Migraine does not do well at the National Institutes of Health (NIH) and that’s a surprise. Migraine has been recognized as a disease for hundreds of years. It has a basketful of drugs approved for it. It’s a prevalent, well-known disease and the economic losses it produces are huge.
Despite the many factors going for it, migraine, however, is essentially in the same boat as chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM). In fact, in some ways it’s worse off. Migraine effects about 35 million people in the United States. While it receives about double the funding of FM and quadruple the funding of ME/CFS ($21 million/year), it receives considerably less funding per patient – a mere 70 cents – than either.
If the NIH can neglect a disease like migraine it can easily do so to chronic fatigue syndrome and fibromyalgia. Joanna Kempner’s “Not Tonight: Migraine and the Politics of Gender” examines the struggle migraine has faced in legitimizing itself and achieving parity with other diseases. By trying to understand what the heck went wrong with migraine I hoped to understand the issues ME/CFS and FM face. I also hoped to find ways ME/CFS and FM can avoid going down migraines path.
The Problem in a Nutshell
The book starts out with a passage from Ulysses S. Grant’s biography reporting how Grant’s migraine instantly vanished hearing of Lee’s surrender. In that passage lies the problem.
Throughout the years the conception of migraine has fluctuated back and forth between two poles – a psychological/stress-based one and a biologically based one. Eighteenth century doctors believed migraine was physical, but also asserted that the”passions of the mind” needed to be kept under control, and that “mental irritation” made the disease worse.
Nineteenth century doctors coupled their recognition that migraine was a blood vessel disease with the idea that it generally happened to people with a “nervous temperament.” Migraine effected women more because their “fine nerves” and more “excitable” brain left them more susceptible.
Modern medicine continued the trend. Harold Wolfe (1898-1962) irrevocably demonstrated that the pulsing pain of migraines reflected the pulsations of the blood traveling through the blood vessels in the brain and that migraine was a vascular disorder.
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Wolfe also, however, codified the idea of a distinctive “migraine personality” that would overshadow the field for decades. Wolfe’s flawed studies, which later were shown to be confounded by selection bias, asserted that people with migraines were successful, ambitious perfectionists. Male migrainuer’s self-inflicted crushing pace of work first lead to frustration, resentment, anxiety — then prostrating fatigue – and ultimately a migraine. Wolfe, a migraineur himself, couldn’t have described himself better.
Women migraineurs, on the other hand, had to have their houses “just so”. Any deviation from perfect orderliness was a possible trigger for a migraine. Wolfe also asserted women migraineur’s were rarely able to attain orgasm and used migraines as an excuse not to have sex.
Migraine, Wolfe asserted, was a stress based disorder. Tension caused vasconstriction of the blood vessels reducing blood flows and causing fatigue. When the migraineur finally collapsed from fatigue, their blood vessels dilated – causing the migraine – and forced the migraine patient to withdraw from their source of stress – work. A migraine was thought to be a protective reaction.
By the 1960’s migraine was largely thought of as a psychosomatic disease caused by migraine patients inability to adjust to life’s challenges. One authority even argued that migraineurs who failed to respond to medications were filled with intense, even homicidal rage.
Just about every aspect of the so-called migraine personality was ultimately shown to be wrong. People who get migraines are not frustrated perfectionists or angry people and women don’t use migraines to avoid sex. (A survey later found that women with migraines actually often used sex to reduce their migraines.) Why then was the “migraine personality” so readily accepted?
One reason was because almost anyone could patch some aspect of the “migraine personality” onto their lives. Joan Didion, for instance, ignored her perennially messy house – something a person with a migraine personality would never allow – and emphasized her dedication to her work when she acknowledged that she fit the migraine personality type.
Biology Asserts Itself
The death of the psychosomatic/vascular conception of migraine began when a serotonin regulator called methysergide was found to be effective in the 1960’s. Before methysergide migraine could be conceived as a vascular disease affected by stress. After methysergide it was clear migraine was much more than that.
The migraine personality idea continued, on however, for decades with migraine textbooks asserting as late as 2001 that Type A behaviors in migraineurs needed to be addressed. Indeed, after her years of getting psychosomatic explanations at her doctor’s offices, Joanna Kempner, the author of “Not Tonight”, expected psychology would be the focus of the first migraine scientific conference she attended in 2000. Instead, she found presentation after presentation on the brain.
