Oct 202010

As I wrote earlier, I had suffered from various metabolic issues that the medical community was either unable or unwilling to understand and to treat. Over the years, I sought understanding, using what I remembered of my pre-injury knowledge of physiology, neurophysiology, and research skills. As I got better cognitively, especially this past year with more spontaneous healing that restored some knowledge, it became clearer to me that the problems stemmed from the hypothalamus, rather than just the pituitary, and I came to a decision: to fix it myself. This is the last part of a three-part series on the hypothalamus and brain injury or closed head injury.


A closed head injury somehow alters the functioning of the hypothalamus. The question is, is the body responding normally and chronically to an extreme stressor(s) or is the body responding in an extreme way to stress? Given that my need for atenolol increases at night and my symptoms are worse at night, a time when stress drops, I concluded that it was the latter. Furthermore, in my mind, it seemed that the issue was low serotonin levels in the hypothalamus and that generally speaking, treatment needed to reset the hypothalamus to a normal, balanced state. The beta blockers I was on only controlled some of the symptoms, and with a half-life of 6 hours, required a “top-up” dose at midnight and/or a morning dose about 5:00 am, further interrupting already fractured sleep. In addition, beta blockers are known for their fatiguing side effects; sometimes it’s so bad, it knocks me out for the whole day. Fatigue on top of brain-injury and fibromyalgia-induced fatigue is not good, and it diminishes any sense of well being.

I needed a treatment that addressed all of the symptoms, did not cause added fatigue, improved sense of well being, and allowed me to become more functional so that ultimately, combined with other therapies and improvements, I could reintegrate into society and become a productive contributing member of it. I decided to do a single-subject research study on myself to gauge the effectiveness of Audiovisual Entrainment and Cranial Electrical Stimulation on hypothalamus function. I call it the “hypothalamus fix.”


On 16 August 2010 I began using the sub-delta session of Mind Alive‘s Audiovisual Entrainment (AVE) unit almost every night, with some nights off. I then began using it nightly on 28 August 2010. This session emits visual pulses from 0.5 to 1Hz and back again, along with binaural beats, for 24 minutes. It is a passive session and does not entrain the brain. I kept both the auditory and visual intensities at 4. Any lower on the visual intensity, and I found it had no effect. There is little research on the effects of this session but what evidence exists shows it calms the hypothalamus. That is why I chose it. I also decided to use it just before going to sleep in order to facilitate falling asleep.

About the same time, I began using the Oasis II Cranial Electrical Stimulation (CES) device from Mind Alive. This device directs a microcurrent, through clips attached to the earlobes, into the brain. It has three settings: Sleep at 100Hz (short pulses), Relief at 0.5-3.0Hz (long pulses), and micro-TENS at 0.5-3.0Hz (short pulses). Being unfamiliar with the device, I experimented with the various settings before settling on a pattern of use that seemed to have an effect. I used the Sleep session every morning, beginning on 17 September 2010, right after awakening, which varied from 5:30 to 9:00 am (depending on how fractured my sleep was through the night) for one hour at the highest point of the low intensity level (there are four intensity levels, each of which rises in intensity as well).

A month later I began experimenting with evening times. From 16 October 2010 on, I used the CES device nightly at 10:00 pm for 30 minutes at the highest point of the low intensity level. I also upped the intensity level of the morning session to the lowest point of the second intensity level.


I was looking for changes in body temperature, water retention, sleep, and skin health and a reduction in the dosage of atenolol. (I am not equipped to take any objective measurements, obviously.) I should note here that typically, I need twice the dose of atenolol in the winter than I do in the summer. Beginning this regimen in the summer gave me a heads-start to hopefully ensure I didn’t have to increase my morning dose as the weather got cooler, from either 0 in the heat of the summer or 12.5mg to 25mg by January. Evening dose has remained consistent at 25mg for the last 3 years.

After three sub-delta AVE sessions on 16- 17- and 20 August 2010, I began to be cooler. By the fourth session on 21 August 2010, I began to fall asleep near the end of the session. And overall I was falling asleep within about 30 minutes (though it’s hard to be exact when you cannot use objective measures like a sleep study), instead of my usual 1 to 2 hours. After the 6th session on 25 August 2010, I started turning the volume down on the television  (volume is not a function of deafness but of comprehension). By the 7th session on 26 August 2010, my speech became more animated. Speech improvements are usually the first thing I note whenever I start a new treatment modality.

I had been using CES sleep alternating with relief at various times beginning on 13 August 2010 to see what the effects were. Even though use was not daily or sometimes two or three times a day, depending on pain levels, and variable, by 5 September 2010 I was feeling calmer after use, and I had also begun dreaming again. On the second morning I began to use the 1-hour Sleep session consistently, the edema or water retention started to go down, as evidenced by looser rings, a thinner face, thinner nose, and being able to feel my bones from my shoulders to my knuckles to my feet. By the third session on 19 September 2010, I reduced the morning dose of atenolol (normally 12.5mg). However, that smaller dose was still too much as it put me to sleep. Overall night-time sleep was becoming more consistent, including at times wake-up time. By 21 September 2010, my neck thinned and began to show a normal hollow at the base.

