Hi, I will try to get straight to the point...i'm sick to death of having to live like this and not knowing why! I'm 49 and female, I have severe painful either palpitations or ectopics, now I have them every single day of my life for hours on end and they hurt.... my heart will race over 100, especially if I exert myself... I start to feel unwell but its difficult to say how, I get breathless and feel light headed or that i'm going to fall to sleep and I can't stop it. This has been happening for over two years, but has now only just got to the stage where its almost every single day of my life. I now cannot eat a meal because it upsets my heart so much I feel like i'm going to pass out, its the same if I eat at home so i'm now just snacking, I can't drink alcohol as this does the same to my heart, my one treat was chocolate but this is now affecting my heart and so is coca cola, so there has gone my social life or any treats in life, ...if I eat or drink my heart races like crazy, hundreds and hundres of palps, light headedness....its just not worth feeling like this so I don't do any of the above if I can help it.
This all started whilst having chemotherapy for breast cancer in 2011...In 2012 I saw a heart dr who said I had something wrong with my left Ventrical..it was bulging and she said I had grade 2 heart failure.... but she said just to get on with life! Now I've moved home and am under a new heart dr and before she knew anything about me she said she does not feel I have heart failure at all????? She feels something else is making my heart race like this.
Here is an example of my life...today I got out of bed and got in the shower, just trying to wash my hair my heart rate was at 143 bpm!! I then got out the shower and tried drying myself even though I was so very breathless, I checked my heart ...155bpm...then it started doing the stop and start thing where it misses so many beats my heart rate dropped suddenly down to 50 bpm...so I had to sit down in the bathroom as I was panting for air.
No one professional wise is doing anything to help me, they say they don't know why i'm like this, the g.p. said to go to hospital every time I felt like this, so I did, 6 flaming times, once I had waited in A&E and was laying down on a bed my heart slowly calms down to a normal rhythm and they don't find anything wrong. I have had a 7 day tape done and twice it didn't work, but they did catch that my heart was missing every 3rd beat, which they said was fine but uncomfortable,! I don't know how to get someone to help me, I don't want to live like this...any ideas on what is going on with my heart and what can I do please, I so sick of all this. xx
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honeybea22
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Although the symptoms that you describe are quite common, prolonged arrhythmia is very stressful and of course anxiety makes matters worse, especially without a clear diagnosis.
Evidently you're not receiving the help and advice to which you are entitled. The best advice I can offer is to insist that your GP refers you to a reputable centre of cardiac excellence (not just any old hospital). Cardiac specialists are likely to be much more sympathetic to your problem, and they'll know all the solutions.
If your GP won't help, do some research on the web and contact a cardiac specialist directly. From personal experience I can recommend the Basingstoke and North Hampshire Hospital as an example of an excellent facility.
Remember, you have the right to be seen at any NHS hospital in the UK, irrespective of where you live.
Hi honeybea22, I completely agree with PBailey. You are not making this up and you're not alone! Contact your new GP and ask to be referred to the Rapid Access Clinic in Royal Brompton Hospital in Fulham. Think of it as a shopping trip to Harrods! The clinic has a policy of seeing a patient within 2 weeks. They will perform all the tests there and then and you will get the results from the consultant straight away. That way you'll know definitively what's going on! What I can tell you from personal experience is that the heart is a fickle thing which can be affected by stress, tiredness, too much caffeine, even a drop of alcohol, smoking (although I don't), not eating properly. Basically it can feel that you're life is on hold which can cause you even more arrhythmia! You're not making it up, it's affecting your life dramatically and you need to find someone you trust to talk you through things! Good luck. X
Thank you all for your help.... I'm still the same, its happening every day now..i wish there was a site I could look at that I could ask 'this is happening is it ok' for example... I will be in bed and suddenly I can feel my heart beating really strongly, almost to the stage where the beats are extremely uncomfortable... and I get a niggle pain, it feels like the heart is racing, but sometimes its not, its actually only in the 80's but ive got all this heavy pressure feeling and there is no way I can sleep. What I have decided to do is one, reduce my level of Thyroxine, my new g.p. upped my dose and I feel this is not helping, so I am going to go back to the dose I was on and felt fine on. I am also now reducing my heart meds, and am going to stop them, as this dr did say I didn't have heart failure! So if I end up at the hospital I can say well stop messing me about and tell me what is going on. If things do not improve I will ask to go to this Rapid Access clinic, I did not know this existed, so thank you very much for this MrsP-C. I feel i'm always moaning, but I always feel so flaming ill... I just took my little dog for a short walk yesterday but was panting, with a heart rate of 130.
