The Migraine Brain

I've been reading a book called The Migraine Brain by Carolyn Bernstein, MD, and Elaine McArdle.

Whoa. Hang on to your hats and glasses, folks.

This book is amazing.

Before I continue, I will say that this book came out in 2008 and I am realizing how far behind I am in my own migraine knowledge and research. There is so much here that could have been helping me for a few years, now, and I am just now finding out about it.

Why?

Because I gave up looking a long time ago. I mean, granted, I spent part of 2008 pregnant with twins and the time since then rather occupied, but still. There was information to be had and I didn't have it.

To be honest, I trusted my doctors to have it, or at least to point me toward it. Going to see a doctor was, I felt, holding up my end of the bargain. The things I heard from them never indicated that further research might be fruitful.

But the more I think about it, the more angry I get, because the response I've had from doctors over the years has actually not only been inadequate, it's been largely condescending and dismissive. 

Yellow Wallpaper Syndrome, anyone?  

But I let myself be dismissed, because, as I've said before, because I've felt a lot of really unhelpful things about having these migraines in the first place: guilt, embarrassment, shame. 

So I've taken my inadequate prescriptions and endured the patronizing comments and gone home.

I did go to a headache clinic at the Kaiser hospital near me for a short while in 2006 and 2007, and this was where I was given my first triptan medication (triptans are the most effective treatment for migraine, and something no doctor had thought to prescribe for me during the previous TEN YEARS of chronic migraine). 

So I has what I thought was cutting-edge medication (and maybe it was, then), and I was trying several alternative treatments (rolfing, ozone colonics, spinal network analysis), and I thought I was doing all there was to do.

Well.

As it turns out, according to The Migraine Brain, I haven't even understood the nature of what was happening to me.

According to The Migraine Brain, "migraines" are not headaches, but one of many possible symptoms of migraine, a chronic, genetic neurological illness caused by an abnormality in your brain chemistry-- and one of the least-understood and most mis-diagnosed illnesses in medical history.

I'm only a few chapters into this book, and I've already learned that many of the strange symptoms I've always thought were somehow related to my migraines WERE, in fact related, and happen to others besides me. 

I've also learned that children with migraines are often mis-diagnosed with food allergies (yep: dairy and citrus-- two very common migraine triggers), blood sugar regulation problems (yep: hypoglycemia-- another very common migraine trigger), and/or dismissed as hypochondriacs (YEP: I was notoriously "sickly" and was often doubted by parents, doctors, and teachers alike).

In fact, I think that last thing is the source of my shame over this condition now. I don't advocate well for myself with doctors when it comes to my migraines, and in fact I rarely bring them up at all. I fear being seen and treated as a hysteric or a drug-seeker; like I'm making the whole thing up or being deliberately "high maintenance." 

The fact that this is probably what would happen a lot of the time is just a bonus. Ha ha.

Anyway, the book is incredibly enlightening and I'm reading it just in time for my appointment with the Northern California Headache Clinic on Monday. I think this is going to be a major, major, life-changing step for me.

No pressure. 

_____

So... check this out.

As I was reading Dr. Bernstein's description of "the Migraine Brain," I noticed something very, very familiar.

Here, I'll quote her and you can see for yourself. Emphasis mine:

"[The Migraine Brain] is as high-maintenance as they come. Like a thoroughbred or diva, it's hypersensitive, demanding, and overly excitable. It usually insists that everything in its environment remain stable and even-keeled. It can respond angrily to anything it isn't accustomed to or doesn't like....

"A Migraine Brain is always on alert, ready to overreact to any stimulus is find displeasing... The irritants that trigger a migraine vary from one person to the next and can be almost anything, from aged cheese to fluctuating hormones to low blood sugar. These triggers don't merely upset your brain, they can cause it to careen out of control with a biochemical chain reaction that may result in anything from severe head pain to vomiting to dizziness, or, in rare cases, paralysis."

Um.

Sound like anyone you know?