It’s now clear that migraine is a physiological disease which can indeed be exacerbated by stress. Kempner reports that researchers now agree that migraine is a “somatic disease rooted in the brain”; i.e. a disorder with an organic basis. Physiologically, migraine is considered a complex “neurovascular disorder”; i.e. a neurological and vascular disorder involving the trigeminal nervous system. Serotonin is involved as are other elements.
That’s a big change from thirty years or so ago when migraine was almost exclusively believed to be a psychological/somatic disorder. It was a change the migraine community realized needed to happen and pushed for.
Because migraine research studies were often dismissed with the question”How do you know you were really studying migraine?”, one of the first steps the migraine community took was the development of validated diagnostic entities. In 1988 the first International Classification of Headache Disorders document was produced,
The fact that the authors of the IOM and P2P reports felt the need to reiterate again and again that chronic fatigue syndrome is a disease, indicates the lack of diagnostic certainty is a major problem for ME/CFS. Until a statistically derived research definition is produced (the IOM definition is a clinical not research definition), the ME/CFS field will be devalued and undercut by a question the migraine community solved in the late 1980’s.
The migraine definition, which was revised in 2004 to differentiate many more types of migraine, did more than just standardize migraine research efforts. It also cleared up another issue ME/CFS and FM struggle with in the medical community. It indicated that when depression and anxiety are present, they are comorbid features of migraine – not the causes of it.
Research findings – usually driven by technological advances – that uncovered more and more physiological bases of migraine, continued to emphasize the role biology plays in migraine. MRI’s indicated that excitation of the cortex in the brain plays a key role in the disease. PET scans suggested that a migraine “generator” or initiator is present in the brainstem. Genetic studies uncovered polymorphisms that increase the risk of having a migraine.
Kempner asserts, however, that the most significant factor driving the transformation of migraine from a psychosomatic disorder to physiological entity, however, was the development of another serotonin targeting drug called Imitrex (sumatriptan). Imitrex targeted serotonin receptors in a more specific fashion than methysergide. Its greater efficacy and fewer side effects resulted in its becoming the first blockbuster drug for migraine. Imitrex’s success prompted big pharma to jump into the mix. Since Imitrex, five more serotonin affecting drugs have been produced.
Some members of the migraine community believe that the intense desire to legitimize migraine by emphasizing its biological aspects has gone too far. They assert that while migraine is a physiological disorder, external factors like stress, diet, etc. clearly play a role in triggering migraines and that it’s easier at this point to effect those factors than to chemically alter what’s happening in the brain.
Migraine’s long history, however, of being dismissed as a psychological disorder, however, has made many leery of allowing any hint of psychology into the research arena. The female predominance in migraine and the tendency in the medical profession to interpret female dominated disorders psychologically, undoubtedly contributes to this fear.
The Symptom Issue
“Headache is the Rodney Dangerfield of medical maladies: it gets no respect”
Despite considerable biological evidence, the creation of standardized diagnostic protocols and the now many drugs created for it, Kempner argues that migraine still continues to suffer from a “legitimacy deficit”. That legitimacy deficit is reflected in migraine’s poor NIH funding, the poor reception migraine patients continue to get at many doctor’s offices, the few migraine and headache specialists produced by the medical profession, and it’s conflation with headache in the public’s and the medical communities minds.
Kempner argues that migraine’s “legitimacy deficit” arises from a number of factors, the foremost of which is a symptom problem: the inability of “headache” to be taken seriously by the medical profession.
Migraine is a form of headache – an extreme form of headache to be sure – but still a form of “headache” – a symptom which non-migraine sufferers tend to treat rather casually. Even though it’s now clear that some types of non-migraine headaches can be paralyzingly painful and cause distress far in excess what a healthy person would call a “headache”, in general headache is still given little respect.
Migraine may cause one’s head to ache (or pound or feel like it’s exploding) but it is not just a headache. The only thing migraine shares with a typical headache is that it causes pain in the head. Migraine, like ME/CFS and FM is associated with many other symptoms including visual disturbances, nausea, fatigue and weakness.
