Cloudy

All right, I've made the switch.

Dropped the Wellbutrin (which I discovered quite unpleasantly has been causing me anxiety at a low and constant rate for the past year and messing with everything), have started the ramp-up with Cymbalta, and am continuing the ramp-up with Topomax (my first-ever preventative migraine med).

Update, 9/14 2:30pm: In migraine news, since I began the Topomax 2 weeks and 5 days ago, I have had 7 migraines, one of which lasted 10 hours, the rest of which lasted 2-5 hours, and only one of which "broke through" with full-fledged migraine pain. As ridiculous as what I am about to say may sound now that I've written all that down, this, my friends, is HUGE PROGRESS! 

I'm not even up the the full therapeutic dose yet and I've already dropped from an average of 75% migraine days over the past few months to 36% migraine days in the past 19 days. (!!)

Anyway, back to Cymbalta and Topomax:

Both of these are expected to make me excessively tired during the ramp-up phase.

BOY, IS THAT EVER TRUE.

I feel like I've been hit by a bus. A really, really tired bus. After I had collapsed from exhaustion in the middle of the road.

This level of tired is seriously uncool. I've already been operating at a ridiculous level of sleep deprivation with this over-active amygdala of mine-- according to the sleep sensor bracelet I wear, I never have more than 4.5 hours of non-consecutive sleep in a night, no matter how long I'm in bed. So I'm sort of stumbling around trying not to fall asleep in my soup.

But believe it or not, I already feel... better. Lighter. Easier. Just... a bit... better.

The biggest difference, and the most welcome one: I am enjoying my children more.

I have more patience with them. I am not constantly just trying to get a moment of peace and physical distance from them. I am able to look into their shining little faces and enjoy moments with them without reservation.

It's been a while. I shudder to think how much longer it might have been.

That anxiety, that agitation, had wormed its way into my personality and was really starting to make its mark. My husband keeps beaming at me and saying, "It's so nice to have you back!"

I guess I'm back. :)

Or at least, I'm on my way.

I didn't know I was so far gone, which is ABSOLUTELY TERRIFYING JESUS CHRIST. But I'm on my way back now, and I'm grateful for that. I don't know if what i'm doing will be enough, or if it will be the right combination of chemical magic, and let me just say that I am more than a little horrified by this whole chemical clusterfuck, yes I am indeed, but today, I feel remarkably better than I did last week, more than I believed possible.

So that is something. No small something.

I want to get out of this state of chemical dependency as soon as bloody possible-- I've never had an experience like I had with that Wellbutrin a couple of weeks ago, and realizing what it's been doing to me for the past year is terrifying and frustrating and confusing and infuriating.

How could I not know?

I knew I was uncomfortable, but I figured it was just the price of playing poker, you know? I thought I was just pushing myself to uncomfortable places. But I think also that I just have a really, really high bar for what I'm willing to put up with. In fact, I think there's probably an incredibly high threshold before I'll even notice the discomfort in the first place, so dissociated have I been all these years, and so used to dealing with chronic pain.

I've been told that before, that people with migraines have ridiculously high pain thresholds, and I've seen that in myself. So I think that's played a part in my lack of awareness. I know that when I cash it in-- when I reach a breaking point and have to go lay down or stay home or whatever-- it's because I am BEYOND jacked up. Discomfort is de rigeur for me, so it takes something fairly catastrophic to take me out.

Thanks, Wellbutrin. You jerk.

Anyway, I'm not feeling great today, although I did get a bit of a nap yesterday and might get to bed early tonight, too, in my ongoing efforts to mitigate this hit-by-a-bus feeling. So I will leave you with this song by Simon and Garfunkel, which seems quite apropos.

Enjoy. And Happy Fall. I hope the leaves are beginning to change where you are. To me, that always feels like the real New Year season, when the slates get cleaned and the world gears up for a fresh start.

I'm ready. Are you?

Cloudy
The sky is gray and white and cloudy,
Sometimes I think it's hanging down on me.
And it's a hitchhike a hundred miles.
I'm a rag-a-muffin child.
Pointed finger-painted smile.
I left my shadow waiting down the road for me a while.

