Updated July 22, 2018.
Migraine is frequently misunderstood by the general public and even by some in the medical community. Overtime misinformation, stereotypes, and discrimination has led to some dangerous migraine myths.
Despite the advancement of science and technology, dangerous and surprising migraine myths are still widespread.
Unfortunately many of these myths are still, even today, reported in the media. This perpetuates further misinformation which is can mislead loved ones, friends, co-workers and even patients ourselves.
Dr. Joel Saper MD, FAAN, Founder and Director of Michigan Headache & Neurological Institute said:
“There is no condition of such magnitude that is as shrouded in myth, misinformation, and mistreatment as is this condition, and there are few conditions which are as disabling during the acute attack.”[i]
To help others manage migraine as effectively as possible these myths must be dispelled.
We need the facts not just to improve our own condition but to reduce the social stigma and discrimination that so many endure as an additional burden to migraine.
Contents
MYTH: Migraine is caused by psychological factors like stress or depression
REALITY: Migraine is a neurological disease
Migraine is classified as a neurological disease which is very different to a psychological disorder. [ii]
Psychological disorders refer to conditions like depression or anxiety.
Migraine, on the other hand, results from a physiological dysfunction and sensitization to external stimuli stemming from the nervous system. When triggered, a cascade of events lead to the symptoms experienced by those with migraine including moderate to severe head pain, nausea, vomiting and sensitivity to light and sound amongst other things.
Dr. Saper confirms that migraine “is not a psychological or psychiatric disease but one which results from biological and physiological alterations.” (i)
Furthermore, the late Dr Fred D Sheftell, Founder of the New England Center for Headache states that:
“Migraine is absolutely a biologically-based disorder with the same validity as other medical disorders including hypertension, angina, asthma, epilepsy, etc. Unfortunately, there have been many myths perpetrated in regard to this disorder. The most destructive of which are ‘It is all in your head,’ ‘You have to learn to live with it,’ and ‘Stress is the major cause.”(i)
Migraine itself can be a difficult, progressive and chronic disease that devastates families, jobs, careers and the quality of life for those with frequent or severe attacks.
It’s perhaps not surprising to learn that a significant proportion of those with migraine may also experience anxiety and or depression.[iii] After several years of unsuccessful treatments or consultations, it can be hard not to lose hope with chronic migraine.
The danger comes when migraine is misdiagnosed as a psychological disorder.
A doctor with this diagnosis may prescribe unnecessary and even counterproductive medication. For example, if a doctor prescribes specific drugs to treat clinical depression the underlying migraine condition may remain unchanged.
Without a reduction in migraine attacks the patient may continue with depression and appear ‘unresponsive’ to the dose or treatment. This can lead to an increase in dose or further medication.
Whilst it’s important for patients and their families to be aware of this distinction. It is critical that healthcare professionals get this diagnosis correct.
You might think it’s safe to assume that most doctors are adequately trained to recognize, diagnose and treat migraine. You’d be wrong.
This leads to the second dangerous migraine myth…
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MYTH: Any doctor can recognize and properly treat migraine
REALITY: Research has shown that as few as 1 in 20 with chronic migraine receive an appropriate diagnosis and treatment from a physician.
The International Classification of Headache Disorders most recent revision (3-beta) define chronic migraine as headache on at least 15 days per month for at least 3 months, with the features of migraine on at least 8 days per month.[v]
There are millions of people who suffer chronic migraine. But there are even more that experience episodic migraine who have less frequent attacks.
The number of people with episodic migraine who visit the doctor, receive an accurate diagnosis and an appropriate treatment is just 26%.[iv]
That’s no mistake. Around one in four people are ticking those three boxes.
The same research revealed that if you visit your doctor for migraine, only 58% (just over half) would receive an appropriate diagnosis and minimally effective treatment.
A minimally effective treatment is classified as any guideline-recommended treatment for acute migraine.
These stats are relevant only for those with episodic migraine.
What about chronic migraine?
For those with chronic migraine the results are worse.
Around 5% of patients with chronic migraine traverse all three criteria for minimally effective chronic migraine treatment & diagnosis according to the research lead and headache specialist Dr. Richard Lipton.
We are still decades behind other health conditions in the overall quality of care delivered.
MYTH: Migraine is just something you have to live with
REALITY: There are many effective treatments & strategies to reduce the severity and frequency of migraine
It is true that there is not a universal cure to fix your migraine condition. That being said, there are effective treatments, therapies, procedures, behavioral and lifestyle changes, strategies, and approaches which can lead to significant reductions in migraine frequency and severity.
Most doctors would consider an effective treatment to reduce either the severity or frequency of migraine attacks by 50% or more. Studies have found reductions of closer to 80% during clinical trials when combining several effective approaches together.
This is another dangerous migraine myth that underscores the importance of each individual with migraine to be self-aware, with a firm grasp of the facts about migraine to ensure they receive adequate treatment and effective management strategies.
MYTH: Migraines aren’t life-threatening
REALITY: Migraine has led to death
Migraine has induced stroke, coma, aneurysms, permanent vision loss and even death.
According to Michael Coleman and Terri Burchfield at MAGNUM:
“Twenty-seven percent of all strokes suffered by persons under the age of 45 are caused by migraine”. (i)
Stroke is the fourth leading cause of death in the United States.[vi]
Before you panic it helps to understand these number in perspective.
For the general population, research found the annual death rate from stroke was 175 per 100,000. Or 0.18%.[vii]
A meta-analysis study of stroke and migraine research found that the range of stroke in those with migraine varied from 3.56 to 350 cases per 100,000.[viii] Researchers concluded that the relative risk of stroke for someone with migraine is 2.16. A ‘relative risk’ of 2.16 means that you’re around twice as likely with migraine to experience stroke than the average person without migraine.
So if the risk is 0.18% for the general population. Then it’s 0.36% for those with migraine.
This might be higher than what you expect but there is still a 99.64% chance you’re in the clear. Most people who are familiar with health statistics would consider this a comfortable and acceptable risk.
There are certain groups however with higher risk. For migraine with aura the relative risk increased to 2.27. For migraine without aura, the relative risk decreased to 1.83.
