[Closed] Coping with heart issues

Not me , but I was on a Mark Warner holiday where one of the roadies had recntly had a Ti Stent put in
He was pretty blasé about it and was builing up miles and intensity after a few months off the bike. Ok, so we wasnt quick but he was what I would call steady , aged slightly older than you , maybe 52 / 54 not a tubber
The ride guides were more concerned than he was tbh
sorry but cant be any more help than that

You called!

Just had a new aortic root, aortic valve and septum repair on Monday. Then a pacemaker on Friday.

Been through a lot of your symptom for a long time and it is very hard indeed. When you have had an exercised-based lifestyle, it’s bloody hard I know.

My only advice is to follow the medics guidance for cardiac care and try and find something else you can do to lift your spirits.

I’m happy to talk - phone proabably easiest if possible as I am getting very tired, very easily.

PM me for my number.

Ooft Jamj! That sounds like a big job I hope you're recovering well, though if you only just had a pacemaker Friday I guess you're still in hospital? I'll drop you a PM, but don't be in a rush to get back, rest up.

Initially I thought I just had ectopics at rest, but the treadmill stress test ECG was pretty sobering, especially as the night before I'd been doing hard turbo intervals for much longer than the treadmill test and had no idea.

Been for a little family wander in the sun to take some photos, so that's lifted spirits a bit. When I posted I'd just tried to do a little ride around the village and had to come back after doing hardly anything as I felt terrible.

Yeah, I need to follow the cardiologist advice. It's just hard with the long NHS waiting time, issues with medication and trying to keep working and sane. I looked at being seen privately to get some faster answers, but we just can't afford that.

longdog, feel for you mate. i was in a similar situation to you.
while on a cycling holiday in 2010 my heart went into AF. not uncommon with sports people. but mine was stuck in permenant AF.
over the next 4 years i had various procedures to try and rectify the problem. non worked.
i was on beta blockers and warfarin the whole time. i was adamant that i would keep riding the whole time.
i rode a bit hard sometimes and ended up blacking out. i had 2 years riding on a ebike, which was ok, but not the same as proper riding.
is 2014 the cardiologist at LGI told me that there was no more they could do for me. i was devastated.
all the time i was ill i was reading a website from the states about AF. i read about a hybrid procedure the use over there.
i went to see a specialist in Sheffield. one of 2 in the whole country. he also told me i was stuck in AF. but he said he would perform a keyhole op to do something to take away my risk of a stoke. he went in keyhole but whilst doing the op, he saw what was causing my problem, so had to crack my chest open mid way through.
i had a hole in a valve which was never gonna be fixed by the AF specialist. he mended the valve and did a thing called a cox maze procedure to fix the AF.
i have been in good rhythm since august 2014.

so, you will get down and fed up, and it is a proper bastard mate. but most tunnels have a big shiney light at the end mate. just keep heading towards that light.

and jami1974, good on you mate, and good luck for the future.
you sound like you have had a good outcome after going through the ringer mate.
i

Cheers Ton, that's sounds proper grim too, but glad to hear you got somewhere eventually and hope your plans for this year work out.

I'm actually not generally aware of the heart issue (though I have also had a few short periods of tachycardia that were noticeable), its the meds that I'm struggling with physically with their side effects at the moment. I'm now on the sofa totally flaked out and aching after trying a pootley ride this morning and a slow wandering photographing 2km walk with family this afty.

I keep telling my self that its all fixable, even if it was as bad as needing a bypass, just doesn't feel it right now. Still 5 weeks until I even get a scan, never mind the results and a way forward, but that's better than 5 months in December.

Hopefully these betablockers will be clear of my system soon and the next heart rate reducing meds will agree with me better so I'm not so tired and achy.

I have probably not been as bad as any of you. I had a small heart attack on my way to work just before christmas three years ago. I litteraly parked my bike at work and walked to A&E. The next day I had five stents inserted and went home on christmas eve. I had a period of rehab ie walking only and was walking five miles within a week. I can ride as far as I like now and still go seakayaking. Last year I went to Orkney and did a three day camping seakayak expedition.
The thing that I can't do is high intesity effort as because of the various medications I take my heart rate doesn't do more than about 140ish BPM.

The problem is settling for what you can do but in the end you don't really have much option.

