Other Heart problems - tired of being treated like a hypochondriac

[BlueBerry6999]

I'm so tired of this issue. Sorry in advance for the longer post, but I need to explain the story behind my heart problems.

When I was 15 my doctor heard a heart murmur by accident. An x-ray showed an enlarged heart and he sent me to a cardiologist who diagnosed me with bicuspid aortic valve. When I asked what it meant he acted all dismissive, said it was harmless and shouldn't bother me until I'm 70.

I smoked occasionally and at 18 I started having problems when smoking. Once my heart started racing at school and I had to sit down. Everyone else panicked (I didn't) and my teacher ended up driving me to the ER, where the doctor told me everything was fine but that with the bicusdpid valve I should stop smoking and taking ecstasy and start working out.

I stopped smoking and started going to the gym, where I was surprised by how well I could actually exercise. Over time though (after a couple of months) I started being out of breath much sooner and started having heart palpitations while doing cardio. I decreased my exercise but it didn't get better. I remember times when I had to sit on my bed for an hour after working out because I was too dizzy and exhausted to move a limb. So I stopped working out altogether.

This was almost ten years ago. My overall health wasn't bad, I could do things like hiking without any problems. I've also had a dog for three years now and I walk her a lot, but in the last couple of years I never did intense cardio.

Then 14 months ago I started going to the gym again to help with stress and strengthen my immune system. Again I was surprised by how fit I was, but from the start I noticed that I always got really cold when doing cardio, even though it should be normal to feel warm when working out.
Then a couple of months ago I started feeling really itchy, having pins&needls feelings in my chest, arms, belly and upper legs like when you spend too much time outside in the cold and then come back into a warm room.

Then two weeks ago I felt normal at first but right after cardio I felt really dizzy, my vision was blurred, I felt high and had brainfog similar to what I had with covid. I continued my workout, thinking I had low blood sugar. Then at home it hit me at once, I was completely exhausted, couldn't move a limb, my hands and even my tongue felt numb, my feet and hands were ice-cold, I had brainfog and was sooo tired. My husband cooked dinner and I thought I would feel better after eating, but I didn't.
I thought due to the exhaustion I would sleep like a stone, but instead I had heart palpitations all night long and couldn't sleep at all. The next day I still felt dizzy, couldn't concentrate, felt extremely tired and felt a light stabbing pain in my chest in different places.
It took about 24h until I felt better.

A week later I still went to the gym because I wanted to make sure it was because of the workout and not just a coincidence. From the start I was out of breath. I wasn't scared or anything, I didn't feel like I couldn't breathe. Basically I felt like I could breathe well except not as much air as I wanted. Like something was restricting my lungs from getting as much air as I usually get.
I ended the workout prematurely and still had the same kind of collaps with dizziness, numbness, feeling cold. This time the stabbing in my chest was much stronger and also it felt like there was a fist around my heart, squeezing it together.
I went to the doctor the next day and she checked my heart and said she heard a heart murmur but she didn't believe it was a heart attack (which I'd never said it was anyway).
She scheduled a lot of appointments for me, for blood works, blood pressure, an exercise EKG and a heart ultrasound, but they're really booked out so I only get the EKG next week and the ultrasound at the end of February.

Now the problem: doctors always act so dismissive when it comes to heart problems. Especially because of my PTSD they know I'm in therapy.
I had the blood pressure thing this morning and the assistent who did it told me everything was normal, I must've clamped something in my back when working out and that sometimes "when we think too much about it" we get these symptoms.

Now I feel like shit. After the second collaps it took me 5 whole days to recover. I could barely walk up stairs, I felt out of breath even when walking my dog. I was in no way anxious, I haven't had a panic attack in years and I know the difference between a panic attack and physical symptoms by now. I mean, I was completely calm all the time, my thoughts weren't panicky, my heartbeat was slow, I never felt like I couldn't breathe, I just got out of breath quickly when doing physically demanding things.

And now this woman told me basically that again everything is in my head?!
I haven't had the EKG yet, but I already feel like it'll show nothing anyway and they'll just tell me I'm imagining symptoms.

I just cried my eyes out because I really don't have the energy to deal with this shit on top of a depression I'm going through and fertility problems. The one thing that made me happy in the last year was that thanks to going to the gym I felt good about my body, I felt fit and strong and young. And now I can't do cardio obviously because even walking up stairs is almost too much for me.
But I know already they won't find anything, they'll send me away not knowing what's wrong, which will cause me to doubt myself like it did last time.

I'm so tired of this. Tired of doctors telling me I'm too young to have certain issues when it's a fact that I have them.
And obviously now because of the physical problems I've fallen into a depression, which in turn makes me feel worse physically, weak and even more tired, which the doctors will only use as proof that I'm physically healthy.

