Cold Feet, Ice Creeping Upwards

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As regular readers may know, like too many people with brain injury, I have thermoregulation issues. That means I’ve run too hot for over a decade. (I write about possible reasons why in my book Concussion Is Brain Injury.) But I haven’t talked about my cold feet and the strange phenomenon of being far too hot in my torso and head and far too cold in my feet and legs. My acupuncturist used to rebalance the heat so I was properly warm head to toe. The treatment never lasted too long, and back I’d go to being hot and cold in the same body.

I didn’t do much for my cold feet because it was the heat that posed the danger to me and sent me to the ER back in 2007. But the heat has cooled down year after year to closer to normal levels with the neuroplastic treatments I’ve been receiving. So I’ve been noticing more the cold in my feet and legs. For the last little while, the cold has worsened in my feet; nightly it begins to creep up my calves to my knees. I feel like I’m slowly turning into ice from the bottom up. It’s always way worse at night (at the opposite end of the night as the heat was).

The laser therapy clinic I go to has recently retained a new doctor, and he decided we should rule out blocked or spastic arteries being the cause. I heard nothing then suddenly I was given 24-hours notice to go to the vascular lab at the hospital I have traumatic memories of. Unbelievably, the lab was on the same floor as the behavioural cardiologist I went to for a few visits in one of those utterly futile attempts to do something about my heart (hence, one source of grief). I also didn’t know how I was going to navigate this hospital, which is normally a zoo, with my new vision. My brain still demands help remapping all first-time-since-the-surgery venues. Sigh. And indoor spaces with people moving in all different directions and sound bouncing loudly off surfaces makes it harder than outdoor spaces.

But no matter, I asked for help at the info desk. Getting a brain injury means you’d better get used to asking for help over and over and expecting you’ll have to negotiate for it, too, almost every time and forging into protracted negotiation that’ll come with a price when people say no. But I digress.

I received help and even better, the place was like a morgue. I have no idea how I lucked out! It made navigating the space infinitely easier. The weird thing is that the place seemed a lot smaller than before my eye surgery. It’s like having true binocular vision has shrunk spaces and even devices like my iPhone in my perception.

The vascular lab takes your blood pressure super quick in your arms, legs, ankles. An ultrasound wand is faster than regular blood pressure equipment! Then the technician begins to sound your arteries with ultrasound to produce colour pictures of your blood flow with the grey landscape of your arteries and surrounding tissues. Blue for 24 cm/s; red for -24 cm/s. Every artery she found, she’d listen to the blood flow. Hearing the strong beating whoosh whoosh of my blood pumping through my abdominal aorta, arteries extending into my thighs, arteries behind my knees, was pretty sweet. The strength lessened on my ankles and the arteries in my feet were very difficult to find. Ultrasound needs fat to bounce off to create a picture of the arteries, and feet don’t have fat up top (or at least mine don’t). No beat. Ten percent of the population apparently has no discernible pulse in their feet. Welcome to the ten, Shireen! Even the beat from a couple of points on my ankles sounded like it came from far off and was high pitched unlike the arteries at the other end of my legs. Their beat was deep, like a bass or baritone.

What did this all mean? I have “absolutely gorgeous arteries.” My arteries aren’t the reason for the cold in my feet and creeping up my legs.

Since the low-intensity light therapy (laser therapy) over the bottom part of the spine warms up my feet and keeps the ice from creeping up at night, the nerves coming out of the spine there were probably affected. The lap belt would’ve cinched after the first impact in the car crash. It would’ve stayed cinched during the next two impacts, pressing into my body. Peachy. Cranial nerves stretched, reducing my saliva, increasing risk of cavities sans me knowing because no one thought to look nor monitor. And looks like same with spinal nerves where the lap belt was and no one thought to look nor go over the possible sequelae and what I should do about them, like wear socks to bed. I’d never had to before so didn’t think about it until I heard of someone doing that a couple years ago.

And now today, I have a light therapy home unit I can use to keep my feet warmer and a clinic to go to where they can help me deal with these perplexing issues. Brain injury doesn’t arrive alone. It comes with friends who need treatment, too.

Brain Biofeedback

Eyes and Heart, Neurons and Brain Connecting Again

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Last year, after eye surgery, my iPhone display looked enormous. These days, it looks teeny weeny. Amazing how adaptation changes perception. I no longer get dizzy moving my eyes across a wide screen. My brain is used to the sharper-looking text and more depth in the screen colours. My panoramic vision isn’t solid yet, but I’m used to seeing my iPhone display left to right, top to bottom, in one go. No more bits missing like before the eye surgery.