I hope things go well for you and you are soon better.
Keith

It’s fair to see we have all been through the mill a bit but are doing our best to make our way forward.

There have been a couple in touch who have been very helpful indeed and I m indebted. Ton’s persistence with similar issues has been inspirational.

Cheers Keith, that is somewhat reassuring. Hopefully once they've put it right and I'm on the right meds I'll be like you and be able to find what works.

BTW come to Shetland, much better sea kayaking than Orkney 😉

Dunno when mine went into AF, but the suspected TIA was the warning I needed, so now on the meds, but no way could I suffer an exercise ban. Couldn’t afford to drive to work for one thing! I can feel I haven’t got the stamina of 2-3 years ago, but not letting it stop me do the stuff I want to do.

Don't get too low LongDog, There may be light at the end of the tunnel...
I was diagnosed with Angina 12 years ago at the age of 43. I had half a dozen stents in a couple of years and a double bypass 10 years ago this july. I was on a hatful of meds including Beta blockers, Ace inhibitors, statins, aspirin, and a couple of others I can't remember. I'm now on nothing, eating reasonably carefully and feeling better than ever! I have retired so that undoubtedly helps with the stress levels.
Two years to the day after my bypass I found myself on my bike at the foot of the biggest climb round here, 700 ft from Thursley to Gibbet Hill. Despite being on Bisoprolol and Ramipril I thought I'd try it. It took me over two hours to do two and a half miles. It wasn't fun, so I decided to come off the drugs. I discussed it with my cardiologist and he agreed I should phase them out over a few months. He did take some persuading though...
There may be reasons why you need to continue with your meds, but it does seem to me that they are used as a safety blanket for the inert when a bit of vigorous exercise may actually be better!

Side effects? Mine were...

Statins, all of them ; muscle pain
Ace inhibitors, Ramipril ; Severe aggression
Beta blockers, Bisoprolol ; A resting heart rate of 24, Dizziness, Lethargy, Kidney Stones and Gout! The last two are not pleasant and the gout has been persistant. Now sorted thanks to a fondness for Yoga teachers...

Heart problems are not the end of the world. It's only a ****ing pump!
It's not going to stop me doing anything I want to do...

I'm on a slightly different part of the MI bench, as I was taken into A+E just over 10 years ago after being woke in the night with tremendous pain in my left shoulder and a tingling hand.

Won't go into the details as they are not relavent (although anybody is welcome to PM me for a long drawn out version of events ;o) ), but the outcome was that I had experienced an MI and would be on tablets from then on.

Pushed hard to get an angiogram and they found nothing in need of a stent - my MI was just the result of a virus apprently.

Anyway, I was started on Beta Blocker, Statin, Ace inhibitor and antiplatelet. Again, happy to share doses etc if needed.

The first few days out of hospital are frankly awful as they give you so much medication when in, it is akin to being a zombie. Slowly I built up to walking around a football field without wanting to lie down, an I'd say that 8 weeks after the hospital trip I was back on my bike doing very light exercise.

Tried 3 different statins and all of them made my legs feel dead and weak. Basically couldn't do anything so told the GP I would no longer take them. He wasn't happy but went with it and I've been off them for the last 9 years.

Everyday life is normal for me apart from not having the heart rate to sustain anything above 145bpm for more than a few seconds at a time. I know when I'm at 135 and can sit there for an hour or so but struggle to push any harder despite muscles and in particular lungs feeling they have a fair bit more to give.

I also think my general reactions and sharpness are dulled slightly by the medication. By this I mean ability to think on my feet instantly, although it could be age related as I am 48 as per a few of us here with ticker issues.

As said above, I'll happily open up and share more detailed information but, thought this is enough as a start to hopefully help a tad.

Thanks for those replies guys.

Yeh I was put in statins despite cholesterol being within normal. I couldn't handle the side effects so my GP was happy to leave me off them and focus on the beta blockers. It does seem a belt and braces approach and I do understand they have to be cautious, bit it seems very hit and miss with meds until hopefully you find something that doesn't mess you up, or does so less than others. I'm expecting my new meds to be ACE inhibitors, but we'll see.

Anyone managed weight OK on these heart rate/metabolism suppressants?

I don't want a life of heavy duty meds, but that may be the cost of having a life, be it one a little less active.

