I Don't Think I Have Pots

[SeattleRain]

My doctors want to nudge me into this loose, suggestive diagnosis of autonomic dysfunction/POTS based on my TTT.

The problem is, I'm convinced it's something else.

Has anyone here had a chest MRI or CT scan to rule out heart problems? I'm convinced it's a problem with my heart. The only thing I've had done in this regard is a stress echo almost 9 months ago referenced by a cardiologist who I don't hold a very high opinion of.

Can anyone suggest tests that would rule out heart issues (not electrical)?

Thank you

[AussieOI]

Hi Seattle Rain,

The question you raise is interesting and certainly was relevant to me. I developed NMH largely after an issue with my GB/liver last year where I was in bed for abt 2 months. When I got over that I started getting symptoms such as feeling very faint, chest pain, palpitations etc I has seen a cardio about a year earlier and he had done a echo/cardio which was clear. Anyway when I went back to him last year with these issues he did an angiogram on me. This is basically the gold standard in sussing out if there are any blockages in the arteries etc. It was clear. I continued to have these issues and was then given a holter monitor which checks for arrhythmia's etc That was clear. Then I had a TTT and all was revealed.

The symptoms of POTS/NMH etc can be similiar to heart related issues etc. My personal opinion is that it is very important to rule out heart related issues. You def need to find a cardio that you are comfortable with. See what they say and if they reckon you need any of these tests then go for it.

Was you TTT conclusive last year eg did your bp and/or heart rate change in an abnormal way?

Aussie

[misstraci]

Seattle, I feel exactly like you do. I just feel like something else is going on and I also feel mine is heart related. I was going to have a nuclear stress test (didn't work out) but supposedly it is very informative and less invasive than a cardiac catherization, which is supposed to show any blockages, etc. Maybe you could ask about one of those.

[Joann]

I think that a lot of us feel like that or have felt like this. Last year when this began, I kept asking are you sure its not angina or my heart, could a blockage cause this?. I was told my heart was strong. Of course, they didn't bring up POTS, they were insisting it was GI and anxiety.

I still think its possible this isn't "just POTS" but I am no longer sure what it is. I definitely qualified for a POTS diagnosis, but my bp is high and much more reactive than my heart rate, and anyways, many odd things that are not like others on many of the posts. Sometimes I post things here and nobody responds with similar issues.

So I guess many of us are different and we just have to keep searching. Even if you have POTs,its a syndrome and it can have causes, so keep pushing for more information. It certainly can't hurt.

[bebe127]

Seattle Rain,

I know the road we have to take in finding out what is wrong can be a long one. So sorry you are having to go through this.

Is there any way you can see another cardiologist or an electrophysiologist? Maybe even start back at the beginning?

I've had EKG's, treadmill stress test, sonogram on arteries, CT Scan, sonogram on heart, holter monitor (21 days), and TTT (I think that is all) and through all that, they said that my heart is in tip top shape. I still have chest pain/discomfort most every day though. I even had one doctor tell me that my chest pain/discomfort had nothing to do with my heart, but he had no explanation for it.

Try not to give up. Only you know how you are feeling and if you think/know something feels wrong, keep up the search. Good luck and I hope you find some answers and relief soon.

Bebe

[Relax86]

I had nuclear stress test - neg. I wore holter monitor - neg. I had an echo - neg. I think lots of our symptoms mimic cardiac reasoning so closely. But part of my healing was being able to put the cardiac worry behind me. My cardiologist was a great guy and I trusted him. Getting the right tests by the right Doc was part of my healing and recovery that I've made up to this point. Good luck

[Mydoggielovesme2]

I agree with Relax86, so many POTS symptoms feel cardiac. You really need to rule out these before acceptance. You should have an ekg, echo, stress test, and holter monitor. These are usually the basic tests for heart related issues. If your Dr does not do these, then I would find one that does. So what were the results of your tests so far?

[boymommy3]

I can totally relate to your issue here. I haven't been formally dx'd but my GP is convinced of it and the neuro also told me he believes my symptoms fit, I read on here and feel like I could have written half the posts I see, have family (a SIL whose an RN) and friends who have read up on it and believe that's what it is, BUT.....I keep having this nagging feeling like "what if it's something else?"

I have had and MRI of my brain, an echo (2 years ago), multiple EKG's (all of which have been normal except one when I had low potassium), worn a halter monitor for 48 hrs, currently half way through an event monitor (wearing it for 3 weeks), and a treadmill stress test, and multiple blood tests.....ALL of which have been completely normal except for tachy, but it's been a normal sinus rhythm tachy! The only blood test I have had come back abnormal is slightly low TSH and low normal Vit. D. Two years ago I have very low VIt. D but not this time around.

I just keep thinking...seriously....how do I "look" so healthy and feel so bad!

I don't have the BP issues that many of you have but still experience the near fainting spells and lots of weakness. Especially in my legs. I am currently on 20 mg of Celexa, 50 mg of Metoprolol, Ativan .5 mg prn, and Gatorade. I KNOW that the BB keeps my hr down significantly, however, I do have times that I still experience tachy, but it's becoming much less frequent the longer I am on the BB. I also feel that the Celexa is helping but I am still not myself. I don't have much energy at all and I can't stay up late at all right now.

I pray you can get some answers and most of all I pray that you begin to feel better. It absolutely stinks being so sick and not knowing exactly why.

[jkoconne]

I have felt that same way. The my heart has an issue. It casues the most pain and symptoms these days and keeps getting worse. My cardiologist said if it presisted he would have me to an angiogram (spelling?) of my heart. The only reason he is currently not doing it is the large amounts of radiation the test causes. The other reason is my ekgs, ecocardiograms and haulter montior was normal (well tachy but normal beat).

Good luck!

[SeattleRain]

Thanks for the responses everyone.

To answer some questions:

I've had a ZIO patch, holter monitor and stress echo - all of which came back generally normal. I don't trust the first cardiologist at all so his interpretation of my stress echo is taken with a grain of salt. I'm unaware if my new cardiologist was able to give a second opinion based off of the ultrasound images or the "report" with estimates. If it's the latter, that's another reason I would like another stress echo (it's been 9 months anyways) or other imaging techniques that show my heart.

One of the POTS causes on DINET's list is "Nutracker Syndrome" which I believe is diagnosed with an MRI? Anyways, there seems to be other heart related issues that are diagnosed with other imaging techniques - not with stress echo.

The paranoia in me thinks I have some medical enigma where my valves or heart doesn't work right at certain times so they can't pick it up when I'm not having these "attacks". My symptoms aren't just tachy/brady/BP fluctuations. The most concerning is like this sliver/air bubble feeling in my heart, or like there's an infected cut somewhere on my heart that blood is leaking out of. Then when it gets really really bad I'll get a horrible STABBING palpitation thump that seems to try and correct whatever's happening. I have these attacks lying down mostly. Standing up I get tachy but often can be just the opposite. Another part of me thinks I could have ruptured something or bleeding internally, leading to low blood volume and my symptoms.