Hi, It's hard to say if what your experiencing is related to you PE or if it's a completely separate issue. Hopefully the cardiologist will be able to get to the bottom of it.

Has anyone considered possible GI issues? It's a long shot but sometimes things going on in your upper and even your lower GI tract can feel like it's heart/chest related.

Try to stay calm and see what the cardiologist says. There are other test they can do on your heart that may shed some light.

Have they done a d-dimer? Are you currently on blood thinners? I'm pretty sure I had a PE previous to the batch that actually got diagnosed, and they missed it on the CT.

I'm also wondering if you've been treated for anxiety. I don't think that's to blame for all your symptoms by a long shot, but it could be causing some of them. Might be helpful to see what happens if you take a Xanax when you get an "attack." If some of the symptoms go away, you can focus on the ones that are left.

I mean, I'd be a mess in your situation for sure, so I have to look at anxiety for some of the symptoms. I'm also not sure that any of this has to do with the PEs, but of course you can't overlook that. Good luck! Hope you figure out what is going on.

I am wondering if your history of PE is a red herring that is leading the docs to focus on the wrong thing. Other than the shortness of breath it doesn't sound much like a PE kind of issue to me - and it's possible the shortness of breath is just cropping up because your body is not as resilient due to the previous PE so you experience shortness of breath when your body is stressed by something else. (Partly I am asking this because my sister had that exact problem the other way - she, and the docs, focussed on her asthma as the cause of her shortness of breath, which led the ER docs and her GP to miss a PE for three months... Unfortunately the human brain has a tendency to see what it's expecting to see, and miss what it should have seen.)

I would go back to the doctor and ask "What else could this be?" and "If someone my age showed up with these symptoms other than the shortness of breath and no history of PE, what would you look for?" I am not a doctor but the things that pop into my mind for the symptoms you've mentioned are things like esophageal spasm or reflux, ulcers, gallstones or even a food allergy cropping up like celiac disease, or something like an aortal aneurysm or arterial dissection (though that should have shown up on x-ray or CT I think). I guess like rmb from your symptoms I'm quite suspicious that it's some kind of GI issue.

The good news is that at your age it's overwhelmingly likely to be something innocuous in the end, though I'm sure it's tough to trust that when you already won the crap lottery once with your PE.

I agree. I think when we go to the ER, they are assessing the urgency of the symptoms and are going for obvious possibilities that require immediate care, like a heart attack or PE . The ER is the place to go when having chest pain and shortness of breath. But they are likely not going to look for all the other non critical possibilities, like GI issues, or anxiety or other variables that may cause chest issues. For instance, anemia can sometimes make it feel like your chest is hurting and you have shortness of breath.

I'm certainly not dismissing your fears. I'd be scared too. But just consider that there could be other things going on that are causing this and it may not be as serious it feels. If it is, the cardiologist will be able to confirm whether it's heart related or not.

I also agree with Toss. Any anxiety you may have may be heightening your symptoms. Or, even causing some of them. I don't like blaming anxiety specifically but it certainly can be a part of the equation. Did they mention anxiety or panic attacks when you went to the ER?

Just reading back over your symptoms, I noticed that you feel worse after eating. That's definitely a cause/effect to look at. I wonder if you've been looked at for celiac disease or lactose intolerance or other food allergies. Celiac, in particular, can really make you feel awful, and is commonly mis-diagnosed, even by gastroenterologists. If nothing else, I'd maybe track what you're eating and when the symptoms seem their worst, you might find a pattern that gives you some clues.

Me personally, it took me about a year to figure out I was lactose intolerant. It took nearly passing out in a grocery store after eating a milkshake, but I did figure it out eventually.

Good luck to you!

Sorry for the late response, i assume its related to a PE Due to me having the same symptoms The first time i was diagnosed with A pe was back in 2013 it took me a good 5-6 months to get back on my feet. i had headaches that lasted days chest pain was always there. i was to weak to do anything, i would have to sleep with pillows behind my back due to me feeling like i was going to drowned. shortness of breath, while taking deep breaths i would get a stabbing feeling by the ribs. 2 years pass i was back to normal and then its like part 2 but this time my lungs get cleared by a cat scan so docs are telling me its not A PE.
they have done multiple d dimer test and I'm normal i am not taking blood thinners i was for about a year but due to hematologist clearing me with multiple blood work a clotting disorder isn't in my genes so he decided just a 81mg aspirin daily would be fine daily. i also take alprazolam for anxiety but i can't say it helps I'm sure this isn't anxiety. theres something wrong and doctors can't figure it out. I'm sick and tired of pointless er visits. At this point I'm not sure what else to do. maybe i shouldn't have left the blood thinners. i was perfectly fine before my pe which was caused by knee surgery .i have a huge feeling it has to do with the past PE

Excuse my grammar, today has been a real bad day

I think if your ct scan was normal and your d dimer was normal, then you don't have a PE and so whether you should have stayed on anticoagulants isn't relevant. Also why stay on an anti anxiety medication if it's not working? If what you're experiencing right now isn't part anxiety, at least if you're on anti anxiety meds that help you, it could make this all easier to cope with.

When you've gone to the ER and they rule out a PE and heart attack, what do they suggest is going on?

