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sb4

Heart Attack

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Since my POTS has gotten more extreme, I think I have been on the verge of a heart attack several times. I get really weak, heart pounding painfully, numb tingly arms and legs, left arm and chest very achy, light headed, trouble breathing, feeling of impending doom, and anything stressful (loud sound, etc) causes me great suffering (heart feels painfully drained and condition worsens).

 

I am 26 so should not be getting these symptoms. I've read of other people with pots having heart attacks and am wandering how often it happens?

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I have exterior etopic heart beats.  After my Neurolgy diagnosin, I get a full checkup from a cardiologist. Stress test, nuclear sresss test, halter monitor, and cardio catheterization.  All normal.

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I'm not aware of POTS patients having heart attacks. Have you had your heart checked out by a cardiologist? I have been checked with all kind of test by my cardio just to make sure he didn't overlook anything. Fortunately my heart is happy and healthy! It turned out my symptoms are POTS and I'm comfortable knowing this as my cardio did what he could to make sure nothing else is going on.

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POTS/dysautonomia is an autonomic nervous system condition.  It shouldn't lead to a heart attack - and I agree with corina, I don' t know of anyone that's had one because of POTS.

It's pretty common after getting diagnosed to notice irregular heart beats and chest pains.  I woke up many times in the middle of the night with severe tachycardia and sweating. I went to the ER a few times because of this.  It's normal to feel scared and panic with these types of symptoms at first. I know I did.  But you get used to it.   Getting a cardiac workup like Alex mentions will confirm and give you peace of mind.

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I basically agree with Corina. POTS patients can have heart attacks, like anyone else, but, I have never read that POTS patients have a higher incidence of heart attacks than the general population.  

I also experience most of the physical symptoms you are describing to varying degrees depending on how severe my presyncope becomes. I don't get the feeling of doom but many members have previously described this in past threads.

If you haven't had complete cardiac testing, i.e. EKG, cardiac echo, exercise stress test, nuclear stress test, Holter or event monitor, to verify that you have a healthy heart, I encourage you to speak to your doctor about that. I felt infinitely calmer when I had these extreme symptoms when I knew that it was POTS and not something wrong with my heart. 

Also,  if these are new symptoms, please consult your doctor or go to the ER. While it may very well be POTS, any new cardiac or neurological symptoms should always be discussed with a doctor.

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Hi sb4, as has already been mentioned it may be a good idea to get your symptoms checked out. I had some very severe periods of chest pressure that would last days even months at a time - some of the time where I would basically just lay in bed all day and didn't want to be around people or noise because it might exacerbate symptoms. I basically went to the cardiologist and they did the month long holter monitor, did a stress test and bubble echo, and a few ekg's but everything showed up normal (except that I have a PFO) despite how it felt. In my case my doctors said it was probably related in some way to my POTS, possibly a microvascular angina and I've been taking cc blockers which helped bring me back to feeling normal. That being said, at least with the testing it helps rule out anything more serious. I was 27 at that time.

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Thanks for the replies.

I have heard that sympathetic overactivation and parasympathetic underactivation is the cause of heart attacks and I feel this is the cause of my pots. So shouldn't it follow that I am more likely to have one.

Also it's not bog standed pots, I've had that for 5yr. It's hard to explain as when I write it down it doesn't sound anywhere near as bad as it is. However it's exactly how I'd imagine a heart attack feels like.

I had various heart tests in hospital 6 month ago and thankfully they came back fine.

I am sure I have read somewhere of people with pots having heart attacks they attribute to POTS. I think it may only apply to those who have sympathetic overactivation.

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Anyone who has hyperandrenergic POTS has sympathetic overactivation and I still have never seen evidence that they have a higher incidence of heart attacks than the general population. 

I totally get what you are saying about feeling like it's a heart attack. It mimics every symptom they describe as when you should go to the ER for a heart attack.  I, in fact, have asked doctors how would I be able to tell the difference, and frankly, have never gotten a straight answer. 

I think this phenomenon of feeling like you're having a heart attack can cause some anxiety.  I know it used to for me. I'm used to it now and so the anxiety is no longer an issue for me. I think the most important thing for me was hearing that my heart was healthy. 

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@Katybug thank you. It's reassuring however I am still worried it's possible as I have been really pushing through it for 5yrs now, working when heart was constantly pounding hard 130bpm+ all day. I knew something serious was up but didn't know what and needed money. Suprised I wasn't fired.

Also I have been progressively getting worse with this and nothing is stopping my decline. If I get any worse I cannot see my body being able to cope.

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I have seen some articles which mention sympathetic overactivity and heart failure, not heart attack.  Maybe that is what you remember seeing? 