I still very occasionally get double vision, partly because my brain is still fighting to return to my pre-surgery default and discard the new binocular information. But brain biofeedback at PZ (top middle back) to inhibit 16-20 Hz, the thinking brainwaves, seems to be helping me win that fight.

(They call the excessive 16-20 Hz “high-beta spindling.”)

Slowly, panoramic vision outside on the streets and in parks is solidifying – one marker of that is being able to cross side streets without having to consciously narrate every step like I have had to since the eye surgery. Now after brain training I can see the traffic on both peripheries of my vision and process it in real time.

My proprioception is improving again; I’m able to distinguish myself in space with full up-down side-to-side awareness, which means I’m not returning to my old default with bits missing in that awareness. (I’ve just realized I don’t keep bumping into door jambs like I used to!) The first week of November I was able to discern the bottom step of the TTC stairs from the landing peripherally (and for the second week through my feet too) while looking ahead at a fixed point and walking down slowly and carefully.

This is huge!

Being able to go down the visually inaccessible steps on the TTC is a lot safer when one can see the low contrasts and feel the differences. It’s a lot of work and fatiguing trying to navigate the bloody TTC when not able-bodied, able-eyed, able-brained. Have I mentioned I hate it?!

Let’s think about more positive things — like my heart! This week was another in a series of OM Effing G!! Did you seeeee that?!!! As I mentioned before, the goal back in 2012 was to raise my HRV (the measure of how well my heart syncs with breathing) from the basement to a modest 10 and to lower my heart rate from freaky 130 to double digits. Also, to get rid of the scary-ass rises to 170 and drops to 30-50 beats per minute. It’s been a slow slog. Low-intensity light therapy (concussion protocol) where the lights are over my cerebellum definitely began to move things along in the right direction. But now–

My low frequency HRV got to 8.57!!!!!

CZ LF Numbers during HRV and Gamma Training

8.57 uV for low frequency heart rate variability (HRV) during HRV training — basically deep breathing — is stupendous enough but to get 8.24 during gamma brainwave training and again have LF higher than sympathetic nervous system activity (VLF) is WOW!!

PZ LF Numbers

LF wasn’t as high during PZ training to inhibit 16-20 but look at that — 5.36 during the first neurofeedback screen! Sweet.

Reducing my 16-20 Hz brainwaves is not only cementing my improved vision, it’s also been working on my trauma-related round-and-round thoughts that whirl up grief, distress, hurt into an ever-intensifying tornado. I didn’t mention the emotion effects to anyone because we were focused on my vision and I wasn’t sure if it was for real, but recently I’ve become sure. My thoughts drop out of the whirling and into clear thinking. Clear thinking is the antithesis of trauma and flashbacks. Clear thinking settles emotions. Relief. Even if it’s only for a few hours or days.

But how is reducing high-beta spindling helping my HRV too?

I came across an article that said the cerebellum is involved in emotional control. We already know it’s tied into the heart via control of the autonomic nervous system. Soooo, using logic — if the cerebellum is involved in emotions and so is the area around PZ, then they must network. And then flow from the emotional control part of the cerebellum into the heart control. Brain injury and healing of injury is like exploring the brain.

Brain Biofeedback

Miracles of Biofeedback

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Something spectacular happened. And happened again. My heart rate dropped into the 70s and stayed in the 80s during brain biofeedback two weeks in a row. And my HRV (heart rate variability) hit 6. Six!!! Back in 2012, two was good news, and ten was the goal. So five years later, more than halfway there. (By the way, athletes have HRVs of 60 or something silly high like that. But even old people are higher than me.)

My EMG (muscle tension) was also below 2.0 uV for most of the training for the first time in months. I’ve been a bit stressed, and it’s shown up in my jaw muscles. But turns out getting Invisalign to straighten teeth banging painfully into each other has the rather nice side effect of relaxing jaw tension. (You’d think going into debt for my teeth in our universal health care system we enjoy here in delist-as-much-as-we-can-so-we-can-employ-more-hospital-admin-Ontario would counter the relaxation.) Was that also why my heart rate went down? Apparently, I have a narrow airway so maybe when these things are in my mouth, I get more oxygen. Or maybe not.