On 30 September 2010, my acupuncturist confirmed that I was significantly less hyperthermic, though still producing some heat. And she noted my mood was elevated; for the first time in over 10 years, I looked happy. She recommended reducing acupuncture frequency. However, about the same time I became aware that I had started to forget my regular daytime AVE sessions of alpha and beta waves; I was becoming more and more distracted. I resumed those sessions on 7 October 2010.

On 4 October 2010, I had my first hot shower in years and years, and my skin did not react nor did I overheat. Normally, my skin develops hot spots, which turn red and swell up and spread unless I pour cold water on them and moisturize with melaleuca-oil cream. Having a hot shower with no need to cool my skin down is a very big deal.

There was a hiccup in my study as the outside temperature dropped and my home got cold the first week of October. Environmental temperature affects my internal temperature as my body cannot regulate its own temperature very well. The optimum environmental temperature for me is about 22C. With each degree below 20C or above 26C, I retain more water and become hotter, yet I can at times feel the outside cold (or heat). But because of my skin reaction I cannot wear long-sleeved shirts, only loose sweatshirts and T-shirts. I also become more fatigued, reducing my functionality.

On 7 October 2010, I saw my behavioural cardiologist who recommended sticking with this therapy for 3 to 4 months to fully assess the effects before trying anything else.

On 8 October 2010, the evening atenolol dose of 25mg was suddenly too much. It knocked me right out. It was very unpleasant to fight sleep for 6 hours — I cannot nap otherwise it interferes with my night-time sleep. I reduced my atenolol a bit and experimented with adding an evening CES Sleep session. I tried 8:00 pm, 9:00 pm, and 10:00 pm. The 10 o’clock time seemed the best, otherwise with a reduced atenolol dose, I had started to wake up again too warm and with increased water retention.

Currently at this stage of my single-subject study — 20 October 2010 — I remain cooler and have markedly less water retention. I also have less shortness of breath. This kind of shortness of breath has nothing to do with my lungs as they are clear. I am not however, back to normal on these three indices. I am sleeping better, though have a long way to go to have normal sleep. I am sweating at more normal levels. My thinking is clearer, though processing speed remains the same. My skin is better to the point that I can wear long sleeves again and have the occasional hot shower. The results remain uneven on that score, but overall my skin is less reactive to allergens or stimulations. I do not know the effects on blood pressure, heart rate, type 2 diabetes, triglycerides or cholesterol. I may find the answers when I next see my GP.

Unexpected Results

Brain injury anger can best be described as a beast that rises suddenly, takes over, manifests with yelling or violence, and just as suddenly disappears. It’s difficult to manage by the brain-injured person as we don’t know when it will hit until it does. We learn compensating strategies to avoid it being triggered, including avoiding triggers altogether. But at best these strategies, I’m told, work only 50 percent of the time. So you’re pretty much at the mercy of this thing. Brain injury anger is a serious problem, yet no one seems to have figured out what causes it or how to cure it, only how to manage it, sort of. And even then there is no manual on how to manage this kind of anger; traditional methods do not work. The most common theory given for brain injury anger seems to be that damage to the frontal lobes removes the control over the limbic system and thus anger can have dominance over the person. Concurrent with this anger is irritability. It’s like everything is nails-on-chalkboard. I was told that the filters to outside stimulants are turned off, and so we become aware or reactive to everything. It’s unpleasant.

For me, brain biofeedback reduced and my constant irritability and then after several months, began to reduce the severity and frequency of the brain injury anger. Acupuncture also calms the irritability and anger, though doesn’t cure it. Using the 32-minute alpha-wave and 14Hz beta-wave sessions on the AVE can also calm rising irritability and anger, temporarily. However, my main triggers remained just as potent as ever. So I avoided them. Unfortunately, one of them is the TTC, and it’s not possible to avoid it altogether.

On 5 October 2010, I used the TTC subway and streetcar. It was uncomfortable but uneventful. I noted that down but didn’t really think too much of it. But the next day 6 October 2010, it started to sink in that my new therapy was positively affecting brain injury anger when I had to deal with technical support over the phone for a computer problem. I got angry — who doesn’t — but the brain injury anger did not rise. I did not feel edgy either. That is a first.  In over 10 years.

On 12 October 2010, I had to use the TTC subway and streetcar again. I was disturbed by the sensory data coming in but felt no angry reaction.

On 18 October 2010, for the first time in almost 11 years, I felt nothing, just like I used to before the brain injury, when I rode the TTC. No anger, no irritation, no annoyance, no discomfort. And I was only using one of my compensating strategies too. I usually use about three or more.