One of the biggest risks comes to those who take oral contraceptives. Case-controlled studies show a relative risk of 8.72. That’s almost a nine fold increase in risk versus the general population.
If you have migraine, you may want to discuss stopping oral contraceptives with your doctor.
Other factors can also have a significant effect on your risk include smoking, previous family history of stroke, hypertension, high blood pressure, unhealthy lifestyle etc.
If you are concerned about these risk factors you should speak to your healthcare professional to minimize your risk where possible i.e. quit smoking and oral contraceptives.
Migraine is also associated with suicide.
One study reported a three-fold increase in the suicide rate from those with migraine compared to the general population. [ix]
Migraine can have a devastating impact on normal living for an individual. Not only do they experience extreme pain and disability during attacks, but they also face social ostracism, isolation, job loss, strained personal relationships and discrimination.
Others can be quick to judge those with migraine as people who “can’t handle life” or who are drug addicts which is dangerously wrong.
One of the world’s top headache specialists Dr Stephen Silberstein confirms that those with migraine:
“Must not only cope with their pain, but also with society’s misunderstanding of the disorder. Migraineurs are frequently dismissed as neurotic complainers who are unable to handle stress. The truth is that they frequently battle against great odds in order to hold down jobs and support families…” (i)
The more people who understand the truth behind these myths, the quicker we can move toward finding better treatment and breaking down the stigma of migraine.
Have you experienced discrimination or stigma? Let me know in the comments.
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Article References
[i] Migraines: Myth vs Reality. MAGNUM. http://www.migraines.org/myth/mythreal.htm Accessed June 28 2016.[ii] Steiner, T. J., et al. “The prevalence and disability burden of adult migraine in England and their relationships to age, gender and ethnicity.” Cephalalgia 23.7 (2003): 519-527.[iii] Lipton, R. B., et al. “Migraine, quality of life, and depression A population-based case–control study.” Neurology 55.5 (2000): 629-635.[iv] Lipton, Richard B., et al. “Barriers to the diagnosis and treatment of migraine: effects of sex, income, and headache features.” Headache: The Journal of Head and Face Pain 53.1 (2013): 81-92.[v] Headache Classification Committee of the International Headache Society (IHS. “The international classification of headache disorders, (beta version).” Cephalalgia 33.9 (2013): 629-808.[vi] Towfighi, Amytis, and Jeffrey L. Saver. “Stroke declines from third to fourth leading cause of death in the United States historical perspective and challenges ahead.” Stroke 42.8 (2011): 2351-2355.[vii] MacClellan, Leah R., et al. “Probable migraine with visual aura and risk of ischemic stroke the stroke prevention in young women study.” Stroke 38.9 (2007): 2438-2445.[viii] Etminan, Mahyar, et al. “Risk of ischaemic stroke in people with migraine: systematic review and meta-analysis of observational studies.” Bmj 330.7482 (2005): 63.[ix] Breslau, Naomi, Glenn C. Davis, and Patricia Andreski. “Migraine, psychiatric disorders, and suicide attempts: an epidemiologic study of young adults.” Psychiatry research 37.1 (1991): 11-23.
Yes,it is true. Having chronic migraines have been a major problem. Work didn’t understand that anxiety & panic attacks, alongwith depression and dealing with caregiving children and disabled family members, and other hardships make attacks come more frequently, and weather conditions can make it worse. I got discriminated for having issues that my health and my family were not as important as making sure I come to work.
I’ve seen discrimination first hand in the workplace. It’s such a shame and absolutely horrible for the individual. Like we don’t have enough on our plate anyway.
The more we know our rights for equal employment and the more others are aware, the better. I hope you’ve moved on to a better place. Thank you for your comment JK.
Thank you Carl, for bring some vast exposure for us sufferers. You have definitely cleared up myths for me and educated not only myself but the general public too, (sufferers and non-sufferers). I agree with J.K. I have found professionally and socially, people just don’t understand, a migraine is ‘just not a headache’. People who are fortunate enough to experience a headache once a year and not suffer from migraines, don’t understand the underlying pain, agony and disruption it causes in your life. Oh when there is a thunderstorm coming, straight away I will get a migraine. Even on the airplane, I could get an attack! I know I have missed out on many social events and people judge you straight away and think you are weak, I have been told, just pop some pills and keep going. Migraines being a neurological disease, (thank you for pointing it out, it’s not a neurological disorder) have a massive impact on your life, it disables you. I feel I have lost friends from this health issue, but also have seen who my real friends are.
Hi Marianne, very true. To be fair to everyone without migraine, it is hard to understand something you can’t see… but too many discriminate and belittle those with are genuinely doing the best we possibly can.
Thank you for all your work to help migraine sufferers. I attended your World Summit because my son has suffered from chronic migraines that seriously affected all aspects of his life. Because of the knowledge gained through that summit, I sought out one of the 500 neurologists who are migraine specialists in the U.S. Fortunately, he practices in a town nearby. What a difference going to someone who has the knowledge and understanding to help. I was so relieved. The neurologist has even set up future appointments to assess the treatment plan and check in. Again, thank you for providing the information needed to find quality help, ask questions, and understand this disease.
Hi Paula, fantastic news! I’m so glad you’ve found someone who is genuinely interested and helping. I wish your son and you the best of luck!
Great article, Carl! I would add one additional thing about stroke risk for people with migraine. While it’s true that people with migraine with aura have an increased risk of stroke, you didn’t mention the rare subcategory of migraine with aura, Hemiplegic Migraines. People with Hemiplegic Migraines are at an even greater risk of stroke.
I personally have experienced workplace discrimination due to migraine. I’ve also watched as friends and even a few family members fell away because they either don’t believe migraine can be "that bad" or they give up on inviting you places or even visiting. Having to constantly cancel plans has a devastating effect on relationships of any kind. Just recently my husband asked for a divorce, because he can’t see himself dealing with my disability… HM (Hemiplegic Migraines), in the years to come. Migraines and Hemiplegic Migraines are thieves. They steal our lives and leave us with what often becomes just an excruciatingly painful existence. Thanks for being a migraine advocate!
