Morning all, hope everyone is well and warm this cold Sunday morning. Just thought I'd introduce myself as I've just recently joined the forum but I'm also on the bhf and health unlocked site too so here's a brief outline of my journey so far. I've been under the cardiologist for 3 years now with ectopics beats and erratic/irregular heart rate etc. After some test the doctor put me on 1.25mg of bisoprolol but after 6 weeks it was increased to 2.5 after a scan noted mild lvh with a wall thickness of 1.3cm. I then had many test over the next few months eco, ecg, 24 hour holter monitor, exercise test, bloods and scans etc. More results came back stating leaking mitral valve /regurgitation and slight leak on pulmonary and tricuspid too. I've struggled with bradycardia resting at 30 at times but also tachycardia over 160 sitting still with erratic irregular beats in-between 3 beats then a pause then fast beats etc. I was blue lighted to hospital from work in February due to feeling lightheaded and low pulse of 30 but sent home after 8 hours all was ok. My symptoms have been being lightheaded, fatigued sometimes feeling like I may blackout also sometimes I get terrible shakes when i have an episode which can last upto an hour. Back in April the cardiologist stopped my bisoprolol as he wants a better picture of my normal resting heart rate which can still be 30 off meds with symptoms too. They have mentioned a pacemaker may be an option but I've been fitted with a implant loop recorder back in September and had an angiogram too but waiting for my results. I'm active physically fit up till 3 years ago 51 year old none smoker and now dont drink alcohol anymore doctors request. Sorry about the essay but hopefully it gives you all an idea of my journey so far.
I'd invest in a kardia ECG. I found the finger ones to be too far out in readings. It also records evidence for ep/cardiology. Your symptoms are pretty similar too mine regarding the lightheaded fatigue. Biosoprosol lowered my HR too much even at a low dose. My episodes normally last about 18 hours average about once a week at the moment.
Hi Tommyboy21, thanks for the reply and i hope you get some answers soon with your symptoms I do have a kardiamobile 6L which was great in detecting svt , bradycardia, tachycardia and wide qrs episodes but since being fitted with the loop recorder the kardia won't work on the 6L settings just single lead readings which must be down to the loop recorder interfering with it. How did you get on with the bisoprolol? Are you still on it?.
Seems totally insane to prescribe betablockers when your resting heart rate is so low. I had a pacemaker this year because my EP was concerned that when my HR went below 60 I started getting some pauses and pre-syncope (feeling faint) . I assume that your cardiologist is NOT and electrophysiologist? Maybe ask for a second opinion.
Hi BobD, I think my previous cardiologist not the present one prescribed bisoprolol to ease the pressure on my heart due to having lvh thickening of the heart wall and ectopics etc. Yes I agree my heart rate dropped to 40 while up and about at work etc which made me feel worse. Since being off the meds it sits around 48- 75 but I still have low episodes like 31 on the 6th December. Unfortunately its just a waiting game for results to come back before any decisions are made. How are you now since being fitted with a pacemaker.?.
No different to be honest as the pre-syncope was so infrequent but my EP said he would sleep better at nights if I had it and after 17 years in his care why would I argue.
Good to hear all is good for you now, im just having daily flutters with erratic heart patterns now going from brady and tachy i just want closure on it all with some idea on their next move so fingers crossed the new year will bring some good news when the results come in. Looking forward to getting out on my mountain bike again to get the endorphins going but I think my motorcycling days are over.
So many differing opinions it makes me wonder what is the right way to go. I have to imagine it depends on each individual. I too have been told I have a pro lapsed heart valve and a thinking of diastolic part of the heart which has caused my blood pressure to elevate. So regular dr put me on Nebivolol to take the pressure off the valve which seems to be helping. I have only had 1 episode of afib since on the medication. It’s been about a month.