Were you diagnosed with heart problems at the time of your original PE diagnosis?

When is your follow up appointment with the cardiologist to review the results from the heart monitor your wearing?

The fact that you can't work, sleep or function, is that due to fatigue or pain or not being able to breath?

If your d-dimer is negative, it pretty much can't be a PE. Possible it's it's a fat embolism, or an air embolism, but those should come up on CT as well.

Have they done a cardiac workup?

For the most part, I'm agreeing with the suggestions the others here have made, but I want to comment also because I have been diagnosed with long-term complications from PE, so I want you to know that you're hearing advice from that perspective as well.

Being as that you've ruled out PE and DVT with the CT scans and d-dimers, then you should really just lay that to rest for the moment - there's no reason to continue thinking about whether you should have stayed on anticoagulants and worrying about that decision, because obviously clotting is not the issue.

If doctors haven't found out what the problem is, then I agree that most likely they're looking in the wrong place. They're going to check for clots and heart issues immediately because of your history combined with your symptoms and, quite honestly, because you're male. I bet anything that if you were a woman going in with the symptoms you're describing, they'd be doing GI workups rather than cardio workups. It makes sense to check cardio first because of your history and because it's most urgent if that's what you're having. However, it appears that an emergency cardiac problem isn't what you're having, because they've checked already for it. So as I said, lay that to rest for the moment.

The next thing that makes the most sense is to investigate whether it could be something digestive, because symptoms from gall bladder, stomach ulcers or appendix can cause pain similar to what you're talking about, particularly as you're saying how you have nausea and vomiting on a regular basis. I have celiac disease, and if that's not taken care of, yes it makes your whole body feel really unwell, in addition to causing terrible pain every time you eat. Are you working with your regular GP on this? Because it doesn't make sense to just keep going to the ER and expect them to go through the whole process that your GP will. Medicine is often the process of elimination - they start with the thing that seems most probable and/or dangerous, then if that's not it, you have to move on to the next most probable thing, which is probably to consider digestive issues.

I also think you can't overlook the role of anxiety in what you have going on. I'm not trying to dismiss what you're experiencing, however, you said you're already on anxiety medication, so apparently you have issues with that already. I agree, if you feel that the medication for anxiety isn't working, then why are you continuing to take it? Have you been on it long enough to really know that it's not helping or have you just recently started it? Medication for anxiety and depression can cause weird symptoms if it's not necessary or just the wrong one for your problem, and that in itself can be a process, figuring out which medication works for each person while causing the fewest side effects.

I'm not just dismissing your symptoms and concerns in favor of saying, "Oh it's just anxiety." But based on what you're saying here, the way you describe things, I think anxiety is part of the equation. Like the physical symptoms might be 50% of the problem and anxiety is the other 50%, amping everything else up. Also, remember that anxiety alone can cause real physical symptoms which can easily be confused with other problems. But take a second and think objectively about how you're describing things: "no one can figure out what's wrong" (this is really jumping ahead of things here, because they've only checked into heart/clotting, so maybe they need to check something else); "can't sleep" (which will make anyone feel worse emotionally and physically, also can you not sleep because the pain is too intense or because you're worried); "can't exercise" (this will make you feel down emotionally when your used to exercising, and again, why can't you exercise, is something particular happening when you do); "thought my heart was giving out" (that sounds like a really extreme emotional reaction to whatever you felt physically). I notice you also posted this exact same question on the heart failure support group - again, that's a fear which your mind has jumped to out of your anxiety. Most people who get chest pain don't assume immediately that they're heart is failing, and symptoms of heart failure are really quite different than what I see you describing here.

Please understand, I'm not saying you're not experiencing some physical problem. But I do think it sounds as though you are allowing anxiety to take over the whole show, so probably the best first step for you is to get that under control (even if it's just through stopping yourself to evaluate yourself physically - like is your breathing shallow because you can't breathe deeply or because you're scared? Often if we stop and think about our breathing, we can control it and it settles down the other symptoms). When the stress and anxiety is controlled, you can determine what you're actually feeling physically. Then it will make it easier for your doctors to identify the real problem. Also, PTSD can really jump out of apparently nowhere. You can think you're fine for a long time, but if you've buried a difficult experience, usually it needs to surface at some point, and it can make you feel like you're experiencing that initial trauma all over again. So you say this isn't anxiety, but it could be possible it's just a type of anxiety you haven't experienced before.

As I mentioned at the beginning, I do have long-term problems from the PE, so I know what it's like to go through the long process of figuring everything out. But I'll tell you one glaring difference between my experience and what you're describing is that I never had any period where I felt I had gotten well after the PE and had left that whole thing behind. I have been in a constant process of trying to push myself to be well and have a normal routine and activity level, but I've never gotten to a point where I felt comfortably normal again. You say that you've felt well physically for a couple of years, so to me, that's a really good indication that as far as your heart is concerned, things are probably more or less okay. There are some tricky little things that could be possible, though not necessarily connected to the PE, but the Holter monitor should show up anything like a-fib or irregular heartbeats, and your cardiologist will let you know if that's the case, then you go from there.

I wish you well and I hope that you will figure out what's going on and get it resolved.