Still Fighting The Good Fight
- by MinimeJer05
- 2022-09-14 00:30:08
- 380 views
- 5 comments
Figured I'd drop in to provide an update. After several rounds of SVTs and PVCs I was fitted with a heart monitor for 2 weeks. The results were lackluster.
My Cardiologist and nurse went through them page by page and noted nothing too concerning or crazy. Some times, when I pressed the button and logged my symptoms, my heart was functioning as expected/normal, while a few times in the middle of the night, they noticed it was elevated, but not alarmingly high.
I explained that almost every other night, I get woken up from a deep sleep and notice my heart start to creep up (resting at 60-65, starts climbing to 85-95). If I get up, go to bathroom and "bear down" I can get it to top off no higher than 115bpm and then it'll settle down and I'll return to sleep (sometimes within 15 mins, sometimes I'm up for hours). A few rare times, I couldn't get my heart down in time and it climbed as high as 165. Luckily, it goes down after 10-15 mins, but it's definitely uncomfortable and stressful.
Because I've "mastered" the bearing down method, I think the monitor only recorded 2 of those high spikes. I have sense had 2-3 more big spikes since removal of device (one this evening at dinner, just sitting there with my wife and then I noticed my heart racing.) I didn't have time to find a restroom to bear down, but my wife held my hand and told me to close my eyes and breathe and it stopped at about 155 before slowly going down. Ruined my appetite and put me "on-edge" for the rest of the night. It's difficult because the racing heart, tingling arm and shortness of breath causes more panic, which I think increases my heart faster. It's like my mind is battling my body and I can't control the two every time.
My Cardiologist did increase my Metoprolol from 50MG twice a day to 50 in the morning and 75 at night. This has been true for about a week now and I still get up randomly with the spikes in hesrt, but they seem less intense and go down within a min or two. I noticed my heart seems to be much quieter in evening and morning. For the past year, sitting on the couch or at my desk meant 90-105bpm and light walking meant 110-120bpm, with exercise going anywhere from 120-160bpm.
Now, I sit at about 70-85, walk at 90-100 and exercise at about 110-140. This was what I was like before my PM. Not sure how much it matters if I still mostly feel the same? I do notice after an elliptical or treadmill run, if I don't use the "cool down" feature or slowly stop and wait for a few seconds, I become dizzy when I get off machine, no matter what my pulse is at.
I check my blood pressure every few days and it's generally around 120/80, sometimes 5 high, sometimes 5 low.
I'm seeing a new vestibular therapist that is approaching things from a neck/back/chest perspective. She noted my posture is somewhat inward and hunched and wonders if my mechanical valve surgery (open heart) started effecting my posture and maybe trying to "open me up" will help? She had me stop seeing my Chiropractor as we are doing some unique neck and back stretching that could interfere with that.
Still having bad days of "foggy" vision, neck stiffness that leads to visual sensitivities making me feel sick and like my stomach is getting twisted. Still occasionally experiencing 30 seconds - 1 min of vertigo episodes that I can't replicate. Most of it feels very much neck and back related. Sitting to standing (or other way around) can sometimes help.
A recent echo shows good heart structure. EF of 52%, some minor thickening of walls and very minor leak that they said they'll keep an eye on, but nothing alarming or concerning.
My primary Cardiologist is set to move at the end of the year and I have one more visit scheduled in Nov to figure out my next steps. I've seen this person since I was about 13 after my last one retired. Might be good time for a change?
Hope all is well with everyone. Trying to keep a positive mind. Some days I struggle and worry about all of this and wonder why this all happened around the time I got the PM and other days I just remind myself that someone else has it worse off and I should be grateful to be alive and live an otherwise normal life. It's just frustrating not knowing why.
Still waiting on my Mayo Clinic referral.
