Had problems with my heart since I was 6. Will just randomly race up to about 200 the highest it's been is 273. Was told it would go away with puberty obviously did not. The frequency of these attacks has massively increased, used to be about once every month when I was about 7 now it's almost multiple times a day. Doctors have never caught it on their own ECGs in hospitals I have a KARDIA monitor which has caught a bunch of the attacks!
I play a lot of sports and I am very active, so it was diagnosed as a minor arrhythmia at age 9, and the doctors now say I am a fit young individual so refuse to look any further. Ive been in beta blockers since 14 and they've recently doubled my dosage to 50 mg a day from 25mg as and when needed.
I doubt anyone will be in the same position, just hoping for any advice or comfort!
have a great easter to those celebrating
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stupidheartgirl
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No worries, I hope you have better luck at your appointment. If you haven’t already maybe keep a diary so you can also note any triggers and trends and share with doctor?
You’ve lived a long time with this, and you know your body best, we find we have to advocate for ourselves a lot to make progress ❤️
Sorry to go on but don’t let them brush you off as “anxious” - there is anxiety disorder as a diagnosed condition and then there are people who on occasions might feel anxious, I think there is a difference. Some doctors can assume -with women especially - its anxiety.
In my personal case it’s a trigger (like stress) not a cause.
Are you in the US? You can get a 14-day monitor if your doctor will order it. You have to keep pushing. When young and 'healthy' it is easy for doctors to brush you off. Don't let them. Be insistent. If they don't listen, try to find a new doctor. Sounds like you know your body and know something is wrong.
I’m in the UK, England more specifically and the NHS is struggling to even get me appointments at the moment. They just keep telling my mum i’m young and healthy so i’m all good. I’m going to speak to my GPs in a few weeks and try and bring it up then so i’ll try to be more persistent.
I definitely have let doctors walk over me in the past, I just don’t want to cause trouble for them but everyone including you is saying I need to not let the doctors just brush it off so thank you!!!
In our family we have a rare genetic disorder that causes individuals with otherwise well and healthy hearts to go crazy in certain situations. Our genetic family issue is something called CPVT. My issue didn't present until 40's and heavy exercise was the trigger (despite exercising heavily all my life). My first attack caused a cardiac arrest and almost killed me but my brother had similar attacks throughout his youth of collapsing etc but by the time he gets to medical aid everything being back to normal. It's actually amazing he is still here to be honest. Our conditions are managed via ICD and beta blockers with my bothers case being much more complicated than mine. Our other brother also has the gene but (fingers crossed) has not had any problems. There are I think 7 different conditions in this category. Qt syndrome etc you should look into. Don't worry if you have no family history because you can be the first genetic abnormality. My brother had every cardiac test in the book and they never found anything for 20 years.... until he happened to have one of these attacks under exercise test conditions..... good luck.
Hey thank you so much for your response, I really appreciate the time you took to write it!!!
So this is funny, because I have thought for years it could be CPVT, I had brought up Wolff Parkinson White to my doctor when I was around 14 and he said no but told me no reason. After that i’d looked at other things and around a year ago came across CPVT.
Thing is I don’t always collapse with the attacks I have a few times but I don’t much compared to how often I have the attacks. See my dad has had a slight problem with his heart since he was little but his only gets bad when he’s tired and it’s no where near as bad as mine, it gets to around 180.
But I will definitely have a look at it in further detail, to be honest i’d kind of given up with my heart and ever getting a diagnosis for a few years now but all of a sudden last night i’d watched a show about a patient getting cured who had chronic pain and the relief he felt, obviously not that my heart is as bad as chronic pain just made me think that hopefully a person could help and bam joined the bhf last night,
My brothers many collapses when younger never made it to hospital. They told him he wouldn't have survived his collapse on the exercise test anywhere but hospital... but he had survived more than 15 similar attacks elsewhere alone...my cardiac arrest was while swimming lengths. I believe if I had been running and not suspended in fluid I would quite possibly have started breathing again once I hit the floor, but obviously this is speculation. If it is CPVT they can tell from a specific blood genetic test done at Birmingham hospital usually. You have a long road ahead but you need to push for answers, especially at your age. These genetic ones usually give your offspring a 50/50 chance of contracting. Thank god it missed my 1 child, but I am sure you would want this info for informed decision making in the future.
Very glad your child is healthy, that is good news!!!
Yeah to be honest seems like the journey is never ending, my parents very much gave up years ago and don’t even believe me with it now, my dads attitude is to get a grip or pay for a private doctor myself because he’s not going to, obviously not going to happen as an 18 year old who’s saving for uni haha.
Mine doesn’t sound anywhere near as bad as yours or your brothers as I haven’t really properly collapsed much I suppose, I just have to sit down on the floor and get extremely light headed.
Again thank you so much for all your help I will definitely keep on looking!!!