Rose Garcia
Denver, Colorado USA
Hi Rose. I too suffer with Hemiplegic Migraines and have done so for 20 years now. Although having had many there are times you still aren’t sure if you are having a stroke or another HM. The right side of my face has partial numbness now and can only smile awkardly with my left side. I miss my smile, that use to happen so easily. Hang in there! I don’t know you but your husband has lost himself a strong wife because by gosh it takes tolerance and perserverance to deal with these migraines. 🙂
Agree, I have migraine with aura which is bad enough. I can’t even imagine what it must be like with HM. You deserve all the good fortunate and support that comes your way.
Good point with Hemiplegic migraine, I couldn’t find the data on that so if you’re aware of any studies that comment on the risk specifically for HM let me know. Sorry to hear about your husband. I thought marriage was a lifelong commitment "for better or worse". Some may not have the strength of character. Unfortunately we weren’t given a choice.
“Must not only cope with their pain, but also with society’s misunderstanding of the disorder. Migraineurs are frequently dismissed as neurotic complainers who are unable to handle stress. The truth is that they frequently battle against great odds in order to hold down jobs and support families…”
I couldn’t agree more. In the work I have now, I’m fortunate to have people who understand. But I have been so misunderstood in my former jobs. I even lost a job because of that. I have about 12-15 migraines a month. Not all debilitating, but some are. Fortunately, I have drugs that help.
Even my family don’t understand when I have to cancel plans. It’s very hard.
Hi Nathalie- this is probably a comment that’s too late after-the-fact, but chronic migraine is actually protected by the Americans with Disabilities Act– which protects people against adverse employment decisions based on migraines. (Can you tell I’m a lawyer? 🙂 ) Basically, they have to make "reasonable accommodations" to help us cope with migraines. Might be worth talking to a lawyer in your area over losing your job (depending on when that happened).
Great suggestion Emily.
It is hard. In fact you’ve reminded of something I need to do. Write a ‘letter’ for family and friends that lays down the facts and what life is with migraine. Thank you for reminding me… I’ll get onto this soon Nathalie.
Another fantastic article!! Will be sure to share the content with my migraine Instagram page and help raise the awareness further. Thanks Carl
Thank you Amy, glad you liked it 🙂
Wow this article gave me a lump in my throat in that it made me feel validated for the chronic migraines I have been suffering for near the past 5 years. I have also suffered from depression off and on in my life since a teen and truly felt that I have caused my migraines from stressing about things and being depressed. I am treated for my depression seperately with a professional. It is true not many truly understand and think I am "always sick" even family members. You do feel some days there is not much future with the way your head aches and body has been effected from constant barrage of migraines that have left me unable to talk properly and trying to shut out pain either with a migraine or the residual effect after a migraine. It makes you forget things and find it hard to concentrate and even carry on a conversation at times. Anyway thanks for the informative article.
Thank you Anne and yes I can relate 100%. I’ve had a migraine from being late to a meeting! uh. I’ve even been asked by work colleagues at lunchtime asking if I wanted to join them for lunch, then as soon I as thought about the work I still needed to do… a migraine began. It’s such a miserable thing, but there are ways through it. I’m much better today than back then. But only others with migraine really "get it".
Hi Carl, great article but I do have a slight problem with the psychology portion. I think you completely miss the point as to why antidepressants are prescribed for migraines. Yes migraines are their own disorder. And not a psychological one. However I suffer from true depression and anxiety, and neither one of those are "in your head" or "mind over matter". It’s offensive to even treat psychological disorders as anything other than a real medical diagnosis like you would diabetes. They is a physiological imbalance within the brain, an organ. An issue involving the neuron and synoptic gap, specifically the intake, production, or release of neurotransmitters. In addition, migraines as a neurological disorder have been thought to involve the same neurotransmitters/synoptic gap as psychological disorders. Some migraine drugs alter the same neurotransmitters as antidepressants. (Ie serotonin, dopamine, and epinephrine within triptans and ergots. Serotonin and dopamine within SSRI antidepressants). This physiological commonality is the reason many Drs prescribe antidepressants to help migraines. Not because they believe stabilizing your mood stops migraines. Furthermore there are a number of studies showing psychological disorders and migraines to be comorbid diseases. So there is something to be questioned about migraines and psychology. An imbalance in our serotonin could be linked to both. At this point it’s something we don’t fully understand, thus we cannot say it IS or ISN’T true.
Thank you
Very fair point. As someone who has personally had depression and anxiety from migraine I know what you mean. Perhaps the wording is misleading. What would you suggest we classify depression and anxiety as that does not belittle the condition? (as I do agree- when I re-read it)
re: treatments. I’m familiar with antidepressants as a migraine prophylactic. The point was when it’s used as part of an incorrect diagnosis is when the danger arises.
I think Anne’s point is that there are many who suffer from both migraines and depression — not depression caused by migraines. I don’t get depressed because I suffer from migraines. I have clinical depression, and I also have migraine disease. The infuriating part is that the treatments that help one often exacerbate the other, at least in my experience. But that doesn’t indicate causality between the two diseases.
I haven’t suffered from discrimination per se. It would be more accurate to say that people don’t always understand the impact or know how to respond when they discover I’m suffering from a migraine. The information you have been sharing to educate us as migraineurs and to the public is a great service. Thank you.
Thank you Pam 🙂
Thanks, Carl, another great article. Fortunately I have very understanding family members (except at times, my children) and co-workers. But, for many years I taught myself to take the medication and keep on going, which I feel has been detrimental.
But, I realized after reading this that underneath I blame myself for not being able to control my stress better. This is partly because I have been working with a psychiatrist for years on my PTSD related to childhood sexual abuse. I frequently feel that if only I could calm down my underlying issue, things would get better. Meanwhile, I am aware that many outside events are causing my attacks, like airplane travel, weather, times when I don’t get enough sleep or regular meals. So, thank you again. Also, since discovering your website and MigrainePal, I have felt more hope than ever before. Tracking has really helped me come face to face with my triggers. I stopped drinking wine a few weeks ago (I have tried this in the past several times and still got as many migraines, so I went back to it). This time, however, it is really helping. Am going to look into biofeedback next. I tired meditation last year and it backfired, giving me flashbacks to my abuse. Must try something else. Again, your website has helped me get more aggressive about doing what I can to help myself. 🙂
Meditation, regular exercise, consistent sleep and supplementation are all complementary options that can really help.
re: meditation, I would suggest a guided meditation where you have someone talking to you and guiding you through it step by step. Meditation helps you control the way you think and might be a path to help recover from the abuse.
