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There is no condition of such magnitude - yet so shrouded in myth, misinformation, and mistreatment - as migraine.
— Joel R. Saper, MD, Chair, MRF Medical Advisory Board

For Sufferers
Treatment
Migraine Stories

Almost everyone either knows someone who has suffered from migraine, or has struggled with migraine personally. For many sufferers, migraine interferes with their ability to function in everyday life, whether that is going to school or work, caring for family or attending social functions. Here are some of their stories.

The stores included here represent individuals’ experiences and are not meant to provide treatment advice. Please do not initiate or change medication without consulting a physician.

»Linda has learned to wait for her migraines to end

»Stina’s migraines have taken over her life

»Betsy suffers from hemiplegic migraines but still tries to see the silver lining

»Chelsea works hard to describe her migraines to non-sufferers

»Anna Maria puts herself in Zombie mode because even thinking is painful

»Melonie’s symptoms are never the same

»Carol finds relief by avoiding an unlikely trigger

»Ellen thought she was having a stroke at first

» Nikki’s severe pain challenges her will to survive

» Victoria hopes for a cure

» Diane’s level of pain is always plus 10

» Brigit‘s challenge is not letting the pain control her life

» Michael has trouble getting help in the ER

» Darlene has learned what triggers her migraines

» Sandra suffers from migraines which do not respond to most medications

» Denise writes poetry to express her experience with migraine

» Joanne, has found relief from her migraines by identifying triggers

» Renee has started a support group to connect with other migraine sufferers

» Nicole, age 26, has found some relief from her migraines but continues to hope for a cure

» Migraine Chick uses her artwork to express her experience with migraine

» Rhonda’s first migraine helped her understand the pain migraine sufferers endure

» Christine hopes to become a physician so she can conduct migraine research

» Patrice’s life has been taken over by migraine

» Kimberly’s family is “cursed” by migraine

» Kelly, age 24, has found relief by taking control of her migraines

» Allan  experiences intense auras before his migraines

» Candice, a longtime sufferer, wants her migraines taken seriously

» Nancy, age 61, has lived with migraine since high school

» Michael vividly describes his life as a "citizen of migraine nation"

» Debbie wants others to see the person behind the pain

» Candi has to manage her migraines without health insurance or a support system

» Jerri draws strength from knowing others understand the pain she suffers every day

» Fran, age 47, has yet to find relief from migraine

» Takia has been in and out of the emergency room since the age of four

» Jennifer has been unable to return to work for a year

» Elizabeth’s migraines affect her career as a classical musician

» Halli’s painful migraines began at the age of three

» Samantha has learned to take migraine one day at a time

If you have a story about living with migraine that you would like to share with us, please email us at [email protected].


Linda’s Story

My migraines started when I was 18 and had just started birth control pills. For the most part they have become more severe with time.  I am now 55.

When a migraine starts, I feel a twinge in the back of my neck, the slight squeeze of queaze in my belly, tired, and ever so slight – a pressure at my right temple.  Alone, any of these would mean little – together it’s absolute and definitive.  So depression and irritability then swoop in as well.

My thoughts initially run to denial – maybe it’s not a migraine. Then immediately to: No!!!! Why me?  Why now?  There is always a list of to do’s that my mind flies to – what will happen to the world without me? Because this all means I will soon be gone, ripped from my universe, for 2 – 4 days.  I try to prioritize – what can I do quickly now that I was planning to do tomorrow?  That MUST be done?  Who do I need to call and cancel?

The whole time that I am trying to plan, my brain is becoming less and less functional.  I try to eat and drink – knowing I will become dehydrated soon – and select food that won’t be terribly unpleasant on its way back up.  I’ll be tasting it again soon, in a bad way.  Saliva begins to work its way into my mouth.  Eventually it becomes so terrible tasting, and so profuse, that I will have to give up the fight, and climb into bed with a spit bucket, knowing I won’t be getting out of bed for a long time.  If I swallow, I will certainly throw up – and constantly.  If I don’t swallow the bile that fills my mouth, if I spit it out, then I will also certainly throw up – but not as often.  

By this point my head is throbbing, pounding, sometimes splitting – the intensity comes and goes in waves, and will do so over about the next two days.  The nausea becomes constant, also in waves – between “I feel sick” to “I’m going to throw up soon” to “I wish I would frigging throw up now”  to “why did I wish I would be doing this” to “I feel sick.” There is no relief from the waves of nausea.  There is no relief from the waves of pain unless I sleep.  Sometimes sleep overcomes me – blessed sleep.  I wake up to a drool soaked pillow and don’t care – just trying not to wake up – trying to recover that moment of relief.

Eventually the headache subsides a bit – though it often has a few more hours of nastiness that will return before it’s truly done.  The nausea and bile are the last to leave.  I crave food, I dream of eating and drinking.  It’s been days.  But I am too afraid to try to swallow anything, even the bile in my mouth.  Eventually I try applesauce or something else mild and sweet – and the relief that it may be over, washes over me.  But I am still utterly exhausted.  Walking upstairs requires a break to catch my breath.  It also brings back a bit of throbbing.  I feel as though I have looked into the gates of hell once again, and that changes one’s view.

I could maybe take the pain and nausea for a few hours, for a day.  But after that I start bargaining with the devil. Once, when rebounding, I had a migraine that lasted 6 days.  I don’t remember the details, only counting the days.  And I remember knowing, that if I had a gun in easy reach; I cannot say for certain I would not have used it to end the pain.

Now I know it will end, even though it lasts TOO LONG.  It’s still a distant light that part of me knows is there, and will come. After another day of regaining strength – I put it out of my mind and look to my life again.  I know I will have somewhere between 1 and 3 weeks before another visit to hell for another 3 days.   I get very good at telling myself maybe it won’t ever come back. Hey 3 weeks is a long time from now.  I hang onto the hope of reprieve.  It’s the only way I can get from here to there without letting it win.  

So I wait for it to end.


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Stina’s Story

It is after midnight. I am sitting in my living room, scouring the internet for any new information that might make my life better. The last hour or so I have been silently crying because I barely made it out of the shower. I am on yet another new medication in an attempt to prevent my migraines. Well, that’s not entirely true. I’m on a lower dose of a medication I tried 4 years ago, to see if I can tolerate it. Seems I can’t tolerate it at any dose. The drug causes me to lose sensation in different areas of my body. Just a little while ago, while in the shower, I went numb from head to toe and was terrified that I wouldn’t be able to get out of the shower. I wanted to call for my husband, but he was asleep, and I had locked the bathroom door, so I stood there in the shower praying the sensation would pass. It did pass, at least enough so that I could get dressed and go cry on the couch.

Even when I don’t have a migraine, I don’t get to feel normal. As I sit typing this, a portion of my face is tingling and my left foot feels as if it has fallen asleep. Sadly, I would be happy to accept this side effect, if this medication were actually effective at treating my migraines. Unfortunately, that isn’t the case. This is my third medication in the past 6 months. I just quit taking a medication that made me feel as if I were suffering from morning sickness all day, and before that I was on a medication that made me have suicidal thoughts…
 
My migraines first started when I was in the military at the age of 18. I’m not sure exactly what started them, but I suppose that isn’t really important. I just know that my life hasn’t been the same since. Since that time, they have steadily increased in frequency and intensity. My symptoms have grown stranger as well. It used to be that I would have a migraine maybe 3-4 times a month. Now, I have them no less than 4 days a week. They have essentially taken over my life. I find that I have trouble with my speech and sometimes feel as if I am actively losing my memory. There have been many nights in which I have been awakened in the middle of the night by migraines. Over half of my life at this point is run by migraine headaches.

I cannot bear taking anymore pills. There is no way to regain the past 15 years of my life, but I have to believe that the next 15 years will be better. There must be a better solution than what I’ve been trying. I cannot let another 15 years of my life be lost to misery.

Thank you for listening. I needed to share what I’m going through somewhere. I hope that my story gets better. I spend so much of my energy trying to be strong for my family and trying not to be a further burden than I already am to them.

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Betsy’s Story

I have had hemiplegic migraines since I was around 6. I was sitting in my house watching TV (I can still remember what was on that night) and went numb. I couldn’t string two words together properly. I was acting drunk and looked like I was having a stroke. I didn’t understand what was going on, but ended up in the ER. I remember being up all night in pain, with tubes, monitors and weird stuff on me. But all the tests showed that everything was completely normal!
 
I got migraines every 6 months like clockwork as a child. My parents handled them like they were an annoyance and obviously had been told by the doctor what to do when I had an attack. But a child with hemiplegic migraines? I realize now how scary it must have been.

My migraines scared people. I would suddenly look drunk or like I was having a stroke. Then I would get violently ill with sensory issues. I chose not to discuss my migraines much. When I had an attack, the school was generally kind. I had a good relationship with our school nurse. She was terrified the first time she saw me during an attack. I told her what to do and what to expect beforehand. She was awestruck by my patience, understanding and maturity for a 12 year old.