Morning, thank you for your reply and sharing your own story so glad everything is under control for you now it must of been such a worry for you. Hopefully I will get some results and an idea of their plan in the new year.Take care
Joy you know how much I think of you anyway and I love what you just mentioned. The heart institute that my doctor is a part of might be familiar with this already I am definitely going to ask. I did some thing on Tuesday that made my heart go crazy or crazier. It wasn’t much I was picking up clothing to put away in the closet and a few other bend over things. Suddenly I could barely breathe and hurt and my heart felt as if it were going to takeoff without me. I don’t understand how this can happen so easily now. I guess it shows how much worse in a year that I have become. This time last year I was moving to Texas I packed up a house I did all kinds of stuff you wouldn’t believe. Then I packed up my car with my cat and big dog. I moved between two different hotels which means packing and unpacking because you don’t leave your life in your car. My final move before hitting the road for Texas next morning I called for a full mover yes I should’ve done it from day one live and learn. The point is I was able to do all of this until that last trip. I went downhill by the time I actually reached Texas thank heavens my cousin had flown in and drove us to Texas. I wonder how many people still don’t know about a fib and blame it on other things like I did? They really need to get it out there and find a way to describe it so it is not confused with other things. So many illnesses sound exactly alike. They need to tell us what the feeling is like Or how sick you feel when you can’t breathe at Cetera make it all about a fib not just an illness because it’s so much more than an illness. This is life-changing and debilitating for many of us. Two years since I had my first event where I hit the floor facedown unconscious. That happened twice that night and I was still so stupid I went to bed and went to sleep. Thank the stars for all of you out here to help us once we begin to learn what this really is
To me it sounds like you really need a pacemaker. Or maybe a different cardiologist. Can't belive nothing is being done for you. I also have a loop monitor, but its only purpose is to monitor, it does not correct anything as a pacemaker would. I've had a pacemaker for about 2 months now, different history than yours, but it's helped a lot. You need help either this!
Morning, Glad to hear the pacemaker has made a difference for you and helped you out a lot. I agree something needs doing but I'm getting by ok, still working but due to the back log of people needing care its unfortunately a waiting game. I'm just not myself some days feeling tired and basically can't be bothered I've lost my mojo in a way not being as active or out on my bike due to ongoing episodes etc. But I actually feel a bit of a fraud to be honest going about my business I feel like I need to stop worrying about it and when you read people's stories on here you realise how lucky you are.
Hopefully it wont be too long before they decide what to do and I can then move forward.
Not being able to go out on your bike at the moment must be a real downer. But do not give up on it altogether. In the end you should get a treatment plan that will enable you to go back to it. My husband lost partial sight in one eye due to an occlusion in 2017. It has recovered somewhat and the good eye compensates but at 78 he is still biking and goes out shopping on it ( weather permitting ) every week. We take longer trips on holiday. You still have many more biking years left once you get "fixed".
Thanks for your advice, fingers crossed i will find out more in the new year. Glad to hear your husband is on the mend and still keeping active putting us all to shame.
He still plays squash too! There the eye bothers him a lot more than riding or driving so he doesn't win much any more. He's 8 years older than me but a lot more robust!
Hi, I was told I may need a pacemaker back in June but they wanted to fit a loop recorder first to get a better picture of whats actually going on so now its just a waiting game to see what it records unfortunately.
My vote would be collect in all the test results (also keep a file and diary) and then go back to one or more cardiologists to answer all your Q's and get advice you are comfortable with. Best wishes.
Morning, im just waiting for my angiogram results it's been over 3 months now but no news is good news they say also for the cardiologist to go over the last 3 months worth of data from the loop recorder to make a decision on what to do next.
that is what my doctors have done quarterly checks unless they are notified by the company who monitors it. It still doesn’t hurt to let your doctor know if you’re feeling some thing and not hearing from anyone. I have found reports falling through the cracks. I discovered that my monitor machine was a 3G just by accident one day. It happened to flip over are usually just keep it plugged in and make sure it says OK. I called the company and they immediately sent out a new one. 3G had been discontinued so no one was keeping track of me for a couple of months after I moved to another state. Then they messed up and never put it over to my new doctors in Texas. Thankfully my Florida doctor stayed on top of it. We can’t take anything for granted when it comes to our hearts or bodies.
