I've posted here before, but it's been awhile so I'll review my story. I spent a year or more, about 7 yrs. ago, having dizziness, palpations , fatigue the usual for afib patients. I kept asking my Dr. if it could be my heart and was told no, my heart is fine. I ended up with a diagnoses of anxiety. A week later I had to be cardioverted and eventually had an ablation. No problems for 5 years. Present time; for the last 6 months I've had feelings of passing out head rushes fatigue depression. Diagnoses anxiety, even though I'm an afib patient , different Doctors too. Last Sat. I had an attack that was very brutal. My hr was 248 , I really didn't know what was happening. In the ambulance while still in my drive way they gave me a shot that stopped my heart and then it started again and was in normal rhythm . Stayed over night in hospital and had many tests. This diagnoses was SVT and I'm having another ablation on Nov. 3 I'm not totally surprised by this , I'm not at all happy at having to go through this again, and I'm mostly disgusted at Doctors in general. If any of you have had af and svt I would appreciate hearing about your experience. To all of you , thank you for letting me vent. I do feel so alone. Pam
TRYING TO STAY CALM, BUT I'M REALLY A... - Atrial Fibrillati...
TRYING TO STAY CALM, BUT I'M REALLY ANGRY
Hi Pam. Sorry to hear about this. At least they are now treating you seriously and seem to have identified the problem and treatment. And it's great that they are getting you in for ablation so quickly. I have been told to expect to wait 6-9 months. You are not alone with this illness and your symptoms. Vent in this forum as much as you need!
Thank you. I had to wait 6 mo. the first ablation so I am very lucky this time . They have me on a list if anyone cancels I'll get in sooner. I really appreciate your reply.
Hi Pam , isn't this form brilliant for us to share are experience . I had exactly the same thing done to me , I am now 45 and my as we no now STV symptoms started in my early 20s . I have just turned 45 on 17th August. I had runs of SVT while dancing when I was in my early 20s would go to do a movement or get my heart up a bit and bang 💥 started with a few skips then race away then abruptly stop ! I always had them horrible ectopics but got told I had depression and PMT and an anxiety disorder!! Put on a low dose of beater blockers for years !! Anyway hit 35 and them symptoms became worse , but still got told I had bad anxiety, this has cost me quality of life as I became to frightened to get a job and just pondered at home , would look after my children and put everything into being a house wife . Then last November something changed!! My heart done it's usual fast pace with a skipping every other beat , then went into a 7 hour run of AFib as I found out in ANE . I was petrified, but what made this all eaven worse is my cardiologist after me begging her eventually put a implant loop recorder in my chest for 3 years that GET THIS ?? (DID NOT PICK UP ANY SVT ) or so the technical team told me my AFib attack. That was later a lie as it actually did pick it up as I demanded them to go back and check the reading again . Well I am now 3 days post ablation and I asked the EP will they look for SVT and he said no !! As you have AFib . But because he actually listened to me sob as I new there was something else more than SVT and I didn't want them to miss it he did look , and low and behold the SVT came out quickly before the AFib . I feel blessed as he done a cryoablation and something called a SPW ablation procedure for my SVT as apparently it was very close to my AV node. Thank god he got it and I haven't woke up with a pacemaker 🤞🏼💗🙏🏼 . I feel your anger as now I no I had SVT all along but only as I know 1 run of AFib last November ??
I think all the years of SVT have gave me AFIB!!! I could be wrong but it's a feeling I had , just like I new I had SVT !! So sorry for the long reply, but believe me when I say !! WE HAVE GOT A GOOD IDEA ABOUT ARE OWN BODYS !! Some doctors nowadays should be struck off by the NHS !! As this condition is past off way to easy as anxiety!! You vent all you want as I honestly don't blame you . I will be putting in another complaint about the loop recorder and the technical team at the crap hospital that didn't pic my SVT up . And now I have a severely dilated left atrium after the AFib attack last November . I am fewwwmin with it all and once I am better I will be taking action. I am so sorry about your experience Pam as I know 1st hand how horrible it makes you fee to be labelled as a anxious person . Here for you anytime Pam if you want to vent lovely 😊 💗
Best wishes
Sam xxx
Thank you Sam. I feel like the Doctors pick the most common diagnoses and look no farther. If you question them they get quite nasty. I told my Doctor about something I read on Google and he said maybe you would like Google for your Doctor. It shut me right up., however, I am looking for a new one..