Surely it should not be going to 153bpm just to shower and then drop to 45/50 because i'm missing so many beats!! xx
I do hope your GP has explained that an over-active thyroid can cause all your symptoms? It certainly sounds to me, with this new information, that your thyroid levels are not being controlled properly. How long since you had yours tested? I used to have mine tested every 6-8 weeks (although we do call our GP Dracula!). Joking apart though, he's excellent and I owe him my life several times over as he tests for things I've never even heard of just to make sure! Perhaps make an appointment with your new GP and ask for a new level to be done just so you rule this out? X
For years ive always been on a dose of 125 one day and 150 the next day, 150 was too high and 125 too low, but my new g.p. who I have been with for 8 months has put me on 150 a day, so I am wondering if this is what might be making things worse, this is why ive decided to put myself back on the 125/150 alternate days. He did say one of my thyroid level readings was high, but the main one was ok and that the main reading was the one he has to go by! He knows the trouble i'm having with my heart but has not suggested it could be my thyroid, so I am going to try doing this on my own. If I feel better I will then go and see him and tell him, but I know it can take 4 weeks to see a difference....only then after this will I ask about going to the Brompton.
Goodness, it sounds wrong to me. I am no doctor but I do know that thyroid levels play havoc with heart rates! Check NHS website for confirmation. My blood pressure was sky high last year but my cardiologist told me he wasn't worried about it. He'd never checked it since my pacemaker insertion in 2008! My GP highlighted it during a routine catch-up and asked another cardiologist consultant for a second opinion. He was astounded and put me on meds straight away which almost immediately cured all of those symptoms! They are only human after all but doctors can make mistakes at every level. I always say that it would be much different if they were actually living with these symptoms themselves or watching a loved one battle with them! Push your GP for further thyroid investigations. You're not being paranoid, you only want an answer as to why this is happening. No one likes being in the dark about what's going on in their own body, it's the most frightening thing ever. When you know what's going on then you have control. The Brompton won't be able to help if your heart is being controlled by a different underlying illness. Get that one off the list as a potential trigger first as if it's just a tweak of current meds then you'll have a much faster improvement but please, promise me you'll speak to your GP first before tinkering with your meds yourself?
Hello, well I had a really bad night last night concerning my heart...I woke up to find it pounding in my chest, really hard, but it was only beating about 100bpm...it was just so hard and heavy I just did not feel well...and strangely I could not stop coughing? Why I don't know as I don't have a cough, but the more I coughed the more breathless I got and the more my heart sped up. When hubby got up for work I told him that I felt so rough and weak I was going to just stay in bed for the day and try and let my heart rest and get some sleep...but of course no chance, 3 phone calls and two lots of people knocking at the door I got up at 10am. I rang and made an appointment with my g,p. and saw a new one who is with my surgery for a year whilst another dr is away... he listened to what I told him and he said he felt I was in AF... he prescribed me some asprin to take (75mg) a day and ordered a blood test and an ecg, both being done in the morning. Blood test is to see if it is my thyroid gone too high like I have been suspecting....he also said to go to A & E just to get checked out, but I said no as I don't want to be up there at night,, at my hospital you are there for hours waiting, and I know they will just say everything is fine because when im resting it normally is. I did say I would go if anything got worse and also that I would probably go in the morning.. So maybe I am in AF, I don't know....i'm still very confused with all this but will await my bloody test results as I feel the thyroid is playing a big part...Thank you so much for your helpful replies, xxxxxx
hi ,,, can I ask how you are now please,, I too have palpitations,, hope you are better xxxxxx
Hello honeybea22 im so sorry you are going through this. I have been going through the same thing for over 25 years. Have your self checked for MVP (Mitral valve prolapse ) that is what they found out I had. they do an eco on on you and it takes about 15 min's then you would know.
It sounds very much like IST (inappropriate sinus tachycardia) but the missed beats area mystery though. I have IST (self-diagnosed as my GP & elderly cardiac consultant are UTTERLY, UTTERLY USELESS - like a lot of the doctors today) The 24 hr Holter and other tests don't show any abnormalities as it the heart's normal sinus pattern, just very, very fast, and, as you say drops back to normal upon rest. My 24 hr showed a period over 3 hrs of a heart rate at 140 bpm, which my wonderdul GP reported as "relatively normal"!!!! Relative to what? Certainly not a normal LIFE. The accompanying breathlessness is appaling, I feel like I will die. My life has been taken away and I cannot do much at all, except exist. Our damned NHS is not interested at all. I'm 68 and therefore not valuable as a person now I no longer pay taxes! I got out of bed in the morning, took one step to the window and drew back the curtains. I had to sit down quickly as my heart rate shot up to 130 and I was gasping for breath. Like you I don't want to live this "relatively normal" life, but who will listen to us? My GP is not willing to do her work properly. Ask yours if s/he thinks you have IST. I would bet that s/he has never heard of it. xx
Hi Blue2... Sorry to hear about your experiences too. I'm not sure medicine has always been this bad but it seems a familiar story of clueless doctors being paid too much to sit back and not use their training effectively. Yes, they're busy, and yes some people do a use the nhs, but not everyone, and some people live a life of misery! I do sympathise you, I'm experiencing a similar thing. I don't think I have IST as I think you need a fast resting heart rate for that? Nonetheless I've had sudden onset rapid heart rates, the light head, breathless etc.... Who is actually looking after your care now? Do you see a cardiologist?
