Living With Postural Orthostatic Tachycardia Syndrome (POTS)

Well hello again, it’s me and I am here talking about yet another condition I have and wanted to write about living with Postural Orthostatic Tachycardia Syndrome (POTS).  Now out of all of my conditions, this was the biggest fight I had on my hands, firstly finding out what it was and then getting it diagnosed!

So I wanted to talk about it and why it is important to highlight this condition as many have Postural Orthostatic Tachycardia Syndrome (POTS) or Postural Orthostatic Hypotension Syndrome (POHS) and wouldn’t even realise. Just carry on with life as normal assuming that it is normal to feel this way, just like I did.

I am going to get into what it is, how it affects me but also touch upon why it was so hard to get a diagnosis, and how I managed to (despite some fighting!)

Let me get into this for you and you are welcome to comment or email with your story! Let’s get this out there…

What is Postural Orthostatic Tachycardia Syndrome (POTS)?

In short, this is a condition where you go from lying down to standing and have an abnormally high heart rate due to this. Usually, over 30bpm increase (although this may vary) and a lot of people will have either presyncope or syncope. (Almost passing out, or passing out).

POTS is prevalent through female teenagers, viral illness, pregnancy and, autoimmune diseases and chronic illnesses. Yet the true cause is not quite known. So of course, I started to really notice this during my first pregnancy and that is where the fainting had started. I am not sure if I had very light presyncope symptoms prior, I could have done but I presumed that was M.E (Myalgic Encephalomyelitis).

Now for a general diagnosis, it is an increase of +30bpm and no significant change in blood pressure for about 10 minutes. Usually they will offer a tilt table test to watch what happens when you go from lying down to standing.

I stood the whole 45 minutes strapped to a bed and retained a high rate over 200bpm.

POTS has even got it’s very own page on Wikipedia explaining what it is and giving some medical details on it.

It is a really debilitating condition and or me, it has changed how I live. I struggle a lot of the time to do everyday things and have to plan things in case I am unable to do something.

On a typical day, I have to spend periods sitting down because I am about to faint. I am super lucky I have pre-syncope symptoms and know for the most part when I am about to faint.

Symptoms of (POTS) Postural Orthostatic Tachycardia Syndrome

Obviously, the most common symptom is an increased (and mostly retained) heart rate when standing. However, there is also a wide variety of symptoms connected and you would not be surprised that this coincides with chronic illnesses such as Fibromyalgia, Ehlers–Danlos syndrome (EDS) and M.E (Myalgic Encephalomyelitis).

Other symptoms can include but not everyone has them:

• Presyncope/Syncope (Almost and fully passing out)
• Dizziness and lightheadedness
• Palpitations
• Tight chest or chest pain
• Headaches, brain fog, visual issues, cognition issues
• Stomach issues (IBS, nausea, gastroparesis, pain)
• Poor sleep, inability to sleep
• Exhaustion and fatigue

Plus many more! Like other chronic illnesses, the symptoms can cross over into other conditions also.

Dehydration can make it much worse, so keeping hydrated is very important!

I have all of the above symptoms, although I no longer pass out fully, it is very rare as I have controlled Postural Orthostatic Tachycardia Syndrome (POTS) now.

My Story on Living With Postural Orthostatic Tachycardia Syndrome (POTS)

So I guess my story begins more specifically at 17 when I was pregnant with my first son. I had many episodes of syncope especially when I was outside of the home. I couldn’t leave the house on my own and I had to work, so it became super difficult. The GP put it down to pregnancy.

I had symptoms prior, pre-syncope and high heart rate, however, I thought it was normal to feel this way as I knew no different. I never knew ‘normal’ due to being sick from a very early age. See my post on living with M.E which explains more.

Most of my life, I had ‘dizzy spells’ and feeling a bit wobbly or off my feet. I never really thought anything was wrong. I presumed for a long time, that this was normal. Of course, I’d never asked anyone as I didn’t think much of it. Mostly coincided with my throat pain, swelling and generally feeling off.

During pregnancies, it became worse which is quite common though pregnancy. Many experience the symptoms of Postural Orthostatic Tachycardia Syndrome (POTS) and just think it’s exhaustion or something to do with pregnancy.

