Saturday, March 31, 2012

The Persistent Demon

It's weird, how difficult it is to write about this.

I have mentioned the migraines before. Most people who know me well know I get them, and get them often. Readers of this blog know I've been getting them more frequently these past several months, triggered by the therapy in some mysterious way. They are not really something I can hide.

But there's more to them than just discomfort and inconvenience. There's a whole history, a pathology, a legacy of shame and guilt built around them that I can't seem to shake no matter how hard I try.

I've always been a headache person. I had frequent, powerful headaches (migraines even then?) as a child, which were traced to food allergies and treated through dietary modifications. This worked, to some extent, although I remained prone to headaches in general.

The regular, monthly migraines didn't start until a few years after the accident, when I was about 26. They seemed to be connected to my menstrual cycle, so were categorized as "menstrual migraines."

(Future rant topic: the tendency for medical professionals to relegate "female troubles" like this into the "get over it, you hysterical idiot" category, which I hereby dub YWS, or "Yellow Wallpaper Syndrome." Thanks, docs.) **

Clearly, there was more to them than mere hormones. I know that now. Besides my cycle, I am also triggered by muscle tension in my neck and back, by stress, by sinus trouble, by alcohol, by roller coasters, by therapy sessions, by writing this blog, by thinking about therapy or writing this blog, and now I'm casting an inquiring eye upon dairy products, citrus, caffeine, and sugar. 

(How about AIR?! Is OXYGEN now a problem for me, migraines?! WELL?!)

But migraines are tricky and mysterious-- not much is known about them, and while there are medications that can help control them, there is no cure. 

A few migraine facts for you to ponder: 

  • "Severe migraines are classified by the WHO (World Health Organization) as among the most disabling illnesses, comparable to dementia, quadriplegia, and active psychosis." (see link above for all citations)
  • Migraine sufferers are 3 times more likely to have depression than healthy people, and are also more likely to attempt suicide.
  • Women are about three times more likely to have migraines than men. Coincidentally (or not), migraine is "the least- publicly funded neurological illness relative to its economic impact." (YWS, anyone?)
So, serious. It's not just me-- these things suck.

But no matter what my intellect (and the WHO) tell me, it's embarrassing to have chronic, debilitating headaches. At least, it is for me. I fear it looks like I'm faking or exaggerating (a residual from a sickly childhood, wherein I sometimes did fake it), or like I'm complaining, or like I'm weak and can't handle a little discomfort. 

And then there's the guilt. I feel terribly guilty, like I'm forcing others to accommodate me. I don't like to ask for special dispensations. I don't like to put people out. I don't like to need help.

I don't like to need. And I certainly don't like anyone else to know it if I do. I think that's what it really comes down to. And yeah, I kind of know what's going on there, and I'm gearing up to tackle THAT little piece of fun in my next post.

So shame, once again, rears its ugly head. Having a migraine is somehow shameful, something to keep secret and suffer through in silence, and giving in to it and letting it impact my life (missing work, changing plans, having to lie down in a dark, quiet room) feels like a coward's retreat.

Still. After having one at least once a month for almost 15 years.

Migraines are also scary. Severe pain is scary enough on its own, but chronic pain, pain you know is coming and can't stop, is scary on a whole other level. You're afraid because you're helpless to avoid the pain, and then afraid of the helplessness itself.  

I am, I mean. I should say "I" here. I am afraid of being helpless against this. I am afraid of being helpless against anything.

And then, once the next episode becomes inevitable, it's a constant race against the clock: when will it start? Will I choose the right medication, and medicate it in time to keep it from getting bad? How bad will it get? How long will it last? What if it happens when I'm away from my medicine? What if the medicine doesn't work? When will it come back?

This anxiety is a constant undercurrent in my life. It's a form of claustrophobia, being trapped in a body that hurts. Sometimes I feel like I'm suffocating in my own skin. I can't imagine living the rest of my life like this.

Last summer, when the migraines began to change in nature, I was really encouraged. They actually became more frequent-- I have added a new and very sensitive trigger, with this therapy-- but they were much less intense and easier to control. 

More importantly, I'd removed so much of the fear element, with the knowledge that they are at least partly psychosomatic-- meaning that there is an emotional component, one that can be altered and maybe even removed. I had hope for the first time that I could resolve these headaches for good if I kept at the work.

I still think so. I still really, really hope so.

