The Hidden Secret of Brain Injury: Hypothalamus Dysfunction

Shireen Jeejeebhoy, Brain Injury Blog
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.

From Shireen Jeejeebhoy's Brain Injury Blog. Used with permission.

Posted on BrainLine April 1, 2011.

Comments (26)

Please remember, we are not able to give medical or legal advice. If you have medical concerns, please consult your doctor. All posted comments are the views and opinions of the poster only.

I was born with a cystic mass between my 3rd and 4th ventricles. Luckily no one noticed. It caused hydrocephalus from birth. It also causes my hypothalamus to go a bit wacky, as I like to call it. I had a shut put in at approximately 20. That helped and I have had 2 ETV surgeries and over 20 shunt replacements in the last 38 years. The thing is, the hypothalamus is still acting up. It can be 90 degrees and I will be freezing. I can gain weight in a heartbeat. It will go down but takes forever. If the cyst shifts all kinds of things go on. But like most people the thing that bothers me the most is the lack of information. Doctors just don't know what is going on most of the time. I have have 3 doctors who understood me in all these years. That doesn't mean they knew exactly what to do for my condition, it just means they knew that I understand my body. Wishing you all the best of luck!

Thank you so much! I have figured out a little bit more ahead of where this ended, but thank God because you just wrote my story to almost an exact and it is enlightening ( i am in a glitch from studying all night lol so I may not make much sense) as you know doing a personal study you know whats real and you know what you know but there is always that doubt because noone else seems to don't want to be the person that with 100 percent certainly argued for 30 minutes about not having the remote then getting up for the restroom and there it is like nesting on an egg....even with all my certainly of figuring out what exactly is causes such an array of symptoms but how and why they are there and how to fix them you only get personal reassuring as you come across one aspect that confirmed what you had been trying to say but then again you know you're brain damaged so am I convincing myself ? And this works for that but i am still doing this adds doubt also...but finally someone not in medical terms told my story almost word for word and noone wants to hear me read or learn so they can understand what I am saying or even simply understand a little of me. Ok my glitch is making this incomprehensible.

Praying that you have found answers. I came across your posting as I was searching hypothalmus dysfunction. I overheat and struggle for hours to cool down. Doctors always blame menopause. Really?? This has been going on for decades! Guess we have to heal ourselves!

Am having the same symptoms would really like to know if you had any luck fixing it

Really want to hear how you fixed it. I need help thanks I do hope all is well for you

I had a TBI in 2010. I'm now dealing with facial swelling, hives and sudden unexplained weight gain and it's not from food. I've been around 105 110 all my 51 years of life. I was 105 three weeks ago now pushing 120. I'm dizzy and I feel like I'm going to die but I'm not sick. All doctors say allergies blah blah blah. I know steroids aren't my friend. I need help.

You may have developed POTS or MCAS. Autonomic dysfunction is common after tbi

Me. Screen, do you suffer extreme fatigue when the barometric pressure changes. I live in Gallup New Mexico. When the barometric pressure rises I feel like I am being pressed under tons of rocks. When the pressure levels it takes awhile to adjust. Yet when it fluctuates I'm in a mess like stuck on a roller coaster. I experience fatigue, shortness of breath, nausea, back pain leg pain in balance,. Physiatrist has been helpful, endocrinologist the first one was doing me good. Then he left and I ended up with another that screwed me big. Prescribed me all different ways but healthy. I had to change diets like you even stop the salt intake, minimalist my exercising. Which I felt like 5 minutes and I would be exhausted. Another displeasure for me is me poking and sounding as tho7gh I am inebriated. My speech spurts, my limbs feel as though I am a puppet and my strings are cut. I had a closed head injury in 2016 when I was struck at the back of my head. Life has been an interesting ride. Just looking for answers

just an fyi...might help someone....hypothalamus controls water regulation via antidiuretic hormone (ADH). TBI is most common cause of ADH hypersecretion (syndrome of inappropriate antidiuretic hormone secretion SIADH) causing water retention or of ADH hyposecretion (diabetes insipidus) which causes frequent urination, and thirst similar to diabetes mellitus but without the high blood sugar. Thank you for the blog. I do not have TBI but my fiancee does with many symptoms you discussed.