Cloudy
My thoughts are scattered and they're cloudy,
They have no borders, no boundaries.
They echo and they swell
From Tolstoy to Tinker Bell.
Down from Berkeley to Carmel.
Got some pictures in my pocket and a lot of time to kill.

Hey sunshine
I haven't seen you in a long time.
Why don't you show your face and bend my mind?
These clouds stick to the sky
Like floating questions, why?
And they linger there to die.
They don't know where they are going, and, my friend, neither do I.

Cloudy,
Cloudy.

STRIKE ONE

Well, THAT was a bit of a fiasco.

I went to the Northern California Headache Clinic last week and met with Dr. Kenneth Peters, who, I learned, was on the team that developed the first triptan medication, Imitrex, back in the '80s. 

This is significant because Imitrex was the first game-changer in the treatment of migraines and triptans remain the most effective migraine medications to this day, so that is no small thing.

Anyway, we crammed a lot of information into a single conversation, so it's always hard to know exactly how much is landing on both sides. But he did hear that I was uncertain about my current course of antidepressants and that my migraine meds were unreliable and that I'd never tried a preventative med before.

"Really?" he said to me, looking down at the file in front of him. "Sixteen years of chronic migraines, you're up to 20 or 25 days a month now, and no one has given you a preventative?" He leaned forward. coming up on the desk on his elbows. "REALLY?!"

I gave him a grim smile. "Nope," I said. "And that is why I'm here."

He offered to take over both my migraine and antidepressant prescriptions, and I let him. He agreed to bump up my Wellbutrin to 450mg, but warned me that Wellbutrin can cause anxiety and if I was already concerned about anxiety, I should watch out for it. He wanted to give that a try, and if it wasn't right, try another type before looking at "the addictive drugs." 

Meaning: the benzos. The anti-anxiety meds. Xanax, Ativan, Klonopin, etc.

Which is fine. I have no desire to form any sort of habit. Lord knows I've got enough to do.

So I took the prescription for the increased Wellbutrin. Check.

Next, he prescribed me a preventative med called Topiramate, a form of Topomax, which I'd heard called "Dope-o-max" on the migraine forums because it supposedly makes you slow and stupid and fuzzy.

Which, hello, is JUST WHAT I NEED RIGHT NOW. :/

When he saw my eyebrows shoot to my hairline, Dr. Peters said, "You've probably heard this drug referred to as "Dope-o-max. Let me tell you about that. We'll spend the next several weeks ramping you up slowly to a full therapeutic dose. During that ramp-up time you may find yourself feeling a bit cognitively impaired. I call them 'senior moments.' You might find yourself having a few more "senior moments' than you're used to having."

Being used to having quite a lot of "senior moments," especially when my depression and anxiety are on the rise and my medication is inadequate for the task, this caused me a bit of concern. How many more senior moments can I take before I become a danger to myself and others?

I told him that. He said, "Really, it shouldn't be that bad. And it should only be for the next month or so. After that, things should even out and go back to normal. For most people, it does. And if it doesn't, we'll try something else."

I figured it was worth a few weeks of discomfort if the end result was fewer migraines. And the real end goal of this clinic's work is to have me off drugs all together, or at least as much as possible, and as soon as possible, once I learn the bio-feedback techniques and identify triggers and make the lifestyle changes that will prevent migraines even better than medications can.

Worth it, in the long run. At this point, I'll try anything.

At least, that was my thinking last Monday.

So I started off with my increased dosage of Wellbutrin and my Topiramate. I take the Topiramate at bedtime, which is good, because even the tiny, 1/4 dose I'm taking now makes me markedly sleepy. It might help me to sleep better, which might ease up one of the triggers for migraines, depression, and PTSD all at once, so that seems like a win, right?

The Wellbutrin was a harder thing to gauge, anti-depressants having a cumulative rather than an immediate effect, but I did notice, that first morning, a bit of a zip in my step when it hit my system, mid-morning. As I can always use a zip in my step, I counted that as a win, too.

Skip ahead to Saturday.

I flew down to LA Saturday morning to attend two major events over the weekend: my youngest sister's bridal shower and my dear cousin's wedding. I was feeling a little antsy and exhausted, but as this is not too far from my normal state, I wasn't alarmed.

