The Hidden Secret of Brain Injury: Hypothalamus Dysfunction

“I’m going to get off the atenolol,” I told my GP, who promptly laughed at me. Well, I might, just might, have the last laugh.

I was put on atenolol (a beta blocker) 7 years after I suffered from a closed head injury and began 7 years of 120+ heart rate, of yo-yoing blood pressure, of an overactive sympathetic system, high body temperature, water retention like I was on mega steroids, and other stuff. It’s the shhhhh secret no one talks about, no doctor is interested in, no non-brain injury specialist gives a damn about — the fact that your internal functioning is totally f’d up, and it’s extremely unpleasant, and one January day became dangerous to me.

I actually got the first clue at the crash scene. I had had a strange, rare disorder whereby my body didn’t produce enough adrenaline and norepinephrine either normally or in response to stress. So under stressful conditions, my blood pressure dropped like a stone. I was concerned, so the paramedic took a reading. He said it was normal. Well, for me, normal was high. But the closed head injury not only had instantly fixed that abnormal stress reaction, it had taken it to the other extreme and it had slowed down my cognitive processing so I didn’t know what to do with this odd information. Of course, the paramedic thought female, civilian, what does she know what normal blood pressure is, and yeah, her heart rate might be a little high, but she’s just been in a four-car crash. I signed the papers refusing hospital care and went home to rest my hurting neck.

A couple of months later, a psychologist working with my physiatrist told me that my sympathetic system was on overdrive, and my parasympathetic was underworking. I was pretty much in permanent flight and fight mode. A year after that, as part of a stress management course at neurorehab, my stress levels were measured via a sophisticated questionnaire as part of a research study (not via blood tests), and I tried not to get freaked out by the fact that I was in the top level with a rather high chance for death. So high, my excellent stress management skills were insufficient. Peachy.

On to that summer. At that point, I noticed I looked distinctly like the Michelin Man: puffy, round faced, fat feet, no bones showing. The water retention — because that is what it was, not weight gain at that point — was uncomfortable, worse with heat, and though sometimes got better, never left. Worst for me, it covered my weight gain when I started eating in response to stress as I could no longer get lost in books. It was also years before I noticed that my appetite was abnormally high in a way not related to stress or emotion. I sort of noticed too that my skin would develop hot spots which were red and if not put under cold water would start to puff up and spread (it was actually years before I processed the fact that they were literally hot, and of course none of my health care team noticed). Lovely. To top it off, I had chest pain so bad, like an elephant sitting on it and crushing my ribs, I told my OT one day that I would not know if I was having a heart attack. She told me I was not alone. The only one who dealt with that was my acupuncturist. If not for her, I doubt the pain would’ve lessened to tightness and pressure. I also had shortness of breath; I’d do things like answer the phone and pant away as a result. One would think I was out of shape, but as soon as my physiotherapist gave me the green light and exercises, I was moving.

Fast forward to SARS. My psychiatrist (no, not the lying-on-the-couch-yakking type, but the head-injury-care type) was at Baycrest. Me and the old folks lined up to have our temperature taken before being let into the facility for our regular appointments. I noticed my temp was higher than normal but not at minimal fever level, so I was always let in.

That same year, my GP tried once again to have a cardiologist look at my heart. Echo was fine, Holter was fine (well, yeah heart rate a bit fast), blood pressure seemed OK. As I said it yo-yo’d, so one day it’d be 150/(some number), the next 110/70, high-normal for me. Because of the crimp SARS put into regular medical care, nothing ever happened because I was banned from entering the hospital where my cardiologist worked.

Fast forward to 2006. I’d been doing brain biofeedback for about a year. It is an exhausting, amazing treatment for the cognitive aspects of a brain injury, things such as concentration, memory, writing, reading, persistence, stamina, emotional stability, open awareness, etc. They started doing HRV (heart rate variability) work at the beginning of my treatment sessions. The idea was to relax the body and mind, get the heart rate rising and falling in sync with deep breathing, before commencing treatment. The thing was my HRV looked like someone having a spastic attack when trying to draw a sine curve or had simply lain down flat. I had read that there was some hypothesis that in people with brain injuries, if you put the emphasis on cognitive rehabilitation, then the physical body suffers or cannot heal as well. That might explain what happened next.

In early 2007, I had an extreme water retention reaction: the inside of my mouth swelled up. I went to the ER. The person who accompanied me was both fascinated and horrified by the appearing-disappearing hot spots on my face. The doctor and nurse were nonplussed; they probably thought it was a food allergy but I was too dumb to know. They prescribed me prednisone for 5 days and gave me the first pill. Bad idea. But I took it. It made no effing difference to the edema because, of course, it wasn’t from a food allergy. They gave me Benadryl. It calmed my skin down and knocked me out. But I had to stop massage because the friction on my skin created a really, really bad reaction. Every morning and evening I had to calm my skin down with cold water and melaleuca-oil cream. I swelled up with water so much it was like an instant 10kg weight gain. I began to take cold showers (cold showers in winter, with the heat down cause I couldn’t afford the gas bills, fun wow). I slept with my head elevated  — when I slept. My symptoms were always worse at night. It terrified me. I finally stopped pretending I was normal and got rid of duvet and blankets I was so damn hot. I also came to realise that my brain doesn’t regulate body temperature well: if my place is cold or hot, not 21-24C, I become fatigued and symptoms become worse.

