Questions About Symptoms

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I recently saw a cardiologist (Electrophysiologist) about my POTS. He said that my breathing issues and chest pain are not related to POTS, as those are not symptoms of POTS. Is that true?

Can chest pain and breathing problems be related to POTS?

Also, he said that my holter monitor test showed only mild sinus tachycardia, thus he said I have a mild form of POTS. Is it possible to feel horrible from POTS, even if the holter monitor doesn't show it? Or to feel like you are highly debilitated from it, even if the tests show you only have a mild form of it?

I don't think the holter monitor test accurately represented my POTS, because the day I did it was a fairly good day for me. Has anyone else felt their holter monitor test did not accurately show their POTS, or debilitation from POTS?

For example, I get bad chest pain, shortness of breath, temperature dysregulation, fatigue, and weakness, along with a few other issues, yet even though I experienced fatigue, shortness of breath, and chest pain when doing the test, the test still showed minor tachycardia.

I was diagnosed with POTS by a tilt table test. It was the chest pain and breathing issues that led to the tilt table test.

I guess my main question is: is it possible to have symptoms that don't match up with your heart rate and/or blood pressure? Or in other words is it possible to feel absolutely fatigued, or out of breath, chest pain, or dizzy even when your heart rate and/or blood pressure are only slightly tachacardic?

Thank you for any answers you can provide to my questions.

[Lemons2lemonade]

For me yes, my HR and blood pressure have been under control for about a month now, and i still get all of the other weirdo symptoms, including momentary chest pains and periodic shortness of breath--like i'm breathing through a straw. And lately, i have been exhausted. Like waking up from a night's sleep to go back to sleep.

[Wendy C.]

Yes, that happens to me, too. Sometimes I am surprised by what the blood pressure monitor and heart rate read, based on how crappy I feel at the time.

I also had the same problem with the Holter monitor that they gave me during my pregnancy. The day I wore it happened to be one of the 1-2 days per week when my symptoms were mild. My Electrophysiologist (different one than during the pregnancy) gave me a 30-day Holter in November and that was much better. It confirmed that I have PVC's (premature heart beats) quite often, but it was usually after eating a big meal or a sugary dessert. By avoiding those things, for the most part anyway, I've been able to reduce the PVC's. Also, I have finally gotten to the perfect dosage of magnesium for myself and that makes a big difference. I tried to reduce it a couple of weeks ago and the PVC's came back instantly.

Anyway, perhaps you could talk to your doctor again and say that the day you wore the monitor was not representative of your typical days and that you'd like to try the 30-day version of the monitor.

[Hope]

Of course I am not a doctor and I am not giving "Medical Advice", with that said... from what I have read in the past 8 months of my misery, the actual Postural Orthostatic Tachycardia in my course of illness is only a result of other things going on in my body. POTS seems to cause some of its own symptoms, but the bigger picture of dysautonomia seems to cause more symptoms than anything. And what causes the dysautonomia, of course is what everybody is trying to figure out. It also seems to be brought on for different reasons in different people, and reading what everybody has posted here is so helpful in narrowing these things down. What a God send this forum is! To hear what others have gone through or are currently going through and what's been tested for and what treatments have helped or have not helped really helps when comparing them to my own experience.

I, like a lot of people here, have a home blood pressure monitor with a heart rate monitor on it. Sometimes my symptoms correlate with the current readings. Other times my monitor readings are within a good range and I still feel symptoms that have just not affected my HR or BP.

[Christy_D]

I used to monitor my son's vitals and there was no rhyme or reason as to how they related to his symptoms. Sometimes when his vitals were completely normal he felt terrible and other times they were completely whacky and he didn't feel too bad.

My son has also experienced chest pain, no frequently but it happens. Last June, he had severe chest pain that we rushed him to the Urgent Care (we were on vacation) and they gave him a shot of prednisone that calmed it down.

Christy

[E246]

Sorry you are going through this and your experiences are not being acknowledged. It is very upsetting.

Yes, i get constant chest pain, have started to get short of breath and nothing corresponds everytime with the monitor. It's random.

Sometimes i feel very ill and this doesn't correspond to any great deviations with bp or hr. Sometimes it does.

[jenglynn]

I am convinced that I have had POTS, autonomic neuorpathy, whatever you want to call it my whole life- and it has come and gone. But I have never had a severe flare until almost a year ago, that I am still battling. Since I was a child, I was prone to syncope. Always told, "Well.. you stood up too fast" or "Some people just faint." Out of the blue, last April, I had a syncopal spell at work. From there, it just started progressing. I was dizzy a lot, pre syncope often, and fainting off and on. In June, I started getting the shortness of breath and breathing issues. I have NEVER had those in my life and they were the scariest WORST symptom of all, and I still think that (well, the adrenal surges/anxiety aren't a lot of fun either)... But that is when I got serious about investigating what on earth was going on. First I got diagnosed with anxiety, then asthma, then who knows... but when I was up walking around (which I am no longer able to do- but I still get this to a degree when I crawl) my shortness of breath was HORRIBLE. I could climb a flight of stairs without feeling like I was going to pass out from the exertion. It took a while, but we finally figured it out. Of course, I AM NOT A DOCTOR, but I think you can most definitely have shortness of breath, breathing issues, chest pain with this condition. I think it is listed on the symptoms on the DINET page. Maybe print all of that out for your next appt!

I am sorry you were dismissed like that. If your POTS isn't causing you to have breathing problems or be short of breath, is your doctor at all interested in finding out WHY? Seems a little irresponsible for you to report such symptoms and he would dismiss them and not follow up? I am so sorry you are dealing with this. After living a life free of breathing problems or allergies, asthma or anything of the like- it definitely opened my eyes to what people stricken with those conditions go through. Trying to breathe when you can't, or feeling like you can't get enough air in your lungs, is such a scary feeling. My son has asthma and I had a totally new sympathy for him and hugged him so hard after his next asthma attack because I knew how awful it felt and I was broken hearted that he had to suffer that way.

Jen

[AllAboutPeace]

It is my experience as well that chest pain and shortness of breath are POTS related. I'm not sure if blood pooling is an issue for you, but I find that actually brings on symptoms for me moreso than the tachy hr.

When I stand still for a minute, I start to feel lightheaded, lose my concentration/ability to focus, get dizzy, etc. and if I continue to stand my next symptoms are chest pain and shortness of breath. I have tested whether or not these symptoms are related to hr by doing deep breathing exercises which will reduce my hr by 10-15 beats/min. The symptoms that I listed still happen for me despite what my hr looks like and when I look at my feet and lower legs they are purple (because of the blood pooling there). So I think that is more of my issue.

I also can't sit with my feet down because the same thing happens.

[Chaos]

My HR and BP are frequently not a relection of how I'm feeling. For example today, my HR was back up to 124 standing, with palpatations I could watch vibrating my chest wall. But I really felt pretty good.

Conversely, I've had days where my vital signs are totally WNL but I feel like absolute garbage.

[HopeSprings]

Based on my tilt the Dr. called it mild POTS - I would not describe what I go through as mild. My heartrate only went up to 108 during the 10 minute test, but it goes much higher in my everyday life. As others said, my symptoms don't necessarily correlate with the numbers - I can feel horrendous with pretty good looking BP and HR.