Through high school and college, many people didn’t understand that my migraines were real and serious. My freshmen-year roommates made my migraines a living hell, flashing lights on and off and blasting rock music at full volume. It was bad. One girl complained to the school that I shouldn’t have special privileges just because I have a headache. The problems got so bad that I was approved for a medical single for my sophomore year. I still got migraines, but learned that with a daily pattern of working out, eating and studying properly, I was able to control them. Even with the typical college life of partying and late nights, I survived knowing I could not pull all-nighters. It took a lot of discipline.

Since then, I have worked in politics and retailing. I have learned how to deal with the headache pain, and the nausea seems to have faded away. I still encountered managers who didn’t believe how bad my migraines were and companies that were unsupportive. I have dealt with migraines most of my life. They are still a pain, but I’ve learned to control them with 21 years of trial and error. Honesty is the only way I’ve been able to stay in the working world with them.

I realize now that my migraines have taught me how to be calm in bad situations, how to communicate effectively, and how to deal with things. I have learned to see the positives about them. I see and hear things better. I feel things more intensely than most people, and often joke that my migraines are like a reset button. They still suck – I just try to see the silver lining.

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Chelsea’s Story

I am 20 years old and have had migraines since I was two. My migraines were so bad that I became immune to Tylenol, Ibuprofen, Advil, and Aleve. I have gone to doctor after doctor, but they only look at MRIs and tell me that nothing is wrong. Then I found yoga, which helped to cut the number of migraines in a week.
 
My migraines can last up to 72 hours. I try to explain how I feel to my boss, friends, family, or anyone who doesn’t suffer, but they don’t understand. At the beginning of my migraine, I can’t talk, I can’t think, I am completely out of it, and I can’t understand what people are saying. I just want to go lie down for a bit. It gets steadily worse. All sound hurts and just needs to stop. I don’t understand why people can’t lower their voices, why they can’t do things more quietly. You know what it’s like when you’re in a dark room and someone suddenly turns on a light? The pain that comes as you quickly close your eyes is how all light feels to me. The hardest part to explain is the throbbing, stabbing, constricting pain in my head and neck. It is indescribable. The only thing that relieves it is no light, no noise, either a cool room or a hot compress, and rocking – moving the upper half of my body back and forth or rubbing my head in a circular motion. I can’t lie down, and I can’t stand up because it hurts too much. As sitting hurts the least, it’s the only option.

The only way that I can explain the end of my migraine is to suggest you think of a charley horse in your calf. You know the weird ache after it’s gone? That’s how my brain feels. And this is the worst part of my migraine. I know that the tiniest thing can set off a brand new migraine at this stage. I have to take another dose of meds and eat a little bit so I don’t get another migraine. I can’t sleep too much, and I can’t move too much. I need to act as if I have the flu and lie down doing nothing.

Throughout all of my migraines, I want to cry, go to the doctor and have him fix it. I want just a little rest for my brain. I haven’t really found anything that will make them go away. Most of the time, quick fixes are lies, and migraines like mine are debilitating. I wish I could say that I didn’t take as much medicine as I do because I am right on the line of the fear of overdosing, but I can’t take any less. I honestly would rather die than have the pain without the meds. The only relief is knowing I survived another one.

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Anna Maria’s Story

I remember my first migraine attacks around the age of 6 or 7 – the unbearable sharp pain on the left side of my head, nausea and vomiting. As a child, I used to imagine putting an electric drill to my temple to open a hole that would release the pressure. I remember withering with pain on the floor, crying that my head hurts and all the grown-ups looking at me with that "God this child is a drama queen" look. Even today at 52, it is such a vivid memory.
 
Every Saturday morning, I would go to the movie house to watch a double feature while eating
my favorite candy, and every Saturday afternoon I would have a migraine and puke myself silly.
Apparently, my love for movies was stronger than my fear of pain. My mother, who firmly believed that my migraines where induced psychosomatically, dragged me to all kinds of doctors to prove her theory.

I got migraines up until I got my period at around thirteen, when they miraculously stopped. They returned in my 20’s, but less intensely. I could function so long as I did not eat or drink a thing, not even water, because as soon as I did, the pain would strike double and I would get nausea. In my 40’s, my annoying life-long acquaintance, came back with a vengeance and is still with me today.

On my migraine days, I do not function. I put myself in Zombie mode by switching off my mind as even the process of thinking is painful. When I feel it rearing it’s ugly head into my world, I check the time. I know that for the next 24 hours, I will have to deal with it. Sometimes I cry from the pain, sometimes I convince myself that a migraine is necessary for my life, acting as a safety valve by keeping my system tuned. My heart goes out to all my fellow-sufferers. Hopefully one day in the near future, some amazing person will find the cure for this cruel and tormenting ailment that so many of us have been forced to live with most of our lives!

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Melonie’s Story

The first migraine that I remember occurred when I was seven. From about age thirteen on, I’d get a migraine two or three times a year until my mid-twenties. At that point they started increasing in both frequency and intensity. Now, at thirty-four, it’s rare to go a week without having one. I end up at the doctor’s office or ER at least once a month. Sometimes they last for seven or eight days, only to go away and return the next week.

My migraine symptoms are never the same. Sometimes the pain starts in my neck, radiating throughout my body and echoing with each tiny movement. Other times it starts in the back of my head and burns like water up your nose. I’ve also started getting ice pick headaches and nausea. Just two weeks ago I was throwing up so much I lost two and a half pounds in thirty-six hours. The pain is always constant. At least five days out of seven I have a migraine that requires me to take my meds or a shot.

I don’t have health insurance and am a stay-at-home mom, so paying for doctors and medications is daunting. And, it’s hard to find a medication that both works and I can afford. Sometimes I feel hopeless, as if I’m destined to live in pain for the rest of my life. Surely somewhere, someone can help. But here in rural Arkansas, my choices are limited. I’ve learned to deal with it most of the time, but toddlers don’t wait for migraines to go away. I dream of one day being free from pain: free to enjoy the fleeting moments of my daughter’s childhood and concentrate on filling her life with joy, not ridding myself of yet another migraine.

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Carol’s Story

Even as a young child I often had headaches, but since my mother had endured them for years, and the prevailing attitude seemed to be to wait it out, no one paid attention to my headaches.   As I got older, they gradually increased infrequency.  In my late teens and twenties, they seemed to be tied to my monthly cycle, and I would spend about half of each month trying to function around them while, eventually, taking care of my first child. At thirty, while pregnant with my second child, my symptoms got worse. I was about four months pregnant when I started having visual disturbances – flashing light patterns, immediately followed by partial vision loss lasting up to twenty minutes.  I would see half of everything or have gaps in the middle of whatever I was looking at. Next, I became unfocused and had difficulty absorbing information.  Then came the pain in my head.  While the pain wasn’t always intense, moving around too much or too fast would cause nausea, which also caused an intestinal reaction, and I’d be running to the bathroom.  After the birth of my third child, they became so constant that a neurologist sent me for a brain scan.  Luckily this scan showed no abnormalities, but my headaches  continued, even though I was now on medication.  I excluded all the known triggers or possible triggers from my diet for years, but still they continued.  After two years with no improvement, I stopped the medication and plodded on as best I could. 

Since bright light was a trigger for me, I wore sunglasses almost everywhere.  I restricted myself to local driving so that my familiarity with the roads would allow me to pull over if I sensed my vision might change.  Over time, I began to recognize certain precursors such as yawning, mood changes, and a sensation in my face and head that told me a migraine would be coming.
 I read everything I could about migraines, hoping to find something that would help.  For fifteen years, I tried eliminating triggers identified in the literature from my diet.  I was still plagued by frequent migraines. Then one day my husband brought home an article he found in a magazine that contained the usual information until the very last sentence. I am so grateful that I read it all the way through!   The last sentence referred to an uncommon, but possible trigger for migraines  – legumes  (nuts, beans, peas, etc.)!   This changed my life! Those foods had been a huge part of my diet for years, and none of the doctors or written information on migraine had ever mentioned legumes as a possible trigger. 

I have been mostly migraine-free for ten years.  I still cannot eat some of the well-known trigger foods  (red wine,  bologna, olive loaf, etc.) and, of course, the lesser known legumes.   Yet, there are many known triggers that don’t affect me. The impact of those many years of unchecked migraines on my life is incalculable, and if passing on my experience will help someone else, I am happy to share it. 

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Ellen’s Story

Let me start by saying I bought the book "Migraine" by Dr. Oliver Sacks not once but two times.  Yep, I bought the same book twice, a couple of years apart.  But I never read it. Because I realized I was terrified that just reading it would give me a migraine.  Only migraineurs (that’s us) can truly understand my "logic." 

I’m 63 years old and had my first migraine at age 26.  I was with my husband-to-be (now my ex) when it hit–I told him I thought I was having a stroke and we went straight to the ER, where the doc instantly diagnosed me with "common migraine."  Since this was 1974, there were no pharmacological treatments available except ergotamines.  But I couldn’t take vasoconstrictors.  I was on my own to deal with twice a month migraines.  No aura, just a vague feeling of unease and sometimes pain behind my left eye.  I called this "the premonition," which invariably led to a one-sided migraine that lasted a minimum of 24 hours, requiring a lot of vomiting and then going to bed in a darkened room with no light or sound except the white noise of a fan to block the outside.  Then would come the "aftermath" day, when I would have a miserable "regular" headache and feel half-dead.  Sound familiar?