Yep, the Migraine Brain is described in a shockingly similar way to the Traumatized Brain as I have discussed it in this very blog:

• Hypervigilant
• Intolerant of instability or extremes
• Easily triggered and unable to regulate its response

In case you didn't click through the links above to see my old posts about trauma theory and the biochemical reaction of a traumatized brain to stimulus, here they are:

The red line indicates the normal charge and discharge of the sympathetic and parasympathetic nervous system. The horizontal lines are the boundaries of normal emotional experience. The jagged line shows the erratic charge/discharge of the traumatized brain, and how it can careen past normal boundaries and into crisis territory.

As PTSR progresses, the sufferer narrows his/her emotional boundaries in response to being triggered, only to make being triggered that much easier.

Years on, PTSR means that even normal emotional charge and discharge falls outside of one's limits of tolerance, let alone the wild ride of the trauma response.
(All images recreated from Crash Course: A Self-Healing Guide To Auto Accident Trauma & Recovery by Diane Poole Heller, Ph. D.)

So you can see why that description of the Migraine Brain struck me, right? It sounds suspiciously like my PTSR brain.

Click.

I looked through the book to see if there was a mention of a link between PTSD/PTSR and migraines, and look... just look what I found (again, emphasis mine):

A new study of Iraq veterans has documented the migraine-mental health connection more strongly than ever, as well as raising other questions about the genesis of migraines. Soldiers returning from combat in Iraq have more than twice the prevalence of migraines as the general population, and the soldiers with migraine have double the risk for certain mental health issues including depression, PTSD, and anxiety. This report, the first to document a migraine-PTSD connection, is important as we work to understand more about migraine and how to treat it.

Conducted by military doctors at the Madigan Army Medical Center in Tacoma, Washington, and presented at the 2007 annual meeting of the American Academy of Neurology, the study gathered information about headache symptoms and mental health from more than 2100 American soldiers who served in combat in Iraq. The group was 96% male, with an average age of 27.

 Among the findings:

• At least 19% of Iraq combat veterans suffer from migraines. Only 5% of the soldiers had previously been diagnosed with migraine.

• 50% of the soldiers with migraine also suffered from clinic depression, compared to 27% of soldiers without migraines.

• 39% of soldiers with migraines are also suffering from PTSD, compared to 18% of soldiers without migraines.

• 22% of soldiers with migraines have anxiety disorders, compared to 10% without migraines. 

•  The migraines continued and often got worse after the soldiers returned to the United States.

• Only a tiny fraction of soldiers with migraine were using triptans, the most effective migraine treatment.

• Soldiers with migraine and depression or PTSD-- but not anxiety disorders-- had more frequent migraines. But the pain and duration of their migraines was not different from migraineur soldiers without these disorders.

 Why are these soldiers suffering migraines at a higher rate than the civilian population? The researchers offer various theories including exposure to chemicals, extreme heat, dehydration, lack of sleep, and irregular means, all well-established migraine triggers. The suggest that migraines may lead to psychiatric disorders, and mental disorders may lead to migraine. This is called a bi-directional influence, a theory supported by prior studies of migraine and depression. 

So. I'm no doctor, but man, the connection seems clear to me.

Remember when I told you about the research I found that suggested that PTSR might be a shame disorder? If shame-prone people are more susceptible to a trauma response, the implication is that in those people, there is a pre-established framework that allows PTSR to take root-- a tendency to withdraw, dissociate, self-blame, to name a few examples.

It makes sense to me that someone susceptible and vulnerable to this kind of biochemical imbalance would be more likely to be susceptible to other kinds of biochemical imbalance-- like the one that causes migraine. Or maybe it's the same biochemical imbalance? 

Either way, it strikes me that following this logic means that it isn't that traumatic experiences cause PTSR or migraines, but that some people are predisposed to these responses, and under the right conditions, will be more likely than the average person to have them.

Iraq (or any war zone) being, of course, an extreme example of "the right conditions."

It's difficult to pull the threads apart, here-- these things seem so deeply linked in my own experience that I can't imagine there isn't a profound connection between them. I knew that if I found a mention of PTSD in this book that it would suggest a link between trauma and migraines, and it did.

I want to volunteer to be part of a study, or assist in writing a paper, or write a goddamn book about it myself if no one else wants to, because this feels like a vital clue to figuring out how to treat both conditions, to me.