I too suffer as my hormones are all low. I have the symptoms of ME/CFS. Perhaps hypothalamic dysregulation is part of ME/CFS. Who else has ME/CFS symptoms?

I had a massive heat stroke in 2008 in the military. My core temp was over 105 and I was not expected to survive. I did but now I have blood pressure problems which require me to take BP meds. I can't be in the heat for long (and I live in Texas!) I go to the VA for my issue but have not been diagnosed with anything but I think I have hypothalamic disorder. My emotions are way off (and I get really frustrated really fast and it is very noticeable if I am in the heat for an extended period of time or doing something strenuous for a short amount of time getting my temp up.) I try to drink but I'm not thirsty and my sleep schedule is off, all signs of the disease. My wife also thinks I may have PTSD from it. Brain damage is no joke and I HATE feeling like this.

Thank you for posting. I have been going through these issues as well. Sometimes I feel as if I'm all alone. I look up each new symptom. It's hard on my own. It's hard to remember what I looked up the night before. I live in Phoenix, AZ. It is getting hot now and my brain is having a very difficult time in this heat after my TBI. The dizziness is increasing in frequency and severity.

The information shared in this blog is very helpful. In 2004 after repeated ER visits it was discovered that I have a pituitary adenoma. You have a lot of ups and downs taking Cortisol in the correct amounts if that’s even possible. But the last 14 months I have been so nauseous and in such horrible abdominal pain that the doctors think that the hypothalamus is not sending messages to the pituitary correctly. I live in Austin Texas and I do have some very good specials here. They have helped me gain entrance to the Mayo Clinic in Rochester Minnesota by the middle of February 2019. I have worked diligently putting together a good history and all of my medical records will be sent to them ahead of schedule. If I learn something intelligent I will put it in this blog. There are parts of this blog that I intend to copy and put in my records. I had surgery to remove as much of the tumor as they could in 2006. Apparently it is growing back and that may be the problem. I will call my specialist in Austin. At this point however, I’m certain that it is the hypothalamus mis-firing that’s causing the problems. And Apparently there is no cure in the world for that malady. That is the conclusion of my Austin doctors. So is this how you die because no one could figure out the entire hormone system? Maybe I will end up being famous for no good reason whatsoever.

I read your comment and I was curious as to what type of tumor you have? Also, how long after the first tumor resection did it start to grow? My daughter had a brain tumor that originate in the hypothalamus. March 2020 she had to undergo emergency surgery as the tumor grew a giant cyst of spinal fluid causing it to bleed within. As of now, all physicians have said is that its possible for the tumor to grow again due to hormones. Once she is past puberty the chances of it growing back is lower. With that being said, if you can control the hormones, wouldn't you be able to control the growth of the tumor? With that in mind, I have searched for seconds opinions outside the U.S. No one here seems to be interested in understanding the hormone system and finding a way to prevent this mass from growing, only in giving patients chemotherapy or undergoing surgeries. I did find a doctor who recommended a medication to stabilize hormones. As of now, my daughter had four MRI and they have come back stable. What can potentially be left of the tumor has not changed. I'm hoping it stays the same and doesn't changed. As of now, the neuro-oncology treating her mentioned he hasn't seen a case where the rumor doesn't grow again. I'm wondering if it's just too soon and there may be change coming . Also, he mentioned there is medication available to help stabilized hypothalamus. My daughter's hypothalamus was damaged during surgery and ever since March she has gained 80 lbs and is presenting may of the symptoms most on her are mentioning. Like many of you, I couldn't put in words the frustration every time I try to explain to the doctors all the changes I see in her and they look at me as if I was crazy or possibly over reacting. I will give you guys an update if there are any changes once we try medication for hypothalamus and see any improvement. Im very well aware that once the hypothalamus is damage there's no way of repairing it, but there has to be a way to manage it.

Do you have any update on how your Mayo trip went. I live in Minnesota. Had TBI and suspect hypothalamus.

