Undiagnosed heart worries

[PurpleHawk]

Hi,

This will probably be a long explanation but I've been following this group for some time and you are all fabulous at giving advice so here goes.

I've just turned 52, ex smoker and overweight - I have lost over 10kg over the last year or so and have also made an effort to reduce caffeine/alcohol intake. Over the last 3-4years I've had Ectopic beats which seem to be increasing in annoyance as time goes on. I was classed at pre-diabetic couple of years ago but reversed that. My last bloods all came back bang on normal.

I have had previously (last year) 24 and 7 day holster monitors which have both come back with benign Ectopic beats.

My sister had a HA at 47 and my dad at 65. My cousin also passed away from heart failure at 56 so strong family history.

Recently, I've been getting some light headedness from time to time and in addition I've had a kind of clammy cold feeling which I've always put down to the joys of menopause. Also had random feeling of bloating under my ribs - usually when I've had a very sedentary day after eating which has been linked to a previously undiscovered large benign ovarian cyst ( ut that's another story).

To top all this off, I often get upper arm pain / back pain as I've got distal tendonisis from repetitive strain so just shrug off arm pain as this - I have mentioned about the heart history but the psychotherapist and doctor are both saying this is normal pain with the tendon issue and not to worry.

I have previously gone to a&e when my symptoms have bothered me on 4-5 occasions over the past 18 months when I've been sufficiently panicked enough to think it's a HA and have always been told blood are bang on normal, ecg's are always OK (they never seem to take the darn things when my Ectopic beats are going crazy!) and go home.

I'm awaiting a cardiologist appointment (since last may!) and when I called up, was told it would be April at some point so there's a light at the end of the tunnel I guess.

The rational part of me thinks I'm just overreacting (and I probably am). However, the irrational part of me means I am often a total wreck over this. I'm finding it very difficult to articulate to my doctors without being in floods of tears, and over anxious me feels I should be doing something to push this further but feel like I'm being a nuisance / wasting precious NHS resources/being a hypochondriac /etc.

I essentially feel very alone and overwhelmed with upcoming major surgery etc. it's not helping my mental state - I often go to bed wondering if I'll even wake up.

Anyway - now I've got all that down I was wondering if anyone had any tactics / thoughts on how to push this forward to at least get some confirmation one way or the other? Is it even worth considering the private sector or just riding it out?

Thanks in advance!

[Jalia]

I do understand what you are going through.

In your position and with the state of the NHS I would seek a private appointment if you are at all able to. I had a private appointment with a cardiologist a couple of years ago who was an absolute gem , far better than any NHS consultations I've had. .You shouldn't have to do this but that's the way it is.

Hopefully this will put you in a more relaxed state of mind.

Best wishes

J

[PurpleHawk in reply to Jalia]

Thank you fo for sharing your experience Jalia. I am considering this. Money isn't too much of an issue thankfully and certainly not the £250 it will probably cost just to be able to speak to a specialist and go from there. I will try and speak to my doctors regarding this tomorrow.

[Eewee]

not exactly the same experience but some similarities. I had afib but was told it was ectopic beats on more than one occasion by the gp. After a couple of years of this I asked for further investigation was given an ecg and a chest xray. A couple of weeks later had a call regarding results of xray, heart “slightly “ enlarged. To be referred for an echocardiogram. I was told it would be soon which unnerved me but no appointment came so I went privately to see a cardiologist who immediately gave me an echocardiogram. The fact I had done this myself saved my life as I had severe aortic and mitral regurgitation and needed as a matter urgency OHS. That was a year ago. My only point is that if you are not content with what you’re being told take control. It was life saving for me. Good luck.

[PurpleHawk in reply to Eewee]

Thank you for taking the time to read my mini essay and reply Eewee! This for me is what's missing. I've had numerous ecgs but the symptoms seem to be more frequent and every time I get an ecg at a&e it never seems to be when my Ectopic beats are going crazy. It's seeming like going private is the way forward.

[Traveldreams]

Not a similar experience to mine except for the wait. Gps (and their receptionists) have a handy knack of making us feel like neurotic time wasters. I’m not saying they intend to but they don’t know their patients anymore and assume that you’re in a queue and should just wait. Even post surgery I’m continually contacting them because they haven’t actioned my discharge letter.

