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Study: Chronic Migraine is Disabling and Severely Affects the Ability to Lead a Productive Life

The National Headache Foundation‘s American Migraine Prevalence & Prevention Study data have been reanalyzed to reveal just how debilitating chronic migraine is. Chronic migraineurs have migraine episodes at least 15 days a month and most have pain every day. Approximately one million people -– mostly women -– have chronic migraine.

Key findings of the study, from a NHF press release:

Chronic migraine remains a largely under-diagnosed and under-treated medical condition.

While the vast majority of individuals with chronic migraine (87.6%) had sought care from a healthcare professional, just 20.2% of those with chronic migraine received a diagnosis of chronic migraine, chronic daily headache or transformed migraine. Another nearly 14% were told that they had rebound headache or medication overuse headache.

Migraine-specific acute treatments were used by 31.6% of respondents with chronic migraine. Almost half (48%) of the individuals with chronic migraine were satisfied with their acute therapies. A third of those with chronic migraine (33.3%) were currently using preventive medications.

Although most individuals with chronic migraine sought medical care for this disorder, the majority did not receive specific acute or preventive medications.

One in five chronic migraine sufferers cannot work due to the severity of their condition.

Over a 3-month period, 8.2% of the chronic migraineurs missed at least 5 days of work and school. Further, slightly more than a third (33.8%) of these sufferers reported at least 5 days of significant reduction in productivity during the same time frame.

Chronic migraine severely impacts one’s ability to lead a productive life.

More than half of those with chronic migraine (57.4%) missed at least 5 days of household work, and 58.1% reported a reduction in productivity in household work for at least 5 days within the last three months.

Chronic migraineurs also reported missing out on at least 5 days of family activities within the three month period.

“With one in five chronic migraine sufferers not being able to work due to the severity of their condition, the human and economic costs to these patients, their families and their employers are staggering,” said Suzanne E. Simons, Executive Director, National Headache Foundation. “This report shows there is much work to be done to help them get the proper diagnosis and treatment they need to be able to lead productive lives.”

20 Responses to Study: Chronic Migraine is Disabling and Severely Affects the Ability to Lead a Productive Life

  1. jeselle says:

    Dear Kerrie,

    Migraine certainly has cignificantly disrupted my life and alof of lives from the blogs I lead. I wish more could be done. I know that I’ve been looking for a cure or a better way to manage these beasts but there isn’t alot of success. Yup, alot of lost productivity at home, at work, and on the social front. It can be tricky with the marriage. Eee gads. It’s a tough row. I think if this were predominantly a
    men’s illness maybe there would be more done?

  2. K1Frog2 says:

    It’s about time! I’m getting tired of being seen as a slacker when I miss work for a headache!

  3. stoic110 says:

    hmm… i’m a gay man and i suffer from severe chronic migraines, but find it interesting that the condition seems to be focused in the female population. i wonder if there is a correlation between sexuality rather than simply gender? does anyone know if such research has been done?

    as a graduate student i don’t have many formal obligations, but miss out on lots of potentially productive time due to debilitating migraines – the most recent of which has been lingering for upwards of 15 days. no preventative or acute therapies have been successful as of yet. alas, frequent pain has become the norm.

  4. I always feel like a slacker at work, when I’m not, and I’m always struggling to keep up with housework! I hate living with daily chronic pain!

  5. Shawnie says:

    I have been on permanet disability for chronic pain, migraines for 30 years. If, in a 3 month period, I only missed out on 5 days, I would call that a good 3 months. Probably the best in years.
    I hope to get to that someday. Then I could go back to work and have a life I could count on.

  6. NHKAT says:

    I’m a bartender and I just lost my weekend (money making) job due to my migraines. I had one like 4 weekends in a row, I worked anyway (throwing up in the bathroom every hour or so), they didn’t tell me it was migraines but that they had complaints I was too slow “lately”. I wonder if any of them could do it at all in the condition I was in. So, now I just have my weekday job and, I am hoping I can make it on that.