This went on and on, affecting my two children, who had to suffer having Mommy go to bed and be unavailable to them, and the same for my then-husband.  I still feel awful about this.  Finally I hit menopause and amazingly the "vomit/bed" migraines transformed into what I call "walking migraines," like walking pneumonia.  These were terribly painful but there was no nausea and I could, with a great deal of effort, go out and go to work.  But it took a huge effort, and I was beyond exhausted at the end of the day.  The "walking" migraine also lasted about 24 hours and left me with a splitting headache.  This change in the nature of my migraines led me to believe there is definitely a hormonal component, at least for me.

I’m being treated now by a wonderful neurologist who told me during my first appointment, about a year ago, that he never gives up.  We’ve tried a number of things and finally have hit upon a treatment, which has knocked out the "walking" migraines.  However, I still get horrible headaches that last for days.  For these I take something else, which helps but doesn’t make them disappear.  However, I remain hopeful that maybe I’ll finally find relief. My heart goes out to everyone who suffers from migraines.  I think only we can understand each other’s pain.

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Nikki’s Story

I am 33 years old and have suffered from migraines since I was quite young, but chronically for over a decade.  For a good portion of that decade I have dealt with chronic pain by creating a facade of well-being to convince myself and others I could cope while at the same time taking out everything from my life that was not absolutely necessary to my survival.  I gave up my academic studies and my career of choice, convincing myself less pain would compensate for less passion.  Perhaps it did, but unfortunately, treatment for chronic migraines is never a long term solution.  It involves trying out numerous medications that never seem to last very long (if they work at all) and juggling medications to help with active migraines so that I do not hit a rebound headache.  For a long time I existed like this, and I survived. 

One thing no one says is that migraines kill.  You may not have a stroke, or seizure or heart attack, but with enough years of daily migraines, you will become quite indifferent to your own survival – if not actively trying to end it.  No one mentions that we have a far greater chance of killing ourselves rather than having a stroke.  Or that we would adamantly wish for a timely stroke just so we do not have to endure one more day.  I got to this point myself after taking numerous short term leaves of absence from work, which did little except make my work situation far worse and increase my level of guilt for not being able to sustain full-time work.  Unfortunately, pain is not sufficient reason to call in sick or to go on long term disability, or at least that is how we are treated.  Finally I decided calling in dead ought to do it.  Someone might think that this is terrifying to contemplate such a thing.  What was far more terrifying was surviving the attempt and realizing that absolutely nothing changes.  It was like I, as the patient with uncontrolled pain, had absolutely no vote in my treatment or my ability to work. 

How I was treated in the workplace (which ranged from threats of demotion to being fired if I called in sick to being forced to come in with a full blown status migraine), that treatment frustrates me and makes me furious.  Yet I can do nothing about it. Therefore upon my return to work, I have to tow the party line.  What enrages me though is the complete disinterest in the ER or with my doctor, such that I was simply expected to deal with such continual pain without any assistance or consideration for the strong mental and emotional price for enduring it.  I fear if chronic migraine patients are at such a risk for suicide we might want to reconsider how we are treating them because obviously something is failing each and every one of us.  It is not about ‘coping’ with pain, it is about pain management and our very survival.

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Victoria’s Story

I’ve experienced migraines since I was in 1st grade. As my age has changed, so have my symptoms. It really truly is a debilitating disease and has caused so much hassle and struggle within my life, especially in school. I have failed so many classes and eventually had to be home schooled because the public school administration wasn’t cooperating and my migraines were getting worse with the stress of it all. Migraines are so misunderstood by the general population, especially people who don’t experience them. I’ve been told so many times to just "deal and tough it out". These people obviously don’t understand a migraine isn’t like the flu or a sinus infection. It’s not something you can "tough out" and just move along with your day.

I’ve always hoped for a cure for migraines, and seeing that an actual research foundation has been dedicated to the sole purpose of migraine research brings tears to my eyes. Migraines are misunderstood and the public is so misinformed about them. I feel as if many physicians and scientists don’t see the significant importance and urgency in migraine research. Hopefully, with the support of your foundation, a cure will be discovered someday within my lifetime. Thank you so much for establishing this foundation and setting aside time and money for all of this. I’m sure you’ve provided hope for many sufferers out there.

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Diane’s Story

A year ago I sustained a head injury after being assaulted by an ex boyfriend.  I was struck with the bottom of his open palm to the middle of my lower forehead.  I have suffered with severe debilitating migraines, nausea, light-headedness, dizzy spells, sensitivity to light, noise and smells.  I have difficulty with speech when I am tired and tend to slur my words.  My entire face, skull, head and temples throb unbearably during a migraine.  I’ve tried physiotherapy, chiropractor, massage therapy, cranial sacral treatments, acupuncture, exercise, rest and healthy diet. I have a lot of trouble driving in the dark and am easily distracted when driving, also very nervous.  I’m always afraid that my ex will come back to harm or kill me.   I’ve been off work for the past year and am only now attempting a return to work. 

The migraines have increased in frequency and the level of pain is always plus 10.  I’ve tried many medicinal prescriptions and vitamins.  Nothing helps.  I’ve had MRI’s, CAT scans, X-rays, injections to the back of my skull to numb the area, and no bleed to the brain or concussion could be detected.  My doctor did diagnose concussion the morning after I was struck when I was in unbearable pain and had vomited during the night.

I have been told that I need to learn to live with my head injury.  To be honest, I don’t know how I can.  I can barely function, and my gradual return to work has been extremely challenging and frustrating as I try to relearn a lot of what I used to do without thinking.

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Brigit’s Story

I have had migraines for the past eight years and there are three challenges I face on a daily basis – feeling powerless, discouraged, and having a low self-esteem.  The overall challenge is not letting the pain control my life.
 
After living with migraines for so long, I feel powerless.  I feel powerless when a migraine is more painful than usual because I have not been able to find anything that really helps.  After a while, I start getting anxiety because the pain is so bad.  The anxiety often makes me shake.  Most of the time I do not realize I am shaking.  Even if my anxiety level is low that day, I shake with my leg, or tap my hand.  On the days my anxiety level is high, parts of my body shake or twitch uncontrollably.  On the days where my anxiety is really bad, I get panic attacks. It does not matter how many doctors I have seen, the amount of medications I have tried, or the amount of tests those doctors have run – they have all come to the same conclusion – nothing really helps.  The pain tends to consume you, and most of the time, you cannot control it. Therefore, the pain makes life depressing because it tends to control me.  So as you can see, there is not a whole lot I can do about feeling powerless because the pain is so bad, it is hard not to let it control me.

Once I feel powerless, I start to get discouraged.  Over the past eight years, I have seen a pediatrician, two neurologists, a neurosurgeon, several physical therapists, a chiropractor, a pain management specialist, and a few emergency room doctors.  You would think after seeing all those people, someone would be able to come up with something that would work.  However, no one really has.  They have been able to fix small individual pieces of the overall challenge, but not the overall migraine.  I have had migraines since I was in the fourth grade, and I am a senior in high school now.  I get very discouraged.  Especially when the pain is so bad that it stops me from living my life.

Because I feel powerless and discouraged, my self-esteem is not the best.  My self-esteem is low because I get depressed, am treated differently, and people assume things that are not true about me.  I get so depressed because the pain is unbearable and it can last for days, even a week, at a time.  When I get a migraine, the pain is so bad I cannot focus or function.  This causes me to get depressed and when this happens, I tend to give into the pain and let it control me.  I do not purposefully give into the pain but most of the time it is unavoidable.  I get special treatment when it comes to suffering with migraines.  An example would be at school.  I miss so much school, my teachers and the administration know what is going on.  Also at school, I have a special hall pass so I can go to the nurse anytime I need to.  These things are convenient but sometimes I just wish I could be a normal high school senior.
 
I have never been normal or been able to fit in with most of my peers because of my migraines.  People assume way too much these days, and these assumptions hurt.  I am nothing like what they think I am.  Some of my peers assume that because I miss a lot of school, that I do drugs, or I just skip.  Some assume people with migraines can control the pain level and how they act or function while having a migraine.  Let me tell you from experience, that is definitely not the case.  I personally feel I have just started the long process of learning how to not let pain control my life.  There are times where I do not have any hope at all, but then I get everything back together and I feel like there is some hope after all.

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Michael’s Story

My name is Michael. And I’ve got a story for you. I know nearly every migraine sufferer out there who has ever had to go to the ER will sympathize and agree.
  
I’ve been dealing with migraines since the age of 13. That makes 17 years of suffering. Though I’ve come a long way in understanding the condition, I believe I will have to deal with this illness for the rest of my life. I have a neurologist. We’ve been working very hard to find a preventative med that will keep me out of the ER. That being said, I have tried nearly every medication that can be prescribed for migraines, with little or no success. I typically get a very severe attack about twice a month. Most of my attacks respond to my medication – if I take it at the right time. The severe ones drive me to the ER. I usually have to call rescue because I cannot drive.

