query re DIY heart/circulation monitoring

[Judithdalston]

I have had symptoms for over 3 years post ‘the virus that cannot be named’ including high BP ( on 5 different BP drugs), but get HR raising from in the 70s on sitting to 130 on standing, plus some vertigo and breathlessness….weirdly notable not just on exercise ( I swim for 40 mins x5/week) but for eg standing up trying to cook at the stove. I have had two semi -lying down ecgs, two chest X-rays and an echocardiogram … all reported back as ok. I am on a waiting list to be tilt table tested for PoTS, but the falls clinic specialist has already suggested this as unlikely ( I am nearly 70!). A non cardio doctor friend wonders whether an ecg etc performed on standing( when I have breathing etc problems) might show something different happening; this would therefore have to be done outside the NHS. Anybody ever done this and got an obvious different result? What equipment might I need ( I have seen the BHF monitors they sell, and see other agencies hire them out), any ‘best buys’ etc for easiest to use and results taken seriously by medics?

[Alison_L]

Have you discussed this with your GP? Some surgeries have nurses who can do ECGs, so you wouldn't need a referral, or splash out on kit. The Kardia Mobile machines (starting at around £100) are used by medics (my local cardiac rehab bought a couple with money I raised for them), so the docs wouldn't dismiss the results.

[Judithdalston in reply to Alison_L]

The surgery nurse has done two ecgs over the last year, but at rest, with at least the last print out sent to the cardiologist to comment. I did wonder whether surgeries lend out portable ecg monitors, but since mine has never even done a 24 hr holster BP test, I suspect that is not on the cards for my surgery. I have looked at the Kardia 6l machines, but it becomes rather pricey doing all the DIY tests, manipulation etc!

[Alison_L in reply to Judithdalston]

Might be worth asking the nurse if they’ll do a standing ecg as that’s when you notice problems.

[Chinkoflight]

Hi, the NHS are fitting Medtronic Reveal LINQ ECG implants that accurately measure 24/7/365 your heart rhythms and send the data at nighttime via a bedside modem to a computer, I believe in Germany that learns your heart patterns and uses AI to determine whether things are normal or not. It sends a report back to the Cardio team supervising you. It is used where paroxysmal AFib might be present which is hard to check for using standard ECG equipment eg Holter monitors.I had a paroxysmal stroke. All the usual tests , treadmill, scans and a 7 day Holter couldn't find anything. The LINQ was inserted in February this year. In May I had a call from the hospital saying an Afib event had been detected. I was unaware!!!! It resulted in a change of medication from antiplatelet for the stroke, to anticoagulant for the Afib.

I'm not fully clear from your enquiry what your history is but if they are looking for possible Afib then this is what might be offered on current NICE guidance. I'm. male aged 71.

Hope this helps.

[Judithdalston in reply to Chinkoflight]

Hi Chinkoflight, my history really relates to earlier fatigue/vertigo ( fibromyalgia) getting worse post virus …. obviously showing with raised BP and HR, that drugs aren’t really touching yet something is obviously ‘not right’ and been discharged by cardiologists. Even my self diagnosis of PoTS ( with HR raising over 30 bpm on standing) has been queried by a clinician, whom I have yet to see, but I am on waiting list at last for tilt table test. I just seem to think I need more hard evidence to back illness up! Having an implant is rather OTP for my problem, but I am pleased it’s working. AI could greatly improve our health, soon.

[Chinkoflight in reply to Judithdalston]

My apologies, as you posted on BHF I assumed you were querying an Afib heart rhythm type problem. Checking potential heart problems with ECG and Holter monitors is relatively unreliable and costly in terms of staff inputs and analysis. NICE are advising the routine fitting of ECG implant monitors where paroxysmal heart rhythm issues are suspected. My trust are some way behind the curve having only recently started this change in monitoring options. The information is for general reading for others drawn to your post.