AVR and anxiety/panic - An open discussion

[worktheday]

Hello all!

Want to begin by wishing you all the best of health. As I stated in the title, and to elaborate slightly, I'm looking to begin an open topic for people who suffer from anxiety and or panic who have had or are going to have AVR. I'm not looking to limit this discussion in any way. Any and all posts surrounding this topic are welcome. Whether it be your personal story, techniques that have/are helping you, reaching out for support from others, just venting, basically anything that someone who has had AVR and also has issues with anxiety or panic of any sort. I realize there are many other posts in regards to this on varying levels, I just thought I would start something fresh.

To begin, and I'll attempt to keep this brief not knowing what type of response this topic may or may not receive, I had AVR about 8 years ago. I am now 39 years old. Even prior to my diagnosis of regurgitation two years before my surgery at the age of 29, I had developed what was apparently an anxiety disorder going back to about the age of 25. This is the age that I had my first "panic attack". It was horrifying. Never had experienced anything like it, thought I was dying, heart attack, etc. I continued to have issues with anxiety up to and through, still to this day. I've been on medication for it for over ten years. I have periods of time when it may not affect me at all for months on end, then seemingly out of nowhere it becomes a weekly, multiple times a week issue for months in a row. This has been my pattern for basically the last 13 years of my life. I have been to many therapists, practiced cognitive therapy, as well as attempting to learn some mindfulness for those of you that are familiar. But its something I still struggle with at times.

The worst part (in my opinion) for people who have had AVR, or any heart related issue or procedure and also have an anxiety/panic disorder/issue, is the fact that SO MANY of the symptoms we experience when having a panic attack or generalized anxiety, are identical to that of heart problems. Rapid heartbeat, shortness of breath, possibly pain or tightness in chest, muscle spasms, etc. People experience their own symptoms in different ways a lot of the time. I know I personally over the years have made at least a half dozen trips to the ER concerned over something being wrong with my heart, ESPECIALLY because of my AVR, only for it to turn out physically I am fine. When the panic comes on my first thought is "OK, is THIS the time when its not anxiety and something is really wrong with my heart??". That's seems to be the hardest thing for others to understand. That I feel as though I'M different, that I need to be more precautious (which actually turns out to be fearful) because I have had OHS.

I struggle desperately with this to this day. As I said, it seems to come and go with me personally for weeks or months at a time. I don't want to be on medication for this. As I write this, this moment I'm completely fine, but I've been in the midst of one of my "anxiety stretches" for probably 3 or 4 months now.

That is the crux of my story. I'm willing to share and discuss even more if the interest is there with others here. As stated earlier, please feel free to post ANYTHING at all you feel may be related, not just to me or my story, but your own as well. I'd be very interested to hear how others out there feel, have dealt with this in their own lives, how you cope, or how you struggle to cope. Anything at all.

So I hope this thread receives some response and begins some dialogue. I'm more than open also to being private messaged, emailed, etc.

Here's hoping you are all having a wonderful day and feeling great!

Jay

P.S. - so much for being brief

 

[Agian]

I've struggled with anxiety, since I was 17. Have had panic attacks episodically since then. This has been made worse more recently, with the news that I'll need an AVR. I still function OK on a day-to-day basis. Most people would never suspect it. I hide it well.

 

[worktheday]

I've struggled with anxiety, since I was 17. Have had panic attacks episodically since then. This has been made worse more recently, with the news that I'll need an AVR. I still function OK on a day-to-day basis. Most people would never suspect it. I hide it well.

In the waiting room...remember the feeling. How old are you now? How does your anxiety affect you in regards to this? At 4.1 sounds like you could be a year or two away from surgery if my memory serves me correct? Anything you'd like to share, if anything at all, feel free.

Jay

 

[Midpack]

AVR and anxiety/panic - An open discussion

Hi,

I identify myself with much of what you said. I am not currently having panic attacks, but i had them in the past. Anyway, i beleive that therapy + medication, if necessary, should offer good relief.

Personnally, i have no problem with anxiety medications, even if i should take them for very long periods (or even forever). If you have a mechanical valve, you need coumadin for life. If you have HBP, you probably need medication for life. But when it comes to "psychiatric drugs", that basically try to restore your emotionnal equilibrium, many people tend to be resistant. Basically, i see no difference. Of course i am talking about very well tested drugs, in slight dosis, and indicated and controlled by an appropiate professional.

Regards.

 

[Jkm7]

Hello all!

Want to begin by wishing you all the best of health. As I stated in the title, and to elaborate slightly, I'm looking to begin an open topic for people who suffer from anxiety and or panic who have had or are going to have AVR. I'm not looking to limit this discussion in any way. Any and all posts surrounding this topic are welcome. Whether it be your personal story, techniques that have/are helping you, reaching out for support from others, just venting, basically anything that someone who has had AVR and also has issues with anxiety or panic of any sort. I realize there are many other posts in regards to this on varying levels, I just thought I would start something fresh.