The current exercise ban is just sooo depressing, particularly as I wasn't too far from in the shape of my life prior. Now I'm an overweight out of breath middle aged grandad.

I’ve had a pacemaker since I was 38. 60 now hasn’t deterred me from exercise. I refused the beta blockers Tried one and felt awful. I exercise 20 plus hours a week, zwift, rowing etc. I never had a weight or cholesterol problem and was fit when I had the pacemaker put in. My experience was that they try to give you stuff that’s not strictly necessary. But I’d always advise taking your doctors advice not quackery from forums. Fitness with a heart problem isn’t the end of exercise. Weight problem is down to you. It’s what your eating not lack of exercise. Being overweight will make heart issues worse and delay your recovery. Start today on the road to recovery with a good diet and loose weight. No reason not to.

I hope I can give you another positive message by saying that I have been reviewing entries for Scottish ultra marathon races for years now and have seen in the health declarations, every cardiac condition, symptom and medication mentioned above. My runners are doing anything from 33 to 133 miles and none has exploded yet. In fact, I’d go further and say that I am happy to see runners who have had a thorough cardiac review at these races. These folks are probably at lower risk of having an incident than random folks off the street. You should have plenty more adventures and fun ahead of you.

Pawsy_bear, yeh the weight problem is down to me, but give me a break.
I had a knee replacement last July and then just as I was able to try getting exercising again I had an exercise ban with added betablockers (which you said you don't take). I need to sort out food for sure, both due to lack of activity and emotional eating, but having your HR hardly going above 80bpm and normally a lot lower with lethargy and inactivity due to the BBs is not irrelavant.
It's good to know how well you've done though depsite your heart issue.

Highlandman, good to hear! Yes, if nothing else I'll have had a full MOT by the end of this and as you say porbably at less risk than when it was all unknown.

Longdog, I had my first open heart surgery back in 1977 and have had a few more operations since, but am still out and about on my bike so there is hope for you yet.

Beta-blockers and Ace inhibitors can have heavy side effects and at times made me feel worse than the symptoms of the actual heart disease, hopefully if you can have an operation to get things fixed then you can come off the meds and get back to feeling normal. Until then, getting your meds changed might improve things. With some of them the side effects do wear off but it can take several months.

You might be interested in some of the info here: https://www.bhf.org.uk/informationsupport/support/health-and-emotional-support or here https://www.bhf.org.uk/informationsupport/support/health-and-emotional-support/counselling

Cardiologists tend to focus on the physical aspects of heart problems without addressing the pschological aspects which often occur alongside. Support organisations such as BHF are becoming increasingly aware of this.

Like jamj1974 I've had a new aortic root and aortic valve (mechanical) but had mine done 12 weeks ago. I'm 52 and am well on the way to full recovery. I'm being told to exercise as much as I can so I'm trying to get out and walk/hike as much as I can (not as easy now I'm back at work) and can manage about 4 to 5 miles of Lake District walking, so fairly steep hills. I also go to the heart rehabilitation gym twice a week for supervised workouts.

I did have to go through about a year of no exercise (not even on an ebike) and no heavy lifting so I know what you're going through. Before my operation I would get out of breath quickly, even on easy walks.

Try an ebike if you're allowed. I had one for about a year and with minimal/zero effort effort you can keep up with your mates and get out riding. I found it easier than walking. I just set it on turbo mode and span slowly to keep my heart rate as low as possible. Now I'm fixed I plan to switch back to regular bikes once my chest heals and my strength returns.

I used to ride off road with a chap who had a quadruple bypass when in his late sixties and was back out on his mountain bike within a few months. No doubt your heart problem is fixable and you'll be better than ever afterwards. You just have to keep your spirits up while you wait.

Your current symptoms sound a lot like angina.
I'm younger than you, 44 now but when I had my MI is was 41.
I had been getting angina symptoms prior to the incident and had been to GP who thought it could be acid reflux. It culminated in me collapsing whilst doing a 14 mile run and having to be resuscitated and then being air lifted to hospital where I had a stent fitted.
From starting to get the symptoms to the event was no more than 2 months and since then, touch wood I have been better than ever.
I still run, and I keep dropping my times so it's not a given that you will be restricted after any procedures. I'm on meds, and most likely will be for the rest of my life, but it is keeping me well and allowing me to run and cycle and all the other things you take for granted.
I would say, embrace it and hopefully get yourself fixed. Being positive is the best medicine though. Chin up, hope it all comes good for you...
Oh, in 7 weeks I'll be doing the London marathon (again), the last time was about 9 months after the above had happened and I managed 2:45:54.