I have been diagnosed with migraine with aura. I have few treatment options due to a blood clotting disorder. Taming this beast is impossible at times. I have experienced discrimination. I lost my job, fired because I was unable to work. As far as doctor under education, I feel is the understatement of the century. Migraineurs are far too often expected to keep up with healthy people in society, the pain and suffering are so grossly misunderstood. I am of the rarest of that rare with what I believe to be hemiplegic attacks as well and still I go without proper diagnosis. My migraines are also chronic, I doubt I have 5 days a year that are migraine symptom free. I have been told it is stress caused, anxiety based, been told to take anti depressants, refused treatment, prescribed narcotic painkillers, denied disability, socially isolated and had multiple surgeries that were supposed to help my symptoms but did not… and yet I still fight. I still suffer. I’m not living my life I’m merely surviving it…
Don’t give up Sandi. You are not alone and there is always hope for a brighter future. Take care.
Carl, my migraines started with a concussion from a blow to the head with a dodgeball and then the back of my head hit a steel door facing 7 months ago. I have. Continuing nasty issues with fluorescent lights. I can feel the muscles in the back of my neck tensing up and foggy thinking beginning within 2 minutes after I enter a fluorescently lit place. The ache spreads up and over my head to my hairline. MRF helps but doesn’t prevent it. I am guessing the magnesium helps the muscles relax. I was on Tylenol until a couple of weeks ago and my neurologist wanted me off of that and then a round of prednisone which is helping a great deal. I am then to go on Gabapentin. Can I take MRF with the Gabapentin? I only realized a week ago that the ball hit the spot where I had shingles many years ago. I had neuralgia of the scalp at times after that but I had forgotten about that. I have a tiny very sensitive spot on my scalp as I did with the neuralgia and at that time it felt like my scalp was tender to touch. About the criticism, YES! My employer makes fun of my issues, but my doctors don’t!!! I am trying very hard to get better. I have always been very energetic and very quick thinking. I have a very good brain and I am determined that it will recover completely. I am getting better but it is so slow. I am 73 years old. I stay away from dodge balls these days.
Good on you for playing dodgeball in your 70s! Sorry to hear about the accident though. I’m switching off MRF instead for a better quality supplements where I know the source of ingredients and also for chelated magnesium which is noticeably better (personal experience from testing).
Best to check with the pharmacist or your health care professional for potential risks or contraindications with Gabapentin.
Thank you Carl for this excellent, and objective, article. I recently lost a job offer because I was honest with the employer about having migraines. The employer put a condition on my hiring that I would have to produce a letter from my physician stating that this condition was managed so that it was under control and would not interfere with my work. I could not do this and so lost the job opportunity. I am still unemployed and feel that I can not reveal to potential employers that I suffer from migraines.
Rightly or wrongly, I hid mine for years. But I was also doing many things to keep it under control so attacks weren’t overly disruptive. I don’t judge others for doing the same after seeing others in the workplace discriminated against for migraine.
Yes. It is a very good article. I am Miriam from Colombia with chronic migraine since I was child, with 10 years of remission, now I am 36 with vestibular migraine ( migraine associated vertigo), once we started to treated the vestibular migraine the headache appeared again but now I have a good doctor and good treatment, so I hope to go into a remission soon again, for now I just started with the medicines 2 months ago with migraine with aura. Thanks for the article!
Glad to hear your back on top of it Miriam. Good luck with your new treatment.
Yes and Yes. We have a long way to go. I’m at 25 years of chronic migraines and sadly, i’m certain I know more about that any of the doctors including neurologists I see. I have been told to ‘just relax’, that the nerves in my neck need to be severed, that I’m too angry and that causes my migraines, to ignore the pain, and had one neurologist prescribe an anti-pressant that caused me to hear voices – when I told him he double the dose. And he’s a neurologist. I am now using medical marijuana, Botox with some success and still keep looking. I think that is the secret – keep looking and talking to doctors, try everything as it seems different things work for different people. I feel like people think I’m faking when I keep going until I break but I have to, the alternative it not great. Some times I don’t think I’m going to make to the other side especially after Day 3.
Good luck out there folks.
Thank you for your comment Kelly. Unfortunately it’s all too common. We’ll get there. Eventually. The important thing is not to lose hope. When that is lost, we risk losing everything.
I had Dr Saper at MHNI as my doctor for about a year in the early 90s. He may be renoun for being an ‘expert’ on migraines now, but when I went to see him, it was a different story. I drove 8 hours one-way to see him, took lots of days’ off work and spent lots of money on gas and hotel rooms just to see him. All he did is what other doctors have done in the past – throw medications at me and hope for the best. I have had migraines now for 25 years, have been on over 50 medications that have not worked and have given me serious side effects and countless other treatments and the only thing that I have learned from all this is that medications do not work on me and I have to learn to live with it…
CARL, it is a great informative article!
Hi DJ, the good news is that there are LOTS of complementary and natural options that have been shown to improve migraines. Check out this article for starters: https://migrainepal.com/natural-migraine-treatments/
Great article Carl. Keep them coming.
Will do, thanks Ann.
Thanks for the article. I have suffered from chronic migraine for 15 years. Just had Vestibular Migraine added to my diagnosis. Currently I am having Botox treatment. Incidentally have spent literally years and a significant amount of money trying to get some relief. My symptoms are firstly aura and then pain, however, aura worse than pain. My symptoms are triggered always by lights of all kinds, fluorescent, LED, computers etc incandescent are the only lights I can really tolerate. I have just trialled Stemetil with some relief, however, G.P. wants me on this for a limited time and dosage.
I am well supported in my work place, however, often feel very different because of constant allowances. Such a daily challenge to live a normal life in a world that is surrounded with lights. Always hoping for advances in treatment.
