Friday 5 April 2019

First Cardiology Appointment for POTS-like Symptoms

I had my first Cardiology appointment today, and I have mixed feelings about how it went.

I got there in good time, and signed in at reception. The receptionists were lovely, and I didn't have to wait long before I was called through for an ECG. I had a great conversation about Game of Thrones with the nurse! I was quite tense, so it took three attempts for a decent reading but it didn't take long overall. Soon after this, I was called through for a blood pressure test just before I saw the consultant. If I remember right, my reading was 145/85, borderline high.

The actual appointment with the consultant took about 5 mins. He seemed pleasant enough and told me to take a seat.

He sat back in his chair, and the first question he asked was "so, what do you do? Do you work?" I didn't think that was very relevant, but I explained that I haven't been able to work for a few years due to how my medical conditions affect me (chronic pain, extreme fatigue etc) I also mentioned that the dizziness and faintness also contribute to me not working and that was the main reason for me seeing him today.

He then asked me to explain my main issues, that had led to the referral to him. I described to him the symptoms (dizziness, faintness, palpitations, I forgot to mention headaches and vision stuff though damnit) as well as when they occur (standing up or sitting up for a while), what makes them better (lying down, salty snacks, hydrating well) and worse (overheating, overexertion, eating high carb meals etc).

He only really wanted to focus on the dizziness and faintness. He asked if I'd been referred to an ENT specialist. I said I had and was due to see them for Vestibular tests next week. (You can read about my first ENT appointment here). He then asked if I ever had fainted and I said only once, 5 years ago, as far as I could recall. He also asked how long an episode of faintness lasts and I couldn't think so ended up saying "a minute?" even though it fluctuates and I could spend most of the day feeling dizzy and faint, I did make sure I said it is triggered by standing or sitting up for ages. He said "oh everyone gets a bit of giddiness then". I then told him it was way worse than that though and has contributed to me giving up work.

He said that my ECG was fine and in his opinion, he didn't think I had any heart problems, but he'd get an appointment booked for me to have 24hr heart rate monitor fitted. I was finding it hard to concentrate at that point and explained I was listening, but I was very dizzy. He made sure I understood what he said though and I said I did and the 24hr monitor sounded good. He wanted to end the appointment there but I stayed sitting and asked him if he would consider assessing me for POTS and order a tilt table test.

He said he didnt think I seemed like a POTS patient but he would see how the 24hr monitor goes first, so at least I have a chance at maybe having the test. In my opinion, he did seem like he'd made up his mind about me before I'd even walked through the door. And what does a POTS patient "seem" like anyway?

Going back to the consultant's first question, the answer I would've liked to have given goes something like this:

"So what do I do? I struggle to get through each day. I try to look after myself the best I can. When I can concentrate, I game or watch tv shows/movies, I reach out to friends online and do my best to be there for them through good times and bad. I try to enjoy life. I sometimes look for work online but when I really think about what my health allows me to do, working is just too much physically & mentally. So I try to keep up my hobbies & I try to help others in whatever way I can. But I guess that's not enough in this "work or die" society"

Overall, I suppose the appointment went reasonably well? At least he is willing to see me again (even if he does seem to have already made up his mind!), but what do you think? Have you had a similar experience? Please comment below!

1 comment:

  1. Hi! I'm new to reading your blog but look forward to reading some of your previous posts.

    I'm sorry to hear your appointment didn't go better. The 24 hour heart monitor isn't a bad place to start, and maybe if it shows tachycardia he will be more open to a tilt table test.

    But like you, I have no idea what a POTS patient "seems" like. I have POTS, I have a number of friends with POTS. We're all different. We all have different symptoms and abilities and levels of functionality, and I wouldn't be able to tell any of us have POTS after a 5 minute discussion.

    I hope this cardiologist is willing to work with you to figure out what is going on - whatever that means.