Wednesday, July 6, 2016

Proof

Before I tell you what's been happening lately, I should tell you a bit about what happened previously. I've been, shall we say, remiss.

When last we spoke, I was in the midst of integrating the huge changes that took place in my lizard brain last year. As I said back then, integration is a lot harder to write about than epiphany, being, rather characteristically, less exciting.

In other words, this past year has been a lot of me getting used to not being hypervigilant (which looks like... me not freaking out about anything, which is... let's face it, not as interesting as me freaking out about everything, amirite?), and going to neurofeedback appointments but not having major, exciting things happen during them, and going to Dr. Oz and talking about... how little I have to talk about.

I've spared you the agony; I've been boring myself.

But I've regretted not having things to say. It's been more of a lack of certainty about where to go next with this story, I think. After the Big Bang of those releases, I had to face the Big Question: had my story come to an end?

HA HA HA!!! Oh, silly me! If only life were so neat and tidy! Or... honestly, I don't think I even mean that. Because I've missed this: this bog, this processing-on-the-screen, this writing life. I really have. 

Truth be told, if "neat and tidy" means no longer having this connection to you, this story to tell, I think I prefer a bit of a mess.
_____


I stopped my neurofeedback treatment a couple of months ago, just shy of two years in.

This was not by choice, exactly. My practitioner, the marvelous Dr. Q, was relocating her practice to Santa Rosa, CA, where she continues to work miracles upon the hopeful public. But also, I was feeling ready for a break, just to see how I did without her. 

Sort of like taking a spin on the bike without the training wheels for the first time, just to see how far down the block you get.

I am not sure how to report the results of my experiment. On one hand, I am enjoying only going to one regular appointment per week for a goddamn change and reducing my "professional patient" status to relative nil-- for a while I was seeing Dr. Oz once and Dr. Q twice each week, in addition to the various other appointments I managed to accumulate (did I tell you I've had a "frozen shoulder" since last November? WTF?! So that's been another couple of appointments per week for physical therapy and/or Active Release from my favorite chiropractorturer, Dr. John Beall. AND there is a story about kidney stones coming that is going to chill your bones, but that can wait, because THIS! This is big news).

But anyway, yeah, I have spent the past year feeling like all I do is drag myself from one doctor to another, and I'm sick of it. So I welcomed the respite, even though neurofeedback is probably the thing that is most effective for me at this moment in my life.

Well. Okay. Not probably. As it turns out. :/

Since I stopped seeing Dr. Q at the end of April, I've had an upswing in migraines that is troubling. While undergoing neurofeedback, they had dropped to practically nothing, for me-- usually one a month, 1-3 days, very mild and controlled by OTC meds. Over the past two years, I had begun stepping out without my portable pharmacy. I had traveled on planes without triptans in my bag. It was insane, really, compared to the previous decade-and-a-half, how free I'd become.

Since Dr. Q and I parted ways, I've had a few 10-day monsters, like I was having on the regular when we first started treatment. So while we had not yet found a way to train my brain to keep that shit up on its own, we had definitely found a way to hold them at bay.

THAT SUCKS, you might say.

THAT MEANS IT CAN BE DONE, I will reply.

Although, yeah, fuck, it does suck, Jesus, throw me a bone, universe, for the love of Christ.

(Okay, since we're talking about it, I'll tell you the kidney stone story now: in the last 12 months, I have had four. FOUR. And not four little ones, four GIGANTIC ones. Two of them measured at 8mm, one of which is still stuck in my bladder because when they get that big, gravity prevents them from washing themselves out right away. Gravity. Kidney stones so big they have to deal with gravity.

So after this last one, I had my second CT scan of the year to figure out what the hell was happening, and the urologist I went to suddenly went, Wait a second, what medications are you on? and looked at my chart, and then goes, Yep, uh-huh, here it is, that's what's causing the stones, it's the Topomax, which my drug-savvy or long-memory-having readers will know is MY FUCKING MIGRAINE PROPHYLACTIC. 

If you ever doubted, friends, that I am good at keeping my balance on this tightrope above the void and staying, for the most part, positive, you would have enjoyed seeing the doctor's face the moment after he gave me this news, and received my reaction.

I burst out laughing.

I mean. I MEAN. What the fuck else can I do, at this point? And then he goes, "Well, if you can't stop taking the Topomax, we could give you another med to try to counter the effects," and I'm like, "What are the side effects of THAT?!" and he says, I kid you not, "Fatigue."

I was howling. FATIGUE! Of COURSE it's fatigue! That is just. So. PERFECT!

And while we're on the subject, why are side effects never " risk of nymphomania and slenderness?" Why not "mimics the effects of cocaine?" Why never those? Your move, Big Pharma, you jerks.)
_____


Ahem. So. Anyway. Those things all happened. But that's not what I wanted to tell you.

What I wanted to tell you was this: before I ended my treatment with the marvelous Dr. Q, we did a final QEEG. We wanted to compare my brain now to how it was when we started, so we could see how much progress we'd made and what areas I could focus on in future work. Dr. Q has begun to do QEEGs herself in the two years since I've known her, so she performed the test and did the analysis, which means it was in a different format and not a one-to-one comparison, but also that I got different kinds of information than I got last time.