Cathy
Tips for bright lights: tinted lenses (google Axon Optics), hat outside, polarised sunglasses (make sure they are polarised), and manually adjust the brightness on all devices so they don’t reset and set to low or ‘warm’. Also lookup getflux.com – great tool for computer screens.
Ive tried to kill myself twice due to chronic migraines.. And it only gets worse worse … then I was diagnosed with fibromialgia then i had seizures as a result of the intensity of pain yet .. doctors cant find a cure and they think im crazy.. I just want to die I pray for it everyday.. Im tired.. and sad..
Chris PLEASE call an emergency helpline and see a pain counsellor or psychologist that specialists in pain management.
When you have depression you are not yourself. There is always hope and there are better treatments on the way. Migraines are manageable for the vast majority of people – but it can be extremely difficult by yourself without professional help. Take it from someone who has had chronic migraines for 7 years.
Call a helpline and seek professional help. It really can mean the difference between misery and happiness.
Thank you for the excellent article, Carl. I have experienced discrimination, and social stigma because of migraine – it is so misunderstood! People think you can take an aspirin, and be done with it. I belong to a support group of migraine women, and we have shared stories about this topic. I have told the group that in talking of migraines, I wouldn’t ever refer to them as a headache, as therein lies a problem with people thinking it minor. I recommended that they always call them migraines, and not headaches, to help people understand the difference. Just recently, a person I thought was a friend, decided to dump me, and let me know in an email that she considered me a homebody, and she was looking for a more interactive friendship. Another person I thought to be a friend just started not taking calls from me, and couldn’t understand that migraines could interfere with so many activities, and last so many years. I’ve had to explain to family that I couldn’t attend many funerals, because of them being in the mornings. I have nocturnal migraines, that awaken me usually around 5:00 a.m., and even with a triptan can be hard to get out of in even 4 hours, making morning activities very difficult. I’ve learned to get all appointments in the afternoon to be able to go, and not cancel all the time. I have chronic migraine, and working on things to lower the quantity. One thing I’ve done is a bed wedge to raise my head in sleeping, so my head is not experiencing edema while sleeping. I’ve lowered the quantity of migraines since doing this, and hopeful because of it. I, even had trouble at the dentist office, and some doctor offices, where they threaten to charge you if you cancel an appointment, and they want 48 hours notice should you need to cancel. Not knowing when I’ll have a migraine makes this impossible, so I let them know that with migraine, it can’t be done. The dentist tried to tell me that no leeway would be considered, and I let them know that I’d be looking for a new dentist, and my husband would as well. The dentist, then, reconsidered. It’s hard to educate an entire public about migraine, and can be so frustrating, and defeating at the same time.
It’s hard, but educating the public is still something that still needs to be done. We shouldn’t have to do it all on our own. Charities foundations and other institutions can help advocate on our behalf. The hard part for them is getting enough funding so that the message is not drowned out in all the noise.
I have been living with retractable chronic migraines for the past 6 years and has only gotten worse especially having done the reed migraine stimulated I’m running out of options, I smoke cannabis for the nausea and for the pain it does help tremendously but they won’t legalize for migraines. Any advice….
I thought medicinal cannabis was legal in something like 23 states in the US. I suspect it will become national soon. There are signs that it will be like a national patent from the gov’t in a specific technology related to it. For migraine specifically there’s still alot of research to do to find out what strains and formulations best treat chronic migraine. Watch this space.
I have had to quit two of my four jobs due to my migraines. I fought for months before quitting and they helped me stay at work as much as possible, but my co-workers detested me for my "special treatment" and eventually even my superiors were getting visibly disgusted with my frequent absences. It has now been four years since I’ve been able to hold down a job (not ONLY because of migraines… there have been other health issues too, including one prior and one current bout of endometriosis) and as a result starting tomorrow I’m going to start trying to get on disability. I keep thinking I’ll get back on my feet and I’m always knocked backward. I’m finally caving. My parents have been taking care of me outside of Medicaid and food stamps but can’t keep it up much longer. Even they are getting tired of seeing me in tinted glasses all the time, having me in pain, having to watch how much noise they make, sometimes having to drive me places when I don’t feel safe driving myself either because the pain is too much, I’m on too strong of medication, or both, and having to work around three medical diets, one being the wonderful migraine diet. When you can’t feel like being yourself at HOME anymore, even when your dad suffers from them too (just not chronically), you know something has GOT to give. I wish I could try Botox but my neurologist refuses to sign off on it because I still suffer, albeit mildly now, from PTSD. He claims that if you have PTSD you won’t get any help from Botox injections for migraines. At least I FINALLY got off my oral contraceptive (no one bothered to tell me it could cause strokes, though it wasn’t the real reason I got off of it… it just wasn’t working and the pain from the endo was too bad. Now I’m on a patch which is helping a lot more. Two birds with one stone!) My neurologist seems to think that this may help the migraines too if I can get everything steady. So maybe things will get a little calmer now. I hope so.
Like many of us, you’re in a difficult situation. Keep learning and don’t give up Cassie. Better times are ahead.
This is a wonderful site with such informative information. Isolating yourself because you feel that others won’t understand but also because it’s hard to understand why the symptoms come on, is a real stressful thing. Why do migraines affect the vision area of our brain? I’m trying to understand what triggers the symptoms?
It has to do with interrupted blood supply. For example during a visual aura that often proceeds the migraine headache, the blood supply is reduced to part of the brain called the visual cortex which is responsible for vision. Our brain needs blood to work properly. Without enough blood supply, it can malfunction. Hence the migraine aura which causes all kinds of strange and weird visual effects, fields and lights.
For more: https://migrainepal.com/migraine-with-aura/
Thank you! It’s making more sense..