I’d go further and say that I am happy to see runners who have had a thorough cardiac review at these races. These folks are probably at lower risk of having an incident than random folks off the street. You should have plenty more adventures and fun ahead of you.

Very much this.

I did have to go through about a year of no exercise (not even on an ebike) and no heavy lifting so I know what you’re going through. Before my operation I would get out of breath quickly, even on easy walks.

It’s bloody tough!

Longdog, I had my first open heart surgery back in 1977 and have had a few more operations since, but am still out and about on my bike so there is hope for you yet.

The voice of experience! Thank you so much for all your help, Natrix.

very uplifting reading fellas.
knowing so many have been through challenging heart problems. and come out the other side and back doing good proper exercise.

good stuff............ ;o)

Thanks guys and I'll check out those links.

I did wonder if my symptoms were angina so I've tried the GTN spray a couple of times (including after yesterdays abortive ride) but never felt it helped at all. Sitting or lying down to let my pulse drop seems to be the only this g that works, and my pulse isn't high by normal standards.

I'm considering the possibility of an e bike once I actually know what's what. I'm not supposed to be doing anything now so don't want to invest in one. I've already spent money on new forks that arrived just before my 'ban'.

Anyway thanks for the encouraging and informative responses.

Longdog, keep yer chin up and take the advice from the cardiologists.

Back in 2016 i was suffering with what i thought was heartburn that would sometimes lead to a dull ache in the back of my throat and in my right hand. Lots of ECG's that showed nothing sinister so the docs thought likely cause was heartburn. Didn't seem right to me so one more ECG, but this one at the hospital and taken whilst the heart was under stress (whilst running on a treadmill). This showed a very mild irregularity and i was told to use GTN spray next time i had an episode to see if it had any effect. Couple of days later i had another episode, took the GTN and the symptoms went almost immediately. Quick phone call to the docs and i was in for an angiogram the next day only to be told that my right artery was 95% blocked. Two days later is was fitted with a stent and a plethora of meds. After a year the meds were significantly reduced to now only being on statins, aspirin and Ramipril. I exercise now as hard as i have ever done and with the docs blessing. I don't drink, don't smoke and try to keep my weight in check and, touch wood, all seems fine.

Hope you get your issues sorted, I have an ectopic rythem and the cardiologist at the time 8 years ago maybe told me there was nothing that could be done and I was going to have to live with them. When they are really playing up at night goodness me they keep me awake, gets me so down sometimes. Fingers crossed you get sorted and can get back out and as previously mentioned there is some good help out there.

ebikegum, glad that all worked out for you. It's the waiting that's doing my head in. December I was told I needed a scan after mt treadmill test, I'd have happily had it the next day, though I'd have been scared stiff LOL!
CT coronary Scan and calcium scoring is mid April and then more waiting until I see the consultant for results, and I assume more wait until an intervention. At first I was told I'd get an angiogram and they'd do what ever was needed there and then ( like stenting), it's not panned out like that though 🙁

But, yeh chin up and do as I'm told in the meantime. I don't drink or smoke, but have been having a tendency to eat junk when down with it all.

Cheers Muppet, I think generally when they happen at rest there's not such a worry, but when they go dancing a jig when you're exercising thats the concern? They're still no fun at rest though, that's what first got me looked at, but I din't get teh thumping in the chest that so do, just an uncomfortable feeling in my throat and can sometimes hear the weird beats in my sleep.

A bit like ton I've had AF challenges for the last 4 years (i'm 48). With a family history of hypertrophic cardiomyopathy I've been very careful and have had numerous tests which say I'm clear. AF is what I do have and have had two ablations. I seem to be in normal sinus rhythm after my last one in May 18. I've developed an autoimmune condition which means I spontaneously form blood clots so am on both an anti-coagulant and beta-blocker (bisoprolol). I'm still training and it's only really hill climbing that is affected by the beta-blocker as my heart rate just can't match the exertion.

