I think I’m a hypochondriac, I suspect they do too!

[BritTania]

Since I was 19 I’ve been aware of ‘extra beats’, repeated daily palpitations, arrhythmia, tachycardia and quite a few episodes of SVT that happen to me. 25 years ago, I had my first long-winded & scary episode of SVT where we lost sight of how many beats after exceeding 254 bpm. I fainted and as I was being hooked up to the ECG the HR began to drop to normal. I was released home with no further treatment. When the palpitations again became chronic, I was given a 24hr monitor. Nothing showed so was sent away and told not to stress. Not to be so focussed on myself. The arrhythmia continued to a stage that I couldn’t walk any distance without either rapid HR or extremely slow HR & missed/extra beats . Laying down increased the incidence so that I was constantly catching my breath. So I recorded it myself, with a lot of jiggery pokery and took the recording to the Dr who said ‘Huh! Very clever!’ (When I explained how I’d recorded it.) ‘it’s regularly irregular!’ She announced and put me on 160mg of Propranolol. The effect was to increase my weight and waist size at the rate of 1” per month. I have pictures as evidence. That was ignored. The other side effect was I slept 16-18 hours a day. Schools often rang me to wake me up to collect my children as I would drop them off in the morning and wake up at 4pm having ‘just sat down for 5 minutes’. I pleaded with my next GP after we moved to lower the side. He dropped me down to 80 and then again I pleased for a reduction to the 40mg I ended up on. He advised to squat or massage my jugular vein to try to solve the issue, or to cough harshly. Still plagued by repeated episodes of tachycardia and palpitations, I had another 34hr monitor test. Nothing abnormal detected. I bought my own handheld one and was able to catch and show on charts the episodes. Showed to the GP and was dismissed. Had weeks of bad incidents do the GP did an ECG. Nothing captured. Told ‘Go away and stop wasting Doctor’s time! There’s nothing wrong with you!’ I was devastated! I cried all the way home and sobbed through the afternoon. A couple of friends who worked at the Cardio-Respiratory Dept were very sympathetic and asked how I’d gotten to the GP. ‘That’s why then, the heart sorted itself out when you exerted yourself walking all that distance! Happens as all the time with our patients!’ I felt somewhat reassured I wasn’t going mad. Years have passed. I had several more incidents where I had chronic reoccurrences of the palpitations. But I ignored going to the GP again. My BP has always been very good up until this last year. Fast forward a bit. After many health issues for my husband and a house move, I have another long SVT episode and end up in A&E in March. I cannot tell you how relieved I was to actually be able to show them this on their machines! Maybe now ‘they’ would believe me? They administered Adenosine Tri-Phosphate. After that episode in Feb/Mar I noticed a heady feeling increasingly & a weightiness in my chest. I also had days of trying to breathe air that was thick. Moving legs up the stairs with invisible weights tied to them. Frequent pauses to go up stairs. Sleeping 18 hrs a day. The headiness led to headache. So I took my BP and found it was very high, so I monitored it keeping track at home. Jan/Feb Range: S 153-193 / D 89-131. August Range: S 90-179 / D 49-173. We bought a new BP monitor as the readings were either really high or really low at times. My husband even bought me a home ECG monitor again, as I’d list the old one. I paid the GP concerned with the new extremes of BP. They did an ECG in the car during the Pandemic. Little handheld device. Again, no abnormalities. But concerned about the spike in BP, they got me to monitor and submit readings after a week. They were all over the place again. Very high or very low. So the Nurse Practitioner put me on Atenolol instead. Check back in 2 months with a form. Still great variations. Asked to pop in last week for a face to face. Took in the various readings showing the extremes. Explained I can be just sitting down and I feel like I’m melting as my BP plummets. Or doing shopping /exerting myself and go dizzy and lightheaded. Sometimes I feel myself almost stopping breathing in my sleep and have to take a deep breath. If I use my ECG machine it’s normal to see HR of 47- 55. The Nurses comment? ‘Could be panic attacks. Maybe you’re just monitoring too much, too aware of it, making yourself anxious? I get anxiety myself, like when I go get a Pap smear, I know my BP goes up too.’ When I reassured her ‘I’m not that person! I’m a very calm person, laid back’ she look my pulse (68) and finally said ‘Well maybe this is just how you are!’ I again left feeling I was wasting ever bodies time. I even said to my husband ‘You know what? I’m not even going to bother any longer. I’ll just ignore all of it - until I have a really serious episode or heart attack, then pop along to show them, as I really feel like I’m turning into a hypochondriac!’ I’m feeling very low, an attention seeker and pathetic.’ That’s how it’s left me feeling. Pathetic. What is wrong with me?