Fighting for a better quality of life
by Gemita - 2022-09-14 13:21:30
Jer, thank you for the update. Those who have never experienced troublesome symptoms from an arrhythmia are indeed fortunate. I do not know why some of us feel irregular heart rhythms so acutely while others are not troubled by them at all, but it is far more complex than just putting it down to anxiety.
My doctors tend to want to know, “how the actual arrhythmia is affecting me, what symptoms I have during an arrhythmia, like breathlessness, chest pain and how frequently I get these symptoms”? Doctors in my experience tend to be more interested in our “symptoms” rather than on the arrhythmia present unless they see a very high heart rate/significant arrhythmia event. For example Atrial Fibrillation may need treating to control heart rate and to prevent a stroke in those most at risk, but otherwise they might just leave well alone.
The fact that you kept pressing the button during monitoring of your irregular heart rhythms confirms your symptoms affected your body in some way. When the heart is out of rhythm, blood flow around the body can indeed be affected and I can well believe that a change in rhythm or heart rate, if not treated will cause problems for the heart, brain or other organs over time. I live with rhythm disturbances daily and experience symptoms on a regular basis, but like you I have found ways to manage my symptoms.
I think all you can do Jer is to keep reminding your team that although no significant arrhythmia event has been identified, you have been exceedingly symptomatic during periods of higher heart rates due to SVT and benign PVCs and this is affecting your quality of life and your sleep patterns. They need to be reminded of this from time to time since some of us will be more symptomatic than others.
I do sincerely hope that the Mayo Clinic can finally answer some of your difficult questions. i am reassured though that your ejection fraction is normal. I wish you well as always Jer
Thanks for the update
by Lavender - 2022-09-14 13:28:55
I've been reading your posts since before I signed on here. Some thoughts to try if you haven't already done so:
Therapeutic massage by a licensed masseuse
Cognitive behavioral therapy
Meditation tapes on YouTube
Mastering the power of now. Living in the moment regardless of how you feel.
Stop checking your heart rate. It might cause more anxiety
Listening with headphones to calming music
Spend time in nature just look at the clouds, a flowing stream, birds
I know you're trying to get help but help might not come. Tests and doctors haven't been as helpful as you need. So you must help yourself learn to accept and live with things as is. I've been in that situation. I spent six months fainting with six specialists missing my rare ventricular standstill arrhythmia. Going so long without help and having two near death experiences during two of those drop fainting attacks, made me afraid to leave my house for a while. Even going into the one store where I dropped dead -with no one noticing -causes PTSD. (I was alone in a back aisle and came to on the floor alone with no one noticing.)
I keep training myself to counter the anxiety with self help calming techniques. I go out and pray on the way and listen to calming radio stations. I shop alone and force myself to stretch my boundaries.
What you're going through makes your brain think you're in danger. It puts you in flight or fight mode. Combine that with not having medical professionals solve your issues-can be a lonely place.
Keep seeking help but also work on the way you react to how you feel. It's got to be exhausting for you the way it is, Jer. Hugs. I hear you and said a prayer for you.
by Lavender - 2022-09-15 11:32:17
I'm thinking of this comment you made, "I just remind myself that someone else has it worse off and I should be grateful to be alive"
I sometimes do that too-where I compare and figure that at least I'm not as bad off as others. Truthfully others have it worse and others have it better than all of us. But...it's not really helpful to my situation to compare. It doesn't change my situation or remove my problem. There's no joy in knowing someone has it worse than me. There's no envy of someone who has it better.
My problem is real to me and causes me real concern, regardless of what anyone else is going through🥴
Your pain and anguish is real, Jer. No guilt in having it. You didn't cause this and are valiantly fighting back. You're seeking answers and are open to suggestions. You alone spend those times feeling the weird heart things, sitting in the bathroom trying to stop it, you alone awake and once more hate to even tell anyone that you're having anxiety. You think of your mortality and think no one can understand. You stop talking about your health issues with family, or your kids, because they don't want to hear it or they just act like you're a hypochondriac.
