Oct 042010
 

“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.

———————-

Note: I write this to share this information with others and to get the conversation going, but I do not write it to suggest that it will work for anyone else.

Part 2: The Hypothalamus and Brain Injury

Part 3: A Hypothalamus Fix for Closed Head Injury?

Part 4: A Hypothalamus Fix Followup

Part 5: A Hypothalamus Fix: Second Followup

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  • nice article… you have described about brain injury very clearly…… I appreciate.. Thanks.

  • Great post for this blog . When you make a claim for injury compensation in accident, there are certain criteria that you have to fulfil and distinct procedures to follow. Remember, you first take a advice from the solicitor for the compensation claim.

  • Brain injury can cause a host of physical, cognitive, emotional, and behavioural effects, and outcome can range from complete recovery to permanent disability or death.

  • Very nice article…. very well explained and informative… Thanks for sharing this.

  • The fact that you are looking for the best way to handle your claim, means that they can offer you the ideal solution, because they are specialist brain injury compensation claim solicitors.

  • Grottbags

    Great article very informative!!
    I really hope you find a cure for this!! I can’t imagine how hard all of this must have been for you and how scared you must have been in the begining.

  • A cure would be super! But until that day, good listening and management is something everyone with these kinds of issues should receive.

    Thanks!!

  • Pingback: Mental Work Up + Exercise Staying the Same = Energy Way, Way Down with Brain Injury » Shireen Jeejeebhoy, Author()

  • mrchickenkievs

    It’s interesting that you suggest the neurologists aren’t interested in the ill effects you have had with brain injury. On my one and only appointment with a neurologist post surgery, I mentioned that I felt fatigued and he wasn’t remotely interested- it was only if I had encephalitis or some exotic symptom which was terminal that he thought merited his attention. If I had encephalitis of course I would have already required a major medical intervention, in which case he would have already seen me since surgery. The meeting therefore served no purpose other than for me to praise their efforts for saving my life. My GP also tried to blame my impotence on age, when I was 37, thus absolving him of any further need to intervene. So you have a double whammy in my case of the cause and some of the debilitating symptoms being swept under the carpet.

    I think the need to understand the cause of a medical problem is probably universal, particularly when despite following whatever protocol the medical profession suggests problems persist. It is only natural to try and improve something particularly I think when it threatens to ruin your professional working life, through mood swings or in my case crawling under the nearest stone. I’ve no doubt I ultimately lost my job because I didn’t make an impression on our new CEO, because of my timid behaviour.

    I was somewhat fortunate in coming from a Social Sciences background and knew about things like scientific paradigms and the fact that the medical profession like any profession tries to create an air of unassailable mastery of their subject, when in fact they can only cure about a quarter of all known disease pathologies. Basically they will come up with a diagnosis that suits them, and will come up with sometimes tortuous and lame diagnosis to problems they don’t fully understand. In short I knew that they didn’t have all the answers and that other indigenous health systems such as TCM might have something to offer on the subject.

    But this idea of knowing what the problem is, is crucial if nothing else than to allow you to put some perspective on things, reorientate yourself and possibly even calm yourself down. It is nearly a year since I lost my job and I think the rest has done me no end of good. The most recent and pleasing development has been that when sleeping on my right hand side, I no longer get a pain beneath my skull when I wake up. The right hand side was where I was drilled to get to the colloidal cyst in my third ventricle. I still get nightmares when I sleep on the right side, but at least I’m not in pain. Admittedly it was never a severe pain, but it was disturbing.

    I had always thought for several years that it would only take a couple of months off work to restore my levels of balance and calm, following the experience of a colleague who took time off for stress. However I couldn’t take the chance of taking that time off and not being restored because I would just get a name for being unreliable, if I needed to take more time off. Now I’ve discovered it takes at least a year and no employer could afford to keep the door open for that length of time. What has also helped is to know that I can get things like a full night’s sleep and my over reaction is to do with things like the hypothalamus. I didn’t get a full night’s sleep last night but at least when I didn’t have to worry about work or debate what was the underlying cause of my problem, and I got back to sleep.

