Health Moments | P.O.T.S - My Story

Hi all,

I mentioned a while ago in my post on Getting Active, that I have a health problem called Postural Orthistatic Tachycardia Syndrome (P.O.T.S). In that post, I mentioned a little about it, but I wanted to write a proper post about it, because it is a large part of my life, and affects me in a lot of ways.

So, what is P.O.T.S?

Image Credit - Freedigitalphotos.net

You can find out all about the condition at Pots UK. There's some really helpful information there, about symptoms, triggers, diagnosis, and support amongst other things.

P.O.T.S is a very variable illness, some people will get more symptoms than others, and some will have more mobility than others. Below, I'll list the main symptoms of the illness, and the ones that affect me personally. The ones with an asterisk are ones which affect me every day, the ones that are just in bold and italics are ones I get frequently, but not daily, and the others are ones I don't suffer from, or very rarely suffer from.

• Dizziness or pre-syncope (almost fainting) *
• Syncope (Fainting)
• Palpitations
• Headaches *
• Brain Fog (Difficulty thinking/poor memory) *
• Tiredness
• Shakiness
• Nausea
• Chest Pain
• Poor Sleep *
• Visual Problems
• Sweating
• Purplish discoloration of skin due to blood pooling in hands and feet
• Bladder Problems

My Story.

When I was sixteen years old, I was on a placement in a school through my college course. I was training in childcare, and working in a school a few days a week, while other days attending college. 

Although through my childhood, I hadn't always been the healthiest, suffering from occasional dizzy spells, fainting one of two times, and a few other complaints, for the most part I was ok. At sixteen, I was fairly active. I used to walk to and from college/placement five days a week. I enjoyed going out with friends and family, and was looking forward to completing college, getting a job and learning to drive, among other things.

One morning, while on placement at the school, I was working in, I wasn't feeling well. I'd had a recent bout of illness, and I thought it was nothing major, just a cold. However, on that morning, I remember going into the school, feeling particularly bad.

It was as the students were arriving for class, that I began to feel worse. I remember standing to one side of the room, as parents, teachers and students were wandering around. The next thing I know I'm on the floor. A couple of teachers and parents are around me, and my main supervisor was asking people if I tripped, or if I'd fainted. One of the parents told her that I'd fainted.

I sat down for a while, until I'd gotten my bearings, and was given a drink, and then one of the teachers drove me home. 

My older sister was waiting there, after being contacted by the school, and told I'd fainted and would be coming home. By this time I was ok standing and walking around, and just felt tired. My sister had made a doctors appointment for me, and she took me up there. I was initially told it was probably nothing, and just to rest up a little bit. So I did.

I woke up the next morning, ready to go back to the school for my next day of work. However, my body had other ideas. As soon as I stood up out of bed, I collapsed to the floor.

My parents heard the fall and came in, and when they tried to get me up, I immediately collapsed again.

I was taken back to the doctors, and referred to the Syncope Clinic at the hospital. During this time I was collapsing everyday, every time I stood up. I couldn't move around without having someone support me up, and it was scary. I didn't know what was going on, all I knew was that I didn't have control over my body anymore.

I went to my appointment, and had to have a tilt table test done. Which meant being strapped onto a table, and taken from a lying position to a standing one, several times, while they monitored my heart rate and blood pressure.

The results? Well, each time I went into a standing position, my heart rate would jump up much too quickly, and end up going really fast.

The diagnosis was made. I had P.O.T.S.

I was put on medications, which did help to control the symptoms a little, but not much. I was still collapsing everyday, but not as soon as I woke up. Sometimes I'd get most of the day standing and collapse later. Sometimes I'd only collapse if I'd been standing for a long time, but some days I'd wake up and fall down straight away, and be down all day.

Because of this, I had to drop out of college.

Over the last six and a half years I've had frequent appointments, tests and alterations in my medications. Now I'm talking Midodrine and Ivabradine, and it's the best combination I've had.

I get days where I don't fall down at all, though I do still suffer from other symptoms, but it isn't perfect. I still collapse every week, sometimes several times in a day. I still have days, like today, where I wake up and immediately collapse to the floor.

Some improvements I have seen, is that I can collapse and after resting up for a couple hours, I'll sometimes be able to stand again.

However, I do sometimes need to use a wheelchair. I'm not allowed out on my own, even in the chair, because I've been known to collapse while sitting, and I get no warning of when I'm about to drop.

I'm not allowed to stay at home on my own, because I frequently collapse, hit my head and end up unconscious on the floor.

I'm not allowed to drive. I can't go out and get a job. This illness had limited my life in ways I never imagined having my life limited.

It's a mix of good days and bad days, and I try my hardest to focus on the positives.

I'm able to write, which is a passion of mine, and I've published four books so far. I'm able to run two blogs, and that's been so much fun. I've also been able to get a BA (Hons) Degree through distance courses with the Open University.

This illness is probably something I'll suffer with for the rest of my life, but I can hope for it to burn out. I can hope for it to become better controlled. Until then? I'll just make the most of what I can do.

Have you been affected by an illness? Let me know in the comments.