I'm convinced I have an undiagnosed heart problem

[Alwaysworrying25]

Just that really. I'm convinced I have an undiagnosed heart condition and I'm a ticking time bomb, but the doctors don't listen to me. I've had periods for years, of heart palpitations, chest pains at rest and with exercise, breathlessness, light headedness, random episodes of racing heart to the point I feel unable breathe or move properly, which do actually fuel my anxiety. I've been to th GP many times, I've been to A & E many times. Every time they say my heart is fine but how do they know that? I had a 24 hrs holter monitor about 2 years ago, which found ectopic beats, they said every other beat was an extra bear but that this was normal and benign? But how do they know that? Without doing other tests?

I do have a history of OCD, and health anxiety and I think this is why the doctors say it's all in my head but it's really affecting my life. I'm sure something is seriously wrong and I truly feel like I'm a ticking time bomb and I'll drop dead at any moment. I'm so scared.

I looked at seeing a private cardiologist but I just couldn't no afford to do it. How can I make them listen to me and give me the neccesry tests to check my heart? I have a young son with special needs and I'm making myself sick that I'm not going to be here for him one day soon when this happens.

To add, I am overweight so I guess this does contribute to some of my symptoms and I'm working on losing weight.

Iv had all the blood tests, vitamin d, iron etc which all day sufficient. This is ongoing since my son was born so almost four years I've been having these symptoms.

Exactly, sleep apnea is independent of snoring even if many people have both. I have sleep apnea because of a problem with my jaw so nothing to do with snoring. If you did get a smartwatch, don't expect it to capture this (mine captures one episode per night on average, but the sleep study showed 40 per hour). I only wake up gasping once or twice a week but I'm stopping breathing every minute or two without consciously noticing it.
Sleep apnea has a huge impact on your heart.

I wonder if you have any hypermobility?
You say you have OCD.

There are more and more links being discovered between neurodiversity and ehlos danlos syndrome, which is linked to dysautomnia and POTS.

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The thing is, all the heart symptoms you’re describing are often physical symptoms of anxiety, a medical condition you do have, but you have refused medication for that condition.

The symptoms you describe are also symptoms of obesity and high blood pressure - again, two conditions you have been diagnosed with.

The doctors aren’t telling you that there is ‘nothing wrong with you’. They are telling you that there are three things wrong with you, and that these are the cause of your heart palpitations etc.

You have had multiple investigations over a number of years and you have repeatedly been proven not to have a heart condition. You do have high blood pressure, health anxiety and obesity, which all cause the symptoms you repeatedly present with.

You need medication and a mental health referral for your anxiety and you need support to lose weight. You don’t need a cardiologist.

Sounds more like panic attacks if you've had ECGs that have all been fine. I assume when you went to A&E you were having one of these events so the ECG would have picked it up if it was anything bad?

OP, they know because they are highly qualified, experienced professionals, who are using all the best technology. You know you have anxiety - you say so - so please don't waste your time and money (or doctors' time) in pursuing it any further. If you want to spend money, see a counsellor or psychologist.

My dd is going through similar, she had a GP appointment this week after a private check up picked up a fast resting heart rate and a increase in heart rate when she stands up, she also has high blood pressure. Dd is overweight but has lost weight over the past 6 months. Dd has hypermobility and Autism and the GP has suggested she may have POT’s but because she doesn’t pass out it’s unlikely she would get a diagnosis. GP said it’s likely linked to her hypermobility and over all health (her diet isn’t great). She’s now waiting for an ECG and more blood tests but I suspect not much will come of it.

Please try and improve your MH, try the meds on offer.its pointless using NHS time if you won’t actively take their advice. Your anxiety will impact on your child, I speak as someone who grew up with a parent with health anxiety.

@ReturnOfTheToad Can I ask more about your symptoms? I've just been referred to Cardiology for palpitations (mainly after big meal or alcohol), feeling like I can't get a satisfying breath, low bp (averaging around 110/68, it used to be 117/75), and lightheaded. The GP did mention they would check me for POTs too as my heart rate increases by more than 30bpm when standing from sitting.

@ofwineandcheese Did you also struggle with low BP as part of your symptoms?

I'm 42, all blood normal including ferritin, b12, thyroid etc. 02 sats normal. I'm fairly active, use Pelton 2 times a week and walking up stairs, hills etc don't make me feel more breathless. One of my main symptoms is I feel like a can't get a deep breath in but this isn't all the time.

Exactly. OP refuses to medicate the conditions she’s been diagnosed with - what else is the doctor supposed to do? They can hardly force her to take the tablets or lose the weight.

I think the other relevant point is that even if you were diagnosed with a heart condition then this most likely be treated with medication including most likely a beta blocker which the propranolol that you are not keen to take is. So I’m not sure really what you want to achieve from a diagnosis. I know this as I have a heart condition and am on multiple meds with side effects . I would focus on treating the anxiety and weigh issues first - presumably then if there is a third issue that will become clearer?

