Negative Tilt Table Test

[joyagh]

I have had symptoms since I was 4 months pregnant, about 3 years ago. I've been screened and cleared for COPD and cardiomyopathy & other heart disease, and have had a holter monitor. I have 2500 PVC's/PAC's per day.

I recently had "autonomic NS" testing done. They didn't have me do the stand up test. The tilt table test came back clear. I have done my own stand up test with my wrist heart monitor and usually have a 32+ BPM increase instantly. I have weird BP - sometimes high, sometimes low, sometimes low pulse pressure, sometimes high pulse pressure. I recently got an abdomial binder and have noticed amazing improvement when I'm wearing it. Is it possible I do have POTS even though the tilt table was negative?

My symptoms since my DD was born (emerg c-section after 78 hours of distressed labor) have been: extreme fatigue/sleepiness, increased HR (120+) doing any simple chore or activity, especially bending over and then standing back up; pounding pulse; constant palpitations; shortness of breath/feeling winded after the simplest of chores; dizzy; frazzled; scattered; spaced out; terrible memory; exercise intolerance; stressed; uncoordinated; leg muscle aches when lying down or overtired and muscles burning on exertion, etc...

When I was pregnant the same symptoms were extreme to the point where I was unable to walk, talk (chronic cough), breathe, sleep or eat. I also had pre-eclampsia & prenatal hypertension with about 50 lbs of extra water weight. I had a flu at 4 months pregnant and noticed the symptoms started right afterwards including blood pooling in my heels making it painful to be on my feet. (I am a dance teacher & massage therapist, so I was on my feet alot).

I'm going to the ND next week. My b/w is all perfect and they checked everything. I feel like my old self when I have the binder on, but symptomatic again when I take it off. Getting dressed exhausts me without the binder but I can walk up a hill while talking with it on. Is this an indicator I have blood pooling in my abdomen?

[AllAboutPeace]

Oh my goodness...reading your story definitely makes me want to give you a cyber (((hug))). You certainly have been through alot!! ...and you endure 2500 PVCs/PACs per day!

Your symptom list definitely sounds like POTS and the onset after the, by the sounds of it, traumatic birth of your DD is similar to the onset of others with POTS. It is not unusual for some people to experience times when they are less 'potsy' than others, so I would say it is possible to have it even if you have a negative TTT, especially if you are noting the 32 bpm's on your wrist monitor. I think it would be worth asking your doc to do the 'poor man's tilt' and let him/her know that you are getting the results that you are at home.

That's great that you are getting those kind of results from an abdominal binder...I'm thinking maybe I should get one.

[Libby]

Hi joyagh! It's definitely possible to have POTS but still have a negative tilt test. The primary purpose of the test is to diagnose vasovagal syncope. The negative/positive label only refers to whether standing triggered a faint (or pre-faint symptoms). I know that a lot of POTS patients do not faint during the test - statistically, I think most don't.

The test is indicative of POTS if your hr rises 30+ bpm or to above 120 bpm within the first 10 minutes of tilting.

[joyagh]

Thanks for the compassion!

Apparently I didn't get a BPM increase with the TTT, but often I do when I stand up on my own. but not always. I do feel uncomfortable standing. posturally. It's hard to explain. I can't breathe right and I feel physically uncomfortable. I get breathless, and frequently I do get a 30+ BPM increase. With the abdominal binder I feel 80-90% better.

I may never get an accurate DX, but at least with the binder and maybe BB's I'll get some relief.

[targs66]

hi Joyagh,

Apologies if you've addressed this (I'm so foggy today) - is it possible that you have another form of dysautonomia, like neurally mediated hypotension (NMH)? I also had a TTT and was told the results were normal, but then had a second one where during the course of the TTT they administered norepinephrine via IV.

I don't have the jump in heart rate that's indicative of POTS. During the first part of the TTT, I was pretty uncomfortable but didn't have any extreme symptoms. After they administered the norepinephrine and tilted me, my heart rate and BP completely plummeted. Apparently that indicates NMH, which (in my limited understanding) is just another kind of dysautonomia. It seems like there's a lot of symptoms that overlap with those of POTS, just not the tachycardia.

Best of luck and keep us posted.