A lot of misinformation and docs gaslighting doesn't help things...

[dani777]

I've suffered daily heart palpitations since 2019. They got bad out of the blue. Literally. There is a history of arrhythmia in my family, but my mom didnt have it nearly as bad as me. I first started feeling palpitations in my 20's, although they weren't frequent, so they didnt impact my life in any way, really. Until 2019. Now this is two years after I was diagnosed with ulcerative colitis, so i sometimes wonder if that, and the steroids i've had to take for it, and the weight gain from it, has anything to do with this. who knows.

I've lost nearly five years of my life as this has been so bad that I've been unable to do much of anything. I have these palps every day, off and on all day. Beta blockers reduce the severity, but they dont stop the palps.

And like many of you, I desperately tried everything I could to stop them. I cut out caffeine, alcohol, and I took magnesium tablets. Nothing helped. In fact, after taking a few potassium tablets, i became very unwell within half an hour with violent palps that would not stop, and had to call paramedics, who spotted the pack of potassium, and immediately told me that potassium could be very bad for the heart. Said they had been on other calls where someone had very bad palps after taking potassium. They told me not to take anymore. I threw it all out.

For five years, I have been through three cardiologists, all of whom have minimised and even dismissed my symptoms, and ignored just how badly it's all impacted my life. They've also tried to tell me that "everyone" suffers what I suffer, but I'm just being "sensitive" and too "preoccupied" with my heartbeats. In other words, i'm insane and it's all my fault. They told me to see therapy. So I did. And every support person I had, not ONE of them had ever heard of anyone having bad palps every single day, or having severe bouts of chest tightness that last hours, several times a week.

The mental health people kept saying to me "are you sure it's not your heart?????"

Docs have no idea what is causing my chest tightness, but it doesnt respond to GTN spray, nor does it respond to most pain relief, nor does it respond to benzos. Tramadol, something i was only prescribed a few months ago after begging a doctor for help, telling him i couldnt take it anymore, has helped a bit.

CT scan last winter showed i have a 24% blockage, and "mild" heart disease, with atherosclerosis and high cholesterol, which also runs in my family. great genes.

My ECGs are always abnormal. Docs always tell me they're normal, even though the print out always says "abnormal." They've also told me that ECGs aren't accurate.

I've had paramedics assess me, and tell me they think there's something going on with my heart. And they've been concerned enough to tell me i need to go to hospital. I tell them "but docs will just write me off as an anxiety case." So they bring me to A and E, they speak to the docs, they leave, then the docs tell me i'm fine and discharge me.

I also have a history of anxiety, and PTSD, and so I feel I've been pigeonholed by doctors for these past five years. It's like they dont look at things because they just write it all off because of my history of anxiety. Soon as they see "anxiety" in my notes, they go blind.

Here are my symptoms that i suffer almost daily. Does this sound like "anxiety" to you?

1. Heart palps which usually feel like flutters or skipped beats, every day, off and on, all day

2. Chest tightness which can be severe and last hours

3. Shortness of breath and excessive sweating, hoarseness, some wheezing at times

4. Bouts of bradycardia

5. Feeling as if my heart weighs a ton, weird feeling in my chest

6. Feeling lightheaded

7. Feeling exhausted

8. Heart rate skyrockets if i climb my stairs, even slowly

9. Struggling with light exercise. Difficult to do, often get palps halfway through, and afterwards, I often have a delayed reaction of bad palpitations that last the rest of the day and sometimes the next day. it's as if the light exertion triggers a really bad pattern of palps that start up within an hour or two after doing the exercise

10. Struggling with light exertion of any kind, which will also trigger a delayed reaction of bad palps (even carrying a 12 pack of water bottles to my car can trigger this bad bout of palps)

11. Inability to handle inclines even for a few minutes. Get totally out of breath and excessive sweating. Chest can feel tight as well.

Now, even with all of the above, doctors have written it all off and told me I'm good, the palps are benign and "rare" (eg they rarely happen when i get them every effing day), and that it's just my "perception" that i have these palps.

Because of their attitude, I was only given a beta blocker, nothing else, for four and a half years.

And again, I've lost that part of my life because of it. The symptoms have been so debilitating that I've not been able to function. I've lived like a 90 year old.

