my story, still waiting diagnosis - British Heart Fou...

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my story, still waiting diagnosis

latmaz profile image
19 Replies

well up until 2 weeks ago I was fit (gym 3 times a week and Aqua Zumba/swimming), woman in my 50's with a very low risk of heart problems as measured by my Dr

come back from holiday, straight into A&E hardly able to breathe with chest pains. in the next 2/3 days i had 2 X-rays (with and without contrast), numerous blood tests, an ultrasound, loads of ECG's and an angiogram with/without contrast. other than a slightly high troponin(?) and some dodgy ECG's and possible changes to heart shape....... nothing. i am not complaining the hospital were amazing

i am now awaiting a cardiac MRI but this could be some weeks yet. til then i am in the dark. they say i possibly had a heart attack but cant be sure til MRI and also cant confirm any other diagnosis

i am on blood thinners, betablocker, aspirin and 2 tablets to lower my blood pressure (which incidentally isnt high averaging at 135/75ish)

so thats me, still waiting to find out what the hell is wrong with me. i cant do an awful lot cos of the breathing and i am SO not used to just sitting around... ugh

thanks for listening, any tips welcome

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latmaz
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19 Replies
jimmyq profile image
jimmyq

What about an allergic reaction to something? Your attack happened after you got home, didn't it? Allergy to British weather?

latmaz profile image
latmaz in reply to jimmyq

Lol it was colder where we were, in fact I thought it was the cold causing the breathlessness. It’s definitely something to do with my heart not working properly

skid112 profile image
skid112Heart Star

Hi Latmaz, welcome to the forum, sorry to hear about your issue.

If its heart then the meds you are on should ease the breathing issues, beta blocker slows your heart rate, aspirin thins the blood allowing it to get to the heart with ease. Probably clopidogrel, another thinner and something to ease what sounds like angina, the blood pressure tablets.

So good news, you are on the radar, may take a while to sort out next steps, the MRI, Troponin doesn't always indicate heart issues, possible but there may be other reasons, hence more tests.

If the meds havent had any effect, go see you gp, they can be adjusted, others may work better

take care

Mark

latmaz profile image
latmaz in reply to skid112

Thanks skid, I know I am on the radar it’s just so frustrating having to wait for a diagnosis and to be so immobile til I can. I know I shouldn’t complain really as hospital are being so thorough

stevejb1810 profile image
stevejb1810

I'm sure you will have done the research, but the reason they think you may have had a heart attack is because of the elevated troponin levels. I'm not clear why you say you are immobile - have you been told to do nothing or are you unable to do anything? The drugs should help you have a life - it may not be as active, but you shouldn't become a couch potato either. There has to be a balance somewhere in this - talk to you GP

Steve

latmaz profile image
latmaz in reply to stevejb1810

yes thats why but as the levels werent raised by much they arent really sure tho they do know there is some changes in my heart and its performance

i am not immobile as such but compared to my 3/4 times a week I feel like it. i was expressly told NOT to go to the gym or over exert myself til we have the diagnosis. once we have that hopefully I can find some balance as you say but for now it is what it is and very frustrating for someone that used to be out every day <sigh>

Milkfairy profile image
MilkfairyHeart Star

Hi Latmaz,

I am sorry to hear you are in the limbo of waiting for the answer of what caused your chest pain and raised troponin.

I went through the same process 6 years ago. I wasn't allowed to go home until the results of my MRI scan meaning a 10 day stay in hospital. The wait was the worst part.

It is good that the hospital are taking it seriously.

It is possible to have a temporary narrowing of your heart blood vessels that causes chest pain and breathlessness etc. This condition Coronary artery spasms or vasospastic angina was the condition I was diagnosed with. It is treated with drugs to stop the spasms such as calcium blockers and I am on many of the other drugs you have been prescribed except beta blockers as these make my spasms worse.

I swim and go to the gym and when I can't exercise or go out like in the recent cold weather I paint and draw.

I also manage my stress through yoga and meditation.

The BHF link belows gives some further links about Coronary artery spasms and Microvascular angina.

I hope it helps.

Good Luck!

I hope you get the answers and treatment soon.

bhf.org.uk/heart-health/con...