Maybe this is not the right forum for something like that, but I find it's the one where people are most helpful and kind.

I don't know if there is anyone here who has experience with heart conditions, either themselves or as a doctor, and can tell me why I have issues that don't show up in tests but are definitely not imagined...

I don't know exactly what I'm looking for, but I'm so frustrated right now and needed to tell someone.

 

[Nessa7]

I'm not a doctor. I just have a grandfather that deals with chest pain who has me handle his medical stuff. Please try not to get too down before the EKG and ultrasound. If it wasn't a heart attack, that seems to be when they find out the useful information. I would take the doctor ordering the ultrasound before getting the results of the other tests back as a sign that she's taking it seriously. It really sucks that you have to wait so long.

Not being taken seriously by doctors sucks. Before I got a new doctor that I like better, I used to have a man call the office for me because they'd take him more seriously than they would take me as a disabled woman.

 

[Sideways]

When I asked what it meant he acted all dismissive, said it was harmless and shouldn't bother me until I'm 70.

This is true for a lit of people with bicuspid valves, but there’s still a significant portion who do develop issues earlier. So it’s one of those conditions that it’s worth having a cardiologist monitor, particularly if you’re getting symptoms like fatigue or breathing difficulties from exercise.

 

[BlueBerry6999]

I'm not a doctor. I just have a grandfather that deals with chest pain who has me handle his medical stuff. Please try not to get too down before the EKG and ultrasound. If it wasn't a heart attack, that seems to be when they find out the useful information. I would take the doctor ordering the ultrasound before getting the results of the other tests back as a sign that she's taking it seriously. It really sucks that you have to wait so long.

Not being taken seriously by doctors sucks. Before I got a new doctor that I like better, I used to have a man call the office for me because they'd take him more seriously than they would take me as a disabled woman.

Thank you!
It really is annoying to be a woman sometimes... and I guess the disability makes it worse... I read the most horrible stories by women who were denied proper treatment because they weren't taken seriously.
Also when it's known to the doctors that you have mental health issues it's hard to be taken seriously. My dad was told 'no wonder he had a belly ache after losing his job and his girlfriend'. Turned out it was liver cancer and because they didn't check him soon enough, he died.

I don't want to complain too much about my doctor, she's been quite good to me so far. Although she barely believed me when I told her about my PTSD.
I actually had to change doctor too. My previous one told me that I was too young to have the breathing problems I was having. After changing doctors it turned out the inhaler she had prescribed me was at fault.

Anyway, I guess I know I shouldn't overthink this and just wait for the results, but it's not easy. Thanks for replying though, feels good to have someone listen.

 

[BlueBerry6999]

This is true for a lit of people with bicuspid valves, but there’s still a significant portion who do develop issues earlier. So it’s one of those conditions that it’s worth having a cardiologist monitor, particularly if you’re getting symptoms like fatigue or breathing difficulties from exercise.

Yes... the doctor in the ER told me I should get checked once every ten years. That makes me feel a bit better about the tests they're doing now. I can always just refer to what that doctor told me instead of explaining my symptoms...

 

[DarkVixen]

I'm so tired of this issue. Sorry in advance for the longer post, but I need to explain the story behind my heart problems.

When I was 15 my doctor heard a heart murmur by accident. An x-ray showed an enlarged heart and he sent me to a cardiologist who diagnosed me with bicuspid aortic valve. When I asked what it meant he acted all dismissive, said it was harmless and shouldn't bother me until I'm 70.

I smoked occasionally and at 18 I started having problems when smoking. Once my heart started racing at school and I had to sit down. Everyone else panicked (I didn't) and my teacher ended up driving me to the ER, where the doctor told me everything was fine but that with the bicusdpid valve I should stop smoking and taking ecstasy and start working out.

I stopped smoking and started going to the gym, where I was surprised by how well I could actually exercise. Over time though (after a couple of months) I started being out of breath much sooner and started having heart palpitations while doing cardio. I decreased my exercise but it didn't get better. I remember times when I had to sit on my bed for an hour after working out because I was too dizzy and exhausted to move a limb. So I stopped working out altogether.

This was almost ten years ago. My overall health wasn't bad, I could do things like hiking without any problems. I've also had a dog for three years now and I walk her a lot, but in the last couple of years I never did intense cardio.

Then 14 months ago I started going to the gym again to help with stress and strengthen my immune system. Again I was surprised by how fit I was, but from the start I noticed that I always got really cold when doing cardio, even though it should be normal to feel warm when working out.
Then a couple of months ago I started feeling really itchy, having pins&needls feelings in my chest, arms, belly and upper legs like when you spend too much time outside in the cold and then come back into a warm room.