I was a biomedical scientist all my working life, so experienced the decline of the abilities of doctors in general - in inverse proportion to their rising arrogance!
My 24 Holter showed over 3 hrs of 130+ bpm at around 6 - 9pm which my quack said was "relatively normal" and a long episode of 140 bpm around 2 a.m. I told her my exercise tolerance was zero because of the breathlessness and she, who knows nothing about my life, said you are breathless because you don't exercise!!!! On the results of the burst of heart rate in the wee hours, I said sarcastically that I must have been doing calisthenics in my sleep. I have never consulted with her again. She referrred me to a useless cardio who no doubt was influenced by her input that I'm a fat lump who doesn't exercise. I don't know how people can protect themselves from lying GPs. What she does not accept is that I have so much I want to do, have always been very active, and this enfprced inactivity is appalling to me. I'm toying with asking for a second opinion, a cardiac electrophysiologist particularly, but I'm not sure they can actually do anything about IST. You know what docs say if they can't throw a pill at something? Yep - that's right - it's all in the patient's hypochondriacal head!!
That's a very well articulated assessment of what goes on within the nhs every day, across the country. Is it bad medicine or just the culture of medicine? Is it bad doctors or is it that they are victims of NHS constraints? I'm guessing it's a firm mixture of all those factors. Medicine is about slotting into neat and tidy boxes (ie:common bog standard illnesses, in which you certainly wouldn't need a medical degree to identify). The problems begin when you don't slot neatly.... And if you don't slot at all, chaos ensues for that patient. This is where the nhs doesn't care for its patients. All it does is create tremendous amounts of anxiety and contributes further to the progression of the chronic illness. I much prefer a doctor who says he or she doesn't know something to the ones who are not interested in challenging themselves, and their easy and cosy lives, to try and find out what is wrong. Most people who are deemed to be hypochondriacs are infact not hypochondriacs but victims of out the nhs. It's already happening to me with an illness that's going on, symptoms developing, but with a gp surgery who clearly sees me as a patient with anxiety. I'm having more episodes of tachycardia recently, my rates start suddenly of 180 before reducing. All my gp could say in response was 'oh, but you were in sinus rhythms again' with a hint of contempt that I had wasted A&E time again, rather than being concerned enough to do or suggest anything. There's no proof my heart is in sinus rhythm initially, I often haven't got a trace done until an hour later when my heart has reduced to 110-20 etc... You feel so in limbo whilst waiting for outpatient appointments or investigations... Doctors just don't get it....
Hello everyone, Sorry for my later reply but I have been waiting to complete all the tests I was due to have so I could tell you what the dr's had to say about all of this! One evening I had to take myself off to A & E after eating a meal, my heart was at 180bpm and I could barely breathe, I was lifting my shoulders up so high to try and get some air into my lungs, it was pretty scary....they put me straight into Resus at the hospital as they thought I was going to go into cardiac arrest!! I was put on oxygen which helped me greatly, but they said I had to have the oxygen as my levels were too low, which I have been telling them this for ages now. I was then put on a ward for the night and found I needed even more oxygen during the night. I was sent home next morning with an appointment to see the heart dr in a couple of weeks time, now this is the interesting part lol....I eventually saw the heart specialist, I told her how I can't do anything at all without my heart racing madly, how its affecting my life so badly, how I can't do anything....she said she did not feel I was in heart failure any more, but she said we needed to find out why my heart cannot stop racing all the time, she said something is causing this, but I tried to tell her it only started when I had chemotherapy for breast cancer, so that must be what started it all off....she made me reduce my Thyroid medication, as this can make the heart race, so now im having side effects from not getting enough Thyroid meds, I.E. cold, tired, exhausted all the time, so I have these horrible side effects added to my life now. She also said she would send me to a gym to try and help me get my health back on track after fighting the cancer, some kind of gym these dr's can send you to free of charge, she then put on a 48 hour heart monitor on me and told me I will be coming back to see her within six weeks to get the results of the monitor, to see if we can then find out what on earth is causing this racing heart, and to sort out this gym membership...so I went away feeling very reassured. Stupid stupid me. After waiting 3 months and still no appointment from her for my results, I rang her secretary and told her I had obviously been forgotten about, and just how that makes me feel great when im struggling with everyday life. I wanted to know the results of the holter monitor as I did have a bad turn whilst using it, and I wanted my appointment to see the dr asap. Well, the very next week I got a letter from my local G.P. it was a photo copy of a letter