Pam I have been all over the country as my husband was in the RAF and seen many doctors over the years , the only one lady at Stafford said she thought I had an SVT !!! But went no further than a routine ecg . When we moved to lincoln my cardiologist said she thought I had SVT then after her saying I needed the box put in my chest to record my heart ❤️. On the day of the procedure, she said o it's hormones you won't need this putting in 😯 I was all ready to go into theatre right outside on a bed . I said I want it in !!! Honestly it's terrible the way some people treat us and how rude they are . As you can tell by my posts I will ask anything about my symptoms now as only for me being a loud mouth scouser lol 😂 I probably still wouldn't have any answers Pam . I will put them on there toes now Pam !!! And don't have a problem with a confrontation. Think it's because I have had enough BS of some of these doctors love . Hopefully you will get sorted out Pam and be fine lovely 😊 xxx
I am reaching that point. Thank you for your encouragement .
Google saved my sanity in 2016. My mobility and dexterity deteriorated badly. The Orthopedic Consultant failed to recognise that I had 2 herniated discs in my neck causing severe stenosis. They were testing me for multiple sclerosis and talking about a lumber puncture. Google stated that MS was very, very rare to start with someone over the age of 50. I'm 72 so I managed to stay calm. I Googled the cervical discectomy operation which I needed and then understood what was to follow. Knowledge is power.
All I can say is that we are very very lucky to have our NHS!
I'm in the United States, We are both lucky for different reasons.
You can stop feeling alone right now! If we on this forum put all our stories about being diagnosed wrongly, patronised and marked down as anxious patients ('Dr, my heart has thumps and bumps,I have dizzy spells, I feel breathless and my legs give way climbing stairs but why would that make me anxious?') we could make a book. Perhaps we should 😣
You are right I'm sorry to say. I'll probably amuse myself thinking up titles for said book. Anyone want to join me ? Lets see...Dr. Darts, get your diagnoses on the first throw / Dr. Dolittle , but I think that's been taken. Honestly, being bitter doesn't really help, it makes me sad for all the fear and dread people have been put through. Pam
Seems very common. I'd always been fit and healthy, running 10k, half marathon and 4 or 5 marathons! In 2009 started to have difficulty with running, shortness of breath, went to GP, no examination but thought it was exercise induced asthma and gave me inhaler. Didn't make any difference, was now finding that I couldn't eat much without feeling full and felt anxious every time I started to eat to a point that I would put off going out to eat. Went back to GP diagnosed with panic attacks/anxiety given a beta blocker to take before going out, tried it oh did I feel bad, nauseous, giddy just awful. Went back again, she said couldn't have been medication and put me on anti depressant, started taking it after 6 days felt so bad phoned surgery spoke to duty doctor who said stop taking it, went back few days later saw GP she said "I told you they'd make you feel bad before they made you feel better"! This went on and on, back and forth to GP, sent for mindfulness sessions/CBT all of which did nothing to help (feeling like I was going mad), til end of 2011 (had totally give up trying to run or exercise by now) when legs/feet/abdomen all started to swell. Went to surgery and saw different GP, she took BP, examined me and organised blood tests and an ultrasound. 3 days later she called me to surgery with results of blood test! From what these revealed they thought I had ovarian cancer (big shock), she immediately referred me to hospital, got appointment within 4 days they did ultrasound but couldn't see anything because so much fluid, then had CT scan which showed no cancer BUT my pericardium was severely calcified which basically meant it was squeezing my heart and it couldn't beat properly. Ended up July 2012 having open heart surgery to removed pericardium which thankfully went well and a few months later fit and well again and able to run again! Told on discharge that I may develop an arthymia at some point in future. If I'd have had a few simple tests early on the pericarditis could have been picked up and antibiotics would have cleared it! Last year I started to have difficulty with breathing whilst running, straight to GP who'd referred me, she said ok we need an ECG, it revealed AF so referral straight to cardiologist. Af may have been caused by surgery! Cardioversion in January this year, lasted 2 weeks after which in Atrial Flutter, now awaiting Flutter ablation but not feeling too bad. That first GP has a lot to answer for! Sorry for long post.