A lot of it, already knew: much has shifted, much has lessened, although much has not and I still show trouble with things like switching between tasks and keeping focus and stuff like that-- things I've always attributed to my overwhelm, but which have lingered even though the overwhelm has been greatly reduced over the past year.

And then, Dr. Q presented me with the piece of information that made everything snap into place. 

It's not exactly a surprise. I diagnosed it myself in a theoretical way in this very blog, way back in the beginning, and I faced the reality of it in these posts, back when I first started neurofeedback. It just got kind of dismissed by the guy who analyzed the previous readings and we left it alone over the past two years, but Dr. Q knew I would want to know, so she fed my data into the National Traumatic Brain Injury Database, and what came back was this:

PROOF:


It's official. I have/had/have had a moderate traumatic brain injury.
That's not the greatest image, I realize. And there are a million numbers on there that I don't really understand and can't tell you how to decipher. But the two graphs and the numbers at the top tell you what you need to know, and are very clear:

My brain shows an 85% probability of having suffered a moderate TBI.

As you can see from the little odometer-looking graph on the bottom of the page, I fall at the low end of the moderate range. Just above the line, in fact.

If I'd been handed a blank graph and been asked to place myself on it, that is pretty much exactly where I would have guessed.

So, how does it feel, you might be wondering, to finally have this proof? This document that confirms what I have felt and validates what I have struggled with and fought against and experienced these past 25 years?

If you clicked the links above and went back to those other posts, when I first discussed this possibility, then you know that I sort of already went through the Big Emotional Hit over it. And don't get me wrong-- it was a big one. It's a big, disturbing, world-morphing thing to think that I haven't had the brain I've thought I've had, all these years; that the challenges I've had that felt so odd, so off, really were odd, really were off. That I really have been climbing a mountain with a piano on my back all this time.

Since then though, I have found it a lot more interesting that despite the piano, I fucking climbed the shit out of that mountain anyway. There's a lot more to be said about that.

And, in fact, that explains my reaction when Dr. Q handed me that sheet of paper, and I saw my TBI finally and formally confirmed, live and in living color, for the first time.

I didn't think, Oh, my poor, damaged brain.

I didn't think, Oh, what a life I have I lost.

Call me an optimist, call me a tightrope walker, call me a denier of the void, but what came to me in that moment was the lightning-strike thought that is a dream-come-true for the person I have become-- the person I always wanted to be, accident or no:  a writer, a woman of words with a story to tell.

I thought: Hot Damn. There's my book.

Tuesday, July 5, 2016

Catching Up With (no longer) Depressed Mode

Bonus points if today's post title makes you smile and takes you back your high school days of mix tapes and High Hair.

I've had a few drafts going for a while now but they have all been out-lived (OUT-LIVED! I SAID IT!), so I'm just going to scrap them and start anew and catch you up on what's been going on with this strange process of integration.

Right after I do this:

WELCOME, ESALEN COMRADES! \o/

My regular readers will remember my trip to Writer's Camp at the Esalen Institute in Big Sur, California last summer, and the world-shifting effect it had on me.

Last week's trip was no different. I had a spectacular time, and reclaimed the amazing community of writer friends I tentatively began there last year, and this time, I'm keeping them. They are mine now. 

And this year, I spoke up a bit more, and I told them about my work and what I've done with this blog, and I've invited them here. 

So, before we proceed any further...

IF YOU ARE NEW TO THIS BLOG:

1. You're going to want to start at the beginning. It's a linear narrative, this story, so it's not going to make much sense to start here at the end and go backwards, or to pick spots out in the middle and try to find your way. I linked the first post in the first sentence of this item and I'll link it again RIGHT HERE

(Pro tip: if you go from the link above and read to the bottom of the post, down below you'll see a link for "Newer Post" which will take you directly to the next post, with no scrolling or searching required-- this is the easiest way to do it!)

Start there. Bon voyage. I'm told it's a decent read. There's thrills and chills, blood and guts, sex and drugs, discovery and enlightenment, and even... spoiler alert... a happy ending or two.

2. Please comment, if you feel moved to do so! Don't worry if it's an old post-- I want to turn this thing into a book and your thinky-writey brains are just what I need. You are TOTALLY THE DROIDS I AM LOOKING FOR.

3. THANK YOU for stopping by! I hope you find it worth your while. I try to subscribe to Pam Houston's rule: "Never waste the reader's time."

Okay, so...

Imma let everyone get caught up, since I've been out of the blog game for many months now, but I will leave you with these topics of my next few posts so you know what's in store for you in the next couple of weeks:

1. A report on this year's Esalen adventure

2. An account of the email I received from a stranger three weeks ago, telling me she'd read my blog and was moved by my experiences because she had had similar ones, since she had survived a plane crash when she was 16 and undergone EMDR therapy when she was 40 and would I be interested in letting her interview me for a podcast her publisher wanted her to do to help market her recent memoir? OH YEAH THAT HAPPENED AND WE ARE GOING TO DISCUSS THE SHIT OUT OF IT HERE.

3. And also: THAT PODCAST IS HAPPENING!

4. And also: I suspect I will have a guest blog post by a plane crash-survivor coming up at some point because OMG she is RAD.

