Hey everyone. This is a rant/what would you do, if that's okay.I have mitral valve regurgitation. No real issues with that. All looks good apparently on ultrasound. 24hr monitor showed my heart rate going to 140 at midnight so I would have just been either asleep or watching TV - no reason for it going up.
Cardiologist said as I'm not blacking out it's not a problem but agreed to a tilt test though long wait for this.
My fitbit has recorded an episode of A fib and several cases of my heart rate shooting up (one time to 208). Sometimes it's shoots up really high, say 175 then drops to 52. This is when I'm sat talking or watching TV.
I said to the cardiologist that I thought a longer monitor would surely be worth while but he didn't agree to it and just mentioned a kardia. I'm tempted as if you do the subscription then it tells you about other rhythms too, as I get inconclusive on my watch fairly often when I'm not feeling great. But it's so expensive and I'm worried about wasting my money.
Just telling me the high heart rates aren't a problem as I'm not passing out doesn't feel enough for me. He was so adamant there wasn't a problem and only after I questioned more did he mention the tilt test. I'm pleased that's being done as I've always had issues standing still as I feel faint, though have never done so.
Just feel like I'm being a drama queen and unsure whether to keep trying to gain more info myself or not bother.
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NightOwl8
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Others will come along that know a lot more than I do but one thing I know if I was not happy I would certainly research the situation as well as maybe asking for a second opinion
You come and rant away and I hope you get some helpful replies
I'm surprised your cardiologist isn't worried? Heart rate that high? And there not concerned wow ok. That's good your not fainting, do they know what's causing the high heart rate? I hope your not waiting too long for the tilt table test are they testing for POTS? Sorry for all the questions I just feel so bad for you. I noticed you said mitral valve regurgitation what stage is it at mine is moderate to severe aortic regurgitation and moderate stenosis. Do you get any other symptoms with your high heart rate like palpitations? Anway sorry for rambling I would definitely look into it further get some more info. Hope your able to get some answers xx
Thanks for your reply. That's what's bugging me so much. It never used to get so high so it's getting worse but they don't seem to think it's an issue so I feel silly for feeling like it is. The 208 was just a few days ago but when I spoke to him I did say it regularly goes above 120 for no obvious reason and he's seen it get to 140 on the monitor report. I don't mind the questions, no worries 😊 I get palpitations quite a lot. I can also get breathless and feel lightheaded but not every time. My heart rate seems to occasionally go up without me noticing sometimes too, it just gets recorded on my watch.
Yeah he briefly mentioned POTS. He said around 6 months for the tilt table test, we'll do that and go from there but he's not concerned.
The mitral valve is mild and has never really caused any issues - just confuses Dr's when they listen to my chest and I've forgotten to mention it haha.
It's been going on for years now, getting worse as time goes on and I'm struggling to accept them telling me it's normal. His only advice was to drink 3-4l of water and avoid drinks like coke as they're the worst thing possible according to him. The last consultant from about 3 years ago said some people are just like this and simply need to sit down to wait it out and that's normal for them. The consultant I spoke to this time said he agrees with the previous one. I do feel that they get to brush you off a bit easier when everything is over the phone.
I'm just a bit fed up with it. I appreciate that it's not a terrible thing to be dealing with but it's still not very pleasant and I find it more annoying feeling not right and not knowing the actual cause for it. Knowing a reason for it would help me to accept it more and perhaps feel less silly about it all.
Six months’ wait for tilt table test? In the meantime, you could do a poor man’s tilt table test. You can do this yourself at home (easier if someone can help to write down readings) or your GP or practice nurse can do it.
It’s just a basic version of a real tilt table test, but you never know it might yield some useful information.
There is a condition called inappropriate sinus tachycardia (IST) that causes sudden episodes of tachycardia. It’s somewhat similar to POTS, and sometimes specialists have a hard time telling POTS and IST apart.
I wonder of it would help to see a cardiologist who is an autonomic specialist. Most cardiologists don’t have any training in autonomic problems, unfortunately.