But for the past two or three months, the migraines have become even more frequent. These days, I have some level of migraine pain more often than not. Usually it's just lurking around the edges of my consciousness; an uneasy tingle in the scalp, a worm of nausea in the gut, eyes that struggle to hold focus, the occasional stab in the forehead. But this is enough to keep everything on high alert, and to set off all the same alarms that a full-fledged attack does. 

It's like walking around with a grenade in your pocket, hoping you don't jostle the pin loose. Every day. Every fucking day.

It gets to be too much, at times. I get tired of the strain. But I've been trying to keep the long view, knowing that if I can impact the migraines for the worse, I can probably also impact them for the better, and as I reduce the frequency and impact of the emotional triggers of the PTSR, I really do believe I'll reduce the frequency and the impact of the migraines.

I have to believe it. The alternative is just unthinkable.

But it's gotten harder, lately. The last two major episodes have been absolutely epic. The one I told you about already, one of the worst ever, was frighteningly intense but mercifully short-lived; the worst of it lasted about six hours. For me, that's a lucky break.

The second happened the weekend I was in Napa (it began while I was writing the previous post), and lasted four days, during which I had some of the worst and most persistent nausea I've had in years, which pretty much just ruins everything. 

And. most alarming of all, my meds stopped working.

I'll pause here and back up a minute to remind you that in addition to the migraines, I've also struggled with major depression for years. This is common with PTSR and might even have been something I was prone to anyway, but it's not something I've felt comfortable talking about freely before.

I'm uneasy about doing it now, too, but it's relevant here and it's part of this condition and it's not something I want to gloss over. I want to be as honest as I can about what is happening to me.

I'm also really good at compartmentalizing it and putting up a good front and acting normal and together when I'm actually crumbling into tiny, claustrophobic pieces on the inside (I can feel myself pulling back right now, my language getting more remote and academic, my tone more impersonal; protect, maintain, oh yeah, I am good at this), so a lot of you might be surprised to hear this.

My depression has been fluctuating quite a bit during the therapy, as you might expect, and has been on the rise for some time now, and this change in the migraines was sort of the straw that broke the camel's back.

So I went to the doctor. I got some new migraine med samples, an anti-nausea med, a muscle relaxant. I can attack the next ones from all sides. I am holding one at bay now, in fact, with one of the samples. So far, so good.

And I also asked for anti-depressants. 

It's my second foray. The first was an 18-month stint of Prozac, 10 years ago. In conjunction with therapy, it was the best decision I could have made at the time and was very effective. This time, after holding off for 18 months while I got this EMDR treatment going and have entered into the world of PTSR recovery, I'm finally accepting the help.

I've needed this for a while. I'd convinced myself I couldn't do "the work" if I went on anti-depressants. Now I'm realizing I might be able to do it better with them. I'll have more focus, more energy, more motivation. I'd convinced myself I should be able to muster those on my own. 

I couldn't. Because when you're chemically depressed, you can't.

Depression is an insidious little demon. Its number one goal, as I've seen so clearly in others and am ruefully noticing now in myself, is to sustain itself. It is a master of self-preservation. Depression wants to live and thrive. It doesn't want you to feel better. It does whatever it can to keep you from taking action against it.

Depression tells you, "You're too tired to exercise," when exercise is exactly what you need to energize yourself. 

Depression tells you, "You're too busy/preoccupied/sad//unsocial to leave the house or talk to friends," when social connection is exactly what you need to bring you back to yourself and remind you of your support network.

Depression tells you, "The drugs will make you numb and you won't be able to feel anything," when they actually remove the fog and let you see yourself more clearly, not less.

Depression tells you, "You're weak if you take the meds. Only cowards need help," when identifying what you need to heal yourself and taking action, even when there's a stigma, even when you're afraid (especially then?), is actually a sign of strength.

Taking the help is a sign of strength. Showing the need... ahem... okay, talking to self in real time, here. I need to pay attention to this. Imma give this one its own paragraph:

Showing the need and accepting the help is a sign of strength. Remember that.


And that brings us, friends, to right now. I'm on Welbutrin. Day Six. It has a profile that works for me, and none of the side effects I'd hoped to avoid, so I'd really like this to be the drug that works for me. It takes a few weeks to build to full potency, so I won't know for a while if it's right or not.

So far, though, so good. I've noticed that I'm already sleeping more soundly at night. I'm not knocked out or more tired or anything, just the quality of the actual sleep I get is better, smoother, with fewer wake-ups. As someone who hasn't slept more than 2-3 hours in a row without waking, child-induced or not, for over 3 years, this is Noteworthy.