If, like me, the NHS is your only choice then you must continue to contact them if you’re in doubt. Your appointment is almost here but it is such a long wait that the emotional strain makes the physical issues worse. I absolutely know how you feel but I tend to be a bury my head in the sand person. Do you have a home blood pressure machine or can you afford a cheap one? I found that having screenshots as evidence helped. Even when my left leg swelled to 3 x its size due to heart failure the Dr thought it might settle down. A few dated pics alongside contact details are sensible in my opinion. Remember when they take calls they have no choice but to prioritise them in our current situation. Having the evidence compiled might help. Good luck x

[PurpleHawk in reply to Traveldreams]

Thanks Traveldreams for sharing! I know I just probably need to be patient but I'm just so unbelievably stressed it's taking over my life right now. Money, thankfully, is not too much of an issue, certainly not for a one of consultation at least. I'm one of those people who can deal with it once I know what I'm dealing with - it's the unknown that terrifies me!

[Traveldreams in reply to PurpleHawk]

It is stressful and all consuming. I feel like 18 months of my life has been stolen but know I need to make the most of what I have now.

Keep in touch and let us know how you get on. X

[maggie80]

It sounds as though you need an ECG, If you make an appointment at your doctors they could do an ECG at the surgery.

[PurpleHawk in reply to maggie80]

Thanks for taking the time to reply maggie80. Sadly, my GP practice doesn't do ecg's. The only way is to turn up to a&e and wait - often for a very long time to no avail as invariably the ecg comes back fine. Timing is everything and my Ectopics just dissappear. 😕

[maggie80 in reply to PurpleHawk]

Hi, have you checked at the doctors surgery. Last year I went to the surgery ,had an appointment with the nurse and I had an ECG. Keep trying.

[PurpleHawk in reply to maggie80]

Hi Maggie80 - yeah and they simply do not have the facilities / trained staff to do ecg's there. The only way I can get a proper ecg done is to either attend a&e or have one booked in at cardiology.

All the gp has is a Kardia single lead device.

[maggie80 in reply to PurpleHawk]

Hi, call in at Boots pharmacy, ask to speak to the chemist. It won't do any harm.

[Choccie55]

My ectopic beats increased massively during peri menopause and eventually I was diagnosed with SVT. Hormones have definitely made my symptoms worse and episodes more frequent. Palpitations are a symptom of menopause. I am on beta blockers for SVT which have also helped to control the frequency of my ectopics. I was always told ectopics are generally benign and are only of concern if you have too many - but this is literally thousands a day. Good luck with your cardiologist appointment. Heart rhythm problems are notoriously difficult to capture on ECG. Check out the British Heart Foundation website for information. If you are struggling mentally contact your local NHS Talking Therapies - you can self refer. It’s certainly helped with my anxiety around heart health.

[PurpleHawk in reply to Choccie55]

Thanks Choccie for replying! Yeah, I think the perimenopause is what's triggered all of this off and it's just becoming more and more frequent so I can feel where you are coming from! Sadly, the HRT doesn't seem to touch it (though I don't get hot flushes anymore - silver lining there I guess)

I'm already on Bisoprolol (though a relatively low 2.5mg dose) which does help a little. They did try switching me to another calcium channel blocker(can't remewhich) but I felt awful on it and my Ectopics went wild so soon switched back. My normal resting heart rate is in the low 60s and can drop slightly under at times so I'm very loath to increase the dosage as I often seem to spend half my day in a dizzy daze as it is...

I did sign up for a talking therapy yesterday via the NHS site so hopefully that will help.

[Choccie55 in reply to PurpleHawk]

Bloody hormones 😂! I’m on 2.5mg too. I can’t increase the dose as my blood pressure is naturally low, so like you I often feel dizzy or light headed. I’ve now decided to have an ablation and am on the waiting list. Good luck with talking therapies.

[123isla in reply to PurpleHawk]

I have had some similar issues and am waiting for a telephone consultation in April...don't know how anything can be resolved on the phone. Anyway about your talking therapy hope it helps..I've just finished 10 weeks with NHS and found it very useful. Also there is a Web site I find very useful,, the empowered Mindset. Overcoming Health Anxiety. Good luck.