Brain Biofeedback

Gamma Wave Biofeedback, Day One

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It’s been a roller coaster the last few months of hope and regression. I got a taste of what having more GABA in my brain means to good functionality. But then I was tossed out of the research trial in which I’d received the GABA-boosting research medication and the commercially available previous version didn’t work well and made me feel ill. But then I connected gamma waves to GABA, called Dr Lynda Thompson at the ADD Centre, asked her about gamma waves, and by the end of that conversation we’d decided to try doing biofeedback on gamma waves at the 40Hz frequency, something not done though it seems to be a frequency affected by brain injury.

Today I began that biofeedback. I went in for a reassessment and an initial training session. As had been done before, I began with a questionnaire then the boring 1-2 test, officially known as the IVA test. They have it installed on a new computer! Well, it has been five years since I last did it. But the test looks and sounds the same: A simple DOS interface with amber fonts and lines for the visual part and headphones (much more comfortable these ones than last time) for the auditory part. To do the test, you click the mouse when you see a green “1” flash in an amber-outlined box or hear “one” but not for the number two. It’s 15 minutes of sheer boredom. Which is the point. Can you pay attention? Can you sustain it? To my astonishment, I felt more competent than last time, and I know I did well back in 2007. The results come immediately, and I did do better!

It’s true: spontaneous improvement continues long after biofeedback ends.

The other attention test, TOVA, I hadn’t done before, maybe because it’s hard on my eyes. A rectangle flashes on the screen then off in less time than it takes to blink. You click the switch if a black box is at the top of the rectangle but not if it’s at the bottom. It’s both simpler and harder than the IVA — harder because you have to sustain attention through long streams of bottom boxes then suddenly it’s the other way around, leading to the danger of false clicking when switches again.

I was in 99th percentile for my age group. Ahem.*

Then at last it’s time for the single-electrode EEG. They placed the single electrode in the CZ position because it picks up brain waves from the frontal cortex, sensory motor, and deeper structures like anterior cingulate and it is also less affected by muscle tension artefact.

CZ is dead centre on top of head.

After doing a three-minute baseline reading, we began the training. We had picked HRV (heart rate variability, an indicator of heart attack risk), bowling (yay!), sailing, and clouds screens. The HRV screen is designed to increase HRV by getting you to breathe at six breaths per minute for three to five minutes. It’s one thing I do well, breathing that is, thanks to a psychologist I had back in 2000 who spent much time teaching me. But my HRV is not so hot. Less than 5 on the scale. The heart rate is supposed to sync up with breathing rhythm and be at least 10.

In the US, they have observed that brain injuries in American vets from Iraq or Afghanistan have affected their hearts. I’ve yet to find a Canadian doc to have noticed that, yet at the ADD Centre, they are aware of it and a trainer who helped me with my exercise regimen was well aware of it in athletes who’d had brain injuries. Says a lot, eh?

Anyway we began the training with the bowling screen. How do you do it — get the bowling ball on the computer screen to roll down the alley and strike out the pins then repeat? Uh, I don’t know. I just look at the pins and try to make the ball move. It moves when my gamma waves rise above a certain threshold, my EMG drops below a certain threshold, and other brain wave frequencies we want to inhibit in me also drop. It moved! Then it stopped. Then it moved! And kept on moving! Then it stopped. And so it went, as biofeedback is wont to do.

The clouds screen had only the first two parameters. I breathed too slow, and I went into a hypnotic state, like I was being sucked into the clouds. I don’t think that’s a good screen for me! I did make the clouds move though and the planets appear.

The sailboats screen is the hardest, always has been for me. You want the gamma wave boat to beat the EMG and other brain wave boats as they race left to right across the screen. I could really feel the effort of trying to move that gamma wave boat while continuing to breathe at six breaths per minute to keep EMG down. I was tiring, and so I was so surprised that my brain “learned” during that screen too.

The goal is to increase my gamma waves while decreasing my EMG or muscle tension. And you know what? I did it! But boy did I have a concentration headache in that area.

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*The average drops as age increases. But I wonder if it’s not so much age as the reason why but more a factor of not using the brain, just like how when people move less as they get older, their girth increases. It’s not age so much as becoming sedentary.

Brain Health

Recounting the Original Story for the Umpteenth Time

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I have told my story a gazillion times. Well, okay, maybe not a gazillion. But between insurance docs, my docs, vocational and functional assessments for the insurers, therapists, new recent docs, it sure seems like it’s been a gazillion. So you’d think by now it would be no big deal. I could go into some sort of auto pilot mode and recount it like some bored taped recording, disconnecting myself from the memory.

Unfortunately that doesn’t work. Each doc has their own questions about the crash that injured me, their own unique angle of perception, and I have to engage. After today though, if I have to see someone new where there is a possibility of having to recount it, I think I may take a printed copy of my blog post with me, highlight the relevant bits, tell them to read it, and leave me out of it. I’ll tune back in when we get to the questions about my current day problems.

It isn’t just repeating the umpteenth recounting, it’s the having to remember that night, and with that memory comes all the others that followed, like some sort of unstoppable neverending train.

The viciousness of post-traumatic stress disorder is the memory of the trauma coming back into consciousness over and over again. This is similar except that the medical profession is demanding you do it. Insurance companies specialize in this kind of torture.