I've found that I get more ectopics now. Diet seems to be the most obvious connection so it's worth watching out for what you eat and how much. Caffeine and alcohol really seem to impact me as does too much food. Interestingly my resting heart rate got quite a bit faster post ablation and is in the 60s now where previously it was in the low 50s

To the other posts - I find that cardiologists want to only treat the physical symptoms, hence why originally I've been told to stop exercising. I've persuaded him of the importance of the psychological impacts of no exercise and he's relented quite a bit which I needed to hear!

I mentioned a book called 'The Haywire Heart' in a post last week. It's a good read and helped me a lot.

Good luck!

My cardiologist told me to absolutely continue exercising post stent. I know that's a bit different to you AF guys. He said the heart needs to be exercised as it's a muscle so keep doing what I'm doing. I'm at greater risk if I stop.
When I told him how I'd done at London in 2017 he was amazed and even said he had told his kids how he'd fixed me and made me better. He was really happy that his work was having such a positive impact.

I get ectopic beats occasionally, also made worse by exercise - strangely immediately after stopping exercise e.g. stopping to open a gate when I’m running I might get a few, but then generally ok when I’m back running.

Is this what happens to you? If so I wouldn’t worry too much, I’ve had it for years and I’m still here.

Cheers folks.

I do have maybe one coffee a day and then earl grey, so maybe its worth cutting totally out, though the pharmacist said I was fine at that level.

Yes, I've read the haywire heart and the blogs of a few cardiologists who are and work with athletes (emailed a couple too). Obviously their suggestions are to do as your cardiologist says, though there was an under tone of it might be a bit OTT with all the meds and no exercise and they're just used to dealing with unfit non-exercising folk. But, once cleared to do it exercise as much as you want as its the best thing.

Funnily enough was at a physical activity strategy meeting this afty where the topic came up re cardio rehab groups. I said I'm on a ban and the lady said which bloody GP told you not to exercise, I said my cardiologist, but I'm happy to do as you suggest lol! Getting hold of my cardiologist for discussion is very difficult, but rest assured when we meet after my scan I'll make the mist of seeing him face to face.

Ectopics during exercise... I don't actually feel mine when exercising, but from the treadmill ECG they are not just the odd one, there are loads of them and they get loads worse and more frequent the harder I work. Its really the only reason I'm trying to abide with the ban as I saw the trace so know what it was like.

Longdog. Your history sounds suspiciously like my case. You should persuade your cardiologist to undertake a Cardiac MRI scan on you. I had CT scan (agatscan score of zero) and normal ecg at rest. I also had ectopics and on exercise treadmill stress test, severe arrhythmia, non-sustained ventricular tachycardia on the stress test. Cardiologists were throwing any test available at me as they couldnt understand my case at all. The MRI scan revealed acute mycarditis. They even asked the mri scan lab if the report had a typo!! Cardiologists baffled, however I recalled a tick bite, fluey symptoms, stiff neck and memory issues. It was linked to Lyme disease which causes Lyme carditis. I had a blood test and got a positive test result (lucky as tests are like tossing a coin). Got treated with 3 weeks IV antibiotics and not had any issues for 2 years since. Do you live in an area with high deer population or high lyme risk area, (although lyme can be found all over UK). You might want to Google Matt Dawson Lyme. Best of luck in getting sorted, whatever the cause.

Hi Yellow Belly, that's interesting. There not really any ticks where I live right now (Shetland) and I've never knowingly had a tick back home in North York Moors or on my trips in Scotland, Norway and elsewhere. But my dogs used to get them back home, so I guess there's a chance for one I didn't notice?

I have a history of ME/CFS going back 10-14 years ago which has very similar symptoms tiredness and memory wise, but the heart issues are very similar even down to the unsustained SVT episodes. I guess the blood test wouldn't have been back then?

I'll look it up as it does sound remarkably similar and could explain the ME/CFS diagnosis back then (I lived back in N Yorks then too) and maybe try to persuade the GP to do the blood test anyway.

The ME/ CFS diagnosis is definitely ringing the Lyme alarm bell. As is the knee (major joint) problems. Bear in mind that the blood test is a bit suspect if you get one. Good luck.