Out of my field really but if your mitral is leaky, could you have that fixed? A friend of mine is Australia had it done and is an extremely happy camper. I agree see a cardiologist and EP for coordinated advice. Mitral valve repair is a big deal but I know she's never regretted it.
Yes you can depending on how bad it is but they are monitoring it for now with 6 month check ups to see if it gets any worse then decide.
Pacemaker time?
I had a pacemaker at 52 -( 14 years ) ago after a bout of bradycardia one night that dipped below 30. Once fitted I found my self without the mystery exhaustion on long drives and when on flights.
When working ( until I was 61) I cycled to work most days 20 miles and now I’m in the gym 3 times a week just to keep things ticking over.
I love my passive pacemaker (now on the 3rd after too much of a yoga stretch almost forced no.2 through my skin!).
They get better all the time with day/night settings, they monitor AF episodes (remotely too) and more.
my EP has discussed a possible pacemaker in the future so it is good to see your post about the new improvements. I’m still not in a rush to get it I know he mentioned about every 10 years they replace it. Reading the things you can do makes me feel better if I have to go that route. I won’t be active like you but it’s nice to know someone can be. I am on the other end of the spectrum with tachycardia. Right now it’s from atypical flutter but previously afib. I guess our bodies the side the route they go. I am in the 120s right now getting a cardioversion/hospitalization/new meds tomorrow. With the a fib I was in the 150s. Cardioversion worked but those meds did not keep it. Thank you again for what you posted I have had positive things stated but you are the first one about the new pacemakers 😊
I have read about a latest model that using some form of algorithm can have some limited success in mitigating AF when detected. The success rate quoted was 40%. I suppose it may also depend on how many leads one has on the device. I’ll definitely be asking when I’m due for replacement.
On your 3rd pacemaker! Good to see its working well and you're keeping fit and healthy still, sometimes we just need to get on with things the best way we can...credit to you well done.
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thanks - it wasn’t in my life plan to have one but it’s now part of me.
I would invest in a Kardia and use it no more than twice a day or when you are symptomatic. The saved results can inform any discussions with docs and you can also print reports and make notes which are saved.
I do have a kardia mobile 6L which worked great picking up episodes of bradycardia , tachycardia, svt and PVCs etc but since being fitted with the loop recorder it doesn't work on the 6l settings anymore only the single lead option which is annoying so it must be interfering with it.
I've reset my kardia and its now working again think it just needed a reboot 👍. Been feeling a bit off today so just ran a test back to being bradycardia again for the moment. I can never read these things though.
Sorry, what do you mean by "just needed a reboot"? Do you mean your Kardia App was out of date and you had to update the App? or perhaps you had to uninstall and then reinstall the App?
Hi, I'm using an android phone so I went into settings on my phone, apps,kardia,storage then cleared out the cache file but not my data otherwise you lose everything etc. I also signed out then back into my account and it worked. Hope it helps.
Yes, thanks for update. I'm not sure why either of those moves would make a difference with your problem, but I'm pleased it worked, and I will keep your answer in mind for future reference.
Of course, as I don't pay for "advanced determinations", if I "log out" I will lose all the previous ECGs I have recorded and stored in the App on my android phone. (That's just how it works)
But as long as I SAVE all my ECGs to my phone's FILES folder, and/or send an email with each ECG to myself, then I will have copies if I ever need to "log out".
I do the same too i email the ECGs to myself then save them in a folder for future reference. I'm not sure why the kardia stopped working after my implant but since cleaning the cache file etc it now works.
welcome I am relatively new myself it’s a great group here. We are all different however chances are pretty good you’ll get an answer to at least put you at ease about different things. They have helped me so much getting through having a fib and different treatments.
