So my loop recorder showed I had two episodes of NSVT (non sustained ventricular tachycardia - coming from the ventricles) yesterday. One was 6 beats another was 11. I was sitting playing on my phone when my vision got blurry I felt a rush and my heart went irregular. It stayed elevated (high 90s) a bit after the episode. I marked it on my implantable loop recorder, uploaded it to the system and called the on call doctor. while I was on the phone with the on call doctor I had another episode marked it and uploaded. The on call doctor thought it was all PACS since I do have atrial tachycardia but also felt there were some PVCs. She couldn’t decide though. So we waited for my EP to look a them today and he confirmed that there were no P waves and where it came from in the axis(?) that it was ventricular. Im freaking out. This only happened one other time before (that was recorded) a year ago- 14 beats and I haven’t had it since. What gets me is I went from not having this crap to having it. I also just started synthroid last week and my thyroid is a mess but they feel it’s not related. My EP says right now we will carry on as we have been he’s not too concerned. I’m on 200 mg of toprol XL brand that I take throughout the day- yes it’s strange but it seems to work better that way- and we will see if it happens against. I had a normal cardiac MRA last May 2019 and they just scheduled a new echo. He said I could start flecanide but it’s still optional at this point unless I have another episode or so.
So I’m freaking out. The fact I didn’t have that many beats and had symptoms scares me. The fact that I may have to start the anti-arrhythmic terrifies me as well. The fact I’m having NSVT for no reason at all scares me! I guess my fear is it getting worse and not stopping and something bad happening. I already have other arrhythmias I deal with. I don’t get why I also have this one. Sorry if it’s rambling I just found out and I’m pretty scared.
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Tiffw28
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I just had my loop recorder placed on Wednesday. I’ve been having runs of NSVT also mainly at night in my sleep. If they don’t wake me up I don’t feel them obviously but when they do wake me up or I’m awake they kind of freaked me out. They feel like a quick wiggle jiggle. I’m assuming that’s what they are. I have other things too so it’s hard to tell the difference. But this doesn’t feel like pvc...but it could be an SVT...ugh I am just ready to know. So if you hit your button on your loop recorder how do you call to check and see what it was? I noticed you said you called the doctor on call? Today is Saturday so even though I’m curious about what it is ..... if it’s something dangerous they contact the doctor? I’m so new at this. Sending you prayers and hugs. Message me anytime.
I’m so sorry you’re dealing with this! But I totally understand. Have you ever had confirmed NSVT or are they thinking you may have it?
So the way my doctor office has it set up is if I have symptoms, use the patient assist and it feels urgent they have me manually upload and contact them. If they aren’t in the office the on call can pull the monitor and check it. Now if I don’t feel the need to to contact them I’m suppose to manually upload after 3 times using the patient assist since it only holds four recordings at a time. Now each doctor office is different. Every night regardless of how they do it, it does upload to the Medtronic system and your office can see it when they check it so if you are experiencing things you don’t know about it should still catch them and upload. Some doctors also have it set where your patient assist marking will upload every night so manual uploads may not be necessary if you aren’t marking a lot. Ideally The office should be reading your tracings everyday except weekends. They will contact you if they see something.
But with all that said you really should have a conversation with them on how their office handles the machine. Some good questions would be what are my settings, how often do you guys check my recorder, what should I do if I mark symptoms, do they want you doing manual uploads and if so when, when should you contact them if you feel something, when do they contact you etc because I’ve seen offices do the bare minimum and others like my office go above and beyond.
I hope this helps and I’m always here to chat there isn’t a lot of us NSVT people on here most have atrial issues like afib, svt etc so it’s nice to chat with people who understand.
Hi TiffI was diagnosed this weekend with NSVT. I’ve had heart flutters all my adult life (now 48),but only recently told my GP after getting chest squeezing sensations.
They did a 7 day event monitor and found it.
I had a fainting episode at work on Friday (hadn’t been given the result of monitor yet) -rang my GP who sent me straight to hospital.
Had another (possibly) episode whilst in there that made me feel faint but I wasn’t hooked up to a monitor at that point.
It’s not unusual for me to feel the fluttering several times per day, though doesn’t usually make me feel ill.
They have started me on Bisoprolol. I also bought a Fitbit sense yesterday for a bit of reassurance but obviously having read up a bit over the weekend I now understand that this could cause a sudden cardiac arrest.