[bantam12]

It took me 6 years to get a diagnosis, numerous tests which came back ok then a change of Cardiologist who finally took me seriously ran all the tests again plus a 14 day ecg which clinched it, showed I was having long pauses amongst other things, now have a pacemaker and beta blockers.

If you haven't been referred to a Cardiologist then I would get that rolling then insist on a longer ecg, you have to be persistent otherwise they will just fob you off, sadly us ladies have an uphill struggle to be listened to 🤦🏻‍♀️

[Cliff_G in reply to bantam12]

"sadly us ladies have an uphill struggle to be listened to" Sadly so true.

[BritTania in reply to bantam12]

Thank you 🙏🏻

[Cliff_G]

Tania, you are in *no way* a hypocondriac, your description is totally normal for many of us, in varying degrees. You have deaf doctor syndrome.

Check Dr Sanjay Gupta's youtube videos on all sorts of arrhythmias, ectos, SVT, AF etc. I don't know where you are but I believe in England there's a choose and book system so see the cardiologist you want to see, if it's at all practical, worth trying to see him. You definitely need to see another GP too.

I suspect you have an autonomic issue underneath and causing your SVT etc. An irregular SVT is probably AF. SVT merely means a tachycardia above the ventricles, i.e. the atria. It can be sinus tachy (in rhythm but fast) or fib (fast but irregularly irregular).

In particular, a number of things you said make me think you have a strong vagal drive, where your incidences increase when your heart rate is lower (like at night, resting, after a big meal, winding down after exercise), and decrease when it's higher, such as during exercising. It's often associated with youngish, fit, people with no overt cardiac disease. Athletes are a classic case. I have this and had exactly the same experience of a troublesome a-fib which would disappear when seeing the doctor or having a 24 hr Holter. If this is the case, then beta blockers are actually contraindicated as they slow the heart and allow the arrhythmia to kick off. Also, massaging the jugular is known as a vagal manoeuvre and also makes vagal a-fib more likely, unless you're actually in a fast rhythm at that instant.

I can provide references to papers which discuss this, one in particular which shows about 1/4 of people have vagal AF, 1/4 the opposite, adrenergic, and the remaining half have a mixed picture. Too often doctors, including some cardiologists, don't understand this and of course if they aren't aware, they can't find.

[BritTania in reply to Cliff_G]

Thank you for your words, sympathy and offer. Yes please, I would like to read up on those issues .

[Cliff_G in reply to BritTania]

I'll look something out, but till then, Dr Gupta's Youtube is excellent.

[Cliff_G in reply to Cliff_G]

A key paper on numbers of the various sub-types according to "neural influences" is at academic.oup.com/eurheartj/... (pdf downloadable). Has a reasonable description and does outline at the end that things can be a little tricky to wheedle out as to whether you're one or the other or mixed. It's the only paper I know that actually said, right, let's see if we can differentiate. Most others either ignore it, pooh-pooh it, or blindly accept it as gospel. It is a little difficult to be sure but if you start to look at your own triggers, it's not difficult to decide. To correct my figures, I got two of the categories switched: it says 46% are adrenergic (the usual one known by doctors), 18% vagal and the remaining 35% mixed.

This is a good summary: richardbogle.com/blog/vagal...