Those bad memories of the crash and the insurance fight had faded away until these last couple of months, what with seeing new docs and having to wait forever in a waiting room seemingly filled with people recounting their nightmare insurance stories. The fact that everyone who’s been injured and has had to make a claim has the same nightmare doesn’t make it easier to bear — especially when that nightmare is supposed to be over for me.

But apparently like a piece of rotten meat, it keeps coming back on me.

Brain Health

Sleep Study in the Raw: The Results

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I got my results. They weren’t anything unexpected — for the most part. This was my fifth (I think … I’ve lost count) overnight sleep study, and the results of each have been pretty much the same. And the solution has been as well. I did this sleep study in the raw, that is, without using my audiovisual entrainment device to help me fall asleep so that they could measure my sleep in its natural state.

The good news is that I don’t have sleep apnea or any respiratory problems during sleep apparently. The so-so news is that this sleep study caught something others didn’t, something I knew I had — restless legs. The irony: they are not such a problem for me as they used to be, in fact, it’s a problem I rarely think about. I can’t believe it’s finally being noticed when I’m no longer bothered by it!

Now for the report.

They diagnose mild PLMS. I had to look that up. It stands for Periodic Limb Movement Disorder. It’s when one’s limbs move involuntarily during sleep. Apparently Restless Leg Syndrome (RLS), which is what I thought I had, includes limb movements when awake. Well, that’s what used to happen with me, way back when. RLS also includes “a voluntary response to an uncomfortable feeling in the legs” — something I used to do every night, it seemed like. But though I may have that uncomfortable feeling when I’m rather more tired than usual, and at any time during the day, I no longer have the voluntary response or the urge to move or jerk my legs. In other words, I’m better. And now the sleep study reveals it. The doctor who gave me my results offered me meds, specifically clonazepam. They’d titrate me up to when morning grogginess kicked in. Oh goody, like I’m not weary enough when I awaken. No thank you.

The other sleep problems included increased sleep onset latency (I took longer than normal to fall asleep); 5.9 hours of sleep (almost 6 hours, not bad); 37 minutes of being awake after initially falling asleep; decreased sleep efficiency, though if we don’t include how long it took me to fall asleep, sleep efficiency was normal; increased wakefulness; increased alpha-wave EEG or alpha wave intrusions; increased stage 1 sleep; decreased stage 2 sleep; increased stage 3 sleep; and increased stage 4 sleep with increased total slow wave sleep in total sleep time; decreased REM sleep; 143 arousals. of which 116 spontaneous, 17 leg movement, 10 RERAs (hey, I thought the report said no respiratory events — is it cause this Respiratory Effort Related Arousal is an EEG thing with barely perceptible respiratory changes pre-arousal that it’s not considered an actual event? Still my oxygen saturation was 100% in the 90-100% range); 17 leg movement arousals with 2 short arousals from slow wave sleep but without abnormal behaviour noted. In other words, I didn’t sleep talk or walk. And I don’t snore! But otherwise I’m pretty screwed, eh? Especially as I was — again — given no firm solution after hearing that litany of goodness.

In any case, although the increased alpha wave EEG during sleep is something I’ve had for years, long before my brain injury, the increased slow wave sleep and decreased REM I did not. I spent years after my brain injury not dreaming at all. I couldn’t tell if I was just forgetting all my dreams, something totally new to me, or truly not dreaming. However, in the last couple of years or so, the dreaming returned. And I had thought it was normal again … but then it had been so long since I had had a rich dream life, what would I know what is normal?

I could not find much information on why I am exhibiting these changes and when I was told my test results, the doc didn’t say much about the why. But perhaps that’s because this is just another area medicine knows extremely little about. One 2012 study noted this deficiency in research and noted that:

Objective sleep studies show reduced sleep efficiency, increased sleep onset latency, and increased time awake after sleep onset. Depression and pain exacerbate but cannot entirely account for these problems. There is increased slow-wave sleep. Individuals with TBI show lower levels of evening melatonin production, associated with less rapid-eye movement sleep.

I do not know what my melatonin production is, but to test it would cost me $600, so that ain’t happening. Anyway my hypothalamus fix pretty much allows me to fall asleep at a decent time and quickly.

So what’s the upshot of all this? I was sent back to my referring doctor with the instructions to try Lyrica (a pregabalin, a GABA analogue). It may help with my sleep. It may not. It may also calm those restless legs too. One would think you go to a specialist, you get a definitive answer, a solution that works. When it comes to the brain, not friggin likely. But I have other plans. More on that in a later post.

Brain Power

Jan Wong and the Muzzling of Free Speech in Canada

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I caught the end of Jan Wong’s interview on Metro Morning on CBC Radio 1 Monday last week. Matt Galloway asked her why she wrote her book Out of the Blue. She answered with an experience I find so familiar.

People think we have freedom of speech in Canada, but lawyers routinely muzzle Canadians. Privacy legislations are used as a way to prevent people from telling the truth. Confidentiality agreements perpetuate anti-freedom of speech so we are left in ignorance about how things actually work.

I was not allowed to write or speak about my brain injury or my insurance battles. After pleading to keep a blog, I was given permission by my lawyer to do so only if I didn’t write about a whole host of things, including insurance law, health care, brain injury, me.

After all was wrapped up, it took me over a year, and only with the encouragement of a social worker, to write about my brain injury. I felt like a mole coming out into the light, blinking against it, and looking back to see if the darkness was still there, waiting to get me. I have not yet found the courage or figured out how to write about the insurance battles so many of us wage, that wearies thousands of us.