The same, of course, is true with the “fatigue” in chronic fatigue syndrome and the pain in fibromyalgia. Fatigue hardly begins to describe the weakness and exhaustion present in many people with ME/CFS. Likewise the pain in fibromyalgia is little understood by the public. Despite the fact that pain accounts for a high percentage of doctors visits, only recently did the NIH begin to track funding for pain research.
The centrality of post-exertional malaise in the IOM’s new definition of ME/CFS and role it’s given in the IOM’s proposed name, can be seen not just as a more accurate reading of the disease but as an attempt to recontextualize it – to move it from a fatigue-based disorder to an exertion-based one.
The Migraine Personality Returns
Kempner argues that effects of migraine allow it to continue to be interpreted in a psychological manner. The migraine personality as a explicit psychological construct may be dead but it lives on, she asserts, in a more muted and insidious fashion because the disease itself produces outcomes that produce a pull towards psychology. Migraine, like ME/CFS and FM is simply hard for people to get without the idea of psychology creeping in.
This is because migraines, ME/CFS and FM produce behaviors that are hard to understand. (Migraine is common in ME/CFS and FM). Innocuous stimuli like bright lights, foods, smells or small disturbances or activities can wreak havoc. A light touch can cause pain. The ‘migraine brain’ is described as a hyperactive, highly sensitive, diva-like organ which can throw a hissy fit at just about anything.
Migraineur’s, like people with ME/CFS, are often encouraged to adopt regular activity patterns, avoid stress, certain foods, certain environments, etc. In ME/CFS and FM the hypersensitivity can extend to environmental factors such as low levels of chemicals, mold and electromagnetic radiation. The water must be pure, the food must be organic, the windows need to be darked out, the schedule needs to be adhered to, the eye shades need to be on, the room must be the right temperature, etc.
Chemical sensitivities, for instance, prevent me from being able to sleep in most houses. I wasn’t prepared, however, for not being able to sleep outside of a house, but that’s what happened recently. It was only when my symptoms stopped after the construction was complete on another house across the street and down the way, that I realized that chemicals emanating from that new house was the cause. That type of overt sensitivity is not something most people even with fibromyalgia and chronic fatigue syndrome can understand.
Barriers to Medical Care
Despite the fact that headache/migraine is one of the most common reasons to see a doctor, medical students get little training in treating either headache or migraine. Just as many rheumatologists prefer not to treat people with fibromyalgia, many neurologists prefer not to treat difficult headache/migraine patients. Few join professional headache/migraine societies.
Because migraine and headache can be time-consuming to treat, being a headache/migraine specialist is believed not to be financially lucrative. Headache/migraine patients are considered difficult patients with psychological issues that primary care doctors and neurologists don’t want to deal with. This leaves headache specialists in great demand and rare.
Migraine researchers view the high sensitivity to external stimuli in migraine as the result of a sensory system gone berserk. Studies, in fact, indicate that migraineur’s brains exist in a state of “cortical hyperexcitability” – ready to over react to any change in the environment.
The effects of that hyperexcitability, however, can be easily interpreted in a psychological fashion. The recontextualization of a migraineur from being an overly sensitive, high maintenance type of person to a person with a overly sensitive nervous system is far from complete. That is the work, though, that Kempner argues must be done for migraine to achieve full legitimacy.
With the low funding levels they receive, migraine, ME/CFS and FM are in the same general boat at the NIH and share some commonalities. All are “invisible diseases’ affecting more women than men which are susceptible to being treated psychologically. Neither the medical research establishment or doctors have embraced either. All are considered financial losers for medical practitioners. Research funding is low relative to the impact the diseases have and expert doctors are hard to find.
They differ in some important ways as well. Migraine is readily accepted as a disease and has stable diagnostic criteria. Neither can be said for FM and ME/CFS.
Migraine has had a long, long history of being interpreted as a psychosomatic disorder. Because FM and ME/CFS are newer diseases they carry less long term baggage, but because they are newer disease entities their very existence can be questioned.
