What is Migraine? (The Life Impact Story)

What is migraine?  Migraine is that cousin that you can’t stand.  Remember him?  We can call him Cousin Mig.

Migraine Life Impact

He shows up drunk to every funeral.  He shows up depressed and philosophical at every wedding.  Seriously, if it hadn’t been for that promise you made to your grandmother, you would have had a restraining order issued long ago.

Do you remember that time, a couple of hours before your daughter’s graduation?  He begged you to go with him – just for a few more minutes – to help him fill out some paperwork at the employment office.  But his car broke down in that tunnel, and you were too far from your daughter’s school to walk.  He offered to get the help, and you spent hours in that smelly dark tunnel waiting and imagining nasty things.

When you go out for a good time with your friends, guess who shows up?  Yes, your cousin.  He has brilliant ways of embarrassing you in front of everyone.  Before you know it, you’re fumbling for words in your anger, and end up embarrassing yourself.  He monopolizes the conversation (although later your friends assure you it wasn’t so bad), and you end up going home to bed early, another evening ruined.

And yes, he comes to your house often.  He doesn’t ask, or call first.  And he’s way to friendly with your kids – we won’t even talk about that.

You’re always bailing him out of one scrape or another.  Sometimes it’s expensive, other times just inconvenient.  You’re trying to finish a report, or spend time with the kids (while they’re still young!), or enjoy an evening with a good movie.  And there he is, at the door, with another emergency.

You really don’t want to blame Cousin Mig, but – if it hasn’t been for that one day (you remember what I’m talking about), would you have gotten that promotion?  Or would you have been "all that" in the interview, and gotten the job you really wanted?  And think of what you could have gotten done if… but why think like that?


Migraine.  It’s probably hereditary (the promise to grandma, remember?), and it often strikes in the most "productive" years of life.  (I admit it’s debatable what is most productive, but in reality migraine strikes at all ages)  That means the years when your kids are growing up, the years when you build a career, the years when you travel.  Whatever it may be, migraine is a thief that can steal the key moments of these years.  The special events, the job productivity – when you most need the time and energy, you don’t have it.

Many people think migraine impacts you only when you have the symptoms (during an "attack").  That’s one of the biggest problems.  If you have migraine disease, it impacts life all the time.

Have you ever stayed home waiting for an important phone call?  Someone asked you to dinner, or you wanted to get that shopping done, but you set it aside to wait for the call.  And, of course, the person forgot to call!

That’s migraine.  You never know when it’s going to strike, so you can never plan anything with certainty.  Will I be able to finish that job tomorrow?  Will I be able to go to the concert on Friday?  I never know, because I never know when the next migraine will strike.

This is a major feature of migraine that health professionals are really starting to understand.  Just like migraine impacts the entire body, it impacts all of life.  Just like the cousin of your worst nightmares (you don’t really have a cousin like that, do you?).

Migraine has an indirect impact on many other areas of life.  Consider this vicious circle – missing work and losing productivity because of migraine, losing needed income, and then spending more on migraine treatment.  The financial burden can grow and grow, and this is a very real issue for many migraineurs.

This is not intended to be a complaining post.  Many migraineurs I know are very positive people.  But you do need to understand, whether you have migraine or someone close to you does, that it has a huge impact on life.  It’s an impact that goes beyond the pain level, beyond the hours in bed, beyond a missing day.

Frankly, migraine is closer to you, and worse than, your Cousin Mig.

That’s what migraine is, and that’s why we’re fighting it.

This is part 3 in a three part series.  If you want to really understand migraine, read What is Migraine? (the scientific story) and What is Migraine? (the Story of Symptoms).

Here’s another brief description of the impact of migraine on society from the Value in Health journal.

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18 comments… add one
  • Jasmine Jan 29, 2009

    Great posts James – enjoyed the whole series.

