Can anyone help?

[Sineadlenehan]

Hi guys! I was just looking for some advice and support. I have been for the past year going through multiple tests to figure out the cause of my extremely high heart rate. In 2020, I suffered with chest pains and reoccurring infections. Which they believed caused the heart rate issues. By august of 2020, I developed an issue with fainting and had a major episode which resulted in a siezure. Since then They’ve told me many things from multiple tests such as Wollf-William-White Syndrome, Supraventricular eptopics and pericardial effusion. I have been for a tilt test since and heard nothing.. starting to think I’ve been lost in the system so wanted to reach for support

[jeanjeannie50]

Hi Sinead

What was your high heart rate?

Jean

[Sineadlenehan in reply to jeanjeannie50]

It will be resting above 90-100 when standing will raise to 120 that’s on a good day during exercise my heart feels a lot of pressure but sometimes even when resting my heart will reach 180-200 bpm

[jeanjeannie50 in reply to Sineadlenehan]

Well, that's doesn't sound right for you to have that high rate when resting.

It sounds as though you have a lot going on and if the experts are baffled, we are even less likely to be able to help. I would certainly chase the results of the tilt test, see if your GP has received the results.

I hope another member who has perhaps experienced something similar, will be able to give you some support.

Please let us know how you get on.

Jean

[OutOfStripes in reply to Sineadlenehan]

Have you heard of PoTS?

[Sineadlenehan in reply to OutOfStripes]

Yes I have constantly question whether it could be this, however doctors haven’t mentioned the possiblity

[OutOfStripes in reply to Sineadlenehan]

My doctors never did either, never even listened when I brought in back up medical and scientific documents piecing together my symptoms for them…sadly was misdiagnosed and heavily let down by the NHS.

In the end I kept pushing and insisted on a Tilt Table Test, and was then put forward for full autonomic testing when they finally realised. Keep pushing and advocating for yourself- you know your body best ❤️ Xx

[OutOfStripes in reply to Sineadlenehan]

And it was your age that made me think also, coming in young women/child bearing age. My PoTS started for me post meningitis aged 22. Xx

[Sunnie2day in reply to Sineadlenehan]

Mine used to be that high (I have multiple well-controlled heart conditions, they think my 'exceptionally strong heartbeat' is owing to my recurrent pericarditis) - they put me on once daily low dose beta blocker plus aspirin (Bisoprolol 1.25mg+300mg aspirin) and it's been in the normal range (usually average 60-65) since April 2019.

[Sunnie2day]

Pericardial effusion? Did they see it on an x-ray followed up by an echo to determine amount?

[Sineadlenehan in reply to Sunnie2day]

It was found on an echo but the cardiologist has said he believes it’s only small

[Sunnie2day in reply to Sineadlenehan]

I have something similar (persistent minimal effusion). Have they ruled out recurrent pericarditis for you? I ask owing to mine causing similar symptoms to the ones you describe in your OP.

[Billypil]

Stay with it. My heart rate went up to over 200 and I had to rest as it didn't make me want to move about & I wasn't when it started that was many years ago. I then developed what was then called Bundled Branch Block then had a pacemaker fitted after having an RF Ablation to let the pacemaker take over. (That just meant that like in an Angiogram a device was inserted and the nerves in the heart chamber were made inactive. I didn't start to fain or anything like that but a nephew and a grandson had a problem like that and it was called vascular spasm. I don't know how or why it occurred but they both seem OK.Bill