  7. Jamie says:

    I was diagnosed with chronic migraines when I was 16 years old. I am now 22.

    This is a problem that really needs more attention! My work generally understands when I have migraines and can’t come in but if there were some sort of better explanation as to why I feel permanently problem-ized (I don’t consider myself disabled) I would feel better.

  8. Dana says:

    I’ve been in pain for 10 + years now, since my daughter was born and it never stops. I’ve taken many meds and now take tegretol (anti seizure) and imitrex (just switched because I wanted to get off of Replax after 6 years). I see a chiropractor weekly; have tried acupuncture, seen a couple neros; too many doctors to remember, allergist, dentist, eye doctors, had every test I can think of (because doctors will not try to figure it out for you). I keep wondering if the migraines or the pills are going to kill me. I keep wondering if I’ll live to be old. I’m 31; female. I have a good job in a corporate accounting department. I’m switching my bach degree to teaching. I’m hoping I can function better and on less meds as an art teacher; with less stress not at a desk all day… getting summers off to try and see more doctors and get better. I’m a single mom because I left my husband of 10 years a couple of years ago because he wasn’t supportive of my sickness… if anythin I started to believe he added to it. If you told me today I would live like this forever, I don’t know that I’d want to live… and if I did I’m certain I’d make my focus on getting on disability. I’m half a mother, half an employee and was half a wife. This is truly hell and my happiness depends on if I wake up not needing to take more pills for pain. Please, someone out there find some answers.

  9. Annie says:

    I just wanted to share what’s been working for me. I’m 44 and have had migraines since age 8. In the past 3 years, they have become almost a daily event. What’s been helping me–and hopefully might help some other folks. I’m taking Coenzyme Q-10 at 400mg. The brand I use is Nature’s Bounty. I take Loestrin-Fe (birth control) daily and during the inactive pill days I use the Vivelle Dot estrogen patch (.1mg dose). I take Frova if I get a migraine. I have to exercise a minimum of one hour daily. I can’t have many schedule distruptions. I was an actor, for instance, but I don’t think I can continue in that career because there are too many schedule disruptions. I have to sleep and eat at the same time daily. The good news is that I’ve gone from chronic daily migraine to about 3 to 5 per month. It seems to be getting less every month. Good luck to everyone out there suffering with this condiiton. Annie

  10. Samantha says:

    I would like to share what has worked for me since I never see it on headache websites. After several months of daily migraines, two neurologists and a stint on Topamax, which made me borderline suicidal, I found a migraine and pain relief center. I credit this doctor with saving my life because at this point I was losing my will to live.
    I told him about my experiences with topamax and he told me that it only works for a few people, and he suggested a new plan I had never heard of. He put me on atenolol and doxepin (beta blockers, for hypertension and an anti-depressant–even though I wasn’t depressed other than the migraines) at first I started on 25 mg and then went up to 50mg. In less than a week my migraines were gone. He told me 50% of people after one year on these pills leave migraine free. They believe it retrains your brain somehome. I have finished my year, but am a female in my mid-twenties, so the doctor said it may take me a while to ween myself off of the pills. The only negative about the pills is whichever one is an anti-depressant makes me very tired, and is the reason you must take it a couple of hours before you go to bed.
    YOU MUST FIND A DOCTOR THAT SPECIALIZES IN MIGRAINES! Most are in the major cities, so you may have to travel, but it is worth it. I was seeing one of the best neurologists in NYC, but after trying one thing and then topamax, he was stumped.

    Good luck! It will get better, you just have to find the right doctor!

  11. Wayne Alves says:

    I have been suffering with chronic daily headaches and migraines since 1996. I have missed a lot of work due to these headaches and migraines. My work history is proof to that. I haven’t been able to hold down a job because of these headaches. I have been told that i have a bone spur in my neck that is close to my spinal cord and is the main reason for my headaches. I was told by three neurologists that they would not operate on the bone spur because of how close it is to my spinal cord. I have been denied disability benefits and income because the government doesn’t think my CDH is a disabling condition. I can not function properly at all on a job or even during my college classes. I need proof that Chronic Daily Headaches and Migraines are a disabling condition so that i can collect SS Benefits and SSI. If you know of a site or how i can get the proof please email it to me as soon as possible. And please put CDH proof in the subject line. Thanks for taking the time in listening to my problem.

