J BUSH

In Part 1, I talked about “highly sensitive people” and the similarities with people who have migraine. Now I’m going to address what having a migraine disorder has to do with me sussing out relationships.

Last week, ex-staffers of Rep. Michele Bachmann revealed she suffers from migraine disorder and that they’re worried whether she could fulfill the duties of the Oval Office considering her condition.

In an article subtitled “Migraine is miserable, but manageable,” neurologist Christina Peterson responds with the following. I’m quoting her at length because she says everything I want to say, and says it with the authority of research:

When Minnesota congresswoman and presidential candidate Michele Bachmann was revealed to suffer from migraine disorder, it caused a lot of debate. Bachmann herself, however, was eager to change the subject.

This is understandable. When it comes to migraine headaches, lots of sufferers clam up. In fact, as a doctor, I’ve found that people are more willing to admit to chronic depression or bipolar disorder than they are to having migraine. (You’ll notice I write “migraine” and not “migraines.” That’s because migraine is a disorder and not an incident. For the same reason, we say “epileptic attack” instead of “an epilepsy.”)

It’s not clear why this is. Part of it may be due to insufficient funding for migraine research. Part of it may be due to sexism. (Migraine affects three times as many women as men.) But most of it is probably due simply to misunderstandings about what’s in fact a very common, although painful, disorder.

When I was a neurology resident in the early 1980’s, the Handbook of Clinical Neurology explained that migraine disorder often seemed to strike frigid, uptight, and perfectionistic housewives who might be neurotic. To be fair, this edition was written in 1952, but it reflected a mindset towards migraine that remains surprisingly prevalent. For instance, the notion of a “migraine personality” is still with us, even though it’s of dubious validity.

Over thirty years ago, in her essay “In Bed” from The White Album: Essays (1979), Joan Didion wrote:

There certainly is what doctors call a “migraine personality,” and that personality tends to be ambitious, inward, intolerant of error, rather rigidly organized, perfectionist. “You don’t look like a migraine personality,” a doctor once said to me. “Your hair’s messy. But I supposed you’re a compulsive housekeeper.” Actually my house is kept even more negligently than my hair, but the doctor was right nonetheless: perfectionism can also take the form of spending most of a week writing and rewriting and not writing a single paragraph.

My neurologist – who used to run the neurology program at UCLA – said “there is no such thing as a migraine personality.”

However, perhaps what some perceive as the migraine personality is as I wrote in the last post – that migraine sufferers might actually be “highly sensitive people” – a set of traits which are also, like migraine, a neurological variation and biologically based.

I suspect the myth of the “migraine personality” has lasted because it’s more convenient to blame the victim than it is to ask – why do doctors have no idea what causes this extremely common condition?

The fact that it’s an overwhelmingly female disease (and very poorly understood) means it’s easy to write off as the by-product of a hysterical personality. It would have been called “nerves” a hundred years ago, and that’s essentially what they’re calling it now.

Migraine is sort of like rape – sufferers don’t want to talk about it because the implication is always “what did you do to get it?”

Peterson writes:

How bad is the stigma?  In 2010, at the American Headache Society Annual Scientific Meeting, researchers presented some numbers on the subject. These were based on the Stigma Scale for Chronic Illness, a tool created at Northwestern University to measure factors such as how often people feel criticized or outcast for having an illness. The scores for those with episodic migraines were only slightly lower than for those with epilepsy, multiple sclerosis, or Alzheimer’s.

So let’s clear up a few basic facts. “A migraine” isn’t just a really bad headache. Migraine is a neurologic condition, often inherited, and it affects more than one in ten Americans…..

The sufferer of migraine disorder does not bring it on himself or herself. Strength of will cannot prevent an attack. Nor do women get migraine attacks because they are “hormonal.”  (Estrogen does play a role in the migraine process, affecting certain receptors in the brain, but it is only one of many, many neurotransmitters involved.)

What we know today is that several genes, some identified and some not yet tracked down, appear to be responsible for migraine. It is a brain disorder of intricate complexity. It does not spring from neuroticism or repressed anger. Certainly, some people with migraine might have repressed anger, but there’s no sign that this causes migraine disorder. People can have migraine without repressed anger or repressed anger without having migraine.