Only recently have I been given other meds by a few new docs who have taken me more seriously, and who have also questioned why the other cardiologists have done very little

If you had cancer, and you were neglected like this, and told it was all in your head, how would you feel. Well, that wouldn't happen. So why does it happen with us?

Loads of people in the world have anxiety. But don't tell me that all those people suffer palps every single day. They don't. If they did, the world would stop.

I sometimes wonder, could these cardiologists keep doing their job if they had what i had? i wish they could be me for a year. seriously.

[mjames1]

Sorry about what's going on. Sometimes there is no one single thing or diagnosis that accounts for how we feel. That may be in part why the heart doctor says it's in your head and the head doc says maybe it's your heart

They both may be a little right as stress and anxiety in the mind affect the body and problems with the body can affect the mind.

What happens -- and it happens to so many of us -- is that we begin to subscribe every symptom we have to certain categories, when in fact it might even be something else.

For example, a number of the things you mention such as shortness of breath and hoarseness are consistent with LPR/GERD. Which can be caused by multiple factors, including stress from your palps. I'm not saying that's what you have, but just giving you one example.

I don't think anyone can tell you to ignore or not to ignore the palps, but in most cases they are more of a nuisance than a real problem. Sort of like tinnitus. I have it pretty bad, but choose to ignore it. If I focus on it, then it has the power. If I ignore it, it doesn't.

If that doesn't work, they will sometimes ablate for ectopics, but you might have to see several ep's before you find one that will do it.

Blaming the doctors is easy -- I spent most of yesterday doing that -- but at the end of the day they don't have all the answers.

Hope you feel better soon.

Jim

[Cookie24 in reply to mjames1]

I have afib, atypical flutter, and tinnitus like you.

[Autumn_Leaves]

Your symptoms are very real. It’s possible that the flutters you describe are ectopic beats. Have you had a 24h ECG? If you are feeling ectopics (usually called PACs and PVCs) and a 24h ECG has confirmed this, ectopics are usually described as “benign”. They don’t feel that great and people do find them unsettling. I experience thousands of ectopics a day, just to put it into perspective.

I don’t know much about CVD but my understanding is that blockages aren’t treated until they are around 70-80% and you may never reach that in your lifetime. My understanding is that we all experience some degree of this as part of the ageing process and begins early in life, from about the second decade in life onwards. The best thing you can do is to carry on living a healthy lifestyle and this should stand you in good stead into your old age.

I don’t know if you have ever heard of POTS and orthostatic hypotension. It’s when your blood pressure drops when you are upright and your heart rate speeds up to compensate. This could be the cause of some of your problems. For people with POTS, their symptoms are real and debilitating, but it’s not life threatening and some people find it improves over time. If you are prone to low BP, adding some salt to your diet and keeping well hydrated can help. Some people find compression hosiery helpful for POTS too.

Stress makes everything worse, physically and emotionally, so all forms of stress reduction are good. It helps take your body out of fight or flight and into rest and repair. It’s a physiological shift with real physical benefits. (Easy for me to say, not so easy to do and that includes me!)

[Mickey16]

Hi dani777,

Have you ever been referred to, or seen an Electrophysicst? They look at different aspects of the heart to Cardiologists. They tend to be at our specialist heart hospitals rather than at our General Hospitals. It is just a thought and I hope this helps. The route to the heart hospitals is either through your GP by referral or if you have insurance or the funds, privately.

All good wishes that you get some answers and resolutions to what you are experiencing.

Mickey16

[Ppiman]

My advice is to buy a Wellue or similar 24-hour home ECG and run it. If it shows lots of palpitations, ask the doctor who told you you didn't have them what gives and whether they really don’t matter in terms of physical future heart health.

I am quite sure lots of people get palpitations throughout the day, as I do and a cardiologist I once saw had, too (i.e. PVC or PACs in runs or frequency). You are likely taking statins and eating healthily as you must help the atherosclerosis, but, again, I guess very many people have similar to you and live a long life with it.

Palpitations are, whatever you feel them to be, benign in the sense that they lead to nothing bad occurring like heart failure, a clot or a stroke. I have read that rare kinds might lead to heart weakening, but I am not sure.