My echo and electrolyte balance was normal, which is reassuring... but obviously I’m scared.
I can’t find much advice or stats online about likelihood of this getting worse so just looking for advice and reassurance really.
Hey! I’m sorry to hear about your diagnosis! I totally understand how you feel I still live in fear and it’s the worst. Do you have a cardiologist (electrophysiologist would be even better) and if so what do they think of all of this? If not you need to get into one. Besides a Holter what else have they ordered or recommended? I would push to get a implantable loop recorder -google it. It’s essentially a event recorder that gets placed into your chest just right under the skin and it’s nice because it works for about three years. It’s constantly monitoring and will get triggered and record if it meets the parameters or you trigger it. That’s actually how I was diagnosed. I would also ask to get a cardiac mri and do genetic testing for arrhythmias. When you had the NSVT how many were there and how often?
They only caught a non sustained run on the 7 day loop - just one run of 12 beats at 150bpm. Though I have been having them since I was about 17, I just didnt realise I needed to tell someone. 🙄
Suspected sustained episode this last friday landed me in hospital.
Came home Saturday with bisoprolol and then was readmitted yesterday after a giddy turn.
(Pretty sure that was the bisoprolol dose being a bit high.)
Am now on MAU awaiting transfer to Cardiac telemetry bed.
They are planning a CTCA and an MRI, and reducing dose of bisoprolol.
So they are being very thorough, though it is scary knowing any time my heart does a flutter, if it doesnt stop after a few seconds I'm in trouble. X
Had a little drama on weds feeling giddy/ chest pressure. Ended up in A&E who insisted on admitting me, inspite of normal HR.
Cardiologist said admit for telemetry and CTCA, even though once they stopped my bisoprolol, the symptoms stopped happening.
Sat on the MAU for 48 hours waiting for telemetry / CTCA before discharging myself.
I will review with GP on Monday but given that 99% of the time my resting rate is between 60 - 80, can't see how bisoprolol is a clever idea.
HR in hospital was consistently in the 40s until drugs wore off, when it went back up and I now feel fine.
They didn't expect the CTCA to show anything and I'm 48 with no other risk factors so think I will propose self monitoring for a month or two and then revisit.
Will probably take that long for outpatient appt to come through anyway...
Well I’m glad everyone is taking this seriously! It really is scary and not a lot of people deal with it so It’s hard to find others to talk to. Just know I’m here to chat anytime! I often feel very alone because of it. Once I found out what it was I got very depressed because it opens a whole Pandora’s box. Since It’s more common for people to deal atrial issues like afib and SVT-which people often confuse with NSVT but as we know it’s not the same, it can be hard finding the right Info on support boards or finding others who actually deal with it. There’s a few of us on here but not many.I know Beta blockers can be a real pain especially at first! I started out low and slow and now I take 200mg a day. It’s a lot especially since I already have low blood pressure. We counter some of that with salt tablets which are gross but it has helped. I actually take my beta blocker a bit unconventionally, my extended tablets (I take toprol XL brand name) are spread out throughout the day. Doctors who don’t treat me get very confused and try to tell me that can’t be but it is! Ha! Its not really heard of but it works for my body thankfully. But I know for some people beta blocker therapy is a no go! They can be very hard to tolerate. Hopefully they can figure something out for you.
So do they have any idea why you are passing out? Have they discovered any kind of structural issue that could be causing it? I know sustained vtach is something they usually move quickly on and have to treat differently so hopefully it’s not that. Nsvt in a structurally sound heart isn’t as bad- well that’s what they have drilled into my head at least. It still scares me though because our hearts shouldn’t be doing it at all you know! Do you have any other types of arrhythmia? Besides my NSVT I also have some atrial issues like atrial tachycardia and I got PACS often. So it’s hard for me to tell the difference between if it’s the top or bottom when something happens because they do feel some what similar. Thank god for my Loop recorder or I would have no idea what’s what! Have they discussed doing any other types of treatments?
I don't know if I have any other arrythmia, though my HR is still frequently low 50s / high 40s, even now off the bisoprolol for a week.Im waiting for an appointment with the arrhythmia team, who will then do tests I guess.
Felt a bit funny a couple of times this week and using a phone pulse checker, watched it go from 53 - 112 and back again in the space of a minute so something isn't right.