Don't listen to her GP. You don't need to faint for a POTS diagnosis, fainting is actually one of the less common symptoms. Ask for a cardiology referral, they should do a tilt table test and the results of that will determine any potential diagnosis. Waits are likely to be lengthy so do consider private is she's struggling with it. There's a lot that can be done to treat POTS but GPs are are not well clued up.

Yes, I am really trying with my weight and trying hard to eat less and move more. My issue has always been the quality of foods I'm eating, junk food, crap, takeaways etc.

Yes I went one night when I had constant palpitations for hours on end. The ECG didn't pick anything up at A and E but I could still feel the flutters in my chest.

It is a refusal of the meds, but I don't want to be like that. I don't want to be so fearful of taking them that it causes me more panic and anxiety. I can't explain it but it brings me sheer terror. I was recently diagnosed with gallstones and more recently fibromyalgia. I don't even take pain medications because it terrifies me I'll be the one in a billion people that would have a serious side effect.

I know deep down that they are most likely correct but you see all the time about doctors getting things wrong or fobbing people off. I do have a therapist.

I don't think I have hypermobility, I'm not trying to be ignorant but I don't have any flexibility or anything, I don't know much about it. I have diagnosed OCD yes, I've been told by my therapist that she believes I have a spectrum disorder and that alot of my mental health issues aren't actually mental issues but undiagnosed autism or ADHD or both. My son is autistic quite severely and things have become much worse for me with my mental health but I literally that down to the overwhelm and stress of having a neuro diverse child. I think POTS maybe something to look into. I just feel like this is not all anxiety or weight related.

@Alwaysworrying25 It might sound silly but don't rule out hypermobility just yet. I was really surprised when I was diagnosed, as I didn't think I was at all flexible (years of dancing and gymnastics suggested I had no flexibility!), but it turns out that when you're very hypermobile your muscles go into spasm to protect the joints. This results in muscle tightness and a lack of flexibility but it's the muscle preventing the joint moving, not the joint itself. Now I know more about it, I can recognise that there are many ways in which my hypermobility manifests, I just had no idea because I wasn't flexible in the expected way, e.g., I can't touch my toes, but it's because my hamstrings are overtight, whereas my hip joints are actually insanely hyper-lax.

If you have problems with muscle tightness, knots and/or pain, this could be a sign of hypermobility.

I was diagnosed with fibromyalgia die to widespread pain, all over my body. Mostly my hips, lower back, shoulders etc but alas I guess this is also caused by being overweight.

Who diagnosed fibro? Have you seen a rheumatologist? Fibromyalgia shouldn't be diagnosed until everything else has been ruled out including testing for a full rheum panel and scans etc. It sounds like your pain is part of whatever else is going on

Then what do you expect the NHS to do when you refuse to engage in the treatment you’ve been given?

@Alwaysworrying25 I agree with @Tempodrom . Fibromyalgia shouldn't be diagnosed until everything else has been excluded but in reality it's often used as a waste bin diagnosis. I'm not saying that it's not real (I have a fibromyalgia diagnosis myself) but doctors tend to just diagnose it without thorough investigations and it's very common for hEDS to be misdiagnosed as fibromyalgia and for POTS to be misdiagnosed as anxiety (it is course possible to have both or all of these too). In my case I was diagnosed with hEDS (correctly) but told I have anxiety and fibromyalgia (incorrectly) when I actually have POTS and ME/CFS. My life would look very different today if it hadn't taken an additional 10 years to get proper diagnoses.

I obviously can't diagnose you over the internet (and I'm not qualified regardless) but I really feel for you and how you've described your symptoms, along with other diagnoses, is setting off all sorts of alarm bells for me.

If you haven't already, I would suggest checking for POTS, then a cardiology referral for formal testing if it looks likely, and also check for hypermobility with a a subsequent rheumatology referral. Have a read up on hypermobile EDS and POTS, see if any of it sounds familiar.

Just to add, I have widespread pain, especially in the areas you mention, and I've never had a BMI higher than 20 in my life. My point here is that while carrying extra weight won't help, it might not be the primary cause. Is it possible that you've been fobbed off by doctors due to your weight? I hear of that happening a lot.

Long term cardiac patient here. The ectopics and palpitations are all very normal. You could ask for the holter for a week to see if there’s any sustained rapid heartbeat, but otherwise this is also normal. Especially with anxiety.

From my experience and that of others I’ve talked to along my journey, cardiac pain is much more generalised across your chest (if indeed you get chest pains and not some other random sensations elsewhere). The other thing is, it is unlikely that anything significant going on with your heart would a) go on for years without a serious event leading to a cardiac event and b) be missed on every test.

What you describe sounds like unstable angina. BUT unstable angina does not keep owing indefinitely without making you feel very unwell and leading to a serious event. So your symptoms sound much more anxiety and even perimenopause.

However, unless you get on top of your weight, you will find yourself in poorly heart world, and it’s not fun.