Then two weeks ago I felt normal at first but right after cardio I felt really dizzy, my vision was blurred, I felt high and had brainfog similar to what I had with covid. I continued my workout, thinking I had low blood sugar. Then at home it hit me at once, I was completely exhausted, couldn't move a limb, my hands and even my tongue felt numb, my feet and hands were ice-cold, I had brainfog and was sooo tired. My husband cooked dinner and I thought I would feel better after eating, but I didn't.
I thought due to the exhaustion I would sleep like a stone, but instead I had heart palpitations all night long and couldn't sleep at all. The next day I still felt dizzy, couldn't concentrate, felt extremely tired and felt a light stabbing pain in my chest in different places.
It took about 24h until I felt better.

A week later I still went to the gym because I wanted to make sure it was because of the workout and not just a coincidence. From the start I was out of breath. I wasn't scared or anything, I didn't feel like I couldn't breathe. Basically I felt like I could breathe well except not as much air as I wanted. Like something was restricting my lungs from getting as much air as I usually get.
I ended the workout prematurely and still had the same kind of collaps with dizziness, numbness, feeling cold. This time the stabbing in my chest was much stronger and also it felt like there was a fist around my heart, squeezing it together.
I went to the doctor the next day and she checked my heart and said she heard a heart murmur but she didn't believe it was a heart attack (which I'd never said it was anyway).
She scheduled a lot of appointments for me, for blood works, blood pressure, an exercise EKG and a heart ultrasound, but they're really booked out so I only get the EKG next week and the ultrasound at the end of February.

Now the problem: doctors always act so dismissive when it comes to heart problems. Especially because of my PTSD they know I'm in therapy.
I had the blood pressure thing this morning and the assistent who did it told me everything was normal, I must've clamped something in my back when working out and that sometimes "when we think too much about it" we get these symptoms.

Now I feel like shit. After the second collaps it took me 5 whole days to recover. I could barely walk up stairs, I felt out of breath even when walking my dog. I was in no way anxious, I haven't had a panic attack in years and I know the difference between a panic attack and physical symptoms by now. I mean, I was completely calm all the time, my thoughts weren't panicky, my heartbeat was slow, I never felt like I couldn't breathe, I just got out of breath quickly when doing physically demanding things.

And now this woman told me basically that again everything is in my head?!
I haven't had the EKG yet, but I already feel like it'll show nothing anyway and they'll just tell me I'm imagining symptoms.

I just cried my eyes out because I really don't have the energy to deal with this shit on top of a depression I'm going through and fertility problems. The one thing that made me happy in the last year was that thanks to going to the gym I felt good about my body, I felt fit and strong and young. And now I can't do cardio obviously because even walking up stairs is almost too much for me.
But I know already they won't find anything, they'll send me away not knowing what's wrong, which will cause me to doubt myself like it did last time.

I'm so tired of this. Tired of doctors telling me I'm too young to have certain issues when it's a fact that I have them.
And obviously now because of the physical problems I've fallen into a depression, which in turn makes me feel worse physically, weak and even more tired, which the doctors will only use as proof that I'm physically healthy.

Maybe this is not the right forum for something like that, but I find it's the one where people are most helpful and kind.

I don't know if there is anyone here who has experience with heart conditions, either themselves or as a doctor, and can tell me why I have issues that don't show up in tests but are definitely not imagined...

I don't know exactly what I'm looking for, but I'm so frustrated right now and needed to tell someone.

Obviously you are having symptoms of something. Doctors telling you its nothing, should just say I don't know.

It's wrong to be told we have ruled everything out when there are so many things that can be seemingly unrelated but cause the same symptoms. As an example, I experienced what you described. I was told by an ER doctor to quit smoking and left to suffer. The cause. Low iron and all I had to do was take iron supplements.

Doctors should just say I don't know, when they don't know.

 

[BlueBerry6999]

Absolutely! I think there must be a connection to other conditions as well in my case. PCOS, auto-immune disease...

As expected, the EKG showed nothing. But now I've been having troubles sleeping for 3 weeks because my heart always starts racing when I'm about to fall asleep. Don't know if it's stress or the heart itself.

 

[DarkVixen]

Absolutely! I think there must be a connection to other conditions as well in my case. PCOS, auto-immune disease...

As expected, the EKG showed nothing. But now I've been having troubles sleeping for 3 weeks because my heart always starts racing when I'm about to fall asleep. Don't know if it's stress or the heart itself.

It could be anxiety. I like to listen to relaxing sounds like thunderstorms or the sound of the ocean when I am going to sleep. It gives my brain something to do instead of thinking, so I can go to sleep. I know some people like to sleep with a tv on or youtube videos playing on their phone beside them or a radio playing. From what you said thou there's something else going on but you could try setting the mood for sleep and see if that helps.