Wong must’ve been like me and managed to keep out the usual confidentiality portion of a settlement or found a way around it. After years of being silenced, she says it’s liberating to write her story. That is a lesson for me.

Brain Health

Clinical Trial Woes

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Sooo … I was in a clinical trial recently. It was, uh, interesting being on the other side of the guinea pig fence. The drug did more than expected. And then it was taken away!

But I get ahead of myself.

It was March 1 when this story began. I saw a new specialist and was immediately enrolled in a research drug trial for ostensibly my pain and sleep. Theory: reduce pain, improve sleep as pain and sleep are connected.

March 8 after a week of baseline monitoring, I was put on the research drug, a controlled release, long-acting version of a GABA analogue. I was told there would be different dosages. When I visited the US government’s website on the trial I was in, I discovered that they tapered the dosages up. So week one I was on the lowest dose. March 14 I went up to the middle dose. March 22 I was put on the highest dose, the one they were studying. After a week of adaptation, I was sent on my way with a monitoring watch strapped on and about a three weeks supply of the highest dose. Since March 1 I had to phone in before noon a daily diary of my pain, fatigue, and sleep. I missed a few days, either because I forgot or because the system crapped out on me and I gave up dialling in and getting nowhere. Since March 8 I also kept an evening paper diary of the exact time I took the research drug.

Every time they raised the dosage, the side effects of dizziness, sleepiness, and nausea would appear for a few days, but each time would be less problematic and by the time the next uptick in dosage was due, would be gone. The sleepiness was murder for a couple of days there, but dizziness I’m used to, and the nausea was bearable. The worst part was that I felt nothing. No difference. All these side effects, all this diary keeping, and no good stuff. I started wondering if this drug was going to do anything, and given the researcher’s questions, I think the team had begun wondering too.

And then …

Pow!

I was baking like no tomorrow. Good thing it was only a few days before Easter feasting. I was baking cookies, puff pastry, palmiers, mushroom vol au vent, pavlova — all like I had done before my brain injury. Effortless on my part and tasty on the eaters’ part. When I say effortless I mean not having to actively think each step, check and double check what I had done versus what the recipe called for, not being uncertain about whether the baking time was long enough, working successfully with my ornery oven, even doing something I hadn’t done since the 1990s: making up a recipe from baking principles to use up left-over yolks. I felt like I was being pushed on some sort of fast-moving baking impetus. It was rather weird. And startling. And amazing!

But that’s not all.

I began to walk longer distances, faster, so much so my hip muscles began to ache more from overuse.

But that’s not all.

April 1: I wrote more than I expected to, not only pages for ScriptFrenzy, but a blog post and pages for my brain injury book as well. Could be an anomaly because I have had days here and there of much writing. But it persisted while I remained on the research drug.

April 2: Baking frenzy week began with hot cross buns. For the first time since my brain injury, I got the baking time right without worrying excessively then underbaking.

April 2: My activity level shot up. I did much more than usual online and around the house in one day. My activity level remained up while on the research drug.

April 5: Making strange mistakes, yet I suddenly started dreaming up what to make for an Easter vegetarian main, and I began making it that evening. Successfully too.

April 5: My body temperature began dropping towards normal. Although it had been slowly in the last few months, this was a big shift downwards. I can take my thyroid medication in the way it’s supposed to be taken. Before and after being on the research drug, I needed to take it during breakfast so that it would not raise my body temperature. During the trial, it didn’t raise it at all when taken half an hour or more before.

April 5: I indulged in a Mayan Hot Chocolate at Soma, and it did not increase my body temperature!

April 5: Initiative returned, that is, I could act on a thought, whether the thought was to make puff pastry or to empty the dishwasher or to write a blog post. Holy cow!

April 5: “Fatigue is just friggin’ weird.”

April 5: More active than the current levels of fatigue would normally allow.

April 6: No afternoon sleepiness or down time.

April 6: I winged making icing and got it right for the first time since my brain injury.

April 8: I had increased tolerance to noise for about an hour.

April 9: I woke up without long lines of pain down my arm muscles as well as less pain in my lower back and hips.

April 9: I tolerated and even liked radio music to yoga.

April 9: I was able to read longer!

April 10: My parents told me I’m coherent, together, with it. Calmer. They do not want me to come off the research drug because they see such a big change in me.

April 13: I read on the TTC for the first time since before my brain injury, I mean really read, not just looked at words but absorbed the story, followed the plot, remembered the characters, engaged.

April 16: My sleep has improved enough or stabilized enough that I didn’t mind the sun waking me up early.

April 17: In tests at the research lab, my heart rate is in the 80s. Never has it been that low since the brain injury when taken at a doctor’s office or by a health care professional.

And then it was over. On April 17, I apparently did not qualify for the randomized part of the trial because of my fatigue levels. I gather they had not dropped enough. Well, they may not have, but that shows that by not thinking to include activity levels in the phone-in diary, they missed an important indicator of functionality. Sure my fatigue levels had not dropped dramatically — yet I was no longer having long stints of not moving in my TV chair, my activity level had shot up, and I was no longer paying the next day for high activity levels. It does seem confounding for my activity levels to shoot up yet no commensurate drop in fatigue levels. But there could be all sorts of explanations for that. Clearly, the research designers had not thought it possible that although fatigue levels could stay the same activity level could improve markedly.