My problem is the response I get in the ER. Some people understand the pain and will order my meds ASAP. But I have found that most doctors are completely insensitive to my condition. They denounce the pain and tell me the best thing is to lie down in a dark room, take OTC meds, and try to sleep. Well that’s great. ANYONE who suffers from migraines knows this is IMPOSSIBLE to do. A lot of doctors have told me they see I’ve been to the ER many times, and because of that, will not treat me. They make me feel like a drug addict and guilty that I’m going through such pain. If I had ANY control over my attacks, don’t you think I would have taken that route? Especially since I don’t have insurance.

So I’m left with a doctor who treats me like a common drug addict. This is very embarrassing. It’s also very painful. I specifically let the doctor know, as if he couldn’t see from my chart, that one mixture is the ONLY thing that works for me. After 17 years, I should know!! But still, I get a doctor who asks me what works, and when I tell him, he just gives me something else. Now what is the point of asking me, if you’ve already made up your mind what you’re going to give me? It’s very frustrating.

I get very aggravated and feel like I’ve committed some crime, when I’M the one in horrendous pain. I just don’t get it. I hate being treated so poorly because I suffer these horrible, paralyzing, painful attacks. My trust and faith in doctors to really care about their patients has totally been skewed. That being said, every once in a while, I get a doctor who suffers from migraines. He assesses me, orders my meds, and within 5 minutes I’m feeling better. THAT’S what every doctor should be like. But sadly, we migraine sufferers have to endure public and societal ridicule because our pain is internal and not easily diagnosed.

To the migraine society – please hang in there and force your doctors to understand and listen. Especially ER doctors. We have to educate these people. The world needs to understand and learn this is not right. It’s unethical. It’s downright inhumane. I seriously hope through the research of MRF and others, that medical professionals will stop being so selfish, and please try to understand we did NOT chose to endure this horrible condition.  Have faith. At some point, the medical world will truly understand…right?

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Darlene’s Story

I am happy that I am now in a position to support migraine research.  I would like to tell you about my migraines so that you can pass my solution on to others it might help.

I started having migraines in my 20s and am now in my 60s.  As I approached menopause, they evolved from acute to chronic migraines.  With menopause, they started to dominate my life with greater frequency.  I eventually became a virtual prisoner in my home, afraid to work outside the home or make plans for anything because I was getting so many every week.

I tried everything!  Anything I read about.  Eventually I started doing research on my own, which also dominated my life.  No conventional doctor was ever any help to me, but I did get the most support from my gynecologist, who also suffered from migraine.  In a last desperation measure, I checked myself into a sleep study because the great majority of my headaches began when I slept.  I was determined to find out why.  The pulmonologists at the Sleep Center looked at me like I was crazy.  They did discover that I had the mildest form of sleep apnea and recommended a CPAP.  I had great difficulty adjusting to it, but eventually I was getting restorative sleep.  I believe this was the first contributor to my healing.

The second contributor is thanks to my husband’s research.  He had thought for a long time that coffee (caffeine) might be a culprit, but I never wanted to believe it since coffee, through the years, often stopped a headache.  However, since I was desperate, I first went cold turkey for a week, and then resumed modest amounts.  Within a short time I was seeing some relief.  Within a few months, I was nearing clear-headed living, with the exception of unusual non-migraine headaches that at least allowed me to concentrate and work.  A few months more and I began clear-headed living.  It was glorious!

I had been migraine-free, with few other headaches, for about three years, but late last year I started increasing my coffee drinking while working on a major writing project with deadlines.  Because of that, I believe, I had my first migraine in years this past March.  I ignored the warning, however.  A few weeks ago I had a couple more, along with several of the unusual headaches for a couple weeks.  This time I took the warning seriously and cut way back on caffeine, eliminating it completely a few days.  Almost immediately I started getting better.  I’m still limiting my caffeine to date and have high hopes I will be living a clear-headed life again in a short time.  My husband’s research pointed to my threshold for caffeine being low, whereas other people have a higher threshold.

No preventive drugs ever worked for me, and I tried many. My salvation came from, I believe, a combination of restorative sleep and dramatically reducing caffeine.  If I use an analgesic with caffeine, I drink no coffee that day.  If not, I limit myself to about 5 ounces of regular coffee mixed with decaf to not feel deprived.  I have so far found that just the 5 ounces is enough to make me alert.  Eventually I may allow myself to drink more occasionally, but I will never again forget what an enemy caffeine can be for me.

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Sandra’s Story

I have suffered from migraines for more than 20 years. I have found that different things such as the shades of the sky or sound or the weather and even smell can set it off. We had a strong rain storm 2 days ago with 79 mph winds where the temp dropped from upper 90s to low 60s and then up again to upper 90s. I suffered a strong migraine stronger than I have had in over a year. I have not had health insurance in more than a year and have used my medication as needed rather than as prescribed. I don’t like taking medicine and if I did I’d be asleep all day. When I had insurance I was prescribed a high dose of topomax, zaniflex and imitrex. There were times when the migraine was so severe that the medication did not work and I had to be hospitalized. The doctor told me to grin and bear it and not get the demerol and go into his office for an IV of depecote.

My migraines left me drained of energy and in most cases I lost my memory for the day not remembering anything of that day and having slurred speech for days along with pain in the back of my neck like I’d been hit with a bat. The pain of the headache is tremendous and the nausea and vomiting intensifies the pain. It has been a day after the headache and I’m left lightheaded and having to check my spelling on this because my words are spelled backwards. I’m running out of medicine and hope someone finds a cure soon to end this horrible pain.

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Denise’s Story

I was inspired to write this poem, I Will Not Be In Today because my migraines in fact have affected my "work life" so much.  I find myself saying the line "I will not be in today" more than I would like. I have been blessed that I have had understanding bosses.  Its hard because people still think its just a headache and its really so much more.

I Will Not Be In Today

"I will not be in today,
Yes I know its only 530am"

"I have been up sick to my stomach all night
Yes a migraine is what I have again."

"I will try to come in later
If it eases up somehow"

"But I’m going to take my pills
And go back to bed right now."

"Thank you for understanding
I apologize for not coming in"