Hey! Has your heart rate always been low or was that something that happened just after the medications or you just noticed? I know mine fluctuates like crazy. Prior to being in beta blockers just walking to the bathroom and my heart rate would be 150. It was insane. I would have moments where it would just shot up for no reason then come down and that went on for years. I know over the decades- I just turned 40, my heart went from just inappropriate sinus tachycardia with occasional PVCS/PACS to full on SVT and atrial tachy and now I also have these runs of the non sustained. Ugh! I do have POTS and a few other things so that explains the high heart rate until it was controlled about 8 years ago but the rest of the arrhythmias we have no idea why. Especially the NSVT. That came on in the past couple years out of the blue. I’m structurally sound but It’s frustrating and scary. The atrial stuff doesn’t scare me at all and it’s easier to treat but the ventricular stuff obviously worries me with good reason and that’s a whole different world.
So how soon are they going to be able to get you in? I really hope they are making it a priority. The biggest thing is going to be finding out if your heart is structurally sound or if you have any genetic conditions. I know you said your echo is good which is great but it’s only a part of the picture. A cardiac MRI is definitely best. I’ve even had a cardiac PET scan just to make sure and cover all bases. So make sure you really push if you are having Nsvt. While I’ve always been told and reassured Nsvt In structurally sound hearts Is better than if you have any type of damage or issue it really doesn’t make me feel any better to be honest. Living in fear is a real thing and it sucks. I am jealous of those who handle it all well!
I believe a slower heart rate is a recent thing for me, and it was made worse by the bisoprolol.I understand about the fear thing. I felt a bit unwell today, popped the oximeter on and my HR was 120 just sitting at my desk. It went on for about 25 seconds then dropped down to 70s. I was just starting to think I would need to call someone.
I have the direct number for the coordinator for the arrythmia clinic so if I don't hear anything in a couple of weeks I will call again.
Yes echo was fine but ejection fraction was a bit low at 55% (I'm only 48) - my GP says that may have been because I had just had a short episode of VT .They did mention a cardiac MRI in the hospital and also a CTCA, so I'm hoping that will show nothing much and I'm just a medical mystery 😉.
I would definitely keep pushing them to get you in as soon as possible. I have found the only person who will really advocate for you is you so it’s best to just “be that patient” even if you don’t want to be because otherwise they take their sweet time! No need to suffer if you don’t have to.
I get the medical mystery thing hahaha, all my tests besides my loop recorder which found my arrhythmias, have been normal which is great don’t get me wrong but it also means no answers which is frustrating. It’s a double edged sword. It’s like you don’t want those tests to be abnormal but you also want to know why it’s happening!
So did they end up doing the tests in the hospital or they plan on doing them
for you? Because either way that would be great for you. More reassurance even if they are normal.
That’s great to hear though! anytime someone has NSVT especially if it’s suspected you may be having sustained they tend to move quickly. Have they put you on a longer monitor or anything so they can be watching what’s going on for a longer period of time?
Only a vital signs monitor whilst in hospital but it wasn't recording or anything. I was keeping an eye though and apart from a few ectopic (?) beats there was nothing going on..HR veered between 43 and 80bpm at rest - but of course that wasn't witnessed by anyone. 🤦♀️
I have had the heart flutters all my adult life but in the last few months I started getting some chest tighness and my HR drops to around 50 - 55.
Nothing major I know but concerning. It also randomly jumps to around 100 at times.
We will see what the CT shows and go from there I guess.
I have requested a diazepam script from my GP for the scan as I'm not great with enclosed spaces.
That’s always the case I swear. They never see what you want them too. You should google Medtronic implantable Loop recorder I think you would be a good candidate for it! Bring it up to your doctor if it’s an interest. After decades of saying “hey this is what’s happening” they finally saw it after I got mine implanted!Good luck with the MRI! The Xanax will really help. I was so scared the first time around but now I don’t even need it so you may very well get to that point as well. Let the technicians know you are really scared and normally they will work with you and talk you through it a little better. What I have also found that helps is when I get in the machine I keep my gaze straight forward and out the machine not up. Because up will only make the walls feel like they are closing in more. I also count to 60 (one min) and repeat the counting during each segment. Often they will tell you “ok this next part is 3 mins” and by counting in 60s it helps me not focus to what’s happening but also I know how much longer I have or how long it’s been.
