The initial bleed at the base of my brain, the hospital had seen but down played it. The blood pushed against and irritated my brain stem and spinal cord. These control the flow of messages between the brain and the rest of the body. This added to my physical symptoms.
Together the brain and spinal cord form the body’s central nervous system. The brain makes the commands for the body to function, and the spinal cord delivers those messages to the body and from the body to the brain.
Branching off the spinal cord is the peripheral nervous system. These nerves are the finer detail, like what capillaries are to arteries.
These systems work together to enable the brain to control the body’s many complex functions. These fall into 3 major categories:
- Motor Functions – commands your body’s voluntary muscle movements e.g. walking.
- Sensory Functions – allows sensation of touch, pressure, temperature and pain to be communicated and analysed.
- Autonomic Functions – regulates digestion, urination, body temperature, heart rate, and dilation/contraction of blood vessels (blood pressure).
So although the bleed had stopped naturally, it still gave me a whole host of difficulties.
As I struggled to walk and had poor coordination, that fit into symptoms of Motor dysfunctions.
Then there was the fact that I constantly felt freezing (or as I kept complaining “Baltic!”)
No matter how warm it was or what I was wearing I felt cold. My friend and work colleague Kate, gave me a fleece lined onesie which I wore to bed as well as socks and slippers, and still I was frozen. In addition I had altered sensation down my left side. This means I still have constant tingling and my left struggles to identify sensations. So mostly it just registers pain, which I guess is a “just in case” to make me jump back as it might be harmful. Cold water feels like I’m being stabbed with a million knives. All these symptoms fall into sensory dysfunction.
The most frightening, and at the same time embarrassing, is autonomic dysfunction. Whilst I was in hospital my blood pressure was all over the place. Previously I had always had lower than average blood pressure, but the hospital staff had to constantly monitor me as it would be sky high and then abnormally low. This is dangerous, but luckily with their support it did level out over the coming days.
But my digestive system was struggling. I’m sure most people at some stage have endured the misery of constipation.
But after 6 days of being bed bound I still hadn’t been and was showing no sign of it being likely. After they had tried laxatives, which failed, they resorted to an enema. For want of a better word, this is where fluids are pumped into the lower bowel via a tube up the bum. I can’t remember how long I had it attached to me, but it felt like forever. I actually don’t remember much about it but it must have worked eventually. However for months I continued to have problems with my digestive system.
Something in my nervous system was still trying to get the right messages to the right places. Essentially my bowel needed to relearn what to do.
Alongside that though I now had an overactive bladder. I had “key in the door syndrome”. Suddenly as each time I got home, I found I had to run to the toilet (made me wish we had a downstairs loo in our house). It wasn’t necessarily a lot, but there was no stopping it. Or I would find minutes after being to the toilet, I would need to go again. This was caused by my bladder to not emptying properly. Again these basic functions of life were off kilter. It resulted in me feeling like I always needed to be near the loo. With the help from the gynaecology and physiotherapy departments I was able to retrain my body. However this took months.
Unfortunately none of this was explained before I was sent home after my accident. We probably didn’t ask the right questions and as I wasn’t self aware I wasn’t reporting the physical symptoms of my brain injury. But it would have helped if they had talked us through what we might expect. The doctors and nurses did a fantastic job at stabilising me and they work tirelessly for patients every day.
The NHS is amazing. But the constant pressure it’s under to save lives meant in my case once I was no longer “critical” they felt they needed to focus on others who were.
But not all symptoms are necessarily connected to your brain injury as I found out in Overlook other problems & wrongly blame brain injury.
19 replies on “Surprising physical symptoms of my brain injury”
I know this post is a bit embarrassing and I’m not expecting other people to reveal their embarrassing moments, but if this has helped let me know. I also hope it’s at least a little bit funny 😉
I think it’s embracing and being truly honest about symptoms that other people may be suffering with, beautiful honest talking x
Thank you Holly, as someone who has always been reserved I had to bite the bullet to talk about this. But I’m sure it’s many have worse but me opening up a bit might hit a cord with them.