    It was only after I had been off a couple of months and I realized I still wasn’t getting a full nights sleep that I tried experimenting with a few naturally occurring substances to get more shut eye. I started with Montmorrency Cherry Juice which contains 5-HTP or the amino acid tryptophan, which is a precursor of melatonin the neurotransmitter that is involved in sleep. I then graduated on to 5 HTP itself and generally find that this helps with sleep. 5-HTP is also used to produce serotonin, a lack of which might account for some of the down episodes in your mood swings. I’ve also tried things like taurine to calm my brain down, but sometimes found my brain didn’t wake up the next day until about 3 in the afternoon- so use that avenue with care.

    I now realize I have been supplementing for about a year now, but I think it has helped. I was always thinking along the lines of using supplementation to get my erectile function back, but suspect I got the supplements right and the pathology wrong- to a degree. I kept reading that stress effects the various neurotransmitters that are needed for erections including serotonin and acetylcholine. And since my short term memory was also being hampered and acetycholine is needed for memory, I thought I would get a double whammy of improved memory and erectile function.

    However choline is also essential for building up neurons the basic web like structure of the brain so potentially anything that allows the brain to heal or rebuild, is going to have an overall improving effect on any damaged area, including the hypothalamus. I’ve got a variety of brain building block nutrients including top of the list phosphatidlyserine which is also a key ingredient in managing the feedback mechanisms in the brain needed to cope with stress. I’ve also got DMAE and Acetylcarnitine in my medical cabinet because they are also needed to produce acetylcholine, as well as assorted B vitamins needed for brain nutrition. Patrick Holford’s book Natural Highs is my bible on the subject, but I’ve confirmed his research with other authors and physicians too.

    The other aspect to healing which I think might be helping is by supporting the bodies naturally repair mechanisms. I noticed about two months after leaving work, that my cuts and scrapes were taking an excessive time to heal, and I wondered what the mechanism for healing might be, and whether stress slowed that process up too. I discovered that arginine needed specifically for heart health and essential in the healing process (and erections in endothelial membranes) can be reduced by stress. Like a lot of nutrients stress needs them for the fight and flight mode, so when you’ve gone through that a number of times you become depleted. The same goes for basic B vitamins and magnesium both of which can calm the brain down. Even the best diet is unlikely to replete the vitamins and minerals faster than they are being lost by stressful behaviour.

    Vitamin C is also essential to the healing process, and large amounts can reputably assist with heart disease. I can’t help but feeling that this is what has stopped the feeling of pain I had in the wound where the cyst was removed in recent months- but I can’t be sure- I haven’t done a double blind study with 100 patients with a similar problem. And the medical profession and the pharmaceutical giants aren’t going to advocate humble vitamins as a solution for anything- are they?

    So taking the brain’s building blocks, phospholipids into account- choline, DMAE, Fish Oil, Acetylcarnitine, phosphatidlyserine- healing agents such as arginine and vitamin C- calming agents such as b vitamins and magnesium and precursing sleeping neurotransmitters such as 5 HTP into account, I’ve pretty much got on top of the worst of my problems with my hypothalamus- I hope!. The other two main supports have been acupuncture and the year off, I have had. I’m not totally cured, but I think I have established a series of protocols which not only make sense, but seem to work.

    My problem with pharmaceuticals is that they are largely there to sit on top of symptoms and not designed to tackle the original problem. My GP wanted to give me antidepressants, which would have increased my serotonin levels- but to what end? Would it have repaired my hypothalamus? The medical profession isn’t interested in remedies that work with the bodies natural healing mechanisms. You will find that most drugs actually intervene to prevent a natural process from taking place. Viagra prevents PDE5 enzymes from breaking down, and SSRI’s prevent serotonin from being broken down- both entirely natural processes in healthy people too. A number of people I know are addicted to their antidepressants, and a cousin of mine on antidepressants was recently found drunk lying in her own urine. My relatives shun her as a case that is beyond redemption, and I suspect the drugs if she is taking them are making her worse. If she is not taking them presumably she has good reason because they make you lack empathy and feel alien. Not great advertisements for the drug!

    The other issue I have had, which your blog has allowed me to focus greatly is to get to the source of the problem. I always thought that my stress was a form of PTSD, and that stress in of itself had health repercussions, which needed to be tackled. I found the idea of adrenal exhaustion explained my ED, fatigue, lack of sleep and diarrhoea. However since the latter only lasted for a short time a year after my operation, I had to explain my overall symptoms via another mode. I came up with the fact that stress depletes neurotransmitters,and that also explained lack of sleep, lack of erections and fatigue.