Finally, this is quite a technical paper but the sections "Clinical relevance" and "Therapeutic implications" are reasonably readable researchgate.net/publicatio... There's a bit towards the end of Clinical relevance about the interplay between SVT and AF.

Lots of other stuff on the internet, some of it even accurate ! The original work is by Prof Philippe Coumel.

Good luck

[lettingoffsteam]

You poor thing...you have been through so much.I've suffered from ectopics and SVT for years and mine was written off as anxiety too.Last year my heart was racing for three days solid so I went to A&E where my bp.was 244/133.That got me a hospital stay and a whole stack of tests.Basically my heart is OK with some mild thickening of the left ventricle due to the bp. I left hospital on a lot of meds but even then doctors said they reckoned it was only anxiety causing my problems.Eventually I saw an electrophysiologist who put me on propanolol. Luckily I'm fine with it.

My point is as a woman you can get fobbed off with men playing the anxiety card but if you are struggling and symptomatic you need them to stop being so prejudiced.You are definitely not pathetic so keep trying to get help and eventually you get a doctor who will listen...hopefully soon.

[BritTania]

Thank you ☺️

[Hidden]

Hey never doubt your own feelings, I know exactly how you feel for almost two years my Doctor was baffled, I was given meds for anxiety. I was on and off BP medication, my readings were always high at the bottom which I found out later was because my heart was having to work harder. Have you ever had an echocardiogram? Do not let them fob you off.

Ask to be referred to a cardiologist. Wishing you well.

Elaine

[Fifimyangel]

Your not alone let me assure you. I too have suffered since my early 20s. Docs and specialists took no note. Until one day I saw a specialist who has since retired and he found a lot wrong with me just listening with a stethoscope. 8 yes ago I was given a pacemaker. Iv been doing really well and got on with my life and work. Then march of this year I bent down to pick something off the floor and had a huge bout of tachycardia. This was out of the blue. Since then iv had countless episodes one that put me in hospital for 3 days. I was sent home with a prescription after many tests only to be told its atrial tachycardia. I'm still getting episodes. They have checked my pm. And was told the battery is ok and working well. I'm now on a list to have 10 day monitor . So hopefully they will find out why its started after 8 yrs. I suppose you just got to keep going and like yourself I hope they can find out what's wrong and treat it once and for all. Dont give up. Your not a hypochondriac. And your not alone with this. Thousands of people suffer this. Thank goodness for this site. Good luck

[BritTania in reply to Fifimyangel]

I’m so sorry your PM didn’t sort your issue! My SVT also seems to trigger badly when leaning over. Best of luck with your next monitoring session.

[Smileyian]

Wow - I assure you, I can relate to much of that post. Please see posts and arrhythmia videos of Prof of Cardiology and Consultant Cardiologist in EP Dr John Cam (m). He is one of the most senior E.P.s in UK. I believe he Chairs an arrhythmia forum called Arrhythmia Alliance which is extremely popular. I consulted him (by luck's chance) in the 1980's when he was a rising star in Cardiac Electro Physiology with all manner of heart beat irregularities.

Google his name and Arrythmia Alliance as you will find his lectures beneficial.

I have had all manner of palpitations most of my life including paroxismal Afib to Perm Afib. Now at last Ablated: however still get SVT and trillions of ectopic beats. You were wise to post on here as you will have tons of support and I totally but doubly totally can relate and sympathise with your enduring frustration. I am 77 now and am willing myself to another 10 years even tho now diagnosed with Coronary Artery spasms after a very long time with various arrythmia. Thank you for sharing your post.

[Dazgad]

I get like this too , my advice save up cash and go private for an MRI, that’s what I’m currently doing there’s a company called vistahealth in London and they’re working on a cardiac mri package (because at the moment they only do the cardiac mri with the full body MRI package)

All these gp appointments and buying blood pressure machines will drive you insane like they are me, cut out the middle men and get a proper scan

[Dazgad in reply to Dazgad]

Also you don’t need referral for this company