This blog is part of a series of 4

Read part 1 here

Read part 2 here

It’s been six months since the heatstroke and still I have no answers, I haven’t found anyone to help me. My trip to hospital ruled out some nasty brain diseases and infections but still I have a sense something is not right. Each day I feel my brain shutting down, my world getting smaller by the day. I can do less than the previous day.

My World Getting Smaller

My short term memory begins to fail, I start writing lists and reminders for everything, including having a shower and getting dressed. My brain can’t manage these simple tasks. I am too overwhelmed to put together an outfit, or decide what to wear.

I stare blankly looking at my clothes for hours because I’ve forgotten how to coordinate a top and skirt and what shoes to wear with them and the right underwear. Most days it’s easier to stay in my pajamas.

I can’t think how to coordinate my arms, hairbrush and hairdryer to dry my hair. I sit on the toilet lid and cry because I just can’t do it.

I begin to lose the ability to talk myself, I cannot use my brain to cheer myself on the voice inside that says, come on Sarah you will be alright, this is just a bad day. My brain is empty, neither negative or positive. The silence descends on my brain and my mind goes blank.

If I sit down in front of a hot plate of food, my brain spins out of control. The steam hits my face, the heat feels like a furnace, my eyes blur, head spins, I overreact to the heat breaking out into a sweat. I gag, run out of the room, away from the evil food and try not to spew. The worst is I am unable to drink by beloved tea, it’s ice cold water for me only. Without my tea, I feel like all the joy has left my life.

At the beach to get some fresh air, and the sunlight and heat, even in the shade with a strong sea breeze blowing, I’m overheating. I starting to feel the sweat dripping down my body, my eyes are watering, I’m spinning, feeling dizzy, nauseous. I need to lie down, quickly, my head on the sand for half an hour while I try to calm my body’s overreaction to the heat.

The 100 m walk to the car gets me out of breath and I’m dizzy and have to hold onto the car to steady myself. The waves on the beach give my brain a headache.

Researching Heatstroke

I read every book I can find on brain injury, stroke, brain infections and heatstroke. I find reading a challenge because the vertigo gives me double vision and headaches are relentless. My brain feels like it’s is going to explode, I can hardly read the words on the page, I reread a page 3-4 times before i can get an idea of what’s written.

At this point the pressure in my head was so great, after breakfast in the mornings I immediately pass out for two to three hours.

After that, my head feels so heavy I don’t feel I can hold it up. So I lie down for hours. Most days it’s mid afternoon before I can sit up a little. By then, I feel like there’s is a tiny bit of room in my head, which gives me some thinking space. In those few minutes I research what I can. I repeat this process day after day, searching searching for help. It is such an effort but I think if no one will find out what’s wrong with me, how will I get better, when my symptoms are getting worse by the week.

My hurting brain affects my speech and language. All I can say is, my head hurts. I have a headache. I repeat this over and over. I send what articles I find to parents, sister and friends to read for me because I can’t make sense of it all the science behind heatstroke and headaches.

It’s difficult to communicate these experiences to those who haven’t experienced their brain swelling up and switching off. I read books about people with brain injuries and connect with their experiences but I still feel so alone.

Definition of heat stroke: A form of hyperthermia associated with a systemic inflammatory response leading to a syndrome of multi-organ dysfunction in which encephalopathy predominates.

Source: BY CAREY HEMMELGARN , DVM , KRISTI GANNON , DVM

I can’t even read that definition, look up every second word in dictionary to understand.

I find a little about heatstroke and find out that not much is known about heatstroke.

Exertional heat stroke patients describe lasting symptoms of difficulty adjusting to variations of heat, brain fog, vertigo, daily headaches, lethargy, muscle soreness, unexplained blood pressure drops, cognitive and short term memory loss. Neurological damage is unknown as studies on heat stroke survival is limited.

During this time, I receive a phone call from my ever searching for answers GP,

Actually we did find something unusual on your blood tests.

Yes, I’m hopeful

You have higher levels of dopamine and serotonin than average which is the first positive test you’ve had in six months.

It doesn’t really give me any clues maybe explain a bit more about my personality.

Blood pressure socks
The blood pressure socks are back on

Learning to Choose My Battles

I’m recommended to see another doctor who specialises in chronic illness management.

