I miss the person I use to be. I don’t want to be a burden to my loved ones. I want to be able to be there for others. Life is passing me by.

6. Anger

I have no control over this beast!

Why can’t I make it stop? Why is there not a cure?

 

7. Confusion

What caused this chronic nightmare that has taken over my brain and body? Why can’t I think straight? My brain feels like mush.

8. Loneliness

No one can understand what I’m going through. Hours upon hours of being alone. Trapped within my illness.

9. Depression

I am worn out. I’m mentally, physically, emotionally, and spiritually fatigued.

10. Thankful

For the love and care I receive from my wonderful husband and mother. The exceptional support I receive from coworkers. The medical professionals that try their best to help me find relief. For fellow migraine warriors that share their experiences, support, and continue to push forward.

11. Hope

For greater awareness that is necessary for funding and research.

For new treatments to help symptoms become manageable, for ultimate remission

12. Determination

I will keep fighting to get my life back! I will push forward even when it’s hard to lift my broken body. I will keep seeking knowledge, treatment, and support. Someday I will be knowledgeable and strong enough to help provide advocacy to others that are struggling.

13. Acceptance

This is a chronic neurological disease that I did not cause. It is part of who I am now. I will take pride in the small victories knowing I am doing the best I can. I will experience joy in the beauty and love this life still has to offer.

We want to hear your story. Become a Mighty contributor here.

Thinkstock Image By: LanaBrest

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To the Loved Ones of Those With Migraines: Please Be There for Us

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Yesterday evening, while enjoying a quiet afternoon of watching TV with my long-distance partner and his daughter, I suddenly didn’t feel so great so I went and laid down. I got worse and worse. I didn’t want to get up in case I was sick and I had a feeling my medication wasn’t working, so I sent him a message. 10, 20 minutes go by. I send another message. Finally he replies, “Have you taken your medication?” I replied, “Yes.” He then replied, “OK, sorry.”

 

I went through many emotions. I had gone through so many migraines alone back home. I was hoping and praying just once I wouldn’t have to go through this alone. So I sat there for a while longer, hoping and praying the medicine would work. A while later, he came in for a few minutes. Then he went and did other stuff. Then his daughter and the new dog came in. I explained I wasn’t feeling well. She asked if they could just sit with me. I said of course. The dog jumped on and sat right next to me. Maybe to comfort me.

I wanted to write this article so maybe a partner or a family member of someone with migraines will read it. Understand that yes, we are struggling when we go through a migraine, but it isn’t something to be afraid of and run away from. Ask if we need anything, maybe grab us some water, some plain food. Sometimes all we need is for someone to come and sit with us.

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Thinkstock photo via AntonioGuillem.

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What I Wish Neurologists Knew About Patients With Chronic Migraine

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I understand I’m just a file. I’m a face and a file amidst hundreds of other patients. I’m a mere a blip on your radar. Your day is busy, full of befuddling cases and complex mysteries that delve far beyond my comprehension. I cannot dream to do what you do. If you’re a neurologist, you’ve studied the brain and the labyrinthine system of nerves that weave in and react throughout the body. If you’re a headache specialist, you spent even more time researching and understanding migraine fundamentals beyond my understanding. You’ve seen how the brain lights up and reacts to stress, over-exertion and high levels of histamines. So why do I feel that you understand so little about the experience?

What you don’t understand is this: quite often, you’re our only hope. While we’re just 30 minutes to an hour on your schedule, we patients have waited for this time slot – eagerly preparing for it, anticipating it, outlining questions and reviewing our most recent reports from Migraine Buddy. We hope (sometimes fruitlessly) we’ll have our wits enough about us during the appointment so we can remember a modicum of what was discussed. Perhaps we’ll take notes, or ask a family member to join us so important details aren’t missed.