5. In neurofeedback news, I had another QEEG and ladies and gentlemen, we have confirmation of something BIG BIG BIG that you may or may not be surprised to learn.

Integration has gone well, this last year, and the boring part is, I guess, kind of over. Now we dive in again. Time to move. Time to push. Time to see what this newly-integrated brain can do. 

As it has in the past, when I've strayed or gotten lost for too long, the path has come knocking again. I find myself back on my feet, headed in a direction I cannot deny is the right one. Other writers, other survivors, are literally reaching out to me from the void and saying, "Here we are, where have you been, what's taking you so long?"

So it's clearly time to shake the dust off my feet and get back to this blog and write down what is happening to me on this journey.

Time to get going. Time to move. 

Time to live!

Tuesday, November 17, 2015

What To Say?

I'm finding it difficult to decide what to write about.

I have quite a lot to catch you up on; posts have been sparse over the past year, and it's been a big year, progress-wise.

Part of the difficulty, I think, is that most of the progress I've made in the wake of the two major releases I had last winter and spring has been in the integration of those internal shifts, rather than in figuring things out.

Integration doesn't look or feel like epiphany, which is far more exciting and a lot easier to write about. It is hard to detect, a lot of the time. And much more elusive, when it comes to capturing the process in words. In fact, at this stage in my long game, I am much more aware of my work after it's happened than I am while I'm doing it.

If I look back over the last 6 months, I can see it. It's just been... a lightening. A relaxing. A gradual accumulation of confidence and purpose. Something I can only see clearly in hindsight, when I notice how long it's been since I felt anxious, or how little overwhelm I felt in a situation that at one point, not so long ago, would have left me catatonic.

That perpetual, insatiable internal engine was switched off last spring, and at the time, I'll admit, it was anti-climactic. I guess I expected everything to suddenly click when it happened. I'm not sure why, in hindsight-- mental work is rarely so sudden and drastic. The revelation is sometimes flash-boom exciting, but it is always followed by the drudgery of putting the insight into practice.

But somehow, for this, I expected it to feel more like shaking off the restraints and flying off into the sunset, or something.

Well.

It wasn't like that. In fact, if anything, things got pretty boring, right after.

It wasn't until much later that I realized: boring, in my particular circumstances, was good!

Boring meant that I no longer had a hyper-vigilant internal monitor running around in my head, creating chaos and craziness at every turn! Boring meant that my brain wasn't in constant turmoil! Boring meant that I was sleeping deeply at night, having actual dreams, waking up feeling... what was it? Something I barely had a word for: rested!

Boring, in my case, was actually very exciting indeed.

It was confusing, though. It still is. There is a detectable increase in bandwidth, but it's not like I had the skills for using it just standing by, ready to jump in when opportunity struck.

Ha. That would have been some really excellent foresight. :/

No, alas, instead: I just often find myself marveling, after the fact, that whatever just happened didn't completely freak me out or overwhelm me. The bandwidth is there to absorb what would once have been overflow into the anxiety zone, but I don't yet have the habits I need to use it proactively, if that makes sense.

I also continue to mark my progress in two other ways: my (still) ongoing Effexor ramp-down, and my neurofeedback work (see also here, here, and here).

I am now at 22mg of Effexor a day, down from 150mg. My progress has been slower than I'd hoped, because I've had a couple of setbacks along the way-- a couple of times I dropped too much at a time and had to go back up, or had to wait to bounce back before dropping again. Each of those experiences made me reluctant to drop my dosage the next time, because they were unpleasant and unpredictable and I can't afford to ride the roller coaster.

But I've felt pretty stable for a while, and have become conservative with my drops, sticking with 10% each time and waiting several weeks in between changes.

So. 22mg it is, and after Thanksgiving I'll go to 20mg.

This ramp-down is really made possible by the neurofeedback. I was just talking with Dr. Q about it this morning, and I really don't think I'd be doing this without her. The insight I get into my brain function while this is happening is invaluable to me, and feels like a real safety net.

I also think the neurofeedback is helping my brain to adjust quickly and far more thoroughly than it otherwise would have to each dosage change. It doesn't allow my brain to fly out of whack or lose efficiency as I go. Once again, neurofeeback proves itself to be the final piece to my brain-work's puzzle. I honestly don't know where I'd be without it.

Or, I do: trapped on medication, muddled and foggy, and still awaiting the breakthrough that changed the course of my PTSD recovery.

I firmly believe that.

So I look at my behavior, I look at my med levels, and I look at the changes I've felt-- and seen in digital real time-- as a result of neurofeedback, and I think: yeah. I'm doing this. I'm righting my ship and finding a way out of here.

It would be nicer if there were fireworks and banners and ticker-tape parades, sure, but in the end, out is out. I'm getting there. And just as slowly, I'm figuring out what to do with myself, now that I'm here.

As a matter of fact, I've got a few things in the works. I am lucky: I certainly don't lack for inspiration.

I will tell you about a few of my inspirations-- and a few of my plans-- in my next post.

Stay tuned!

Monday, September 28, 2015

Passing the Torch

I'm back.

I have missed you.

So much has happened.

Let's catch up, shall we? Where did we leave off?

