Here we go again - update - British Heart Fou...

British Heart Foundation

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Here we go again - update

Laurab101 profile image
4 Replies

Hi

It finally caught up with me and I am home again after ambulance trip no 5, A&E visit no 8 in 11 months. Saw quite a few faces from crews and previous visits - becoming quite a regular!

It all started 3 days ago with a heavy heart feeling & that left hand side pulling. GNT spray got used (I so dislike it that is a last resort)- more frequently as the days progressed + what I have termed 'The Godzilla Factor', that strange feeling of impending doom/unsettling panic with no reasonable cause. All came to a crisis point at work yesterday. I have a great job, sitting down, nothing stressful & around 11am I suddenly felt very unwell, faint & nauseous. My supervisor said I went a strange grey colour. They got my husband to collect me (my request) & thereafter a trip to the local hospital with chest pains. Heart rate is normally around the 70 BPM mark but wasn't getting above 52-55 yesterday.

Two blood tests later, chest x-ray & various meds plus a night on a trolley & thankfully no Troponin levels (first ever visit caused much excitement with a level of over 400). Back to waiting for CT & dye can.

Chest today is sore and tight but glad to be home. Getting more convinced this is going to be vasospasm related. Yet again within the 20th to 29th date range & occurs whether at rest or exercise.

I have been bookmarking posts regarding vasospasms to discuss with GP & related medics as we move forward, so thanks for posting. My final discussion with the duty doctor was that as my Troponin levels were not raised ' it's not heart related'. My issue with this comment is that it doesn't take into account the cyclical pattern, the none findings of previous tests,the persistent nature of symptoms and the spasms of my heart last time I had the dye added during a head scan (TIA) unfortunately looking at my head rather than my heart.

My last A&E visit in August left me adrift in a sea of self doubt. A discussion with the BHF nurse and info from this site helped me tremendously, but parting comments such as this today feeling vunerable and unsure of what to do next are not helpful. Thankfully my discharge letter is clear and advises continued caution whilst awaiting diagnosis. Let's hope for a minimum of repeat visits in the meantime. Apologies for the essay! Will keep you posted of progress.

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Laurab101
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Milkfairy profile image
MilkfairyHeart Star

Hello,

I am sorry to hear you have beenback to A&E.

Did you ask what your troponin blood levels were?

Anything above 5ng/L can indicate something heart related is going on.

I sometimes have slightly raised troponin blood levels or ECG changes when my coronary vasospasms are severe.

During my first angiogram, I had chest pain which I was told wasn't possible along with the doctor trying to say the ST elevations on my ECG were ' an artifact' as my coronary arteries are unblocked!

It took me a while to get my diagnosis acknowledged then further to have my diagnosis accepted. At times I thought I was going mad.

I have a legion of inappropriate undermining comments from staff who spoke not from a place of knowledge. I mentally put them in the bin.

My vasospastic angina was confirmed by an angiogram with acetylcholine which induced coronary vasospasms.

I now have a wonderfully supportive Cardiologist and we co produced my care plan. This helps the A&E staff and staff on Cardiology ward to care for me.

Nobody says ' it's not your heart' to me anymore. If they do I ask them to speak to my Cardiology Professor.

Keep the faith, your pain is real.

I suggest you ask for a referral to a Cardiologist who understands microvascular and vasospastic angina.



Laurab101 profile image
Laurab101 in reply to Milkfairy

Hi Milkfairy

Troponin was <2 (that's how it's written on my release sheet)

I was thinking of you and your experiences during it all. Your informed postings help so much. Thank you.

Harefieldfan profile image
Harefieldfan

wish you well!

LSCE profile image
LSCE

HI Laura, I can totally relate to your feelings. So sorry you are struggling to get a diagnosis and acknowledgement that this is heart related. I also have a history of undiagnosed chest pain. I have had 2 x NSTEMIs confirmed by elevated troponin levels, no significant coronary artery occlusion. I continued to get the excruciating severe radiating chest pain every day after my first heart attack (though it only lasted 5 - 10 minutes). When I sought advice from the rehab nurses on 2 days, I was told not every little pain is a heart attack. That I had a heightened awareness due to anxiety. After 5 days and escalating frequency I spoke to my GP and he sent me to A&E. Cardiologist told me we'll check troponin is normal and we can send you home. Troponin mildly elevated, sent home on additional meds. Further confirmed NSTEMI 5 months later. Several of the same episodes since then I didn't follow up on because of the feeling that I'm wasting peoples time . Cardiologist tells me it's nothing life threatening, nothing to worry about. All investigations to date have failed to identify a cause. Including microvascular studies. I too believe my problem is vasospasm. I'm told I am on the correct treatment. Fortunately, after tweaks to meds, I haven't had a severe HA type episode for 10 months. Anyway sorry about the essay but I wanted to say that I understand because it is horrible feeling when health care professionals don't take you seriously. Makes you doubt yourself and for me feel quite low. Like Milkfairy said you think you are going mad. I get the impression that if your female of a certain age your thought neurotic. As we fit the expected profile of a heart patient. The cyclical pattern of you pain would surely indicate a hormonal trigger? sorry I don't know your age. Were you diagnosed MI with the elevated troponin of 400? What medication are you on other than GTN?

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