Are you an anxious person? It is very difficult to catch these events on a monitor as in the safety and security of a Doctors surgery they often disappear.
I am quite an anxious person but not really when it comes to help, however I was not an anxious child at all I was the complete opposite! Problem is the attacks will happen literally when i’m sat in bed doing nothing got nothing to worry about and bam one will randomly start!
Do you keep a detailed food drink and activity diary to possibly identify a cause? For instance when sitting up in bed are you in an awkward position or did you drink a cup of coffee 15 minutes earlier.
Sometimes these things just seem to appear for no good reason out of the blue and often seem to go in phases.
I haven’t which I should do, one thing that people always said could be a trigger could be caffeine or energy drinks or sugar but again i never drink coffee or tea rarely ever drink anything but water and i’ve got out sugar before for almost 2 weeks but still got the exact same heart issues.
I might have a look at an activity one as sometimes I have bent over to pick something off the floor and bam my heart has started going mental.
I am not qualified to say if this is relevant to you but there is this syndrome
"Postural tachycardia syndrome (PoTS) is when your heart rate increases very quickly after getting up from sitting or lying down. It can get better with changes to your lifestyle, but some people may need treatment with medicines."
You should also get your blood checked out to see if you are deficient in any of the necessary minerals.
Have there been any recent changes in your circumstances such as moving, change of job, personal trauma, a drastic change in your diet (such as becoming a vegan) or even in your local environment such as new cleaning fluids or a server close to your head as EMF (electro magnetic Field interference)" is potentially a concern.
I have lived in the same area my entire childhood, still live with my parents as i’m in my last year at school. I’ve been at the same school for 7 years as well.
I had bad anaemia as a child but it’s just an iron deficiency now it’s really not bad compared to what it was. I’ve had blood tests for Vitamin D and other things and all have come back as a good level.
To be honest because this has been going on 11 years and besides going from a 6 year old to 17 year old nothing much has changed, and when it started when I was 6 there was nothing going on at all at the time so it started completely randomly.
It could be Pots actually as sometimes it does happen if I move too quickly or jolt but it never happens during sport and I play football and it’s never happened during a game or training.
I do wonder if you are exercising too much. Why don’t you try cutting down a bit on it? You should definitely keep a diary and jot down all your episodes. Persevere with your doctor and don’t let them dismiss you just because you are young. There are lots of people on here who will give you excellent advice and support. Don’t be afraid to ask and if you are feeling down, they will pick you up. Good luck.
To be honest, I am a healthy person and in the past there was probably points where I was exercising a bit too much however now as I focus on school I barely get chance to go on a run more then 2/3 times a week which I hate, so I don’t think it would be over exercising.
I definitely need to not let my doctor walk all over me lol, in the past he’s told me my heart will sort itself out if I see a school councillor, (I was 9) and said I didn’t actually have anything wrong with my heart, also said that it could be intercostal muscle pain when I was around 13 and then I said well how on earth does that cause my heart to go above 220 and he just brushed that aside. Can’t lie he’s not the best.
I will definitely try bring it up to my GPs and actually fight my case lol
Hello, have you tried using or of the watches that read your heart rate etc. If you keep it on all the time and link it to your phone you could show this to your doctor. I am not sure on their accuracy but you could give it a try.
Hey thanks for your reply, I have tried that in the past but their reason was oh it’s a watch so it’s probably inaccurate anyways so we’re not going to base anything off this. My parents got me an apple watch specifically like 7 years ago and then bought me a new model around 2 years ago which has the ECG app on and still they do not care Thank you anyways!!!
Great you have a Kardia. Do you have a cardiologist - you can send the results via e-mail if they are unable to catch the arrythmia when they test you. Is your heart irregular during these episodes or regular ( and very fast)? I would try and get a referral to a heart specialist. You are young and there are many ways nowadays to treat this once a specialist has assessed you. As said above if you are exercising intensely it might be better to cut down .
I have had a cardiologist since I was 8, i’ve sent him the Kardia readings before and all he said was well it’s not on a hospital ECG so it’s probably not accurate. Even though Kardia monitors are recommended by the NHS for being the most accurate????
They are regular when they it beats insanely fast not irregular at all which I don’t really understand to be honest.
I definitely am not exercising as much anymore I barely do 3 runs a week if i’m lucky and they’re no more then 8K each, I haven’t really had much time with sport over the past two years lol
Thanks again for your advice, I really appreciate it!!!!!
I am not a Dr but it might be SVT ( supra ventrucular tachycardia). I have that a few seconds several times a week and can't imagine what it must be like having sustained episodes. Alternately it might be Atrial Flutter which doesn't respond to medication but is easy to treat with an ablation. Have you had an exercise test? It doesn't sound as if your cardiologist is taking your condition very seriously.Stress is also a key trigger but as you say hard to believe you were stressed enough at the age of 6 to trigger an episode .