My parents paid for in-home meditative yoga sessions to try and calm my mind down so as not to aggravate my symptoms. I saw my old endocrinologist only days after the ER visit; he took my heart rate and immediately insisted I go on atenolol. He was the first physician in 7 years to notice that a 120+ heart rate is not normal and not good. Within 20 minutes of taking it, I felt my stress drop. I don’t know exactly how to describe it, but it was like a calmness overcame my mind, and my body let go in response. I learnt later that atenolol is one of the beta blockers that has this anti-stress side effect, and that’s pretty much why I’m still on it.

It took a year and a half for me to slowly de-swell to pre-2007 levels and to become cooler. Things that I figured out on my own: cut out salt, as salt increases water retention. Cut out pepper and hot spices like chili, cinnamon, and ginger because they increase heat. Eat an egg a day as it helps stabilize the body, as I understand it in my own mind. An egg is one of two perfect foods; it has all the essential amino acids and all the essential fatty acids that our bodies can’t synthesize but require for good functioning and repair plus the latter are needed by the skin for elasticity and moisture. Drink ice water; suck on ice. I tend to push myself, but the fatigue from the brain injury often managed to stop me cold. Pain hurts; fatigue incapacitates. It slowly started to dawn on me that my overactive sympathetic system was draining me too, so I used more AVE (audiovisual entrainment) sessions that would calm me instead of my preferred wake-up-be-alert sessions so I could write and create. I also used it less as I was concerned that it was forcing my brain to work and heal at a rate greater than it could take, like being at the tail end of back-to-back marathons.

Over many months, I adjusted taking the atenolol to very early in the morning with Gaviscon to recover from the night’s horrors and early supper hour so (a) it won’t upset my stomach and (b) won’t either wake me up in the middle of the night or put me to sleep when I’m supposed to be awake. Being like a vegetable during the news is not so bad, as I then become less fatigued afterwards and can answer e-mails or do other normal things for about an hour or so and then sleep better. The fatigue side effect is what really makes me hate this drug. My body’s need for it varies day by day and even during the day, so if I take it and I don’t actually need it, I’ll be unable to get off the couch for the fatigue. Fatigue on top of fatigue is deadening. This is something no physician has ever spoken to me about, even when I bring it up. They just shrug their shoulders like they don’t know what to do about my varying needs and seasonal changes and that the fatigue is no big deal, instead of using their noggins and thinking about it. I find I need less in the summer than in the winter, sometimes not at all in the morning. Go figure. The docs sure can’t.

Meanwhile I saw more cardiologists, had different drugs recommended (didn’t take them as they don’t affect stress levels, and I knew this was the big advantage of atenolol), and I was diagnosed with diabetes.

The next big thing to make a difference was when I met the trainer last summer, who told me I was exercising too much.

He cut my exercise by two-thirds, and he drastically reduced the aerobic portion of it. He said we need to get you sleeping flat, something no doctor ever thought important. I love him for that. So we built back up over time to half of what I used to do, and I now mostly do weights and yoga. I sleep flat, fully covered albeit sans duvet. He told me that because of the changes caused by traumatic brain injury, many athletes cannot return to athletic endeavours, and that was true for me too, albeit at a non-athletic level. The most amazing thing about his regimen was that my shortness of breath and tight chest almost disappeared. No longer did I eat breakfast, pant, pant; answer the phone, pant, pant; write a blog post, pant, pant. Awesome.

Through all of this, I strived to understand what was going on. I have trouble coping if I don’t know and don’t understand. Over the years, I would figure it out and then forget, then realise and forget again, that these symptoms were all related to my hypothalamus and/or pituitary gland. I even saw a pituitary specialist who mentioned that she’d seen the same symptoms in a stroke patient but hadn’t done anything and after several years, it had resolved itself. She never knew why he had the same problems and blood test results as me and didn’t seem to be curious about it either. Well, that did it for me. I was tired of waiting for my brain to heal, if it ever was going to do so in this respect. The specialist, like almost every physician and surgeon, knows little about the hypothalamus (a pituitary endocrinologist not knowing did shock me though since the hypothalamus controls the pituitary), only physiologists or some researchers in the US and Europe seem to have a clue. The level of ignorance over what are considered well-known hormones and how medication affects blood test levels is astounding, never mind the more esoteric hormone testing. And here in Canada, they don’t even seem to know how to test for adrenaline and cortisol. Everyone tests it differently. Give me a break.

So I decided, screw the docs, screw the blood tests, I’m going to fix my hypothalamus myself, living like this is beyond unacceptable. And I began my year-long-plus journey for an answer with a long talk with my father about the basics of this brain part and the action of stress. (A side note: doctors older than about 60 know more about the basics than anyone younger as they studied more physiology and anatomy; today, those are pretty much crash courses. Serves us well, eh?) I thought about the sources of my stress: certain emotional situations that centre around disrespect, cognitive challenge, and physical challenge. I thought about how there could be two reasons for the hypothalamus’s hyperactivity: either I’m under extreme stress or it’s reacting in an extreme way to stress, including normal stressors like walking. Since my symptoms are worse at night, a time that typically is less stressful when the sympathetic system calms down and the parasympathetic increases but clearly was not so for me, I decided it was the latter. If it is reacting at the same level 24/7 as if I have a constant level of stress, then when my stress drops naturally at night, its reaction will in effect be too strong for what is really happening. Also, the hypothalamus is driving my sympathetic system to always be on. I spoke about my hypothesis to a fellow brain injury survivor, who agreed with the direction of my thoughts. And today, I just might be succeeding in fixing some aspects. I’m not there yet, but I’m far enough along that I’m ready to write about it. But first I’ll write about the hypothalamus.

See more Shireen Jeejeebhoy brain blogs.