I wish I'd been told that my symptoms were all real and that dependent of whatever doctor you saw, you'd get different advice with regards medication. For example you should take this, you shouldn't take this. You'll be on this for the rest of your life, you shouldn't be taking this long-term. Etc, etc.
Also 'You are very young to have this condition' is often said to me. (I was 45 when first diagnosed).
What does this mean? Reading the forum lots of people much younger than me have it. So god only knows how they feel if they're constantly told they're young to be getting AF.
To stop telling people you're ok, when actually you are far from it!
This forum exists! It has relieved and explained my worries knowing that everyone understands.
Written by
millie-becca-187
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Yes you are so right. All I saw when I was first diagnosed was my local cardiologist. After 4 mo of telling him how bad I felt and him not listening, I finally got the courage up to ask for referral to an EP of my choice( not his buddy). EP immediately saw I wasn’t tolerating the medication cardiologist had me on and took me off it, taught me about life style changes, etc. Things 100% better now(3 yr later). The medical system is broken here in the US, not sure what it will take to make it more consistent.
Through Atrial Fibrillation Association we have spent the last ten years and more working away to improve knowledge of AF not just with patients but also with doctors and governments both here in UK and USA. The situation is improving slowly and do remember this is all relatiovely new science. Twenty years ago you would likely have been told to get used to it there is nothing we can do and you would be lucky of you were given anticoagulants for stroke prevention should you fall into the risk area.
Life stsyle plays big role in AF burden and more and more younger people are finding they have the condition,. Some are self inflected by alcohol, diet or over exercise but many just unlucky.
I wish I had a pound for everytime a medic has said nothing is wrong and I have then gone on for ages feeling dreadful and getting a diagnosis eventually ages afterward elsewhere and lo and behold I had been correct all along. We aren't fools even if sometimes sadly we are treat as such.
All I can suggest is we know our own bodies and if we feel things are wrong then they are wrong and we need to push for a proper diagnosis. Gone are the days when people thought doctors were always right. As we become better informed ourselves we must be quite difficult for medics to deal with as we won't be fobbed off and have the bravery to challenge. It's got to be done for our healths sake. If we find a good medic we need to hold onto them. Best wishes.
A lot of it is the power of the internet. Especially with adverse drug reactions. No longer is a patient alone in front of a doctor who says "Drug x/y/z does not do that". With a few clicks you can find umpteen people who have the same reaction you have. You can find the patient info leaflet issued in different countries and compare it ( the French info leaflets do not have all the adverse effect symptoms listed by the FDA profile). You can look up the latest research that doctors are not always aware of and you can read the clinical trial data ( at least that which the sponsor company releases and does not keep hidden in it's vaults!) for yourself and come to a conclusion as to the benefit of a drug that might be quite different to that of the doctor eg statins. You can become aware of raging controversies in the medical world. This can lead to discomfort for both patient and doctor but in the end is going to put an end to paternalistic attitudes held by the medical profession. Slowly yes and it still hasn't done much for the misogyny!
I agree, this is where the Internet can be of real benefit with the caveat of course of presenting said information to our medics rather than scaring ourselves to death and thinking ourselves into some condition we will not recover from. I imagine many doctors wish we wouldn't present them with ideas we have researched but the bottom line is we need to take our responsibly for our own health into our own hands alongside the medics assisting us. I have always thought of it as a partnership. However in my younger days it was a case of doctor knows best but I now look on it as a two way dialogue and will not pop a pill or agree to a procedure just because they had said so. Nothing like a good open minded medic to make the journey better and smarter.
I came across a humdinger of a medic earlier this week who talked down to me said my pain was in my head and I should not look for an outcome just accept it must be a chronic pain condition which would last for life and suggested I self help with talking therapies on line even though I had a full diagnosis from a world renowned neuro gastroenterologist with a treatment plan this doctor was meant to implement. You couldn't make it up. Now you can imagine I am following his claim, not. I am all for talking therapies as part of a larger plan but not when a diagnosis has been made requiring treatment.
Spot on, millie. There is a scientific bent in some medics - mine told me that he only believed what he could see. Fair enough, I bought a Kardia and showed him why I believed I was having frequent episodes of AF.
It’s sort of a rock and a hard place - I complained (moderately) for 6 or 7 years before diagnosis. All my tests came back normal - as they tend to with PAF but my descriptions of symptoms didn’t ring any warning bells anywhere. Most of the conflicting advice I’ve had is at consultant level where the consultant’s age and type of medical training may play a part.
I totally agree with you that some medics still see themselves as gods who are never wrong and don't actually listen to anything patients say! However I do think that things are changing. Maybe I've been fortunate but in Cardiff the EP always discussed treatment options with me and actively encouraged me to make informed decisions and choices about the management of my PAF.
I had major heart surgery last year and the care from the cardiothoracic surgeon and his team was first rate.
PAF is a very complex condition with multiple causes and is not always amenable to treatment and some of the medications can have very unpleasant side effects. This is not the clinicians fault. I'm not an NHS fanboy but I do think we have some Dr's doing excellent work in cardiology and cardiothoracics. I also have an excellent GP. I just feel that some patients have very unrealistic expectations and are very critical of clinicians. My comments aren't aimed at individuals on this excellent site
I was speaking more about the conflicting advise from GPs, as it's them you deal with after you have been discharged from the cardiologist/electrophysist etc.
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Anticoagulants and COQ10
