Ghost-Raising

Well, I've had another week to talk myself out of believing that this body stuff-- and the additional aches and pains that happened after Tuesday's session-- were actually a) related to the neurofeedback and b) connected to my car accident.

I am a skeptic, as you know, and this stuff all starts to sound a little ridiculous after a while, even to me. I mean, how is it possible that sitting in a room and staring at a computer screen can make my extremities fall asleep for days, or that this feeling can some how signal that I am accessing 23-year old traumatic memories?

<she stomps her feet and kicks a few things in defiance>

Well.

After neuro on Tuesday, I was having even more body pain-- this time, in the head and neck region. My neck was incredibly uncomfortable, and I was having a strange kind of headache-- not a migraine, and not an internal headache, but one that felt like the thin layer of skin and muscle around the outside of my skull was sore with tension.

Who knew that after all these years, even I could have a new kind of headache?!

So when I went back on Thursday, I told Dr. Q about all of this, and we tried a new protocol.

We'd been expected to try something new on Thursday anyway, because Dr. Q was consulting with a second person this week on my case: a woman with an RN background who has been in the field of neurofeedback for 21 years. She turned out to be a great teacher who passed along her rationale to Dr. Q, who passed it along to me.

And you know what that means...

Pictures! ;)

_____

You'll dig this, actually-- it makes perfect sense.

Remember the picture of all that beta and high beta in my Q results? 

Basically, all that yellow, orange, and red = tension. And a lot of it is coming from the actual, internal brain activity, but there is also plenty of it being picked up from around the edges-- along the skull-- that is coming from the muscles themselves.

So the neurofeedback session works to relax those frequencies, but then afterward, sometimes, muscles and structures that aren't used to being relaxed will overcompensate by kicking into overdrive and clenching back up again even harder.

Or hiking those shoulders back up to their customary place under the earlobes.

Or slamming back down on that imaginary brake pedal.

See: me after a massage. For example.

______

So, that satisfies me that it's connected to the neuro. It certainly makes sense. It fits with every theory we've been working under. Every new development has coincided with a treatment session. 

I'm convinced.

On to question number two: what makes me think it's related to the car accident?

Well...

I think we're revisiting the injury sites. The physical injury sites. Even the ones I've forgotten about. 

It's like a ghost-walk down repressed-memory lane.

• First there was the shooting nerve pain in my arm and knee, which was ambiguous at first but is less so now. 
• I don't think about my knees being injury sites from the accident so much, but they were: they were embedded 2-inches deep into the steel frame of the car. I've never regained feeling in either kneecap, but the right one is the worst. I suppose it was one of the worst injuries on my body, although I didn't experience it as such at the time.
• Arm: same thing. My right arm was my shifting arm, my steering arm. That night, I jerked the wheel hard, once to the right, and then a last-ditch effort back to the left.. My right shoulder would have taken the brunt of that effort. There was an injury there.
• Then there was the circulation problem in my arms and legs. That has always been related to my car accident. I still have that problem, although to a smaller degree now. The extreme to which is was happening after last week's neuro session was something I experienced in the months immediately following the accident and was an instant, visceral connection of body and emotional memory.
• Next was the terrible aching in my neck. It was so uncomfortable that it hurt to hold my head up.
• Grade 3 whiplash was one of the most major injuries from the accident. For months after the accident, I could not hold my head up with my neck muscles alone. It would just fall to the side, as if my neck were made of string.

So there's all of that. But here's the kicker:

As these pains calm down, they morph slowly into the more-familiar "cold fire," "off-gassing" feeling that I've been getting throughout the last few years of therapy with Dr. Oz-- the stuff that happens at moments of breakthrough, moments of release of the old trauma and embrace of the new order.

For the past few days, I'm not getting pain anymore, I'm getting cold fire, constantly. And it's concentrating at spots of injury: 

... walking on icy feet up the back of my neck ...

... circling up my right arm from elbow to shoulder ...

... clustering at the inside edge of my right kneecap...