Oh, right: Esalen.

I went there because of Cheryl Strayed, as I told you last time. Her writing as Dear Sugar was what brought me back to writing again after so many years. It inspired me to start this blog. In her columns, I saw the shape my writing could take-- how a post could tackle a difficult topic, delve deeper and go darker, and push through to the light on the other side.

Her words resonated with me beyond their content. I felt her speaking to me, one writer to another: this is how these things are done. Watch and learn.

And I did. I think her writing felt so powerful to me because it mirrored the way I already thought, and it validated that thing I so desperately needed validated at the time: my right to speak from my own earned wisdom. 

I didn't trust my own eloquence then. I didn't believe I had the right to assume authority over anything-- not even my own experience. And I didn't understand how profound the connection could be between a writer and her audience when she allows the personal to transcend to the universal in her writing.

I trust and believe and understand those things now. I learned them from Cheryl. And from myself. And from this blog, and from you.

Five years ago, Cheryl Strayed's writing helped me change my life. I went to Esalen so I could thank her for that in person.

(And I did. Awkwardly. Mortifyingly. But I did!)

I also went to Esalen to see what would come next, for me. The workshop was called "The Story You Have To Tell," and I've been telling quite a story for a while, here, haven't I?

I thought I'd go and figure out the next step in bringing this story to book form.

I may have. Or. I don't know. I met some people, and I forged some connections, and I think at some point things will lead me forward, as they always have and I trust will continue to do.

But even better: I met Pam Houston (Cowboys Are My Weakness; Contents May Have Shifted), who taught me a few things that will carry me through the next few years of my writing life.

Pam spoke to me right where I am now, as a writer. Where Cheryl helped me to see shape and impetus, Pam offered insight into depth and breadth and richness that appeal to me in this moment, not as a writer getting started but as a writer in progress. 

She had amazing things to say about maintaining one's practice-- something I've struggled with over this past year (until now-- I think I've managed to put all the pieces back in place to have an even more robust and regular practice than before, so this should bode well for us, faithful readers!). She said so many things that I recognized instantly as meant for me, if that makes sense: sort of "Oh, this is why I'm here" moments that were so satisfying and perfect and worth every penny of admission.

There were three other writers on the panel, each of whom also had at least one resonant gem of writerly wisdom that I've carried with me and thought about daily ever since that magical week: Samantha Dunn (Failing Paris), Steve Almond (Against Football: A Reluctant Manifesto) and Alan Heathcock (Volt). 

I even shared a joint of marvelous homegrown Esalen weed with one of them. And you know how I am about pot, so you know that's saying something. Or maybe it was just that great of a writerly rapture we were in. Ha ha.

And all of this only describes the panel. The other attendees-- my fellow students-- were equally wonderful and wise and many of us have stayed in contact and even forged closer relationships since our Esalen week ended. I joined an amazing community there. I don't think I can quantify all that it has brought and will continue to bring to my writing life.

I'm going back next year, too, and I'm bringing a dear friend. It's that kind of place. You go back. You bring people. You share the gifts. You spread the love. 

It's how art works, at its best: a passing of the torch from one heart to the next, connecting, reverberating, lighting up the world.



Saturday, July 4, 2015

The Story You Have To Tell

Hello, Dear Readers.

I have not meant to neglect you. It has been so very hard, this past school year, to find a rhythm that works for my writing schedule.

This is about to change.

This past week, I went to Esalen in Big Sur, California, to attend a 5-day Writer's Camp workshop called "The Story You Have To Tell," led by a writer who was hugely influential in my decision to create and my choices in writing this here blog, Cheryl Strayed

You may have read Cheryl Strayed's novel, Torch, or read her memoir or seen it on the big screen last year: Wild. For my money, though, her best work was as the anonymous Dear Sugar advice columnist for TheRumpus.net, where she wrote, among many other wonderful things, the column that you will find at the following link-- AND SHOULD READ AS SOON AS HUMANLY POSSIBLE, but somewhere discreet and with a box of tissues handy:

Dear Sugar #78: The Obliterated Place

That right there, friends? That is a writer's masterwork. That is perfection on a page. That is immortality in print. That is why I found my nerve and paid my money and took myself to Esalen next week: to sit in Cheryl Strayed's company and commune with her over words that make a difference when it matters.

The great news is, that was merely the beginning. 

I have much to tell you about my adventures at Esalen. This post was originally written the week before I left to tell you I was going, but I didn't get it out in time, and then I wasn't able to send it while I was there. I'm sending it now to tell you that I'm back, and I'm getting a post together to tell you about what's happened lately and what happened at Esalen and what will be happening in the coming months.

It's gonna be good. I've got a lot of living to do.



Saturday, May 2, 2015

Release #2

Wait, hold on, I just realized that title sounds kind of gross...

:>

But I digress.

So guess what happened in therapy a couple of weeks ago? Yep. ANOTHER RELEASE!

It was another completely unexpected, out-of-the-blue moment for me that Dr. Oz identified as ripe for releasin'. 

Or so I assume.

Here's what happened: the day after I wrote my last post, in which I told you that I hadn't experienced any negative side effects from my drop from 50mg to 40mg of Effexor, I experienced some negative side effects. I had a day of extreme drowsiness and disconnectedness, which is disturbing and difficult to deal with for both me and my husband.