my heart Dr had sent to him, so she had not even bothered to reply to me...and then letter when on, The holter monitor showed my heart beats at up to 170 beats per minute, and mostly when im exerting myself, i.e. just walking, but also when resting, and with this she no longer needs to see me again!!!! I could not believe it, so i'm no longer a patient of hers, so no answer as to why my heart beats so fast, like she promised she would find out, and surely the fact its beating at 170bpm would be cause for her to see me to stop this happening, my God how can she just leave a patient living like this...I am so very shocked. That's it, no more appointments, no offer of the gym or anything, she has obviously totally forgot about all what she told me she would do, i.e. find out why my heart can't stop beating so fast, and the free gym, well what a good dr she seems to be I'm in shock to be honest, I can't believe I or any human can be treated like this. Ive lost all my confidence in the dr's now, like one of you said, they are not interested. Ive just been 50, I should have a good like ahead of me still, but I feel like ive just been dumped, no help etc, this is very disheartening for me. I hope you are all doing better than I am ..xxxx
You're not alone. my GP has done the same thing - says my tachy is "relatively normal". I have no life now. I feel murderously angry at times, and dearly feel like depriving her of her smug little life, but she's not worth going to jail for!! I just don't know what we can do. We pay NI all our working lives, and when we need it, there are all kinds of obstacles put in the way back to health. National Health Service? Baloney - it's an international sickness service.
Me. I'm here. Same problem. The problem with the health services is they have a quantity overcquality approach. It's s business and were expendable because we cost them too much money. Although, I work in cardiac theatres. How ironic.
Oh no honeybea how demoralising. I myself had an incident similar to you on Saturday, where my heart went to 181. I went to the ER, although when I got there my rate had reduced to 116. No bloods were done, just an ECG and obs. They waited until my heart rate was below 100, resting did it I guess, and I was discharged. My ECG was normal (I think) but there was no interest as to why it happened. It's very scary, the sensation of a racing/thudding heart in your chest and throat, the associated light headedness. I've only had this a couple of times (although I expect it to happen again) but how do you live with it so often? Were you in normal sinus rhythm so no arrythmia, just tachy? Regardless it needs attention, you mustn't give up. Have you considered these diagnoses, Inappropriate tachycardia syndrome or Postural orthostatic tachycardia syndrome? Can you get re-referred to a different cardiologist? It just isn't a satisfactory enough outcome to just let it be. It's your nhs, you have the right to get another opinion... Ok?
I was just wondering if your first Cardiologist could be "re-visited" or if you could see an EP?
Also I was wondering what your latest EKG says...what your QRS number is, like is it over 120, what is the QT (over 440?) etc...does the overall say "normal EKG" or "abnormal EKG"?
If you can get your hands on ANY study you've had done it would be great to get data!
Do you have an iPhone? Do you have any apps that can record or at least give you your HeartRate? There are some that can give you 1-lead EKG.
Do you take your Blood Pressure Daily? Can you get a hold of a Blood Pressure Monitor and a finger OxSat and HR monitor at your local med supply or Pharmacy? Take records!
If you can get an EP visit show your records! Talk about your Palpitations , skipped beats, and other horrible arrhythmias you are suffering. You should have a stress test with a treadmill or with thalium or meds injected. Clearly you have some kind of tachycardia going on, SVTs, or PVTs.
Your symptoms sound alot like symptoms I've had hon. Do not give up on yourself, it is not in your mind. You are not imagining it. Get yourself to a qualified EP NOW! GET EKG, get stress test and echocardiogram, or stress echo NOW! Thx for listening! I will talk more later if you want to!!!
I'm going through pretty much the same! I have around 60 ectopics every minute but no one is slightly bothered! The doctors just tell you to get on with it. No care at all. If it was them going through it they'd make sure they got sorted. I'm 47 female.
Hi, I sympathise with your condition, similar to mine, but mine is not as bad. I have 1st degree heart block, ectopics and palpitations. My is worse after eating, virtually given up alcohol. Saw the cardiologist last week, mentioned problems after eating, he said that he is a heart doctor, not a stomach doctor. He arranged a mycardio perfusion scan, waiting results on that. All the other results data seem OK, so recommends I go back to my GP. I have had digestion problems in the past which were unresolved. Maybe Vagus Nerve issues in my case. Best Wishes to you, hope you get sorted.
I started getting Afib in the end and to have an ablation…. Wow the difference is fantastic. I didn’t realise just how bad my heart was affecting my life till after the ablation. I can now eat a big meal, drink alcohol, eat chocolate. And dance. I feel so much better. Good luck to you xx
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dilated cardiomyopathy/ventricular tachycardia 
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