Maybe it’s doing more to ease my lower back or maybe it’s taking a new anti-inflammatory for joint and muscle pain after exercise. It contains devils claw (what a name), ginger, chokeberry, Angelica gingas, turmeric, and green tea. Apparently, Angelica gigas (dang gui) has been used in traditional Chinese medicine for circulatory health. Was there enough in my not-quite-daily intake to strengthen my heart and improve brain control of HRV??? There’s no doubt my brain is improving rapidly again; that means more resources to control autonomic functions like the heart. I still get short of breath though, so I gotta be careful not to push the limits just because I’m thinking clearer, am more alert, am improving control over my emotions — the latter only as long as I use SMR/Beta L13.5/R18 Hz audiovisual entrainment most days. And most of all, the chaos in my head really is GONE!!!

I really think that the three sessions of gamma enhancement and three sessions of SMR enhancement and two of 16-20 Hz inhibition, along with the concussion protocol of the low-intensity light therapy that kickstarted the heart improvement is most responsible and the effects are beginning to show.

Topping the amazing heart news is the miracle that happened last week during my first gamma enhancement neurofeedback screen of my brain biofeedback session. For one minute and thirty-six seconds, I was in the zone. In what psychologists call “flow” and what brain injury took from me. That sweet feeling of being so deep into a book or work that the outside world disappears and your mind and brain hum along in harmony. I was oblivious to my brain trainer’s noisy typing as I followed the virtual triplane in its swoops around its virtual mountain island. My delta-theta brainwaves that always show my brief (or lengthy) distraction as she’ll suddenly bang a key or mouse hard, stayed down and didn’t spike until at one minute and thirty-six seconds, I heard her typing like some sort of loud office cacophony. (Part of the training as you progress is to try and distract you so that your brain will work harder and you’ll learn to focus in a distracting environment.)

We both went WOW!!!

Flow IS possible for me. Disappearing into a book again IS possible for me. Sweet mother, I could weep. But am too stunned and unable to process this unreal progress. Will it happen this week?

Brain Biofeedback

A Stunning Heart Improvement

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"Did you see that?" I exclaimed to my brain trainer after I'd finished my HRV screen.


"It went up to 5.5!"

"I know, and it was smoother."

"Yeah, and I couldn't tell, but was it bigger?"

"Yes, it was definitely bigger."

"We should have video'd it."

"I know. I was thinking where's the camera but didn't want to interfere. And did you see where it started?"

"Yes! In the 70s! And it didn't go up to 100!"

We both stared at the screen, boggled.

The ADD Centre had set the HRV goal to be 10 for the LF part of the heart rate variability screen. Over the years, it had crept up to 2.5. I'd seen it go up to 3, maybe 4 then drop right away. But this one went up and up, hit 4, hit 5 and KEPT GOING. At 5.5, it stalled then slowly fell back to just over 3.

If it was only that, remarkable enough, but for me to see my heart rate start at 79 or so then go SMOOTHLY up and SMOOTHLY down, not erratically, in sync with my breathing climbing into the 90s but staying in the 80s way longer than a few seconds and never hitting the triple digits (that I saw) is just…

Words fail.

My heart is healing!!!

I'm convinced people with brain injury die from heart issues because they're not treated appropriately or even acknowledged as being really serious. My neurodoc and ADD Centre are only ones to acknowledge cardiac sequelae from brain injury is serious shit. And the ADD Centre to do something about it in a way that TREATS it, not masks a couple of the symptoms while throwing me on the couch from drug-inducing fatigue like physicians do. (What is wrong with the state of medicine that even top notch docs don't want to think outside the box, learn, and find answers for their patients when it means reading the literature and working with others?)

And may I say being able to exclaim in delight and celebrate a health uptick with my treating person is wonderful, something physicians don't seem to have the time or inclination to do. Too bad, eh?

Brain Biofeedback

A Positive Beat in Heart Rate with Concussion Treatment

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It was extremely difficult not to bounce up and down in my chair, point at the screen, and scream to my brain trainer: “Look! Look! 77!!! My heart rate has dropped down to what it used to be!!! Holy shit, man!”

That 77 heart rate lasted maybe a few seconds then it rose up a bit and hung out in the 80s until it finally went up into the 90s. But even the 90s–! Whoa, that’s low for me ever since my brain injury sent it soaring to 120–130. My heart rate likes triple digits.