... shivering up my thighs to dance in a cool, shimmering, radiant band across the front of my hips, where there once sat a deep, black bruise, 18-inches long and 3-inches tall, from the seatbelt that saved my life. 

And weirder than that... it's happening on demand. It calms down for a while, but starts back up again whenever I think, speak, or write about it.

Right now, it's fired up and radiating like crazy. 

_____

I believe it. My body certainly does. 

Once again, I have to just trust that something is happening here, and just settle back and watch the show. This tactic hasn't steered me wrong yet. 

The body knows, says Dr. Oz, and she is right. It does. It always has. 

My brain has held these things, these memories, all this time, just waiting for the opportunity to finish the gesture; play them out for good and let them fade.

I think maybe this is what we're doing now. I hope it is.

I hope this is what it feels like: a body that is letting go of what it has held so tightly to, because holding on seemed like the only way to survive.

I have a sense, not of mining through old fears-- I really don't have any conscious fear associated with these old memories anymore-- but of slowly clearing out a backlog so that I can begin to deal with the life that is in front of me.

These old things have been keeping me from being where I am, and it's time for them to go.

The body knows.

Let's do this, then, body. I've got some living to do.

Right here, right now.

Tesseract

Strange and fascinating things** afoot in Girl Who Lived land this week!

Also: annoying and uncomfortable things.**

**It should be noted that the "things" in question are the same things. 

Pop quiz time: 

Considering all you know about me, in the contest between "fascinating" and "uncomfortable," which one trumps the other?

Take your time. Show your work. Eyes on your own paper.

Okay, pencils down.

DING DING DING!! YOU ARE CORRECT!! "FASCINATING" WINS BY A MILE!!

Because I am constantly on the lookout for interesting subjects to take on in this here blog, because I like you and I want you to have nice things, I really do, and therefore am happy to suffer a little on your behalf, I really am, because AUTHENTICITY and REALITY TV BLOG and MARTYRDOM and OKAY NOT REALLY.

Nah. I mean, you guys are cool and everything, but I really am actually that nerdy.

Hi. Sherlock here. We have met, have we not?

_____

To begin at a very good beginning place, this happened a few weeks ago:

Dr. Q was setting me up for a neurofeedback session and we were talking about the preliminary results (this was before the Q results that kind of rendered everything that came before them child's play), and I told her that her finding of clear markers for ADD was probably the thing that surprised me the most, because I'd never heard anything like that before and thought of that as a life-long condition that I should have known about by now.

She responded by reading me this great quote she had just discovered earlier that day from the book she was currently reading, Neurofeedback in the Treatment of Developmental Trauma: Calming the Fear-Driven Brain, by Sebern F. Fisher:

[Following a discussion of disorders in the traumatized brain, from OCD to addiction to personality disorders]

"I no longer see these as distinct disorders or comorbidities but as different manifestations of the same overwrought, dysregulated nervous system. With neurofeedback, we are attempting to tweak the dysrhythmias into rhythmic flow."    

"So in other words," said Dr. Q, "instead of looking at it as an individual diagnosis, you look at the brain as a whole. You've got intense anxiety and depression and hypervigilance constantly fighting for your focus. Of course you're going to have attention problems."

I love this. 

It's amazing, actually, how absolutely true and right that feels-- it snaps into the Universal Canon of Accepted Facts so neatly and perfectly and immediately it's like it's been there all along-- and yet how sort of revolutionary that notion is in Western medicine.

Got a symptom? Get a pill. There is no context.

(ESPECIALLY for ADD-related stuff and kids don't get me started I'll just drop this here and move on but I was a camp nurse for a season and I could tell some stories OMG and isn't this article fascinating and timely)

Ahem. Anyway.

Hearing that quote was a surprising moment of epiphany that unlocked my thinking about what is happening in my brain and body, and in the weeks since has completely reframed the whole game.

Now I'm looking at those test results in a whole new way.

Instead of a list of diagnoses-- which is frightening, intimidating, final-- I'm seeing a list of effects.