Ugh. So much for that theory.

After that day though, things seemed to improve pretty quickly. It just sucks because it's unexpected and difficult to predict and terribly hard to combat and all the things that I can't really afford to have happen when I'm trying to care for two small children. 

This is not what I want. This is what a gradual ramp-down is supposed to help me avoid.

So... back to the drawing board. New plan. They're all just shots in the dark, really. Throw a dart at the wall, hope it lands somewhere cool, and go with it. I want to be as aggressive and as quick as possible about this without losing the smooth ride. That's what I want. How I get it is anybody's guess (and I do mean anybody's, and I do mean guess, because there is no such thing as a "known known" when it comes to how to do this properly, other than to listen to your body, trust your gut, and take your time. DO NOT LET ANYONE CONVINCE YOU OTHERWISE, NO MATTER HOW MANY DEGREES THEY HAVE), and since I'm the one who feels 100% of the impact and the effects, I'm declaring myself the sole authority on What To Try Next.

I decided to back off a little. I found myself feeling a bit more cautious, once again, about making a move. It's just too scary to mess with this stuff.

So instead of jumping right into a new dosage, I decided to wait. Let my body settle at 40mg. Take my time. As much as I am anxious to be done with this stuff, taking my time has never let me down as a tactic. It really is better to give myself time between steps down.

Alas.

So I waited another week and a half. Then, two weeks ago, I sat down to make some new pills, and I was planning to shift down from 40mg to 35mg.

Just a shade over the recommended 10% reduction. I'm going to try reducing in increments of 5 instead of 10 for the next 3-4 times to see how that goes. It will become a larger percentage of the whole as I go, but my overall dose will be so much smaller that I'm hoping the impact will be less noticeable.

We'll see.

Anyway, I sat down, got out all my weighing and measuring and pill-packaging stuff, and got to work. 

I dumped most of a capsule out into the little cup on my scale, removed tiny little packed-powder beads one at a time until I'd reached the desired weight for my dosage (0.115mg, according to my scale, which is not the easy-to-understand-and-verify 40mg that I'd expected, because why should any of this be easy or intuitive and make sense? I mean, COME ON! It is, however, the typical weight of 40 of the tiny little beads inside a capsule, so... I guess wishes do come true. Ha ha. :| ).

When I hit the magic number on the scale, I poured the beads into one of the 2000 large, clear empty capsules I bought (they only come in massive quantities like this. So. Um. Capsules. I have them), zeroed out my scale, and started over.

The next time around, something strange was going on.

I poured a bunch of beads on, and the pile seemed a bit bigger than usual to get up to my magic number, looking at my digital read-out, of 1.15.

And wait... I thought it was 0.115? Hmmm. Well, the decimal point is definitely where it belongs, because going from the amount in my weighing cup all the way down to 0.115 would be completely wrong. So I must have been mistaken.

So I got to 1.15, then poured the beads into a capsule.

Huh. That capsule seemed much more full than the previous one. That can't be true. They weighed the same!

I held the two (blessedly transparent) capsules side-by-side to compare them.

WHAT. THE. FUCK.

The second capsule was about TWICE as full as the first. I had just weighed them both, seen the same number on the read-out, but one was twice as full as the other.

This, my friends, made no sense.

I poured the first capsule back out into the cup, and the scale informed me that it weighed 0.60. 

What.

I lifted the cup up and down a few times, shook it around, put it back: 0.60.

The FUCK.

I poured it back into the capsule and dumped out the second capsule: 1.15.

Oh no.

At this point, it would probably occur to you to go and get a pill from the batch I'd made the previous week and compare the two, to see what I was dealing with. Something was wrong, but one of these capsules had a good chance of being similar to the ones I'd been taking, right? So I could find my baseline and correct whatever wrong had been done from there.

Yes, good idea. This idea occurred to me too.

The problem, however, with this good idea, was that I had taken the last pill from that batch that morning, and thus had nothing to compare these pills to.

Oh. Oh no. Oh shit. What the fuck have I done?

I'm not gonna lie. I was panicking.

Because this was a huge mistake I was looking at. The first pill had looked correct. And I'd weighed it, and it had been correct. And now it was completely wrong.

I dumped each pill out again, in turn, and meticulously counted the contents. The first one had the right number (40), but the second one had the correct weight, and that was what I'd been going by for the last few weeks.

Had I been that egregiously wrong the first time, and been dosing myself much higher than I thought all this time?

So if I went with the 40-bead pill, would I be inviting withdrawal symptoms?

Should I still lower my dosage, now, then? And if so, from where? Drop to 35 beads, or drop to 1.10 mg? Which was correct?

Although the number of beads was what I wanted to go with, I knew the weight was what I should go with, since this was what I'd been using as my measurement for all my pills for the last several weeks. I only thought the two correlated, apparently.

Oh my god.

I sat there for 30 minutes or more, panicked, going back and forth and back and forth in my head. What do I do? What have I done? How did I make such a horrible miscalculation, and when?!

And then: inspiration!