  12. scott smith says:

    i am 33,and have suffered since teen years,… and male,, which is fairly uncommon with headaches, increasingly migraines within recent years. I take imitrix almost daily, and give self 6mg shots when too severe. I have two boys 3, and 20months i feel helpless with headaches and am growing more depressed evey month docs feel as a male… well its not common, no big deal,i see a chiro weekly and was rearended last year while at a stop sign, ever since then migraines are very frequent im in construction, so smells are very agggravating too,, help i feel lost

  13. clare jones says:

    hello, i have had chronic cluster migraine (the worst kind) for 7 or 8 years now an i’m 24. it is so so debilitating and painful. it makes my blood boil when people refer to them as “just a headache” they have absolutely no idea what it is like. the medication i have been on mean i will struggle to give my husband-to-be the children he is desperate for. i am no longer on any of the preventive treatments as none of them worked. i developed IBS from them and now have to deal with that when i’m not dealing with migraine. i feel so lonely with it. i cannot leave the house without having enough doses for the day. i’ve shed many tears over the way my life has been taken over. last night i was so incredibly ill, i vomited four times in as many hours – and there was absolutely nothing left in my body. i couldn’t even keep plain water down. i loathe my life because i am ill all the time and nobody understands. in my last job i was off probably a week of every month? and that was only for the most painful. having said that – as a result of being ill all the time it took nearly 2 years for me to get another job.

  14. clare jones says:

    by the way i take co-codamol 30/500. two tablets on the onset, and 1 an hour after to knock it on the head. then take 2 3-4 hours after the single dose which should subsequently reduce the pain and allow it to subside. i would suggest that anyone here doesn’t know the cause (like me) have a blood test done and find out if you are hypoglycaemic – i found out i was when i had an operation last week. i’ve jsut had my widsom teeth removed to help with jaw pain that has been causing some migraines. i would suggest this if you get that pain too. i’m also going for botox in december just before me wedding to see if that also helps.

  15. Mikelle Novak says:

    I started having headaches when I was two years old. All I remember from being little is hiding from the sun, and laying in the dark with a bowl by my side:/. Im 16 now, I have full blown chronic migraines, but thankfully I have managed to overcome the nausia, at times. Ive been to the doctors many times, and all theyve done is hook me up to morphine, give me shots to the forhead, crack my neck, and my neurologist was not taking me seriously. I cant go to school, I cant do normal things, I miss out on life, as much as I try not to. I fear I wont be able to work.. I cant explain to anyone how disabling a migraine can be. When I need to stick my head in a bucket of ice water for awhile, does no one understand? :/

  16. Jill Lindberg says:

    I like many of you suffer from daily chronic migraines and I also have chronic pain syndrome, in my neck, shoulders, back and hips. I had a stroke in Dec. 2008, since then I’ve been living in a group home. I have been denied social security, even though I have 4 doctors who have signed of on me as being disabled. I don’t understand the system. My pain doctor and past neurologists have wanted to do botox but because it wasn’t approved by the FDA the insurance wouldn’t go for it. But as of Oct 2011, the FDA has approved it usage for chronic migraine sufferers. I’m scared, I have heard good things and bad things about it.

  17. Elizabeth says:

    At work they had to let me go due to my absences,not even my doctor letters they would acept I did a family leave form and it wasnt much my doctor put my condition on the form and stated that the migraine would be until death. Every day it will be getting worse and worse,ive tried all types of meds d nothing has work now they will do the Botox to see if it works but how things happens and others think its bullcrap its just facking not to work.

  18. Lisa Toler says:

    I did not start having migraines until after 40. And until you experience them, you TRULY have no understanding of how debilitating they can be. I have seen two neuros – one who had me on so much Keppra I was walking into walls, dizzy and could not speak well! Even though she knew this, she kept me on this dose.

