First Cardiologist Appointment

[LittleOne]

So after 4 months from symptom onset, 3 GP's, 2 ECG's and 1 24 hour ECG, I finaly have my first appointment with a cardiologist tomorrow.

I've had to work non-clinical for 2 months after 6 weeks off sick, can't walk up stairs without having to stop halfway, can't have hot baths/showers and can't spend all day shopping. There are many more but these are the ones that bug me the most. I feel old before my time.

I get light headed with standing or from sitting on my feet to kneeling. I also get dizzy and breathless. I can de-sat on laying back down. I get post meal tachy if it's a heavy carb filled meal. Pins and needles in my hands, tinnitus, brain fog, night sweats and the past 2 weeks chest pain if i've done too much. I also have depression and am quite low at the moment.

I don't know what to expect tomorrow and I'm scared he's not going to have heard of POTS (my GP thinks this will be the diagnosis) or know what to do.

Don't really know why I'm posting, guess I just know you all know what I'm feeling. I get the impression most people around me don't believe me. It's invisible, they don't understand which I don't blame them for, just makes it more difficult.

[dkd]

Good luck tomorrow. Hopefully you're on your way to getting some help. It took me about about 5 months to get to a cardiologist that actually could help me. I saw a 'regular' cardiologist and he didn't catch on to the dysautonomia. It was a few months later that I had another pre- syncope episode that I actually got to see the electrophysiologist in the group and he did my tilt test and prescribed meds for me. Do you know if your cardiologist is an EP? They know about the heart rhythm stuff. A tilt table test is probably your next step. I hope it goes well!!

[LittleOne]

Not sure if he's specifically an EP but reading up on him one of his interests is arhythmias so fingers crossed!

Thank you dkd x

[looneymom]

Hope your appointment goes well. Keep us posted and if you need to vent. We understand, we've all been there.

Rachel

[BeforeTheMorning]

I hope you have a good appointment, let us know how it goes. Hope the cardiologist will know about POTS and be able to help you.

Best Wishes,

Lyla

[corina]

Hope your appointment went well!

[LittleOne]

I need to vent again!

So...got there and had my 3rd ECG. All normal.

See the consultant, asks about symptoms etc. Does laying to standing BP, normal.

Prescribed beta blockers Bisoprolol.

I asked if he thinks my GP is right about it being POTS. He says...well it could be, you have symptoms of a syndrome that are also symptoms of other things so it's difficult to know. It could be a different type of dysautomia. But see how you go on the beta blockers. We'll also do an echo because of my de-sats and chest pain.

Am I missing something? Should he be looking into it a bit more?

Don't get me wrong I'm pleased he listened and didn't laugh me out the room and is trying some treatment. But. I'd like a bit more of a diagnosis than that.

[BeforeTheMorning]

When I had an Active Stand Test back in April last year I met the criteria for POTS but I was only told that it looked like I probably had POTS and I should drink more water, eat more salt, etc. I didn't get my official diagnosis until December (when I actually saw my doctor for the first time) after going through lots more testing. I think there are lots of things that can give you the symptoms of POTS and doctors often like to rule things out before giving a definite diagnosis. Did your doctor talk about doing any other tests? That's good that he's already prescribed a medication that he thinks may help you, I'm still waiting to be started on a medication that my cardiologist was thinking about after my Testing back in April! Hopefully that won't be too long now.

Anyway, I know it is frustrating not to have an official diagnosis, but I hope that the medication will help you.

Best Wishes,

Lyla

[dkd]

Maybe you could ask for a tilt table test and see what he says. The treatment may be the same though. So, maybe he's just trying the meds first to see if it helps. Testing can get expensive and you still wind up with the same treatment.

Did your heart rate go up when standing? It's good he's doing an echo at least to check the structure and function of your heart. That can alleviate some worry.

I still wonder about the underlying cause of my dysautonomia. After a year of 10 different doctors, $7500 in deductibles for doctor visits and tests, I still have no answers and still have symptoms that aren't any better. My heart rate is down though due to beta, so I feel a little better in that area.

I hope the beta helps and don't hesitate to call the doc if you feel worse. It may take trying a different one if it doesn't help.

[LittleOne]

The only other testing he mentioned was the echo and a review in 3 months. No mention of further testing to rule other things out.

Thankfully I'm in the UK so have the NHS to rely on so would really like him to chuck tests at me!!

I'm going to talk to my GP tomorrow, see what she says and explain that I'd like piece of mind that nothing else is going on.

Feel odd today, have had a headache for a few hours, not shifted by paracetamol. Really tired too. But resting HR is lower. So fingers crossed.

Thanks guys.