Feel like a fraud!

[DeepFriedMarsBar]

I've been restoring an old cottage and enjoying the process. About 18 months ago I noticed I was getting tired more and more easily, then I started getting minor chest-pains during some of the more physical activities such as carrying heavy materials etc. They were always minor. They always passed quickly.

I kept thinking to myself that they would either go-away or come to something, but they just continued - minor pains in the chest. Ocasionally they were not-so-minor but passed within a minute or so.

However I was getting more and more tired, more quickly. After short periods of work it would feel like I'd ran a mile, full speed. I'd be out of breath.

Then last August I lifted a heavy-ish load into the car and got a massive thump in the chest - and I immediately felt totally wiped out, in fact I genuinely felt I was going to die right there. But the pain passed quickly (5 minutes) and I got my breath back. I still felt wiped out (a bit flu-like maybe?) so I just called it a day and went home.

It felt like if I just rested for a few hours I'd feel better, but my heart still felt like I was coming down from a long fast run. That feeling - heart racing, feeling wiped out - lasted a full week. I did not see a GP or go to a hospital.

I was now getting breathless at the drop of a hat, even just walking up stairs to bed had me out of breath. And I was now getting palpitations regulary and still getting ocasional minor chest pains. My heart was "thumping" but not actually fast. (Usually about 90 bpm at rest)

The thumping heart, palpitations and ocasional minor stabbing pains continued for a couple of weeks until my wife took me to see the GP.

The GP ordered blood tests, a breathing test and ECG.

The ECG suggested I'd had minor MI. And so the doctor referred me to the cradiology dept at local hospital.

To cut a long story... by the time I got an appointment (october) at Cardiology I was feeling lots better. They gace me another ECG (which was normal) and a treadmill test. Having seen the results of that, the cardiologist referred me for a CT Angiogram, put me on three meds: a Blood Thinner (clopidogrel), a statin and Zemtard (to lower blood pressure). Along with GTN tablets as needed.

By December 2019 I had not heard anything, but was still getting minor chest pains, and breathlessness. At the end of december I had another massive "thump" in my chest, with pain that radiated up to my jaw and down my left arm. It would not go away, but was minor, and was not relieved by the GTN tablets. However my wife took me to A&E. There they did another ECG ("inverted t-waves" whatever that means) and blood tests and kept me in for 2 days. It was Christmas eve so they chucked me out to go home, and put me on the "urgent" list for the CT Angiogram.

At the end of February I had an Echo, and the CT Angiogram, and a 72 Hour ECG Monitor.

Both the Echo and the CT-Angiogram were "normal" and so the cardiologist took me off the blood thinner and statin, but left me on Zemtard.

The results of the 72-hour ECG are not yet available, and due to the COVID-19 situation may be a long time in coming.

I still get lots of breathlessness, can't do much physical work without getting tired very quickly, and still get minor chest pains.

However because the Echo and CT-Angiogram were noth normal, I'm not sure what is going on, and feel a bit of a fraud for getting all these cardio related tests if there's nothing wrong with my heart!

The problem is I am no closer to knowing what's actually causing the breathlessness and pains.

[Milkfairy Heart Star]

Hi DeepFriedMarsBar

Welcome to the forum

The BHF has this information about angina. Most angina is caused by permanent blockages due to plaque.

A minority due to other causes.

I suggest if your chest pain and breathlessness continues ask your Cardiologist to consider the often overlooked non obstructive causes of angina

bhf.org.uk/informationsuppo...

[DeepFriedMarsBar in reply to Milkfairy]

Hi MilkFairy - thank you for your reply. I will mention that!

Thank you.

[DeepFriedMarsBar]

And also with you!

[Pollypuss]

Well I had chest pains for two years while playing tennis and always when I served, .The pain wore off after a few games. In all I had 6 ecg’s (not the active ones) and all came back negative. My blood pressure was fine and cholesterol and I was told for two years it was muscular. Like you I started getting more breathless and felt pain when resting. In the end I got fed up and asked the doctor which “muscle” was causing the pain. I was sent for an angiogram and they discovered I needed a triple by pass very soon. In your case your angiogram was ok - so is it muscular? Like costochondritis which has very similar pains like angina. 6 months on I feel much better (77 year old female) and waiting to go back to tennis

[DeepFriedMarsBar in reply to Pollypuss]

Thank you! Pollypuss that is very helpful. Hope you get back to the tennis soon!

[Changeling43]

That ideas sound very odd.

The symptoms and situations you describe sound very much like HA to me and I think you should get an urgent second opinion. Sometimes the angiogram does not easily show a blockage due to the angle of the camera. It’s never a waste of time.

[DeepFriedMarsBar in reply to Changeling43]

Thanks Changeling43 I will try to get another opinion. No chance of private for me!

