Stephanie Watson

The stigma of chronic migraine

At least once a week throughout my childhood, a migraine would force my mother to retreat into her bedroom. She’d shut the blinds and burrow under the covers, overwhelmed by a pain so severe it turned the faintest sound into an agonizing roar and launched waves of nausea with the slightest movement.

Though my family and I tried to be sympathetic, it was hard for us to fully comprehend my mother’s migraines or understand why she had to miss so many events because of them. When you’re on the outside looking in, you can’t begin to appreciate how severely disabling—and life disrupting—chronic migraine can be.

The “unseen” pain

Migraines are often misunderstood, or dismissed as “just a headache.” Yet they have the capacity to disrupt a person’s life, relationships, and sense of well-being. A study from Thomas Jefferson University in Philadelphia, released last week in PLoS One, found that chronic migraine sufferers experience as much social stigma as people with epilepsy—a disease that produces far more obvious and dramatic symptoms.

Some of that stigma is external—for example, getting treated differently by friends or colleagues. “Migraines are the unseen and undocumented pain that takes them away from work,” says Dr. R. Joshua Wootton, of pain psychology at the Arnold Pain Management Center at Beth Israel Deaconess Medical Center, and assistant professor of anesthesia at Harvard Medical School. “There’s no empirical test for migraine yet. That’s why people who report these problems with chronic pain are often not believed or are thought to be exaggerating in the work environment.”

Yet much of the stigma, the study found, is internal. Migraine sufferers often anticipate that their headaches will elicit a negative reaction from friends and colleagues, or that they’ll be less productive because they have to miss work so often. Such subjective experiences of stigma can be as damaging to health as overt discrimination or the loss of social relationships.

Treating migraines

Effective migraine treatments are available—but many migraine sufferers don’t take advantage of them, either because they don’t seek help or they mistakenly believe they’re just suffering from regular headaches. “I think 80% of all migraineurs can be effectively helped, but only about a quarter of them are effectively helped at the present time,” says Dr. Egilius Spierings, associate clinical professor of neurology at Harvard Medical School.

The gold standard for migraine relief is a class of drugs called triptans, which include sumatriptan (generic, Imitrex, others), rizatriptan (generic, Maxalt), and zolmitriptan (generic, Zomig). When taken at the first twinge of a migraine, triptans can relieve pain, nausea, and light sensitivity. “These medications have been on the market for about 20 years now,” Dr. Spierings says. “They have been used widely, and are generally very safe and well tolerated, and also very effective.”

As my colleague, Heidi Godman, has written in this blog, there are also drugs that work in advance to prevent migraines—including beta-blockers, antidepressants, anti-seizure drugs, and Botox. Although preventive medicines don’t work quite as well as the triptans, says Dr. Spierings, they can reduce migraine frequency in some people who get them regularly.

Part of migraine prevention involves avoiding the sights, smells, situations, and foods that trigger these headaches. Keeping a headache diary can help identify triggers, which may include loud noises, bright lights, strong scents, hunger, fatigue, and foods such as chocolate, aged cheeses, alcohol, or MSG.

The emotional component

Migraines aren’t just a physical condition. Living with chronic pain, or the constant worry that a migraine can strike at any moment, can take an emotional toll, too. Migraines have been linked to an increased risk of depression. A study presented last February at the American Academy of Neurology’s annual meeting found that women with a history of migraines are 41% more likely to be depressed than those without the condition.

When you can’t find effective ways to manage your migraines, “that frequently results in feeling helpless, hopeless, and as if everyone is against you,” Dr. Wootton says.

If you’re having these feelings, it can be helpful to see a psychiatrist or psychologist—particularly at a center that specializes in pain management. “If you have considerable anxiety and/or depression, addressing those issues is important because they negatively affect migraine. They also make it much more difficult to cope with a condition like migraine,” Dr. Spierings says.

Mental health professionals can offer behavioral techniques (such as meditation) to address chronic pain—and the stress associated with it. They can also help counter any negative perceptions about migraine.

Migraine can be a frustrating condition to treat because there is no quick “cure.” My mother has tried just about everything, and some therapies have been more effective than others. Probably the safest, surest way to migraine relief is to work with your primary care physician, neurologist, or headache specialist. With some trial and error, you may find a treatment that finally relieves your pain.

Comments:

  1. John

    Very good article….thank you for posting it! My mom and my uncle have been suffering from Migraine since they were in their teens.

    I will share this URL with with.

    Once again thank you.

    Jon

  2. Paola

    I am a doctor and when a person has migraine I recommend that you mix various analgesics and NSAIDs, opioids and paracetamol. In case of migraine is very repetitive, the patient must receive antihypertensive profilactivo manaje or anticonvulsants.