Another typical problem with brain injury is mood instability. Your mood can be fine one moment, and in the dumps the next, then fine the next, or manic the next. I’m not sure how common this is, but one guy described it as having leaky eyes. I have heard that anti-depressants are commonly given to those with brain injury to stabilize mood. My problem was I had a lack of affect interrupted occasionally by very intense moods. Brain biofeedback brought my emotions back to life, and over time the wild mood swings have settled down to regular, old instability. I don’t like the side effects of anti-depressants, and so I do not take them. Instead, I use the AVE and acupuncture to help my moods.

Concurrent with the anger reduction, mood instability has lessened in intensity markedly.

Last year I learnt that people with brain injuries can have exercise intolerance. After  I reduced my exercise by two-thirds, I had an increase in energy, reduction in water retention, was less hyperthermic (but since I still was, shows just how hot I was), and was much less short of breath. However, I have not been able to increase my exercise beyond 15-17 minutes four times per week, despite the fact I need to do so because of my diabetes diagnosis and for general physical health. And physical stress, like walking longer than about 5 minutes, will worsen my metabolic symptoms at night. Ever since my brain injury, I cannot walk uphill or up stairs without slowing down or taking breaks.

On 14 October 2010, I climbed a long, steep set of steps out of a ravine without having to stop (I stopped only to take photos). I was able to keep up with my mother enough so that I didn’t lose sight of her. I panted like crazy, but I felt no dizziness, no shortness of breath because of my heart or brain, no increased heat. And though I was dead tired and sleepy for the rest of the day, I suffered no worsening metabolic effects that night. It was so astonishing, I still cannot believe it.


What I call my “hypothalamus fix” has shown great promise. But it’s early days yet. I have had only about 6 weeks of combined CES-AVE therapy. And, as well, cold-weather stress has just begun and will not hit its peak for another 2 to 3 months, which will be the real test of this fix. I am increasing the intensity of the sessions and will increase the duration of the CES evening session (I’m taking it slowly) to, hopefully, compensate for the weather getting colder.

On the plus side, I have not yet had to resume morning atenolol doses, I remain cooler, my water retention continues to drop, my skin is less red and irritable, my sleep is better, my brain injury anger seems to be gone, my mood instability has diminished greatly, my exercise tolerance has begun to increase, and I need fewer acupuncture sessions.

On the remains-to-be-seen side, I do not know how my heart rate, blood pressure, and blood glucose levels have been affected. I do not know if this will help me drop weight, which I have not been able to do to any great extent with diet and exercise alone. However, I theorize that if the stress reaction drops, then insulin levels will drop, and so my weight should be more responsive to what I’m eating and doing physically. On the few times, I’ve remembered to take my pulse, it’s been variable and on the high side, though not as high as before I started taking the atenolol. I still get hot under cognitive, physical, or emotional stress, though I now have the ability to reduce it by using an extra CES sleep session. I have had reversals of the water retention improvement, though they were temporary and due to cold-weather stress. My wake-up times remain inconsistent, and I still suffer next-day fatigue from doing too much the previous day.

I also have more questions. From my experience, it is now clear to me that the hypothalamus is involved in brain injury anger. But is it the only part of the brain that is? What causes this kind of anger? What combination of therapies will cure it? And when should they be introduced in the recovery process? The hypothalamus also affects mood. But how much? Can treating only the hypothalamus stabilize mood, or are there other parts of the brain involved? Where does exercise intolerance come from? Is it because of an overactive sympathetic system and/or high cortisol release that drains the body to the point that there’s nothing left for exercise or physical activity? How does cognitive activity affect it? What else will improve exercise tolerance? And just how many people with brain injuries, especially closed head injury, suffer from these metabolic, anger, mood, and exercise tolerance issues? I have found only one study that talks about the prevalence of these things, as well as other related issues that I haven’t mentioned here. But that is insufficient to get a good picture of this issue. I plan on doing a formal survey with the Brain Injury Society of Toronto to get a sense at the local level. But if I had the means and resources, I’d do a proper research study, building on my own single-subject study. I’ll blog on that next time.

But first things first. I’ll continue my therapy, and if I remain at this level or better come January, if I no longer need the atenolol, and if the changes become permanent so at most I only need to do my “hypothalamus fix” occasionally, then I know I will have succeeded for sure.


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 1: The Hidden Secret of Brain Injury: Hypothalamus Dysfunction

Part 2: The Hypothalamus and Brain Injury

Part 4: A Hypothalamus Fix Followup

Part 5: A Hypothalamus Fix: Second Followup

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  • Grottbags

    Hi there, it would be great to know your progress so far? 🙂 I hope the therapy you were/are doing has helped you or you’re at least making progress?!!

    I think I am lucky as I also have the “constantly turned on fight or flight thing”, but its not as bad as yours by any means thankfully for me.

