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.


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.


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.


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. 


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


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?


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


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.


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.

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.



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?


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.


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.


Saturday, March 21, 2015

Switch: Flipped?

I'd been planning to tell you about how I'm ramping down my antidepressant-- turns out it's a far longer, more tedious, and hazard-prone process this time around than anticipated, so there are anecdotes to relate (and a whole shit-ton of new resources to share, OMG)-- but then SOMETHING HUGE HAPPENED so Imma tell you that instead.

My daughters (5-year old twins) have been sick lately-- they got pretty nasty colds a few weeks ago that lingered, and then last week started coughing and feeling poorly again. They have mild asthma as a result of their premature birth and we've been easing up on their daily inhaler medication, hoping they've begun to outgrow it. But when the respiratory illnesses come around, it's always a little nerve-wracking, because they are prone to pneumonia.

Well. Sure enough. One of them ended up developing both an ear infection AND pneumonia. And I forgot to ask the doctor for chewable antibiotic tablets, instead of the liquid, which my kids flat out refuse to take. And then when I called at closing time to have her switch it, the kind she ordered were out of stock and the replacements were a different dosage and the pharmacy wouldn't make the switch without authorization, so we ended up having to take home the liquid.

Which my kid wouldn't finish, even in a smoothie.

Fast forward to the next morning. The kid with the pneumonia is acting fine, but her sister, whose lungs are clear, has nevertheless developed a horrible, deep cough overnight and is red-faced and hacking all morning.

Pneumonia girl rejects morning smoothie. She's now down 2 doses of antibiotics. I begin trying to get people together for a trip to the pharmacy to right this wrong. We reject getting dressed and opt for nightgowns and shoes. All systems go.

And then.

NON-pneumonia girl, who has been coughing virtually non-stop, suddenly grabs me in panic during a coughing fit, gags, and throws up all over the couch.

She and I spend the next 45 minutes in the bathroom, during which time she is convinced she is going to die and I try to calm and soothe her and tell her that she can breathe, that her coughing just made her choke, that she is doing fine, that I'm there with her and everything will be okay, that she is not, in fact, going to "barf forever," etcetera. Over and over.

Meanwhile, in another part of my brain, l'm gauging the potential for her twin to either join us in the bathroom or need further medical intervention because she has freaking PNEUMONIA and I haven't started her on her meds yet.

Finally, I give up on the idea of dragging these people out of the house and call my friend UltraViolet (yes, that is her Superhero name, and it is well-deserved), who runs to the pharmacy and grabs the meds for me, done and done.

So I get everything cleaned up, everyone talked down off the ledge and/or medicated, get them nebulized and fed and listened to them whine and let them crawl all over me for a while, and then put them to bed for a nap just as my husband is getting home for lunch.

I gave him the lowdown of the day, he went upstairs for a minute, and when he came back, I was sitting on the floor, tidying up. He looked at me and stopped dead in the middle of the room.

"Look at you," he said. "You're not triggered right now!"

I froze. Holy shit.

I did a quick inventory:

  • Off-gassing? No. 
  • Prickling along the hairline (something I've noticed goes along with full-throttle adrenaline charge, in me): Maybe 10% of usual. 
  • Need to shut down, disengage, stuff my face with insulating junk food? No! Look at me! I'm CLEANING! (although a donut wouldn't hurt right about now, let's be honest. Baby steps.)
  • The Fog rolling in to swallow the details of the morning? Clear skies, as far as the eye can see!

I stared back at him. "I am not triggered right now."

Normally, a stressful morning like that, full of worry and stress and chaos and whining and barf, for god's sake, would have triggered the living hell out of me.

I'm a person who gets triggered by needing to make a simple phone call, remember. A morning like this would have required a 16-hour shut-down to recover.

And I could feel it-- don't get me wrong, I could feel the reaction in there, a tiny one, trying to find purchase, but it was as if the edges inside were suddenly almost smooth, and there was nowhere left to bite.

And so it was dissipating. Maybe like it does in normal people; I'm hardly qualified to know. But there I was, not sitting on the couch and staring into my computer screen. 