  • Beth Jan 30, 2009

    I have been reading your articles for several months now as a subscriber on my Google home page. I have suffered from migraines for the last 14 years. I am 41 years old, divorced after 16 years of marriage, and have 3 beautiful children. I am unemployed, but my ex-husband supports the decision we made to be a stay at home mom to our children. However, I suffer from migraines so often; I have little if no social life outside my family and network of Facebook friends from high school and college. I have read thousands of articles on migraine and researched every possible alternative therapy. I have exhausted every possible effort on herbs, vitamins, avoiding certain food triggers, preventative medication, and have had to endure the stigma of being on narcotic medication. This particular stigma wouldn’t be so bad if my own parents, who happen to be very anti conventional medication, didn’t insist that if I am on a narcotic medication that can be addictive, that I am, in fact, addicted. I don’t even argue with them anymore because it is to no avail.
    I have never been led to comment on ANY migraine article before this particular one, which literally brought me to tears. James, you have described my life for the last 14 years as if you knew me by heart. When you started to talk about waiting for someone important to call you said, “That’s migraine. You never know when it’s going to strike, so you can never plan anything with certainty. Will I be able to finish that job tomorrow? Will I be able to go to the concert on Friday? I never know, because I never know when the next migraine will strike.” I broke down in tears and as I read it again, it has me sobbing. No one has ever been able to put my life into words the way that you did. The most frustrating thing is that no one in my life seems to understand how much that particular aspect is so difficult. I can’t get a job even if I wanted to because even though I am a dependable, hard working person, I myself, while living with migraines, am completely undependable. I can’t sign up to volunteer at my children’s’ schools, chaperone field trips, or even sleep over at family or friend’s homes because I know I have a more than likely chance of ending up with a migraine. Unfortunately, the people who are close to me in my life, either do not appreciate the true agony it takes for me to pack up my things, my kids, and drive over an hour, probably into the sun, or through flickering shadows, only to arrive where there is obvious excitement and energy under bright or recessed lighting, or sitting down to catch up and trying to find a seat where the contrast of the sun won’t be too hard to look at while you try to listen to the important events that have occurred in my loved one’s life, without that giving me a migraine. As much as I tell my loved ones what my triggers are, it never seems to make a difference when that exact situation arises, so I feel like a diva, as I am constantly asking for lights to be turned down, or to sit in a certain seat so the person I am looking at doesn’t have the sun behind them. I find this situation to be too stressful so I resign myself to the fact that it’s just easier to stay home, in my comfortable room, where my lighting is tolerable. Sadly, this has created a very lonely life for me. I am naturally a very outgoing and friendly person, but this “Cousin Mig” has alienated me from all of the important people in my life. It has robbed me of precious moments in the lives of my kids and has contributed to my negative outward appearance that used to be a positive thing in my life that helped me feel good about myself. It’s ruined any income potential because no “medical institution” or “government department” has recognized my “cousin” as a handicap. It has pushed me into some very dark and painful places and I hate it. I want it to go away, but I don’t have the luxury of kicking this “cousin” to the curb.

  • Jasmine Feb 2, 2009

    Hugs to you Beth. I relate so much to what you say in your comment.

  • James Feb 3, 2009

    Beth, your story almost brought me to tears. All I can say it, I understand just a little tiny bit of what you’re going through. You are not alone, and there is hope that things will get better!

    I hope you keep visiting – and that visitors here and myself can help you feel a little less lonely.

    I also hope others will read your comment – maybe friends and family of other migraineurs who need to understand what it’s like to deal with Cousin Mig…

  • Judy Feb 3, 2009

    It is so good to know there are people who understand! It’s not just the episodes of pain and misery that are crippling, it’s the time spent trying to pick up the pieces after an attack, all the preventative measures needed to be put in place in everyday life, the discouragement of having those around us, even those closest to us, be alienated by fear or insensitivity or frustration. Somehow, we can’t lose hope! Thanks for that article, James, and thank you, Beth, for sharing a glimpse of your life. I’ve got a rough patch coming (just lost my insurance), and even though I don’t wish migraine on anyone, it helps to know I’m not alone.

  • Blaine Moore Feb 4, 2009

    I’m never going to have another migraine. That’s what I say after every one of them, and I try to behave in life as though that were the case because what can you do? Worrying isn’t going to solve any problems and will only be that much more likely to bring on another attack.