So basically – just because I’m angry doesn’t mean I’m causing my migraine condition.

That’s not what the neurologist/headache experts I saw at the Mayo Clinic seem to think however. The hospital’s procedure is to send every patient the contents of their patient file (which is actually pretty great – many doctors resist and get controlling when you want your records, even when they already know you’re seeing multiple doctors in an effort to control your disorder.)

I received not only my lab reports but also the notes the doctors wrote about me. The doctor who was a real prick (Dr. Vargas) wrote this:

Her mood and affect are somewhat defiant, somewhat abrasive, and suspicious at times. Overall there does not appear to be any outward sign of depression or anxiety.

Impression:

1. Probable chronic migraine; rule out secondary causes.

2. Probable medication overuse headache.

3. History of emotional abuse with history of anorexia and bulimia.

4. Probable underlying psychologic contributors.

The Mayo Clinic doctors didn’t tell me anything I didn’t already know about migraine. And besides the spinal tap (to reduce my cerebrospinal fluid pressure), all they had to offer me were more drugs (all of which have significant side effects. The steroid they prescribed for me – dexamethasone – is used by Bangladeshi hookers to gain weight.)

I already knew I was using too much Immitrex (a vasoconstrictor that shrinks the dilated blood vessels in the brain). And I knew that Immitrex has serious side effects, including holes in the heart wall. But if there’s a pill that will take away your migraine in minutes, and let you live your life like a normal person, who wouldn’t take that?

I told my neurologist/headache specialist here in L.A. what the Mayo Clinic doctors had written. She laughed and said “they must not understand what those words mean. You are not abrasive. You do get teary when you get upset, but their egos must be too weak to have a patient stand up to them.”

Then she told me about how she had referred another patient to the Mayo Clinic. The patient came back without her uterus.

“I knew she had fibroids, and I saw the lab reports afterwards. But I never, before or after, thought she needed a hysterectomy,” said my neurologist.

So The Mayo Clinic’s approach for my doctor’s other patient was to cut the woman parts right out of her.

“Gave her a hysterectomy,” my doctor kept repeating under her breath as she prepared my injections.

In the Mayo Clinic office, I was never disrespectful, but I was assertive and direct. When they suggested antidepressants, I told them about the new books that have just come out where author/researchers have run meta-data analyses on the FDA clinical trials for antidepressants and found that they don’t work and possibly change your brain structure permanently. That’s when they started treating me like a hysterical housewife who doesn’t know what’s good for her.

They told me how much good these drugs would do for me. I told them that I didn’t travel long-distance to devote almost a week to being at a hospital just so I could find new drugs to mask the symptoms. I am trying to solve this problem – find the trigger to which I’m mounting an inflammation response in the brain. They kept patronizing and mollifying me and said what amounted to “this is not something that has a cause. It’s just genetic. You can’t solve it.” (I find this ironic considering they then wrote in the notes “probable psychologic contributors” – acknowledging they do believe there are contributors and it’s not purely genetic.)

They also were extremely patronizing about my desire to not want to spend the rest of my life on heavy-duty drugs if I don’t have to. I told them about taking an anti-seizure drug for five years which seriously impacted my ability to think and form words. (I’ll tell you that story in another post.) They reassured me by saying the new drugs they were giving me wouldn’t do that. I told them I suspected I was having a complex allergic reaction – say to mold or something else common – and the allergic response was triggering my migraine episodes. They said “we have no way to test for what that could be.”

As it happens, I’ve seen another doctor since then – an M.D. who practices “functional medicine” which treats disease as symptoms that the body’s complex, interworking systems are going off. This new doctor very quickly zeroed in on what’s going on with me, and I’m already starting to feel better. Which proves in my mind that my migraine disorder is not a result of anything going on with me psychologically.

The Mayo report ends by saying they were going to refer me for a psych consultation (which they never did – I suspect they already knew what I would say about that). Just to be clear – I have nothing against psychiatry or psychology. I see a therapist and find it very helpful and encourage everyone to do it.

Peterson writes:

The pain of migraine attacks is often severe, but migraine-specific medications often stop migraine attacks, and most people with migraine are able to function fully in life. Various articles written over the past few days refer to Bachmann’s “chronic migraines,” but this seems like journalistic shorthand for “occasional migraine attacks.” In the world of medicine, “chronic” migraine means having fifteen or more migraine headache days per month. It’s doubtful that this is Bachmann’s condition. Even if it were, many people are able to work and function successfully with it.