It's a crime really.
Sadly the person who is most concerned about your condition is you ( or me about mine). I have always had great faith in our NHS ( at least we won't be over treated as treatments cost money ) and for the vast majority of the time things are done efficiently and appropriately.
Sometimes however we should question and fight our corner.
If they know you have good insurance here in the states they will order many tests, some more than once. I am extremely fortunate to have good insurance.. Sometimes you only see the negative.
Unfortunately it does seem very common, mine was always put down to severe asthma and I was given prednisolone. It was only when I saw a locum GP who the week before had been diagnosed with af that I was diagnosed. My then GP surgery was awful and I felt I had to fight them all the way. Relocated and my new surgery has 2 wonderful gps. One has an "interest" in heart problems and the others husband has af, so we sometimes swap notes! This forum has been a godsend, and as so frequently said on here knowledge is power. Had a problem 2 weeks ago and the first thing hubby said was, what would they say on the forum!
Smart husband you have.
Wouldn't anyone be anxious if suffering symptoms you describe. What sense is there in a diagnoses of "anxiety"? Wouldn't it make more sense to help a person get to the root cause of the anxiety? I just wish that doctors would admit when they don't know rather than giving the diagnoses "anxiety" which just makes us feel it's our fault and therefore makes us feel worse. It's good that you share your story because it helps others who are getting similar runarounds. Personally I do as much research as I can so that I can at least assess whether or not my caregivers have some clue because I definitely know from experience that there are a lot of "quacks" out there and it can be difficult to sort the wheat from the chaff of them. Take care and don't settle for that stupid diagnoses of "anxiety"
Whenever a Doctor orders a test for me I always ask if they have had it and the answer is usually no. I just give them a 'look'. It's because they always say it's a minor test no problem. HA.
I do write down my feelings and symptoms and concerns and ask my Dr to read it in front of me. He does , but only because he thinks I'm excentric and he is indulging me.
I've had great health care including by the NHS, then again:
Twenty eight years ago I had abdominal pain and a GP says that I have gastric flu. That night I have severe abdominal pain and my wife calls the out of hours GP. A locum arrives, says it's colic not appendicitis and injects me with a strong pain killer. In the morning the GP sends for an ambulance. The hospital says that I have a grumbling appendix and operate at 9 p.m. Surprise, I have peritonitis and the entirety of the abdominal cavity is ulcerated and it takes nearly three hours to sort out. Next morning a trainee nurse insists that I should eat breakfast: I spend hours being violently sick. It takes six months before I'm back at work full time. People say that I'm lucky to be alive.
2014. I am diagnosed with a hernia but the CCG won't pay for an operation even though I walk 400 yards and have to sit for 15 minutes. I arrange to have it done privately and go on holiday to a quiet part of Cornwall. On return the surgeon finds three hernia. One is a femoral hernia that should be operated on as an emergency, as there is a likelihood that it will become strangulated and then it's 90 minutes to death if not operated on. People say I'm lucky to be alive.
2014. For years I thought that I had paroxysmal AF but I'm told that I don't as I am a long-time runner. I persist and after years I was believed in 2014 but the diagnosis and prescription of rate control drug was by the EP's specialist nurse. No hand over to the GP. Within days I develop a non-productive cough; I think it's pulmonary toxicity but the EP says by email that the cough will go away in a few weeks. GP says I should go to A&E, who say that I have community acquired pneumonia and discharge me. X-ray results come back and I have a mass in my right lung; readmitted to hospital for 11 days in a geriatric ward: I was 68 and the youngest in the Ward and next door to someone with severe dementia. The young doctors haven't heard of Dronedarone , and give me an Amiodarone IV until my liver function is conflicted. My request to see the EP is refused. I am discharged with no medication and no follow up. My blood oxygen drops to 76% and my GP says go straight to A&E where the x-ray shows a mass in both lungs. At 1:15 am they want to ring my wife, sedate me and put me on a respirator in Intensive Care. I refuse; the medical staff do a sterling job and we all make it through the night. The following day a nervous young doctor tells me that I'll have damaged lungs; they put me on 70% oxygen for two days and I practise yogic breathing. They tell me I was close to death. Some months later I see the EP who says my stroke risk is one and recommends that I don't take an anticoagulant.
