Postural Orthastatic Tachycardia Syndrome – My Journey So Far

Postural orthastatic tachycardia syndrome (PoTS) is a condition where your heart rate increases by 30+ beats upon standing within 10 minutes with no drastic changes to your blood pressure.

In short, when you stand up, your blood races to your extremities and stomach. In response, your blood vessels narrow and your heart rate increases to get the blood pumping back round your body.

This is all done without needing to think about it by the autonomic nervous system – the nervous system in charge of automatic body functions.

In PoTS, the autonomic nervous system doesn’t work properly. There’s a drop in blood supply to the heart and brain when you become upright and the heart races to compensate for this.

Your symptoms can come on all of a sudden or can gradually get worse over time. In my case, get worse over time.
Pregnancy was the worst period and never recovered after the last pregnancy. Increasingly getting worse.

This can cause quite a few different symptoms as listed below:

• Tachycardia
• Palpitations
• Shaking and sweating
• Dizziness or light headed
• Fainting/Blacking out
• Chest pain
• Nausea
• Shortness of breath

This is not a nice feeling at all every time you stand up.
Some days are worse than others and you can have days where you constantly black out.

In some cases this can be controlled without medication.
Higher water intake and salt is advised.
Also wearing compression socks or tights.
Tracking your heart rate with a watchman heart device and checking for unusual activity.

Medications can be provided to help also.

Every person is different and affects them differently. Some can be managed and others can’t.
Some symptoms are mild whilst others are extreme.

Dysautonomia

This word may be used also. This is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System (ANS).

The Autonomic Nervous System (ANS) controls the automatic functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control.

It’s common to have other conditions liked to postural orthastatic tachycardia syndrome like Ehlers-Danlos Syndrome (EDS) and Fibromyalgia.

My Story With Postural Orthastatic Tachycardia Syndrome

I have had this since my first pregnancy. I fainted several times throughout and was always light headed, nauseous (not morning sickness related) and struggled with constant tachycardia.
I did not know what this was. This was 13 years ago.

After pregnancy it settled quite a lot and the tachycardia wasn’t as frequent or as bad.

Second pregnancy came around and again I fainted often, had a lot of issues.
It went away slightly afterwards. I could still do daily activities.

Then the third pregnancy came along and it was terribly bad. I visited the doctors, told the midwives and they just blamed pregnancy.

I realised there was something wrong and this was not normal after pregnancy and the symptoms were still there.
Gradually getting worse over 3 years.

Doctors fobbed it off as M.E or Fibromyalgia after I was diagnosed with Fibromyalgia.

I didn’t really know what it was either… Until I ended up in A&E.

A lot of things were happening and I was under a lot of stress. Over a period of a few days my chest was so heavy and tight, I was fainting and couldn’t stand long.
I had called 111 for some advice and they sent an ambulance out as I was tachycardic (220bpm)
Ambulance arrived and checked me over, blood sugar was fine but my heart rate was climbing up to 230bpm and was not coming down even sitting down.

Off to A&E I went.

After 16 hours, I was diagnosed with postural orthastatic tachycardia syndrome (PoTS)

I was told to eat more salt, drink more water and rest more than normal. Also advised they would send a letter to my GP to have me sent to a cardiologist.

I had an appointment a few days later anyway with my GP so went to advise what had happened and armed with a new diagnosis.
The GP had no idea what I was talking about so wrote to the cardiologist asking what to do.
This was April.

By June I heard nothing, so made yet another appointment about it.
GP advised we had heard back from cardiology and I was to see a cardiologist, they received the letter in April?!
I asked why did no one contact me and she just shrugged and apologised.

I receive a letter for an appointment with a cardiologist in August, then find out the appointment was cancelled as I needed to see someone who had knowledge of my condition of postural orthastatic tachycardia syndrome.

I finally have an appointment for September so once I have been, I will update with what happened.

The point of this post I guess was to make people more aware of this delibitating condition called postural orthastatic tachycardia syndrome.
It’s quite unknown even around specialists and medical specialists, doctors and nurses.
Some will say they heard of it but no idea what to do. Some guess from the name.

Some days I can not stand long, I have to get around my house on my hands and knees because I pass out frequently.

Some nights I have brachycardia (heart rate below 60) and have chest pain, palpitations and struggle to breath.
I don’t know why I have it. I stand up, make myself tachycardic and it goes.

To give you an example.

On any normal day, my resting heart rate is around 70 which is perfectly normal. Within 2 minutes of standing it reached around 140.
Bad days it goes up to 220.

The bad days means a lot of chest pain, blacking out and nausea.
Some days I can barely get out of bed. I struggle to do anything and feel wiped out for days.

It’s crap, but it’s a part of me.

So when I see the same things popping up from people who suffer with this, family and friends saying they are lazy or making excuses not to do something or go out… Believe me, it’s no excuse.
You become scared of fainting. Every day is a fight to have a better day and do a little more.
We do all we can to help this, unfortunately with mismanagement by doctors we are left with no help at all.

No one wants to feel like this, it’s exhausting and you feel crap all the time.
I know I do, I have having to spend days recovering after going out (This is related to other conditions too)
I have to plan things in advance and get loads of rest, drink more water and eat even more salt (I don’t really like salt either)
No there is no cure. Sometimes things don’t work.

For example, you have low blood pressure like me. Taking medication used for high blood pressure can help however this in turn makes our blood pressure drop even more. Therefor we faint from that.
Regardless, we faint. Whether it’s from medication that helps PoTS but plummets out blood pressure, or no medication and PoTS.

It’s frustrating for us.

Now I await to see which type of PoTS I have (Yes there is more than one type)

A website I found regarding PoTS is very informative and worth a look!

Part 2 will be up once I have been to see the cardiologist.