But I don’t think I could’ve tolerated the high dosage level much longer anyway. There were some too-calming effects starting to appear in certain systems of my body. It is important to pee after all. On the other hand, I could not have tolerated the placebo at all, given what is going on with me now.

I was put on a tapering dose April 17. New improvements appeared for awhile:

April 18: I laughed at less stimulation. It takes a lot to make me laugh out loud, or I must be in a quiet room with no distractions to laugh. This was something ordinary, a small joke, and I laughed out loud!

April 18: I engaged more on Twitter with less effort than usual.

April 27: I was able to exercise, albeit less than two-thirds of my normal routine, on a day I went out to appointments.

I took the tapering dose (middle dose of the three different dosages) for two days then began gabapentin on April 19. Oh joy. I lost a weekend to a combination of what I would call withdrawal from the research drug and side effects from the prescribed drug. The worst of the withdrawal was my body temperature alternating rapidly from what felt like fever to chills. The side effects were the same as with the research drug but with the addition of stomach pain. Over the last twelve days, the dizziness and sleepiness went, but the stomach aches are beginning to worry me. This is not nausea. I understand gabapentin increases stomach acidity, which means I must take it with food and some sort of stomach-calming medication like Gaviscon. If that won’t help, I’ll have to take something stronger.

Worse, I am regressing. The gabapentin ain’t cutting it.

My baking is not as effortful as before taking the trial drug but it’s no longer creative and as effortless either. Pain is back under my mind control, no longer the drug’s. (I hadn’t realised how much the research drug had been controlling my pain, releasing my mind to do other things, until I transitioned to gabapentin.) Fatigue is beginning to win again; I’m having trouble breathing for the first time in months when I do too much. My activity levels are dropping, and I’m having to do an awful lot of self-talk to get things done. I suddenly realised my daily coffee fix had increased from half a cup to two cups. And I’m becoming cranky. It isn’t like before the drug either in that this crankiness feels more like rebound. I think part of it is I was liking where I was going under the trial drug. I dared to hope for the first time that maybe one day I could participate in society like a normal person again. And now I see it slipping away. That would make anyone cranky.

So what to do?

Having conducted a ton of research in his career, my father knows all about this conundrum. The latest one he’s dealing with is an experimental hormone a few of his patients took. The hormone grows the small bowel. These patients have none or are missing the critical portion. This hormone was like a miracle to them. Their bowels began to work; some were able to come off TPN completely (to read about TPN and the story behind this artificial feeding method, see my book Lifeliner). So much so that when the trial was over and the drug withdrawn, they began banging on my father’s door demanding access to it, going back to pre-hormone life was that bad. But research drugs aren’t usually immediately available in the marketplace anywhere. And this one is needed by so few people around the world, it’s essentially an orphan drug. He’s working with others to make it available.

I am not dealing with horrible bowel issues but cognitive, fatigue, pain, sleep, metabolic issues. I now know what it’s like to see a miracle disappear. And I am fortunate that, unlike the bowel hormone, an alternative exists in the marketplace to the research drug I was on. Two actually.

Gabapentin is what I’m on. It’s the cheapest alternative and covered by the Ontario Drug Benefit program (though I still had to pay full freight because of the program’s deductible). Lyrica would be a better alternative, but I cannot afford it. Some drug companies will provide patients with a research drug under compassionate grounds, but it requires a doctor willing to jump through the hoops and a drug company happy to help even though it will not accrue any benefit to them at all. So while I think about my next step, I’ve upped my gabapentin dosage and upped the amount of Gaviscon on May 1, hoping that’ll bring the good things back. Given how slowly benefits take to manifest in me, it’ll be a few days before I’ll know if it will work or not. Meanwhile, here come the dizzy side effects.

Brain Health

What Doctors Don’t Know: Brain Injury Equals Weight Gain

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Weight loss. The entirety of North American society is grappling with weight loss. With diet. With exercise. With staying at a healthy weight.

But believe it or not, people with brain injuries struggle even more than the typical North American. We struggle more because we may no longer be able to perceive that one’s stomach is painfully full as long as there is still food on the plate. We struggle more because doctors don’t acknowledge that mental work may preclude exercise. We struggle more because our metabolism has changed, is no longer the one we know, have lived with our whole lives — and again the doctors don’t even notice the change and thus cannot help.

And so when we suffer a brain injury, we have huge fatigue and understandably feel great pain and stress as a result and suddenly begin (or if did it before, increase greatly) ravenous emotional eating because our usual ways of coping with stress are gone, vamoosed with the injury. I used to read, to lose myself in a book, when stressed. Sometimes I’d eat chocolate or ice cream, but small amounts because I had such strong self-control and knew pain in the stomach meant it was very, very full. I also walked, whether to shop at my local stores or just to process what was stressing me. No more. My brain injury kiboshed my reading, my self-control, my local shopping, and my walks. Oh, I tried to read but I’d crack open a book and read and reread the same page and never get lost in it. I tried to walk but fatigue stopped me cold. Because I had so much trouble cooking, a certain someone took over and served me as much as he ate. No more did my plate hold the smaller amount I habitually ate pre-injury. And no more could I stop eating, perceive my stomach was full — not until the plate was clean. I never cleaned my plate pre-injury, much to my mother’s annoyance. And then on top of all this, my pain, physical, emotional, and mental, was great; chocolate offered relief. Good-quality large bars of chocolate. My favourites were Green & Black’s bars, and these days, I vary between them and Camino’s 80% Panama bar (but now I eat only 4 to 6g in a day).