Do you girls know from what part of the heart are your pvcs comming?
I have left fascicular PVCs. They are not the most common, but from what I read RVOT pvcs can come with NSVT in normal hearts and means nothing serious.
Hey! Sorry it took me so long to respond I never got the notification. So no I don’t know why, I just know it happens and it scares the crap out of me. It’s very disruptive. Hard to really live a normal life without being scared all the time. How did they figure out the cause of yours??
You could ask to your cardiologist where your PVCs are comming from (right/left ventricle outflow track and left fascicular are the most frequent on healthy hearts). I do have POTS too and my PVCs are more frequent when my POTS flares up (premenstrual and during mens). Do you have mitral valve prolapse? It can cause PVCs.Mine are little better these days but I feel some when I try to do some exercise (upstairs o going uphill), and it scares me. Does it happen to you or only feel them at rest?
Hey! So your English is great no worries! And I know my pvcs have been close to the atrium, they look similar to my atrial tach, when they see them on my implantable loop recorder but they haven’t said anything more. They said without more leads they wouldn’t know for sure and my loop recorder is only one lead. Not sure if you are familiar with that device. And no prolapse, I’ve had a bunch of tests even genetic and they aren’t sure the cause.
Mine are very simmilar to my sinus rhythm, quite narrow for beeing a pvc, they doubt they come from the fascicles or the papillary muscles. I recorded some on my apple watch (lead I: negative qrs like 100-110ms). Do you have any pic of yours? They might be the same type of pvcs! My EP told be they where bening and sometimes came like NSVT 👀
I don’t have any strips. Although my doctor has them. And that’s interesting with the Apple Watch. I haven’t purchased the new one with the EKG capability. How is it? Does it really capture the beats? Maybe I should buy it. And yeah I’m wondering if it could be the same. What’s your longest run of NSVT? How did they confirm it again?
They did not catch NSVT, it was my feeling (very rapid fluttering lasting 4-5 seconds). It happened only once, last month. Since them, I recorded some PVCs on the apple watch, it’s worth it.Do you feel them only at rest or when your HR goes up too?
Oh so you aren't officially diagnosed with NSVT then? I know you know but for those who may read this who don’t -NSVT is 3 or more PVCs in a row so single PVCS arent nsvt. I was diagnosed by my implant and and have had it quite a few times now over the past few years unfortunately.
So when I have an episode my heart goes completely irregular, I can feel it for as long as lasts and it’s terrifying. I don’t feel the racing really because the beats are so off you can’t tell what it’s doing. It’s sucks because I also have atrial tachycardia which feels very similar so when it happens I never completely know which one it is until they look at my monitor and the doctors tell me.
So I was thinking of getting the watch so when I do have an episode I can see it right away although my doctors office is awesome about getting back to me right away as long as it’s not a weekend but even then they have been available at times. Do you have to do an EKG on the watch for it to take the strip or does it automatically do it?
You just have to put your finger pressing a buttom and you can see your heart rhythm. If you push for 30 seconds you get automatically a one lead ECG on pdf (lead I). I find it very useful and gives me some peace 😄How you doing now with your PVCs?
I’ll have to pick it up! It’s awesome how much they can do now. And it’s been better had a 13 beat run yesterday afternoon. Faster and wider than usual. So annoying and scary.
You should ask your cardiologist what is tha origin of your pvcs! There are a couple of idiopathic pvcs that come from an specific site of the ventricles and sometimes they provoque benign NSVT ☺️
Hey so yeah my Pvcs are close to my sinus node. When I have runs they can almost look like SVT because of how close it is. So they’re not far up in the ventricle. Thankfully my electrophysiologist is one of the best in my state and I also have another EP at a major top hospital near by as well. So I have top care it’s just the point that a lot of NSVT is idiopathic when there is no structural damage and it’s rather frustrating. They believe my nsvt is low risk but knowing your heart does something that can take people out doesn’t make you feel so great.
So I’m curious with your condition have you ever had diagnosed NSVT? Like full runs? Because people can have a ridiculous amount of PVCs and never have NSVT.
Glad to hear you are in good hands!I have not been officialy diagnosed with NSVT, it was just an episode I had last month in which I felt a rapid run of PVCs that lasted like 4-5s.