    I don’t have the extremes so much. Sleep can be a longtime in coming some nights as it feel like I get more anxious the nearer my bedtime arrives and sometimes I don’t even bother until I get to the stage of actually just passing out through exhaustion because I end up being far too alert. The only heat things I suffer from is I always have a hot head and face at all times and the patches of heat you describe arent as bad as yours either and when they swell they do eventually go down on there own, I’ve not needed cream or to put water on it to make it go down. My brain processes in general have suffered and at one point I had to come away from work due to what I can only describe as my brain flicking, I later discovered it was more that some of my thought processes had been lost. Also my short term memory is really bad. I have an over production of sebum on my face which Ive read is to do with cortisal which I never had before to the point where I have to wipe my face with a tissue and the tissue looks wet through, my moods are mostly flat but I also have a weird anger thing mostly its fine but it has happened when there has been no reactors like when I was washing my hair with my head hung over the bath tub and suddenly I was furiously angry it really scared me due to me not knowing why it happened . I knew then it was something chemical going wrong. I have a rawness on somedays with emotions, like my shield has been taken away, I wonder if this could be an over production of cortasil too or an underproduction?? I have developed rhinitus. I also have intermittantly back pain exactly where the kidneys are… which is where cortisal is produced… I have no idea if that could be linked it would be good to know what you think? At one point I was also getting bad headaches and someone mentioned that could be hormonal too. I think my hypothalamus is the cause of my symptoms too as I’ve heard it can be damaged in times of great stress if the stress is for a prolonged period by the cortisal itself. So I think my hypothalamus isnt regulating my cortisal properly like it should be.

    Hey also have you noticed a difference in what your physical reactions are like what I mean by that is how fast are you with an automatic reaction? I have found that even though I may be clumsy enough to knock a cup or packet of something out of the cupboard I have a weird ability to catch it too Im always quite shocked when I do it, it happens a lot! I thought it could have something to do with being in fight or flight all the time??

    I would love to here what you think and how you are progressing.

  • Your comment nudged me to see if I’d updated my list of related links on my post with my two followup posts. No, I hadn’t! I’ve added them now to the post but copy them here too:

    Part 4: A Hypothalamus Fix Followup

    Part 5: A Hypothalamus Fix: Second Followup

    I’m not completely sure if all these problems are because of an overproduction or cortisol and/or a sympathetic system always on, but I devised my solution for myself based on that assumption. Researchers really need to do some serious work in this area on people with concussions or closed head injuries before we can find firm answers.

    I did have traumatic rhinitis a long time ago, but it cleared up as my brain healed. I’m not sure about the reaction thing… Overall, I’m progressing well, which is so nice. I will try to post another followup in the spring or summer. Subscribe to my blog or keep checking back here (in case I forget to update the links list again!) to see it. Thanks for reading!! And I hope you find answers and your troubles clear up!

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  • mrchickenkiev

    I had an operation for a colloidal cyst in the 3rd ventricle and seem to have experienced some of the symptoms that you also incurred. The benign cyst is removed from an area adjacent to the hypothalamus. Apart from waking up during the night and being highly susceptible to stress, or often perceiving a high level of threat I have also been largely impotent, which started several months before my operation occurred- I was a 37 year old UK male, when this occurred in 2006. My doctor refused to link my impotence to the headaches I was having and sent me out the door thinking my impotence was age related- at 37!

    I experienced great stress thereafter, and returned to my doctor a year after my operation, and was offered antidepressants, and again no reference was made to my surgery. I didn’t mention my continuing impotence, because by that point the thought of being permanently disabled in that department and still unmarried would have depressed me to the point of suicide. So I decided to ignore my doctor, and found acupuncture solved some of the stress, and helped marginally with the impotence. I returned to work but found I was constantly fearing being laid off and was paranoid about someone hitting my cranial cap replaced after surgery. On a number of occasion because of arguments with colleagues I thought I was going to be killed at work the next day! After a sleepless night I imagined a “fantasy fight” would break out and that my skull cap would be shattered. My doctor suggested this was a fragile thing.

    In 2011, my paranoia about my work came to fruition and I was laid off. Whether this was a self fulfilling prophecy or just because I had drawn into my shell and made myself unpopular, I don’t know. This was drawn out over a long period which added to my anguish. I was also simultaneously visiting a close relative in hospital who was dying from blood cancer, and so my nervous streak reached desperate proportions. I really only got a couple of hours sleep for several years, though I was exhausted, and by 2011 whilst I had no trouble getting off to sleep I would awaken several times in the night. On occasions I would stay awake from 4am and worry through the night until I had to get up for work.

    In my paranoid state I managed to secure a level of unemployment insurance as far back as 2008, (my paranoia proved right!) so when I was eventually let go, I wasn’t made destitute. I still don’t sleep brilliantly, but things have much improved. It took me about 3 months after I became unemployed to start sleeping, and this was only with the help of 5-HTP. I don’t have the same range of symptoms as you exactly. I don’t overeat, or retain fluids. I have a little too much abdominal fat, but again then I rarely exercise. I did weight train for years before my surgery, but my doctor banned me from this for the sake of my skull cap, and I didn’t have much energy with all the stress.