  3. CancunSteve

    Not all headaches are the same and symptoms do vary. Avoid those things that trigger a migrane. For starters, don’t smoke. Avoid stress.

  4. Margarite

    The million dollar question is how to get a doctor to do anything or even to believe me after 2 MRI’s and 2 CT scans and an MRA tell him that nothing is wrong with me. The look they give when I say that I have had a headache every day for 4 solid years is so disheartening that I just want to walk out right then and there. And then if they do give me meds the effects are worse than the pain! I give up on the medical world helping, which is why I want to be a nurse or doctor: to be that one person who can give the struggling lost sufferer the answers. Or even to tell them that there are not answers is still an answer.
    Thanks for the article and I agree with Chatline: “It’s arduous to seek out educated individuals on this topic, however you sound like you understand what you’re talking about! Thanks”
    Live Long and Prosper!

  5. Becky

    also…they mention in the article that you should avoid the sights, smells, situations and food that trigger migraines…but how is anybody supposed to do that? I mean seriously…it’s unrealistic

  6. Becky

    I find it very comforting that other people have felt my pain…especially since it’s “unseen.” It’s rather difficult to have a social life, work life, and personal life when you are a chronic migraine sufferer. Has anyone seen the commercials where a woman is laying on the couch living a “maybe” life? That’s how I feel…and I feel like I have tried everything…eat this…don’t eat that…try this…don’t try that…etc. I have tried everyone to no avail! The only thing that works for me is Treximat…but my health insurance only allows me to get 9 pills a month…which are completely unrealistic bc I get 3/4 migraines a week…so who knows.

    One thing I have found really helpful though is juicing. It is very time consuming to juice…but I have found that it stops the frequency of my migraines. One thing to note though…make sure you ALWAYS have juice available bc it is used as a meal replacement and if you don’t eat…that can trigger a migraine…so just a suggestion…good luck to everyone on here!

  7. Emma

    ” It is a neurological disease and it is not all in our head…it effects, our family, careers, social life,etc. And I really know the pain it causes, as I am also a victim of migraine, though in minor quantity, but I am suffering from it and is already under doctor’s check-up.
    “”Indeed a Great Article, with the Concept of Windows and doors for Animals too… (as said by manny in the blog).
    And coming back to the topic, really you have made an extraordinary beautiful design.
    Great Thinking!!””
    Reagrds
    Emma

  8. cynthia

    Thank you for this brilliant post.

  9. EmotionFocused

    In our model, adjusted stigma was similar for chronic migraine and epilepsy, which were greater than for episodic migraine. Stigma correlated most strongly with inability to work, and was greater for chronic migraine than epilepsy or episodic migraine because chronic migraine patients had less ability to work.

  10. Richard

    Isn’t Immitrex a rather strong medication? As a sufferer of migraines from time to time, I can say that they can be rather debilitating, but I have heard that Immitrex can cause some nasty side effects.

    Has anyone here had experiences with that?

    • gail

      I have taken Imitrex, and I know there must be some people that have side effects from it, the only side effect I had was pain relieve. Triptans are the way to go.

    • Rosa

      I suffered migraines for years. I lost jobs that I really liked and I needed. I took different medicines without any help. One day the migraine was so strong I was crying in bed alone, my husband had to go to work. I decided to drink a half cup of black coffee without sugar; it helped a little. Then I went for Accupuncture for a year and half. I haven’t have a migraine attack ever since.

    • Lisa

      I have used Imitrex for years and it has worked well for my migraines. I don’t experience any side effect worth noting. I take 50 mg (there is also 100mg) and it works within 30 minutes up to 2 hours after I take it and lie down. The headache will be gone in that time but I feel drained of energy the rest of the day. I have also used Zomig but Imitrex works better for me.

  11. Robert Morelli

    Thanks for sharing with all of us the Incredible post on your blog. It is really illusive. People who have a disease often experience stigma, a socially and culturally embedded process through which individuals experience stereotyping, devaluation, and discrimination. Stigma has great impact on quality of life, behavior, and life chances. We do not know whether or not migraine is stigmatizing.

  12. peruksatis

    Waiting for the new Make your article is really nice thanks

  13. Herbal Pills Store

    Great article…!!!!!!!!
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  14. Darby

    Migraine is so debilitating and the pain so hard to deal with, I hope there will a lot more research done and we find a cure or a medication that will ease life of others with migraine.

  15. Chris

    I take Kratom for my headaches and backpain. It sound crazy but this all natural plant works better than Pain pills.

    • gail

      I am very glad this works for you but please be aware of anything which are addictive and could lead to dependence and FURTHER migraines. :(

      It is considered to be in the same category as cannabis and magic mushrooms. And the government is currently looking into making it illegal or regulated.