I gained weight.

For whatever reason, I noticed yet didn’t. No doctor noticed enough to guide me back to my normal weight. Friends and family, well, all I’ll say is thank goodness for Oprah.

One could count on Oprah beginning the year with a weight loss push. She filled her January shows with practical advice on how to eat better, exercise well. She was such a cheerleader that her inspirational motivation penetrated even the thick cotton batting surrounding my mind.

I lost weight.

I came close to a decent weight but not my old, lifelong weight. And then I began brain biofeedback. No one, but perhaps fellow people with brain injury and trainers whom I wasn’t in contact with at the time, knew that intense mental work equals no energy left for exercise equals brain screaming for glucose, more than even a university student — because not only does the brain require food for the increased learning but also to keep repairing the brain, to redo the connections the mental work is demanding.

Mental work equals weight gain.

Brain biofeedback was, in a way more intense than studying at university, for it was not only repairing or creating new pathways while I was learning but it was also forcing me to learn a new way to control a computer. I mean, who has controlled a computer game with their brain before? Not me!

I gained weight.

A lot of weight.

I also gained more water. Brain repair is stressful after all, and I also didn’t know that I had exercise intolerance. I looked like the Michelin Man, like a sick person on steroids.

I felt lost. I had no idea how to lose weight. I was eating well, exercising properly, staggering home exhausted after biofeedback, yet gaining weight.

Then biofeedback ended. I had more energy, a much better functioning brain. I got a new GP. He introduced me to his trainer, who told me about brain injury, heart, and exercise intolerance. He cut my exercise down to ten minutes three times a week, and I lost water and weight. The new GP reminded me of the GI Diet. I began counting calories, not only to lose weight but to retrain my brain to eat as much as my stomach can handle not what is on the plate. And I created, refined, and stuck with my hypothalamus fix.

My weight loss is so slow, frozen molasses could move faster. I still have a tendency to gain weight, well, water, if I exercise too much (e.g., walking partway between appointments because, again, the TTC isn’t working) or think too much or, worse of all for me, am subjected to emotional stress. I try to avoid the latter like the plague but sometimes tis impossible.

Brain Health

Twelve Years

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Every year, I say to myself this anniversary, I’ll be fine. After all, it’s been sooooo long since the day two drivers crashed into the car I was a passenger in and pushed us into the car ahead and injured my neck, shoulders, and brain. Such nice, good drivers Kimberley Best and Carla Marchetti were. They even apologized. No wait, they didn’t. Every year, as the anniversary approaches, my mood sours and the day itself is a mountain of anger, despair, and grief. Then every year, a few days or couple weeks later, I get sick with some virus or other, sometimes sick enough to be unable to do anything for weeks but watch TV. Some years I’m lucky, and it’s over by early February (or late January if it began just before the anniversary). Last year, the virus hung out until March. I decided last March that I’d had enough and would just give in and take the damn staycation my body and emotions were demanding in January post-anniversary.

I haven’t taken the staycation yet because my anniversary was yesterday, Sunday, and I’d planned to start near the end of January. I wanted to finish my novel revisions first too. I had a moment last week where I wondered if perhaps I should’ve planned for an earlier down time. But I got better, and I carried on with revising my novel. And then a funny thing happened.

Saturday went as usual for the day before my anniversary; I was not in a good mood, and fatigue  crushed me until about just after the time of the crash: 6:30 pm. Twenty-four hours to go. Sunday dawned sunny — outside and in me. Was I in some sort of hallucinatory state? Had all my emotions fled, leaving me in neutral? Would the memory sideswipe me later when I was properly awake?

Some years I hadn’t noticed the awful date, but my body and subconscious mind always did, leaving me wondering what was going on until I would finally remember. But that was not what was happening yesterday. I had decided to eat what I wanted to, do what I wanted to, and not pressure myself at all. Pain did burrow into my neck near my shoulder and back, but I used my pain control methods and went about my day. After lunch, I decided I wanted to work on the dialogue of my latest novel. I was still feeling good, emotionally up, and except for the relinquishing pain, physically normal for me. I dove into my novel, took several breaks, munched on chocolate but not much, basked in the sun, ate dinner, and put on my CES device for the evening session. I checked the time about 6:24, and I noticed the time in terms of how much longer to keep the CES on, but it didn’t register as almost the exact time of the crash. I resumed revising dialogue; new futuristic vocab kept flowing into my head. I didn’t remember that twelve years ago, exactly to the minute, I was on Highway 7 about to be pranged.

My body and emotions didn’t remember either.

Wow.

Amazing.

I’m free.

I hope.

The question I have is why now? Why this year? Is it because I’ve restarted physio and my neck is straighter and my lower back in less pain and I feel like my old injuries are being taken care of again, at last? Is it because I have a new neurodoc — a neuropsychiatrist at Toronto Western Hospital — who has referred me to a sleep specialist, is referring me to the guru of acquired brain injury (who, BTW, is booking in 2014!), and is actively guiding me in my psychological, emotional, and cognitive recovery as well as strengthening me in dealing with certain people in community care, not just passively listening and nodding? Is it because I have finished my pre-injury goal (writing and publishing Lifeliner) and my get-me-away-from-this-brain-injury goals (first journey of brain treatment and writing my first two novels plus the screenplay for Lifeliner)? Is it because I’ve written my first true new-me novel? (Brain injury kills the old you; a new you rises from the ashes.) Is it because I am not alone any more in my fight to treat my brain injury and to get back into society, back to working (writing), and I have a health care team of at least three people actively helping me now? Or is it the accumulation of all of those things? I’m not sure. But 2012 is the first year post-injury that doesn’t yaw before me like a never-ending off-course ordeal I must battle alone.