Michelle, you should spend more time with some ‘mum’ friends…this is all we talk about for about 6 months after we have a baby. It is embarrassing, but the thing with embarrassing things (I find) is the more you talk about it, the less embarrassing it becomes, so good for you. I imagine this experience has tested your bravery in so many ways! I spent 6 months with on-and-off piles, I drove to the shops once and had to drive straight back as knew I wouldn’t make it to the loo and don’t even get me started on running, sneezing or (ha ha ha) the trampoline.
As for NHS, it’s a difficult one. I don’t know if you know, but my little boy had a stroke (clot) when he was born, so his brain is also damaged, but obviously in a very different way (best time to get brain damaged is as a baby weirdly). I have found there are no prizes for putting on a brave face – if I don’t understand something, I ask over and over until I do, if I don’t understand an accent I politely tell them and ask them to try to speak more clearly, I’ve cried in front of every single medical person I’ve ever met – no exaggeration. My advice following my experience is that it’s fine to empathise with the NHS and its staff, but once you’re in front of someone, that’s your time and you shouldn’t leave without saying everything you want to. And mention the little things too, sometimes it’s reassuring to hear it’s nothing or a simple explanation.
Good luck with your ongoing treatment Michelle – this blog and you in general (before and after the accident!) are truly awesome xx
Thanks Anna and it must be so difficult not knowing what the future holds for your little boy. But you’re absolutely right, if you don’t mention it they cant help.I really appreciate your support. xx
They didn’t tell us much when I left the hospital. After my skull fracture they said I’d have some memory issues and headaches…. No warning about all the other stuff. I actually never got any headaches. Memory issues were a given but I overcame those more quickly than they expected. I completely lost my sense of taste and smell and my ability to feel ambient temperature. I was very quick tempered and impatient. I experienced anxiety issues for the first time ever (I now understand what people with anxiety disorders go through). I can no longer feel my chronic lower back pain and was able to get off all of the meds I was taking for that, which was a bonus. I would experience random traveling itching all over my body and was disgusted with skin to skin contact, even my own skin. My sex life changed dramatically because things that used to turn me on didn’t so I had to learn what did. Lots of weird changes… No one said a word about any of them being possible.
Hi Holly, sorry for the slow reply, your message went into spam. I’m still working out about this website so bear with me.
I know it’s difficult for them to warn about all the potential issues as they wouldn’t want to frighten people, but I think they could go a bit further than just mentioning memory. It’s so difficult to know how to cope. But I’m pleased your back pain stopped, just a shame there are many other symptoms to contend with. Good luck with your continued recovered and thank you for your comment. x
FINALLY acknowledgement of tactile issues. I cannot stand to be touched, hold hands, have my boyfriend rub my back or anything like that.. I too now suffer anxiety, have headaches every day,and i never had headaches before, i cant drive more than 20 miles, i have difficulty with finding words, i am just not MYSELF and it has been 3 years. I had to retire early . I hide it pretty well and hear “you look great” if i see a former co worker , they have no idea it takes 2 hours to take shower and get ready because of the FATIGUE and dizziness nausea
Most days i think this cannot be my life….
Anyway thank you to the person brave enough to talk about sexual problems,most research on men, and to talk about the skin issues. I was beginning to think i was crazy. So glad i found this board.
Grateful,
Darlene
It’s the hidden symptoms that people don’t see that are the most frustrating. Yes people might think we look fine, but they can’t feel what it’s really like for us.
I must say reading your story makes me grateful mine wasn’t worse. You’ve been through a lot & experienced way more than me. Bless your heart & thank you for sharing. It gives me a new perspective & appreciation of just how lucky I’ve been. That said, I do feel like I should have been given more information. However, I’m beginning to realize that the doctors & nurses really don’t know what to tell you. They can’t see your injury & they aren’t you so they can’t possibly know what all is going to go on. Everyone has a different set of symptoms at different times & for different lengths of time. Or so it seems in all my research & talking with people. The ER allowed me to check myself out & I don’t remember it at all. I’ve racked my brain & I can piece together an image here, a memory of being cold & tired, but no names, faces or much else. I assume I told them I was fine & who knows what else to get out of there, but I don’t remember anything. I’ve tried to piece together the timeline from injury to home & there are major gaps. Again, you’ve been through way worse, but that’s my two cents. Love your post! Again, thanks for sharing!
