And My Story

First off I've never had a full blown MI but I have had the typical pains on numerous occasions, good ones about 12 times, 3 or 4 being serious. My vascular system spasms and shuts off different organs, particularly my heart, luckily my spasms have released before too much damage has been done but my gallbladder bit the dust and was taken out.

It started about 10 years ago when my medium stamina started getting worse, well it was heading to nonexistence, my blood pressure was going into the 130's/90's and I was getting the odd chest ache - l was needing a good holiday :) then at 53 I told my doctor and I had a well man check up, well it was funded by a local hospital to estimate future needs. My pulse was 75 but my BP was 170/111 the nurse had a bit of a panic as the computer said better than 1 in 3 chance of having an heart attack soon! I did a two week record of BP and it averaged out at 142/93 and was started on 5mg amlodipine. About a month in and I had my first full event sweating, chest pain, back pain and neck ach, on today's standard quite mild but then frightening. 3 days later I was in cardio fast track and on a stress test walker, I had pain at 6min with BP increase but no ECG change, this is when I first encountered 'you don't fit in any drop down box on our computer?' And it wasn't going to be my last! I was put forward for an angiogram with the intention of stenting. No stenting required, I just had minor stenosis in a small artery. Sent home with aspirin, beta blocker and an increase in amlodopline to 10 mg.

Within 2 weeks I was swelling all over the place and at a follow up they noticed my raynauds kept flaring up, I was taken off beta blockers and amlodopline and put on ramapril. I was told I probably have cardiac syndrome X with raynauds but that I'd be treated as having blocked arteries although they were practically clear.

I now went through medication changes as the symptoms increased and about every 2 months ended up in hospital with suspected MI, 50% of the time the a & e doctors thought I'd had an heart attack with the others thinking other reasons, even being told to go home have a nice cup of tea and watch the TV. I went for a second opinion and even more tests, everything normal.

I have Small Vessel Disease/Ischemia and raynauds although they maybe the same thing. I'm now under Professor Peter Collins at the Royal Bromptom and Harefield hospital, a leading light in this poorly understood and little researched condition

It's estimated that there's about 27 females and 3 men in the UK with this, there may be more but not every doctor knows about it, through experience I recon only 50% of them have heard of this and out of them only about 5% have come across it and so believe it exists. I am hoping that some will read this and recognise some of these symptoms

Chest pain comes on at rest or during but mainly after exertion, palpitations, chronic Fategue, internal shudder like a tickle, hearing loss, sight distortion, like TIA symptoms, neck and shoulder pain, light events relieved by GTN, strong events need morphine or nitro infusion, you have clear arteries.

I'm unstable and everything's ongoing, next is a perfussion MRI but reacting to the drug is as important as the MRI itself? I've spoken in person with the BHF but they're only interested in stenting and bypasses, bit of a non entreaty for anything else.

My/our life as changed but not for the better and I'm unable to work and unable to claim any benefits including PIP but no one lets be fair gives a dam in authority. At the moment my MP as the case but I'm not hopeful, I'm asking the media for help next.

Have you had it different

2 Replies

  • How frustrating - I am sorry you are going through your ordeal, kel! I hope you find answers soon. I personally haven't heard about your experience before (I have heard of Raynaud's affecting fingers, but not much after that). Please keep us updated. Good luck! xx

  • Thanks but you've hit my problem square on - "what? Never heard of it" and why should you, but doctors should but unfortunately they seem uninterested in anything out side of 'blow it up, put a spring in or bypass it. The other thing is, it is different from what may be deemed as the norm heart symptoms and treatment, I can have 20 plus double GTN's a day (as need)

    This is why I'm pushing my condition but also that there are many other heart conditions than the std interventionalist

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