Still Fighting The Good Fight

Grateful

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!

Sincerely,

Dave

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. 

Also

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

Hello all,

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.

Minor update 

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!

Jer