It’s disconcerting having a brain injury no matter how “bad” it is. I agree that it would be impossible for staff to explain what all the symptoms to look out for are, but I wasn’t even told I had a brain injury. They didn’t even explain about concussion, although mine was actually deemed a severe TBI.
Anyway, I hope your continued recovery goes well and thanks for the feedback. Glad you enjoyed it.
Hello, I love your honesty, it frees others to speak more openly. You’re so right about the information given, or lack of it when you are discharged from hospital. The NHS has been amazing, I can’t fault the care I have had, but have found communication and information lacking, especially when a poorly brain tends to overthink everything. But then again, if I was given a long list of possible outcomes and recovery problems I think, I would have been totally overwhelmed and been very depressed, focusing on the negatives that I could be suffering from and not the positives that I can do, or relearn to do.
I find everyone person who has a brain injury has a unique story and their difficulties, that are different from everyone else.
I can relate to the bladder being full very quickly and I can’t wait, so I have become a ‘toilet spotter’ wherever I go, because I will need it. Constipation, ohhh awlful, I read somewhere that if you have a head injury, you need to hold your head while your in ‘action’ on the loo, why I’m not sure, but it doesn’t make you go more or easier and knocks your balance off, ha ha, sometimes there’s information overload, that’s not useful.
Best thing I have found in my recovery is reading blogs like this, after all you are living it, so bring on the contributions! It helps, gives hope, it’s not as lonely and makes you smile! 😀
Thanks Jo, I like to think it helps people. 🙂
Im embarrassed major . but I have an unusual symptom of my severe tbi. Im having vaginal issues. I want to know why and howto fix
It imagine that your nervous system needs to relearn what it needs to do. Perhaps an appointment with a gynecologist would help you and they could advise you on what to do. I had to do pelvic floor exercises after my injury and with time things got better.
Thank you for sharing. I have found information from the medical establishment to be lacking in all areas of brain injury. I struggle with temperature control as well as altered sensation especially numbness and tingling of my legs and hands. I am really grateful for your posts. I am completely lost at sea with this injury and lack of local resources.
Unfortunately it seems many survivors feel let down by the lack of information given to them. Perhaps doctors don’t want to confuse or panic us. But whilst that is a good intention, it leaves us bewildered and confused.
I’m glad my story is proving to be useful for you. Together we are all helping one another.
Thanks for sharing your story. I had a stroke just over 4 years ago, and yet I am still discovering things I’ve taken for granted are actually aftereffects of the stroke. I didn’t know enough to describe the symptoms in a way that the doctors connected them with the stroke, so nothing was explained to me. For example, I recently learned that the reason I felt like my tongue was swollen and didn’t fit inside my mouth (looked normal) was because of the swallowing problems experienced by many with the same type stroke I had (brain stem). I could swallow just fine, and that’s all they kept asking me, but the fake swelling is part of that condition. I can’t blame them, they asked the question, I just didn’t know the right answers. (Fortunately, that cleared up on its own after a few months.) It’s frustrating to struggle along, thinking there’s something wrong with my attitude, only to discover that it’s actually a physical disability and no one told me, but I imagine that if they had listed everything that could possibly happen after a stroke, it would take hours, and then I wouldn’t remember most of it anyway! 🙂 I can especially relate to your left-side sensation (cold water like a million little razor blades slicing into my arm!), and that’s one of the things I had to self-diagnose. My hospital doctor shrugged it off as “some kind of neuropathy” that had nothing to do with the stroke; my neurologist agreed with my assessment. Apparently, it’s extremely rare with brain stem strokes, so I’m glad I’ve been “allowed” to have the condition so we can work on minimizing it!
Think it’s time doctors stop using the text book when diagnosing which symptoms are and aren’t because of our brain injury- the brain is so complex that they need to accept that they’re not always going to be able to predict what symptoms a particular injured region will produce.