To begin, and I'll attempt to keep this brief not knowing what type of response this topic may or may not receive, I had AVR about 8 years ago. I am now 39 years old. Even prior to my diagnosis of regurgitation two years before my surgery at the age of 29, I had developed what was apparently an anxiety disorder going back to about the age of 25. This is the age that I had my first "panic attack". It was horrifying. Never had experienced anything like it, thought I was dying, heart attack, etc. I continued to have issues with anxiety up to and through, still to this day. I've been on medication for it for over ten years. I have periods of time when it may not affect me at all for months on end, then seemingly out of nowhere it becomes a weekly, multiple times a week issue for months in a row. This has been my pattern for basically the last 13 years of my life. I have been to many therapists, practiced cognitive therapy, as well as attempting to learn some mindfulness for those of you that are familiar. But its something I still struggle with at times.

The worst part (in my opinion) for people who have had AVR, or any heart related issue or procedure and also have an anxiety/panic disorder/issue, is the fact that SO MANY of the symptoms we experience when having a panic attack or generalized anxiety, are identical to that of heart problems. Rapid heartbeat, shortness of breath, possibly pain or tightness in chest, muscle spasms, etc. People experience their own symptoms in different ways a lot of the time. I know I personally over the years have made at least a half dozen trips to the ER concerned over something being wrong with my heart, ESPECIALLY because of my AVR, only for it to turn out physically I am fine. When the panic comes on my first thought is "OK, is THIS the time when its not anxiety and something is really wrong with my heart??". That's seems to be the hardest thing for others to understand. That I feel as though I'M different, that I need to be more precautious (which actually turns out to be fearful) because I have had OHS.

I struggle desperately with this to this day. As I said, it seems to come and go with me personally for weeks or months at a time. I don't want to be on medication for this. As I write this, this moment I'm completely fine, but I've been in the midst of one of my "anxiety stretches" for probably 3 or 4 months now.

That is the crux of my story. I'm willing to share and discuss even more if the interest is there with others here. As stated earlier, please feel free to post ANYTHING at all you feel may be related, not just to me or my story, but your own as well. I'd be very interested to hear how others out there feel, have dealt with this in their own lives, how you cope, or how you struggle to cope. Anything at all.

So I hope this thread receives some response and begins some dialogue. I'm more than open also to being private messaged, emailed, etc.

Here's hoping you are all having a wonderful day and feeling great!

Jay

P.S. - so much for being brief

Just thought I'd mention that not all of us here have AVR.
Some of us had other valves replaced.
I'm a Mitral Valver.
What about us? Makes me anxious to 'feel left out'.

 

[Agian]

In the waiting room...remember the feeling. How old are you now? How does your anxiety affect you in regards to this? At 4.1 sounds like you could be a year or two away from surgery if my memory serves me correct? Anything you'd like to share, if anything at all, feel free.

Jay

I'm 45 Jay. The thing that's upset me most recently is being told I might have had a TIA. For a few seconds the lower half of the vision in my left eye went, about two months ago. I was inclined to ignore it, but since then I've had a number of tests. CT and MRI of my head, Carotid ultrasound. I'm due for a TEE next week to look at my PFO. I'm taking Plavix and Aspirin to prevent a potential stroke (!) I feel like I should've kept my mouth shut.

 

[Agian]

Just thought I'd mention that not all of us here have AVR.
Some of us had other valves replaced.
I'm a Mitral Valver.
What about us? Makes me anxious to 'feel left out'.

I doubt that was the intent. Why would it make a difference?

 

[Guyswell]

Agian,

It's a good thing you spoke up. A previous TIA is a significant warning sign for the possibility of a bigger stroke. That's why you're having all those tests. If there's an underlying condition that caused a TIA, it could also cause a bigger stroke.

You should also see an ophthalmologist (not an optometrist) to check for problems with your retinas. My dad had partially detached retinas several times and the symptoms were similar. It's important to rule that out since retina problems can lead to blindness.

Good luck!

 

[Agian]

I've had detached retinas on both sides. They were glued back with laser treatment.

 

[AZ Don]

It's funny but I just posted in the waiting room rules thread and I think that post is just as relevant to this thread:

Remember what an excellent prognosis there is for diagnosed BAV and aortic aneurysms. Many people are not so lucky to have an illness with a cure rate that is what, 98% or so?

I'll add that I have had my own share of reasons to have anxiety. I lived with an aortic aneurysm for a short time, had open heart surgery to have it repaired, and now I am in the waiting room with a well functioning BAV that has something like a 50% chance of failing and requiring AVR. Still, even if I have to have surgery again I know that the odds are very high that I will be back to normal a couple months later.

 

[worktheday]

Just thought I'd mention that not all of us here have AVR.
Some of us had other valves replaced.
I'm a Mitral Valver.
What about us? Makes me anxious to 'feel left out'.

I didn't intend to leave anyone out of the discussion Jkm7. My apologies if it came across that way. I did begin with mentioning the AVR and anxiety, but if you noticed further down in the post I mention "who have had AVR, or any heart related issue or procedure". In any event you mentioned feeling left out, but no mention of any issues you may have related to the topic, anxiety or panic? Do you have any, I'd be interested to hear if you wanted to share.

