Still "undiagnosed' and Drs are "no help"

Hello, I am at a total and complete loss. I have been having my symptoms going on 7 plus years. I have been through a plethora of tests only to be "symptom free" during the more invasive testing; Holter monitors to the point I know how to maintain and transmit data myself; ekgs to the point I know how to hook myself up alone; event monitors that only show elevated heart rate, not the "skips, misses, hiccups and such"... I'm new to the area and trying to get my " gp" to listen is ridiculous! I've had "attacks" that have put me flat on the floor, caused dizziness, shortness of breath to the verge of syncope while driving! I have no energy, hate the feeling of helplessness but like I said, the drs are no help... Any suggestions/advice?

I'm at wits end!!!

17 Replies

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  • Buy an AliveCor and capture the events yourself. If you configure properly it can be as little as 2 seconds to when you start recording. That way you can capture the events and present as evidence to an EP.

  • Some of the other home monitors on the market have a Holter mode, so they'll record continuously.

  • I struggled like you to get someone to identify my symptoms and it eventually took 4 years and about 5 goes at wearing a monitor before being diagnosed. How about the next time you have one you call the emergency services next time you have one so someone could actually witness what is happening?

    Sadly it's a case of do what I say, not what I did!

    Good luck.

  • Book a private consultation with an EP. He'll listen to all your problems properly and get you on the road to treatment. Cost is usually £200 and well worth it.

  • Dear Dawn,

    I know just how it feels when no-one will listen. You know your body and how it ticks (sorry for the pun). I had my symptoms (PAF) for 8 or more years and it was never captured during tests etc. In March last year after another appointment with cardiology, a doctor recommended a small recording device being implanted in my chest to 'catch' any episodes. I had this done and lo and behold, within weeks, cardiology were contacting me! The recording device picked up quite clearly that I have brady (slow heart rate) and tachy (fast heart rate) cardia. Within a few months, I had a pacemaker implanted to help the bradycardia. Unfortunately there is no cure for AF, only treatment. Since the pacemaker I now take Bisoprolol 5mg daily and Apixaban 5mg twice daily and also 100mg Fleccainide as a pill in the pocket if an episode of PAF occurs. Please go back to your GP and ask to be referred to the cardiology department of your local hospital and if necessary, ask for a second opinion. I do hope you can get some much needed help soon.

    With best wishes.

    Carol

  • It's unbelievable that no one seems to believe you. I must have been 'lucky' I was in AF the morning my GP gave me a ECG at my first appointment. The advice above seems sound, call 999 or get to A&E when having an event, see a EP privately and if you have AliveCor readings that support your AF he/she must surely take note.

    Take care

  • It's not unbelievable at all, I was told there was nothing wrong AFTER I had been diagnosed. When I gave them a letter and ECGs to prove it they were ignored.

  • I second buying an alivecor. You can capture these events when they happen. I love my alivecor, I send my ecgs off to the cardiologist whenever I have an episode.

  • I'll third buying an AliveCor (as I said above).

    I also suggest that you get referred to an EP (an Electrophysiologist- they started as cardiologists but have specialised in the electrics of the heart and veins).

    Just seeing someone privately may not get the diagnosis if your heart is not playing up at the time (unless like me you are in persistent AF).

  • I understand your frustration at trying to get a diagnosis. Even if you have full evidence of AF... this will not guarantee treatment? Once you are stabilised you are left to await the next crisis. This can continue for years -just the same?

    Usually the GP will not want to deal with this problem?

    When the Fast AF is uncontrolled, with chest discomfort and SOB- the only route is A and E... to try and reduce the HR . Usually you are admitted for observation and tests?

    You are then discharged to home or ambulatory clinic as an out -patient?

    No Doctor seems to want to take responsibility for your case?

    Eventually, they have to finally act rapidly.... because you have now presented as an emergency?

    I know there are many people who have to suffer unnecessarily...for long periods...because no decision can be made. Everyone knows what is wrong - but nobody will take charge and decide the corrective treatment?

    The Financial costs to the Ambulance service... Hospitals must me enormous?

    The cost to the patient.... How can you measure this?

    My point is.... It can take a very long time to get diagnosed.... it can take a very long time to get treated?

    CASH is the fast track?

  • I agree with Carol70 – it sounds like what you need is an ILR (implanted loop recorder) which will monitor your heart continuously for 2-3 years, automatically detect and record anything exciting and manually record (with a remote control) what your heart is doing when you have symptoms even if it's normal. The latest ones come with a bedside gadget that transmits all recordings to your doc or hospital so they can let you know straightaway even if there is an abnormal rhythm you don't notice (e.g. when you're asleep).

  • Even with a Implanted Loop Recorder... there are no way of speeding up the system -unless someone takes responsibility for your case? In my experience- it was mislaid paperwork ... I seem to have had about three different Files of notes?

  • This is why an Alivecor is so useful. Once you have captured palpitation on an ECG you can print it or email it to you GP/EP and get a firm diagnosis. Alternatively you can send it to Alivecor who will offer a diagnosis for a very small fee.

    Peter

  • I never had symptoms while being monitored. Calling 999 is the best was to get a proper 12 lead recording of your symptoms. I also kept a record of date, time, duration and HR for each episode of AF. Then ask to be referred to an EP. Be assertive and if that gets you nowhere then pay to see an EP.

  • don't no if this will help husband has had lots of problems since cardiac arrest having brady/tachy which we caught on the alive cor saw a consultant that accepts these reading but he was worried about some other arrhythmias that was going on so last week he implanted a loop recorder into his chest which sends the readings to the hospital these last for up to 3years so it could be the way for you

  • I was only diagnosed after taking my self to A&E during the early hours one morning. I had to, as with PAF, every time I wore any device, I was not getting the symptoms and after so much wasted time, I had to do something positive. Best thing I did!!

  • I know how you feel - I had ectopic beats for years and whenever I got tested they would not be there. Eventually though they got so bad though that I was in constant tri and bi gemini. They could not work out the cause and I was sent to a leading cardiologist who said my EF was 40% and I had myiopathy and that I need a pacemaker with a defibrillator. Fortunately another doctor convinced me that that was a extreme solution and that I was not there yet. However he could not help me. I went on a mission to find out what it could be and I basically self treated for a range of conditions including low magnesium, low potassium, vit B deficiency caused by a bodies ability to process vit b, i meditated, ate lots of salt, got tested for a range of viruses (i was very positive for epstein barr - so got that treated, went to a chiropractor for treatment to deal with the vagus nerve, and I went big time into an LCHF diet and one day they all went away, not sure which cure worked or even if it was psychological (i think you can work your self up something stupid with worry). All I can say is try not to worry, read and try a few things (or like me a lot of things) check your diet - maybe something is triggering a reaction. Good luck

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