My brain trainer suggested it dropped into the 70s because we talked for 45 minutes. I’m not so sure. I don’t discount the effect of talking, but we’ve done that before. My heart rate does drop after talking – like anyone’s does – be that a lesson to you too – your heart likes to talk out your troubles and emotions – but it hasn’t dropped that much before. I believe it’s the laser therapy I’ve been receiving for the last two years on my neck and lower back of skull, which includes Meditech’s concussion protocol, that has been the real game changer for me.

Well, it in concert with brain biofeedback, a new, experimental approach to reading rehab, and the stability of the sessions and phone calls with my neurodoc, is what is together healing my brain-injury-created heart problems. I’ll write more on this in my book’s update.

Update 12/04/2016: Forgot to mention LF bar in HRV reached high of 3. I haven’t seen it above 2.5 before. The original goal back in 2012 was 10. A tad slow getting there. 

Brain Biofeedback

HRV Training Post Brain Injury Achieves an 89

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Holidays — getting away from my life and the people in it who attack, diss, require me to be normal, live in denial to my detriment, and drain me — are good for my heart rate. First, after I flew to England and now, after I chugged to Ottawa. For the first time on its own, as in not under medication influence, my heart rate dropped into the 80s this week! When I saw 89 pop up on the HRV (heart rate variability) screen as I was doing my deep breathing prior to the brain biofeedback screens, I almost screamed, “Did you see that?!” to my biofeedback trainer. She had. We were both practically squealing. And to think, though this took years and experimentation to achieve, I did it with no medication, no medication-induced fatigue, no lying on the couch for hours on end because of some drug slowing down my heart rate by depriving me of the neurochemicals that gives a person pep, and no horrendous side effects like blue feet.

The memory of those blue feet still gives me the willies.

I continue to forge into the frontier of medicine where we can treat our brains and hearts with more than chemicals, surgeries, and stents, where we can effect permanent change that can withstand intense psychological stress, for there was something even more remarkable in this 89 beats per minute rate: it happened in the midst of the kind of emotionally traumatic maelstrom that usually sends my heart rate up to 130.

It seems it isn’t the physicians who heal anymore, it’s the psychologists who think beyond the box, who still aim to find a cure while physicians are content to manage with drugs that cannot cure. And when on the rare occasion they do find a cure — like with Hepatitis C — the government isn’t interested in funding it, preferring to spend money on managing while people deteriorate, go on disability, lose their quality of life, and no longer contribute to government coffers.

And then we wonder why health care costs so much.

Cures — real healing — give people hope, give people themselves and their relationships back, give people their lives back. Cures return people to society. Cures return people to their work and to filling up government coffers.

Cures: that’s my ultimate goal of brain injury treatment. Why isn’t it the medical profession’s? Or governments’?

Brain Biofeedback

Happier (Brain-Injured) Heart

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The ADD Centre has various ways to measure my stress levels and how well I’m coping through the biometric data gathered during my brain biofeedback sessions. Software reads my heart, skin temperature, breathing, and EEG sensors and analyzes them to give a measure of how well my brain and heart are functioning.

This measure is usually in the basement. Certain kinds of relationship events are guaranteed to send it plummeting. Even when things are going tickety boo, it’s about half of the normal threshold.

Last week, it went above that threshold for the first time. What did I do?!!!

Several things happened and that I did, so it’s a bit tricky to figure out what suddenly made my brain cope better with stress.

Was it the accumulation of gamma-enhancement treatments overall since 2012 or at the PZ location for the last few months? Was it me recently starting to use the Relief setting on the CES device at night to try and prevent back and hip pain from growing through the night? Was it the laser therapy on my back? Or was it the resolution of a major conflict with my neurodoc coupled with me setting certain restrictions on therapy topics until certain conditions were met? I have to say I was surprised he had to adhere without question to my restrictions and surprised at how it gave me a sense of power and control I hadn’t felt in years.

Was that it, that sense of power over a critical part of my life?

Or was it a combination of all those changes that led my brain to recover more function, freeing up resources to run my heart better plus regaining some control plus resolving big conflicts plus seeing someone actively looking at things through my eyes instead of preaching at me.

I wish I knew. It’s a good change; but not knowing means I can’t tell others what works and I may regress (which brain injury and PTSD recovery are wont to do) and not know why.

Only experience over time will tell. I guess. I hope.

Brain Biofeedback

Good Heart!