    So, I live life as though I don’t have to worry about it, and if I do get a migraine then I try to do as much as I possibly can given the severity of it. Sometimes, that means finding something that I can do blind, other times it means laying out in my car with gun range ear muffs on and my jacket over my head.

    I’m just thankful that I’ve managed to mostly get them under control. I average less than 1 per month throughout the year now, which is a far cry from 10 or 12 years ago when I was blind for 2 weeks straight from migraines.

  • Miss Gisele B. Feb 5, 2009

    James,

    What a detailed article to help us understand the mystery of migraines.

    I’m lucky, I’ve only had a few in my life, but one of them prevented me from being functional for an entire day. This is problem that affects to many people.

    I think that it’s amazing that you devote yourself to helping understand this issue with your blog.

    Miss Gisele B.

  • James Feb 6, 2009

    Thanks everyone for your comments and encouragement.

    You’re right, Blaine – no point in worrying. On the other hand, you do get to the point when you need to prepare. You can lessen the impact, and hopefully lessen the number and intensity of attacks… with some planning ahead, some treatment, etc.

    But you can’t live your life in fear. Being ready is one thing; being constantly preoccupied is another. (Even as I write I think of so many who have headache all the time – but even those have control over how much headaches control them)

  • Beth Feb 6, 2009

    I appreciate everyone’s encouraging words to me. I have to admit, I still cry when I read this article. I have been able to share it with one friend who has a family member who suffers from migraines. And even though I tried to share it with others, I don’t think they “got it”. James, I especially want to thank you! Your articles are so informative to all of us who suffer in silence because people are tired of hearing about our “headaches”. I am going to keep sharing your articles as they are of the upmost value to me and anyone who is or is close to someone controlled by migraines.
    And a note to Judy, I lost my insurance years ago. My neurologist helped me get several of my medications for free through the Prescriptions for Patient Assistance. Among others, I take Maxalt and Effexor and am able to get those directly from the manufacturer for free. Good luck to you!!

  • Andy Feb 10, 2009

    James,

    Your article is a biography of all of us, in one way or another. I see myself in much of the article, and in the comments by Beth. You have to, as you said, is be prepared, and develop your own tools to cope with your illness. Each of us needs to fill our toolbox with the things we know help us get over the next migraine and take them one at a time.

  • Sheryl Feb 21, 2009

    Hello! This is my first post. James, keep up the research. It means a lot to all of us. My question is this – does anyone out there suffer from barometric pressure migraines? I can always tell when a storm is coming because the pressure drops, and my head begins to POUND! My doctor wanted to put me on Atenolol, but I really don’t want to be on anything synthetic. Any suggestions for a homeopathic remedy to help relieve the pain? I have learned over the years which foods trigger my migraines, and I don’t eat them. I have learned that bright sun , being too hot, anything too loud, or just a strong odor can start up the pain! I started taking CoQ10 about two months ago, and my frequency of headaches has decreased. I had read that people that suffer from migraines have a deficiency of this enzyme. However, nothing seems to stop these barometric pressure migraines! I would like to hear from anyone who suffers from this type of migraine. Thanks so much, Sheryl

  • Sue Feb 22, 2009

    Thanks so much for the information. I have been a migraine “groupie” for many years. I could run my own pharmacy with drugs that I have taken and currently take. I am happy if I can keep the migraines at bay. I take feverfew and propanolol which helps on a daily basis. I was at my doctors last week and he is frustrated just as much as me, well maybe not as much, but almost. He suggested that I get my oxygen level tested at night. I know that I don’t stop breathing but I was shocked to find out how shallow my breathing is at night. I had over 14 incidents where it dropped dangerously low. I am now on oxygen at night (2 liters) and I haven’t had a migraine in 6 days, which can be record for me. I have gone longer (2 months, but that is rare). Getting use to the nasel cannula has been the most trying, but I am now sleeping through the night and I don’t wake up with a migraine. I just retired from teaching special education for 29 years and I can count on one hand the times I had to stay home due to a headache. I forced myself to deal with it and to keep the drugs handy. But not to wake up with a migraine…wow…I just hope it continues. I am still being tested and evaluated, but at least I have found ONE thing that is working for me. It’s nice to have a resource of “friends” who won’t say, “it’s all in my head”.