"I will make up all my work tomorrow
I just hope this migraine ends"
~~~~~
Yes I know that I look fine
And I don’t look like I am hurt

But believe me the pain is real
Or I wouldn’t be missing all this work.

It’s the same story different day
My life, yet again, is put on pause

I know the meds will kick in soon
I just wish I knew the cause

I almost don’t exist anymore
I’m a prisoner to myself

I wish that I could find relief
I wish there was something that helped

While the rest of the world is rising
I am just beginning my fight.

No I will not be in today,
As I close the blinds and shut out the light.

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Joanne’s Story

I am 51 years old and have suffered from migraines for approximately 25 years. For some of these years, I suffered chronic daily migraines. For the majority of these years I was not able to identify the triggers. They would occur anytime, anywhere. Thankfully, after attending a Health & Wellness seminar 3 years ago, I was able to identify the triggers for my migraines and now have control of them without preventative medications. It changed my life. The seminar suggested that to help identify my triggers, I would be required to radically change my diet and be aware of the environment.

The first step was to detoxify my body by eating only fresh foods. I had to cut out processed foods (dairy products, cereals and processed meats), processed beverages (pop, juices, bottled water), frozen foods, and dried foods. I could only eat fresh fruits, fresh vegetables, fresh meats, and nuts. I was also supposed to document when I got migraines and the weather conditions at the time.

During this detoxification period I immediately found that the occurrences of my migraines were greatly reduced.

After detoxing, I was able to reintroduce all other foods, one at a time, to determine how I reacted. Through this process I was able to identify my triggers. For me, the triggers were food preservatives and weather changes. I control the food triggered migraines by avoidance, and the weather related triggers by being aware of changing weather conditions.

I had suspected food preservatives in the past but had no idea of the extent of my sensitivities until I completed this process. If I accidentally consume any of these preservatives, I will experience a migraine within 15 minutes. The list of processed and packaged foods that I must avoid is extensive.
I now read every label on every product. I am conscious of what I order in restaurant’s because of the preservatives that the foods may contain and have taught myself how to cook all my foods from scratch.

My weather triggered migraines occur when there is a change in temperature, humidity and air pressure. For these migraines my only recourse is to be proactive. I monitor Canada’s weather network website and start over the counter migraine medication prior to the weather change. I also use a space heater in the room that I am in to keep the temperature, air pressure and humidity constant.

I realize that not everyone’s triggers will be the same as mine, but I hope that by sharing my story, I can enlighten others to determine their triggers.

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Renee’s Story

I’ve had a horrible migraine for five days straight, and I’m thinking about how it’s affected my life the past few days.  I haven’t gotten off the couch or seen the light of day!  I’m living in the dark.  I’m wondering how I can endure this pain and suffering a minute longer … but then I think of how living with chronic migraine in general has affected me.

And I sink into what I call my “Migraine Depression.”  I think of all the drugs I have taken to prevent these migraines from happening, and I worry about how they have affected my body. I start to isolate. I don’t want to talk to anyone because no one ever understands.  But then I think of others who suffer from migraine and how it must be affecting them and wonder if they too have no one to go to who feels their pain. That is why I started a Migraine Sufferers Support Group – a safe place where migraine sufferers can vent their frustrations and get the support and understanding they need.
  
Chronic migraine has forced me to quit working, which has been harder to deal with than the disease itself.  Migraine has affected my social life, my relationships with family and friends, and my marriage.  Having to cancel plans frequently or always having to say, “It all depends on if I have a migraine,” can impact any relationship.  Do I buy the tickets to the show I really, really want to see?  Or will I be wasting money I don’t have because I could get a migraine?  Do I book the trip I have always wanted to take even though I KNOW I will have a migraine at least a few of those days and potentially ruin my family’s vacation?  Who wants be around a sick person all the time or listen to someone complain about their head hurting constantly?  Do you have to tell your mate or kids to JUST BE QUITE all the time?   Does the kid who plays basketball all afternoon during the summer make you go insane!? These are all things that affect the lives of migraine sufferers. 

Not being able to work or provide for myself or my family, not being able to pursue my intended goals and career, and trying to come to terms with that, is what made me think of starting a migraine support group.  Being part of the group has uplifted me more than I thought possible.  It has helped me get through the emotional stuff that goes along with this debilitating illness.  Being able to share migraine stories and console members is so fulfilling. We even laugh during meetings!  It becomes the highlight of our week.  My group members always tell me how grateful they are to have a safe place to talk migraine.  They always leave group meetings in a better place mentally and emotionally than when they came. 

The truth is no one can understand migraine unless they themselves have suffered.  Mostly just talking to someone who can relate to you and your illness makes dealing with that illness more bearable and can take you out of your isolation.  Having a place to vent your frustrations and get encouragement and guidance can make all the difference in your life.  Find a group to join. If there isn’t one to join, start it!

At MRF‘s request, Renee has put her know-how on paper. She has written a pamphlet for others who want to start migraine support groups in their communities. To dowload the pamphlet "How to Start a Support Group" click here.

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Nicole’s Story

My name is Nicole, and I am from Michigan.  I am 26 years old and have had migraines since I was in my early teens.  It seems that migraines run in my family.  I remember when I was young, my mom would get migraines once in a while.  When she did she was like a hibernating bear!  She would close herself in her bedroom with all the lights off and the blinds drawn, and sometimes we could hear her in there crying.  If my sisters and I would talk, even in low voices, outside her bedroom door she would yell "Shut up!"  I know that my mom’s sister has had to go to the emergency room for her migraines too.  When they were young they were forced to deal with their headaches using only home remedies and over-the-counter medications.
 
I have two younger sisters and one of them has inherited the migraine curse. The other one got lucky somehow and gets to live without the terrible pain.  I can’t remember my headaches as an early teenager, but from late teens until now I tend to get several migraines a month.  The number fluctuates quite a bit.  Sometimes I will go months without one, and other times I will have a couple of migraines a week.  I have been lucky though. I have always had access to prescription migraine medications. The thing is, it seems that the medications are becoming less and less effective as time goes by.  One pill used to make my headaches go away, but now it sometimes takes two or three before the migraine is completely gone.
 
I don’t get the aura that many people talk about.  I just get massive pain in my right eye and temple area and often down the right side of the back of my neck.  I’ve always thought it was weird that the migraines are always on the right side, never the left.  When I have a migraine any light is torture, smells of any kind will make me sick, and sounds make my head throb.

I just hope that one day doctors will actually stop and listen.  I also hope that we can find more information about the causes and cures so that we migraine sufferers do not have to live with this pain anymore.

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Migraine Chick’s Story

I’ve had migraines for the last ten years, and for the last three years, I’ve been having chronic daily migraine. I was feeling fairly frustrated with the pain and I was looking for a creative outlet to express what I was going through when I came across making collages. Having no art training, I found it was something I could do. Also, I learned that making collages was helpful in distracting my migraine pain. 

Below are two of Migraine Chick’s collages. See more of her artwork at her website.

My Head-My Migraines-Me

I want to show how my migraines make me feel crowded out in my own brain.

 

Migraine Silhouettes

I want show the different variations of having a migraine or a headache by using silhouettes.

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Rhonda’s Story

The first migraine I ever had was at age 40 in June 2005. I was driving home and started experiencing something like light flashing in my peripheral vision. It got worse to the point I couldn’t really see. Half my face and my fingers started going numb. Of course, I thought I was having a stroke. As I got home, the pain started in my head. I called my sister, who is a paramedic and lived across the street from me. She checked all the signs of a stroke and sent me to the hospital. They ran tests, including a brain scan, and found nothing. The diagnosis was migraine! What, I went to the hospital for a migraine? They gave me pain killers and sent me home. I was embarrassed, but I had never had a migraine and did not realize how painful they really are. My first migraine lasted four days. I missed two days of work and a volunteer function that I participate in annually.
 
Recently (June 2009), I had my second migraine. The first one was so traumatic for me that I remember distinctly how it started – with an aura. So, when I had it again, I knew I was about to have another migraine. I took OTC pain medication and went to bed. I slept for 4 hours and woke up with throbbing in my right temple behind my eye. Later, I took some more medication. The next day, it was not so bad.
 
For those of you who suffer regularly, I understand now. Before, I just thought, oh, you just have a headache. But this is not just a headache!

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Christine’s Story

I have been suffering from migraine headaches since I was 9 years old.  As I have gotten older, they have proceeded to get worse and worse.  I get them from lack of sleep and from eating the smallest amount of refined sugar.  I take Ibuprofen every single day to prevent them, since I attend college and do not have the time to deal with a migraine.

I am on a journey to become a physician and hopefully be a part of this research team.  I will be donating money to the MRF.  Thank you for trying to cure this horrible syndrome!!!

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Patrice’s Story

I’ve had migraines since I was 11 years old. I am 46 today, and up until a few years ago, didn’t have a real treatment.  I’ve lived my life almost failing school, losing jobs, with people not believing me.  Doctors had no idea what to do with me – you name it, I took it. 

I label my migraines from 1-10, with 10 being a 911 call.  My face goes numb, I  slur my worlds, and almost get to the point of fainting.  As far as triggers go, doctors think they know triggers, but they really don’t. Because, of course, they’re different for everyone. With me, it’s everything … crying, sunlight, heat, motion sickness, heated cars, heated houses, chocolate, sometimes wine, and sometimes, cigarette smoke. I guess life in general triggers my migraines. 

Migraines truly have taken over my life. I cannot travel to visit my father, who lives 795 miles away, because I am petrified to drive long distances for fear of getting a migraine. My migraines are partly hormonal.  They had to put me on a medication to stop my periods because of the horror of the migraine that would come once a month.