[lilymeg]

I have costochondritis , brief pain and repetitive pain but no breathlessness. However, I do get breathlessness after 5 minutes activity ( eg having a shower) and have to rest for a while before I do more activity. I Have Atrial fibrillation (paroxysmal), tachycardia and syncope. Normally I go swimming 3 times a week and that extends my activity time before the breathlessness kicks in but with CO19 the pool is shut . I am on a pile of pills and I do use a scooter if I need to. Please don't give up on seeking an answer for your and your family's sake despite the frustration - stick with the tests and keep asking for an answer.

[DeepFriedMarsBar in reply to lilymeg]

Thanks you, lilymeg , I will.

[Pollypuss]

Yes I thought I had costochondritis because that was the only symptoms that correlated with my pain when I googled the symptoms!

[Hermanm]

Hi mate,

I had been diagnosed with high BP years ago by my long term family GP,

Was given BP medication for many years,

even though I didnt feel unwell ,

The medication did nothing to reduce my BP,

He then decided that I needed a different type of medication,

So he gave me a prescription, and off I went ,

got the tablets ,opened the packet, only to find the same tablets I'd been taking for years !

The incompetent Fu£×r had written out the wrong prescription.

That was it ,

I binned the tablets, and stopped medication altogether.

Probably saved my life!

About a year later,

I'd moved in with my long term partner,

I signed up with her GP,

They had me in for a check up,

Picked up the high BP,

Sent me for a check up, at my local hospital,

Cut a long story short ,

They'd discovered that I had a ,

" regurgitating Aortic valve "

, probably a birth defect,

I needed it replacing straight away,

It should have been picked up many years ago,

(I'm 62 now)

I didn't have any symptoms,

Apart from feeling a bit tired , and the odd palpitation,

which I put down to getting older ,and my job,

Landscape gardener.

What I'm saying is,

If you feel something isnt right,

Get as many opinions as it takes ,

Good luck.

[LavenderBee]

Similar tale for me. Came on all of a sudden pretty much 12 months ago - discomfort when exercising- which I did a lot of, swimming a mile a day, cycling to work and getting out running a couple of times at least each week. Went to the GP who diagnosed angina and sent me off with a GTN spray. Asked for a second opinion and the nurse practitioner who referred me to Rapid Access Chest Pain clinic. Also did an ECG there and then that was clear. Had a stress test which I couldn’t complete- doctors and staff were baffled. Sent me off saying I was really low risk of a HA as I’ve never smoked, cholesterol was low, not overweight etc. But to dial 999 if I had a bad episode. They also wanted to see me again once my slightly high BP came down with a very low dose of ramipril. Unfortunately there was an admin error at their end and a follow up appointment didn’t materialise. I had deteriorated by this point and exercise was impossible. At the end of August I decided to pay to see a consultant who thought I possibly had micro vascular angina which is not curable but can be managed. He suggested an angiogram- explaining I would not qualify for an NHS one as I tick too many “healthy” boxes. Paid for an angiogram and he was as shocked as I was to discover a 99% blockage in my mid LAD. Had a stent fitted there and then. Not cheap by any stretch of the imagination but I am thankful that I did do this as goodness knows what would have happened had I languished in the system. I would certainly have ended up being a bigger drain on it than if they’d permitted an earlier angiogram. Hope you’re able to get some better answers. Happy for you to share my experience with clinicians if they sit up and listen. My own consultant explained he has to make choices he dislikes all the time because he has to consider the cost of an angiogram for someone like me presenting as low risk. Just because you cannot see it doesn’t mean it’s not there. I had the stent fitted in September and am back running 10km regularly now. Hope this helps.

[DeepFriedMarsBar in reply to LavenderBee]

I'm glad to hear I'm not alone in getting clear results from tests, only to continue with the symptoms. I will continue to pursue this. I asked my GP if it could be pericarditis but they told me that would have shown up on the echo. Thanks LavenderBee and everyone - you are all so kind and Helpful.

I too fall into the "too many healthy boxes" category. 51 year old male, never drink or smoke, previously fit and active. Both parents still alive.... but my username is a nod to my location - west central scotland, the HA capital of europe!

[Trog1]

Hello, I had been diagnosed with ectopic heartbeats over 25 years ago and they continued thereon. I had been tested several times over several years and still was told it was nothing to worry about. In November 2018 I had to wear a monitor and at the hospital I was told there was nothing wrong with my heart and that I was still having ectopic which were nothing to worry about. However at the end of April 2019 I was ill in the night and had to contact 111. They took me in hospital by ambulance for a check over in case it was my heart even though they didn’t think it was - but they had to just check to be safe. I spent all day at hospital and all tests were normal. Then they decided to do a triponin blood test. I was stunned when it came back to say I had had an Nstemi heart attack and it had been caused by a genetic disorder that had gradually blocked my arteries. They kept me in hospital for two and a half weeks for an emergency CABG. It wasn’t my heart it was my arteries and that at 58 I had finally found a condition I had had since birth. It turned out that several family members who were considered to have poor lifestyle factors had actually passed away because of it and that my brother’s daughter also has it which actually proves that my brother who died suddenly (despite being previously told his heart was fine) must have had it to pass it directly her. I still find it difficult to believe the amount of tests I had saying nothing to worry about when my problem was hiding from the experts all the time.