Anxiety. Depression. Hyperarousal. Difficulty concentrating, focusing, processing new information or prioritizing stimuli. Sleep disturbances. Migraine. Dissociation. The Fog. These aren't final resting places, but the current and flexible products of an overwrought nervous system; the effects of dysregulation on a brain out of rhythm.  

And that distinction is so very, very important because of this: 

The rhythm, we can change.

ARE changing. 

HAVE changed.

And you won't believe-- I can't believe-- what is happening already.

_____

I've already described what a neurofeedback session is like, and that hasn't changed now that we have the Q results. The only differences happen on Dr. Q's end, in the decisions about where to place the sensors and what frequencies to reward and inhibit. 

My part remains the same: sit in chair, look at screen, watch picture become uncovered, square by square, listen to beeps. 

Every 10 minutes or so, Dr. Q will stop the process and switch to a different set of sensors so that no area of the brain gets too over-worked. We train for about 30 minutes, max.

Seems short, mild, boring, yeah? You wouldn't think much could happen. I wouldn't even think so, and I'm the one doing it.

But the effects so far have been nothing short of astounding.

Before the Q results, we just did a general, calming protocol. And it was generally calming. My sleep was noticeably better from the first day.

I say noticeably better: I mean profoundly better. As in, "I haven't slept deeply enough to dream more than a handful of times in the last five years and now I am sleeping deeply and dreaming constantly and vividly all night, most nights" better.

No joke.

So there was that. There is also the small matter of the DISAPPEARING MIGRAINES.

Like, I've had ZERO non-menstrual migraines since I started neurofeedback, and have had two menstrual cycles with very short, mild, easily-managed migraine-ish symptoms. 

And she hadn't even started the migraine-targeting protocols yet.

Now, for the past two weeks, we've been doing the new, post-Q protocols, and here is where it has really begun to get interesting.

We're starting with the migraines. You may remember the pictures from last week's post that showed the areas of focus for this: the temporal lobes, on the sides of my head above my ears. These structures are also vital in long-term memory-- most notably (ahem) autobiographic memory-- storage and recall. They are also responsible for non-verbal emotional processing. 

(Psst: if you don't know how those two dots connect for me, I have a little homework assignment for you: the first 108 posts of this blog. Start here! Chop chop! It's a light, pleasant read! Won't take but a minute! ;))

Dr. Q has been putting sensors there, and rewarding frequencies other than what those parts of my brain are accustomed to using, which is causing some shifting in the rhythm.

And-- this is how neurofeedback works, remember-- that is naturally going to be the catalyst for a domino effect of some kind, right? These rhythms share a single context, as Sebern F. Fisher notes so eloquently in her book. Everything is connected. So it only follows that the treatment would bring the connections to light.

Case in point: the first few treatments on my temporal lobes have caused me to have very strong, very visceral, physical reactions in my body; the first of which was just odd, but the second of which is clearly, undeniably connected to the months immediately following my car accident.

I've had four of these treatments so far. The first two left me a little too amped up-- enough that I couldn't sleep afterward until nearly 3 am.

So for the third one Dr. Q tried something new. I'm not sure what it was. Something migraine-related, something known to reduce a specific type of pain.

On the way home from that session, I began to have sharp, shooting nerve-like pains in my upper right arm, at the very bottom of the deltoid muscle of my shoulder. Those spread randomly down my arm: elbow, mid-forearm, bicep. Every little while.

The next morning, I woke up with the same kind of pain, but much more severe, just to the inside of my right kneecap.

It hurt enough that it was difficult to rise to a standing position. I could feel it when I walked, but I could walk fine.

I went back to Dr. Q for my second session that week, and we agreed that it seemed likely it was connected to the treatment. She did another one-- I'm not sure it was the same or not-- and that night, I lost all doubt that these symptoms are related.

I went home and found that my arms and legs were... not quite falling asleep, but going cold with lack of circulation at an extreme rate, and I was unable to find a position that would "wake them up" for more than a few minutes. 

