Taylah has been diagnosed with pots postural orthostatic tachycardia syndrome.
Postural Orthostatic Tachycardia Syndrome (POTS)
What Is Postural Orthostatic Tachycardia Syndrome (POTS)?
Postural orthostatic tachycardia syndrome (POTS) is a disorder that can make someone feel faint or dizzy. It happens when the autonomic nervous system (ANS) doesn’t work as it should. The autonomic nervous system is the body’s “autopilot” system, controlling things like heart rate, blood pressure, and breathing. This illness has many symptoms all of which she has and this has severely impacted her life.
Earlier in 2018, Tay started randomly fainting every now and then. As her mum I was thinking, she isn’t eating properly or she’s dehydrated etc. she would see her gp and he would say the same. She started having stomach pain to the point where she ended up in hospital and their only thought was appendix so she had surgery but pathology results suggested healthy appendix and zero explanation for the pain. The fainting became more frequent and resulted in her hitting her head a few times. One time was severe enough to need medical attention so again back to the hospital. This time, more tests were prescribed. It was suggested Tay had POTS. No idea what that meant but ok. We were told she needed to have a tilt table test to confirm but 90% sure that’s what’s going on. Ok so what is pots?
postural orthostatic tachycardia syndrome (POTS) is a disorder that can make someone feel faint or dizzy. It happens when the autonomic nervous system (ANS) doesn’t work as it should. The autonomic nervous system is the body’s “autopilot” system, controlling things like heart rate, blood pressure and breathing.
Symptoms can include
heart palpitations (feeling the heart beat or race)
instability (feeling like one is about to fall)
lightheadedness (almost passing out; vision tunnels or goes gray or dark)
passing out (fainting)
trouble getting enough breath
cold or painful extremities
redness or purple coloring in the lower legs
Most POTS symptoms happen only when standing or changing to a standing position. But these may happen without standing:
sweating without a cause (such as exercise or warm weather)
trouble sleeping or unable to sleep (insomnia)
Taylah has all of these symptoms and for extra fun she can’t keep food down so she needs to eat very tiny meals throughout the day otherwise she vomits. Since November 2018 she has lost 6kg.
Earlier this month Tay had the tilt table test. She was nervous, her resting heart rate was around 120. It felt like she was about to be tortured. They strapped her on to the table, injected her with a medicine that would make her heart race and tilted her upright. She immediately felt nauseous, she was shaking, I could see her heart racing, she said she felt hot, a heat rash appeared all over her face and neck, her feet turned purple and she said I’m going to be sick. At this stage her heart rate was at 190. They laid her back down and she vomited for about 10minutes.
Docters confirmed POTS.
Symptoms can very from mild to disabling. Right now Tays symptoms are disabling.
She is unable to drive, she cannot work, she can’t take her dog for a walk. She needs to sit on a stool to do a simple task like the dishes. She almost fainted mashing potatoes. All those little things we take for granted like getting the mail from the mail box or even having a shower exhausts her.
How did did she get this? There is no answer
Why did she get this? There is no answer
How long will she have this for? Who knows. Could be 6 months to life. Sounds like a prison sentence. Truth be told it kind of is…….
There is no cure for this condition but you can treat symptoms. There is a clinic in Melbourne that has a class for Pots patients but like all treatments they are expensive.
Tay plans to seek all treatment possible.
to name a few
Of course all of these treatments come at a cost and due to her being unable to work she has no way to support herself. According to our government she is our dependent until she is 22 so she is unable to get financial assistance.
We are doing our very best to help support Tay in every way we can mentally, emotionally, physically and financially and I never thought I would be one to use this platform to ask for help but here we are. I have supported several causes over the years for friends, family, friends of friends and even strangers going through tough times and now it’s our turn to ask for help
Please help Tay find a way to live her new “normal” life without pain.
If you don’t have the means we completely understand however you can help by sharing.
You can also help by giving Tay some words of encouragement, dropping in to say hi, spend some time with her. Anything to put a smile back on that gorgeous face.
We miss our beautiful happy bubbly Tay. Please help bring her back!