Brain Health

Brain Injury: the Government Ignores, the People Remain in the Dark

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BIST (Brain Injury Society of Toronto) was founded in 2004 and has grown to 469 members, as of this week’s Annual General Meeting (AGM). I looked around at the 50? 40? 70? or so members in attendance and was rather surprised. But as the AGM progressed I thought about those growing numbers and BIST’s new focus this past year on fundraising and awareness, as reported by the various committees and 11-member board.

But from the abysmal brain injury care in Ontario, you wouldn’t know there is an epidemic out there.

When I first joined, I had no idea who was on the Board and who volunteered, even though I had a good sense of who were the active members with brain injuries from falls, meningitis, crashes, tumours (no hockey). Today, members of the Board are making a concerted effort to get out to the meetings and making known who they are. And by the end of the evening, it struck me that like the Board, putting ourselves out there where we live and engaging is what we people with brain injuries need to do.

Everyone knows about cancer; breast cancer is the charity du jour. Half the population suffer from heart disease, and the other half know someone who’s had a heart problem. Rick Hansen has done a stellar job of bringing attention to spinal cord damage, and people in wheelchairs are visible representatives (even if that is not the reason why they must use a wheelchair). But unfortunately brain injuries are invisible, though plentiful.

The Brain Injury Association of Canada says “thousands of Canadians incur a traumatic brain injury each year the majority being young adults.

And so, as usual, we Canadians must look to the US for detailed stats (and that was true even before Prime Minister Stephen Harper nixed the scientifically sound and comprehensive look at our population, the long-form census). Every year, 1.7 million Americans sustain a traumatic brain injury. Using the ten percent rule, that means 170,000 Canadians have their brains damaged each and every year. And like Americans, twice as many men as women.

As I listened to the reports at the AGM, I thought how daunting the task and how needed to make people aware of brain injury and its devastating effects on the injured. Hockey fans are becoming aware, but only as it applies to hockey players and with incomplete understanding of its lifelong effects.

Sidney Crosby appeared recently with his doctors to talk about his concussion and their expert opinion that when he is one hundred percent better, it will be like he hadn’t had a concussion, that his risk of another concussion will be back to what it was before his two.

Hahahahaha!

How can they know that? There is no technology that can look at the brain in such detail so as to know the brain matter is one hundred percent healed and regrown, that there are zero changes in neuronal metabolism and structure.

The science is so new and still in the dark ages, relative to heart disease or cancer treatment, that to say we know with certainty the future and the risk is full of hubris. But then I’ve discovered too many doctors, particularly neurologists, are like that — think they know it all in the face of great ignorance, think they recognize brain injuries when the cognitive ones zip right over their heads — and so why would the population be any more knowledgeable?

Researchers are finding that people who have traumatic brain injury have a higher risk of Alzheimer’s, Parkinsons, and so on. Yet they cannot say if the long-term effects of brain injuries are different in people like me who’ve had active treatment for cognitive deficits. But to assume not is a dreamy, potentially dangerous assumption.

I’ve met people who’ve experienced bad bangs to the head but with no broken skull, maybe only temporary unconsciousness, which they’d shrugged off and if they saw a doc, told it’s just a concussion, watch for a couple of days, then should be fine. Yet when they hear about some of my difficuties, they go, “hey, I have that too.” They always thought whatever “that” was was normal. It isn’t. I never had these injury-related issues pre-car crash. Most people don’t. Yet they had an impact on these people’s lives, and because they never made the connection, they didn’t understand the problem, never mind how to heal it and improve their lives.

It doesn’t help that even if you recognize you need to see someone about it, you can’t in Ontario because of lack of funding for neuropsychiatrists, no funding for psychologists who are on the forefront of active treatments, and severe cutbacks to community care. When no one knows about brain injuries, except as hockey concussions, why would the government fund adequate care?

Crosby and his docs have presented his concussion as healable as a simple broken leg, just takes longer. Even when concussions are recognized as real injuries with bad effects on the brain, they’re still represented as happening only to hockey players and having no lasting effects, thus no big deal.

Yes, the AGM theme is right: we need more awareness to stop injuries, to have access to good treatment, and to save the lives of hundreds of thousands of the walking wounded.

 

Brain Health

Medicine Admits Concussions Bad but Still Doesn’t Understand

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I read an article in The Toronto Star recently titled “A Blow to the Head is a Big Deal” by Megan Ogilvie (8 April 2011), and I knew I had to read it. It wasn’t long before I was grumbling and had to comment on it. So here are some excerpts with my thoughts.

““The brain goes brrrrrrrrp and is temporarily out of order,” says Richards.

This massive electrical discharge is why people who have suffered a concussion are initially dazed and confused. The hit has obliterated their short-term memory.

“They can’t remember their name, where they are, what day it is, what they are doing,” says Richards. “It’s kind of like the brain has to reboot because the seizure has wiped the slate clean.”