Do you know of scientific articles that specifically talk about why vision is affected on a regular basis. I have Chronic Migraine Associated Vertigo and one of the scariest symptoms besides dizziness if the blurred vision that comes on out of no where. I wondered why flourescent lighting is such a trigger? I had a speaker go off by my ear in 2011 and have had dizziness ear pressure tinnitus and blurred vision since then. My biggest trigger seems to be lighting and I believe hormones and certain foods. I work at a college and had to retire early because it was too hard to be under the lights, move around and drive to work. I had too many attacks and didn’t know where they came from until diagnosed. I’ve recently have had a disabilitiy case going with the state of New York and the state doctor they sent me to can’t understand my visual complaints. He is a neurologist and feels that chronic migraine without headaches is so rare and that I’m probably embelishing. I loved my job and never wanted to be in this position. They also sent me to an eye doctor who believe my diagnosis given by my doctor at NYU however since on the day of my visit to the eye doctor my vision was ok enough to read the charts etc, he could not say I was visually disabled from an eye standpoint. I’m in a position of trying to prove my case. My doctor wrote a letter and sent an article with varying symptoms that provoke it, however, I feel I need to submit something specific for vision. I would like to understand it for myself as well. Any direction you could point me in would be so helpful.
Dr Alexander Mauskop is a migraine specialist in NY who I can unreservedly recommend as someone who understands migraine, auras such as vision and balance (without headache) and other migraine variants such as vestibular migraine.
Hi Carl,
Thanks for getting this article together but I can’t read it well. Is there anyway to make this article easier to read? I think it will be a great article for my files and one to show to my doctors but the print barely shows up. This is not a good color for myself who has chronic migraines and trouble reading off screens. Can you please make a copy with dark black typing? That would be very helpful. I only can read bits and pieces.
The quickest option for you would be to Select All, then copy and paste into word and adjust the color, font and size etc.
Nikki you do raise a good point as I myself am light sensitive and am looking at new design options to make it easier for others like us.
Are you kidding me? Unless someone gets migraines or loves someone who gets migraines, it is way too common for someone to minimize others’ migraine experiences. Even people who get migraines judge other people migraines sometimes. For instance, one of my friends gets about one a year and she sleeps it off and it goes away. Then there is me and my friend who have frequent migraines and migraines that last for days and she blames us taking preventatives for making ours worse. I don’t even try to explain anymore. I just tell her to count her blessings.
Great point you raise Amy. Many people with migraine don’t actually get it all that often. It may not be nearly as severe either. Migraine has a huge spectrum of disability that can keep people bedridden each day all the way to those who have only mild symptoms and infrequent symptoms. It’s important we recognise that for the reasons you mentioned.
My husband’s first family doctor just kept asking him if he could get his opioid doses down as he was more worried about coming under the scrutiny of his College than to validate and alleviate the suffering his patient was undergoing. At no point during their 12-year relationship has his doctor ever said to him "You have a neurological disease." He just saw my husband as a chronic pain patient hooked on opioids. The crazy thing was… we were both family doctors and my husband was his Department Chief!
Oh wow!
Even when a doctor is treating their boss, they still can fall below what many would consider a minimal standard of care.
I must, must, must find a migraine specialist in OK! Please – if anyone has good experience with one anywhere in my state, please share. The one I used for 20 yrs moved out of state, 2 yrs ago. I’m in serious need. Chronic migraine for decades. Thank you. Much appreciated.
Try looking up the National Headache Foundations’ headache doctor directory., you might find someone near you.
I am a chronic migrainuere and have been for some fifteen years now out of the forty I’ve suffered episodic migraine. After trying virtually everything the only thing that still works is opiates, and I consider myself quite fortunate that they do despite my mother being convinced I’m addicted and need treatment even though I have no other recourse for treatment (she doesn’t take so much as an aspirin!). How do I impress upon her that this medicine is saving my life and without it I frankly don’t know if I’d still be here due to the crazy pain and devastation I feel without it?
Take her to your next appointment with your doctor and get them to explain the situation. If she still doesn’t get it or want to go with you… then it’s none of her business if she refuses to get the facts from a qualified professional versus what she thinks.
My partner was given a dissaplinery because he took time off to look after our 2 children both under the age of 2 as i was unable due to having a migraine id also lost my dad to cancer and dound out my mum was also battling cancer a few days after dad died. He had to take time off as i was having alot more attacks than normal. When attack happens i lose the feeling in my right side face and arms i can feel the numbness traveling up my arm to my face speeh impaired flashing lights in eyes and sometimes i go blind in right eye then the headache starts making me throw up in so much pain its untrue. However if i take narameg when it first starts it knocks me out and the migraine passes for a while. All in all it takes about a wk to recover well to feel normal if thats possible so therefore i am unable to look after myself let alone my kids
Those symptoms are all too common. It’s hard. With that kind of emotional stress in your life it is difficult to control your condition. How your partner manages his work around your illness is between him and work. But if I was reprimanded for having to fill in for my sick wife I’d be having serious thoughts about whether I’m working with the right people.
You can’t do this alone. Grandparents or other family members may also be able to help with the kids and certain responsibilities.
I’m a doctor and colleagues at work have laughed off my migraine once when it was so hard I couldn’t keep my eyes open. There were tears flowing from my eyes because of the pain and nausea and overall discomfort. "Just take a Paracetamol and get over it". I just collapsed on the first bed I saw in an empty room and stayed there for like 3 hours. I was just lucky no patient needed me during that time.
It’s disappointing that even doctors are belittled by other doctors for this.
It is a damning reflection of their lack of empathy, medical training and understanding of the 6th most disabling disease according to the WHO.
After working in a psychiatry ward for the past 3 months, I’ve come to the conclusion that migraneurs face the same discrimination as mental patients. Some people just don’t seem to get it that we don’t choose to have a migraine and we can’t just "not think about it so it’ll go away". And it’s about lack of awareness and the stigma associated with both of these.
You’re right. The lack of awareness and stigma can have a terrible impact on us. This is something that a few migraine foundations and institutions are trying to change… but they need all the help they can get.
I have been blamed for ruining special events because of my migraines. I have been treated as a drug seeker in the ER because I know what will help me and I know what doesn’t work and I don’t want medications pumped into my body if they are not going to work. I apologize continuously for my migraines and have to explain they are not headaches. Then the best is the insurance company that will allow me an unlimited amount of narcotics which are addictive and dangerous but will only give me 9 Imitrex pills a month which has no long term adverse reactions, they are non addictive and have no side effects for me and they take the migraine away within an hour. Would they limit an epileptics medications? My own children fight with the ER to help me. It’s frightening and such a hopeless feeling
It sounds like your insurance company has an inconsistent policy when it comes to protecting their patients from medication overuse headaches (https://migrainepal.com/rebound-headache/).