Your lights are too bright. Why is it that the neurology offices always have fluorescent lights? If we’re truly lucky, one will flicker. Haven’t you already learned those bulbs are too grating, too triggering? Shouldn’t that be migraine lessons 101? Or perhaps this is a purposeful design conspiracy, installed so you can see just how quickly migraine kicks into gear and rears its ferocious head. Sometimes we wait up to six months to sit under these fluorescent lights. Why don’t you have a lamp instead? A nice dimly-lit lamp that emits a soothing rosy hue. Perhaps we would be better able to focus and participate if your office were more accommodating. Don’t you know? We waited six months to be here, to sit in this room, on this hard chair…the least you could do is have a proper lamp.

 

I apologize for going off topic. Often migraine does that to me. Because my experience is a physical and experiential affront. Migraine is not polite. It does not wait for the appropriate moment to enter the room. Migraine did not read The Miss Manners Book of Etiquette. Migraine is rude and brazen and crass. It’s disruptive, interrupting conversation with staccato-tinged language, tripping up our words with aphasia, seizing the moment with flashing hallucinations and tinnitus that hums constantly in the background. Do you mind? Yes, that trash can right there. I need it immediately. Because migraine does not wait for the bathroom. Migraine does not wait for the toilet or a closed door. Migraine is rude.

Oh, I promise I prepared for this appointment. I wrote out my questions and printed my reports and practiced my circle breathing while waiting 35 minutes in the waiting room. I brought my rescue kit, my peppermint oil and Zofran and Biofreeze and topical marijuana. But, you see, someone out in the lobby was wearing a fragrance. It was a saccharine vanilla affront that crept its way up my nose, disrupting the fine balance I created in order to appear normal. And, I know, I know: I’m not your only patient (I may not be the first one to puke in your office today), but you’re my only hope. Your words hang on my lips for weeks, months. I’m just an hour on your schedule, but your decisions affect my livelihood, my future, my day-to-day.

My body is your battlefield of diagnoses, miscalculations and medicine trials. I am your willing guinea pig; poke and prod me full of botulism before sending me on the way to misguided hope. I’m a supplicant to the alter of new-fangled pharmaceuticals and mild-mannered lab coat condescension.

What you don’t understand is your words hold power. Last time you promised I’d feel better, that I’d be back to normal before I know it. You make migraine sound so easy, so simple. If it’s so easy and simple, why does it cost our country billions of dollars a year? Why is my migraine so bafflingly different than my friend’s migraine? And why are you calling it a headache? This is not a headache. This is a full-body assault. When did Webster’s and its hip and sassy posturing add vomiting and blindness to its definition of “headache?” Because last I read “headache” meant a pain in the head. “Headache” is a gaping understatement for this hallucinogenic and sometimes paralyzing experience.

Your words have power. Your prescriptions have power. We hold fast to the promise of feeling like our old selves again and you effectively sell that promise with the rip of your prescription pad. Why do you make it seem so easy? Because the truth is that while chronic migraine is easy to diagnose, it is not easy to treat. Too many of us have been failed by treatments; too many of us have been shuttled from one office to the next, hoping for a more straightforward diagnosis because anything would be better than the migraine swamp. Because what so many of you forget to explain is that chronic migraine rarely goes fully dormant.

We may learn to cope with the symptoms, to ignore the constant buzzing in our ears or that fuzzy gray blur that obstructs whatever may be present to the casual eye… We may learn to better handle vicious migraine attacks, but that doesn’t mean we’re cured. It doesn’t mean we’re back to our old selves. It simply means we’ve accepted a chronic disease and have learned how to hide how disruptive it actually is. We’re not truly better, we’re just better actors.

So next time you pull out one of your charts, don’t perpetuate the migraine miracle myth. Be honest with us. We can handle it. By now you should know that migraine patients come from tough and sturdy stock. Treat us with the respect we deserve by being honest and setting real expectations. Warn us of side effects. Be open to alternative treatment like elimination diet and cognitive behavioral therapy. In fact, encourage it. Research and advocate for these therapies. Listen to us. Consider a treatment plan beyond Topamax. Why do all of you immediately jump to prescribe Topamax? Out of the hundreds of off-label treatments for migraine, why is it always Topamax? And finally, remember we’re human, just like you. We have feelings and fears and the consuming desire to return to a slice of who we once were. We want to succeed, even if that means simply improving our quality of life. And we desperately want you to be a part of that journey.