I went straight from the airport to the shower, already in progress, and walked into a room full of people. Not my favorite thing, but as the people in the room were most of my favorite people, it was best-case scenario in that regard. I was feeling a bit shaky and off, but chalked it up to my usual self-consciousness and to the New Orleans-like LA weather (90+ degrees, 90%+ humidity?! WTF, global warming?! DO YOU NOT REALIZE THIS IS A DESERT?!).

And then, right in the middle of the shower, a strange feeling descended over me. I can't describe it. A sort of raw-skinned, fogged-out, paranoid ickiness. I was freaking out. I couldn't wait for the room to clear. I don't remember being that uncomfortable before. I didn't know what to call it, what I was feeling, but I felt incapable of tracking conversations and didn't trust myself to communicate clearly. I attached myself to my best friend of 33 years, who was there (thank god), and who kept me entertained the whole time, and I think I managed to get through the event without anyone noticing much was off about me.

After everyone was gone, I was able to tell my sisters about the new meds and that something had kicked in and was making me uncomfortable, but at that point I didn't know what to call it and didn't know what to do. Over the course of the day, it slowly wore off, and by evening I was feeling exhausted but a lot better.

The next day, the same thing happened, but with fewer people around to exacerbate the weird part. We drove up to Hollywood to check into a hotel near my cousin's house to get ready for the wedding, and it became clear then that the uncomfortable part seemed to happen when the Wellbutrin hit my system. That was when it struck me that what I was feeling was anxiety.

It's funny to me to think that it was so hard to figure out what it was that I was feeling. And even funnier (ha ha. Ha. No really. Ha. :/) when I realized I'd been feeling a very low form of that feeling for a very, very, verrrry long time. But anyway, it struck me like a lightning bolt that what was happening to me was just what the doctor said might happen: the Wellbutrin was triggering a high state of anxiety.

What happened next was one of the few truly awesome moments of kismet that has happened to me throughout this whole sordid drug mishap. I said, out loud, "I don't think I'm going to be very much fun at this wedding. I am freaking out. I think my medication is causing me major anxiety and I don't know if I'm going to be able to handle this."

And the two people I said this to turned to me and said, in perfect unison, "Do you want a Lorazepam?"

And that, ladies and gentlemen, is Hollywood.

At first, I declined. I had so much on board at the moment that was messing with me that I didn't want to add anything new and unknown to the mix, especially since I was about to be in a crowd of people I didn't know at an event that I desperately wanted to be present for.

Then I realized that Lorazepam was Ativan, which I had once in the hospital after I had my babies, to fantastic effect, and that the doctor had already said that class of drugs was on the table to add to my current load if necessary, and that I was already in about as bad a shape as I could be in, so I said, what the hell.

And I took half a pill. Half a miligram. A teeeeeeny dose.

A while later, I felt quite a bit better, and it was clear that no ugly side effects were forthcoming, so I took the other half.

And friends, I felt FANTASTIC. Not high, not altered, not floaty or mellow or even relaxed. I felt like myself. My REAL self. More like myself, in fact, than I have in years.

That pill took the edge right off. ALL OF IT.

And that gives me some information to discuss with my doctor. For starters: my anxiety is fucking REAL and it's been dismissed for YEARS and I've even dismissed it myself and have thought that wanting to jump out of my skin for the past year and a half has just been the result of the intense therapy I've been doing and not the result of a medication that's been driving me even crazier.

I didn't know that's what anxiety felt like. I didn't know what to look for. 

I do now.

So when I came back from LA, I called the doc and told him what had happened. He told me to drop back to 300mg of Wellbutrin and we'd get me off of it right away.

I'll be switching to Cymbalta on Monday, which targets anxiety, depression, and also body pain, all of which are major factors for me, and I'll see if this is a better fit. I'm going to talk to him extensively about my PTSD and make sure he's including that in his decision about what drugs to prescribe. But I need to get all of this back under control so I can move forward, and I can see now that the last year and a half has been something other than what I thought. I've been in the grips of anxiety, not being pushed out of my comfort zone by therapy. 

I'm sure that's happened too, but I don't know who much the second was clouded by the first.