After all the denial and resistance, the outlook is good. I suspect that this, like so many of my self-care decisions, will be something I'll wish I'd had the brains to do sooner.

But whatever. It is what it is, and it's done now. And like so many right decisions, it matters less why or when or what happens, because the power is in the doing, and in the doing, you are victorious.




**If you don't know what the hell I'm talking about with The Yellow Wallpaper, here's a good analysis. The first few paragraphs should suffice, if you don't care to read the whole, nerdy thing.


  1. It's funny how we can talk so easily about most illnesses we have, but depression is often tabu. It's like a virus, virus's want to you to sneeze and spread them as much as possible. Depression wants to perpetuate itself by hindering you from doing the things that might fight it. I like your  description i will try to remember that.

    I'm sad to hear your migraines are getting worse and hope that it is just the dark before the dawn (trust me I've stayed up all night enough times to know that is true:) You are being proactive now, that in itself has to help.I think the way you react to your migraines is exactly the way i would react if i were in a similar situation, you tell yourself that 'i should not worry about this because i can not control the out come', but you carry on worrying anyway!

    I hope one day soon you can look back on all this and realize just how strong you have been and how incredible the adversity's were that you have over come, like standing on a peak, marveling at the view and the distance you have gone.

  2. KateTheGirlWhoLived02 April, 2012 21:05

    Wow, thanks so much for your lovely words, Karen. Likewise, I will try to remember your image of standing on a peak and marveling at the view. That's an inspiring way to think about this whole strange journey, especially during the times when it feels like I'll never even get my head above water, let alone step foot on dry land and climb any mountains.

    One of the great things about writing this blog is that with every post, I'm reminding myself that there is a larger purpose, and ultimately, even the migraines are signposts that I'm moving and changing and getting somewhere. 

    That's what keeps my feet firmly on the path. I'll get there. I've figured out the way to do it, I know I have. 

    And I'm looking forward to marveling at that view!

  3. Sorry about the migraines.  I get headaches, but my understanding is that migraines are unfathomably worse.  Once I was student teaching, and my co-teachers got a migraine at the end of the day.  She had to lie down under her own desk with her eyes shut.  It was about half an hour before she could stand up.  I took her home because there was no way she could drive.  She said it hurt to blink.

    Sorry you're dealing with depression too.  I've had depression since age ten. As you say, there's a stigma against it.  However, by recognizing the problem, working to manage it, and letting others know where you are on that journey, you are helping to mitigate that stigma.  Who knows?  Perhaps you'll inspire others to take action for themselves.  Depression is extremely common, as you probably know, and some of the people you tell may secretly have it.  My doctor once told me, "Depression is the common cold of mental illness."

    There are stigmas against many things in this culture, and they are usually the wrong things.  Ideally, we would stigmatize cruelty and rapaciousness, not illness, race, class, gender, sexual preference, etc.  (Gee, I wonder what state I'm from?  Yes, it's true!  I'm one big regional stereotype.)The good news is, it doesn't matter worth a damn what most people think of us.  Our inner circle, yes, but everyone else?  No.  Also, I really believe that our issues are more common than we think, and that we benefit from sharing perspectives and information.  There's a quote, usually attributed to Joe Ancis, that says, "The only normal people are the ones you don't know very well."  That sounds about right.  

  4. KateTheGirlWhoLived08 April, 2012 08:28

    You and your Massachusetts values. ;>

    You're right about the stigma, and I love the "common cold" metaphor. I wish this was something we could talk about more openly in our culture. The stigma doesn't just keep people from taking action, it feeds the disease.

    From everything I'm reading about PTSD, it seems that it may be just as prevalent, but we're even further from understanding and talking about it in any constructive way. With a decade's worth of returning war veterans in our midst, we'd better catch up quickly.

    And you're absolutely right about how common this stuff is. I didn't know the extent of it when I started this blog, and began my story feeling like a weirdo with crazy problems no one would understand. But so many people have written to me to say this story has touched them, and shared their own version or mentioned people in their lives who are going through something similar. And your own story mirrors mine in some uncanny ways. It's everywhere. It's everyone.

    At this point, I'd really like to meet the person whose life HASN'T been touched by depression or trauma in some way. 

    ...but then again, maybe not. She's probably cheerful and perky and boring as hell. And hard to hear through the sterilized bubble wrap. ;>