    I only discovered about the connection with the hypothalamus and the third ventricle this year, in 2012, and for the first time realised that this was certainly behind my impotence from the outset- like I suggested to my doctor. To be honest I have been more worried about that than anything else. However I have found in recent months even that has come back to a degree. I realised I was getting night time erections which I have found occur independently of waking erections, and probably indicate that my hormonal levels are sufficient. So I have been looking at how stress can effect neurotransmitters of late. I think the combination of phospholipid supplements I take for brain support, a break from work and acupuncture are all helping me, across the board to get better.

    I was looking to get full recovery, based solely on the support mechanisms I have already outlined. I even created a website in my spare time looking at the various types or erectile dysfunction. Yesterday I was thinking about writing an optimistic piece for the site title how I beat erectile dysfunction, when I looked up my reference relating to impotence and the colloidal cyst, when I decided to do a bit more research on the hypothalamus, and realised that it explained not only my over reaction to stress, poor sleep, my impotence and possibly my under reaction to sexual stimuli. I found one other person who seems to have had a similar reaction to brain surgery to the third ventricle- though I have yet to correspond with them.

    I took the phospholipids mainly for acetylcholine production because that is the transmitter used to communicate stimulation down the spine to the penis for erections. And the fact that acetylcholine is the memory molecule- and choline is used to build neurons. I have had poor short term memory, which got worse up to December 2011. But I read also of evidence that stress depletes it and other neurotransmitters, which you need to maintain mental balance. In fact I read that the depletion of neurotransmitters themselves would lead to anxiety. Stress will also interfere with hormone production and favour cortisol over testosterone for example. I suspect that the phospholipids might also be repairing the parts of the brain that might include the hypothalamus, because I am just not as rabidly stressed as I was.

    But like I say, the hypothalamus has to have played a huge part in my reaction to everything that has happened to me in the intervening 7 years. My surgeon did suggest that short term memory could be a problem, but I didn’t help my case by remembering to call him by his correct title and name straight after surgery, proving that I had a great memory.

    For those who are squeamish about talking about the sexual part of this problem I apologize, but it is instructive I think, because progress here is more easily measured, in other words the degree of erection can be calibrated. Up until the last couple of months, my best erection was a long drawn out affair where it occasionally teetered like the leaning tower of Pisa, before collapsing. More recently I have felt the blood flowing rapidly and my mind has not been distracted- in other words I have been able to focus on it. I have also occasionally felt more turned on by sexual stimuli. I also felt some of the things associated with being turned on like rapid heart beat and deep breathing, but these in the recent past, seemed to deflate my erections. I read somewhere that serotonin can mediate this process, whereby the flight mechanism overtakes your desire and deflates the penis- so I am hoping 5-HTP will help here again.

    I also decided with my acupuncturist that I would get the needles down my back from 2012 onwards because this reflected the acetylcholine spinal link, and I think that has helped my erections too. I have always felt that the problem with erections and the stress where linked and any solution had to address both. I had a problem with my lower back, which I put down to slouching at a desk- but TCM teaches that lower back pain is associated with impotence so perhaps it was due to a lack of stimulation from acetylcholine in the lower part of my parasympathetic nervous system. Mind you this all seems to be addressing the problem downstream, and acupuncture is just calming the system down after the horse has bolted. I had hoped that the source of the upstream problem was just the depletion of neurotransmitters, and had realised that acupuncture after 5 years was not going to be a cure all. Again I am hoping that the phospholipids, choline, acetylcarnitine, phosphatidlyserine and fish oil are repairing the brain anyway, so I might have hit on the right cure, from a faulty idea of the pathology.

    I still can’t be sure how much of my problem was related to the hypothalamus or “just” the stress that occurred after. I originally thought this was down to PTSD, but since I never dreamt about anything relating to the cyst or the operation, it didn’t add up. But I am pretty sure that the actions of the cyst on the hypothalamus was the original problem that led to my impotence, and so it is highly possible that some “bruising” or shock to the hypothalamus must link the stress, memory problems and impotence subsequently. I now feel that these things can heal themselves to a degree over time, and I am sure drugs could help if the doctors really knew what they were treating. However they are apt to throw anything your way to get you out of their surgery, and it is left for the patients to pick up the pieces. I had three months off for my surgery, and I think a year off would perhaps have allowed the brain to heal itself, along with nutritional supplementation and acupuncture from the outset. Doctors aren’t interested in supplements, because it is just drugs or food for them and nothing exists in between.

    I’d be interested in your thoughts…if you are still looking at your blog?

  • mrchickenkievs

    I should have added that I’ve been taken an assortment of vitamins, which may be helping with my process of recovery. I read too that supplements like arginine and citrulline, as a well as vitamins C and B1 are associated with healing wounds and cellular recovery.