I have had chest discomfort, and thought it might be some kind of angina and can relate to much of what you describe. And yet I feel having read your post that anxiety is playing too large a part in your feelings. It has in mine at times in the past, even recently, and will, no doubt, again, as that is me. How you solve this is, well - maybe there isn’t a solution. One thing has helped me: realising that I am many years into this and have got through it now to nearly 70. There's an excellent old book by an Australian doctor called Claire Weekes available, even if only second hand these days. Whether or not anxiety is the root of much of your worries, I can highly recommend you read it.

Steve

[Staffsgirl in reply to Ppiman]

I second that suggestion about Claire Weekes’ book. It’s very old fashioned, and some of the content irrelevant these days, but well worth seeking out. I reread it from time to time, and find it helps me keep my anxieties a little less dominant.

[Ppiman in reply to Staffsgirl]

Hi SG! Yes, it is a little out of date in places, but her understanding of anxiety, her compassion and her coping strategies are second to none. She’s written a book that builds character and positivity in ways I’ve not read elsewhere.

Steve

[rubina786]

So true, can empathise with you, have many docs in my family and kinda know how they think. Trouble is they are not trained to look for causes, just symptoms and treat with big pharma medication that has a host of sides affects which eventually make things worse. Was in a similar situation as yours few years ago, different ailments. No relief. Kept getting worse. Medical mistakes contributed too.

I took matters into my own hands (to a certain cautious degree), studied all my medication, supplements, food etc, learnt to be aware of what my body was telling me and am a lot better off on the RA and heart front with natural remedies.I have now been diagnosed with Bowel Cancer but because I discovered it is due to EMF/RA radiation, there is nothing NHS can do (am working on several ways to survive currently). They kept saying it was RA and I know it wasn't.

So with the health sagas and gas lighting there seems no alternative but to learn more to allow your body to heal itself, treat one ailment at a time. I had palpitation and a good soul suggested Rutin which did wonders, sometimes it can literally be just one vitamin deficiency or just a small change like stopping potassium as was in my case too. Its not an easy journey, medical "tests" give some indication but everyone is different. Whats normal BP for me might be totally wrong for someone else. I have learnt to control my BP, ankle foot swelling, heart rate,m an oxygen levels, anemia all without medication and very few supplements if any. Just breathing a certain way, eating certain foods, teas and natural stuff. Not every day is good but treatment for cancer from another country appears to be helping too. I take one day at a time prioritising what to concentrate on.

No stress, happy thoughts help and trust in our Creator. The heart sends more signals to the brain then the brain does! So try and keep your heart happy!

Pain: Is It All in the Brain or the Heart?

Dr. Armour, in 1991, discovered that the heart has its "little brain" or "intrinsic cardiac nervous system." This "heart brain" is composed of approximately 40,000 neurons that are alike neurons in the brain, meaning that the heart has its own nervous system!!!

pubmed.ncbi.nlm.nih.gov/317...

researchgate.net/publicatio...

Hope this helps!

Wishing you ease peace and a full recovery!

Lots of love

Rubina

[JOY2THEWORLD49]

Hi

Afraid we need to manage our own health.

I have had to change Drs twice.

Stick with Drs who listen and suggest meds which sound and are

real'.

I stood out because I had a stroke with AF. Not cardiversioned, just left with awful meds e.g. metoprolol.

I asked to be referred to Specialist and she changed med but still high H/R 156.

A locum new had had AF and suggested that I go to a private heart cardiologist.

He put me on CCB a calcium channel blocked. On 1/2 dose H/R fell 105 BPM! To 51.

We twinked it to 120mg.

How's this 124/69 and 60s H/R Day. 47avge Night.

Diltiaem 120mg AM and Bisoprolol 2.5mg PM.

Also thyroidectomy for Papilliary Thyroid Cancer - removed. 3 x yearly scans CLEAR.

I had the H/Specialist public blaming the thyroidectomy - surgeon and I keep TSH at 1.0-2.0.

Hoilestically we should all be assessed carefully. Because he/she may be wrong.

Keep a check on everything and say No if you want to.

My journey took me to say NO to RAI Radio Active Iodine and Suppression of my TSH. What is a 'given' process for some is always ?ed by me and I will make a decision.

cheri JOY. 74. (NZ)