  • James Feb 23, 2009

    Thanks for all your notes! Beth, I don’t think anyone who doesn’t have migraine will ever totally “get it”, but I hope we’ve at least been able to take a step forward.

    Andy – good advice!

    Sheryl – yes, I suffer from attacks related to barometric pressure. They are a real challenge to treat – they represent some of my worst attacks. Actually, I’m working on some new resources for barometric pressure migraine – stay tuned!

    Sue – your comment is very timely, especially considering the most recent issue of HeadWay on sleep apnea. This is a topic we’re going to continue looking at in the weeks ahead – thanks for sharing your experience!

  • Emma Feb 23, 2009

    I have to say that your e-zine has provided me with some great information that I have passed on to the uninformed – so thank you James! I have suffered with this disease from the age of 10. That was the day they thought I had a tumor and scanned the heck out of me! Imagine my family’s reaction when told that I suffer from migraines… So, 22 years later, I still suffer. No pain medicine works for very long – usually about 4 doses, and no preventative treatment keeps preventing them – the longest I have gone without a migraine is two weeks. I suffer from many types of migraine – eye, basilar, and what I call “lightning strikes” when I literally feel like I have been hit with a bolt right through my head. My only identifiable trigger is weather – I can feel the barometer changes and end up with migraines from this – making March and November horrible months for me in the NE US.
    I don’t let them stop me… I have a 12 year old son and life doesn’t stop for my migraines, so I try not to stop for them either. If I did, I wouldn’t be able to work, read, ride motorcycles, etc.,. Life is too short and already packed with things I want to do, so I try not to let migraines take charge of my life even if they sometimes interfere. Good luck to everyone out there – I hear there is a new migraine treatment coming out this spring – who knows, maybe this one will do the trick!

  • James Apr 10, 2009

    Thanks, Emma. Migraine is such a challenge – but you’re right, we CAN’T let it stop us!

  • TheDailyHerb May 25, 2009

    Wow, powerful article, James. I also feel that you’ve captured the essence of what my life has been like for many years now. I can so totally relate to what Beth is going through as I have been there too. I lived in fear of when the next attack was coming — and for me, they were almost every day (I have so many triggers). I have quite literally lost everything to migraine — career, financial security, friends, family, relationships, small businesses I owned, the list could go on.

    Here’s what has helped me. I have looked at my migraines as a blessing in disguise and asked myself, “What are the gifts that migraine has given me?”

    1. I have learned to stand up for myself and for what I need.
    2. I have learned to self-advocate with medical professionals, helping agencies, and college officials.
    3. I have learned that I am in control over my health and can take charge by putting self-care first.
    4. I have learned who my REAL friends are.
    5. I have discovered how strong I really am.
    6. I have learned to be uber resourceful.
    7. I have learned to ask for help when I need it. (yes, very humbling)
    8. I have truly learned how to balance work and life
    9. I have learned to say no and really mean it.
    10. I have made wonderful connections with migraineurs like me and draw great comfort and strength from the “migraine community.”

    Because the financial impact of migraine was so devasting to me, I went back to college. Not only did it afford me “income” from my student loans, but I got my BA in Psychology, graduating magna cum laude last year (in spite of debilitating migraines).

    I want to assure Beth and other migraineurs that if they are disabled my migraine then they can and should apply for social security disability (here in the US). I also heard the rumor that migraine wasn’t a recognized disability. Let me assure you SSI and SSDI is available for those disabled by migraines.

    I began receiving SSI benefits last September. You can file a claim at your local social security office (I did this when I was in migraine so they could see how sick I am.) Still, expect to be denied the first time you apply. Then, find an attorney or like I did, I former Social Security employee who now handles disability claims. (Word of mouth is the best way to find someone, but you can look in your local phone book.) It took about 13 months, but my appeal went through and I was granted disability benefits going back to my original filing date.