In the end, two key factors driving the de-legitimization of all three disorders may be that they are associated with symptoms that many consider mild and they produce behaviors that are prone to being interpreted as psychological. These issues can be countered in several ways. The seriousness and the burden of illness these diseases impose on society can be emphasized and re-contextualizing these disorders on the basis of their biology is essential.
An hyperexcitable brain is proposed to cause the symptoms of migraine. A similar situation – central sensitization – produces the symptoms found in fibromyalgia. Microglial activation – another form of hyperexcitability – may be present in ME/CFS. New technological advances will surely help drive the legitimization of all three diseases.
Migraine’s long and thus far unsuccessful fight to achieve parity with other illnesses suggests a long road may be ahead for FM and ME/CFS if they follow migraine’s path. Some new developments however, could shorten the path to parity.
Next up – More reasons migraine has failed to achieve parity and how ME/CFS and FM can take a different path in ME/CFS, Fibromyalgia and Migraine Pt. II
Health Rising Inquiry of the Day – Do You Suffer From Migraine? Migraines are common in ME/CFS and FM and you may have one without knowing it. Find out more and take the poll here.
Great article, Cort. So much our community can draw upon. One thing with language though. Referring to the heightened response to sense stimuli healthy people would find innocuous but the brains of migraine sufferers respond to with a “hissy fit,” reinforces the anti-feminist rhetoric you do call out.
But Cort, it’s not you at fault here, it’s our language itself. I propose a counter term that could be used for a few hundred years to balance out the gender dis: testosteroneous.
I would be so pleased if others picked up and used this term, and hope that some day the OED will trace it back to me.
🙂 Well said and good point.
I hope you get in the OED 🙂
I should have used my word in a sentence. Here goes:
The long-held assumption that migraine was psychosomatic proved to be testosteroneous.
So your idea to do deal with prejudice is create another prejudice?
No, it was to inject some humor.
can I tell you that migraines are what led me to a diagnosis. I hardly ever had headaches, in fact hardly took aspirin and when i did it was one at a time and rare. Then in 1999 I started to get more and more headaches, which meant more aspirin but at a low dose. I chalk it up to stress at work, which it was in a great part. By 2006/7 I started getting severe migraines (I was also dealing with cyclical illnesses that debilitated me for weeks on end, bronchitis, stomach issues, etc.). As time went on these headaches would last days, then weeks and then months and finally constant. It went from low level to extreme. I had clicking sounds in my right ear, and dizziness along the way too. I went to a “headache” specialist who did NOT believe in CFS whatsoever! I surmised I may have it due to the low energy, fatigue and length of illnesses I experienced before the headaches even started. After almost 2 years of dealing with this arrogant doctor (by this time 2009, I was on disability from work short term, which eventually went into LTD and ended with full fledge disability still today). I tired every drug and method (outside of Botox) he recommended. The drugs made me feel worse. I went for acupuncture treatment which did help with the dizziness.
One day, as I was researching headaches, on a day my brain wasn’t do foggy. I found the CDC list of what symptoms are found in CFS. (I had also been to a psychiatrist as I fell into a deep depression over the lack of support from doctors and a diagnosis, he was actually the first person to say YOU HAVE CFS!). Anyway, I brought the list to Dr. arrogant who discounted it. Until I stomped on him and said, WAKE UP!!! it says sudden and debilitating headaches and I’ve had a good doctor recognize it. Needless to say, I found a soctor who specializes in working with CFS and he took 17 vials of blood. Turned out I have all 3 strains of Epstein Barr, 2 which are still active. The headaches are less frequent. I find changing seasons bring them on and when i get them, they last weeks at a time still. But i think the reduced stress (from not working) has made them manageable. If now I could get over the extreme fatigue, nerve and body pain.
This is a condensed story, but migrains DO go hand in hand with CFS in my case.
Another amazing story! Thanks for passing it on…
There is a huge overlap between migraine/ ME/CFS and FM – in fact, some studies suggest migraine may be the most common comorbid disorder in ME/CFS. That’s kind of a mind-blower for me. The post migraine period, however, looks very much like ME/CFS….Of course there’s a big overlap in stimuli problems in FM, ME/CFS and migraine.
