Over the past four weeks have had symptoms of angina (apart from nausea and vomiting) which is getting progressively worse. Basically my life has come to a standstill because I feel so unwell. Can't even take my energetic dog out anymore......throwing stick or ball totally exhausts me, go very weak and can barely walk. Also feels like my heart is being squeezed, tightness in chest, breathlessness....pain in shoulders neck and sometimes jaw. Even feel so unwell when I wake in the morning and struggle to get through the day....! Most of the time I just sit around to alleviate any pressure or stress on my heart. My heart and body symptoms dictate my every move. Also I self medicate with 300mg of aspirin to help symptoms and give me some peace of mind.
Strange as it may sound I only realised this morning that I could have angina because my twin has this heart condition. So I looked up symptoms of angina and it was a light bulb moment. In my ignorance I always thought that angina was a minor heart condition.....!!!
Three years ago GP told me after ECG in surgery, I had suffered a silent heart attack. That was it, no follow up investigation....no advice nothing. Past year two visits to A+E in middle of night after being woken up by heart beating so fast I thought it was going to literally explode.....every instinct told me not to move...lay immobilized for over an hour eventually brakes slammed on, abrupt stop from excessive speed to standstill...no gradual slowdown. Felt relieved but so ill....went A+E.....something was not right. Had ECG and blood tests they found nothing wrong!!!! A+E failed to send any info to GP after my two visits to them.
More to the story but finally reached a point whereby i realised NHS was failing me and many others due to the crisis it is in.
So boring story cut short, got appointment 17 Dec with a private cardiologist. Had to get a bank loan to fund this.
In the meantime I have most of the symptoms of angina as mentioned in top paragraph. They subside a little if I remain inactive but manifest more with activity. I know it may not be angina because I need to be diagnosed but I am moving toward this. Every night I hope to wake the next day feeling a bit like my normal energetic active self but I awake feeling ill. Question is at what point (prior to private consult with cardiologist), if any more symptoms arise should I go to A+E?
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Have you consulted your GP. Any condition that is so debilitating should be investigated as a matter of urgency. If it is angina and we can't possibly advise on that. There are medications that can be prescribed. If it is a sign your heart is struggling in other ways it needs investigating. Have you got an urgent care centre. You can ring111 and they will make appt. Sometimes they are next to A and E. If you are worried then A and E it is. Better safe than sorry.
Thanks Bagrat, yes you are so right, my heart is really struggling. Not sure if there is an urgent care centre in my area but will check this out. Went to see GP four weeks ago about thyroid report I wanted to discus with him and he reached a point whereby he referred me for holter monitor to fitted. At that time I was nowhere near as bad as I am now. To date still not heard anything from NHS about holster. Hence I opted for private cardiologist. Will give 111 a call and see what they suggest.
Isn't urgent care centres for people with pre-existing diagnosed health problem?
Thing is even though GP told me over three years ago that I had suffered a silent heart attack which showed up on ECG done in GP surgery her findings have not been recorded in my medical history. Hence, concerning heart I have not been diagnosed.....!
Just had a thought......So want to go see GP practice manager and get this issue investigated but too ill just yet.
Get 111 rung now. In October I thought I had a chest infection as I was getting tired walking and chest pain every other day. I did nothing until a friend got 111 rung and when the ambulance came and paramedics checked me I was having a heart attack. I’d been having a series of heart attacks for weeks! You need checking out now, don’t wait.
Hi! I just read your story and connected to it immediately, my heart goes out to you. I was born with congenital heart disease and have 5 anomalies that have been monitored throughout my life. I had heart surgery at 9 and then again at 24 for emergency open heart surgery. I had an aortic aneurysm rupture and blew apart my aortic valve. I was doing well for years after surgery until 2016 when I started noticing an increase in severe chest pain, extreme exhaustion, nausea, vomiting, intense sweating, increased blood pressure, lack of sleep due to extreme pain levels, and shortness of breath. Every task became a huge hurdle in the day. What I used to take for granted, like showering every morning, was becoming way too hard and demanding on my heart. I felt like I was having heart attacks daily that lasted hours. It took a month and a half of visiting my cardiologist on and off and trying different cardiac meds until I hit a wall and couldn’t even get through a morning without vomiting from the excruciating chest pain. I was hospitalized for almost a full month. 6 cardiologists worked with me, I was put through countless tests. Finally with an adenosine challenge during an MRI they were able to diagnose me with cardiac microvascular disease, or cardiac syndrome x. I had ischemia or lack or blood flow light up on 80% of my cardiac muscle. They repeated the test twice in disbelief as I have no underlying risk factors for this disease. I was 33 years old, active, ate a healthy diet, never smoked, none of it made sense. It wasn’t related to my congenital heart disease. It’s now 3 years later and the cardiologists were unsuccessful in relieving my daily chest pain episodes despite trialing every medication available ( I made the choice to refuse narcotics) . I am on high doses of calcium channel blockers to keep my blood pressure and heart rate under control but I still have daily ischemic episodes to the heart muscle. 80% of my microvessels are affected and do not expand and contract as they should, as my endothelial cells within them have died and or are spastic. My coronary arteries are completely clear, it’s my microvessels that branch off of the coronary arteries that carry the blood and oxygen right into the cardiac muscle itself that is the problem. Many women are overlooked for this disease as only an MRI with an adenosine challenge is able to clearly show the ischemia going on in the heart muscle. I had to continue advocating for myself to finally get a diagnosis. Because there is no “cure” for this disease I was forced to go onto long term disability at the age of 33. I was a registered nurse, it was devastating . I struggle with this disease daily and it has drastically affected my quality of life. However, as a registered nurse I know first hand things can always be worse. I try to appreciate what I do still have and the fact that I can live a life outside of hospital walls for the most part. I hope you get answers soon! I really recommend advocating for yourself as much as possible!