My Fitbit often 'does me a frighten', showing HR of 211 when I'm resting. I don't feel my HR hammering at all. On the occasion that I actually spot it I do try and take my pulse at my wrist but by the time I've got a timer up etc the Fitbit 'peak' has dropped.
I've decided it's an anomaly on the device. I have quite a few ectopics every day but am definitely in sinus.
So my question is, are you able to check your pulse at any of these times that the monitor is showing a peak?
I did wonder if it may be the watch exaggerating it so earlier tonight I dug my little pulse ox finger clip thing out as that has always been pretty accurate. I will try to catch it as it happens. I know my heart rate definitely goes wild at times but you're right, it could perhaps be off with just now high it goes. I wish I understood ECGs more as mine are pretty interesting looking at times. I might eventually see about getting a GP to look them over. The combinations of questionable ECGs, crazy heartrate and symptoms are driving me a bit mad I think!
This sounds so familiar and you have all my sympathy. The devices are helpful to spot trends but I don't think Fitbits etc can always be 100% relied upon for every moment of every day. This is Wednesday above - a gym sesh at 6pm, and then this unsettling report of 212!! I don't think it can go as fast as that without me noticing?? It also draws ECGs for me, but they're only 3 points of contact. And do I really want to start digging for more data??? It can drive you nuts, truly.
It's reassuring to see someone with something so similar happening. Perhaps the pesky fitbit is winding me up haha. I do definitely feel my heart going absolutely crazy at times, which is annoying but it does help to know its likely not quite as bad as it seems on the data.
That's why I thought about getting a kardia, as the consultant mentioned. Then I feel like I may end up with more data I'm unsure what to do with or all is not quite as bad as it seems and I've wasted a lot of money.
I have also flirted with the idea of a Kardia - my EP recommended it, said I could send her those ECGs if I ever went back into Atrial Flutter. But... Maybe my heart will calm down and then I'd have to learn how to read ECGs and... Sigh. You can drive yourself round the twist! Xx
Sounds like a good idea if you were recommended but you're absolutely right, it can definitely drive you round the twist. You seem to have a good balance from what I can gather and how you've advised me a bit. It's important to not get too worked up isn't it.
my fitbit also has erroneous readings sometimes and when I dbl check it against a finger worn pulse oxymeter it's like the fitbit is doing a dbl time reading showing twice what the oxymeter shows
I have the same problem. My cardiologist blamed the app and then ignored the subject completely. I had a stress test which was unremarkable, no other information given, and promptly discharged me! That solved his problem but not mine. I don't know who to turn to next but will watch for your replies with interest. Good luck.
Hi just to add the basic Kardia is less than £100,absolutely worth it and you can show your gp your traces.Mine was fascinated when I took it in on a visit.He even said he would get some to lend to patients at our surgery.Very best of luck.
I think that a Kardia would be a good idea, so that you can monitor things more regularly. Even without a subscription it will say ‘possible atrial fibrillation’.
I suspected A Fib for a few years, as it runs in the family, but it was never caught before I got an Apple Watch. If you are getting AFib then it’s worth getting it investigated further.
hi night owl. I feel for you. I’ve been in your shoes. Get a 2nd opinion. Go onto the nhs websites and check out all of the cardiologist in your area. Read up on them all then when u think you’ve found one that sounds good, ask to be referred to him/her. I did this. I had a new mitral valve this year. Tell me, do you get out of breath? If so then it’s possible you might need a new mitral valve in the future. I had a pacemaker about 4 years ago too. I have a Kardia and would really recommend you get one. Mine only cost about £100 You can take and copy your recordings to your cardiologist. I wouldn’t trust all the readings on a Fitbit My Apple Watch is good too but the Kardia is the best. Good luck
Why do you think 100 pounds or so is expensive for a Kardia? It would be far more accurate than a Fitbit! You just send the reading to the cardiologist if it informs you of a problem.