I have the loop recorder implant and that’s what finally gave answers within two weeks. It took almost 8 months because a fib is sneaky. If you’re not having an event it doesn’t show up on an EKG. The loop recorder caught it at its worst and showed almost 300 events within a two week period I was immediately scheduled for an ablation. It’s frustrating when you know how bad you feel and yet there’s no answers. I hope you are at least on a blood thinner. Even before answers I was on Xarelto as well as Multaq and Metropolol. I was not having anything like I have these days. It’s bad now. Back then though I had actually blacked out not once but twice in one night. I was injured also and actually lucky to still be here. When I had a spell for me I noticed a heavy feeling in my chest but also lightheaded and could not see clearly out of my right eye. It told me to immediately sit down. I am so glad they did the recorder on you so fast. I don’t know if they have you hooked up so your doctor gets reports especially if there’s somethings serious. My end get a report once a month but in the case of urgency they get a call as well as me. As I said afib is sneaky. I know when I am having an event but not everyone gets the same feeling. We are all different so remember your doctor is the number one person for anything important.
Hi DawnTX, thanks for the reply and sharing your story too it must of been frightening blacking out twice in one day never mind once. Did you have the loop recorder for 8 months before it detected the afib over a 2 week period? Since having my implant the bradycardia has subsided slightly but having more PVCs and tachy episodes. I have also used the activator many times during the 3 months some days 4 or more times. The base unit downloads data from my implant and apparently sends it to the hospital for them to look at also I had a 3 month remote download last wk planned but I'm not sure if it went ahead with them being on strike as I've not heard anything yet. With regards to medication I was on bisoprolol but that was stopped in April so they can get a clear picture of what my resting heart rate is drug free but its still low or high at times. I just feel like I'm having lots of episodes slow at 30bpm or fast 160+ while sat still , sometimes lightheaded and drained so I have a little rest for about 40 mins which i call my recharge time then I'm ok again. I just think its strange that after 3+ years of investigations and 3 months since my loop recorder was fitted im still no clearer on what's happening next surly the implant would of picked something up by now? I know I'm not myself and the events I've experienced have sometimes scared me a little also my wife is a nurse and even she said my obs worried her at times so its not just me feeling it other people can see it too. We wait and see.
Um, that's kind of a low heart rate. Don't know why doc would Rx beta blocker for you. Has doctor said anything about a pacemaker? What country do you live in?
The original cardiologist prescribed the bisoprolol after test showed i had mild lvh to help ease the pressure on my heart. Unfortunately my resting heart rate dropped to 28 at times but it was stopped in April so they are now looking at possibly fitting a pacemaker depending on the loop recorder results. Symptoms com and go like yesterday my heart rate dropped to 40 making me feel lightheaded and fatigued, and I live in the uk.
Has your doctor ever mentioned a pacemaker? The bradycardia you're having is not enough to adequately perfuse vital organs. I would think your doctor would want to do so something to help with this very soon.
Understandably they want to gather more information before a decision is made but yes they have mentioned a pacemaker, also due to my age they are a bit reluctant to fit one just yet only as a last resort. Unfortunately it's just a waiting game until my angiogram and loop monitor results come back then hopefully we will have an idea on what to do next. I actually feel ok most of the time but some days or wks are rough with a low hr and fatigue etc which can wear you down. Hopefully the new year will bring some news.
I also have the loop recorder how often do they read yours? They can bring you in and have it read anytime. When I had no issues going on following an ablatement it would be every three or four months. If the company monitoring notify the doctor they would bring me right in and also do a reading not just relying on the company. If it were urgent you would never have left the room where they did the angiogram I don’t think I know my doctor would not release me. Everyone is different at least by a little bit. You can always call and ask a question hopefully. They should tell you when to expect results
I've had my loop recorder for just over 3 months now and it was due a remote download about 2 weeks ago but I'm not sure if it went ahead ive not heard anything or had any results back from that or my angiogram.
I have a Biotronix which is monitored however they only sent a report to the doctor once a month. If they get anything crucial they do notify them right away. That is how I ended up with one of my ablations. I was unaware I was back in a fib of course this was in the very beginning after being diagnosed. Otherwise I would be in every couple of months where a technician from the company would download my information. It’s a simple procedure they just take a thing that looks like a horseshoe And put it around your neck so it lays over where the monitor is. It prints everything out right there which goes immediately into the room with my EP. As I said earlier they really should tell you when to expect your results. The remote should be going on constantly. I tend to forget I have it except when it gets itchy. You have to ask questions and be your own advocate.
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