ASD symptoms or something else?

General ASD/Septal Defects Discussion
1

Hi everyone,
I have been scou

ring the internet for an answer to this, but all results seem to be focused on clinical findings, not actual physical person symptoms, for lack of a better term.

I have been experiencing increasing episodes of high heart rates for about 2 years and finally went to the doctor last May. He diagnosed me with inappropriate sinus tachycardia, where my heart rate goes high for no reason, and put me on Metoprolol. There is nothing physically wrong with the heart with this condition, so beta blocker control was pretty much my only option. On a follow up in August, I had an echo done and he continued with my beta blockers.

My pulse still remains about 100-120 daily despite 250 mg of Metoprolol daily, the lowest it's ever been is about 88. I had an incident a few months ago where I attempted some yoga exercises with a balance ball and my pulse almost immediately spiked to 220, with severe nausea, edges of vision black, super dizzy, etc. It went back down to 140 after about 20 minutes. I have also been feeling a lot of chest tightness and the feeling that I can't quite get enough air without having to breathe quickly. It's like the feeling when you hold your breath for as long as you can and finally let it out -- that burning, tight, pressure feeling in your chest where you have to keep taking deep breaths and still don't feel like you are getting enough air. I generally try to breathe deeply and slowly because it helps lower/maintain my heart rate, but with this I have to keep taking deep breaths and constantly feel like I can't catch my breath with my typical number of respirations.

On my last visit, he reviewed my echo results (6 months later, don't get me started!) and told me I have a patent foramen ovale, which is probably an atrial septal defect. I go for a TEE on March 10 to see the size of the defect because they couldn't see due to a "large amount of tissue on my chest" -- a polite term that made me laugh =P Anyway, they said the bubble test wouldn't be enough, and that they are pretty certain it's an ASD, the TEE is just to determine the size of it and what must be done about it. All my symptoms continue.

My question is -- are my symptoms due to the ASD? If they are, do they fall under what doctors consider to be symptomatic enough for surgery? Or am I missing something? I know that because of the regurge of blood flow with an ASD, it can contribute to my severe fatigue, chest pain, etc. but I also have other physical problems so it's difficult for me to tell which is which. Like I said, I can't find much online about symptoms other than clinical findings, and I was wondering about the regular "day-to-day" symptoms. I have read enough to know that if I am experiencing a lot of symptoms, they recommend to have the hole closed.. Are my symptoms what they are referring to?

Please help!
Gabbi

2

I, too, had a rapid heart rate which the docs put me on medicine. It took a couple of years and a lot of frustration before they diagnosed my asd. They finally repaired it and I feel a lot better. Good luck!!

3

Tami, did you have the shortness of breath and burning feeling too? Or just the rapid heartbeat? Once you had your surgery, did the symptoms pretty much go away? I'm really anxious about it because for almost a year I was just going along thinking all these symptoms were from my tachycardia and now I find out last week that there's the hole, and because my symptoms are getting worse and more frequent it freaks me out =(

4

Your symptoms could be from the ASD or another reason. I am 27 yrs post open heart surgery for the closure of 3 holes and I have many of the symptoms you describe. I went for over 20 yrs without being able to exercise bc my heart rate would jump to dangerously high rates and I couldn’t breath and I would get dizzy and feel like I was having a heart attack. Because of my age ( I am 43) doctors told me I was out of shape and over weight and did nothing. More recently I found out that because of the sizes and number of holes and the length of time before they were closed ( I was 16) the damage might be irreversible and thus the reason for the problems still. I still have times when I feel like I can’t enough air in or out and have to take extra breaths and deep breaths to “catch up” my breathes. I can’t exercise more than walking and even that causes chest pain and dizziness at times. I am seeing a Pulmonologist now also who is looking at why and trying to find an answer. I know I didn’t really answer your question but at least you know you aren’t the only one with these symptoms. Good luck

5

The TEE should be really helpful - I had an echo done where they first diagnosed my ASD but they told me I needed a TEE to visualize the hole and what would be needed to treat it.

I ended up having 2 TEE procedures (one for cardiologist and another for my surgeon). The diagnosis was a large hole 2cm with shunting between the atria. I had a Amplatzer Occluder placed in the hole to stop the the shunting.

My symptoms before the surgery were: breathlessness ( could barely climb my stairs without huffing and puffing), fatigue and fainting. I did not have palpitations before my surgery but now I have them after. Which is odd.

Anyway I think your TEE will help alot. Definitely keep pushing your doctors for answers - I had 2 doctors tell me I had asthma before my ASD was diagnosed!

best wishes,

Jennifer

6

hi i live in edinburgh scotland i was diagiosed with a large asd ,and the symtoms i have is shortness of breathe and fatigue

and palpatations which come and go but no chest pain , but i have been told if i started getting chest pain i need to go straight to hospital ,and watch out for colds and flu which can make matters worse because they can be life threatnen if not treated proparly ,at the moment i have a virus which is requiring medication with antibiotics because of my heart condition ,i am waiting on open heart surgery they have tryed every thing else to close it but without success.mine is to big .

7

Thank you all so much for your replies! I'm 26, and have been having problems since I was 17, but it has been a fairly slow progression. Back then, I would only have an episode maybe once a month and they did a holter monitor but of course didn't find anything. I was told I had exercise induced asthma, panic attacks, that the pain in my chest was from gastric reflux, a heart murmur, and that there was nothing wrong. I finally went to see my current cardiologist at UPenn and he diagnosed me last year, but my symptoms in the past year have been getting considerably worse. A year ago, it was palpitations and fast heart rate every few days, now I have a fast heart rate all the time, can't do pretty much any exercise (even standing up too fast leaves me super winded & tired and my heart rate spikes up very high), chest pain/burning, shortness of breath about every other day, etc. I'm just concerned because I seem to be deteriorating so quickly. Hopefully the TEE will show how big the hole is so that we can get to the next step. Its awful feeling like this all the time! Anyway thank you so much for all of your replies!! I don't feel so alone anymore =)