I remembered that the week before, I'd taken a picture of my bead-counting setup, with the scale and the beads and a few capsules and stuff, for this very blog. I hadn't posted it yet, but I'd taken it, and it was on my phone.

Maybe... just maybe... there would be something in the picture I could reference.

So I looked it up. And found this:

Salvation lies in this photograph. Tell me when you see it.

I was relieved to note that it appeared that I had a complete pill in the measuring cup when I took the pic, as evidenced by the weight on the read-out. And the photo was clear enough that I could count every bead, which I did. There were 40.

So: what the fuck was going on?

OH. HOLD THE PHONE.

Is that a "0.115" I see? Why, yes! Yes it is! Not 1.15, as my scale is telling me now, but 0.115, like I thought in the first place.

So what gives?

Well, as you may have suspected, and as I, owner of this bloody scale, should have remembered but did not, it is possible, at the touch of a button, to switch between units of measurement on this device.

For example: if you accidentally touch the button between making pills, your units of measurement will switch from grams to carats, and what once read as 0.115mg will now read as 0.60c, but you won't notice the c because you will be too busy

HAVING A FUCKING HEART ATTACK.

Oh. My. God.

It was at this point that the real panic set in. My quads and arms started off-gassing like crazy, even though I don't get that feeling as strongly as I used to. It was as powerful as it gets these days, like being riddled with a low current of electricity, and it didn't stop for about two hours. 

I kept realizing that I'd been about to dose myself with 100 carat pills-- or something close to twice what I'd been taking, maybe more-- and I probably wouldn't have noticed it on the way up, but I definitely would have noticed it if I corrected my mistake at the next step-down and had major withdrawal symptoms all over again.

Although I wouldn't have understood why.

I could not stop freaking out.

At the same time, I felt SUCH! UTTER! RELIEF! that I hadn't been so completely reckless and oblivious to such a major error. Hoooooly crap, I'd really been doubting my judgment for a while, there.

When in fact, what I should have been doubting was my ability to read a scale monitor. O_o

In my defense: I'd forgotten that was an option. And making those pills is close, intense work. 

Still. Whew!

So anyway. That happened. And the next night, I was in Dr. Oz's* office, telling her about it. 

What struck me most profoundly about the whole affair was the powerful, visceral reaction I had to it, especially after the crisis was over. I mean, I well and truly panicked, and my body was surging with adrenaline. It seemed... surprisingly strong.

"Well," said Dr. Oz, "you've been pretty traumatized by this medication. You've really been knocked around by this ramp-down. So it's not surprising that your body is responding to it like a threat."

Well, yes. In case I haven't made it clear in this blog, I really have been knocked around by this ramp-down. I don't always tell you all the details, especially when they sound like, "Felt like shit today. Yesterday too. Tomorrow will probably suck." But there's been some of that, except worse, because those days have come when I was expecting to feel better.

Oh, Big Pharma. You are a cruel, cruel master.

Anyway. I told Dr. Oz about the last vestiges of my cold fire, and how relatively powerfully I had felt it the night before.

"Do you want to do another grounding exercise, and see if we can release what's left?" she asked.

OH GOD NO UGH PLEASE NO NO NO- "Sure."

We did it just like last time: Start at the toes, connect with the tension, don't try to act on it, just notice it, observe it, report it.

I was able to relax much more quickly this time, almost like dropping into a hypnotic state (I noted at the time, then noted that I was noting, noting as well that this likely meant I was not in a hypnotic state, then noting additionally that all the noting I was doing was not what I was supposed to be doing and FOCUS PLEASE.

Yeah, this is why I hate this stuff.

But I did it, I relaxed, I listened, I observed, I reported. My heels had risen off the floor again, body tensing, but my arms felt no urge to rise up in front of me. Instead, I had my palms on the couch beside my thighs, and they rose off the surface while my fingertips stayed in contact, making little stiff tarantulas with my hands.

Not sure what that was about, but I wasn't questioning just then, I was observing.

"Is there a movement that goes with this?" Dr. Oz asked. "Does your body want to move at all?"

"No." It didn't. I was disappointed, thinking it just wasn't going to happen like last time, but I kept talking.

"My abdomen is tense across, like there's a band going from one side to the other. My forearms feel really tight. I-- wait..."

As I spoke, my head had begun to tip forward, and there was something different about this motion. I don't know how to describe it... it just... it wasn't me doing it.

"My coming forward," I said, and for a moment I tried to help it, move it consciously, and I had the strangest sense of having jumped the track; as if my head had been being led by a string and had been pulling slightly against it to feel the tension, and by moving it myself, I'd just created some slack in the line and lost the direction.

So I relaxed back into it again, not trying to consciously move, and whoa, there it was, that line-tension again, and my head continued to move of its own volition.

It knew where it was going, and it didn't need my conscious brain to get it there.

"Okay, now my body is curling forward too..." I felt myself leaning forward in my seat, slowly, slowly, following an invisible trajectory, head forward, chin to chest, shoulders and upper body curling toward my knees.

And then... forward motion was over, and my body began to move backwards from the waist, spine uncurling upwards and backwards until I was back against the couch again, releasing tension as it went from my toes up through my legs and beyond, and my head tipped backward and came to rest on the backrest.

Tension: gone.