2016. I have a full stroke. The ambulance paramedics talk to me for an hour before concluding that I've had a stroke that requires a blue light run to A&E.
2016/17. I'm now partially sighted and the DVLA have rescinded my driving licence. My wife does a magnificent job of coping with me. Today I've been clearing scrub in a nature reserve with others and the sun has shone. I'm lucky to be alive so that I can enjoy the warmth of the sun, the blue sky and a Guinness in the pub with the guys after some sweaty work. I have a Concept 2 rowing machine and I must have a guardian angel as my lungs are just fine. We have to take what we are given and make the best of it; my former yoga teacher taught me well: Namaste. For those who made the wrong decisions I hope that you've learnt, we all make mistakes. Thank you to all who have helped, and that includes you guys who put up with my ramblings.
John
That you have survived so many incidents is a miracle , that you aren't bitter is even more of one. Thank you for sharing a very important message. Life isn't fair and shit happens. Pam
Maybe some of this was of use. Part of my third admission to hospital was written up as a medical paper for the Royal College of Physicians Edinburgh (Case of the Quarter) by Dr. Medford - Consultant & Honorary Senior Lecturer in Respiratory Medicine, North Bristol Lung Centre - that can be read at
rcpe.ac.uk/sites/default/fi...
It follows that other clinicians now know that Dronedarone can cause Pulmonary Toxicity / Cryptogenic Organising Pnuemonia and he can refer to it in his lectures to students. That should help to reduce damaged organs in those of us adversely affected by Dronedarone and Amiodarone.
I was featured in a short video about AF, anticoagulation and fitness by the makers of Pradaxa that is currently on release to clinicians in the UK and USA. It makes the point that being a long-time cardio bunny doesn't protect you from a stroke if you don't take an anticoagulant.
I'm a mystery patient for medical students at the local Health Centre as I'm not your "typical" AF and stroke patient. Only one student has understood hemianopia.
Apparently a photo of the haemangioma on my tongue is used in examinations for dental students. The haemangioma was deemed a bleed risk hence the initial reason I wasn't prescribed an anticoagulant and, it was the reason that my clot-busting treatment after the stroke was delayed until after a second CT as I may have had haemangioma on my brain. It's important for EPs and Neurologists to recognise them. Again it's something that medical students don't recognise or understand the importance.
The reason that I'm still here? Neither heaven or hell would have me 
Seriously though, I'm grateful to whatever deities protect me and guide the clinicians who have done a good job. Namaste (I bow to the devinity within you).
John
I knew what you were referring to. That's what I do to try to have some control. I had a Doctor who did reference her computer during consultations. She still got it wrong, you have to ask the right questions. It's a crap shoot . Pam
Sadly, your story is not uncommon. Your regular cardiologist may well not pick up on SVT or AFib because a 24 hour or 7 day holter may simply not coincide with an 'event'. Cardiologists are experts on the structure of the heart. Electro physiologists ( cardiologists with a special interest in the electrics of the heart) are the ones who treat SVT and AFib.
Like you mine went undiagnosed for 20 years, with suggestions that I was a stress-head!! Like you, my SVT turned into AFib 2 years ago. I was annoyed and angry to realise this, but being angry will only increase the stress you already have on your heart at the moment.
Try to look forward, not back.
Wonder how my implant loop recorder that was in for 3 years didn't pick up my SVT when that's what it's put in for ? And I did have symptoms while it was in but told every 3 months I was fine and it was nothing to worry about ? Some thing went wrong for me and then told my AFib wasn't caught on the box ? When I went back and deamanded a reading before they reamoved it low and behold it had it there AFib . So someone wasn't doing there job properly. Was it the technical team or cardiologist?? 🤔
Hi sweetiepye - I too have had a frustrating and upsetting time with my GP, and now, again, problems with the GP I changed to in the same practice.(hmmm....perhaps this explains a lot, being called a 'practice'; how long do they practice and when will they get it right?)
I originally spoke with the practice manager, and recently chose to write everything down and send it to her.
It is just not good enough! The Gp is supposed to be your primary care - your stepping stone to be referred to the correct specialist.