  • Hi,

    I’m definitely still looking at my blog and posting every week. 🙂

    I’m very sorry to hear of your troubles. I had thought the UK was much better at looking after people with brain injuries of all sorts than Canada was. But I guess, we all share the same problem of the doctors not knowing enough, not wanting to admit it, and not wanting to look into it. I don’t know if you read my full hypothalamus series, but if you haven’t, I recommend clicking on the links in order at the bottom of the post as they cover the full extent of what I know about the hypothalamus and how my fix worked. I obviously haven’t covered your main issue, but the hypothalamus is involved in the entire endocrine system as well as the sympathetic system, both of which seem to be involved in your case. Also, I have written a bit on food or nutrition as part of other posts:
    http://jeejeebhoy.ca/2010/09/01/reading-the-eyes-and-brains-of-it-ii/(scroll down to the section title beginning with “Food”)
    http://jeejeebhoy.ca/2011/07/25/how-do-you-know-if-youre-malnourished-when-fat/(the bottom three sections are on three important nutrients)

    Omega 3s in fish oil are recommended by those who look at the nutritional aspect of brain treatment, as well as exercise if you don’t have exercise tolerance issues.

    I’m not familiar with some of the supplements you’re taking. I take antioxidants with grape seed in them, Vitamin D, and COLD-FX. I used to take Vitamins C and E and other stuff I don’t remember but got fed up with taking so many things and pruned my list down to what I thought helped the most.

    It’s true most doctors don’t seem to look beyond drugs. The brain produces not just neurotransmitters (chemicals) but also brainwaves. I have approached treating my brain through the brainwave angle instead of the chemical angle. Psychologists who do this kind of treatment call it brain biofeedback or neurofeedback. The patient has to work at it, but the effects, if it works, are permanent as far as I can tell. It can also address a variety of problems unlike a pill, which targets only one thing.
    This post contains some information on that method: http://jeejeebhoy.ca/2009/09/22/the-awesome-add-centre-hope-for-brain-injury/
    Being able to remember your surgeon’s name is not evidence of a good, unimpaired memory. Proper, sophisticated tests are required to determine memory impairments and the extent of them. Even then, I think it’s a bit of a crapshoot as how memory works is not fully understood. Acupuncture is great and 5 years isn’t that long for serious issues, but I’m wondering why you haven’t also seen an impotence specialist? He may or may not know how your cyst would’ve affected you but certainly wouldn’t be dumb enough to ascribe it to age (I hope!).

    I have a book coming out November 30 called “Concussion is Brain Injury.” You may find it useful. I wrote it so that people would know they’re not alone and to share what I’ve learnt. My intention is to make it updateable, as I’m learning new stuff all the time. I’ll be posting about it when I get closer to the date.

  • mrchickenkievs

    Thanks I will read the links. All my visits to my GP have ended in farce. I can see how the cyst caused the impotence, but I’m a bit perplexed about the mechanisms that have allowed the problems with stress, memory loss and impotence to continue. I would hazard that brain matter takes time to heal and that stress in the form of cortisol circulating, exacerbates the problem. I don’t think I was permanently disfigured in some way, and in theory all of this took place within a ventricle rather than functioning brain tissue.

    I’ve read about things like Cognitive Behaviour Therapy and I did go to see a counsellor who also hypnotized me. I’m afraid you get a different answer from every “professional” you go to see. The acupuncturist doesn’t really get the brain trauma angle, the counsellor thought it was all psychological and my GP just wants to avoid dispensing Viagra.

    In 2006 when my headaches compelled me to seek medical help, I asked my GP to make a connection with the headaches and the impotence, but he wouldn’t discuss the problem and only shook his head. He literally clammed up on me. I suspect he didn’t want to give out any Viagra. In Britain we get our service for free but it is rationed. He wouldn’t explain why he thought as much, and then asked me to come up with an alternative cause which I suggested was age. He agreed, because I suspect age absolved him of all responsibility, despite the tenuousness of his diagnosis. He really wanted to convince me that the problem was permanent, which I found crushing.

    I tried all the aphrodisiacs in the next year after surgery but I gave up on being forthright about the issue because I didn’t want to be given the crushing disappointment again. I only had one follow up with the neurological department, one year after surgery and when I mentioned I was feeling tired, I was met with a bemused expression and silence. He was only interested in encephalitis or something of that ilk and reminded me that I was one of the lucky ones who survived surgery.

    Since then, of course I have rarely shared the full nature of my problems with anyone, particularly friends and family. It is too far out, for most people to think that doctors don’t have all the answers, let alone that they might mislead patients. It is also too easy for people to just say that you have to do what the doctors say and take a load of drugs, and become life long dependent on them, rather than seeking a cure. Most of the drug companies are interested only in getting repeat prescriptions.