Just like many of us, you've had several of these incidents and made it through.  You've had a workup which came back clean.  These seem like good signs, but the best thing is to discuss these symptoms with your doctor ASAP to make sure.   

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Here is a link to the American Heart Association Journals explaining POTS.  It's fairly comprehensive and makes no mention of heart attacks even when explaining hyperandrenergic POTS.  Maybe this will help settle your fears as this organization would likely mention any concern of heart attacks. 

http://circ.ahajournals.org/content/117/21/2814

I have definitely had POTS for 9 years (almost 10) although I think I had milder symptoms that I was ignoring for several years before that. I worked 70-80 hours a week in a high stress financial industry environment and I trained horses for competition as a secondary job/hobby. Competitive riding is an extremely high aerobic activity as well as a strength building activity. I also hiked rough terrain every weekend. My dog (a working breed) and I walked a minimum of 1.5 hrs/day split into 2-3 walks. I continued these activities for the 1st 3 years of my acute awareness that something was wrong with my health. I continued the hiking, dog walking, and riding to a lesser degree for 3 years after that. There were times prior to getting my diagnosis that I actually questioned if I should call an ambulance because I thought I had pushed myself to a heart attack or stroke (because I would have neurological symptoms too). But the episodes always resolved. My health issues have worsened over the remainder of those years and I have had to stop most of those activities. I am just now finding some meds that are promising and have a plan in place to slowly resume my physical activity. But, it's complicated and the meds are not without issues and limitations. I don't feel normal....I just feel like I can give it a go, again. I am realistic in my expectations and know that I will likely not regain my full function, and, that I have to be very careful in my approach or I will cause myself a setback. If I overdo, I still get the heart attack /stroke type symptoms. 

I'm not trying to deny or diminish your feelings. I've had them, too. I just know that for me, being able to talk to myself rationally that my symptoms were consistent with my POTS diagnosis, what the research said I would experience,  and what my fellow POTSies experience, helped me to remain calm during even my worst episodes. And, that, in turn, helped reduce some of the symptoms I experience during a severe episode. 

I also draw on my knowledge of meditation, and even more, meditative breathing. Meditative breathing can be done at any time even when you aren't doing a full meditation .  Meditative breathing has been proven to help people who have progressive heart failure. My POTS neuro specifically encourages use of meditative breathing as it calms the sympathetic responses. This may be something you want to learn.

Also, a great book to get started with meditation and mindfulness is, "Wherever You Go, There You Are", by Jon Kabat-Zinn. It has short chapters that are easy to read (great for the brain fog that comes with POTS). It also has a little "everyday" meditation exercise you can do at the end of each chapter. They are meant to be things a busy person can work into their life so they don't have to dedicate specific time for meditation. They are also things that are easy for a POTSie to do. Counting your breathes, counting your steps, visualizing your favorite vacation, etc.. 

I'm so glad you are talking about this. I think a lot of POTS patients go through what you are going through right now. I hope this discussion is helping you and know that it is probably helping someone else too. 

Edited by Katybug

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Thank you. I am reasured. I have already adapted deep breathing and meditation into my bag of tricks, it is useful. It's just difficult to fully trust it won't happen, it's our life and we only need to be wrong once...

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I had very similar symptoms 15 yrs ago when I first developed significant POTS symptoms.  I was told I was having panic attacks as my heart checked out completely fine.  It took months for me to be diagnosed with POTS.  I think for some of us can have symptoms that mimic panic attacks.  It does feel terrible-- I can still remember that feeling.  These days I don't get such symptoms anymore.  At the time I did find breathing exercises and also biofeedback to be quite helpful. 

 

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Honestly and this is just me, but for years I had severe panic attacks that felt exactly like that. Thought I was having a heart attack too, the impending doom is the big indicator because I genuinely thought I was going to die. I was having adrenaline surges with my hyper pots which I now take propranolol for. Works wonders

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POTS symptoms also have a lot of overlap with panic attack symptoms, and they feed into each other and make each other worse. So when you get POTS symptoms that are concerning (chest pain, pounding heart) your brain goes "wait, what's happening? something's wrong" and it triggers anxiety which also has symptoms like shortness of breath, tingling sensation, sense of impending doom and feeling like you're going to die. And just to reassure you, you can't die from a panic attack; in fact it's extremely unlikely you'd even faint from one.

Please don't misunderstand me, I'm not saying all you are experiencing is anxiety, but I know from having both POTS and Generalized Anxiety that going to therapy and being on anti-anxiety meds has been really helpful in knowing what symptoms are from my anxiety and which symptom are because of POTS.  Knowing this difference helps me manage both. Hope this helps.

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