If you’re having more attacks than what you’re permitted to treat via Imitrex then its worth considering preventative migraine treatments & strategies as well as having alternative acute treatment options when you run out.
I’ve suffered migraines since I wAs 4 yrs old I’m now on disability cause of them have tried everything under the sun I now see a pain Dr an a neorologist
It sounds like you’re getting good support. Hopefully you get positive results from your doctors.
This is so very true.the stigma of its all in your head, is the most painful of all..the discrimination…
Taking care of young children..isn’t easy when you’ve got chronic migraine sleep deprivation is my most strong trigger n its very easy to be sleep deprived with young children..
No treatment till yet successful ,just a few days of magical effects of a new medicine and then I am immune to it
I have the same challenge. Sleep is my no.1 factor. I don’t have kids… but some day hope to.
Couldn’t find the comments section in vestibular migraine article so commenting in this section
I think I have been experiencing vm since childhood n well these days used t come when things dropped from my hands,experienced balance problems All n all effecting my personality my confidence ,nobody understood n till day nobody does.. I still suffer from this during migraine attacks …I am 35 yrs n have migraine since I was 3yrs(as my mother recalls) but here the doctors didn’t recognize my pain just dismissed it with the statement that children don’t have headaches!
Now my 9yr old boy is having phases of this n they are usualy without headache, he does experience headaches also has a history of fits,also experience some vision problems which I am unable to evaluate ( I hav aura )..
Any research in vm would be very helpful n highly appreciated
Your blog is helping me alot in managing my migraine..
But this means that I tak naproxen sodium 7 days a wk n sometimes topped with diclofenac potassium..
Vestibular migraine can be very debilitating. I’m sorry to hear about you and your son’s condition. Here’s the truth. If your doctors’ told you children can’t have migraine then they are wrong. Plain and simple. Tell them to look up the diagnostic criteria for migraine as set out by the International Headache Society’s International Classification of Headache Disorders.
There are a few, not many, headache specialists that focus on pediatrics… You could call a few headache centers or the American Headache Society and ask for some suggestions.
Regarding yourself, if you are taking Naproxen 6 times a week for more than 3 months, then you are putting yourself at risk of medication overuse headaches which can lead to daily migraines (including vertigo). That can worsen your situation dramatically. You can learn how much is too much here: https://migrainepal.com/rebound-headache/
Thanks read your article on moh n I think I already have it, m also getting very sensitive to noise,1 bang of the door n I get a debilitating migraine..when naproxen dosnt help..anything won’t help, my younger daughter got diagnosed with migraine at age 3,with me insisting all doctors that it is migraine as I myself had migraine since the same age..praise to god that she got treated with a drug for pediatric patients named mosegar in.my country, m not in usa or other better facilitated countries..I hav suffered my whole life cuz of migraine with no 1 realizing it as a disease.
Your blog makes a lot of sense to me n its very informative
As to my son’s condition he is not experiencing vomits but has nausea
I don’t know if calling headache center in America will help me as m not in usa
If you have M.O.H. then you need to work with a specialist. MOH often needs to become the primary focus to see any progress on the underlying migraine condition. There are Headache Society’s or Neurology associations or Migraine foundations in most English speaking countries. You definitely need someone with a keen interest or expertise in headache who is familiar with MOH. Please take care Flower.
Hopefully will go to a neurology center…
Relaying greatly on your blog still..n e research in vm would be highly appreciated.
Thanks a lot for such a great blog n hard work
Hi Flower, thank you for your warm feedback. Good luck at the neurology center. I’ve written about VM here: https://migrainepal.com/vestibular-migraine/
I am glad I have found your site and getting your articles the first time I read it you can tell it was somebody with knowledge but also experiences migraines and fully understands a chronic migraine sufferer completely diet to be triggers 85% of sufferers are women so they are hormonal related to just PMS and yes it’s something that we do have to live with but we have to manage and it’s nice to have people around us that understand how much we suffer and how much Society has no clue what we deal with
You’re right Michelle, it is very difficult for someone to understand unless they have experienced it themselves.
I have migraines that will last weeks. I went to one doctor for help and he accused me of just waiting narcotics and told me to take Tylenol . Needless to say I stopped seeing him.
Finding a doctor who listens, understands and is willing to work with you is really important.
Yes I have suffered greatly in relationships, mostly family, who are sick of hearing about migraine to the point I’ve been asked to stop talking about them.. I’ve been told by family that I need psychological help because I’m too type A and it’s all in my head.. That part is right, it is all my head I know NOBODY who wants to learn about this dreadful disease. I’ve been chronic for over 15 years now, migraines for 40 years. Janet
Thank you for sharing Janet. It is very difficult.
Family members can often be very difficult to deal with and if they don’t experience it themselves, they simply don’t understand.
HRT can also cause migraine, as can just being pregnant. I suffered daily migraine with aura for the first three months of all three of my pregnancies. When my mother, a migraine sufferer, had a massive stroke at the age of 64 I did a private survey of about 100 stroke sufferers – a great many had had migraine at some time or another. Some severe, others not so bad. I wrote to a medical magazine only to be told that there was absolutely no connection between migraine and strokes. I did not believe it then and have always been certain in my own mind that there is a connection. Aura, numbness down one side, trouble getting words out, and so on. There was certainly discrimination at work when I was younger, nearly losing my job on several occasions.
My two sons have migraines but not my daughter. My grandson has very severe migraine and has done so since an early age.
Very interesting Carol. It’s unfortunate how stubbornly rigid the medical community can be until they see overwhelming evidence to the contrary.
There is certainly a genetic link between migraine but it’s not the only piece of the puzzle. Environmental factors can play a very significant role. You might find this article interesting and the first comment from Wil with your grandson in mind: https://migrainepal.com/microbiome-gut-brain-axis/
Hi Carl,
Great article; very informative.