  16. George Rock

    The worst than migrane is migrane with aura. Really you MUST stop doing what you are doing. I have an image to illustrate what I have seen over the transit in my eyes. Pain follows the vision disturb.

  17. Jen

    I was bombed with immitrex by my doctor with no cautions at all. I have a pfo hole. I now have long term brain injury which severely handicaps my life. It is always interesting to read how ‘safe’ these triptans are. They are so keen to have an instant solution, that they are in denial about what can happen.

  18. Idalia Adela Leal Santana

    Estos consejos de salud son fabulosos, en lo personal siempre los leo y los comparto con mis hijos y familiares desde México les envío un cariñoso saludo, que Dios los bendiga y les siga dando más sabiduría.
    Idalia.

  19. david

    Dr Spierings is promoting a false and marketized view of problems in pain care. My guess is he doesnt want the public to know that on average 50% of people with migraine arent diagnosed properly after five years. Neurologists have a longstanding prejudice toward people with headaches. Although veterinarians on average receive 75 hours of education in pain care- doctors receive on average 7 hours of education in pain care. A migraineur seeking medical help is likely to be misdiagnosed and given an opioid for their pain and not told about patent foramen ovale or the possibility of migraines leading to stroke. The really problem in migraine treatment is our medical profession focuses on profits and not people

    • borzo

      I have never, ever found this to be the case. My doctors have always been very caring, and listen to what I am saying and strive to give me the best help they can – when they aren’t sure, they talk to someone that knows more than they do. I can only say good things about their treatment of me. I don’t think the financial reward is much on their radar when they are discussing my treatment. I think they truly love helping people. I’m sorry your experience is not so good as mine.

      • fern

        I am really glad you had a good, sensitive physician, borzo. However i will have to agree with David. My heart breaks for my sister who has violent migraines with no relief. She has been to many neurologists, chiropractors, and such. Yet after utter failure in treating her, their frustration with her surfaces… and they subtlety start to blame her… “rebound headaches”, she’s “not following directions”, etc. And, after first assuring her that she’s come to the right place for her treatment, they advise her to seek it elsewhere. In the meantime, were it not for her upbeat personality, her life would be total misery. HELP, PLEASE!!!!

    • Avondale Chiropractic

      The problem is that the diagnosis of headaches of any kind is based on clinical presentation. There are few, if any, objective tests for primary headache disorders.

      Hopefully bio-markers can be developed to objectively identify types of headache which should lead to more effective treatments.

      ~ George W Kukurin DC DACAN

  20. SMD

    Great article…I was recently diagnosed with chronic migraines in the last year. It has been a rough road so far, but I totally got it when you talk about ‘unseen pain’. There are people in my life, mostly co-workers who don’t understand because you can’t actually see the pain I experience everyday. Thanks for this article!

  21. Mr.Tonny

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  22. Dennis

    This article says it all. I’ve been suffering with these for 20 plus years. For me, this is a miracle cure for migraines. I have tried everything short of a lobotomy. The triptan medications should be OTC or at least not limited in qty by Insurance providers. I may get 10 migraines in a month or 25 in a month. My insurance however, tells me I’m only allowed to have 18 migraines per month. If it were up to me, I’d take imitrex every day as a preventative medicine! I am 100% sure I would rarely get these debilitating things.

    • Elspeth

      Dennis – its not because of insurance. Imitrex is way more cost effective then having you seen in the ER or even in the physician’s office. The FDA has limits on these drugs because they are SYSTEMIC vasosuppressants. They can and have caused heart attacks at use more frequent than every other day. This does not mean that they are not safe to use, just that they cannot safely be used daily.

      I am a chronic migraine suffer. I sometimes have daily migraine. I do use Imitrex on occasion for the worst migraines, but you wouldn’t catch me using it daily due to toxicity. Imitrex (and all other triptains) is NOT approved as a prophylactic medication and shouldn’t be used as one, however a good physician should be able to identify a useful prophylactic medication for you.

    • gail

      Dennis, I am next in line for surgery! but she is right, you cannot take them more than 2 to 3 times a week at the very very very most. I have had daily headaches for 14 yrs I COMPLETLY understand that you get to the point where you could tell me any statistic about a drug and my first thought is, thats great, give me something stronger.

      Any drug you take regularly can lead to rebound headache and/or physical dependence. Which totally sucks. Unfortunatly I am a nurse as well as a chronic pain patient. So while my stupid nurse brain is talking to my logical brain my headache still says, “SO WHAT?” But you do have to listen.

      There have been studies that Excedrin Migraine is as effective as tripans for abortive relief. I love this. Except everything in this drug can cause physical dependence and rebound headaches. I hope that information might help you but please….proceed with caution.

      Feel better!