After a couple of days back on the old dosage, I was still freaking out and the anxiety was running rampant, so I called back and asked him to prescribe me something to help me get it under control until I can get this stuff out of my system. He gave me some Klonopin. It has been nothing like the 100% normal feeling of Ativan, alas, but it's been slightly better than nothing. I feel a bit sedated, which I guess is the goal for this med. It's just not my goal

Despite all the medications I've taken over the years for migraines and depression  and stuff, I have never had an adverse reaction like this, and never felt "heavily medicated" like this before. Right now, with all of this going on, I feel more anxious about all the meds I'm taking than anything else. I'd just like to feel calm and peaceful.

I would totally take a pill for that, right now. I am not averse to that. Not now, I'm not. I mean, I'm doing the goddamn work to learn how to get myself there drug-free, and I haven't forgotten that this is the goal, but man, it sure would be nice to take the easy way for once and find the pill-pushing doctor and seek the short cut.

Why do I always have to be the responsible one? Why do I always have to choose the long-term solution over the short-term relief?

I mean, I totally get the value of the permanent fix, the safe choice, the holistic method. For god's sake, I think I've more than proven that.

But man, that Ativan allowed me to experience one of the most glorious weddings I've ever been to-- my cousin marrying his long-time partner in a newly-legalized ceremony that they-- and we-- fought long and hard to win the right to have-- and it was truly one of the great pleasures of my life to have been there to share the night with them and see how much it meant to them to take part in this thing they never dared to dream they'd be able to have...

And if a little shortcut now and then to get to have a memory like THAT is wrong, then god damn it, I don't want to be right.

I don't want to toy with dangerous, habit-forming drugs. I just want to feel like myself again. Not my new self. My old self. My pre-all-this-bullshit-self. My enjoyed-her-fucking-life-self. My didn't-walk-the-medication-tightrope-self. 

Realizing that something I thought was helping, wasn't, was a real blow to my confidence. And it just feels like more time, wasted. I am tired of wasting time.

I AM TIRED OF WASTING TIME.

I am tired of being at the mercy of chemistry, within my body and without. I am tired of forces beyond my control having WAY TOO MUCH OF A SAY over how I feel and how I act and what I am able to accomplish in a day.

I want my life back. I want it back. I thought I was getting closer to getting it back, and now I really don't think I am. I feel back to square one. My system has been poisoned. I now have yet another thing to recover from before I can back to the business of recovery. This is not acceptable to me.

Project Monkey Off My Back 2.0: Remove the extra fucking monkey that jumped on when I wasn't looking. WHAT THE FUCK, MONKEYS?!

Hey, that could be the title of my book, when it comes out. Or the subtitle: 

"The Girl Who Lived, or What the Fuck, Monkeys?!"

Or maybe a band name: Kate and the Fucking Monkeys.

Okay, maybe I should stop now. Did I mention the Klonopin?

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.

Bemoaning Bitterness. Boycotting Boring. Bonus: Biking.

What was I saying about not being a "poor me" type of person?

Well. It turns out that I wasn't rejected by the migraine medication trial because I had too many migraines (poor me!), after all.

It was actually because of the Wellbutrin. 

I have crossed voicemails with the liaison there a couple of times this week, so I don't have very detailed information, but I was told that the doctor I spoke to-- the one who thought I'd be a particularly good candidate for the study-- had been fighting to have me included despite my current course of Wellbutrin.

Apparently, he'd kept up the fight all month, but in the end, the people in charge refused to admit me. Which is why I wasn't told until the day I was supposed to schedule my infusion.

On one hand, I really appreciate the doctor's tenacity. It was cool of him to push on my behalf.

On the other hand, you can't tell people with a debilitating chronic illness that there is a 50/50 chance of them getting a life-changing drug that will make them better when there isn't. I never had a 50/50 chance, if the Wellbutrin was an issue from the beginning. 

It would have been nice to be a bit more emotionally prepared for a "no."

So anyway. I really latched on to that "too many migraines" theory because it was the only thing that made sense to me, and that was definitely me saying "poor me."

Not that I don't get to say that every once in a while, I guess, but I don't like to do that, and I really don't like feeling like I deluded myself a little bit. It doesn't serve a constructive purpose, complaining. It doesn't change the facts, and it doesn't help me feel anything more than victimized.

Which is dumb.

My inner Sherlock is appalled.