I think its expensive but £100+ isnt exactly cheap is it. I was looking at the 6 lead for better accuracy and also thinking the subscription would be helpful as that woukd then pick up other rhythms. Lots of people appear to have very approachable cardiologists, having only spoken to mine once on the phone, I'm not sure how supported I would be in sending ECGs to him. So there's a part of me worried about spending the money and it being a waste. I did not know about the kardia before getting the fitbit and obviously I was aware a fitbit may not be the most accurate thing in the world, it is meant to be pretty accurate so I went with it to see if it explained things a bit for me. Which I think it has to an extent. I just didn't expect to have more questions from it and potentially spend more money.
I'm sorry but yes, I do think it's cheap! Particularly if it gives peace of mind to alleviate problems with the most important aspect of your life. Your health!
Well that's good for you then isn't it.I wasn't enquiring whether people think the price is good but thanks so much for your input on that. For some it may not help but instead add to anxiety. I was unsure whether it was worth it given I've already told my cardiologist that I've managed to record a fib on a device I already own and he has already witnessed increased heart rate on the 24hr monitor.
I know you wasn't enquiring about the price but, you did say that you thought they were expensive and I'm just disagreeing with you. The problem is, that unless you go private, you basically are stuck with the cardiologist you are given and will find it difficult and awkward to change. The point I was trying to make was that it's possible the Fitbit is not accurate and worrying you unnecessarily, making the purchase of a Kardia all the more important for your peace of mind.
It just came across as more forceful than a simple disagreement, that's all. It would be a pricey mistake if it turned out that the Kardia was often inaccurate, which is what I was worried about. I am considering getting the Kardia now though since several people have suggested it would likely be worth while as it seems to be accurate and something to be trusted. Also looks to be worth doing even without the subscription so not as costly as I was expecting.
I have MVR, possibly from birth. It was finally discovered in an echocardiogram in May 2020 and deemed moderate. I had bi-annual check ups after that, and that was all. I had a big AFib that did not right itself in Dec 2022 and had to have a cardioversion. I was put on bisoprolol and anticoagulants. The cardiologist thought it possible they'd recur, which they did in July and Sept 2023. Again, neither righted themselves. Both needed unplanned hospital cardioversions. Some people can right themselves but mine were severe and the prolapse is becoming more severe. My bisoprolol medication was increased. My cardiologist said my own AFibs are linked to the prolapsed mitral valve now, and that valve surgery and ablation are required. I was put on a surgical waiting list in Sept 2023, and am in a virtual clinic. I don't know when it will happen. Hopefully 2024. I'm sure I've had "lesser, self-righting AFibs" for years before this was discovered in 2020. I had various tests when I was 11, 18 and 48 and they were all said to be OK to leave it alone. I'm late 60's now. Your cardiologist will help you identify the point to step in I'm sure, but you could ask for a second opinion if yoire worried. It's our health after all. I wasn't able to stand up or speak in any of my last three AFibs, they seem to vary greatly in severity. Sending fellow-feeling and wishing you very well! 🫂
Thank you. It's really interesting hearing other people's experiences. I'm sure you're right, I should probably have some confidence that they know what they're doing though will consider a second opinion if I feel things are worsening and he doesn't show any interest.
I wish you all the best, hopefully you're not waiting too long for your surgery. The wait times for most things are crazy now
Hi Night Owl, its interesting to see other people having similar problems some being resolved while others like yours etc still ongoing. Please look at some of my previous post but like you I'm still waiting for a conclusion to it all since late 2019. Basically in a nut shell I had an irregular heart beat and diagnosed with mild lvh and given bisoprolol for it. Then i had bradycardia so I was taken off the meds but my hr was sometimes still as low as 28. Been in a&e twice once blue lighted from work with a hr of 30 so i had more test done. I was told I had a mild leaking mitral valve too which is being monitored and that I might need a pacemaker if my hr is still low with bouts of light-headedness, being fatigued and just not myself. I was fitted with an ilr (implant loop recorder) to try and find the true cause of my problems but yet I'm still waiting even though I'm symptomatic most days. Sometimes when I stand up my hr with race upto 140+ then drop like a stone to mid 40s making me feel dizzy etc. People have mentioned I might need a tilt table test but it's not happened yet. Sometimes I feel like no news is good news so I wait and see what happens next. Good luck and keep us all posted on your progress.👍
It's frustrating isn't it when you're kind of left in limbo about it it. Definitely sounds like you would benefit from the tilt table test. They've mentioned to me in the past about having a loop recorder fitted but it's not been mentioned again. I was meant to be referred to an electrophysiologist but 5 years on and they still won't do it despite the systems and evidence of irregular rhythms.
