Hi all. I wanted to vent and speak to someone who understands.
My story goes like this. 39/yo make. Have had slight pericarditis on 2 occasions over the years.
I don’t drink or smoke
In Oct 2021 I had a CT angiogram which was normal as Drs were investigating breathlessness upon exertion. I also had an echo back then too and it was normal. These symptoms settled down and I lost some weight.
For the last 5-6 weeks I started to notice heart palpitations when lying down.
I managed to capture them on my watch and the Dr has said they’re ectopic and nothing to worry about.
The palpitations became more frequent and stronger. At times they’ve violently shook my upper body.
I then noticed my resting HR increased, and was between 75-100. (I understand this is normal range but for a youngish guy, it felt excessive)
Standing up would increase my HR to over 100 easily and the highest I’ve recorded it at with standing is 170.
At other times it drops at rest and goes into the mid 50s. It seems to jump up / down erratically.
I then got breathlessness at rest, initially more so lying down or turning over in bed. Now i also have a constant feeling of breathlessness and tight feeling in my chest. The breathlessness feels like I’m suffocating.
I then began to experience significant chest pain with minimal exertion like walking a short distance or climbing a single flight of stairs.
I get either central chest pain with a tightness which lasts for 30-40 mins.
The other type of pain I get is left sided chest pain which radiates down my arm and into the jaw and or into my left shoulder blade.
This chest pain now comes on at rest too or by simply standing up and taking a few steps.
I’m also extremely tired and could sleep all day if I could.
Tests:
I have had normal chest X-ray
Chest and abdomen CT in April - normal
Normal echo - which I arranged privately.
Multiple ECGs - Normal
Troponin negative. BNP under 9.
I would like to emphasise that the chest pain is a strong gripping feeling in the centre of my chest which can last for hours. It’s accompanied by breathlessness and pain going down my left arm that can last for hours.
I’ve been to the GP and even presented at A&E on 3 occasions with horrendous gripping pain and shortness of breath.
All I get is the same thing - There’s nothing wrong with your heart, it feels like none of them believe me because of the above mentioned tests.
I’ve paid a to see a private Cardiologist who has fitted a 14 day holter and wants to arrange a stress echo to re-review the arteries. He’s also trialling me on 5mg GTN patches which don’t help!
My fear is that while waiting for this echo I may have a heart attack as the pain is happening more frequently and lasting for hours. I’m also breathless at rest and am having palpitations with irregular heart beats. All of this is having a significant impact on my quality of life.
I’m not even sure if it is my coronary arteries as all the drs tell me that a clear CT Angiogram is good for 5 years.
In your experience - Can arteries block within 18 months?
In addition to the stress echo, does anyone know if a cardiac mri would help or did it help you?
Sorry for the rant, I just feel so frustrated and confused!
Thanks for any replies!!!
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Divisionagent
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I’m sorry to hear about your recent heart troubles.
The holter monitor test is a good way of picking up any abnormal heart rhythms. If you’re having an excess of ectopics, although mostly harmless, the doctor can treat you for this with medication.
In terms of your pain at rest, I experience chest pain which radiates down to the arms, upper back and sometimes my jaw on a daily basis. I have something called vasospastic angina and it mainly comes on at rest. In addition to this, my triggers seem to be emotional and mental stress, followed by the cold, and sometimes heavy movement or activity.
Nitrates are usually the first line of treatment for angina, and I can see your doctor has prescribed you with the patches. Below is information on angina from the BHF site.
It seems that you’ve been proactive in your care when it comes to your heart health as I can see you’ve also sought private help. An MRI can reveal if you have any defects of the heart, as well as other specific diseases that can be missed on a stress echo as they both look for slightly different things.
You might find it useful to make a note of any triggers which you have for your symptoms and present them to your cardiologist.
I noticed you mention breathlessness quite often. Has asthma ever been ruled out?
If you experience chest pain that is particularly concerning, please call 111 or 999.
It is frightening isn't it, especially at such a young age - sorry you're going through this.
Could the pericarditis have returned, or could it be myocarditis? A cMRI would pick up on any active inflammation, but there are blood tests that check for this too. It might also be worth chrcjing fir scarring as this can cause arrhythmia.
I had myocarditis last July and kept getting flare ups which I've since been advised could be recurrent pericarditis. My symptoms are often similar to what you're describing... although I don't think my heart rate jumps like yours, it can fluctuate depending on what I'm doing, but I'm on a high dose of beta blockers so that would keep the heart rate in check. In this particular event, I was prescribed a course of colchicine and while it hasn't eliminated the symptoms, it's been a drastic improvement.
Disclaimer to say this isn't a diagnosis, I just want to share my experience in case it's any help.
Initially on a cardiologist evaluation taking my symptoms, blood, echo, ecg results into account - confirmed with a clear CT and active inflammation on cMRI a few weeks later.
Sorry to hear your story, I too are having similar symptoms, had pains between my shoulder blades and under my arm pit, had ECG’s, chest x rays nothing shows, have been told it’s muscle pain, cannot understand how it comes and goes, I’m in hospital at the moment as I had a bad angina attack on Wednesday night, walking up a hill, over the last 3 weeks had chest pains to the left and right side of my chest, breathlessness walking short distances, I’m being transferred to Exeter for an Angiogram in the next few days to see if they can find the cause of the systems, feel lost at the minute as i sometimes feel they don’t believe me, I’m stressed that they might not find anything on the Angiogram and I go back full circle, sometimes it’s a shit world having heart failure.
Hi, sorry to hear you are having such a tough time. Is it possible you are suffering from pericarditis again? I’ve suffered with peri and effusions for 17 years and several times been told (as gave many other sufferers) all is well. MRI is the best way forward and if you can afford it pay for it.
We paid for mine and I finally got diagnosed correctly with peri and two effusions. I’d had years of various heart meds and a range of diagnoses before the correct one. All the wrongly prescribed meds have caused numerous issues with my liver and kidneys (confirmed in writing). Please push for an MRI.
hi, i am experiencing the same. went to cardiologist and they were not concerned. However, its is worrying as this is not getting better. hope you find a solution soon PG.
I am really sorry to hear that you are experiencing all of these symptoms/health issues. It feels terrible and is extremely scary!
I am going to throw out another thing that you might want to discuss with your doctor. This may fall within the category of “better safe than sorry.”
Since my HA in March 2022, I have experienced breathlessness. It is a horrible feeling, and, sometimes, I feel that it has to be more than just remains from the HA. Some days, it is not too bad, but other days, I struggle to breathe all day.
I have been diagnosed with anxiety disorder, and an attack of that can cause breathlessness and symptoms that can mimic HA symptoms. So, that adds confusion for me. But two weeks ago, I had a follow-up CT scan to check on a nodule at the top of my right lung. It had first been seen in a scan done when I had my HA. I discovered that the nodule had not changed during the past year, so the doctor said that it is nothing to worry about.
However, the report stated that I had stable cardiomegaly (enlarged heart) and an enlarged diameter pulmonary artery. My doctor now wants me to see a pulmonary specialist to be checked for pulmonary arterial hypertension, which can have many of the same symptoms of heart issues.
You might want to check with your doctor to rule out this possibility. You most likely do not have this disease, but since your heart tests seem to be clear, it might be worth checking out.
I wish you the best in sorting out what is causing all of your symptoms/medical issues. It is so difficult not knowing what is going on with your own body and health. Take care. 😊
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