I don’t remember being dazed and confused or even not knowing who I was. What I remember is after impact #1, I froze, raised my hand to protect my neck (as if that would work), and then started thinking again about the book I was in the middle of writing — Lifeliner. After impacts #2/3, I had an extreme emotional reaction. (Two impacts came from the shit drivers who rear-ended us, the third from being pushed into the car stopped ahead of us. I don’t know which rear-ender shoved us into it.) And I didn’t move until I was told to get out of the car.  Later, when we were told to move to a side street, I again stayed in the car; I had no interest in what was going on.

But that’s not the same as having no memory or awareness of what happened or what is going on. I don’t know why this myth of memory or awareness loss persists, especially when the injured person remains conscious, or perhaps the loss in me was a nanosecond, but certainly imperceivable to me or anyone else.

I will say though there is definitely diminished perception and awareness to the point that you may see but you don’t really take in what you’re looking at. It was like the day six years after my injury when I stood at Bay and Bloor (an intersection I’m very familiar with and had seen many times in the previous six years) looked around, and suddenly I was seeing it as if for the first time in six years. I just stood there and gawked.

The amount of axon damage is related to the force of a hit and — more significantly, scientists surmise — the direction of the hit to the head. One that catches a person on the side of the head, twisting it sharply to the side, creates greater shearing force than a hit that rocks the skull from front to back.

During impact #1, I was staring straight ahead through the windshield of the car. Because I raised my left hand to cradle my neck, during impact #2, my head was slightly twisted to the left. So I had two directions of force on my brain. Peachy. It’s probably what created more diffuse injuries than would be expected in a straight back-and-forth slamming.

When the brain rattles from a hit to the head, cell membranes open up and a biochemical cascade washes through the tissue and disturbs its precise chemical balance. Specifically, potassium floods out of the cells, while calcium rushes in.

The cells desperately want to restore balance, which requires a huge amount of energy. For a healthy person, this is an easy thing do. But a concussion mucks up a host of other chemical processes that affect how the brain produces energy.

The first problem is that calcium, in high levels, is toxic to brain cells. Normally, the brain would lower calcium levels by drawing on the power of mitochondria— the energy factories found inside all cells. But as the mitochondria work to reduce super-high calcium levels, they clog and don’t produce enough energy.

Let me tell you the fatigue from the brain injury and from treatments to heal it is unreal. Even brushing teeth can require a nap afterwards. (Makes you not want to brush your teeth, aside from just forgetting in the first place.) Everyone in brain injury care knows about the fatigue. But this is the first time I’ve heard a possible scientific explanation, though I had known it was something to do with the mitochondria (university studies come in handy!).

However, I decided to look into this research. So far Dr. David Hovda’s investigative work on the neurochemistry and treatment of  concussion seems to focus mostly on rodents or animals. That means this work is in its infant stages. That means he cannot mimic actual injuries that humans sustain in car crashes and sports, but at best approximate them with “controlled cortical impacts.” His work is exciting, but not yet applicable to humans in any real, practical sense.

At the same time, the brain is still seeking energy to restore its chemical balance, so it sends out an emergency signal for more glucose. Usually, glucose — the brain’s primary fuel — is carried to needy areas by an increased flow of blood.

But a concussion affects this process, too. After a hit, blood vessels constrict, making it difficult for blood to carry glucose to where it is needed most.

Oh my God! My desire for sugar — for things like pop, which I hate, or cookies — gets extreme whenever I do mental work or undergo treatments. (Otherwise my desire for sweets has dropped.) This connection became very clear to me when I began brain biofeedback treatments. After each session, I had this overwhelming desire to drink a can of ginger ale with sugar in it, not artificial sweetener. I could not resist it, and the fast downing of sugar always made me feel better. It was the only time I ever wanted to drink pop. Even today, if I’m more tired than usual (and I am always, always tired), and even if not hungry or needing food for my body, eating something will perk me up rather obviously. And, on a side note, doing things that increase blood flow helps too.

I have tried to discuss this with family, friends, health care people, anyone who can help me figure out how to feed my brain without feeding my fat because it is definitely not an empty craving but one that comes from my brain’s real need and because responding to my brain’s demands results in weight gain. This is also on top of the fact that brain injury does throw your internal functioning out of whack, something doctors simply don’t recognize.

I haven’t had much success.

I think someone has to come up with a way to get the body to send the glucose straight to the brain and bypass the fat stores — because the rest of the body doesn’t need it, it will snag the glucose and stuff it into the fat cells. The brain has to compete with the body for that glucose.

Dr. Hovda is on the right track perhaps with his ketogenic diet study, but again it’s in rats. No one seems to have studied this in humans, and certainly the medical community doesn’t even discuss diet in relation to brain injury, never mind the kind that can feed the brain sans feeding the body.

People who have a concussion will describe being overwhelmingly tired. This weariness is actually a neural fatigue, brought on when the brain doesn’t get enough fuel and must struggle to perform. Pushing through the fatigue is one of the worst things somebody with concussion can do.

“During this energy crisis, the brain wants to shut down and be very, very quiet,” says Hovda. “If you exercise the brain, or if you experience another brain injury (during this time), you will prolong the symptoms associated with concussion and extend the period of vulnerability.”

Well, I don’t know if we really know what the cause of the fatigue is. We understand its symptoms, have a visual concept of how it must be, but the mechanism details for fatigue in humans is not known. His statement that “pushing through the fatigue is one of the worst things” is theoretical, based on rat studies. How can he possibly know for sure?

