Almost everyone either knows someone who has suffered from migraine, or has struggled with migraine themselves. 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.
– 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].
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.
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?
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 dr. 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.
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.
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.
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.
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.
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.
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.”
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 AmericanSchool 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.
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.