Am I imagining things? Do you see the link I'm seeing?

Surfing

I'm in a bit of a holding pattern at the moment. 

I guess by that, I mean that I don't have any new recovery-related stories to tell. No big epiphanies lately, no great leaps forward.

Part of this is probably due to the fact that I haven't been to see Dr. Oz in a month-- she had to miss two weeks to go on vacation, and I had to miss two weeks for various reasons, and our four missed weeks turned out to be consecutive. 

So. No therapy, no forced introspection. Ha.

But I think it's also because I'm in a coiling stage, preparing to spring. So far, that has tended to be the pattern, and the spring usually happens shortly after I notice the tension of the coil.

Time to jump, apparently.

In my last post, I laid out some initial plans for Project Monkey-Off My Back. This blog has been teetering on the brink of turning into a migraine blog, so pervasive are these devilish  headaches of mine, and after the disappointment of being rejected from the migraine trial, I decided to regroup and tackle the migraine issue more aggressively than I ever have before. 

The great thing about those plans is that they will very likely have a cascading effect on the PTSR as well. Better regulation of my medication, my depression, my food intake and trigger exposure can't help but impact more than just the headaches.

And then there's the physical aspect of this project: all the exercise, stretching, and flexibility and posture improvement I'll be doing could mitigate one of my biggest migraine triggers-- muscle tension and improper alignment. Not to mention the fact that it will make me healthier, improve my strength and endurance, and support my continued weight loss.

And there's more: that physical component might be a very important key to unlock this PTSR.

Serendipitously (as always seems to happen with this stuff), my sister and her family were visiting over the past week, and she was telling me about some amazing work that a friend of hers has been doing with veterans at Camp Pendleton in San Diego.

Before you go any further with this post, I strongly urge you to read this story, about Carly Rogers and Surf Therapy, a method she developed as a PhD student in Occupational Therapy to help children with autism and mental illness, and which she adapted to serve veterans returning from deployment with PTSR.

Go ahead. I'll wait.

...

Welcome back. Cool work, eh? 

I've met Carly and knew a bit about what she was doing, but hearing about it more extensively this time, it struck me in a completely different way. 

First of all, I thought that I'd really like to talk to her about her work with vets, because, as you know, helping veterans is something that is becoming more and more of a motivator for me as I write this blog. 

I wanted to hear more about it, and more about the VA system, and maybe get some information about how to become a resource. And I was thinking about my own work in this blog, and how I might be able to turn it into something more accessible to people like her students, who could use it to assist in their recovery.

I'd really like to do that for them.

But right now, as I'm writing this down, I'm seeing a more personal connection between the work Carly is doing and the plans I have for my own body over the next few years. 

I think she has a real point about how physical challenge makes you feel better. And I see-- I really see-- how the work those marines are doing with her can affect their PTSR.

And I see how it could affect me.

I think that my physical problems are part of what keeps me controlled by my PTSR. Physical weakness definitely contributes to paralysis and passivity, which are the hallmarks of my personal brand of suffering. I see how mastering a physical skill-- one that requires conditioning and focus as well as strength and stamina-- would go a long way toward mitigating those factors.

Strength, flexibility, fitness, physical mastery: in a world defined by constant physical threat, this is literally taking the power back.

I've never made this connection so viscerally before.

Whoa.

Wow.

So, that just happened. A bit of a leap forward, after all. 

Don't forget: this is recovery in real time, folks. You saw it here first.

So I'm recommitting to my plans from that last post. Not that I'd lost the commitment-- I've got an appointment next week with the Northern California Headache Clinic, where two doctors take a holistic approach toward migraines: one works with you from the medical side, assessing and monitoring your physical condition, adjusting medication, etc., and the other comes from the behavioral side, doing bio-feedback, tracking food intake, identifying triggers.

This is essentially the same method they use at the Standford Headache Clinic at the renowned Stanford Medical Center, which is where I'm headed next. I thought I'd try these guys first because it's a smaller program and easier to get to. But I'm looking for a good fit, so I'll keep trying until I find it.