If you don’t push through the fatigue, you’ll (a) be criticized and (b) won’t get the help you need. They talk about the energy crisis in this article as if it’s short term. It isn’t. It lasts years, decades. Sure, it gets better. But it doesn’t take much to land you on the couch and in front of the TV again.

Ironically, the one thing that caused a massive energy drain in me — the brain biofeedback — gave me way more energy in the end than the do-nothing approach had for the previous five and a half years.

Also, we know that basal metabolic rate consumes the vast percentage of our energy. In other words, we consume most of our energy needs just by living. Exercise adds very little to our energy consumption. Have you ever checked out how much effort you have to make before exercise makes any sort of indent into increasing your energy consumption — aka calories burned? Five minutes a day ain’t going to do it. Thirty minutes will. So why would the brain be any different? It’s already consuming vast gobs of glucose just to run your heart, lungs, digestive system, hormonal system, eyeballs, hearing, touch, taste, smell, etc. etc. How much extra energy does it take to think? To read? To write? Is it the same as exercise, that is, five minutes of reading isn’t going to make much diff but thirty minutes  will?

I know from experience that in the beginning, five minutes of reading was like studying university texts for five hours. But does that mean in order for your brain to heal, you should do nothing? Isn’t it more likely that it means you need to start slow, build incrementally, be patient with yourself until you do reach normal levels of metabolic, hormonal, and cognitive functioning in areas like attention and memory. It seems strange to say that you’ll perpetuate the potassium-calcium cascade as long as you do anything but stay in bed because if that’s true, your brain will probably die in no time. That makes no sense.

This reminds me of the old adage that after surgery or when injured, you should stay in bed and rest. But we know now that the best thing to do with post-op patients is to get them up and at em practically as soon as they come out of the anesthesia. We know that moving the operated on or injured part — wisely of course and incrementally — accelerates healing. So why not the same for the brain? It is part of our body after all.

Currently, the only treatment for concussion is physical and cognitive rest. Doctors rely on standard neuropsychology tests to help determine the severity of an injury and whether a concussed brain has healed.

That’s old knowledge. Scientists in the US have already learned that progesterone has a positive effect, at least in severe brain injuries. They also know there are hormonal imbalances, like cortisol, for instance. Plus naturopaths already know that omega-3 fatty acids help the brain function better, as does physical exercise. Smart resting is good, but doing something to help the brain recover is better. Why do they not consider studying progesterone in concussions? Why not consider increasing omega-3 fatty acids in the diet because we know those are important in brain function? What about suggesting temporary increase in cholesterol in the diet to help regrow damaged myelin sheathes or research ways to regrow neurons such as what Dr. Michel Rathbone is doing? Or how about prescribing an exercise plan that takes into account the fatigue and sympathetic-nervous system issues?

But that would require some thinking, spending time with patients, and talking to psychologists on physicians’ part, and God forbid they do that.

As for standard neuropsych tests — pffft is what I say. All those tests said I was hunkey dorey. Yet I had to be reminded to brush teeth, feed the dog, make lunch before my stomach started screaming, make phone calls, what to say when I called people. Yet I slept for 12 hours. Yet I found crowds and groups overwhelming and would hide in the bathroom. Yet I couldn’t follow or remember what I was reading. And so on. There was way more dysfunctionality than that. And I’d get stupid comments from friends like “I never remember what I read either” — oh, so that’s why you cannot learn anything and why you cannot build on your professional knowledge, eh? Not.

It’s easy to ace those tests, not so easy to function in the real world. It’s even easier to ace those tests when they’re given to you repeatedly, as psychologists well know, as was done with me. Seven times in seven years. Those tests will never tell you if the concussion is fully healed. Idiots.

While the majority of those who suffer a concussion will get better in one to three weeks, about 15 to 20 per cent of patients will have symptoms that linger for months and sometimes years. Scientists suspect these patients may have a genetic predisposition that makes their brain more vulnerable to concussion.

The specialist who diagnosed my mild traumatic brain injury (mild! Such a misnomer!), got a complete history of my past. Although it had been nine years since a previous car crash and I had not had any clinical signs of a concussion, he said the long-term ramifications of that impact predisposed me to a brain injury.

So I’m not so sure about a genetic link.

I’m much more sure of all those little bumps on the head, those back-and-forths in fender benders or sports hits, setting you up for greater injury when you’re hit hard. But we don’t remember all those little ones, and when your memory is screwed, even less likely to remember and tell the docs.

If I’m ever hit again, my chance of severe brain injury is now much, much higher because of my previous injuries. Yet I wonder if all those brain biofeedback treatments and my regular use of audiovisual entrainment as well as acupuncture treatments has put me back into normal risk territory? I hope so, and I pray I never find out.

Researchers are also trying to figure out why only some people are affected by an accumulation of concussions by teasing out the link between repetitive injuries and chronic traumatic encephalopathy, a progressive degenerative disease that seems to mirror the biology and symptoms of Alzheimer’s. Connections have also been made between accumulated head trauma and devastating diseases such as Lou Gehrig’s and Parkinson’s.

This probably has a lot to do with what kind of treatments they had received or not for each injury, whether they had support or not, what their bad habits are, what kind of diet they had before and after injury, if they were given an exercise routine appropriate to their injury, if their metabolic and internal functioning issues were recognized never mind addressed. There’s an awful lot of stuff that affects long-term outcomes, stuff that the medical and research community are ignoring, stuff that’s right in front of their eyeballs if only they’d open their lids.