I’d faint quite often, especially when I was in the shower or getting out of the bath. I had to make sure someone was with me so I didn’t keep hurting myself

There would be times it was so bad, I couldn’t physically stand up without passing out.

After pregnancy, it was bad, but not so bad I was fainting a lot.

The fainting episodes became less frequent, but the pre-syncope episodes were every day, several times a day.

Around 2014 after having my youngest son, I was added to a support group for chronic illnesses and someone had mentioned these symptoms. It was like a lightbulb moment. Oh wow, this is what I could have?

So then I went to a GP about it, explained the symptoms and was claimed to be anxiety-related. I’d left feeling confused and unsure why it was related to anxiety.

From there, for 3 years I had pushed and pushed and got nowhere. From anxiety to M.E/Fibromyalgia, there was no reason why I was like this.

Then in 2017, I ended up in A&E with a high heart rate at around 290 that wouldn’t come down. This got me on the road to see a cardiologist.

So I spent the night in A&E, seeing various nurses, doctors and eventually a cardiologist on duty who advised it was Postural Orthostatic Tachycardia Syndrome (POTS) and they would write to my GP to advise they need to get be booked in with the cardiologist.

My GP surgery never received this letter.

6 months go by, I make an appointment and ask if they received the letter, they claimed no. Checked my notes and said let me call the cardiology department. They did and the cardiologist there said yes, why wasn’t she referred last time? The GP was red-faced and blabbed on that there was no letter from them, but they said I see you have seen her several times in this period and refused?

Voila, finally! I get to see the cardiologist! After years of GP’s saying it is only anxiety, I knew there was something else going on.

I had an appointment within about 5/6 months, and that started the tests.

I’d had a tilt table test done, along with many cardiac tests and eventually an electrophysiological (EP) study as they kept seeing something on the echos.

From the tilt table, I had a diagnosis finally.

There were many medications, but essentially, I managed the condition myself.

My Symptoms Of POTS

I get quite a few symptoms and sometimes I get loads, other times not as many.

There are also triggers which I wanted to touch upon.

Firstly the symptom of a very high heart rate on standing. My heart rate goes from between 70-90bpm to 220 on a good day, it increases higher to even 290 on a bad day.

When I eat, I also get tachycardia which is a strange symptom of this. It doesn’t matter what I eat, I think it’s due to the blood going to my stomach to help the digestive system work so it’s taking blood from my brain and setting off the tachycardia, like when I stand up. Weird and wonderful symptoms of Living With Postural Orthostatic Tachycardia Syndrome (POTS).

Along with this, I get palpitations, more so when I am stressed and my heart rate is higher than usual. I do have another condition linked to this, but sometimes this can trigger the palpitations.

Fainting – Now the fainting is on and off. I can go months without fainting fully. Have periods of weeks where I faint often. But generally, I have pre-syncope symptoms.

So when I stand up, I feel woozy, hot and I tingle all over. Then my vision starts to go black with stars. I sit down and I am fine. So I just crawl around for a while.

When I have fluctuations of this, I struggle to sleep. Mostly from the randomly racing heart and palpitations.

I’m mostly dizzy and light-headed. It gets annoying as I struggle to do a lot because of it.

There are probably more symptoms that I don’t know about, just thinking it is something else. But these are the most notable!

Final Thoughts

This was a long read, I am very sorry about that! I just really wanted to get across what it is like Living With Postural Orthostatic Tachycardia Syndrome (POTS)

It’s a lot to get down and have broken it up into other posts which are linked throughout the post, like how I manage the symptoms or other conditions which are alongside this.

If you feel you have this or something similar, please do speak to your GP and show them this. Most GP’s haven’t heard of this, or presume it’s a teenage/pregnancy condition.

It’s super hard to live with, but you can manage ot. Remember that everyone is different and what worked for me, might not work for someone else. But it’s worth a try.

Higher salt intake and more water is generally the most effective. Also exercise has helped some, but not me.

My life has changed through this condition and I have days where I struggle to cope. I can’t do everyday things and send my day sat down feeling useless.

But I am not useless, I am strong and just have bad days a lot. Yoga has helped a lot and I explain how I manage POTS.

Let me know below how you deal with this condition. Does it make life hard for you? How do you cope and what works?

I tried 30 days of Yoga and the experience was life-changing!

Copyright: Image by StockUnlimited