I

IanGordon profile image
IanGordon

My Troponin levels were raised by a period of 130 bpm heart rate, not a heart attack. As you say it's about a new balance and adjusting to what feels like an unwelcome intrusion into your exercise routine and lifestyle. My declining exercise capacity was not immediate but over the last 3 months has moved me towards valve surgery. I can empathise with your frustration regarding inability to exercise and the wait for diagnosis and a fix but this is part of the landscape. The beta blockers may well slow you down to protect your heart. Use this forum for shared experience and support. And whilst you may feel you've been singled out for some heart grief - you are not alone. Whatever the outcome you will adjust and adapt and find a level of activity that suits your physiology . Good luck with the cardiac MRI.

latmaz profile image
latmaz

Thankyou both for your comments. I also have fibromyalgia so have had to adjust before just frustrated I have to do it again I suppose

I shall report back when I know more and continue to read the forum for more info

Ansteynomad profile image
Ansteynomad

You're kind of where I am. I have ten days to wait before my hospital appointment and in the meantime I'm not sure what to do. I don't feel able to go too far from home because I have been told that if I have another 'episode' I will need to call an ambulance and I don't want to end up in hospital a long way from home. I guess we both just need to be patient.

latmaz profile image
latmaz in reply to Ansteynomad

Ansteynomad pleased you at least have your appointment so have a time scale now. Patience isn’t my best thing don’t know about you.

Fingers crossed your appt goes well

Ansteynomad profile image
Ansteynomad

I don’t do patience and I certainly don’t do inefficiency and I am currently being pushed to my limits.

latmaz profile image
latmaz in reply to Ansteynomad

me either!!! and after another night in A&E even less so!!!

lots of chest pain and a pulse which was regularly under 50 bpm which I assume is down to the medicines I am on, was sent home as no signs of a heart attack.

latmaz profile image
latmaz

Well after another 3 days in hospital I am on 3 x 800 mlg of anti inflammatory tablets as they think that’s the problem. Still waiting on MRI but they hope this might help

Numberone1 profile image
Numberone1

Why would not taking anti inflammatory be the problem? I’m interested bcos I have fibromyalgia type problems and had an attack like you about 3 years ago. At the time they never could work out what the problem was and since them I’ve been scared to take a/f as not good if heart problems.

latmaz profile image
latmaz in reply to Numberone1

I am on very high a/f in case is inflammation only reason they aren't good for me is I have a hiatus hernia but needs must.

Had MRI so awaiting results now

Numberone1 profile image
Numberone1 in reply to latmaz

After I had the attack like you, I kept getting the weird breathing episodes but it was seasonal too. Nobody believed it was allergy/asthma related but last year I was struggling when I went to Mykonos and coujd hardly leave my room because I couldn’t breath. It was very hot and very windy. I eventually got diagnosed with late onset asthma. I was also send for an echo cardio gram. I was found to have an abnormal valve, possibly born with it and it was severe. I will need the valve replaced and am under Kings ready to go on a waiting list. I wonder what your mri will show up. Since being treated for asthma I feel amazingly well now but I am also very grateful that this valve has shown up because I really had no idea. I have researched this and found that often people get to their 50s before it shows itself and for some people it doesn’t. I too woukd never have guessed. At the time of the first bresthing issue the gp also wanted to check I hadn’t had a silent heart attack. Apparently not. If you find you have something like me, it will be a total shock but be grateful you were found when it’s possible to do something about it. Keep me informed. I also wonder whether my initial episode was nithing to do with the heart and was in fact an allergy or fibro related problem but this just showed up at the same time. The fibromyalgia pain I get is horrendous some times but too scared to take a/f because of heart issues.

latmaz profile image
latmaz in reply to Numberone1

Interesting to hear number one. I did wonder whether fibromyalgia had an effect. Thanks for your story and I will comeback when I have my results

latmaz profile image
latmaz

well i finally got my results yesterday and my heart is completely normal, no signs of any heart attack, damage to muscle etc etc. they seem completely flummoxed by what caused this episode and are leaning towards some sort of infection tho I have no memory of any problems before it happened

this is all good news of course and now i am working on getting off all the tablets which are causing significant side effects

thanks everyone for their input and support

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