There I was, after the morning I'd had, being a normal person.

My husband's grin was incandescent. "Look at you," he said again. "Look at you."


We talked about it some more later that night. 

"A year ago," he said, "or even a few months ago, you would have been completely different after a day like this. You wouldn't have been smiling, you would have been irritable, you wouldn't have been talking, you would have been buried in candy or some kind of comfort eating. You would probably have a migraine."

All true. I've been triggered worse for far less.

But that night, I laughed. "To be honest, I've been sitting here thinking I want to go get some ice cream. That one's going to be a harder habit to break."

He gave me a wry smile. "Well, two out of three ain't bad."

"I haven't gone, though," I said. "I'm still here."

He reached out and grabbed my hand. "You're still right here," he said.


I'm going to say this out loud now. 

It's the thing I've been hoping I'd be able to say since I started writing this blog, although if I'm honest I don't know if I ever really believed I'd get the chance.

But I'm going to say it. Type it. Whatever.

Here goes:

I think I flipped the switch.

I think I turned off my fight-or-flight response.

You guys: I THINK I DID IT!


It isn't quite the fairytale ending I'd imagined, I have to say. Or an ending at all, really.

As it turns out, turning off the response doesn't immediately solve every problem, end every struggle, or bring this journey to a close.

What keeps coming to mind is the image of a person who was once very obese but then lost a lot of weight, and now has far too much skin hanging on a suddenly-much-smaller frame.

My body is used to housing parts that are no longer there, and running on systems that no longer operate. Not everything that comes from that is automatic-- there are a lot of learned responses that follow that I still need to work on unlearning, for one thing.

But all that will come.

Because this thing that I've done... I've really done it. 

I've spent the last four-and-a-half years slowly and systematically setting up the conditions under which this transformation could take place, and it has.

And that means I have the systems in place for what happens next.

I've learned what is happening to me, and why and how, and with the help of Dr. Oz and my dear husband and my wonderful family and friends and you and this blog, I've learned how to recognize the changes when they happen and take next steps when it's time.

And now, with Dr. Q and neurofeedback, I've got my brain working from the inside to help get things put back in order as I clear space.

I've just cleared a lot of space.

I can feel the knot unwinding. That relentless, spinning ball of filament wires is finally slowing down.

The landscape is finally, irrevocably changed.

Throughout all this work, so many of the things I've learned and changes I've made have been perspective shifts; intellectually understood and incorporated as fully as possible, despite the fact that there has usually been little to no "agreement" from my instincts.

I think I've probably put a more positive face on it in this blog that it has earned in real life, simply because you're getting this stuff straight from my intellect, here, so you're dealing with the part of me who totally gets it and can successfully navigate all the theoretical nuance.

In practice, I've been much less consistent and aware, because that's where my lizard brain takes over and runs the show. But I've been trying to fight that, all this time, and trying to override what I feel to be true (or what my body knows to be true) with what my intellect knows to be true, and it's been disheartening at times.

I've mentioned it here, I know: that sometimes, despite all the work I'd done, I still felt so far away from resolution; like nothing inside had really changed at all.

That's because it hadn't. Not really.

That fight-or-flight response was still on, so as much as I was learning the whys and hows of it, and learning how to work with and through it, I was really only learning how to act upon a process that remained constantly in motion. Things were not changing from within so much as my understanding of things within was changing, and from there I was able to act.

And mostly, to act as if.

Here's how this week's event was different:

This week is the first time the change has come from my body first.

This week was the first time it has been clear to me that it is not just my perspective on my instincts that has changed, but my instincts themselves.


I have so much more to say about this; so much more to do with this, but I rather think this is enough revelation for one blog post. I'll save something for next week.

Until then, I'll still be reeling a bit from everything I've discovered over the last couple of weeks. And asking myself the question I've been asking for a while now, and in light of recent events, has become undeniable:

I've done what I set out to do. 

It is possible to do what I set out to do. 

I've done it.

And if I can do it, so can others.

How can I help?