This is a real disease. I had to go on disability, which took two years to get, because no one believed that I really couldn’t work.  Please help us. This is a horrible disease. It’s not just a headache. I say to doctors, please take people like me seriously. We need help. Migraines are REAL, and they HURT!

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Kimberly’s Story

My migraine story actually begins many moons ago in the green grasses of the Emerald Isle. I’m told my grandfather, my mother’s father with 100% pure Irish blood, suffered migraines, and most likely utilized alcohol to quell the pain. My Mother suffered from these awful brain-busters…when I was little, I remember Mom having such a bad one that our neighbors called an ambulance -my Mom couldn’t talk to anybody and they thought she was having a stroke! 
 
Mom’s older brother, Uncle Jack, suffered as well, and once had a migraine so severe that it led to a minor stroke.  Uncle Jack’s three children suffer from "the curse" also, but not as severe as their sister. In the days prior to prescription meds, she would have to be carted off to the local Hospital ER for IV migraine treatment two or three times a week.  Now, her beautiful daughter has inherited the migraine curse – she once had a severe reaction while taking her migraine medication along with meds for acne, which caused a seizure. Frightening. 
 
I received my inheritance when I was eleven years old. It started with an aura, a grey, jagged image blocking the vision in my right eye.  It was the weirdest thing.  I told my Mom that I have "a dark cloud" in my eye – she knew.  Then the pain came.  I was in my bed, holding my head with a pillow, crying…screaming…and, being Catholic, begged Jesus, The Holy Mother, The Saints, The Pope…anybody with any type of divine influence powerful enough to TAKE THE PAIN AWAY!
 
My second migraine came to me courtesy of a tetanus/diphtheria shot. Throughout my teens, I’d get "hit" once every two months.  I’d have to be sent home from school, stay home from school.  Mom and I worked at a friend’s motel in Wildwood during the summer.  You guessed it!  I got "hit" there while on the job, and don’t you all agree nothing is worse than being exposed to the sun, getting roasted like a Planter’s Peanut, while nuclear explosions are going off in your head?  Feh. 
 
The weird thing is during my 20’s, the migraines dropped down to one or two a YEAR!  But in my mid 30’s, the migraines increased. Drastically!  Each year, I’d get more and more to the point that I’m at four a week.  That’s when I had enough.  I put my foot down, got my butt in gear and found a good neurologist.  His treatment plan saved me from going out of my mind due to the daily pain in my head.  And Doc agreed when I told him about my cousin’s discovery:  her doc told her that migraines run through the lineage of IRISH FAMILIES.  Aye, and I’ve got Irish genes on BOTH sides of me family…what’s a wee lass to do?
 
Unfortunately, during this past year, the final year of my 30’s – "the curse" made a wicked
comeback.   It started ramping up early Summer, by Fall I was up to five migraines a week. After experimenting with different drugs, Doc has me back on track and… beginning the first year of my 40’s, I can now sit back and laugh at "the curse."

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Kelly’s Story

My first migraine came one morning during my senior year of high school. It lasted a whole weekend, and after that I had a headache everyday for five long years. I’m now 24, and my pain is a lot better due to research, medication, and my decision to change my lifestyle. My migraines are hormonal, so I take hormonal birth control. I also take CoQ10, which is good for your heart and keeps your blood flowing. This may ease some pain of migraine. I want all women to know that migraines don’t just affect your head – they affect your entire body. I changed my lifestyle. I got a new job, new friends. I am eating healthier food and drinking green tea.

I encourage everybody to take control and not to give up hope. Let’s increase awareness of migraines and do everything to try to find a cure. Nobody should have to live with this pain.

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Allan’s Story

Anyone who has ever suffered from migraines knows its effects on daily life. In my case, a migraine attack lasts about two to three days, including recovery time. Luckily, I only experience migraines about once or twice a year, though they usually come in clusters.

During the past week, I had two in a row on succeeding days followed two days later with a third. This translates to nearly a week of continuous pain, bewilderment and anger.  The anger I feel comes from the sense that time has been arbitrarily stolen from my life since I cannot function in any useful way. It also comes from a lack of knowledge as to why it has occurred, what triggered a particular attack. The bewilderment comes from the attack itself, which robs me of clarity of thought.

I have a cruel forewarning that a migraine is on the way by means of distorted vision or an aura. I use the words “cruel forewarning” because included with the highly recognizable growing symptoms that foretell an oncoming migraine is the full knowledge that I will soon experience significant pain. I have also begun to notice a correlating sleep disruption that seems to precede an oncoming attack. I can’t be sure though if the sleep disruption is part of the trigger mechanism or an early warning symptom.

This is how a migraine begins in my world – It begins with a slight grayish speckling in my field of vision. Normally, it’s located slightly down and to the left, but grows toward the center and causes a nearly uncontrollable blinking response. This speckling effect gradually becomes intense enough to create a sense of double vision. The true “aura” then starts its slow growth across my range of vision. It begins as a slight flashing of color far down and to the left in my peripheral vision. The aura takes on the shape of a pulsating wriggling snake which flickers and sparkles with colors similar to a churning kaleidoscope. It moves as a sidewinder snake would move – up and to the right, toward the center of my field of vision.

The snake gradually grows in width and frequency after a few minutes have passed until my vision is so distorted that recognizing distinct shapes becomes nearly impossible. At its worst, the distortion alters my entire vision. My full scale of color perception changes into colors previously and normally unseen. In some cases, most common colors are replaced with lighter or darker shades of their true selves, as is the contrast between them. During severe attacks, colors seem to shift toward the negative as seen in photographic film.

This is also about the time my mind begins an inevitable shift into an altered sense of perception. Sounds, tastes, and smells become different. Simple analysis of common events and sights become alien and harder to grasp. I have a migraine.

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Candice’s Story

My name is Candice and I live in Dubuque, Iowa. I’ve been getting migraines for as long as I can remember, although I was not diagnosed until I was eleven. I wasn’t diagnosed with migraines though. I was diagnosed with cluster headaches and told that I wasn’t eating right. It wasn’t until a year or two later that I experienced my first migraine with aura and nausea. Doctors then diagnosed me (and my older brother!) with migraines, but offered no help with how to live with them. I was just told to take OTC medication.

When I get a migraine, the pain is often the very last thing to hit. I mostly suffer from aura and dizziness. I also find it very hard to complete my thoughts when I have an attack. Many times I lie flat on my back and the room around me is spinning like I’m on a merry-go-round. Often, the dizziness results in nausea and then an extreme throbbing pain that lasts for days.  I sometimes miss school and work because of my migraines, but I generally try to push through on even the worst days by continuing my normal activity. This usually results in my feeling very sick and being down for a few days, but I don’t know how else to live with my migraines. I cannot let them stop my life. 

In the last five years however, I have experienced what I think may be hemiplegic migraines. They begin with aura or vertigo (sometimes both), and as the migraine progresses, I lose the feeling of my right limbs and right side of my face and tongue. I also experience paralysis in my fingers and wrist on my right hand. The migraine pain is always on the left side of my head behind my eyes and above my temple. Twice in the last eight months I’ve had migraines with paralysis and loss of sensation. Both times doctors blew me off and told me to go home to bed. They accused me of taking diet pills or caffeine-loaded drugs or of starving myself.

When I am seen by a doctor, I am not taken seriously. I’m a victim of ignorance about migraines. I need to educate myself since they won’t so I can better live with the attacks. I deal with migraines regularly, and I need to understand what is happening so I can possibly prevent some of the attacks. I have started researching migraines, and a lot of the information I’ve found says the same thing…..there is no cure and no one really knows why people get migraines. I’m just tired of being pushed off as some doctor’s headache (no pun intended)! I love life and want to live it, but I can’t get out of bed when I have a migraine. I need to learn to cope with what I have, so I can live to the fullest.

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Nancy’s Story

I began having headaches in high school. I remember vividly those that began in the spring, just as the weather began to change, and school was almost over for the year. I endured the afternoon, longing for the time when I would get home and could place my head on the pillow. My sister played the piano which was against a shared wall with my bedroom. My pleas for the noise to stop were not taken seriously, and my parents failed to intervene. Even though I missed dinner with the family and stayed in my room trying to sleep it off, no one realized the agony I was suffering. No one took me to the doctor, as no one went to the doctor for a headache! My pessimistic grandmother murmured that I was going to die young. To her credit, she was the only one who seemed to know the gravity of my suffering.

I married at 19 and began taking birth control pills. The headaches increased to at least three times a week. The headaches would start at work in the afternoon, and by the time I arrived at home, sometimes driving in the heat with no air conditioning in bumper-to-bumper traffic, I had a full-blown headache with vomiting. I did not have any medication to take. The only thing that helped was to go to sleep. Somehow, while asleep, the pain left, and my brain could rest.

Finally, an OB/GYN told me that birth control pills worsen migraines. He referred me to a neurologist. Fearing a brain tumor or worse, I was concerned about numbness on one side of my face which preceded a headache. He told me that I was having a migraine. He tried to encourage me by telling me that highly intelligent people have migraines, and that we are perfectionists. There were no medications at that time (1967) for migraine relief.

Cigarette smoke sent me straight to bed with the worst of the headaches. At that time, everyone seemed to smoke. I was required to go to after-hour office functions. There was lots of drinking and smoking, neither of which I did. It seemed those who partook of the drinks and cigarettes were fine, but I would miss the next day of work with a super migraine.

I had never seen a list of foods to avoid, but over time, I found that onions, cheese, peanut butter, and doughnuts gave me a headache. I had my own little remedies: Vick’s Salve, Cheetos, Ginger Ale and an ice bag. Later, I found that other sufferers had their own lists of discovered remedies: tea with lemon, heating pad, nasal spray, etc. But when the vomiting started, nothing helped. I have stopped on the side of the road and vomited in the gutter, had to stop at a friend’s house because I could drive no further, thrown up in the trash can at my desk, and thrown up in a bag in my car on the way to church. I have visited with family holding an ice bag on my head and worn sunglasses at my desk.

