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Frightened Beyond Belief - PCVs + NSVT
I'm new here. I'm 46, female, and I've never had heart problems. I exercise daily (running, paddleboarding, hiking, walking, etc) and eat a heatlhy diet most of the time. My doctors have always raved about how strong my heart is. All that changed a couple weeks ago when I went to the ER with heart palpitations. They picked up PCVs and periods of non-sustained ventircular contraction. They released me that night and told me to contact a caridlogist.
With no previous history of heart trouble and a mostly healthy family (dad has some hypertension), the doc wasn't too concerned but hooked me up to a Holter Monitor for 48 hours and had me schdule an ECHO Stress Test. I'm still waiting for the stress test appointment (the waiting is stress enough!), but the holter monitor came back with 3% PCVs and this statement...
"There were 8 episodes of wide complex ventricular tachycardia, primarily occurring during sleeping hours (01:45-03:05). The longest episode lasted 4 beats. The fastest episode had a maximum heart rate of 158 bpm."
How dangerous is this??
I ask because my paperwork from the ER says ventricular tachycardia can cause sudden cardiac death.
I'm scared to death (maybe not the best choice of words) that my heart is iterally just going to stop in the middle of the night. I still exercise at mostly my same exertion level (no problems) but I don't trust my body anymore. I can barely sleep. I'm afraid to eat anything "bad" (cheese, eggs, wine). I am in tears half the day (right now in fact) because I'm so scared.
Everything I read says PCVs are usually benign and my doc doesn't seem concerned, but that does nothing to alleviate any of this perpetual fear especially when there are reports saying VT is life threatening. I'm at my wits end. The lack of sleep is driving me nuts, I've sent a message to my doc's office, but I'm just wondering if anyone else out there has had this and lived to tell the tale.
Also, what's "normal" for PCVs. The literature makes it sound liek just one big thunk every now and then (which I do have), but when these things happen at night, it feels like they're lasting for 1,2,3 hours at a time. I've tried the vagus nerve "tricks" to stop them, but it doesn't do much good.
Ralaz, September 3, 2019 9:14pm EST
Boom Boom Tam-
I have PVC's and NSVT too. You are doing all the right things and know you are taking awesome steps by going to the cardiologist! I know this is scary stuff but I want you to Breathe through it! The docs will look for things that are causing the VT, such as damage, disease, hereditary things. Some people just have Ventricular tachycardia like myself. In this case, it is just considered benign. Stay away from caffeine, decongestants and diet suppressants as they can cause ventricular tachycardia.
Often times the docs can control the rhythm by suppressing it with medications that make your heart go a little slower. They can do an ablation if you are getting too many runs or they become sustained. So far you are doing well, just take it one step at a time and do not allow this to overwhelm your life. It is normal to have some anxiety with this, but do not allow it to consume your life. If you need to call your Primary Care Physician and ask for something for the anxiety while the docs are sorting through this. It's OK! This is what taking care of ourselves is all about!
A trick I use when I'm feeling anxious is this: Find 5 things around me I can see (name them), then 4 things around me I can touch (name them), 3 things I can hear (name them), 2 things I can smell (name it)l, and 1 thing I can taste (name it). Taking your mind to a different place can help quiet the fear. I have also found that yoga/meditation really helps me too!
It takes some time to go through all the testing. In the meantime, you can take steps to educate yourself. There are very good websites from the Cleveland Clinic and Mayo Clinic regarding Ventricular Tachycardia.
Hang in there and let us know how you are doing! You're not alone!
You VT buddy!
BoomBoomTam, September 3, 2019 10:26pm EST
Good to know the VT isn't an immediate death sentence. That might allow me to get a little bit of sleep tonight. Right now I'm in between Primary care doctors (of all the times fo rmy doc to retire!) so I don't have any resources right now to get help. It's just so scary after never having any trouble before and thinking I'm doing everything "right" healthwise. I feel like the lack of a support group or knowing who to call/what to do only makes this worse, but your words are helpful. And I'm defintiely trying you anxiety focus idea tonight if I wake up with the boom boom flutters.
I have been trying meidtation/yoga/tai chi and have cut WAY back on my caffeine. Eventually it's got to help, right? Also, meds are hard for me with this because my normal heart beat is already quite low (all that stupid running) and slowing it down even further is worrisome.