I have damaged my hypothalamus after taking amphetamines and I am racing continuously internally do you know if anyone can help me with beta blockers or can reset a hypothalamus

My God. This is me. I stumbled upon your article when looking up hypothalmic disorders. I am in the U.S. and my Pain Specialust diagnised me with RSD(Reflexive Sympathetic Dystrophy) back in 2015. Sounded made up. Never looked into it...until 1 week ago. They don't actually treat this here. Just manage the symptoms ie: drugs until your a walking zombie. In 2005 had a major car accident. At the time was a Respiratory Therapist working 16 hour shifts and going to Nursing school full time. Never a lazy girl. My life is now an utter mess. Thanks for this. Thought i was alone. Keep me informed Please. Keep the light on.

I'm tempted to write a lengthy comment on the similarities and differences between your article, its comments, and my personal experience. However, as a TBI, probable CTE person I prefer to tell you my reaction: like someone wandering through the desert for decades who has just arrived at a huge oasis. I look forward to reading more of your blogs and thank you - more than you can possibly imagine - for showing me this path forward exists.

Wow, great blog. I had a stroke 11 yrs ago. Anything hormone related went bonkers, then the seizures.

I have almost the same symptoms as you. I came across an article about the hypothalamus and stroke. Mine is definitely broken but I thought it can't be healed. I feel same about docs. Screw them. If you have better info than me please share.

I’m also a TBI survivor. I have some of the symptoms you do as well. I have to be very careful with stress also. Others can not always understand but my life is arranged to be the least stressful it can be. I’m worried I may be mentally disabled soon as I’ve recently had a worsening of symptoms. To look at me you would never believe it and that makes it all the more difficult. Serious trauma I suffered I suppose I should be grateful for the progress I’ve made. The effects are always there though. Good luck on your journey. I hope the best for you.

Thank you so much for sharing your story. I am also a traumatic brain injury survivor. Reading your blog was like reading my personal experience. I have a damaged hypothalamus, and it causes me to leave people's homes because their heat is too hot for me to tolerate. Sometimes, I get emotional because little repetitive sounds sometimes sound like fingernails on a chalkboard to me. I have seen doctors at a major university's research hospital and they do not seem to understand the magnitude of the problems faced by a person with a TBI. Thanks again for sharing your story.

I wish my doctors would read this story but I am sure they will not! I have been trying for 41 years to tell doctors I have a hypothalamic disease caused from radioactive iodine taken when I was about 30 years old. (They confessed thy gave me to much.) They laugh at me and don't even try to check it out! I stay hot 90% of the time and then will have hot flashes with my temperture going up anywhere form 99.5 to 103.4. This happens many time every day I took it on my own and went to a compounding pharmacy for some test. The day I went I was staggering so bad I'm sure people thought I was drunk but it was from lack of sleep. They discovered I had no cortisol and no progestrone. I took that report to an endocrinologist and he said there was nothing wrong with me! I ask if it could be my hypothalamus and he said no! This is controling my body and my life!

I found your blog post after searching for hypothalmic dysfunction. I do mot have brain injury but may have gotten this secondary to a herpes virus. I am in a race against time tho since i am in hypertensive crisis and especially bad overnight and very early morning. Head is pounding and think stroke is likely and docs wont help. They only care about ruling out a pheochromocytoma. I hope i can find your followup blogs on who to see or how to treat tho think ilits too late. I have many symptoms of hypothalmus dysfunction including body hair loss but cant get anywhere. Wish me luck and hope u are doing well in the 6 years since u wrote this. I dont suppose there is an online discussion group for this? Ie hypothalamic dysfunction

Also Sami if you search Autonomic Dysfunction, Dysautonomia and Autonomic Neuropathy you may find more information. There are facebook groups and other support groups with people suffering the same as us.

I was diagnosed with Autonomic Neuropathy due to Chicken Pox Virus. The doctors didn't have a clue what to do. A Kinesiologist( Total Body Modification Practitioner) advised I take large amounts of B12. The amounts would be different for everyone but I had to take 1000mc of B12 three times a day and Vit C twice a day. Rest and have heat packs on my torso focusing on my Liver. It has dramatically reduced my symptoms. I hope you are ok.

I too am a traumatic brain injury survivor and your blog has moved me to tears (don't worry about it I cry all the time, my brain defense mechanism to an overwhelming moment). I have read countless articles about symptoms and treatments, and this is the first time I've taken notes. Thank you for sharing your experiences.