I opened my eyes and looked at the ceiling. The sense of contrast between before and after wasn't nearly as profound as it had been the first time around, because the tension itself hadn't been nearly as high, but it had been just as surreal. It really felt as though my lizard brain had just taken over and gotten some long-overdue work done. 

And what's more, if you put the two release episodes together, you'd have seen, in slow motion, my body flinch backwards, try to pull up my legs and hold up my hands to protect myself, and then get thrown forward and back in a classic whiplash movement.

Like you might see if you observed, in slow motion, a person involved in a car accident.

_____

There is more to talk about. These episodes have changed the landscape quite a bit, but there's still plenty more to be done and to report to you as it happens. But the sense of having accomplished something enormous sits with me. 

It seems like it had to have been the hardest part of all of this, and at times I've thought it would be, but it wasn't: it was the surgery. The surgery is difficult and risky and beyond your immediate control, ultimately, but it's only one aspect of the recovery.

The rest-- the greater portion-- is the work: the therapy, the preparation, the rehabilitation, the prevention, the maintenance. 

I've done that. I'm doing that. I will continue to do it for as long as-- and in whatever form-- it takes.



Saturday, March 28, 2015

Goodbye, Effexor: A Conscious Uncoupling

I was just looking back through my posts over the past few months to try to find the one where I told you the really awesome neurofeedback developments I've experienced, and I couldn't find it.

Well, duh: it's because I haven't written it yet.

Behold, true believers! I've got some pretty astonishing news!

You may recall how neurofeedback works, and what it showed me about my own brain, last May and June when I first began. I've linked those early posts here in this paragraph for you to go back and reread them if you like-- I recommend the refresher. I needed it myself, because WHOA, have things changed since then!

A couple of months ago, we did a little 5-point test, sort of a mini-Q, where several points on the brain are monitored at once to see how they compare to a general database of healthy brain function.

Just a little progress report, you know?

Okay, this was a limited test, but the circumstances were a repeat of the first time I took it, so the results can be compared to those, too. And the results were pretty profound: 

  • My ability to switch between states, which Dr. Q said before I seemed to really struggle with and which probably left me constantly feeling "foggy," (ah, if only she knew!)?   NORMAL!
  • Those markers for Chronic Fatigue Syndrome, Fibromyalgia, and/or a major sleep disorder?   GONE!
  • My general inefficiency and slowness of processing, caused by the old rerouting from the TBI and the hypervigilance and general misuse of resources?   MUCH IMPROVED! (not quite in the normal range yet, but much closer than before!)
  • Get this: My anxiety? My "At levels I've only seen in veterans recently returned from combat" anxiety?   GONE! (Not "Better." Not "Low Normal Range." Smack-dab in the center of "Just-Like-Everybody-Else NORMAL.")
  • And finally: my depression: Barely any movement at all.
Well.

First, a little celebration!

I'm sleeping better than I have in years. I virtually stopped taking lorazepam within 2 months after I began seeing Dr. Q, even though my PTSR was still in full effect. I am thinking more clearly, operating more effectively, and just generally feeling better in every way.

I don't think I can overstate the impact neurofeedback has had on my life. It feels like exactly the perfect component for me, and exactly the right time in my recovery. I really do feel like it is working to sort out and put in place all the pieces I've worked loose in my work with Dr. Oz.

Especially now, since the release

As I think you'll agree, if you've been reading along for any length of time, I was absolutely primed for this therapy, and it really is working accordingly. My ducks were in a motherfucking row, and boy, is it paying off! I can literally feel things falling into place sometimes.

It's amazing. Neurofeedback is amazing. 

And you know what else? Painstakingly setting up the dominoes so that you can finally watch them fall is pretty freaking amazing, too.

\o/

BUT ANYWAY!

I think, if you'll peruse the list of test results above, that you'll notice that one of these things is not like the others.

Yup. The depression. Hasn't moved much at all.

I actually think this is because of my antidepressant. I think it has, in fact, been doing its job of keeping that part of my brain operating in a stable and consistent way.

The problem with that is that the rest of my brain has been stepping up its game in a dramatic, dynamic way.

I am now able to feel this discrepancy. I have been feeling over-medicated.

My antidepressant has been bringing me down.

So, last month, I began to ramp down from my 150mg of Effexor.

I began to notice an improvement almost immediately. Effexor has a very short half-life, which means you get almost instant feedback from it, which is a rare thing with antidepressants. This will become important in a moment, so remember this detail.

The extended-release version of the drug that I take comes in 75mg capsules. That's it. So any ramping down is going to involve big, jarring jumps or painstaking capsule-opening and bead-counting (because why should pharmaceutical companies make it easy for you to get off their meds? They don't want you to get off their meds!).

This wouldn't be a problem if ramping down were as easy as one's GP tells one it should be: "Just drop to 75mg for a week, starting tomorrow, and then stop after that. If you have any discomfort going from 75mg to nothing, try going to 75mg every other day for a week, and then stop. But you shouldn't have any problems."

I've found, though, that the laymen know best when it comes to these things. Discontinuation symptoms are wildly underreported (understandable, in a system designed to keep us on these meds, not get us off them). So when I ran into trouble with my ramp-down, I turned to the forums for help.