Yeah, I've been looking at various info and about the tests, doesn't sound quite as straight forward as go to my remote island GP and ask for the test :/

I also have other random aches and wrist pain...

I'm in for a CT angiogram next week to see if they can get to the bottom of mine. I seem to have got on top of the blood pressure to a reasonable level, but continuing random dizziness, fatigue and chest pains which aren't much like angina or other heart related pain. Already had ecgs, stress test, x-rays, treadmill stress test and ultrasound.

In the last couple of weeks, I've been put on treatment for inner/middle ear vertigo type problems and it's made a huge difference, I feel like myself again. Blood test in the morning so they can decide whether the blood is worth pumping around in the first place. Hopefully I can put it all behind me in the next few weeks and stop stressing about it.

Hope everyone can get the answers they need, and find a fix.

Hope all goes well Midlifecrashes, report back yeh?
I thought I was getting an angiogram initially until my appointment arrived! CT coronary scan now. Though it gets a bit confusing with all the different ones!

Ill be keeping my fingers crossed for youmidlifecrashes. If it’s anything like mine, the injection of the contrast dye gives you a warm feeling all over. Weird but not unpleasant - a bit like instant immersion in a warm bath.

Slight change of subject but since my surgery my hands and feet have been like ice. I can’t get them warm - especially at night.

I'd assume that's what ever mewdication you're on? Betablockers and ACE inhibitors are a common one for that I think? Hot water bottle?

I don’t think so. I’m only on warfarin, codeine, furosemide and something to settle my stomach.

bit like instant immersion in a warm bath

I felt as if I'd wet myself in the paper pants that they'd given me to wear, thankfully I hadn't........

Well that's me in a&e after a weekend of what I was worried was angina. Bloods etc are fine with no ischaemic heart damage, but being admitted and put on calcium blockers or something and monitored over night.

See what comes of that eh?! I'd have to be sent south to Aberdeen for anything like an angiogram, just meds and monitoring here I think

Poor mate of mine has just passed away this weekend. The Saturday prior, he was out on his bike and 'felt very strange' when nearing the top of a climb. Managed to coast the mile or so home, but then things went downhill. Into hospital, checked over, heart attack. Stent fitted then released after the weekend. (Scheduled for another stent a few weeks later) Poor bloke has dropped dead this Saturday. I'd only messaged him in the week and he said he was OK.

Oh no, sorry to hear that sad news.

Makes me glad I did come in though. I had to drop back from a walk at work on Friday and return to my car, not felt well since.

Hang in there longdog, it's a long road with heart issues.
My wife has had troubles since I met her 19 years ago, had a valve replaced, wore out 2 defibs, until last july we got the call that they had a new heart waiting for her.
That was a truly surreal time.
But now, 8 months post transplant, she is fitter & stronger than she has ever been.
I know it's at the extreme end of the scale, we didn't really know how sick she was. The doctors were amazed she was still working 5 days a week.
I hope you never get to that stage, but it's been life changing for us.

Wow Kiwijohn, that must have been a lot of tough times! Glad its worked out well in the end though!

Hopefully seeing my consultant in a bit...

So, I got the results (copy of letter to consultant) of my ct cardiac angiogram back a the other week...

Calcium score of zero, no stenosis or or abnormalities in soft tissues or structures and a strap line that stays the results can reliably exclude cardiac arterial disease as a cause of my issue. Plumbing is clean as a whistle.

I'm still waiting to see my consultant for a follow after this, great news but wtf?!

I'd already stopped my 3rd medication just after the test (bisoprolol, then nevibolol, then diltiazem) due to side effects that were angina like, I did ask the consultant.

When I was in hospital a couple of days due to angina symptoms they told me they were not even considering it being an electrical problem, just CAD and to expect the possibility of stenting.

So I have no idea. I'll mention/query Lyme's carditis when I see him, but again I queried that in passing in hospital and it was brushed off as not likely.

Off the meds I'm feeling much better, but still getting some issue when tired and I've noticed a non-decaf coffee will make it worse (ordered on autopilot) Pretty sure its not stress, though obviously this whole carry on and med induced illness has been bloody stressful!

Anyway still alive, trying to do some more exercise and waiting to speak to my consultant....

So I have no idea. I’ll mention/query Lyme’s carditis when I see him, but again I queried that in passing in hospital and it was brushed off as not likely.