The appointment doesn’t start well, when the doctor doesn’t even want to shake my hand, I insist, so she gives me a quick limp shake. I feel like I am a contagious illness to her and not a human being.

So what’s your complaint? The doctor asks, reading my file and not looking at me in the eye.

I’m dizzy, tremor in my hands, headache, lost sense of time, can’t drive, can’t walk from constant vertigo, low blood pressure, memory loss, cognitive dysfunction, light sensitivity and I’ve got this headache. I need to find out what’s wrong with me…

She cuts me off. Within two minutes of the consultation, she’s miraculously diagnosed me.

You clearly have a severe case of anxiety and possibility depression.

But what about this headache? Is there a scan for my brain?

I’m for one thing, not wasting good taxpayers money on unnecessary tests for someone who is clearly MENTALLY ILL

Despite what my previous, hardworking GP has written in her referral, who puts in a good word for me, saying how I’m doing well mentally and doesn’t think this illness has any psychological causes “she has no secondary gain from this situation” however her assessment don’t seem to make a difference.

The doctor who still won’t look me in the eye continues, YOU need to learn to live with your new level of health, this is your new NORMAL now. I suggest you get use to not being as active as you once were. You’re never going to be sporty again.

I don’t think you heard me, I have a headache and other symptoms

Ignoring me and turning back to her computer, typing furiously, she reports:

“I have briefly discussed the role for psychotherapy in the manage of chronic unexplained symptoms. I am not sure how this has been received”.

Despite my throbbing headache and dizzy vertigo, I say, I can see this is not going to work for me.

I walk out of the room, I don’t have another minute to waste with a doctor who doesn’t have the time to listen to me. Anyway, I’ve got more research to do, and better doctors to find. I’ve only got limited energy reserves so I’ll choose my battles.

As I leave, the receptionist reminds me, we don’t bulk bill here.

Back to Hospital

Meanwhile, my symptoms are rapidly changing, suddenly my blood pressure drops low again. I feel dizzy constantly stay seated in case I faint. The veins in my legs throb, the feel like they are gonna explode.

I feel like a water bottle with fluid sloshing around my body, every time I sit down, stand up, like the blood is circulating too fast through veins and I can see my legs throbbing pulsating with fluid. My veins are beginning to get sore and they keep me awake at night.  

Blood pressure
My heart rate is dropping really low and spiking high making me feel faint all the time

I’m off to hospital again to have my heart monitored and investigate why my heart rate spiking. Again, I feel unwelcome.   

A doctor comes around to see me, he looks about my age.

Sitting on the side of my bed, he very ‘friendly’

What’s your problem?

I’m so dizzy, my heart rate jumps from 30 to 170 in a minute…… I can’t even do the most basic things like wash my hair. My sister helped me.

Well you’re hair looks really nice

Thank you

We’re doing some tests on your heart to see what’s wrong. But you’re probably dehydrated, don’t worry we’ll get you better

He pats me on my knee,

I’m not dehydrated, there’s something wrong with my blood pressure.

Well we are doing what we can to investigate.

Pat pat, he moves closer on the bed.

There is one thing we need to rule out.

Yes?

Well you could be pregnant. So I’ve organised a pregnancy test.

I’m not pregnant. I have a headache.

Well you don’t know for sure.

Pat Pat, on my knee.

I do know for sure. And if I am pregnant it will be the second case of divine conception in the history of humankind.

The doctor blushes, his hand suddenly comes off my knee.

Ok, then.

The doctor is off the bed now and scurries back to the safety of the ER desk.

Half and hour later, he returns with his report.

I’ll be recommending that you see a psychologist for counselling. I’ll write you a referral.

Again, I request those discharge papers.

Does Anyone Believe Me?

It’s so hard to keep fighting for myself to be heard and bring their attention to the original incident of heatstroke. I feel drowned out amongst all the medical options.

I kept searching, searching, searching, reading medical journals even though my brain hurts constantly from the cognitive struggle. I won’t stop until I find someone who will listen.

I had to go to Adelaide to find them,

We suggest you come into the clinic IMMEDIATELY

Sigh, finally someone believes me.

Continued Part 4

Thanks for listening

mermaid tail

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