I wore a 24h holter and I had like 600 PVCs (they didn’t tell me if all were single or not) and 50 PACs.
My PVCs are quite narrow too, so they think they come from the fascicles or papillary muscle (less probably).
Sorry for asking again, you said yours come from near the node, so they are left sided too?
Oh gotcha. And honestly I can’t remember, they just know round about where they are since they haven’t actually mapped them with an EP study to pin point the exact location. They just know from my tracings on my implant they are higher up in the ventricles. My PVCs are usually just slightly wider but this last run was wider than usual also faster so that scared the crap out of me. I was more symptomatic than I normally am as well. Again not a pleasant thing.
I do get regular PVCs and I also get PACs. I’ve had so many PACS in a day they actually thought it was having bouts of afib. I wasn’t thankfully. I get atrial tachycardia as well. My atrial tachycardia feels similar to my NSVT due to how close the irritable spots are apparently so that causes some stress. It just sucks because I have a few arrhythmias so I tend to have some kind of symptoms everyday. It’s very hard to cope sometimes.
No it didn’t. I have echos yearly. I’ve also had a cardiac mri, a cardiac PET scan. Genetic testing. All clear. My NSVT is idiopathic meaning they don’t know the cause. It happens.
I’ve also had pots all my whole life and it wasn’t till I started toprol xl that it calmed down a lot. My heart rate would just be 160 walking to the rest room. Have you discussed medication?
Are you seeing a cardiologist or an EP? If you are worried about the amount of PVCs you are having ask them to investigate further. Google Medtronic implantable loop recorder. That’s what I have and it’s what finally got me my diagnosis. Don’t forget People can generally tolerate a lot of PVCs with no issue usually it takes up to 10,000 a day before they start thinking about ablations etc. If you have PACs some of this fluttering you’re feeling could also be that. If you had a real episode of NSVT you would most likely know. I’m 40 and have been dealing with pots, arrhythmia other health issues my whole life and I didn’t start having issues with NSVT till about 2018. It felt completely different than what I had ever been dealing with. When I described it to my EP he was the one who said it sounds like NSVT and I needed to get the implant. I would def push on further care if you are questioning because you need to know for sure.
Thank you very much for your advice.My cardiologist is an arrhythmia specialist and I think is a nice guy.
I am going to have a 7 day holter next week, I hope to get some answers to what is happening to me. Until 4 months ago I have not felt any arrhythmia (I am 32 years old), I could run in the mountains without any problems, and now when I walk uphill I have a PVC. It is as if I have aged 30 years all of a sudden.
Anxiety is not helping me either, I have the feeling that when I start to move I think I'm going to have a PVC and I cause it myself.
I have tried beta blockers but my resting heart rate went down to 35 and I was getting dizzy, it is possible that after the next holter I will start taking diltiazem.
Ah very good! Glad to hear you’re seeing an EP not just a regular cardiologist. Cardiologists are great and all if you have structural issues but electrical not so much.
So you’re having PVCs on exertion? Do you also ever have them at rest? It’s good you’re going to have that 7 day monitor then. When you’re wearing make sure you get up and move some while you’re on it so they can see what’s happening. I know before I got my implant and I would wear the monitors a few times a year I would screw it up because I wouldn’t get up and move around because of fear! I totally get how the anxiety is. This has completely changed my life for the worse. It’s crippling! I went from going to the gym day for two hours, being extremely active, happy and full of life to sitting in a rocking chair like an old lady scared of every beat because I’m so terrified what my heart will do. So trust me I get it! And honestly I have even spoken with numerous therapists and while they say yes anxiety is playing a part emotionally, our reaction to this is still completely appropriate even if doctors act like it’s not or want to write things off as anxiety. I think often they forget quality of life matters! My doctors are great and all but sometimes I think they get more caught up on what they know, and how they look at our issues medically and not how we are mentally responding to it. Patients with arrhythmias tend to have worse quality of life because our issues are so disruptive!! You never get a damn break.
The genetic testing I had was a specific cardiac panel. I’m not exactly sure what it’s called I just know they look for genetic arrhythmias that could be life threatening.
I’m sorry if you answered this but have you had at the very least an echo?