 

[worktheday]

I'm 45 Jay. The thing that's upset me most recently is being told I might have had a TIA. For a few seconds the lower half of the vision in my left eye went, about two months ago. I was inclined to ignore it, but since then I've had a number of tests. CT and MRI of my head, Carotid ultrasound. I'm due for a TEE next week to look at my PFO. I'm taking Plavix and Aspirin to prevent a potential stroke (!) I feel like I should've kept my mouth shut.

I'm sorry to hear that Agian. I'm sure its nerve racking. But I think most would agree, and probably yourself too deep down, its best that you did mention it. I myself going back a number of years have had what I'd say are once or twice a year episodes where my vision goes completely...blurry for lack of better description. Can last anywhere from 30 seconds to a number of minutes. I too went through a number of tests, only to be told they thought it was a muscular issue in my eye and straining with nothing to worry about. Different from your issue obviously, but can relate in the sense of something happening in that area and not knowing what it was, but that it just "wasn't right". That was something that would spark my anxiety also. Been a while now since I've one of those episodes myself.

 

[worktheday]

It's funny but I just posted in the waiting room rules thread and I think that post is just as relevant to this thread:

Remember what an excellent prognosis there is for diagnosed BAV and aortic aneurysms. Many people are not so lucky to have an illness with a cure rate that is what, 98% or so?

I'll add that I have had my own share of reasons to have anxiety. I lived with an aortic aneurysm for a short time, had open heart surgery to have it repaired, and now I am in the waiting room with a well functioning BAV that has something like a 50% chance of failing and requiring AVR. Still, even if I have to have surgery again I know that the odds are very high that I will be back to normal a couple months later.

Glad to hear you have a positive attitude with the inevitable AVR at some point AZ Don. Half the battle right there and so important. I'm sure you'll do great!

 

[Michellemar]

Hmmm- having had radiation to the heart (mantle treatment) in my eY 20's it set me up for lifetime PTSD in the muscle itself. My Cardiologist said he'd never met a young person who didn't afterward need meds for the rest of their life. I take Clonazepam- dropped my always fast pulse of 87 to 72. Oh yeah! Also staring at r walls after tricuspid surgery a month ago has gotten me down but the SSRIS are contraindicated(?!) and I NEED that Serotonin to get to my brain- it's made in the gut. help? Don't see my new Cardiologist for another 12 days..(!!) Michelle

 

[Jkm7]

I didn't intend to leave anyone out of the discussion Jkm7. My apologies if it came across that way. I did begin with mentioning the AVR and anxiety, but if you noticed further down in the post I mention "who have had AVR, or any heart related issue or procedure". In any event you mentioned feeling left out, but no mention of any issues you may have related to the topic, anxiety or panic? Do you have any, I'd be interested to hear if you wanted to share.

The thread title caught my eye first ie AVR and anxiety/panic.....
If you take a look around this site even going back years, you'll see the trend to focus close to exclusively on AVR. Every now and then I find it helpful to remind folks the heart has more than one valve that can cause us valvers problems.

I'm sure you meant no offense.
And yes, I have suffered some anxiety throughout two OHS in four years.

 

[Midpack]

AVR and anxiety/panic - An open discussion

Glad to hear you have a positive attitude with the inevitable AVR at some point AZ Don. Half the battle right there and so important. I'm sure you'll do great!

AVR, as far as i know, its not inevitable in his case. There is a chance (estimated at 50%, as he said) for AZ Don to never need a replacement for his bicuspid aortic valve. Lets hope for it!

 

[Agian]

Yep. They say that two thirds of people with bicuspid never need an operation.

 

[worktheday]

The thread title caught my eye first ie AVR and anxiety/panic.....
If you take a look around this site even going back years, you'll see the trend to focus close to exclusively on AVR. Every now and then I find it helpful to remind folks the heart has more than one valve that can cause us valvers problems.

I'm sure you meant no offense.
And yes, I have suffered some anxiety throughout two OHS in four years.

Again as I stated prior, I did include others and ANY related conditions with my statement in the middle of my original post.

 

[AZ Don]

Thanks for the good wishes.

 

[Paleowoman]

Jay - I am identifying with much of what you say, although I have not had long term anxiety, but now that I'm being refered to a surgeon for OHS yes I am riddled with anxiety. I understand completely that this is apparently 'normal' and I've read that many times on this forum over the past couple of years I have been a member. I have books on OHS which stress the amount of anxiety is 'normal'. That DOESN'T HELP me deal with it on a day to day basis. When I'm with other people I easily put on a front and they are a distraction anyway. But on my own the anxiety overwhelms. Not anxiety about death, I'm pretty convinced that surgery is safe. But anxiety about how AWFUL it will be and of recovery, maybe also I don't have any confidence in my heart or health at all anymore. Occasionaly I take 1/2 mg or 1 mg of lorazepam. It helps with the actual anxiety but I then tend to get a kind of 'rebound' anxiety or depression the next day. I have no real answer. I don't think CBT is particularly helpful unless you have underlying reasons for anxiety not related to OHS which is being brought out. I know this anxiety 'natural' but I don't like it.