Tilt Table Question

[juliegee]

Hi All,

I'd love to hear your experiences. I've never done a formal TTT, just the Poor Man's version at home and in the ER. Each time, I lose the pulse in my wrist after a moment or two of standing. The finger clip at the hospital simply stops registering. Is this common? My hands and feet turn really dark purple and get so cold at the end of 10mins. Does this happen to you, too? My HR goes up anywhere from 30-60BPM depending on whether or not it's a good/bad day. I'm up to .1 florief and it does seem to help stabilize my HR a bit.

I'm just curious about the lack of pulse on my wrist and the purple extremities. Is this common with POTS?

Thanks-

Julie

[Rachel]

Julie,

Yes, my extremities turn purple (because of blood pooling). This is common with POTS. And I've had the pulseox (the finger clip) stop registering too. My nurse wasn't sure what to think! I was her first POTS case and so she was learning a lot! I think the pulseox stops registering because the blood just stops flowing well and so it can no longer detect the pulse.

I'm glad that the florinef seems to be helping you. Hope your doctor can continue to find some good treatments for you.

Rachel

[deucykub]

Hi, Julie:

Absolutely, yes! My doctor's notes stated that the pulse in my feet was barely palpable, and I had a Pulmonary Function Test with the statement "patient tends to lose signal" of the pulse-ox. My feet and legs turn the most lovely shade of purple whenever I'm upright, and my hands turn purple at times. When my hands turn purple, I am typically feeling really sick.

This was the link that really hit home when I was researching the color changes in my hands and legs, which according to my doctors is due to blood pooling in the extremeties: http://www.ipej.org/0602/raj.htm (figure 2 will probably look very familiar).

Have you talked to your doctor about getting a TTT? Have you been diagnosed with POTS?

I hope you are feeling much better soon!

(Edited out last question... don't want to hijack this thread. )

[cardiactec]

i didnt lose pulse in my finger with the pulse ox, but my legs turned a muttled purplish spotty red color after about 6 minutes and they were also, like yours, ice cold to the touch. my pulse jumped 100 points from supine to standing within one minute of being upright.

glad florinef works to keep your rates controlled. i'm on 200 mg's of beta blocker and 20mg's of mestinon and my rates are still high.

[lavender]

I've noticed the same thing. I've done a few Poor Man tests at home to show my doctors the numbers. I've noticed that my wrist pulse gets more and more faint while I stand. I use a digital BP monitor cuff. I've noticed that when my heart really starts going and my pulse gets faint that the monitor has a hard time getting a reading. It'll give me an error message 3 times out of 4, but works fine other times. my hands and feet and also legs get super purple durring this. As soon as I lay down my pulse is strong again and my hands and feet usually look more normal.

Deucykub, the two times I've done pulmonary tests my DLCO (gas exchange in the lungs)has been 66% and 68%. I havn't been diagnosed with POTS as of yet. But I've wondered if this is something that happens in POTS? Anyone else? Did they say why your DLCO was low? They followed mine up with a CT scan to see if there was inflammation or scaring causing it...there wasn't. My nail bed get purple at times, but not so much my lips. Like I said, I'm not sure that I have POTS at this point....so take what I say with a grain of salt! I do have big changes in my hearthate and BP when standing.....

[jesse1919]

"The finger clip at the hospital simply stops registering."

Yep - happened to me too when standing. It said "noise" and the nurse couldn't feel my wrist pulse either so she used a stethoscope on my chest to get a pulse.

[Tessa]

Had the same problem with the finger clip. They could not find my pulse. They tried all my fingers, my feet and finally put it on my right ear.

I was going to undergo an endoscopy and they needed to find my pulse...

I had it with sedation. I was supposed to be conscious during the endoscopy but I did not know on that time that I had POTS and I did not know that my allergic reaction to a local sedation some years ago, was a sign that something was going wrong when using sedation and/or aenesthesia...

I kept sleeping during the whole process and I did not awake until a couple of hours later.

It seems they were suprised about my reaction... Even worried, because they tried to awaken me, but no reaction... And they just left me there sleeping...

Can you imagine my husband waiting outside for a test that was said to be around 25 minutes and more than 1 hour later, I was still inside, without getting information?

It is also very difficult to get by blood pressure checked up. It seems they cannot hear it very well...

No idea what they mean with hearing. (Maybe the pulse)...

Love,

Tessa