My children have had to stay in the house and take care of me. While in elementary school, each of my children already knew what to do for Mama: prepare an ice bag, keep the blinds drawn, answer the phone, watch TV quietly in another room, tell friends they cannot come over, and make their own lunch.

So, for years, I lost days of my life, missed family get-togethers, parts of vacations, and days from work. Co-workers did not understand. Many would make a point, and still do, of telling me they have a headache, so as to say "see, I am at work, suffering with my headache." For a Christmas present, I once received a "pill box" for my headache medication. This was supposed to be funny. I lost one job after 5 months because I was out with a headache, vomiting, etc. The boss called my house to check up on me. My son answered the phone, not knowing who was calling, but told him that I was sleeping. I had finally stopped vomiting, and my son was not about to wake me up. The next day, my boss accused me, and thus my son, of lying. He said he called my house, and my son told him I was sleeping, but that I really must not have been home. So he fired me.

My current job of 20 years is very demanding, but my boss has migraines and has been sympathetic for the most part. One of his friends is now my neurologist, who specializes in migraines and suffers himself. He has helped me more than anyone.

I am 61 years old and still have migraines. Completing menopause has helped me, as well as learning what not to do, or what to do, and how to take medications properly. I still have memories of migraines, and how much of my life I missed while suffering.

Now, my granddaughter, age 8, has frequent headaches. I have given her parents all of the information I have concerning children’s headaches. God forbid that she has migraines, but if she does, I want her to get proper treatment and avoid the misery that her Mimi has suffered.

The best part of a migraine is when it leaves you. The next day I might feel a little washed out, but I survived.

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Michael’s Story

I was 12. Maybe I got them sooner, but I cannot say. Just recently, a colleague told me that experiencing car sickness as a child could also be a version of migraine. I can raise my hand and tell you that I suffered from motion sickness until at least the age of 15.

The worst migraine in my life occurred when I was 12. My sister and I were vacationing at my Uncle’s place. I felt a pull over my left eye. When I say a "pull", it was as if someone had placed two very strong fingers in my left eye socket, and stood on my shoulders, hunched over my head, pulling with all of his might to cause a fissure in my skull. It was not simply just a pull, but my sense of balance escaped me, almost as if vertigo was also setting in. My appetite increased ten-fold but I did not have the strength to feed myself, as the energy from my body was sapped from just tolerating the eye pull. I went into my cousin’s room and just lied down, and there I stayed for the next 36 hours.

The pain was strong enough to disorient me and keep me off my feet, but also so strong that it prevented me from passing out. The pain seemed to ebb and flow like ocean waves, tolerable and then unmanageable, all the while I was unable to move, like a parapalegic. At the climax, everything hurt — blinking, breathing, the sound of my breath, the movement of my skin while inhaling or exhaling, the movement of my eyes even to the slightest degree. It was utter torture. It was slow and methodical. There was no time to fathom why, as in "Why is this happening to me?"

I think I only survived by voluntary hallucinations. Imagine if you can, lying on a carpeted floor, with the side of your head that has the pain on the floor. My eyes became all that I had. I entered the PAIN ZONE. I became fixated on counting air particles. I became so worried about the amount that were right in front of me. This worry added to my existing pain level.

I was not diagnosed until I was in my 20s, and even then I had no idea how to combat this sort of pestilence/infection/parasite. I can recall taking a belt and wrapping it around my head with the belt buckle over the left eyelid trying to squeeze the pain out faster. I have also tried a variety of scarves.

I have never found a pattern to my migraines. Just a hint with sharp light or noise. The migraine symptoms evolved as I grew older, worsening with anything that I did in excess or not enough of, such as sleep. I most likely inherited this condition from my father, who would hibernate under a thick blanket in a pitch black room. My father would scream as if he was being chopped into pieces.

My life changed forever when I visited my Uncle in the hospital. My cousin mentioned the far-reaching hold that migraines had on our entire family. She shared with me the medication she used. It helped me too. I finally found a way to release myself from the pull.

I really felt the need to write my story in the hope that perhaps people would understand the effects of this mugger from within, this pain that comes in no shape and does not manifest itself on the outside. But no one knows where the pain comes from because they are looking for a wound or abrasion. I fear everyday that I have a tumor or an aneurysm, and that my head is going to pop like a champagne bottle at some point leaving a pool of my brain fluid on the floor. For anyone who is a citizen of the migraine nation, this is our burden to carry.

For those still suffering in silence, please do whatever you can to get help. Education will help others to be more patient, sympathetic, and understanding. If someone you know is suffering, please understand and help them. If you were the sufferer, wouldn’t you want someone to help you?

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Debbie’s Story

My name is Debbie and although my first migraines began at 25, I remember suffering from debilitating headaches beginning at age 10. At that time, my mother, a migraineur, told me not to sit so close to the TV, and thought I needed glasses.

Jump forward to 1977: I have a throbbing, right-sided headache, nausea. I am in bed under the covers, just praying the pain would go away. My doctor diagnosed me with sinus headaches. I found that medications with caffeine, a decongestant, and aspirin helped for a while. This went on for years. In 1983 my family doctor finally diagnosed me with migraine. We treated them with ergots and tried propranolol to prevent the attacks, with less than optimal success. Imitrex was a life-saver when it came on the market.

My story gets complicated in 2001 when my migraines became chronic. I have a migraine nearly every day. I have seen 5 neurologists, been hospitalized at a leading headache center, had more MRIs than I can count. I have had trigeminal nerve and trigger point injections and 3 rounds of Botox without success.

I am a "frequent flyer" at the local Emergency room. Every time I go, I wonder if the doctor on call will believe me and give me enough medicine to end the pain. Some doctors seem to think I am only seeking drugs. I am questioned, poked, prodded, had bright lights shone in my eyes, and given medicine that doesn’t work. My friends give me well-intentioned advice from giving up chicken to trying magnets. Some get miffed if I don’t take their advice, but I can’t chase every so-called cure there is.

In spite of the negatives that having migraine disease brings, there are many bright spots. Right now I have a neurologist who is determined to get my migraines under control. My loving husband is very supportive and will take me to the ER when I need to. He is often a better judge of my pain than I am.

Right now I am convinced that my migraines are here to stay. On the surface, I seem to be less affected than I really am. I decided that unless I am beyond functioning, I will maintain my social life, attend church functions, and exercise. Unfortunately, this backfires when I am really sick. There is one thing I would like: I want to have people know that there is a person behind the pain. Instead of asking, "How’s the head? or How’s the headaches", I would like someone to ask, "How are you? How are you coping right now?" Then I would know that they care.

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Candi’s Story

I started to have really bad headaches along with inner vertigo when I was working in retail and going to school several years ago. The headaches became so ferocious that I finally sought medical help. The doctor just told me that I was under a lot of stress and that I probably had an inner ear problem. The vertigo eventually left but the headaches, which are actually migraines, have continued and go in cycles where I have them daily for a while and then they go away for a while. Unfortunately, I have no support system nor any medical insurance so OTC migraine medication is my only option. Although the migraines are very painful, I don’t get any of the other symptoms that others seem to get along with their migraines — aura, nausea. Although, I do get some light sensitivity. OTC’s do work eventually if I take them right away. I would like to see a doctor and get a prescription but in my experiences with the medical world, they don’t really care about women that much anyway, so what good would it do. I’m looking at wheat, caffeine, chocolate, estrogen and emotional stress as being possible triggers. Who knows though? My thoughts go out to all of you who suffer as well.

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Jerri’s Story

I read the other stories and realized that there are people out there who understand what I go through every day. My pain didn’t really start until I was about 18. Right after that, I lost my sister. Of course everyone believed that was the real "trigger" of my pain. Though the grief was very painful, it was not why my head always hurt.

Today I am 39 years old. I have been poked, prodded, tested, and tortured by the "best migraine doctor in the country." I have had many MRIs and CAT scans. Each time, I really wanted them to find something .. ANYTHING to prove that I wasn’t making this up. Maybe there would be something they could "fix." I’ve been told all of my life that it is impossible for me to be in pain every day. I have tried all the "normal" or "routine" meds, but my body adapts so quickly that docs have to continue to change them. Doctors give up on me because they can’t think of anything more they can do.

Now I am offically disabled. I worked for the last 11 years and was at the point of losing my job because I couldn’t work many days. I’m not even 40 and will not be able to work again (unless they find a miracle that will stop my pain). This is from someone who has worked since the age of 14.

I never make plans or promises since often I am not able to leave my dark room. Often when I go to church, I have to go to a different part because the worship music is too loud. And light is my biggest enemy. My church family is very understanding when I wear my sunglasses during the services. But people want to help. Many people come to me with home remedies. My mother has spent thousands of dollars on books, natural meds, and anything else that possibly might help. My brother has spent many hours on the internet doing research. Many people ask "How do you feel? How is your head?" I just want to put on a sign that says, "Yes, I hurt."

Although I have learned that I am not alone in suffering daily with this pain, all I can see is another 50 years with the pain getting worse. I feel helpless and frustrated as we all do. But I am able to look at this as something I can handle. If I had to watch a family member or friend go through this, it would be unbearable. I think those of us who suffer these attacks are strong and able… even in the worst of the pain. We cannot give in or give up. Maybe through us they can find a cure. Thank you to those who share your stories. I am saddened that there are so many of us… too many. But I also am strengthened by knowing that I’m not crazy, and I’m not alone. No matter how bad I hurt.

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Fran’s Story