I have suffered from migraines for most of my life (started at 14 years old, now 61), and have been battling the misunderstanding of those around me which still goes on today. At times, it is very depressing and I totally appreciate you starting this blog. Just knowing that there are people out there that do understand (although unfortunately for them, they also suffer greatly), helps me to cope. I still get these comments "well, if you’d relax, you wouldn’t get migraines" or "oh, so you have a headache" or they flat out don’t believe me when I start to lose my vision and can’t even get words out of my mouth. I’ve been going to doctors most of my life and am still unable to control this situation. Now the migraines are vestibular, lose balance (like vertigo), eyesight blurry, etc…… I hope to have a few good days before I leave this world.
Don’t lose hope Diane, I’ll give you 2 reasons:
1) there is a pretty exciting pipeline of new treatments that will be available within 18 months. Some as soon as 6 months within the US which we haven’t had access to before.
2) We’ve had a world renound headache expert speak about the topic of Vestibular Migraine for the 2017 Migraine World Summit…. I can’t say too much more at this point, but you’ll want to catch this talk.
Getting a few good days is very realistic for the vast majority of us.
I’ve also had to quit a good job (well paying) because of health issues. I can only work part-time now and am struggling to make ends meet.
Hold onto to hope Diane. It is incredibly powerful even when you see little cause for it.
(see above note)
And it really irks me that some in ER Services have no clue as to how to deal with my chronic migraines. I’ve had my fair share tell me to go home and take my nausea meds b/c they don’t want to commit themselves to helping me out. And then there’s a neuro who swears that with my not being able to do pain management he’s stumped as to what to do.
This is actually quite common. Hospital staff aren’t generally certified headache experts and don’t necessarily understand how to treat or sometimes even properly diagnose migraine.
Some staff may remain skeptical of things they don’t understand.
The key is avoid the ER altogether.
ERs have terrible bright lights, other sick people, uncomfortable chairs and can be extremely expensive, particularly in the USA.
If you a prone to severe, disabling migraine attacks or status migraine which last longer than 72 hours despite treatment, then you really need to be working with a dedicated specialist to develop an emergency plan and treatment strategy for these particularly difficult occasions.
I hope that helps BJ.
I now don’t tell anyone if I feel a migraine coming on, I simply just wait for them to see how distorted my eyes and face can actually look and have them say to me "are you feeling OK, you really don’t look well? then I can say to them that a migraine is coming on. It often freaks them out that your look can often change and distort so badly.
cheers Nat
My partner can tell sometimes before me. The color drains from my face. I tend to go pale before even the aura begins.
For a period of time I would also feel amazing right before an attack. Like I had a surge in dopamine. Every time I felt great I became suspicious it was an incoming attack. So, I avoided feeling happy. A lose, lose situation.
There weren’t any easy answers and change came about slowly.
Thank you for sharing Nat.
Thank you Carl for this information. Im glad I stumbled upon this. Looking forward to learning more.
Karla
Glad it helped Karla 🙂
Yes, I once had a girl at work say to me "you better not be like this tomorrow", I was on day 3 of migraine. She soon backed down when I told her there was no set time for a migraine and I had no control over the severity and had previously had one for 3 weeks causing me to collapse and need medication injected by the doctor.
People are so ignorant, it’s not even a case of they don’t know, for most it’s a case of they don’t want to know and don’t care.
Sad but true Sandie. Most people spend the last third of their life with chronic illness. Perhaps then they will understand. By then perhaps we will be well adjusted to a life of chronic disease or better yet, cured 🙂
I have yet to find a maintenance med that works for me… my first migraine was about 25 years ago…it’s been chronic approx 5 years…any info on upcoming events would be welcomed..like many, I live right and do my very best to live the fullest joyous life against some odds
MIA, speaking of events, the Migraine World Summit is coming up soon where 36 experts, doctors and specialists discuss migraine on online broadcasts during April 23 – 29. For more info visit http://www.migraineworldsummit.com
My migraines are seem to be weather related. Chinooks on Alberta are causes of discomfort. Ideas
Hi Kathy, weather can be common factor for some people who are sensitive or who live in extreme weather locations. I’ve found as my condition is better managed over the years that weather exerts less of an influence over my attacks.
But when I’m vulnerable, weather itself can be the trigger that leads to an attack.
I’ve had numerous patients informed by authoritarian figures that the person had a "migraine personality profile". Causing helplessness in the patient. Shameful and baseless act on the part of the Doctor. Dr Finn
I couldn’t agree more.
There is no such thing as a migraine personality profile. Research studies have been conducted and proved this.
Thank you for sharing Dr Finn.
Carl
I wish I could have. handed this article to a very unforgiving nurse manager. She refused to work with me or have the least understanding about my condition and darn near rairoaded a then 38 year career in nursing. I am retired now and no my migraines are not any better, but at least I don’t live in dread of losing my job over them
I’m sorry to hear about that Diane. It’s unfortunately all too common and something which I also felt anxious about. I hope this provides some measure of comfort.
I have been fired from jobs and also deemed unhireable for certain types of jobs.
Usually reason for not being hired for a job is you have to many "headaches" that you seem unable to control or work while having them.
Pretty much the same reason for losing a job.
I have been told by employers that I need to learn how to work effectively during a headache as well as learn to control the headaches.
What they have all told me when trying to explain a migraine is " I know it is just a bad headache"
Thank you for helping to educate people that a migraine is more than a "bad headache".
I’m sorry you’ve had to put up with such poor behavior from employers. It’s frustrating and very difficult at times. But we can all help educate and little by little spark change.
I have had migraines since the age of 8. At that age I had visual auras for 30 minutes followed by headache and then nausea and sometimes vomiting. They were about once a week. I am now 67 and very rarely get them. The difference now is that I only get the aura, not the headache. I don’t know why this is. But today I have had 4 within 10 hours and I’m wondering if this means something. I have never taken any meds for this. I had a stroke a little over 2 years ago that originated in my brain stem. I’m really concerned that today’s auras mean another stroke is coming. What do you think?
Joyce, I’ve had not seen any correlation in the research about the frequency of auras and stroke. It is more common in older age to have aura without the head pain. It kind of burns out for some people over time. But aura itself even without head pain is still migraine so you still need to manage your triggers, lifestyle and behaviors. Even take medications to prevent them if they are sufficiently disabling or disruptive.