Be aware that there is plenty of denial by doctors and consultants and a complete lack of knowledge regarding Lyme disease in the NHS. 'Not likely' simply sounds like a dismissive opinion.

Hope you get sorted.

Cheers(y)

As you can imagine I'm not exactly filled with confidence with my experience so far with my consultant :/ Though having CAD ruled out is a massive relief!

Longdog. re-read my posts above in this thread. Agatscan calcium score of zero here too. Given that cardiologists do not currently fully understand your problem, further assessment is required. You have to push for a cardiac MRI scan. Worth me mentioning that 3 weeks of intravenous ceftriaxone antibiotics sorted me out. Good luck.

Cheers yellowbelly, I will when I get to see him. Like I said I did query it on passing a short while back, but they had their CAD blinkers well and truly on at that point. I've been reading up about Lyme carditis today again.

This may be worth a read, some Lyme patients with carditis have spoken highly of this doctor who does have an interest in this.

https://drsanjayguptacardiologist.com/

https://drsanjayguptacardiologist.com/patient-stories/cs-story-of-living-with-lyme-carditis/?fbclid=IwAR1MIXeioqrt_nyoCEJDho6FprE5ytYDDXlkKwWQeMwkbBOwj0txNDLAVdY

That’s an interesting development and the fact your arteries are clear sounds like a positive.

Keep us posted.

Yeh Cinnamon girl I've seen some of his videos and he seems like a great consultant to have. Not seen that though, makes fairly grim reading!

Jamj, cheers, hope you're coming along well with your recovery.

I'm getting referred for an MRI scan of heart now to assess heart muscle and rule out any structural disease now that could be causing arrhythmia. His ears must have been burning 😉

Maybe I shouldn't go too daft on the bike yet :/

Are you allowed to exercise again? If so then that seems like step forward (don't overdo it). Hopefully your MRI will shed some light on your problem or at least rule out more serious issues.

ERM...I've not been told I can... I sort of assumed as I didn't have CAD from the CT scans I could do some as I wasn't going to blow something up, but now I'm not so sure...

I am still getting ectopics though and feeling a weirdness/pressure in my neck when I get them.

Communication with my consultant isn't easy/great. I guess officially though I be told to embrace the sofa until this MRI has been done. And tbh it's probably the sensible thing 🙁

Hope everyone is chugging along well, there's been some tough stories on this thread.

Just had a letter this afternoom:

"This gentleman's CT angiogram shows a calcium score of 0 with a minimal degree of plaque in the LAD and the right coronary artery, but no obvious evidence of any coronary disease. There was evidence of atelectasis/consolidation at the right lung which had a bening appearance. Thus, his chest pain is non-cardiac and I have discharged him from the cardiology clinic."

It's lies from the start I tell thee, I'm no gentleman. 😉 Keep buggering on.

Yeah mine referred to this gentleman too, whoever he is.

Sounds a bit like me. Good news, but not quite great or an answer.

I'm hoping to get home (been away the week) and have an appointment for the MRI, but it could be months yet by past experience!

My CT wait wasn't too bad but I had to get a different date because of a clash, so a bit longer in the end. It's put my mind at ease quite a bit, after a bit of frantic googling of "atelectasis/consolidation" which I'll try not get too angsty about. Hope a prompt MRI gets to the bottom of it for you.

UPDATE

Just back from the cardiologist after my cardiac MRI in January and I've now been diagnosed with microvascular heart disease as the cause of the ectopics and chest and neck discomfort.

I've got to take the small asprin and low dose of atorvastatin and verapamil to hopefully dilate the capilaries and so control/reduce the ectopics and chest and neck discomfort.

Good news is I can exercise un-restricted as long as I don't feel dizzy or get palpitations when doing it.

Check up in 3 months to see how I'm tolerating the statins and calcium channel blockers and if they are easing the symptoms.

Better get training then!

Good news that it can be controlled, you must be relieved !

very good news mate. take up touring. nice routes, nice pubs, nice and easy

Cheers, yeh it's good to know what's what for sure. I need to embrace the glass half full attitude.

Hope was for the turra coo 300km audax this year in May, but that may be expecting a bit too much lol!

Certainly a touring
/ bikepacking trip or two