Oh I wanted to mention I actually started with the diltiazem before the beta blockers. It helped me with the inappropriate sinus tachycardia/POTs a bit but it did nothing for my atrial tachycardia (I wasn’t really having issues with the ventricular stuff yet) I think at that point though I just wasn’t taking enough. I will say it didn’t impact my blood pressure or give me any other side effects so it may work really well for you. The beta blocker I’m on, Toprol XL, we had to go very slow with and I also have to taken sodium chloride tablets (salt tabs) with to keep my blood pressure up. It definitely made me feel horrible at first that’s for sure. Sucks that it knocks your HR so low because it’s a great med.
Hi Tiff, I'm sorry to hear of your worries. I have NS ventricular tachycardia too and was being treated on bisoprolol initially and then flecanide was added at a later time once heart structure was confirmed normal. Looking back, this worked really well at reducing the problem but I did have some blurred vision and tiredness with the flecanide. I can appreciate how unnerving it can feel.My EP offered ablation but this didn't go well and ended in a trip to theatre to remove a stuck catheter. In removing the catheter, they tore the tricuspid valve and I'm now waiting for a repair/replace as it's severely leaking. I can't take flecanide now but manage on the Bisoprolol and recognising and responding to triggers (time of the month, stress and anxiety etc)
It's incredibly hard to differentiate between anxiety and the PVCs because they go hand in hand and one sets off the other! So I feel for you there. I find deep breathing, regular exercise, music and gaming really useful in reducing my stress and anxiety and the VT. Wishing you well
Thank you so much for writing me. I have been so desperate to find others like us. I find those with NSVT/VT aren’t really on the suppose boards that often. So it’s lovely and extremely helpful to find someone who deals with these issues.
Wow! I am so very sorry to hear what happened. Good grief how horrible. I hope it goes well when you bet it repaired! Talk about adding worry to something that already causes worry.
It’s interesting you mentioned triggers! I keep a symptom journal and I have noticed that certain things seem to set it off. I have also found out some doctors don’t believe certain things play a factor at all like hormones, emotions etc. Who knew it was controversial! Lol. Personally I have cut out a lot of foods, activities and as soon as I think I have something figured out boom a I get a run. Ugh. My last one two days ago was my worst to date. Normally my NSVT is slow and not so wide. It’s always been 120- 140 bpm. not even fast enough to trigger my loop recorder on its own but this episode was up to almost 200 and wider. It also made me lightheaded, almost like when you stand up too fast (except i was laying down) and think you could pass out. That was the first time it’s ever happened. So needless to say that scared me badly and it’s very disheartening.
If you don’t mind me asking how did they find your NSVT? Do you having longer runs? Do you still get it? Are you symptomatic with it? Sorry to hit you with so many questions! We have mentioned flecinade here and there but the possibility of it also being a pro arrhythmic scares me! So it’s good to hear you had some success with it. That makes me hopeful. I’ve been on 200mg Toprol XL for about 8 years now although I’m not sure if it’s helping the ventricular stuff but it’s helped the atrial issues a bit. If it is helping I would hate to see what my heart would do without it!
Hi Tiff, no worries, it's good to connect. I'm glad you're feeling better speaking to others with similar experiences, it can be helpful to know we're not alone.I'm really surprised to hear that some doctors are not associating triggers with episodes, it makes perfect sense to me but my EP has always spoken about it so I guess I'm a little biased!
That does sound frightening, I have had a similar experience and although my EP said it was VT, I'm quite convinced it was heavy stress. I found I had to elevate my legs to keep me conscious until the feeling passed. It's very unnerving, I feel for you.
It was actually something I noticed myself and as a smoker at the time, I thought no GP will take me seriously so I quit first. That didn't resolve the issue so I told my GP and we went from there.
I still get it and now I can no longer have flecanide because my heart is damaged, however I've only ever had the blackout feeling twice thankfully. I get by with the Bisoprolol really
So as far as treatment I take 200mg of Toprol xl everyday and I have a loop recorder that they monitor my arrhythmias with. Thats actually how they diagnosed the NSVT. Some days I feel ok other days I feel horrible. I think mentally it’s taken more of a toll than anything. It really has impacted my quality of life. I haven’t been the same since I was diagnosed. I was full of life before and now I’m not. It’s a shame because since they don’t know why it happening so there’s no way to fix it so I just have to hope everyday I don’t have a run.
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