Having read many complaints on here regarding GPs and talking to friends and neighbours, there appears to be a problem with GPs knowledge of heart matters. If you check out their qualifications and areas of interest it appears that they are all qualified with family planning, and general practicing problems, but not one of the doctors in my practice has any qualifications regarding heart matters!
I know there are GPs out there who are passionate about diagnosing their patient, as I had one such wonderful GP way back in 2015 when I moved house. As I have said before on here, I recently seriously considered moving back to his practice area.
The GPs need to do more courses on heart diagnosis and stop taking offence when patients resort to looking on Google for anything that will give peace of mind.
I too still get so cross when I hear how the GP is failing his/her patient. Who do they think they are! The health service is supposed to be a caring profession and thats all we want from them - to care enough to get a correct diagnosis..........not to ignore to cut costs.
You have been through enough. Please put it in writing to your Practice Manager even if you are staying in the same or changing surgeries. Maybe if more people stated what is happening, it may well change.
Good luck for the future sweetiepye....
Even for arrhythmia specialists it can be very difficult to make a diagnosis of an intermittent arrhythmia from the often vague and non-specific symptoms, so for GPs for whom this is only a tiny proportion of their work it can be close to impossible unless an attack is captured on ECG.
So for any others out there getting frustrated with ongoing symptoms, don't just moan about it – get an AliveCor gadget (for less than £100) and record your ECG when the attacks are happening. Then your doctor can quickly make a diagnosis and sort you out some treatment.
"I'm mostly disgusted at Doctors in general" – it's not their fault you have got a heart problem, and it's doctors who are going to try to put it right for you...
Yes. bring it on. I agree with you and the amount of knowledge compiled would be amazing. Is there any patient input? I find Drs. often disregard what patients report and in the end the computer only has human knowledge to work with. I'm being negative I know, but I've had my hopes up so many times only to be knocked flat
Also , I've used computer diagnostics on line and it gives you a certain set and you choose from that and then you get a sub set to choose from. You only get to choose what is closest to what you're experiencing . So that's where my brain is stuck.. that and how medicine and pharmacies will want to protect themselves.. Anyway I'm cranky right now and really not thinking well.
Well OK I agree that SOME doctors are too quick to call patients neurotic if they cannot make sense of symptoms. And nobody likes being proved wrong so some will ignore the evidence to defend their initial mistake. I'm not saying all doctors are perfect but good or not so good, they are working under difficult conditions and this makes mistakes more likely (see this short video: youtube.com/watch?v=DYanD_G....
Certainly Richard Schilling is not going to be confused over AF! – but this is my point: we need to get clear information like an ECG to make a definite diagnosis and the more people can help to get this evidence for themselves the better the treatment will be.
I have never had a Doctor admit he is wrong I have been ask to leave a practice as I just wasn't a good fit. The reason is I want to know the whys and wherefores of their diagnoses not that it has done me much good. I hate doing this but when I take my husband along there is less crap thrown about. They usually speak directly to him unless I remind them who the patient is . It's always a battle and I am tired and in pain. I am in the U.S. so I don't have any experience with the NHS , I don't see that it makes much difference though.
That is truly frightening. I have not thought of asking to see my records. This could take awhile as I have a different Doctor for everything I have.. They are suppose to consult with my primary care, but as far as I know no one ever has.They are all connected to the same computer system so it should be simple...
I am fairly new to this group. Not to divert the discussion too far afield, but one of my issues with the doctors is the way they roll their eyes and pooh-pooh my complaints about the beta blocker side effects. I find that questions about what lifestyle shifts might allow me to stop taking them get short shrift. They seem to say "Just forget about ever going off them..."
On this site I have read posts from several people who bit the bullet and took themselves off bb's but has anyone worked with a doctor coaching them how to quit these meds?
I took myself off several beta blockers because they made me feel worse that the actual AFib. Hence the decision to go ahead with the ablations. This was supported by my GP and EP.
I also empathise with the video about General Practice. I worked for the NHS for 25 years and agree that too much is being asked of too few. It is an amazing institution being brought to its knees by over use caused by Inappropriate self referrals, patients not attending appointments, and lack of staff, amongst many other causative factors.
However, if you think it is bad now, wait until it gets quietly privatised.
It's pretty much the same over here . It would probably make me angry if I did read them. Pam
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