Dysautonomia (Autonomic Dysfunction) Community
POTS, or something similar?
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This patient support community is for discussions relating to Dysautonomia (Autonomic Dysfunction) including: Postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope, mitral valve prolapse dysautonomia, pure autonomic failure, autonomic instability and others.

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POTS, or something similar?

Hi everyone. This is my first post here, so I'm sorry it's so long, bear with me!

I'm a 34 year old female. Lately I'm experiencing a really extreme version of symptoms that have been happening on and off for many years now. Fatigue, exercise intolerance, feeling faint/lightheaded, feeling of being short of breath, heart pounding/skipping beats, shakiness, nausea. Sometimes when I'm having tons of symptoms, there will be an adrenaline/anxiety component that kicks in, and I'll get really violent shaking/chills.

A few weeks ago this all suddenly went from just being bothersome to being completely debilitating. I just spent almost a full week in the hospital because I went to the ER with strong heart palpitations, feeling so weak I couldn't sit or stand up without almost fainting, feeling short of breath, mild chest pain, panicky feeling. In the ER my resting pulse was low 50s/60s, but when they had me try to stand up, it would shoot up to 115-120 range after a minute or so and I felt really unsteady/faint. But my blood pressure would stay fairly stable, or even go up slightly. (110/70 is pretty typical bp for me.)

The ER doc said I must be severely dehydrated (which sounded unlikely to me). They put me on an IV and pushed tons of fluids while I was there. Then they admitted me because they couldn't figure out what was going on.

I was there for 5 days, and was on IV fluids and a continuous heart monitor. When lying in bed, my heart rate sometimes dipped into the 40s, it even dropped into upper 30s a few times while I was asleep. Sitting or standing would usually make it go up to 90-100 or so.

I had a lung x-ray, EKG, a CT scan, an echocardiogram, all normal. A few days later they did a stress test. The stress test was awful. Within a few minutes of walking at the slowest pace, my heart rate was already most of the way to the target rate. We went to the second level, a slightly faster walking pace, and I reached 190bpm, was out of breath, and started feeling shaky, nauseous, and about to faint, so we stopped immediately. However, my actual heart function looked fine on the screen. So the only conclusion from all that was "exercise intolerance." Which I already knew.

A cardiologist came to talk to me, and basically said whatever it was, wasn't my heart, because my heart looked great. I do have a sinus arrhythmia that he said is nothing to worry about, I'm just noticing it a lot more when my heart beats faster.

They did a lot of other blood tests, but everything came back frustratingly normal. The only two tests they ran that I didn't get results back for yet are for cytomegalovirus and an ANA test. They sent those out to another lab and they somehow lost it, so I have to have those repeated through my primary care doctor this week.

The hospital let me go home, so I'm following up on my own now through my primary care doctor. She wants me to see another cardiologist for a second opinion and thinks I should probably see an electrophysiologist. That appointment is in about a week and a half.

So, again, very sorry for the long post, but here are a few questions I have right now:
Does this sound like an autonomic issue?
Would an electrophysiologist be familiar with dysautonomia?
Along with the ANA test, is there any other bloodwork I might want to ask my primary care doc to run while we're at it?
4 Comments Post a Comment
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Avatar_n_tn
It is good that you are going to see an electrophysiologist.  He will probably do a tilt table test.  You  might be suffering from a form of dysautonomia called POTS .  I have POTS and have the same symptoms as you.
Did they tell you to increase your fluid intake and to take more salt ?
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875426_tn?1325532016
Yes, it does sound like dysfunction of the autonomic nervous system.  Your rhythm is sinus in nature if I understand you correctly.  

An electrophysiologist SHOULD be familiar with the cardiac part of dysautonomia.

Ask the doctor about a norepinephrine test while standing and if they haven't run it already, a complete iron panel, even if your CBC (complete blood count) came back as normal.  (I've been iron deficient when my CBC was normal and felt it made my symptoms worsen- such as shortness of breath and worse tachycardia and I had fatigue.)  

To check regarding hypovolemia, you might ask for renin and aldosterone levels labs taken while standing (normally low in hypovolemic patients).  And another test in regards to volume is a 24 hour urine test for sodium level.

You may have to find a sympathetic doctor willing to order some of these tests (they hopefully will be willing to at least do an iron panel) or go to a center/doctor specializing in dysautonomia:
http://www.medhelp.org/tags/health_page/24603/Dysautonomia/Dysautonomia-Specialists?hp_id=717

You are, it sounds like, experiencing bradycardia (slower than normal) heart rate when you sleep and your heart is racing when you stand to prevent you from passing out.  The fact your blood pressure stays about the same or goes up a little shows your body is doing a good job compensating to keep you from passing out.

I agree with Maritza about P.O.T.S. (postural orthostatic tachycardia syndrome)- I think it is very likely.  With P.O.T.S., the heart rate goes up 30+ beats per minute with standing.  

An electrophysiologist would likely want to run a tilt table test, but if you can prove it so dramatically, as you are describing, without going through that test and the cardiologist is familiar with P.O.T.S. and will do orthostatic blood pressures on you there in the office (lie down on the exam table for about ten minutes before they take the numbers, stand for at least one minute before they again take your blood pressure and pulse, etc.), you might consider avoiding the tilt table test, as it's not a pleasant one for a lot of people.  

The other criteria for a P.O.T.S. diagnosis
(besides the heart rate going up with standing 30+ beats per minute in absence of an underlying explanation like severe anemia, dehydration, or a panic attack when a person stands up; and I think they may look at length of time this has been happening also)  
is a standing norepinephrine level- I believe it has to be over 600 ng/mL.  (I never was tested for when diagnosed via tilt table test.)
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Avatar_f_tn
Thank you both so much for your feedback. The more I read the more it seems I'm on the right track with looking into dysautonomia. At this point I'm just impatiently waiting to see this cardiologist on Tuesday and you have given me some great questions to ask.
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875426_tn?1325532016
You're welcome!  Let me know how your appointment comes out?
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