Oh well. Disappointment is one of my all-time least favorite feelings. Don't like to feel it, don't like others to feel it. This is at the root of a lot of my anxiety in the world, I think. I've built an entire avoidant personality around never being disappointed, and have spent a lot of time twisting myself into a shape that runs the least risk of disappointing others.

Talk about exhausting. Talk about bland as hell.

It's boring, being a person who never risks disappointment. Gotta do something about that.

_____

Well, I've no idea where that came from, but there it is. I've turned my rejection from the migraine trial into a quest not to be boring.

That seems reasonable, no?

I do have to admit that whenever something major happens to me-- something with a big emotional impact, which happens so, so rarely-- there is always a tiny part of me that thinks, This is what real life feels like. This is what it feels like to be a real person.

Those moments, while often painful, are always a little bit exciting for that reason. I'm doing it, I think. I'm having a normal, reasonable, in-the-moment reaction. I am feeling my feelings right now, as I'm having them. I'm acting like a legitimate human.

On the other hand, the breathtaking rarity of these moments means that they tend to highlight how very unfamiliar I am with acting like a legitimate human. It's hard not to notice how completely foreign it feels.

Sherlock, you do your job well, my friend.

_____

I told Dr. Oz the other night that I've been feeling very triggered lately, without knowing why. My skin feels all raw and crawly and I've been very on-edge.

During the course of the conversation, it clicked: I got a new bike and trailer for hauling my little girls around, and I've been riding it on the street, which is something I've not really done before, and I feel a bit unsafe.

I feel exposed on the bike. I feel vulnerable. And I feel it in a way that hits very, very close to home. I'm a cautious rider, and my hyper-vigilance is in full swing whenever I'm on the road, scanning for obstacles, threats, pedestrians, car doors, whatever. I am constantly braced for impending emergency. 

But it's the exact same situation that occurred to me after my car accident, magnified by a few degrees: you can be doing everything right, following all the rules, and still, something can happen to you. Accidents happen. When you're on a bike, an accident is even scarier, because you're not protected by a steel frame and a seatbelt.

Surprise, surprise: feeling physically unsafe while operating a vehicle on a street with other vehicles around me freaks me the fuck out. Or at least, it freaks my lizard brain out. The rest of me is working through it.

There are a few mitigating factors. I live on a smallish island, where there's not a lot of traffic and the speed limit is a strictly-enforced 25MPH. That's an enormous help. There are also bike lanes here and there. I wish there were more, but I'm grateful for the ones that are there.

I also used to ride a Honda Elite, so I'm familiar with the indifference car drivers often show to people on bikes and cycles. I'm glad I don't have to learn that on top of the rest of it right now. I feel prepared for that, although it certainly triggers the hyper-vigilance.

One thing that will help me with this is time. I'm a novice cyclist. I'd be a little uncomfortable until I learned the ropes under any circumstances. So I know that some of my unease will fade. There are free bike safety classes offered monthly in my community, and I'm going to take one.

<I just went and registered for it. August 8th. Done.>

Those things will help. Part of this reaction is normal. It's also normal to be extra-vigilant when you're on a bike, and to be safety-conscious.

That's what makes this kind of difficult to parse. I'm not sure where the line is. How much of what I'm feeling and doing is appropriate, and how much isn't? At what point does my lizard brain take over?

I don't want to put myself or my kids or anyone else in danger by riding a bike with forces beyond my direct control trying to take over my brain.

I'm keeping up with it, though. I'm working on the "time-and-familiarity" part. Practice makes perfect, right? And really, there are few urban areas more conducive to this little experiment than mine, so it's a great place to be doing this.

My goal is to stop driving my car on the island except during extreme weather. It's small enough here that this is absolutely doable. And even though the actual travel takes around twice as long on the bike, we're talking about 10 minutes instead of five to most of the places I go. It's only a 15-minute drive across the whole island, end to end.

So this whole bike thing has turned out to be a little bigger than I thought it would be. It's giving me more than just a physical workout, apparently. It's a good thing. I feel like I can work with that, even though it's a little scary, emotionally and physically. 

And even though it took me a couple of weeks to figure out what my lizard brain was up to.

In other news: I'm looking for a cool bike helmet that doesn't look like some sort of alien spaceship landed on my head. Does such a thing exist?