Anyone experience this?

[pgammo]

Hello all,

I've been having some weird episodes for the last month or so, since I was diagnosed with moderate-to-severe BAV regurgitation, and I was wondering if any of you have had similar episodes.. I am wondering if my heart is progressively deteriorating or if I am just over stressed. I also want to note that I've had bad anxiety for years.

Here goes:

I've been waking up at night with my heart pounding strongly, and sometimes rapidly. This obviously causes me to go into a minor panic, so I am wondering if this is heart related or stress related, or if any of you have experienced anything like this? Sometimes, it feels like my heart is skipping beats or beating completely randomly, but I am disoriented when I wake up, so I rarely am able to pinpoint what is actually going on. I've tried sleeping on my back with two pillows to keep my upper body slightly elevated and it seems to be helping a lot. I have also noticed that when I sleep on my side, especially my left, it happens more often. These episodes only occur when I'm asleep.

Also, this other issue I have, happens less frequently. When I fall asleep on the couch, I wake up with my heart pounding rapidly and I feel really hot (not fever wise, but just hot). I also feel really confused and disoriented for a few seconds to a minute.

I've had these as long as I remember, but since I was diagnosed, they have happened WAY more frequently. I've also had anxiety/stress for as long as I can remember, and that has been elevated due to this diagnosis.

Again, I have moderate-to-severe bicuspid aortic valve regurgitation. Did any of you feel like this?

Thanks!

 

[Ovie]

Hey gammo, like you I've suffered with anxiety, and panic attacks most of my life. I'm 25 and until I was told I had to have an AVR, it had been my curse, trying to manage it..it really took a toll on me for a very long time until I got it under control finally, but I still have anxiety/panic attacks, just leads often.

When I was told I had to have OHS, as somebody like yourself who suffers with anxiety and stress, it really didn't help my already crappy situation in life. At night I experienced a couple of these things, especially the disorientedness, heat flash, and heart pounding, especially on my left side.

I experienced new forms of panic attacks, and I had thought I had experienced them
All. With what your diagnosed with, I imagine your experience much more anxiety, and I'm sure some of it is due to your heart. It's a big deal with what you've found out. I suggest you do inform your doctor though on what's going on. I'm guessing more than half of it is stress and anxiety.

Just my 2 cents.

 

[Fundy]

I noticed skipped beats about 3-4 years before OHS, only noticed them while attempting to sleep, every 3rd to tenth beat for hours.

From what I understand the skipped beats don't have any dangerous consequences. I don't think any meds ever seem to be prescribed ever either. Seems like the only comments are they aren't dangerous and you just have to live with it.

However, I have yet to notice any skipped beats after OHS. Myself, personally, I think they are a definite indicator that something isn't quite right. Its hard not to develop anxiety issues once you know you have a heart condition that will eventually be fatal. At this point though you are being monitored and should be able to relax somewhat.

 

[DanielB]

For me, I did notice before my surgery, that after I ate a meal, large or small, my heart would really und. My wife even notices that she could see my heartbeat in my neck ateries -- it freaked her out. That has completely gone away since my AVR.

With all you have on your plate right now, stress would not be out of the question, but it may be owrth mentioning to your doctor. I'm lucky in that I can emaily cardio and primary care doc -- it has been very helpful for in btween visit questions.

 

[Bob in Colorado]

Yep

Yep

I had very similar symptoms for years before AVR. Now, none at all. Chances are those feelings will be much improved after your surgery.

 

[Julian]

Everyone is different. I rarely had any noticeable "skipped beats" or "heart palpitations" before surgery. It wasn't until about 2 years before surgery that my heart started to give off "strange sensations". Now after surgery I get strange heart sensations almost on a daily basis, some worse than others. Most strange heart sensations that the vast majority complain about are PVC's or PAC's, which are thought to be generally harmless even though they can feel like a real emergency.

Sometimes they can make people experience chest pain, shortness of breath, dizziness, lethargy, and in general just a crappy experience. Unfortunately most cardiologist just shrug their shoulders and basically say deal with it, or take beta blockers.

I can tell you that for me, heart surgery has made me hyper-aware of my heart and has left me with more "strange heart sensations" than before surgery. Note that I'm 8 months post op and still in recovery mode. I'm expecting things to settle more as I hit the 12 month mark and beyond.

I was personally expecting to feel amazing in every way after surgery because I was feeling so bad for so long before. I found out that at least at 8 months post operation I don't feel as good as I expected and even though the major life threatening symptoms have been corrected I acquired a bunch of crappy other symptoms that seem to be like a monkey on my back.

Don't want to sound negative just telling you what I've experienced. Personally I have not given up hope and believe at even 8 months post op I still have a ways to go to a complete and full recovery. The first year is just the first step in my opinion. From what I've read on this forum most people really feel better after the first year to 3 years after surgery.

 

[Robert]

I had an Avr in 1994(St. Jude). I feel like you quit often. It drives me crazy!!!! I have had every test known to man but they say I'm fine. I have pains from my back to my chest,numbness on my left side. They tell me its an anxiety/panic attack . I try to workout and the symptoms happen. I freak out then stop working out and feel like ****. My wife thinks I'm crazy! I need to get back into shape but can't get over panic/anxiety feeling. I feel your pain and wish I could help! I hope It gets better for both of us soon! Take Care.

 

[Sarah_Louise]

Yeah me,
Just randomly after my 4th OHS i started experiencing a fast Heart rate, had numerous ECG's, 24 hours ecg's, 7 day ecg's and i was diagnosed with sinus tachycardia, and needed to be put on beta blockers, as my resting heart rate got as high as 140!!
Since being put on the beta blocker it does help, but every now and then i still get the punding in my neck and waking me up through night,
Have you had an ECG during an "episode"?
Love Sarah xxx