Just wanted to add that the post migraine period is much like ME/CFS. Even though the pain has subsided, I feel like I have been run over by a truck. I am usually a zombie then — hard to think and terrible memory.
I find that I need a lot of quiet to “reset” my brain and body even when I am not having a headache. Often have no music or tv on. When I leave home, my body can only handle so much stimulation. When I reach the limit I crash, which may be a severe fatigue, pain, can’t think or a migraine. Or all of that. 🙁
I can truly relate to the crash you describe. And let me add, that I’ve had migraines without headache, exact same symptoms without the pain in the head. There is so much that the general public doesn’t understand about migraines, unless they’ve truly experienced them.
Also, my dad suffered from severe headaches for years, I can remember rubbing his temples and bridge of his nose for him as young as 3 years old. He taught me to do it for him. It wasn’t until I became so ill that I found out that my cousin, from my father’s brother, suffered from them as bad as I did. So there is also a genetic aspect to it as well. Why it took so long for it to manifest in me I don’t know, but it could’ve been affecting me in other areas and no one really understood it back in the 60’s and 70’s
Interesting, my first symptom was migraines. That was in 1993. Then came gradual onset of body pains, and in 1997 I was diagnosed with FM. Severe fatigue/PEM set in along with cognitive problems. I finally ended up with a good doctor (David Bell) who diagnosed me with CFS and POTS in 2001 – eight years since my first migraine. After two medical leaves and reducing my hours to quarter time, I was forced to stop working in 2000 and have not been well enough to work since then. I too found that leaving work reduced my stress level somewhat.
Yes, it has always been considered to be a “wailing women’s headache” and for decades it was the “kiss of death” to walk into a physician office and admit you have migraine. Actually, it was probably wise to never do that unless you disliked your physician anyway. Things are slightly better now.
A couple of things–there is no such thing as “migraines.” If you get a headache with migraine, it is just one of the symptoms, depending on the variant you have. One form is migraine without headache. Also, it is not possible to do clinical trials on some of the variants due to finding enough subjects. Hemiplegic Migraine, whether familial or sporadic, occurs in about 3 out of 10,000 people. Basilar Artery migraine is equally rare.
Think of the flu–most get a flu headache, but the flu is a collection of symptoms (a syndrome), most of which people get with the flu. Migraine is like that. The term should be migraine syndrome, though no one uses that.
I have complained about this for some time to my colleagues and friends. Migraine is a serious paroxysmal neurological disorder. It is possible to keep oneself from getting many attacks, but not possible to completely outrun it. If one has a migraine diathesis, then one WILL get migraine. Also, all headaches should be diagnosed. Many other types can be severe, like migraine but not be it.
There is an excellent migraine neurologist in Fresno. She is worth the trip since she has severe migraine syndrome herself. Dr. Ernestina Saxton, don’t have her number, but I highly recommend her.
BTW, there is no such thing as personality factors covarying with migraine. Most people get a bad headache they believe is migraine some time during their lives, while others do have a migraine diathesis and have chronic disease.
Migraine is an episodic manifestation of a genetic disease. Also, check out this site, http://emedicine.medscape.com/article/1142731-overview#a6. This is a good discussion of migraine symptoms and variants.
I could not fill in the poll as you have assumed that all people having migraine have headache. I most certainly DO get migraines but they are almost always migraine aura without headache.
Afterwards I can be left weak and uncoordinated for a day or so, and fatigue is worse. I rarely get headache and do not get nausea with them. I began migraine aura without headache many years ago before I went down with ME/CFS, but it got much worse after getting ME/CFS.
Fascinating article, Cort, and full of things to think about.
A few years ago I started getting migraine auras – where you have the circular visual effect (google migraine aura images). But no headache. The first one was scary. I always wondered whether I’m compressing a bit of my spine somehow when I’m sitting, and that triggers it.
But I NEVER even connected it to my CFS until today.
And if the CDC doesn’t condone migraines (and I chose the word deliberately), which affect MANY more people than CFS, what hope is there for us?
I WISH I could just think it away, and give up my obvious psychological benefits from CFS – NOT! Sheesh. As I said somewhere else recently, if we were not brain-damaged and exhausted, we in the CFS community would have solved it ourselves by now – because depending on the ‘medical community’ has so far NOT worked.