NewPacer73, September 4, 2019 8:25am EST
Your story really touched me. I think cardiac conditions cause great stress and stress doesn't help with cardiac issues, as we all know. I want you to know when facing these kind of challenges, I get panicked too. I use the patient portal to let the cardiologist know my concerns and I'm lucky, she responds totally and quickly. But, in your case, I think I would call and get on a cancellation list for appointments and push them to act faster. I don't have your specific set of problems, but very familiar with PVCs as a "pacer". Know this. They have a way to handle your problem, once they focus on what's going on. See if your area has a "Mended Hearts" group (national organization) and get to a meeting. Those are people who have been through everything, from complete heart transplants to every issue you can imagine. They are all doing well but have all faced those scary times. I decided to use the meetup.com platform and create my own support group for cardiac patients. So far, it's me and the guys! Where the women are, I don't know! Cardiology has made great strides in treating your problem, but are less capable in handling the emotional side effects of our conditions. Keep posting here. Keep us up to date on what is happening. Get pushy. Your comfort level will increase with learning what's available, getting some support from people who have walked that road, and regaining control by making your team more responsive, more quickly. The waiting for things to happen was the worst for me. I arrested three months ago, so I already died. I am more active and confident now than I was dealing with the issues that led up to the arrest. Last night at the Mended Hearts meeting, a young woman with a total heart transplant was telling me of her plans to sky dive. Miracles abound. You MUST have confidence in your team. If they are unresponsive, make the changes you need to get the services you want to get quickly. Took four cardiologists for me before landing with one who is very competent, current and responsive. Hugs from me to you. You will be, like me, on the other side of this with time. And back to being yourself soon. Just know that there are millions of us on the "other side" of where you are now and probably had much worse scenarios. It's normal to be scared. Anxiety is normal. Just take control and get what you need when you want it. Take charge. It's time.
NewPacer73, September 4, 2019 8:30am EST
@Relaz Once again, your post rocks! I read it after I posted. You are so on point. @BoomBoomTam, one step at a time. I hope you have a Mended Hearts group near you. It's a room full of miracles. Keep us updated on how it's going.
Ralaz, September 4, 2019 10:21am EST
Boom Boom Tam-
Just Breathe, The PVC's are annoying thuds- I promise you will not die from them. Caffeine can also cause PVC's and they happen more when someone is tired. Start here, by limiting your caffeine.
I am only allowed one cup of coffee to wake up with. (Sometimes I sneek and have a 2nd cup!) There are times that athletes develop VT, it is usually benign. The 4 beats of VT you have experienced are considered diagnostic but not life-threatening at that point. To be of great concern to the doctors, someone has to have damage to their heart and have sustained runs (30 seconds or more). These are the people who are most at risk for sudden death.
I also utilize Youtube relaxation meditations and calming music on my phone to fall asleep to. When it's really bad and I can't sleep I take a Tylenol PM!
Control the things you can, continue to exercise because this is how we keep our hearts strong!
Your doing great!
BoomBoomTam, September 4, 2019 2:26pm EST
Thanks @newpacer73 and again thanks to @ralaz! I have managed to push my ECHO stress test about as much as I think I can manage. When I orginally left the ER and made an appt with the cardioogist, they were putting me out for the initial consultation until October! I thought, okay, I guess it's not serious, but then anixeity set in. Panicking and pushing got me in for the inital consult 26 Aug, but then an appt for the stress test wasn't suppoed to be available until late September. More panicking, more break downs and I got it pushed to next week. Mentally, it still seems like a long wait, but I can't imagine waiting until the end of the month to find out what's going on with my ticker -- assuming they'll be able to tell me anything.
The amount of "care" in my care team seems lacking, but I have no idea how all this works with insurance or anything, so I feel stuck with what I've got. I still haven't heard back from my message to the cardiloigst that I sent yesterday, if that gives any indication of what I'm dealing with. I will look into the Mended Hearts group.
Once I get the stress test done, I may look into other options for a cardiologist. Right now, in an attempt to keep stress levels low, I don't want to delve into the fiasco of finding/getting an appt with another cardiologist. I do meet with my new primary care doc next week (the day before the stress tess...I scheduled the appt weeks before any of this stupid heart stuff started going on), so hopefully he can be a bit more understanding and steer me in the right direction.
As for the caffeine, I've gone from drinking 4-5 cups of super strong tea a day to one cup and maybe some green tea. What fun is that!? I'm not much of a coffee drinker unless it's espresso, but I guess that's off the table for a while. Oh, and the 5,4,3,2,1 thing did help. I felt a little panicky on a walk today, then tried Ralaz's 184.108.40.206.1 method and I noticed an immediate change!