Should simply having a migraine diagnosis prevent a man or woman from becoming president? We know that Ulysses S. Grant and Thomas Jefferson suffered from migraine disorder, and that was long before the era of modern treatment. And lots of politicians presumably suffer from the disorder. Since 12 percent of Americans suffer from migraine, it’s quite possible that 12 percent of our Senators and Representatives do so, too.

I do suffer from chronic migraine, and I’m grateful to Peterson for pointing out that many people are able to work and function successfully with this condition. However, just because my migraines can be controlled with prophylactic and acute drugs doesn’t mean I want to be on drugs for the rest of my life. What I do want is to understand what triggers my attacks and do what I can to prevent or control my body’s response to those triggers.

So what does this all have to do with my ability to suss out relationships?

As I said in Part 1, I’m very sensitive, meaning I’m really good at picking up what’s going on with people, with the environment around me. A lot of scientists think what we call “intuition” is really the rapid absorption and processing of many small sensory clues that we understand on a subconscious level. This is what I have. Or, rather, this is what I do.

I often get migraines when I’m around toxic people – people in dysfunctional relationships, people who are not telling the truth to themselves or each other or me – people who are not good for me to be in relationship with. This isn’t because of the “psychologic contributors” the Mayo Clinic doctors blamed my condition on. This is because either consciously or subconsciously, I’m picking up all kinds of little clues about the person I’m interacting with. And some of those people (or relationships) are people (or relationships) my body needs me to not be around.

If I am one of the 15-20% of people and higher animals who have the neurological differences that make them “highly sensitive,” then it would make sense for someone like me to pick up something wrong in someone else and mount my genetically predisposed neurological reaction (migraine) to alert me.

So instead of migraine personality – you could call it “migraine nervous system.”

To put the theories together – if migraine evolved as a biological warning system to keep us away from stuff that can hurt us and our tribes (as many researchers think) – then I’m the member of the tribe you can ask to check out the newcomers.

To illustrate this ability in action: I got a migraine attack in the presence of those Mayo Clinic doctors.

Here’s the thing.

I’m very sensitive.

To many, that’s a bad thing. And I get that.

To me — it’s like a secret weapon. Some scientists think migraine developed through evolution to make some members of the tribe into human barometers. We always know when a storm is coming because Tik-Tuk gets a migraine. A human signaller that something nearby is dangerous, and we shouldn’t eat or smell or live in that.

By now migraine has probably overdeveloped – outstayed its usefulness. It definitely has in me.

But the same qualities that give me migraines also give me heightened insight, an outside that’s extremely permeable (“spongey” as my friend P calls it) and liable to take in whatever’s around me – someone else’s mood, that there was just a fight in a room, etc.

I recently heard about this thing called “Highly Sensitive People” – people having the innate trait of psychological sensitivity. Apparently these people process sensory data more deeply and thoroughly due to a difference in their nervous system. Research shows that about 15-20% of humans and higher animals have a nervous system that is more sensitive to subtleties.

On this self-test, I answered yes to every question except “I make a point to avoid violent movies and TV shows.” Not only do I not avoid them, I write them.

What’s interesting is that the descriptions of highly sensitive people are very similar to the descriptions of people who have migraine, or even their symptoms (reacting to smells or visual triggers, etc.) Since migraine is a nervous system disorder, and highly sensitive people appear to have altered nervous systems, maybe they’re related?

I want to note that clinical studies have found that stress or psychological factors don’t contribute to migraine, even though doctors such as the ones I visited at the Mayo Clinic continue to tell patients that’s a cause.

However, what I’m theorizing is that perhaps many people with migraine are highly sensitive people, and migraine is one of the ways their body signals there’s something wrong in the environment and they need to remove themselves from the offending trigger.

An offending trigger like – people in bad relationships anywhere near me.

Ok, I’m tired now and have to adhere to my strict bedtime. But I will write part 2 of this post tomorrow.

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I’m reading “The Gifts of Imperfection” by Brene Brown. She said this amazing thing about shame – something like “shame doesn’t like having its story told.” That is what this blog is about.