    Finally went to see another neuro (PA) and she has done numerous tests on me as in the past year I have also had 3 seizures, and they cannot find out why. Next, I have always been a high strung, anxious person, but have handled all the stresses in life very well up until now. Between the chronic migraines (some of which last 3 days), unpredictable seizures and the severe anxiety I am suffering now, I am not sure how much more I can take. People really dont understand unless they have walked a mile in your shoes!

    Again they are adjusting my preventatives. Have been on Keppra, Depakote (which made my hair fall out) and Lamictal. The Lamictal is the one I am currently weaning off of and it gave me tremors and severe memory loss. They are then going to try Topamax again,because at one time it did work.

    What do all of you others do to handle life. I feel like my migraines and anxiety are severely affecting my life. The seizures are just scary because I remember nothing afterward. Also, I cant drive for 6 months because of the seizures.

    There has to be something out there for us. I have taken it all. Now if I go to urgent care, they give me a shot of Toradol and my migraines do not respond to this, but they dont listen to me.

    Sorry to go on and on, but if anyone has any suggestions, please let me know.

    lisatoler66@yahoo.com

    ********
    Lisa,

    I’m sorry you’re suffering so much. I’ve found mindfulness and meditation to be most helpful in dealing with the emotional upheaval of my chronic migraine. Here’s a recent post I wrote on it, which has some audiobook recommendations: http://bit.ly/x8qpmA

    Also, you might want to visit a forum (like Migrainepage.com or the one on Migraine.com) and see if others have suggestions.

    I wish you all the best.

    Kerrie

  19. LadyRukia says:

    I started getting migraines when I was 10 and they got became more severe as I got older and chronic in my last year I was 15. I’m now 26 For me the pain & nausea is the worst because it’s so severe that I would have to go to the hospital and get IV’s…then the confusing disorientation that makes me week and trip and not talk right. And it last for days and the anxiety, depression and and fear that comes with the migraine…is like the shadow. The shadow is a warning of the battle your mind and body will war against each other and it’s scary because for days I’m not going to eat, drink or do anything and even though I will try to eat and drink It know it’s unless. I will try to sleep in a perfectly still position as possible with the air-conditioning going full blast and hope for the best. Try to ignore the pain,nausea, hallucinations(aura) and the ring sound. While fighting the anxiety and depression and fear that I might die of starvation or accidental overdose or falling down and hitting my head or just going mad by the pain in my head and desperate for relief. Then when I do feel better I will try to get up be as careful not to stumble because I survived so I must be careful as I clean myself up and try to go on with life as a normal person even though people around me tell me what I have missed, or that I’m slowl, or that it’s all in my head. I can’t drive because I get so many migraines and with visual and disorienting and medical effects. I have missed many events and activities and doctors appointment and whats worse is you think that the doctors would know better than to drop you but yes they have stopped seeing me because I have missed appointments because of migraines. Migraines have taken everything from me…my career,family,friends,love,independence, life. So why don’t they care more we have wonderful technology it’s the digital age why can’t they Skype with us or get are meds delivered to are door or by mail we need more help than most we are struggling some more than others because we don’t have others to help us.

    • I’m sorry you’re struggling so much. It’s hard enough to feel the way you do physically without having to deal with everything else. You make a good point about telemedicine. It’s being used a lot for concussion, which I think will be a testing ground for using it for migraine and other headache disorders. I’m not sure when that might happen, though.

      For meds by mail, you may want to look into Health Warehouse or Pill Pack. I’ve ordered from Health Warehouse and the service isn’t great, but the prices are low and they eventually ship the meds. Just don’t wait until the last minute to place the order. (It took them six days to tell me my drug wasn’t in stock.) I’m not sure about Pill Pack’s pricing, but the sort preventive meds into groups, putting them in little packages with the date and time of day you’re supposed to take them.

      Take care,
      Kerrie

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