This was one of the biggest, most immediate effects of the accident, and something that lingers in a much milder form to this day. I haven't experienced it like this in 22 years, but the feeling is something that is inextricably tied to those early days, for me-- back when I still couldn't see very well, back when I still couldn't move very well, back when I still didn't know how bad it was going to get, how long it was going to last, if things were ever going to get better.

It's a physical feeling, but it's also an autobiographical memory. And an emotional one. 

The smallest of shifts, the first step into the maelstrom in this brain of mine, and we're already here, transported across time and space right to the heart of the matter.

Not wasting any time, I see. Very well, brain. Let's get started, shall we?

I was reminded immediately of the Tesseract from A Wrinkle In Time, which I read rather indifferently as a kid so don't ask me why I have this image on instant recall (oh temporal lobe, you kidder, you!). I was going to try to explain it but when I looked for it on Google images, it was a one-stop shop:

That's how they explain a Tesseract-- a time wrinkle, basically, or their version of time-travel-- in the book. (not to be confused with the geometric term involving cubes which... oh, just google it)

The moral of that particular lesson is that the shortest distance between two points is not a straight line.

Nope: it's neurofeedback. Well, neurofeedback and a loooooooooooot of therapy. Ha ha.

Anyway, back to the holy-shittedness that is happening in my body! Because I'm having trouble expressing how big of a deal this is to me. I think I'm really on to something here, and I think it is ENORMOUS.

I also think this neurofeedback is going to be a hell of a lot more intense and physical and painful than I thought, if this is happening right out of the gate.

But you know me: fascinating trumps pain every time, and this, no matter how irritating, is fucking fascinating.

I mean... you guys! We've officially entered the vault!

This is a piece of my past, and I am reliving it right now as we speak!

Except... holy shit. Right now, I know so much more than my 19-year old self did, don't I? 

I know that the bad part really is over. 

I know that I am safe.

I know that things got better. That things got amazing, and scary, and surprising and sad and wonderful and profound and disappointing and joyous and strange and all the other things that make up a life that's been lived.

I lived. Right now I know... more than I did then, at least... that I lived.

So maybe this is what I will do now. Take these memories out one by one, as neurofeedback brings them up,and re-experience them from my safe vantage point, and as my present convinces my past that everything is all right, the act of doing so will finally convince the present that it's true. 

That sounds a bit convoluted, I know, but after all, the shortest distance between two points is so rarely a straight, simple line.

The QEEG: The Results Are In!

So. I have test results.

If you don't know what I'm talking about, you might want to go back a few posts and read the one about neurofeedback and the QEEG. Go ahead. We'll wait here. 

I've been trying to figure out how to share the results here-- it's all a bit complicated and there's a ton of information.

I think for now I'll just share the most glaring bits (because there were definitely some glaring bits), and a few pictures (because there are pictures!). The report is so thorough and dense that I'm not sure I understand it all yet, myself. But I can tell you about what I do understand, and about how we're beginning to tackle what's going on in there.

_____

I was so curious about what would come up in this test! It wasn't so much about finding new things as it was about discovering the details and intensity of what we already knew was there from the initial testing, so that Dr. Q could design training protocols to address my specific needs. 

I admit that I was hoping, in a weird way, that the migraine and PTSR stuff would show up as severe, just to validate my experience of it. 

Do you know what I mean?

I mean, I consider myself a pretty tough person, when it comes to coping with chronic pain and suffering. I'm no fragile flower. And I've been dealing with the migraines, for example, for a very long time, and have learned to endure a lot of pain and get on with things anyway-- otherwise I'd never get anything done.

I'm not a baby about this stuff, in other words. I'm certainly not one to wilt at the first sign of discomfort. In fact, kind of my whole MO with the PTSR has been to dissociate my brain from my body so that I could march on, unaffected by the discomfort that I might be feeling somewhere, and it's only recently, through this work, that I've been allowing those two to begin to integrate again and allowing myself to feel that discomfort in increasing intensity-- which I am already pretty well-trained to handle.

So if I experience this stuff-- the migraines and the hyper-vigilance and anxiety-- as severe, I'd like to think that it would also be seen, objectively, as severe, as well. By science. You know?