    Now this is a very good reason for taking the time and energy to keep a migraine diary! It documents how disabling your condition is. (I used my migraine diary for a Statistics class project and then used my statistical analysis as part of my disability claim documentation (also got an A+ on my report 😉

    Although this money alone cannot pay my all my bills, it helps tremendously as I begin to reclaim my life from migraine and relaunch my coaching practice. The going is slow, but I am making progress every day.

  • DJ Jun 24, 2009

    Well done. Doctors are still slow to understand the impact on productivity and life quality migraine has. How doctors think we earn a living or keep our jobs if we’re taking excessive sick leave is beyond me, yet asking for treatment is seen akin to asking for an illicit drug even when the the patient is simply seeking control so they can get on with their work, life, family and community obligations.

    Personally I have gone for years with little happening with excuses being it’s stress, nothing can be done, you’ve had treatment (only 1 medication out of 100 possiblities) so nothing further can be done and it goes on. Then of course then there’s the but you’ve had them for a very long time (because doctors wouldn’t treat).

    The more awareness of migraine and treatment options the better

  • Aurora Sep 16, 2009

    I am so glad I found this site. I thought I’ve read and exhausted everything about this disease then lo and behold—Cousin Mig! I am still in bed; it is my third day of continuous headache; a bit diffused now, but I still feel like a cripple. I am turning 43 this month and I have had these attacks since I was 25 but didn’t suspect it was migraine. I thought it was just my poor eyesight (left eye is -1 and right eye is +2). After getting the proper eyeglasses, the headaches persisted! Then I blamed the pressure of my bite so I went to the dentist and had my molars fixed. I thought maybe it was my poor eating habit that was causing my nausea and vomitting—hyperacidity, you know. Then I just ran out of targets to blame for my headaches. One of my friends even suggested: “Get a sex life!” Nothing worked. I started not wanting to go to work because I didn’t want to take any more pain relievers that didn’t relieve the pain. My family just said it was just plain laziness or I was just depressed and burned out and needed a vacation. I wasn’t the same anymore. It was like two people; one day there’s this happy-as-a-clam person, then the next next day this intolerably exasperating diva who didn’t want the limelight. I feel like a failure at everything. I didn’t even qualify for that experimental drug test here in Norway because I have more than 15 days of headaches in a month. My GP gave up on me saying I was his worst migraine patient; he’d ran out of medicines to prescribe and passed me on to a neurologist. My worst attack was last year when I was taken to the hospital by an ambulance because I was not coherent and couldn’t answer simple questions like what my name was. My blood pressure dropped to 66/33. It seemed that my system was all screwed up. But I recovered in a couple of days. I am also the type who get the most seldom of side effects from the drugs that were prescribed. I had epileptic-like attacks the first time I used Imigran injection; my face became bloated after one week of taking Indometacid. I urinate a lot and vomit a lot if I take more than 10 mg of triptan a day. So, most days I feel dehydrated and exhausted and we all know that dehydration can trigger a headache. Like Beth, I feel I’ve been robbed of my potential. I have been jobless for almost 5 years now and dependent on social help. I am trying to get out of this vicious cycle of energetic for a couple of days then down for 3 days. I even dread job interviews because they also ask about one’s health and I am always honest about it. So I just gave up trying to be productive. Most of my days are spent in this dark room with only the flickering lights of my aura for company. I am that alien who walks inside the house wearing sunglasses and earplugs. I also suspect that my migraine is coupled by other types of headaches because sometimes I can’t pin-point if it’s a migraine. I have tried physiotheraphy; naprapathy, and acupuncture. I don’t want to take medicine for epileptics, though my doctor hinted at it, but I didn’t react on that. I’ve had enough. So, another round of trial and error— tried taking magnesium supplements; have given up on so many types of food that I am on the verge of becoming a vegetarian. But still, my headaches are averaging more than 18 days a month! The entertainment I got today is Cousin Mig. Thanks for describing him and thanks for starting this community. I have to park my pen—I’ve got a headache!

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