I'm also going back to Pilates, which did, for a short time last winter, begin to make me feel like I could possibly, one day, maaaybe get past my back injuries and build some real strength. It was a great feeling. It made a difference.

Just like Carly Rogers said it would.

Boinggg!

Project Monkey-Off-My-Back

More migraine trouble. :/

Just had one that lasted eight days. In fact, as today is only day nine, I can't really be sure the migraine is gone until I've gone the whole day without it coming back. It's 1pm now. Halfway through. So far, so good. Wish me luck.

I went and saw Dr. John Beall at Rise Bodyworks for a little Active Release Therapy yesterday, and he gave me an absolutely HORRIFIC occipital adjustment. 

(Him: Yeah, that was your SKULL making that noise. 
Me: Have you ever had anyone's head pop off and fly across the room when you do that? 
Him: Only once. Well, twice. 
Me: Oh my god I hate you.)

Anyway, I survived it, and it took a few hours for my eyes refocus and my ears to stop ringing, but seemed to be the deciding factor in the end of the 8-day migraine. Because Dr. John is awesome.

Insane and sadistic, but awesome.

It's so automatic for me to just tolerate the migraines that I don't usually notice there's been a major change in frequency or character until it's been going on for a while. Well, I've noticed. They've increased in frequency over the past few months-- I definitely have migraine pain more often than not these days-- and they've changed in character, too. The nausea component has increased dramatically. Sometimes I don't even have the headache part, just the nausea, for days at a time.

I have to admit, it's really starting to get to me. It's overwhelming. There are so many possible triggers, so many factors involved, that fighting these things sometimes seems impossible.

Even at my best, when I think the migraines aren't controlling my life, I'm deluding myself. They prevent me from all sorts of things, all the time. It's the migraines, not the PTSR, that make me feel most fragile. It's the migraines that keep me from doing too much, going too far, being too relaxed, being too brave.

I'm totally letting them win.

I've let them demoralize me to the point of paralysis. I'm just tired of dealing with them, and I've given up. Which gets me exactly nowhere.

It's hard to maintain a sense of aggression toward them, but I'm going to try. Again. I've tried everything under the sun to battle these things, but as my husband pointed out last night, I "haven't tried them all at the same time."

Well. That's true. Juggling many things at once not being my strong suit, and all.

But enough of that. I can't let that be true anymore.

So. Gotta try them all. At the same time. I'll make a list, and cross through the things I'm already doing. Here we go:

1. Talk therapy
2. Antidepressants
3. Abortive meds that work
4. Active Release Therapy
5. Avoid known triggers
6. Ride bike at least 4x/week
7. Track food intake for possible trigger connection
8. Establish regular stretching routine: 1x/day
9. Establish regular body-rolling routine: 1x/day
10. Resume Pilates classes: 1 group Reformer class + 1 mat class per week 
11. Resume migraine-fighting supplements: magnesium, vitamin B. 
12. Find a new doctor with experience treating migraines; discuss the following:
1. Prophylactic migraine medication options
2. Alternative migraine treatments 
3. Other supplements: alpha lipoic acid, CoQ10, feverfew, butterbur, estrogen

That's a good list for now. I'll keep you posted on how it goes.

I tend to think of migraine-wrangling as a full-time job, and while it sort of is, in many ways, it's also not that difficult to incorporate the list above into my day. I get overwhelmed by the idea of multiple commitments, but the plain truth is that I DO HAVE TIME FOR ALL OF THIS. More now than at any other time in my adult life.

I have time for this. I have time for this. I HAVE TIME FOR ALL OF THIS.

It's pretty sad that I can argue with myself about whether or not I have the time in my oh-so-busy schedule to do the small, simple things I need to do to find relief from the pain that restricts my life so much, but that's what I'm doing right now. I'm protesting. As if that were at all reasonable.

Well.

I'll still protest, but that goddamn Wise Adult needs to step up right now and take the wheel. Don't listen to yourself, Self. Get this shit done.

I'm writing this here in the blog to try to keep myself accountable. You heard it here first, folks. You are hereby granted permission to request progress reports.

Project Monkey-Off-My-Back has now commenced.