Do either of your parents have arrythmia or your siblings ( if you have any)?
Thank you, honestly you even saying my cardiologist isn’t taking it seriously reassures me. I just thought it was me being crazy but honestly the guy essentially just makes me out like i’m crazy.
This is what I told him, as a child I was not stressing out by watching dora the explorer on TV causing my heart to go crazy lol. I did explain to him that 6 year old me was not an anxious person at all and the attacks would literally happen when I was doing something I enjoyed!!
I also brought up SVT to him and he just dismissed it but with no reason why, I don’t think it is Atrial Flutter because I was given beta blockers and I have them when i’m having an attack and it doesn’t bring my heart rate down.
I have not had an exercise test no one has ever even brought that up to me. Probably because my it’s always been fine during exercise which is what I have told them. I don’t know though
My dad has an arrhythmia no where near as bad as mine as his only goes up to about 180 max but his only happens when he’s tired so he knows his trigger. Mine just happens whenever it wants lol
Well the fact that the Beta-blockers don't bring the rate down i.e. don't work points to possibly Flutter. Meds don't work with that condition. Can you try and get a referral to an Electrophysioligist ( specialist in heart rhythms) ? It is obviously diminishing your quality of life and needs sorting.
Sorry I didn’t see the auto correct that was supposed to say they do bring the rate down!!! Apologies
I have no idea how to see an electrophysiologist and I doubt i’d ever get referred because my parents and cardiologists attitude is to just get a grip to be honest.
I have found that cardiologists often look at Kardia output and if it does not consistently show Atrial Fibrillation they say that's "just" ectopics and prescribe medication.
I suffer from frequent ectopics of one sort or another, and they make me feel ill. I am old, and my heart rate never goes anywhere near 200. what makes me feel ill is that the heart is irregular and sometimes the heart stays at 110 for hours on end always after exercise.
For you Increasing to Multiple times a day means that the issue is getting worse. I am not a doctor but If it were me, I would insist that a heart rhythm cardiologist takes some notice and diagnoses the problem.
You are young, and episodes where the heart rate gets over 200 should not be a problem in the short term, assuming that there are no other heart related issues.
Over time, that may not be the case.
In terms of diagnostics, you can wear a Holter heart monitor for a few days, or they can give you an implantable loop recorder (ILR).
The ILR sits just under your skin and can be worn for extended periods.
I have been given a Holter on several occasions. I have been told by cardiologists that the ILR is more likely to detect serious arrhythmias than a Holter.
For me, the Holter measured amongst other things what they call a "burden" (which means the % of time your heart's rhythm is irregular) of 14% over a week and when I feel ill, the burden goes up to 40%.
You need to be guided by the electrophysiologist about which sort of monitor you need and what the next steps are.
There are procedures which may help.
BTW which Beta Blockers are you taking? 50mg seems a lot.
Yeah a lot of people have replied saying thatI need to be more insistent, which I have not done, to be honest my parents very much don’t support me with it there attitude is essentially get a grip which the doctors again see and agree with them. I finally get to go to appointments by myself now so I think that may help me.
Yeah my heart has been going over 200 since about 11? It quite normally goes to about 250/260 max being 273.
Do you need surgery for the implantable loop recorder??
I didn’t even know about an electrophysiologist as no one has ever mentioned this to me either.
I’m taking atenolol which even in the box says don’t give to under 25s and 50 mg does feel like a lot, i’m permanently shattered now.
Reading some of the other posts, I see that your cardiologist said that the Kardia may be inaccurate. I think this can happen, especially if you use it under suboptimal circumstances. I once used mine on board an aeroplane and there was a lot of noise on the trace. The Kardia said Atrial Fibrillation, but the cardiologist disagreed.
Could your problem be anxiety?
In the UK, a GP can request a Holter study, so you don't need to consult a cardiologist. Certainly, it would reveal any serious issues, and give the doctor a clear idea of how often you are getting these symptoms. It will certainly detect the periods when your heart rate is very high.
I’ve had a few times when it’s been like that and i’ve had to do the reading again but there’s been so many that have actually said atrial fibrillation.
I will speak to my GP about getting a Holter study
If it says AFIB, someone should take it seriously. Because I'm old, when my Kardia said Afib, they put me on Anticoagulants immediately. That may not the treatment for people of your age, but an experienced cardiologist needs to determine if you DO have AFIB.
Any treatment would follow on from that. It's made difficult because of your age. They don't want to put you on a treatment which will be necessary for decades, but neither should they effectively ignore it.
Sorry it's so vague. The main thing is to be diagnosed properly.
An electrophysiologist is a cardiologist who specialises in heart Rhythm problems. I do see your problem, if you don't have supportive parents.