Wow Congenitalheart, what a story. It's very humbling for me. I have the same diagnosis. In my case the ischaemia showed up on a stress echo but it was assumed my coronary arteries were the problem. The angio showed they are pretty clear, so the diagnosis of microvascular angina. The humbling bit is that I don't get any chest pain and my condition is pretty much controlled with my medication. It's such a weird condition. Most people I've come across on this and other forums suffer very badly, so why do I get let off the hook? I do hope that the ongoing research into the condition comes up with some answers to treat the condition better.
Milkfairy said it so well, no one person is effected the same way by this disease, each person’s struggle is different and can’t be compared. I too hope they can continue moving forward with research in this area as so many people are suffering! It’s so great to have platforms such as this one to connect with others going through a similar situation!
Welcome from another person living with non obstructive coronary artery disease.
I also live with debilitating daily angina. I had to retire early from my much loved career. My recent PIP renewal award gave me enhanced for both sections for 10 years. The DWP is not known for their generosity.
My angiogram with acetylcholine showed I have vasospasms in my small and large blood vessels. Microvascular angina and coronary artery spasms .
I get my pain at rest and I am frequently woken at night. I also opted not to use morphine as it doesn't touch the sides with the pain .
I am on high doses of Calcium channel blockers , nitrates, nicorandil, statins and chlopidergrel.
I have had refractory angina for over 7 years.
Not having to work has helped but I have to manage my stress. I am also very tired. I need more sleep!
I use a TENS machine and oxygen and breathing and relaxation stratergies. Mindfulness meditation self hypnosis and CBT.
I still end up in hospital with unstable angina for a fix of IV GTN and morphine via a patient controlled analgesia system.
I have certainly advocated for myself I have written admission protocol which the Head of Cardiology approves. It was written by my Cardiologist, Pain Team and myself.
There is a growing awareness of the condition and more research happening.
Microvascular dysfunction and Vasospastic angina are the new frontier in cardiovascular research.
Are you aware of the drug trial into a possible new treatment for Microvascular angina that is set to start early next year.
Hi! It’s so great to hear from someone who completely understands what it’s like living with this disease. Thank you kindly for reaching out!
Unfortunately I was too high risk for a complete angiogram. The cardiologist who performed the angiogram wasn’t comfortable administering the acetylcholine as I already had the diagnosis of micovascular disease and my coronary arteries were already spasming on him. My congenital defects were what worried him the most and my risks where too high to fully complete the exam. The MRI proved to be enough clear evidence.m with all the ischemia they found.
Stress is a huge trigger for angina for myself as well. I have worked so hard these past 3 years to find peace. I went through a nasty divorce just after diagnosis. The past 3 years have been difficult to navigate to say the least. It’s hard for people to fully understand when it’s not a disability that they can physically see. I also find I tire easy even from conversation and find myself needing to lay down and rest a lot.
I too have coronary artery spasms and frequently wake up soaking wet in sweat from the intense angina and often vomit from the nausea.
I was trialed on all 5 categories of cardiac meds without and success. My cardiologist also tried a lot of meds newly being tested for NOCAD or microvascular disease( so many names for it), which also didn’t work for me unfortunately. Nitrates gave me wicked migraines and nausea and weren’t effective enough.
I also have a prolapse mitral valve that is moderately-severely leaky, a tricuspid valve that’s a bicuspid and leaks, as well as a unicuspid aortic valve with a patch that is starting to leak. I recently had a TEE where they discovered I have a partial tear in my aortic aneurysm patch. The aortic aneurysm has also started to enlarge again. I go for an MRI in the spring.
I am currently living in BC but have a team of cardiologists in Calgary ( I used to be an Alberta resident and kept my cardiologist out there for continuity of care).
I need to go to the hospital for out of control angina as well, however I most often stop myself for fear of being judged. I live in a small city where cardiac microvascular disease isn’t well understood. I typically end up there once a year in utter desperation for some relief and get IV dilaudid and gravol. It would be incredible to have an admission protol, knowing I had one would be a massive relief in itself. Every time I go into hospital I have to go over everything with them, my entire history and story, and almost convince the doctor that I need IV dilaudid, it’s humiliating because most don’t understand it yet, not here anyway.
I have yet to hear about any new drug trials being done in the New Year, hopefully it’s promising!
So interesting, it definitely sounds like we have so many similarities! I know my cardiologist here in Canada, who specialized in cardiac microvascular, often travels abroad to conferences, and is privy to most knew drug trials. Absolutely keep me posted if you don’t mind!
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Intro
CAD and OMT/STATINS
Pain under arm pit area following by pass surgery.
Progress post surgery 