The no news is good news is what I think at times too. If they're not wanting to do more than I'll take it as a good thing. Theb my symptoms go a bit more severe and I doubt it again.
Hope you get sorted, it's can't be easy getting on with things when you feel that way.
Hi NightOwl I also have mitral valve regurgitation with 47% ejection fraction, intermittent chest pain, some breathlessness and random episodes of a high heart rate. I only noticed the high heart rate when my fitbit started congratulating me on the cardio I wasn't doing! I've had an echo, 24hr ecg and coronary CT angiogram. The CT scan also showed up some plaque in my arteries. Cardiologist has put me on 2.5mg bisoprolol, 2.5mg ramipril and 40mg atorvastatin. Heart rate has come right down since I started taking them 3 weeks ago. I'm really surprised they're not treating you medically given your symptoms and would try and push for a second opinion if I were you. I can see what you're saying about the Kardia, it sounds really good but may just give you even more anxiety about your condition.
My fitbit does the same, encourages me for the exercise I haven't done. Thank you, I often end up feeling like I'm making more of a fuss than needed but when I hear stories like yours, I feel right to argue my case more.
I'm glad they checked you out and things have now settled for you with the medication.
Thanks again, I am really leaning towards a second opinion
hi I’m having a similar experience in that I’ve been getting random spikes in hr showing on my Apple Watch SE sometimes up 165 bpm theses only last seconds I have no symptoms and wouldn’t know about them if I didn’t check my watch occasionally they’ve only ever happened in the day never at night while I’m sleeping I do sometimes get ectopic beats which I can feel but my hr never races while this is happening I was also thinking of getting a kardiamobile and was debating the regular on or the 6 lead version
I just thought if I'm going to get one, may as well be the 6 lead for the potential of increased accuracy. Seems its worth going for from what everyone has said
The first time I was aware of my pulse rate changes was when I woke at 6 30 to hear and feel my HR at 94 BPM on my Withings watch. I discovered later that my HR had reached 187 as I slept. I have since recorded many high readings, the highest 245 at 10.30 am and fewer low readings below 50. As my ex cardiologist wasn't interested I really don't know what to do. Ian over 80 and sometimes wonder if they think I'm too old to bother with. Family and friends don't agree. I am 30 months after Nstemi and 7 stents and still suffering undiagnosed chest pain, palpitations and so on. I would consider a kardia but would anyone be interested in it. Anyway, HNY to you all and most importantly, a healthier one.
A lot of those watches are unreliable and usually pick up a few ectopics and read them as a very high heart rates the Fitbit being the worst of them for that. I have an apple watch which is much more reliable although I rely on my Kardia for accuracy as most if not all cardiologists acknowlege their accuracy. I would not waste me money on a prescription to Kardia as it would worry you to an early grave. I have never bothered with the 6 lead version and just the basic tells me all I need to know. Yes they are a bit expensive but really accurate and quick to tell any problems with a reasonably good trace. Just my advice for what its worth.
You’re not being a drama queen. You’re just concerned about your heart rate and there’s nothing wrong with that Nightowl. I hope you get it sorted and feel better soon.👍
This is purely a personal opinion.1} if fit bit/watches etc were that reliable wouldn't the NHS be using them more, it would save a fortune on other equipment. 2} paranoia can annoy ya! but seriously these things can cause you to become anxious and anxiety can cause a lot of things. 3} you know your own body, no matter what your watch might say, if you honestly don't feel right then you should take note of that.
I use a Polar H10 chest strap. It's much better than these watches. I've worn both at the same time. My Polar says my heart rate is 60 yet my watch would fluctuate and sometimes be way off.
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