[LavenderBee in reply to Trog1]

Gosh yes I didn’t add that to my information- turns out I’d done similar in attributing past relatives heart issues with poor lifestyles when actually I had inherited the same weakness. I’d been determined never to “end up” like so and so when all along the good diet and exercise was overridden by my genetic make up.

[Milkfairy Heart Star in reply to LavenderBee]

Highbury Hill

It's great to hear you are doing so well.

I am not sure though that I would agree with the comment about microvascular angina below.

' a consultant who thought I possibly had micro vascular angina which is not curable but can be managed. '

Microvascular angina or Vasosoastic angina are not trivial conditions to live with that can be ' managed'

For some patients living with MVA and or VSA , live with a form of untreatable ( refractory) angina accompanied by increased risks of cardiac events and repeated hospital admissions.

[LavenderBee in reply to Milkfairy]

They are the words the consultant used.

[Milkfairy Heart Star in reply to LavenderBee]

Yes and they showed their lack of understanding and knowledge of MVA and Vasospastic angina by making such a statement.

There are sadly very few Cardiologists with the specialist knowledge to treat MVA and vasospastic angina.

It is improving the younger Cardiologists are much more aware of the conditions.

The BHF website updated their information too few years ago. However there is lag of knowledge take up by all those involved.

[Trog1 in reply to LavenderBee]

It’s so easy for the drs to forget relatives when it is thought to be through their lifestyles. At one point my dr even considered gout and health anxiety (which I thought may be true because I’m a natural worrier and I’d not got anywhere despite tests).I was appalled by the gout suggestion as I don’t drink or smoke and because of diabetes with relatives have cut out processed sugar from my diet. My dr was good enough to keep checking so I had regular checks but the condition was still missed. Fortunately, due to strict testing procedure at hospital I still live to tell the tale as I when I asked if I really needed the triple bypass I was told if they hadn’t found it I probably had up to 2 years. I must point out that the NHS have been absolutely fabulous both in and out of hospital and rehab. Very best wishes and Stay safe.

[LavenderBee]

I will add my cardiac rehabilitation nurses were and still are amazingly helpful and supportive. I learned from them that people like myself and others with seemingly “good” lifestyles do end up not getting the care needed as the nhs has to prioritise those with poor lifestyles who end up really unwell when faced with heart issues. Rehabilitation is great if you can access it. I was fortunate to access a program where the instructor actually read your profile and tailored the sessions accordingly. I was gutted at first to be in an all male group but learned it was because my fitness level was good and she didn’t want me in a class with elderly unfit female patients as she thought it would be unhelpful to my recovery. She was brilliant. The reality is whatever the diagnosis we can all do better to address our lifestyles be it through diet, alcohol intake, and especially in my case stress. I never felt the need to use the word stressed but on reflection I always took too much on, always on the go, always trying to spin too many plates. If I didn’t go to bed exhausted and having ticked off everything on my list for the day then I’d feel I’d failed. I’ve had to relearn or actually learn to say no to people - that has been hard as I do not want to keep saying I cannot do things because I have a heart condition/ hypertension etc. But it’s coming slowly. I do hate the fact people , some, now see me as less able which is ridiculous because I must be in a better place than I was 12 months ago. Interestingly I’d sailed through the menopause with no problem- some clinicians see a link between the drop in oestrogen and females then presenting with a heart problem. Simply put oestrogen helps mask pain . Post menopause you have less oestrogen so possibly then “feel” pain that may have been there for some time.

[petef1]

DeepFriedMarsBar,

Things you mention ring an awful lot of bells with me too. Especially the thumps in the chest, the progressive breathlessness but then ecgs (x many) normal and troponin test negative. Heart slightly enlarged seen on xray but still waiting for echo. This was booked in January but cancelled due to this virus. So up and down at the minute but generally sore in chest and back on and off and breathless on occasions. Can't wait to get echo and hopefully stress ecgs to see whats going on as I'm struggling physically and mentally at the moment.

All the best to everyone else on this brilliant site and hope people are doing great.

Pete

[DeepFriedMarsBar in reply to petef1]

Hi petef1 I wish had words of wisdom for you. Things seem to move slowly at the best of times for chronic conditions. Now we are in a brave new world who knows how long tests and results are going to take!

[petef1]

Quite so DeepFriedMarsBar, very slowly at times, through sheer volume I guess. Although I also have autoimmune hepatitis and the hepatology team are on my current disease flare, although guess that's just bloods and tablets. But have noticed quite a differential in areas of healthcare. But the NHS lads and lasses are doing amazing in the current climate and fully appreciate a lot of cardiology is directed towards the virus. Yes, just have to sit it out and hope everything remains intact and operational within me, until we can all get tests and sorted. All the best mate.

Pete

[petef1]

Hi DeepFriedMarsBar. Have you had any further success in finding out the root cause of your chest pain and breathlessness? Hope you are keeping well. Pete