I fully understand. As justified as I felt when the heart monitor I fought for over six months finally caught my ventricular standstill, I still am the one who has to live with anxiety at times because of my concerns not having been handled better and faster. Getting the pacemaker proved I wasn't "just anxious ". I had real, identifiable, serious problems. I had been dismissed by so many!!
Only you know how hard this journey has been for you. You matter.
If we threw our problems in a pile and saw everyone else's, we'd grab ours back.” — Regina Brett
Thank You ALL!
by MinimeJer05 - 2022-09-16 13:06:29
I just wanted to stop back and take the time to thank each and every one of you. I really do appreciate the kind comments and concern.
Good Dog -- thank you for the words of wisdom and encouragement. Reading that comment immeidately made my day and put a smile on my face.
Gemita -- As always, you are so resourceful and supportive. Thank you for helping me along my journey, and for always providing such useful information and the encouragement to continue to seek answers (I will post an update down below).
Lavender -- I am going to actively look into everything that you have said and suggested. The last two days, my drive into work has consistented of me occasionally looking up at the clouds and taking in their beauty, as well as rolling the windows down and just listening to the sounds of the world. I admit I can do much better in terms of easing my own anxiety and I am going to putforth a strong effort into trying to tackle this aspect of my life -- I think it will absolutely help me.
Amongst all of this, I had lab work done with my general doctor (part of the Mayo referral process) and they found that my TSH levels were elevated (about 9). She said something about that level being between 0.5 and 5 and they usually don't get too concerned unless it's over 9, but because of my cardiac issues, she wanted to take a more aggressive approach. I was prescribed a very low dose thyroid medication (starts with an L? I don't remember the exact name), so we will see if that helps.
I was also referred and scheduled with an Electrophysiologist. The only bummer there is the next available appointment is January 12th. I am on a waiting list if things open up, but they said that was the best they can do for now. I did leave another message with my cardiologist asking if she could do anything to bump that up.
They said if my conditions worsen or happen for longer periods of time, to head to the ER, otherwise to just keep them updated via messages and phone calls.
I got done with another round of physical therapy today and I can say that my body is feeling good. I am stretching and opening up my shoulders, back and neck and it feels good. It's not instantly fixing any of my issues (wasn't expecting to), but it's making me feel better at times.
Take care everyone and again, I appreciate the comments and suggestions and words of support. Sometimes I feel like I am alone and then I pop on these forums and read everyone's post and remind myself that there are others out there and together, we can beat whatever problems we have!
You know you're wired when...
The meaning of personal computer is taken a step further.
I feel so blessed to have this little gem implanted in me. When I think of the alternative it is quite overwhelming sometimes.
by Good Dog - 2022-09-14 09:00:34
As I read your post I could identify to some small degree with the pain and frustration that you must feel on your journey to find a solution. I have very recently been plagued to a much, much lesser extent with some PVC's and weird arrhythmias. Although some 20 to 25 years ago I was experiencing arrhythmias similar to yours. I was under a significant amount of stress at the time which I am sure contributed to them. In any case, they just disappeared over time and to this day, I have no idea what to attribute that to. My point is that I understand how unsettling it can be! I can sense the difficulty associated with the anxiety created as you become hypervigilant in anticipating and fighting through the next round of them.
I am so grateful that you are sharing with us your journey through these difficult times. Unless you have experienced what it is like to deal with arrhythmias and the negative impact that they can have on our quality of life, it may be difficult if not impossible to understand what you are struggling with. Sharing your experience is very helpful to many of us in multiple ways, but most importantly in the knowledge that we are not alone. I truly admire your efforts to maintain a positive attitude through all of this and understand how difficult that can be.
I hope that you will continue to keep us informed of your progress. I am confident that your efforts will eventually bring the relief that you are fighting so hard to achieve. Thank you for sharing your experience and please know that my thoughts are with you! It will get better!