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Thinkstock photo via Minerva Studio.

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The Insecurities of a Chronic Migraineur

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Coping with chronic migraine is painful, frustrating and lonely. Most people who have never had debilitating, throbbing head pain — or maybe it’s been too long to remember — do not understand what it is like to avoid the world in every way possible on most days. Sometimes, it’s just not possible. Sometimes the pain is so severe a trip to the ER is undeniable.

There are so many migraineurs who seek out help at the ER needing quick relief for such a long-lasting agony — even if that relief is only five minutes long. The thing is, sometimes the ER lights, noises and smells can aggravate the migraine even further. Sometimes the doctor isn’t as understanding as you would need. It’s the toss of a coin – you never know if you’ll get a doctor who can empathize with your situation, or one who feels you are a drug-seeker and faking symptoms. Unfortunately for those with painful conditions, like migraine, we are sometimes not taken seriously and not given the attention we deserve.

As time moves on and migraine becomes part of your daily life, many insecurities also move in, smelling up the place. So many insecurities, like dirty socks overflowing the hamper. If you’re a parent, you become insecure about the type of mother you are becoming. If you’re a pet parent, you worry about who will feed your dog on days you just can’t move. If you’re in a serious relationship, you worry about meeting the needs of your partner both sexually and emotionally. You may worry about what type of employee you are becoming and you might feel like you’re letting your company down.

 

Have you ever felt like a bad patient to the doctor or ER? Why would anyone feel insecure about visiting the hospital if they are there to make patients feel better? Patients visit their doctors and hospitals to get medical care and help them find peace. After so much time spent visiting the same doctor or multiple visits to the same ER with head pain or various other neurological symptoms due to migraine, doctors may begin to lose empathy or their patience may start failing because their treatment is not working. Frustration from the patient leads to an angry patient, which leads to a reluctant doctor. This is understandable on both parties, but sometimes there is just no solution. It might just be time to find another doctor, another set of eyes, ideas and a fresh start. If this happens multiple times, though, you might become insecure and worry about starting all over again, thus repeating your symptoms over and over again to many doctors and specialists.

When a patient jumps from doctor to doctor and they don’t keep records and dates, it’s difficult for new specialists to know what might work. Keeping detailed records of doctors, medications, dates and places will most likely mean a happier, more willing doctor. A willing and understanding doctor will lead to a less frustrated patient and might make you feel like the doctor is actually taking you seriously.

On the other side of that, take into consideration the ER doctor who doesn’t believe patients immediately once they see “migraine” on the patient’s history chart. Maybe you told the registration nurse at the ER you think you might have a severe migraine? The word “migraine” alone causes some doctors to roll their eyes or put you at the bottom of their list. I’ve seen it happen. Sure, the nurse will turn off the lights to help with photophobia, but most of the time, in my experience, it takes a good while before you are seen by the physician. Obviously, this is the case with most patients, whether there is pain involved or not. Unfortunately, for migraine patients, the head pain and various neurological symptoms are already heightened. Why else would you be there? Blood needs to be drawn and tested before any IV fluids and medications can be administered, something we can’t avoid, but an empathetic smile and a calming bedside manner always works best with pain patients and goes a long way.

Those of us who have battled chronic migraine for years already know what works for us. We know exactly what we need. Yet, there’s an insecurity to let the doctor know what helps us. Why? Because some doctors feel we don’t know what we’re talking about – they’re the doctors, not us. They know best and will give us whatever “cocktail” of migraine medicine they believe “always works.” When they find it doesn’t work with you, then they ask what it is that always does, upset and reluctantly asking your opinion. Frustration at its finest. The insecurity in this scenario is not being heard the first time. It may cause you not to speak your truth in order to avoid the nasty looks and arrogant replies from the doctor. The apologetic looks from the nurses as they follow the doctor out of the room.