 

[BlueBerry6999]

It could be anxiety. I like to listen to relaxing sounds like thunderstorms or the sound of the ocean when I am going to sleep. It gives my brain something to do instead of thinking, so I can go to sleep. I know some people like to sleep with a tv on or youtube videos playing on their phone beside them or a radio playing. From what you said thou there's something else going on but you could try setting the mood for sleep and see if that helps.

Thanks for the tip!
I don't think it's "normal" anxiety in my case, as my mind feels entirely calm when it happens. It's usually when I'm about to fall asleep or have already been asleep for a few minutes when it suddenly happens. I also get adrenaline rushes. I've spent hours meditating and managed to relax my body, yet the adrenaline and heart palpitations still happens. I thought it must be stress but my cortisol is normal (did a blood test). I don't know if it could still be some sort of stress, but I feel like I can't get it out through relaxation alone. I'm considering alternative therapy like kinesioligy to release the stress...

 

[DarkVixen]

I don't know if you mentioned you have a fitness band that tracks your heartrate. When I was having all the same problems, its easy for other people to convince you its all in your head. So I didn't trust my own judgement. I got a fitness tracker and it helped relieve the stress about omg am I having a heart attack. How fast is my heart going. The tracker helped to ease some of my worries because I could actually see how fast my heart was going and I could see with rest, it coming down. Strange cause I was hitting 140 just sitting still but it helped me calm down because I could see it was spikes and not continuous. It also helped me feel better it wasn't all in my head and to track when it spiked and what caused it. I hit 177 one time and I truly thought I was having a heart attack but having the fitness band I could see as I sat down and rested, my heartrate come back down. But I get you. It's frightening at times.

I also discovered something about people who suffer chronic anxiety, which is probably most people here. They/you can see anxiety from your heart rate when you are sleeping. For people with chronic anxiety your sleeping heartrate is higher then what it would normally be. With my iron levels good. My sleeping heartrate is the same as my average heartrate when I am awake, except its more a flat line with very little spikes. My lowest heartrate is never when I am sleeping. My lows happen when I am awake. Strange but apparently thats anxiety. Normally your lows are when you are sleeping and it stays low the whole time. How I dream of such a relaxing and probably restful sleep. I am so jelly.

 

[Friday]

I don't think it's "normal" anxiety in my case, as my mind feels entirely calm when it happens. It's usually when I'm about to fall asleep or have already been asleep for a few minutes when it suddenly happens

Had a sleep study, yet?

 

[BlueBerry6999]

I don't know if you mentioned you have a fitness band that tracks your heartrate. When I was having all the same problems, its easy for other people to convince you its all in your head. So I didn't trust my own judgement. I got a fitness tracker and it helped relieve the stress about omg am I having a heart attack. How fast is my heart going. The tracker helped to ease some of my worries because I could actually see how fast my heart was going and I could see with rest, it coming down. Strange cause I was hitting 140 just sitting still but it helped me calm down because I could see it was spikes and not continuous. It also helped me feel better it wasn't all in my head and to track when it spiked and what caused it. I hit 177 one time and I truly thought I was having a heart attack but having the fitness band I could see as I sat down and rested, my heartrate come back down. But I get you. It's frightening at times.

I also discovered something about people who suffer chronic anxiety, which is probably most people here. They/you can see anxiety from your heart rate when you are sleeping. For people with chronic anxiety your sleeping heartrate is higher then what it would normally be. With my iron levels good. My sleeping heartrate is the same as my average heartrate when I am awake, except its more a flat line with very little spikes. My lowest heartrate is never when I am sleeping. My lows happen when I am awake. Strange but apparently thats anxiety. Normally your lows are when you are sleeping and it stays low the whole time. How I dream of such a relaxing and probably restful sleep. I am so jelly.

A fitness tracker is a great idea! I've never been afraid of a heart attack, but the heart rate trackers they have on the tread mills are really bad. My heart rate usually gets down quite easily after cardio, which shows me that I am in fact quite fit. The problem is not even during cardio. I usually feel great and fit while running, but then afterwards I get brainfog and feel extremely tired.
I'm getting lots of tests done atm because of my PCOS. I have very high testosterone levels but I don't have any of the other PCOS indicators and the specialist told me that it's a mistery why I have it in the first place. Anyway, my husband said something interesting: that with that much testosterone, it's like I'm constantly doped and maybe don't feel that I'm overexerting myself when working out, which obviously isn't healthy.
I'll make sure to get a tracker in any case.

Interesting about the heart rate at night! That makes sense... it's what I meant with it not being "normal" anxiety, as in the anxiety you can clearly feel since it's also in your mind. I mean, PTSD shows up in scans - so it's not surprising that it must be somewhere in the body and haunt us when we least expect it.