Well.

Let's just say that my experiences were validated. Beyond what I'd expected. Far, far beyond.

_____

Okay, so, like the last test, after they've collected the data from the Q, they compare it to a big database of information that serves as the control group-- the "mean," or what counts for our purposes as the typical, healthy brain.

So your results are plotted on a bell curve, so you can see where you fall compared to most people. The bell curve we used looks like this:

Sorry for the poor quality pic-- I forgot to get scans so I'm taking pictures
with my phone in the coffeehouse. Viva la DIY!

Okay, this part will be important in a minute and will explain why I'm a bit blown away by my results:

For each of your results, you get a number, called a z-score. That center section of the bell curve up there, the section on either side of the mean in the center (called a "standard deviation), accounts for 68% of the population. Dead-on mean has a z-score of 0, and 68% of the population would have a z-score within those single standard deviations, so between -1 and 1.

Within two standard deviations from the mean (out where you begin to see the colored bars on the graph above), you account for about 95% of the population. That means that most people-- 95% of people-- have a z-score between -2 and 2.

Three standard deviations from the mean (a z-score between -3 and 3) account for about 99.7% of the population.

So that means if you have a z-score that's lower than -3 or higher than 3, you fall into about 0.3% of the population in terms of the way your brain is functioning. 

Or, perhaps, put another way, the extremity or severity of your symptoms compared to other people.

I bet you're wondering why I'm bringing that up, eh? O.o

Here is one the graphs that shows the frequency associated with migraine (beta):

The spectrum below the head picture aligns with the bell-curve. 0= mean, etc. White = normal, basically.
The numbers in the table to the left are my z-scores for various points on my skull (EC="eyes closed," EO= "eyes open."). I am over 2 for all of them, so that means I am out there in 5% of the population land... except when I'm even worse than that.

Interestingly, this frequency in this particular part of the brain is also associated with non-verbal emotional processing. That 3.43 score (with my husband's notes pointing at it), is for the large red area on the right side of my head behind my ear-- the part of the temporal lobe that is in charge of this kind of emotional work.

Dissociated me, as we know, is not so good at this; has not been for 23 years. I knew that. I did.

I did not expect to see that I had more trouble with this than 99.7% of the population. My husband and I both stared at that and had it all explained to us (he has a psychology degree from Cornell and was an immense help to me during the delivery of these results-- he knew what he was looking at when I did not), and it still took a while to register.

Holy shit. That seems awfully extreme.

But then again...

A not-so-small part of me is pumping her fist, going, YES!

FINALLY!

I finally have proof that this is real, this thing that I've felt was true and felt ashamed for thinking because it didn't seem possible-- it seemed, somehow, too much to presume that it was really this difficult for me; that I was somehow being selfish by feeling so alienated.

Like I was trying to make myself sound special if I suggested I was having as much trouble as I was.

I've always feared I'd sound like I was exaggerating, or making it up.

Note: this is why dissociation-- and the PTSR response-- came so easily to me. I had a natural tendency to help it right along.

Anyway, now I've got the z-score to prove that I am not making this shit up. It is about as extreme as it gets. And the migraines are no joke either. 

I have not exaggerated a thing.

_____

Next up: the hyper-vigilance.

This is a little bit more complicated, but in broad strokes, it's basically this: they measure the ratio of beta and high beta (the frequencies that indicate thinking activity-- a busy brain) to delta (the slow, calming wave that naturally balances out the beta and quiets the brain). 

This reading will show whether I have enough delta to balance my beta. If I do, I've got a calm, balanced brain. If not, I will tend toward racing thoughts, anxiety, memory and attention problems, and a lot of other stuff, but within the context of my PTSR, this will account for my hyper-vigilance.

This is my fight-or-flight response, triggered and constantly on, buzzing in the background, never at rest.

Ready for this?

The scientific term for this is "Holy Crap."

Also: 

1. The first column of letters & numbers refers to sensor points on the head.

2. I don't know what the difference is between beta and high beta.

3. They do part of the test with your eyes open and part with your eyes closed because comparing consistencies and inconsistencies between the two allows them to determine what readings might indicate a temporary "state" vs. a permanent "trait."