When I am forced to visit the ER due to severe migraine symptoms, I start to panic and anxiety is now part of my symptoms once I am placed in a bed. Why? Because I have no idea who my doctor will be, whether he will be empathetic to my situation, if he will listen to me, and/or if he will consider my past medications that work. Insecurity of whether or not he will decide I am a drug-seeker because I feel like my pain level is a 10 that day. Will he/she even believe my pain level is at an eight, and I just can’t handle it?

Insecurity: It’s often part of a chronic pain condition. It will be there even when you aren’t paying attention. It’s part of your daily thoughts, even when you aren’t feeling that much pain that day. Why? Because the “what ifs” can plague our minds. What if I do too much today and trigger a migraine? What if I trigger a migraine and have to go the ER? What if this migraine is just too painful and I can’t peak outside my covers because the light is too bright? What if I can’t make dinner and my husband is going to come home too late to feed the kids? What if I’m late to work, again, and I get fired this time? What if showering makes me so tired I can’t go to work at all? I can’t just “suck it up” – it’s not that simple.

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Thinkstock photo via artant.

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Why I Stopped Looking for a Migraine Cure

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There’s a woman on TV. She’s standing against an illustrated bed, refusing to lie down. I hate that commercial. Every time the commercial plays, I silently vow never to wear ill-fitting, high-water khakis. Does society imagine that all people with migraine are this poorly-dressed? Or that we spend all day in bed, hoping to wave to cartoon animations of our neighbors? Why didn’t the stylist just call it a day and dress her in sweats?

Second, isn’t it weird that our country advertises prescription meds? Think about it for a moment: our televisions peddle out prescription promises and serious medical treatment, just as they do pre-owned cars or $10.99 specials from Red Lobster. Not only is it strange, commercials like this perpetuate the misguided promise that chronic diseases have a magical answer. Take this pill and your problems will disappear, just as quickly as a plate of baby back ribs.

 

Shockingly, the United States and New Zealand are the only two countries where direct-to-consumer advertising of prescription drugs is legal. No other country allows it. And, before you begin to assume I’m anti-prescription drugs, let me assure you I’m not. In fact, I’m all for researching treatment, discussing medication with doctors and being open to safely trialling various therapies. Furthermore, I benefit from Botox for Migraine.

What I’m against is the fallacy prescription drug commercials project. Treatment for chronic illness like migraine is an incredibly bumpy and winding road. Qualifying for Botox for Migraine certainly is not as simple as its commercial promises: first, patients must prove they have unsuccessfully trialled at least three preventative medications; second, patients must show they have at least 15 attack days a month. Even if patients prove these things, insurance companies may not approve treatment, leaving patients with no option but to pay the full treatment cost every three months, if they’re willing to move forward. To add to the conundrum, Botox for Migraine typically doesn’t begin to work until after its third or fourth treatment, leaving newer patients rattled with a sense of frustration and failure.

I remember when I first was denied Botox for Migraine. I sobbed for an entire afternoon because I truly believed this would be my miracle, my escape, my cure…and insurance had the gall to deny me the opportunity to live and be normal again? In between waiting for updates from doctors, I received well-intended text messages and emails from family and friends, “Have you tried Botox for Migraine?! It’s supposed to really help! My friend Sarah gets it and she’s been cured!!” I felt like such a failure, like a kid whose face was pressed against the window to an unattainable candy-crusted life.

And there’s that word. That evil little word that sits on the tip of almost every chronic migraineur’s tongue: cure. It makes it all seem so simple and magical. Take this and – poof! – you’ll be cured. Suddenly patient accountability and triggers drift away. Take this pill and your troubles will melt away. It’s as though we’re something broken that needs to be fixed, like a lamp or a zipper.