Oh. The trouble: I did have some discomfort going from 150mg to 75mg-- it took me about 2 weeks to stop feeling spacey and half-asleep-- so there was no way I was going cold turkey. 

I followed my doc's advice and went to 75mg every other day, there apparently being no smaller increment available to me (they say there's a 37.5mg capsule, but I've never seen one). 

The first two days I skipped, I definitely felt it-- "brain zaps," a little jittery and spacey, but otherwise fine. No emotional fallout whatsoever, nothing I couldn't manage. Then it evened out and I felt fine.

Not just fine. I felt better. Less was definitely more, where Effexor was concerned. The less I took, the better I felt. 

After a couple of weeks of that, I decided to go to 75mg every third day. 

The first time I skipped that second day, I was vigilant all morning, watching for symptoms. I felt fine, mentally, which was good. By noon, I felt a bit shaky, but still fine.

By 2pm, the zaps had started. By 3, I could barely keep my eyes open. was disoriented and confused. I was agitated. I kept falling asleep. And my body hurt, but in a way that's hard to describe. 

In a "there is something seriously, dangerously wrong" sort of way.

In a "my body is attempting to function without a vital element" sort of way.

In a "this must be what dying feels like" sort of way.

In a "this isn't something to push through; this is unsustainable" sort of way.

I lasted as long as I could. And then I took a pill. I have small children to care for. I can't mess around with my brain like that.

My husband, during this frightening little episode, had gotten online and found the forums and begun to research how the hell to get off this shit.

The people there: they've been around the block a few times. In their comment signatures, they list their medications and their ramp-down protocols. Some of them have taken 10 years to ramp down from extensive quantities of psychotropic medications.

It's not our world, this world of meds.

From the forums, I learned some basic rules of thumb:

1. Reduce your dose by 10% per month, as a general guideline.

2. Do not ramp down by skipping days between larger doses-- it's like playing ping-pong with your brain.

3. Open up capsules and count beads if you can't get them in smaller increments from the pharmacist, or get a scale and weigh your dosages yourself.

4. Let your own body's reactions be your guide. It will tell you if you can be more aggressive or need to be more conservative with your reductions.

Ah. Okay.

So, no more skipping. Cool. Especially with a drug like Effexor, with such a short half-life, this makes sense. So I went back to a daily dose, but since I'd already reduced below 75mg/day, I resumed at 50mg/day.

I did this by opening up some capsules and counting the teeny little beads inside. I ordered a big bag of empty gelatin capsules, grabbed some black cardstock out of my collection to make the little guys easier to see, got some tweezers, and went to work.

THIS, my friends, is a huge fucking pain in the ass. 

I thought it would be no big deal. I was wrong. They are full of static electricity, for one thing, so the stick together and jump all over the place. Plus, they are round and tiny and they roll everywhere. They are hard to contain. And I have a lot of pills to make.

It's just tedious.

So I got a scale.

Still tedious, but it takes a lot less time now.

I was on 50mg for nearly 2 weeks, giving myself time to recover from the "episode," as I think of it now. During this time, I made a little ramp-down calendar, in which I cut my dose by 10% every 3 weeks (feeling aggressive, me!), just to see how long it would take.

You wanna know? You wanna know how long it would take me to reduce from 50mg, if I were to reduce my dose by 10% every 3 weeks, starting from right now?

ABOUT TWO YEARS.

Yeah. Hell no.

Over the last week, my husband and I both noticed that I was feeling out of sorts: withdrawn, agitated, maybe a bit anxious. He thought I'd seemed that way since the "episode," in fact.

In neuro this past Tuesday, I was telling Dr. Q about it when it suddenly occurred to me what might be causing it: my antidepressant.

I'd been taking 75mg every other day before the episode, which equates to 37.5mg/day, and since the episode, I've been taking 50mg/day. I've actually increased my dose, when in the weeks before the episode I'd seen very clearly that the less I took of it, the better I felt.

So Tuesday night, I said "fuck it" to the 10% rule and to the "per month" rule, and I cut my dose to 40mg.

And I feel MUCH BETTER.

From this, I've learned a thing or two for myself:

1. My body can handle aggressive moves. It just needs a consistent dose.

2. The less I take, the better I feel = I need to get this stuff gone ASAP

3. I'm going to try cutting 40mg to 30mg next week (there has been no noticeable "adjustment" period here, so I think 2 weeks is fine. I'll extend it if I feel it. I'm letting my body be my guide, and my body is saying LET'S DO THIS!), because I think I can handle another aggressive cut. I won't know unless I try. And if it feels wrong, I can back off and bring it back up to 35mg. I know how to do this now.

So. I'm not going to jump the gun, because I know what that feels like, but I'm also not going to languish away forever if I can get this stuff out of my system more quickly. I want to get moving on this, because I want to give neurofeedback a chance to work its magic on my brain when it is NOT under the influence of antidepressants to see what kind of movement it's able to affect then.

I swear, I can already feel it having more of an impact as the dosage goes lower.

And guess what? At the end of all of this, I'm going to have a full Q again, so we can see the deep impact of this treatment, and I-- and you-- will be able to see the results of the work on my brain.

I CAN'T WAIT!