    Actually I should say, I have really begun to feel a lot better, and I nearly had a full erection the other day, like I did 7 years ago. But this issue has really scarred my life, and I literally have not socialized in years. I managed to go to my work albeit on about 3 hours sleep a night and moved back in with my parents, all the while paying for my own house. I have therefore missed out on relationships, fathering children, and ultimately recently lost my job. I don’t tell you this looking for sympathy, and I have really bent the ear of strangers on line the last number of years looking for an answer- but I now think it is time I put together a legal case against my GP. It is one thing to not know what causes something but trying to make me think it was age related, was I think most people would agree reckless.

    I signed an indemnity for the operation but I suspect I can get them for the total absence of after care. I’m pretty sure the hypothalamus issue is the crux of the problem, but now I need to know exactly why. I will read your links and see whether they can enlighten me further. Unfortunately because most of this conversation took place in the privacy of a GP surgery, it is my word against his to an extent.

    However I congratulate you for allowing me to put two and two together.

  • mrchickenkievs

    Really I feel like I am playing a game of chess with my GP or that the cards are stacked against me, but I just think my story needs to be told in a court of law.

  • mrchickenkievs

    I like your piece on exercise intolerance too. I used to go to the gym 3 times a week and after surgery tried to exercise to get rid of my belly. I stopped however because I found it difficult to impact on the fat accumulated and it seemed to stress me out too. I stopped doing the weights because of the skull flap issue, but I think generally that with intense exercise raising cortisol it just feels like more mental stress to the brain. I also had a very bad episode on holiday with friends were I had no energy out hill walking and had to stop every five minutes. I started exercising a bit recently but found it tedious on my own indoor cross trainer. Now I am more likely just to park the car at a carpark which will require me to do some walking before I reach my intended destination. I find that leaving out high GL carbs is good too for stopping mood swings, and eating regularly stops the blood sugar from going too low; that also prevents cortisol for getting released for no good reason.

  • Hypnotherapist

    I have a friend that is a 52 year old female and she has a major problem, so I wanted to see if anyone has experienced the same and/or has a solution. My friend burns up with heat on the inside of her body (from head to toe). She says its like having a constant huge fire burning from within and continues 24/7. In addition, she has not been able to sweat at all for over a year. She started HRT a month ago and her levels are now where they should be, but because of the constant burning she cannot enjoy even a single day of her life. She tells me that she cannot live this way and doesn’t understand why God won’t help her or take her life from her. No, her problem is not caused by Menopause. If anyone has had the same problem or might have a suggestion, please write me at my email address of jotarallc@sbcglobal.net. Thanks so much.
    By the way, I enjoyed reading all of your articles.

  • Hi! Your friend has a thermoregulation problem, which I have, and apparently many with brain injuries have. I have given up on the medical system; my next project will be to look into this, but I won’t be able to get to it till next year, and I have to reacquaint myself with that aspect of neurophysiology first. If you keep an eye on my blog or subscribe to it, you’ll know when I write about what I find.
    I may have written on this in other blog posts (do a search for sweating). Acupuncture helps. As does drinking ice water and cutting out all spices including pepper.

  • I’m glad I was able to help you put two and two together. Your question about my symptoms versus yours is that I had a diffuse brain injury and the hypothalamus was only one part of it. However it’s known that two people with the same injury can show different effects or variations. We know so little about the brain that we’re still on the forefront of discovery. Someone also mentioned to me that there is hormonal replacement creams or gels for testosterone. For if hypothalamus injured in your case then that would affect endocrine production and perhaps include reduced testosterone (and androgen too maybe??) production. Your GP or specialist can prescribe the cream or gel. I hear it’s becoming popular here. And one last thought: antidepressants reduce sex drive. A dumb idea to prescribe when a person is not depressed and already having probs.

  • mrchickenkievs

    Thanks. My problem seems to be more complex than just a testosterone deficiency. I get erections at night which are perfectly adequate which should indicate that my testosterone levels are sufficient- both daytime and night time erections rely on there being sufficient testosterone being available but the latter doesn’t require a stimulus from the brain- that’s were I seem to be compromised. The default position for doctors seems to be to conclude that if you have night time erections but no daytime ones, then you have a psychological problem- which is just another get out clause for them. Psychological explanations like ones relating to age effectively absolve them of all responsibility. That’s another reason I never went back to my GP, as I expected his usual deflecting tactics would probably take that tack.

    I’m only just beginning my study of the hypothalamus, but I have gathered already that it is the terminus for a lot of neurological activity which includes not only neurotransmitters, hormones (all kinds of androgens) and peptides which either have inhibitory or excitatory effects on the neurotransmitters and hormones. So somewhere within that soup of lies the answer to my problems. Maybe its just a problem of making sure that soup is balanced out, containing the right amounts of each transmitter and hormonal type?

    There are also specific neurons and probably receptors relating to different activities which might have taken a battering, which might be in need of repair. I think of it as wiring which has lost its connections or needs to repair itself after a power surge. My improvements tell me it can be repaired. Since I’m affected in other ways relating to stress, sleep and memory, that is the other reason I’m not just focused on testosterone. I’m looking for a more general culprit, whether that be damaged structures, or now that I have just mentioned them- the peptides.