I experienced severe headaches as a child, but my first memory of what we now know was a migraine was at the age of 20. Right after I had my first child, I started to experience the worst headaches of my life. The nausea, vomiting, pain, aura, light disturbances would just incapacitate me in every way. I had a newborn, husband, and a good job, but could not function during these times. I had seen a neurologist at a local hospital who treated my headaches as a routine type of thing. He just gave me mild pain medications and told me to change my daily habits — watch what I eat, drink, lessen tension, etc. I have done everything — biofeedback, diet changes, and taken so many different meds that I feel like there is nothing left to try.

Now at the age of 47, there is still no change in my migraines. In fact, they are much worse. It seems that they cycle from a few months of getting a migraine for days on end, to steadily decreasing for a short time. But there is never a ‘normal time’ when I can let my guard down. I have missed so much because of the migraines, that you have to wonder if it is really worth continuing to live this type of lifestyle.

I am now looking for a new neurologist who will really understand my problems. When I call in between my appointments looking for reassurance, additional information, or assistance of any type, I want a doctor who will give me the time of day, instead of an office clerk just passing me off as another problem patient.

Hopefully someday there will be medication available that doesn’t cost almost a whole week’s pay and will really work for a long period of time, instead of the ones I have tried that may work somewhat for a very short period and then just not work at all. We need physicians who really care about this severe medical problem and enable their patients to be more active in their treatment.

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Takia’s Story

I’ve been getting migraines since I was four. I’ve been in and out of ER’s, had endless amounts of CAT scans and MRI’s, and have been on every trial drug you could think of. I am twenty-four now and still don’t know the reasoning or cause behind them. I sometimes think about just killing myself when I get one b/c anything has to be better than the pain. I wish that people could understand that migraines aren’t something to be taken lightly b/c this type of pain I wouldn’t even wish on my worst enemy. I was the type of kid that couldn’t go to sleepovers or concerts or anything like that for fear of when one would strike. I have a three-yr-old son now and I pray that he doesn’t have to go through the same thing that I did. I know they’re hereditary b/c my mother, grandmother, and aunt get them as well. I am in the military and just recently returned from a deployment from Iraq, and I think that was probably the hardest thing I’ll ever have to do. It seemed as if everything was a trigger for a migraine, the sad thing about it was that nobody seemed to believe how much pain I was really in. Everyone (including some doctors) thought I was faking everything to get out of working. I’ve been reduced to never leaving the house w/out at least 2-3 different types of medication b/c I never know when one will hit. I just hope that one day a cure will be discovered b/c I am in a constant battle with these migraines and sad to say that I don’t know which is going to win out in the end, Me or them. I feel as if I don’t have control over MY own life and I’m just so tired.

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Jennifer’s Story

I was 24 when I had my first migraine. In the middle of University finals, I thought I was dying. I didn’t think a person could feel so much pain and live. For the next two years, the doctors would treat me as though I was over-reacting to a headache. I was resigned to living in the pain that my aunt and mother lived in.

I was a regular in the ER and was given a medication I was allergic to twice and sent into shock. If my then fiancé (now husband) hadn’t been there, I’m sure I would have at least come close to dying, as I was given a med, not hooked up to monitors and left behind a curtain until staff had time between "real patients" to see me. I was never treated seriously because I just had "a headache."

I was given pain killers and steroids injected into the tendon that connects the neck to the skull. The injection made me scream every time, but it would break a migraine cycle that otherwise lasted up to 45 days. I was given every type of Triptan on the market with no success. My doctor would complain of his frustration as though he were the one in pain. I was a burden to his practice.

Up to this point, the story is typical for many migraine sufferers. Then it all changed. I moved, not knowing that changes in barometric pressure can trigger migraines. I was ok from our move-in date in April until mid-September, living on an acetaminophen and ibuprofen diet. Then I began to get emergency-room migraines again. Finally I found a doctor who took it seriously. Unfortunately, it was almost too late. The migraines began to get what the doctors called "complex," bringing symptoms such as dizziness, loss of vision and hearing and palsy. Then one day I was found unconscious in my office at work. Luckily, I worked in brain injury rehabilitation, so my coworkers immediately gave me stroke-tests and sent me to the hospital. I was out of work for six months, being unable to dial a phone due to the palsy, unable to drive due to vision problems, unable to focus, walk properly, go ten minutes without crying, or to exist in a world with lights. I took up to 60 mg of morphine a day to avoid going to the hospital. I was told I had either a brain tumor, an inner ear tumor, MS, or epilepsy. I was told to prepare for a fight. Months of testing (EEG, CT Scan, MRI) resulted in being told I needed to move because the rapid barometric pressure changes were practically killing me.

I moved and was better two days later. I still have migraines, but have found medications that help. I do yoga to avoid tension headaches and regulate my diet and sleep habits. No chocolate, no alcohol and no caffeine. Lots of water. I have a homemade Gatorade recipe to keep me hydrated on hot days. I see an optometrist every six months, as my vision changes often.

It has been a year since I’ve been able to return to work. Many people don’t know that migraines change your hormones, as your pituitary gland reacts to the migraines and performs differently. I gained 40 pounds throughout the ordeal, and my doctor told me that I went through almost a second puberty. I am fighting tears still just remembering the fear and the pain.

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Elizabeth’s Story

I had my first migraine when I was 12. At the time, I thought it was a sinus problem, allergies or something. I almost passed out and had to go home from school. Between ages 12 and 25, they have been increasing in frequency from one every few years, to one a semester, to three to five per week. One year ago I met a new friend, the "acute" migraine, migraine’s nasty older brother. The only treatment is sedation.

I spend my life around loud noises. I am a classical musician. I intend to make my life playing the French horn. Let me tell you something about what it feels like to play my horn with a migraine.

One day last semester I had an acute migraine. It had lasted 36 hours by the time I got to rehearsal. I was unable to go to the doctor to be sedated because of my obligation to the orchestra. Doped up on pain pills, I spoke to the conductor before we began and said, "If you have trouble getting my attention tonight, please be patient."

Then I remember scolding him about a comment he made in rehearsal months earlier, my inhibitions being dulled by the narcotics. He had said, "The invention of aspirin was the worst thing ever to happen to classical music, you (orchestra members) don’t understand pain." I told him that I thought that was a stupid thing to say. My music has certainly not been improved by my intimate knowledge of pain. I digress.

The rehearsal was Schumann’s Symphony No. 3, "Rhenish." Sometime in the middle of the second movement, while I was playing a high passage, I felt like my right eye exploded in my skull. I remember reaching up to feel for the blood. I almost fainted, but I made it through the whole rehearsal. And, furthermore, I played well.

I have found little sympathy in my field for people with migraines. I will not get a job if I can’t play well when I have a migraine. There is no "doctor’s note" I can bring in to an audition in case one strikes mid-excerpt. But my passion is my passion. I will not let the pain keep me from my dream. Once I was about to start a rehearsal of a contemporary, very loud, work for horn, percussion and prepared tape. Our coach said to me: "Elizabeth, are you alright? You look like you’re going to throw up." I replied, "Well, I may. Don’t worry, I’m not contagious or anything, it’s a migraine. I’ll be fine."

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Halli’s Story

I was 3 when they first started. Pain so horrible I can still remember the way it felt. I still fear that pain. I am now 19 and will be starting my second year of college.

I was never actually diagnosed with migraines by a doctor; it was my mom who recognized the symptoms as she has had them since she was a teen. Growing up with migraines was hard. I couldn’t do a lot of things because there was always something there that was a trigger. I didn’t have a lot of friends because nobody understood my pain. During high school, the migraines got worse, more painful, and lasting months at a time. I found my triggers to be loud echoed sounds, bright lights, strong smells, and high stress (pretty much everything in your average high school). It got to the point where I was actually asked to leave the school because I had missed so much, and the administration didn’t know how to deal with me. I ended up enrolling in the American School of Correspondence, doing my courses by mail and having my credits transferred to my high school so I could graduate with my class.

I have had my fair share of medications and doctor visits. At one point, when I went for an MRI, I actually hoped they would find something wrong so I would know where my pain was coming from. But there was nothing, just the horrible pain.

I have not had a big attack for a few months now, but I know one could strike at any time. If I could tell a sufferer anything, it would be to not let migraines run your life. It’s a horrible way to live, believe me. If you haven’t found your miracle cure yet, keep looking. Don’t give up. Find your triggers, and do your best to avoid them, and your life will be much easier.

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Sam’s Story

I have suffered from migraines since I was three. Since I was five, I’ve been to ER’s all over the east coast, and I have been hospitalized for over 15 days twice in the past year. I am 18 now and have lived with chronic daily migraines for the past four years. Being a teenager in high school, I have lots going on — academics, sports, friends, and college looming. I have accepted the pain that’s always there and learned that distractions are necessary. It is not impossible to deal with migraines every day — it just takes a lot of courage. You have to take it a day at a time.

It is hard, and what makes it harder is people treating me differently, and always asking how I’m feeling. I hate it when my family call and their first question is "how are you feeling?" Or when people call me with another pointless "cure" they read about on the internet. Yes, I know that they do this because they love me, but that doesn’t help much.

It is depressing knowing that I will have another migraine every day, and it is anxiety provoking waiting for it to hit. People ask me, "how do you deal?" My answer is simple and always the same — I have no choice. You can’t curl up under your covers and watch the world pass you by. Although I wish I could most of the time. You only have one life, and just maybe, the next medication will work.

I recently dealt with having two bad drug interactions that looked like seizures while I was in school. Even though I was scared, I had to play them down so my school would not get upset about them. But they did. They decided they could help me by lightening my load and made me drop a subject I love. What they didn’t know is that my work is what drives and distracts me. It pushes me out into the light. They wanted to help, but ended up making it worse for me. This is just one example of what migraine sufferers have to deal with on a daily basis.

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