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Holy — — my starting heart rate during neurofeedback was 95. Not ending rate, not achieved after writing in SMIRB, not after reading, but right at the very start in the 30-second assessment screen. It stayed in the 90s during HRV then crawled up into the 100s during the biofeedback screens then dropped back to 99 after SMIRB — the increase was not surprising really as the biofeedback screens were hard work plus I had that flashback moment during the first two similar to the one I had several weeks ago. I felt the edge of the flashback during the first biofeedback screen, but felt it full on during bowling and discussed it with my trainer before starting the third screen.

It’s normal or not surprising given the situation I’m in to have that kind of unpleasant experience. We talked also about how when trauma memories begin to surface and take over, you feel the therapy is not working or your shrink is a dork and isn’t doing his job. That’s when people leave treatment. I think that was a warning to me: it’s hell but keep going because treatment with them and with my neurodoc is working and this is the way to come out the other side. Sigh.

My trainer switched up the biofeedback screens, putting the biplane first and bowling second. Breaks the habituation effect, I think. And like last week, my boat lost the race in the last screen. Bugger. This time my 13-16 Hz boat lost to both the busy brain and delta-theta boats. Of course, this is happening because my trainer had toughened the thresholds. Easy training is not good, you know!

She also decided not to reassess me today. Not a good time after the bad week I had and my vision changes disorienting me. Plus she has to stare at my eyes during the assessment to mark off my eye-blinks, and that could collapse me into fits of giggling. That would totally mess up the brainwave collection! Next week, she said.

I’ll end this post with how I began: my heart. Like last week, I could be getting excited over nothing because we’ve seen my heart rate drop before only to leap back up. But I did see something new during this week’s HRV screen: while I exhaled, my heart rate dropped in concert with my breathing smooth-ishly down through the 90s, 80s, 70s to 77 before climbing back up gradually while I inhaled. Not once but a few times, it did that. Whoa nelly! I’ve seen that in the 100s but never below 100 or more than a few beats apart. I got to a magic 2.5 on the HRV scale that we’re monitoring (my goal is 10; I’m usually at 1 or 2),

That smoothish, downward drop was a far cry from the usual abrupt drop I’m used to seeing from 100+ to 80 or 50 or like last week 37 and then abrupt rise back to where it was. 110 to 50 to 110 is not normal; gradual drop like I saw this week is. This is what my heart is supposed to do. Let’s hope it continues!

Brain Biofeedback

PTSD Hits During HRV in Brain Biofeedback Session

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I had a flashback during the HRV screen in brain biofeedback. There I am glorying in an LF number that was higher than my sympathetic system’s number (meaning heart doing better) when boom: I know where I am, but I am reliving the early days of brain biofeedback when I was being trained in the windowless room on the old DOS computer with my first trainer, alone sans any support in this risky endeavour I was taking for my health. I had no idea if it was going to work; I was being told I was throwing money away; I was hearing the usual you just need to get on with your life. Training SMR was unbelievably fatiguing and I was battling sleepiness through almost every screen.

Twice a week.

After every session, I sucked back ginger ale to try and get glucose fast to my exhausted, starving brain while wondering how I was going to get home. Would I be able to get off the train at my stop, I was so tired and at times dizzy? Would I be able to walk home sans collapsing? And was I throwing money away as everyone said? It was hell.

I gained weight because I had no energy to cook properly and subsisted on frozen foods and chocolate and my twice-weekly pop suck-backs.

So there I am re-experiencing that hellish past, looking at the present HRV screen, watching my sympathetic system fire up in response to this PTSD moment, unable to stop the cascade of memory experience — until I remembered to recite the Lord’s Prayer. I’ve known it since I was 6, and it’s a ritualistic series of words that are comforting in their familiarity even if I don’t care about the meaning in that moment. Slowly, slowly, by saying the same words over and over in my head the flashback stopped. But boy did it want to return and take me over again. But I was able to finish the brain training flashback free.

While I was writing in SMIRB at the end of brain biofeedback, I realized I couldn’t shove away what happened like I had the previous few times it had occurred during sessions in the last couple of months or so. This one was too powerful. This time I had to tell my trainer.

She connected up some recent events and situation to why the flashback rose up and took over today. I felt less crazy and, importantly, supported. You see, it always pays to tell the professionals stuff even when you don’t want to with every fibre of your being.

It’s going to be a long year.