    I know that acupuncture effects neuropeptides and I have often felt I am more easily aroused after acupuncture though not often in the first day, since I suspect acupuncture has a down regulating effect having turned me slightly soporific at least in the next two proceeding days. However my general level of arousal has improved substantially in the last 3 months. I stopped worrying about impotence some time ago because I seem to be getting very… very… slowly better. So even if it was a testosterone problem- the acupuncture, rest and my supplement campaign seems to be restoring balance.

    In the first year after surgery I could barely even get an erection even after manual stimulation but then I had what I would consider to be clear and present issues with stress- my brain was still in a high state of alert. I suspect you have to get over the obstacle of being constantly frozen by fear, when the brain is swimming in cortisol and your glands are in a state of emergency perpetually pumping that hormone out, before you get to a point where you can repair your “shocked” brain. I’ve read where such stress changes the plasticity of the brain and neurologically/psychologically demands you to be in a state of fight or flight readiness. You then make up phobias to explain the underlying level of excitement in the physical brain. Acupuncture certainly got me out of that initial phase, and if it hadn’t have been for the long drawn out death of a relative from cancer and the slow collapse of my employer, I’m sure I would have needed less recovery time.

    But that returns me to the hypothalamus because before stress was an issue I was impotent, and that was at the time of the cyst. I would even say to myself (post surgery) this stress is stupid, it is totally out of proportion to what a rational person would think. It wasn’t paranoia per se, because I didn’t believe in Ghosts and Martians or people were trying to poison me, it just seemed that my reactions were over the top. At the time I put it down to PTSD and the plasticity argument, but I wasn’t entirely comfortable with those ideas as an explanation. I suspect my acupuncture course in of itself would have quickly cured the plasticity problem and PTSD wasn’t really an issue because I actually didn’t struggle with the surgery or have one specific shocking incident.

    Something more fundamental was at fault, and I did try in vain to get the acupuncturist to acknowledge that, but eventually just decided to let them get on with whatever it was they were doing and see whether it worked. The Chinese acupuncturist’s English is very poor, and I think they suffer from the fact that they aren’t in a position to tell you to take an extended break from work, with a sick note. My acupuncturist is still telling me to get a job, but I’m pretty sure my year off has been as important as any medical intervention. I think they don’t realise that everyday stress takes a toll on someone with a hypothalamus injury too.

    Having said that and I don’t know whether this is pertinent but for years after surgery I had a sharp pain in the right side of my brain (until the last couple of weeks), when I awoke having slept on my right side. That pain has gone, though I will still automatically have a nightmare if I sleep on that side. The pain was a bit like what you would experience if you had a bad hangover, though sharper. I always knew this was what I would term a “wound” pain. I also had a dull pain in the skull on cold days where the skull cap was rejoined.

    At the outset when I had pointed out to my doctor that I was constantly aware of the fact that the skull cap was like an attachment to my skull rather than a uniform part, he just told me it was something I would get used to. So I just felt the wound pain was part of that issue. Now I suspect that pain was telling me those physical structures in the brain had not healed. I also read that the brain doesn’t heal, which is one of the reasons it is enclosed by the skull, so I wasn’t expecting an improvement. But I also was lead to believe that because my cyst was not in a piece of functional brain tissue, no part of my working brain was actually harmed, so the pain was just perhaps from the outer lining of the brain where an incision had been made.

    I’m cautious about things like testosterone therapy per se, because it doesn’t actually tackle the problems that have caused low testosterone in the first place. It’s another symptom treating only intervention, like the antidepressants in my opinion. If you take an endogenous source of testosterone it actually stymies your own ability to produce your own supplies, as your own body simply “realises” it doesn’t need its own production. That’s why there are so many problems with young men on anabolic steroids, even though Big Pharma claims their TRT does not ruin your own production in the same way. Again it’s a treatment that suits the pharmaceutical giants because patients become dependant, and require regular and ongoing top ups to perform.

    Do you have any recurring problems with pain in your head, that you know is not an ordinary headache, but related to your injury?

  • mrchickenkievs

    Should have said that one of the things that really convinced me that the acupuncturist knew what they were doing and potentially knew about the hypothalamus connection, was that they had tied my sleep to erection problems and to stress. The first thing they always ask me is how have I slept, because this must be a good barometer – perhaps the most discernible or fragile part of the process that shows the treatment is working. That gave me confidence that they were treating the whole things as the holistic problem I knew that it was.

  • mrchickenkievs

    Since I last posted to your blog, I came across a group (500 members!) on Facebook http://www.facebook.com/groups/5241491877/files/ specifically dedicated to people who have either suffered from Colloid cysts or had operations to remove them. It appears that the proximity of the cyst to the hypothalamus has had negative consequences for a significant number of cysters, thus corroborating much of what you are saying on your blog.

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