Yeeeeah. Check out that second column of z-scores. A negative number means "Not Enough Delta." All but one score fall below -3.0. One is -3.97. Almost literally off the chart.

This one is intimidating. These scores are serious. 

For one thing, as I mentioned before, people with ratios this imbalanced have a high tendency toward addiction, because they are looking for something-- anything-- to calm their brains.

Makes sense, right?

Here is one area where I am profoundly grateful for a whole lot of things I've done (and haven't done) in my life. Because those scores should strike terror in my heart, and they don't, and I'll tell you why:

First of all, as my long-time readers know, my drug days are well behind me, and I don't miss them. For good reason.

Second of all, alcohol gives me migraines. Boom. Couldn't be a drunk if I wanted to. My head would explode first.

Third of all, because of all the therapy and the research and the work I've done, I have so much context for this. I feel so incredibly lucky to know and understand what is happening to me, unlike so many who struggle with PTSR-- especially with cases as advanced as mine: people who have been fighting against their own brains for half their lives or longer without even knowing it, and who know nothing about the cause and effect of it other than the fact that (fill in the blank) gives them some respite from the pain.

Jesus. That could be me, and I can't tell you how grateful I am that it's not.

So I feel like I'm armed for battle, here. I feel fortified. I also feel very, very aware of the behaviors I've chosen in place of drugs or alcohol to quiet my brain.

Food, for example.

I mean, that one was a no-brainer. There are periods when there is no donut within a 5-mile radius that is safe from me. Emotional eating is a well-known coping mechanism of mine and something I've been discussing with Dr. Oz for a long time.

I'd even beaten it for a while and lost a bunch of weight. When I gained most of it back very quickly during my antidepressant roller coaster a few months ago, those donuts started shaking in their boots again.

They're still nervous. They should be.

But there are other things I do. I read. I surf the internet. I watch movies. In therapy with Dr. Oz, we've always talked about it as "decompressing" or "taking some time, getting some space." 

This is all true, and it does have that effect. I initially called it "shutting down," and Dr. Oz gently corrected my language, saying it was necessary for me to do that, with all my brain was trying to do in addition to the constant demands of raising two preschoolers.

Kind of her, that.

It's still necessary.

However, within this new frame of "Addictive Behavior," I also know that it can become more than just "decompressing" and venture well into "shutting down"-- as in, shutting out everyone and everything and insulating me completely from the entire world-- and that I have to be careful not to indulge that inappropriately or too often.

My husband has certainly pointed this out to me often enough.

It seems harmless, but if it's controlling me, it's not.

Since I've reframed my thinking about these behaviors, I've started to replace them sometimes with ones that are a bit more social. A jigsaw puzzle with my sister instead of sitting on the couch with the Kindle. Still intensely engaging, but not so isolating.

I go on walks with my daughters. They are hilarious and brilliant.

I've been making plans for our garden. And my office. And when my office is done: more writing and creative projects.

And just last night, I decided that I'm going to add "bike ride" into the mix. I'm going to start working exercise into my replacement behaviors. If I do it often enough, who knows? Maybe I'll become addicted to that.

HA HA HA.... well. It will probably never be more fun than reading Sherlock fanfiction, but if I ever want to fit back into all the great clothes I was wearing before the whole unfortunate amitriptyline incident, this seems like a pretty tricky way to get to work on that.

_____

Dr. Q and I have begun the new protocols, and I am already noticing a difference with the migraines. As in, I am not really having them. Or just barely.

I am noticing myself being triggered quite a lot-- I would imagine that any shifting around of the careful construction in there is going to cause some panic, for a while. But I'm confident that with time, my brain will open up some new pathways and try something different.

It has so far. It's really working, you guys. It's seriously amazing.

And until the panic calms down, I'll just be watching Sherlock reruns and doing jigsaw puzzles.

Or walking to the library with my adorable little girls.

Or riding my bike.

To the donut shop.