Fatigue is not helping and I definitely feel a bit more PCV-y when I'm tired. The VT episodes only happen when I'm sleeping (or tryng to) so it has really cut into my sleeping hours and is also why I fear going to bed, so fatigue and anxiety are really making me a ball of fun lately :)) Last night, I thought I'd try magnesium since several studies have shown it can help. Guess what! No problems at all last night and I slept most of the way thorugh. My heart was so steady I thought it had gotten up and wandered off. It could have been a placebo effect, but I'll take what I can get.
I think there's added stress with this because I have a big trip planned in October (France) and I'm terrified this is going to keep me from going or ruin my trip plans somehow. I know worrying doesn't help, but how am I supposed ot go through France without sampling wine!? I think it's illegal, isn't it? I kid, but I've been looking forward to the trip for so long, I just don't want anything to screw it up. Espeically not something like this. Sigh.
NewPacer73, September 4, 2019 4:46pm EST
Okay, now I'm jealous. France? Amazing country. Sounds like you did a lot in a couple of days to mitigate your situation. I love it. Also, it's been my experience (or maybe just plain luck) to get a PCP (new or otherwise) to call in to make a test/specialist visit happen quicker. That's worked a couple of times. Go over your plans to travel with both the PCP and the cardiologist. If I remember correctly, France is universal health coverage, so if you need help, I don't think it'll be a problem. I had an Afib episode in Rome. No problem getting converted back to sinus rhythm even though no one spoke English. smile I am very impressed with your efforts to find out what is going on, how they will manage it and how to get you on a med regimen asap, so you can settle this all down before going to beautiful France. Feeling jealousy bubbling up again! Your doctors can advise you on the trip, but my guess is it will all be fine. France has higher medical success outcome data that we do (we rank 18th among industrialized countries, but are number 1 in health care costs). So, if you need care there, it should be just fine! I'm sending you a picture of my new support group for cardiac patients that I just created. Or not... did not work. smile So far, my group is just me and the guys. Gonna smoke out females if it kills me. smile. Bon Voyage. Keep us posted. I want to know how you are doing, although you really have taken the bull by the horns already, so I'm not worried.
BoomBoomTam, September 4, 2019 6:15pm EST
Ooh, sorry, didn't mean to stir up jealousy. My husband and I have always joked that we'd like to see how the health care system works in France (I've heard it's amazing), but I'm really hoping to only keep that as a joke!! Rome is a terrific city...sorry to hear you had to experience it from the hospital, but good to know they got you sorted. I know some French, but I don't think it would cover medical stuff. I'm sure they'd be able to work with "Too much boom boom!!" as I slapped at my chest.
BoomBoomTam, September 12, 2019 4:58pm EST
Update: What's been oging on, Stress Test, new doc, torture...
So on the upside, I've barely noticed any PVCs for the past week and haven't (as far as I know) had any NSVT episodes. YAY. However, I am having some serious anxiety with a pounding heart (not racing, not skipping, just episodes of POUNDING) and my blood pressure readings are terrible. Ugh.
Had the ECHO stress test today. Of course I had been hoping to know the results right then. Why does no one tell you there's going to be ANOTHER wait for the results!!!??? The techs of course would say nothing concrete. The EKG tech said the EKG looked "good" but the ultrasound tech refused to say anything which is only adding to the angst. When I hopped off the treadmill, a second ultrasound was taken and there were some skipped beats. No idea how bad this is or not. Seriously, why do they not train these people to understand how insanely stressful not knowing is? I'd rather hear bad news than receive no info and be left wondering. Anyway...
I also saw my new primary care doc yesteday. He has PVCs too, so he knew exaclty how scary they can feel. He took a long listen to my heart and couldn't hear anything abnormal. So yesterday was a GREAT day. Nearly all anxiety went away and my head fetl clear and energized and happy. Then, today came and I'm back to the fog of anxiety brain.
Sigh. Waiting for meidcal results should be classified as an instrument of torture.
Ralaz, September 12, 2019 5:16pm EST
Just breathe, the reason doctors have to look at the results is that the electrical part of the heart is very complicated and the EKG takes extensive training not miss something or dismiss a rhythm, especially when dealing with ventricular tachycardia. Hang in there, you are doing great!
Yes, it is scary, but you have resources: Meditation, yoga, counting the 5 things help, go out with friends and laugh! Breathing- inhaling 3 counts, exhaling for 6 counts do this for 5 min at a time. Focus on positive things in life!