    But I was never completely comfortable with either explanation. It was my acupuncturist who said my problems were related to stress. I was however I thought not stressed enough to lose erections 3 months before my operation in 2005. If my problems with stress were psychological I certainly was stressed enough after my operation to be impotent, but I never dreamt of my operation or had a single point of traumatic stress to have flashbacks or anything like that. It wasn’t just stress Per Se it was clear that I was perceiving events differently than other people around me, and even a casual glance by someone could be seen as a threat. I also noted that it wasn’t just my ability to become aroused that was the problem it was a general inability to fantasize about sex, without becoming distracted or linking sex to some stressful incident.

    In other words it was something about my brain that was compromised, and whilst I always felt that it was linked to my cyst, I couldn’t find a link online that supported that theory. About 3 months ago I found a link to the uuwell site written originally in Korean that spelled it out loud and clear, impotence accompanied cysts in the 3rd ventricle. It took a couple of months for the idea to percolate down into my brain that this could be linked to my ongoing problems. But sure enough I did find people out there who had problems relating to their cyst and you linked this to problems with their hypothalamus, and that these problems were linked to perception of danger, impotence, memory problems as well as a range of issues I didn’t have.

    Any theory like the ones I have had to throw out relating to adrenals and neurotransmitters falls down on the fact that you either have or do not have the full range of symptoms. So I wonder whether the fact that I do not have the range of symptoms that you display means I don’t have problems with my hypothalamus? The first thing that springs to mind is that damage can be localized which means that considering the size of the hypothalamus, my trauma might have only effected those areas associated with stress, exercise, memory and impotence. Secondly your injury might have effected other brain areas, and some of your symptoms might be secondary symptoms related to being in the fight or flight state for so long. It is almost impossible for us lay people to make clear distinctions between primary and secondary problems associated with brain injury I suspect..

    However in my case you would expect a doctor when presented with two serious problems at one consultation, impotence and headaches would attempt to make the link not “hit it and split it”, say they are not related and one is not even a symptom of anything-just age. Secondly on returning a year after surgery you might expect he would look at his notes and might make some connection with a major trauma that his patient underwent in the last 12 months and the symptoms he is displaying now. However on this second trip he merely allowed me the chance to get 3 words out (something like “fatigue” and “not myself lately”) before he pulled a depression questionnaire from his desk and interrupted my analysis of events. In other words you need to go into a consultation with a better idea of what the problem is than the doctor otherwise they will lead you down the first path that comes into their head.

    That particular consultation ended in farce because as soon as I mentioned the contradiction in one of his recommendations he literally turned on me like a petulant child. He had told me the year before that I should only give weight training up for a year and now he was telling me that I should give it up for life. Now I wouldn’t have been aware of this change of advice had I not come in to discuss my fatigue, so surely if weight training was now so bad for my skull cap, I should have been told about it at the first meeting, or contacted as soon as new evidence suggested I shouldn’t do weights?

    Not only that I was now leaving with another reason to be paranoid, and exacerbate my stress further. I now saw myself as a potential murder victim to the first man who threw a punch at me. Unfortunately as the business I was part of began to fall apart, I got more and more stressed, and during a period when we weren’t being managed by a specified supervisor, the vacuum was filled by a guy who started to bully me. Normally had I been more assertive, and not worried about my skull cap I would have stood up to him. However I just thought even if I stood up to this guy some of this “bigger” colleagues would step in and one of them would throw the fatal punch. So ultimately although having been an integral and important part of the organization and being devastated to be laid off work, I was also desperate to leave.

    I saw being laid off as the route to destitution, and of course not knowing how much energy I had or how much stress I could tolerate in a new position, was excessively worried about what the future would hold. Anyway I have coped in the interim and got better, thanks in part to the fact that in my paranoia about losing my job, I took out unemployment insurance. I only really survive by thinking the skull cap is stronger than my GP thinks, rather than believing that no one will ever bust it. I have read of a former world boxing champion who survived ten world title fights after his skull cap was replaced after surgery, but I believe his replacement was metal. I’ve never had the courage to seek out another professional opinion about the strength of the skull cap, as I have to take into account how devastated I could be by negative news.

    My ideal world would be one in which my skull cap is deemed to be as sturdy as the rest of my skull (though as someone pointed out to me any blow to the skull is likely to be fatal) and where I get my sexual function back to normal. The other problems I think I can cope with.

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