An ILR is inserted via a pretty trivial procedure under the skin. I think they do a local anaesthetic.
The cardiologist I have seen thought that it would be more likely to detect serious irregular heart rhythm than a Holter because atrial fibrillation can occur very transiently and (he said) may not be detected via a Holter
Remember though we are talking about irregular heart rhythm, not just fast. How do you feel when your heart beats at over 200?
Does the BB help. The idea of Beta Blockers is to reduce the heart rate, you are on the most appropriate dose of it. They all can make you feel dozy
Thing is my exams start in less then 3 months so I doubt they would want to do anything before then, hopefully afterwards I can push for it more.
My chest actually physically shakes when my hearts above around 220 and i feel extreme pain in my heart as it beats. I can also feel my heart ‘reset’ it essentially skips a few beats and then has a really hard beat then will jump down to about 60 bpm.
Yeah the beta blockers aren’t the best but my side effects were way worse when I was younger, seem to have settled now that I am older.
Get your parents to pay for you to see an Electrophysiologist privately. Having episodes of a heart rate of over 200 bpm ( that is a reading from your Kardia I presume?) for so long might be damaging your heart . You need to get an Ultrasound and exercise test. If you were my daughter I would be frog- marching you to a relevant specialist private or not! 😄
My parents don’t believe I actually have much wrong with my heart. My dad says if I want to see a private doctor i’ll have to pay myself and as a kid who’s about to go to uni i don’t have the money haha.
If i get the money at some point ill definitely try get both of those done.
Hiya, happy Easter 🐣 to you too! Have the doctors ever considered supra ventricular tachycardia (SVT)? It’s what I have and is common in young people too (I was diagnosed at 49 after many years of symptoms definitely made worse by hormones). Have a look at the NHS page for SVT and see if it matches your symptoms. It is a benign condition but Episodes do tend to increase as you age and it can cause a lot of anxiety because you just don’t know when you are going to get an episode. I’m on beta blockers but am on the waiting list for an ablation which will hopefully get rid of it for good. Good luck with your exams - stress can definitely trigger SVT. Take care x
I had some heart concerns last year, GP advised echocardiogram, but NHS recorded message suggested a years wait, fortunately I was with Benenden Health (for a modest subscription can step in if NHS delays) and able to see a cardiologist privately, I did note that the consultation fees were really not that high, in the order of £150 for consultation, £350 for a 7 day heart monitor - which may be the thing that gives you the result you need, all that can link in with your medical records, worth a try. If you look on line at your local private health provider you may well find that some of their cardiologists work at your local hospital, once diagnosed you can join the NHS system.
Just a little thing that might help. Take your bp regularly and take a photo each time of the result. I recently bought a new bp monitor which flags up irregular heatbeats on the screen so you have a record of that to. I think in my case the IRHBs are due to my statin medication.
Try to find an electrophysiologist in your area Google it. They are cardiologists who specialise in the electricity of the heart. If you have the financial means to make a private appointment that would be the best thing to do. I was waiting for ages for a cardiology appointment so I booked a private one with an electrocardiologist. If they decide that you need further investigations and you tell them you don't have private insurance they can arrange for you to have investigations through the NHS.
Couple of things. You've had difficulties trapping the episodes before, but now you're getting them several times daily, so things are looking good in terms of getting them recorded. Yes, it can be quite hard getting attention from a cardiologist, but as suggested, keep a diary of the episodes and once you have sufficient evidence, use the diary to discuss with your GP, to say things are clearly getting worse and you need re-assessment. With the diary, note time of day, how long the episode is, any triggers that set you off, the rate, whether it's regular or irregular, whether it suddenly kicks off and then stops or is it gradual. If you can record a Kardia reading as well, that'll help.
If things are too infrequent still, and it's difficult to catch on the Kardia, there is an alternative called the Wellue, there are a couple of reviews on here. Not so cheap, but quite good and better than being unable to convey your situation. You can get up to a day of trace at a time and it would show SVT, or Flutter, or whatever.
The other thing is that if a private option is not available to you, you can request to see a particular consultant (perhaps for a second opinon) on the NHS, see nhs.uk/using-the-nhs/about-... the Choose and Book system.
Good luck, and just remember, a heart rate of 200 is not normal and you should be properly examined, tested, and treated.
You re not a stupid heart girl at all ..your parents are the stupid ones for not being more helpful in your care . You clearly have a condition which needs further investigation ...write down all your symptoms on a piece of paper the next time you have an appointment and don't delay in getting an appointment. Exams are a stressful time but not everyone taking them would show symptoms like yours .(You might wait a long time for a holter monitor on NHS there is a waiting list now of up to a year although it might vary depending on which area of the country you are in ) Good luck and ask to see a different doctor if your regular one doesn't listen to you ..maybe take a friend in there with you .
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Thank you anyways!!!
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