Yes, migraines are surprisingly common in ME/CFS and FM.
We are in much the same boat – with one big difference (next blog) regarding funding. Maybe the tide will turn for both of us..
It helps to remember that one can get just one symptom of migraine syndrome! For example, people can just be nauseous, or just have tingling sensations, or even think there is some sort of smell present when there is not, Chronic dizziness may be from status migrainosus.
Since it is the stress response that triggers it (from environmental stimuli), I am thinking that having CFS/ME may be one big trigger.
Having lived with migraine since puberty and now being 65, I can attest to the misconceptions and mistreatment. I inherited this disease from my paternal grandmother.
We know a great deal more today than we did even 5 years ago when my big book was published. We now know it is a disease that affects the nerves. Any vascular response is to nerve dysfunction, particularly the trigeminal nerve as you state.
Important to not is that headache is only one symptom of migraine disease. There are several types of migraine that are defined by the symptoms that accompany it. There are biological responses to migraine that cannot be denied, a runny nose only on the side of the migraine, nausea and vomiting, drooping of the eyelid on the side of the migraine, etc. Also important to note is that stress is just one trigger. Any weather changes (not just barometric pressure) affects more than 50% of migraineurs. While foods can be identified, different foods can trigger migraine in different people. And, myofascial problems contribute as a migraine trigger.
The anatomy of migraine is complex. Think what they could learn if it received the proper attention, if it wasn’t still stigmatized by some people. Migraine is recognized as a disease following the evolution of studies over the past several decades. Once again, it is the drug companies with a secondary gain that reap the benefit. Don’t get me wrong, my life with migraine is improved with sumatriptan, but not everyone can take these types of drugs and even after 30 years, they are still expensive. What motivation is there from a drug company to find a CURE! So, what does all this say about possible research for FM and ME/CFS?
It doesn’t look good, does it Cort? Thank you for a well put together article. Migraine disease is alive and well in many of us with FM and ME/CFS.
My late mother had migraines. They started in her mid thirties. She lived in Buffalo, N.Y., a place where the medical community helped get some noted German Jewish doctors out of Berlin before the Nazi’s got them. She saw what she was told was a “nerve doctor,” who was actually a neurologist. He did not tell her her problem was psychological but did say he had no medication to offer her other than a mild sedative..
What he did tell her was the second she sensed an aura to get into her darkened silent bedroom, and do what we now would think of as the “relaxation response.” He taught her this over a period of many long sessions. She would put a “Do not disturb” sign on the bedroom door and said after doing the exercises she would fall asleep. She had instructions to stay there for an extra day. I remember going with her to an appointment; I was about three years old. The doctor gave me a pegboard with different shapes to occupy me. This was about 1947.
She followed his instructions and said the migraines were less intense but also I think she was grateful that this reknowned doctor gave her permission to take up to four days off and not attend to the family. My father used to give us pie for breakfast and then we went to stay with an aunt.
Her migraines disappeared with menopause. When she was eighty three she got panic disorder and said it felt like a migraine was coming on. Fortunately she responded to clonopin and Paxil for the panic disorder.
The school secretary where I taught was so disabled by migraines that she had to take a medical leave of absence. She had been a champion swimmer in High School and her husband got her a membership to a private indoor pool for her birthday. Her migraines disappeared as long as she kept swimming..In her case, her migraines started after menopause.
I think like CFS and FMS migraines are very complicated and have multiple causes.
I have suffered horrible migraines since 1983. They have become more frequent and more painful since them. After 36 years of migraines they have become nearly daily. I have seen a neurologist and doctors who believe they can help me to rid myself of migraines. I have tried many many types and varieties of prescriptions made for migraines, nothing had treated migraines. I’m addition I have tried dozens of non traditional treatments to no avail. I recently had an episode of a TMI, and my doctor thinks the episodes are maybe complex migraines. I question whether I could have a complex migraine with all the TIA symptoms if I don’t actually have a migraine at the time. I know That a TIA and a complex migraine have similar symptoms, I am wondering how a neurologist could determine what the diagnosis would be determined. Aimovig and Emgality injections have not been successful.