The fact is that migraine is far more complex than that. It’s a condition and disease that exists within a spectrum of severity. Some people only get one to two horrific flares a year; whereas others are hammered on a daily basis. And what’s difficult for chronic migraine patients to understand is that searching for a cure only leads to disappointment and additional stress. “I took my pill. I got my Botox. Why am I not cured?Why am I not as functional as my episodic friend? What’s wrong with me?” Nothing is wrong with you. You’re unique.

The truth is that neurologists and headache specialists still are befuddled by the migraine mechanism. They know migraine is genetic in 90 percent of their patients. They now know that nerves are involved, and possibly serotonin levels. But the switch, the trigger is different in everyone. Every migraine patient exists as a snowflake that requires individualized, multifaceted treatment. What works for me may not work perfectly for someone else. And while I appear to be back to “normal,” I still deal with migraine symptoms throughout the day.

Regrettably, pharmaceutical companies and the medical community glide over the complexities. I recall my past neurologist once saying, “Oh yeah, you’ll be back to normal this time next year.” It sounded so easy, so simple! What she didn’t explain is that my normal is vastly different than it used to be.  She also didn’t realize how damaging that promise can be to a chronic sufferer. What if you aren’t back to normal within 12 months? Did you fail? No, not at all. The treatment failed you.

I decided to shift my perspective during my search for a reduction in pain and for better quality of life. So I asked myself: What were the things I could control? Well, I could control my sleep schedule, my diet, my daily habits, my exercise routines and screen use. I could reduce my use of triptans and NSAIDs. I could study these habits and see how they individually impacted my life, for better or worse. And I then could continue to do more of what made me feel good, happy and satisfied. During this existential life shift, I signed up for every program NYU and UCLA offered me. Cognitive behavioral therapy? Cool, yes. I’ll do it. Meditation? Awesome. Give up sugar, dairy and carbs? No problem. No ask was too big. I became a medical kitchen sink.

During this time I continued to track everything…every symptom, pain location, quiver, moment of mobility loss. At times my obsessive behavior manifested in self-destruction: did that slice of store-bought bread trigger my migraine? Or was it the added “natural flavor” in flax milk? I had to learn to calm the you-know-what down. Focus. Identify foods and habits that help; stick with them and only focus on the positive. Look for improved quality of life, not a cure. Take thrill in a level-three migraine rather than lament not having a pain-free day. I stopped asking for a day without a migraine; I stopped looking for a cure.

Let me be clear: this does not mean I gave up. I did exactly the opposite. I started to have more faith in myself and my body’s strength and resilience. I stopped waiting for the proverbial white rabbit. By focusing on how to improve my quality of life and how to celebrate the little victories, I began to notice and experience progress. I became mindful of tiny accomplishments, like cooking with the overhead kitchen light on or making it through the grocery store without having mini-convulsions. Typically I would realize it after the fact, like a mild Oh Right. That just happened. Awesome. And after time, these mini-accomplishments built upon themselves until I had the confidence to do more. I started taking day-trips to neighboring cities. I tried new things and met new people. Suddenly my focus wasn’t on current symptoms but on future plans. My life started to feel richer and more exciting. I didn’t need a cure to feel like a success.

I can tell you right now I’m not cured of migraine. My migraine cycle isn’t even in remission. Migraine is in my genes and most likely will be passed down to any children I may have. Migraine most likely will be part of my day-to-day for the rest of my life. What’s changed is I’ve shifted my focus, improved my quality of life and reduced the frequency of severe attacks. Even now as I type this I’m experiencing pain severe enough to annoy me, my peripheral vision out of the right eye has completely grayed, my left shoulder is starting to seize up and my feet are completely numb. I could freak out about my symptoms…or I could look back at what I’ve just typed and celebrate the fact that my word recall is back. My sentences make sense (or at least I hope that they do). My memory is back. I was able to ignore my symptoms long enough to type 1,435 words. And that’s worth recognizing. Yes, I’m pretty close to being satisfied with my quality of life (the missing piece is a job, bet you didn’t guess that). And for now that is a massively satisfying achievement.

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Thinkstock photo via Viktor_Gladkov.

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