Ttt Results - Does This Look Like Pots To You?

[HopefulLady]

Wow I am so tired I could sleep the rest of the day. But the good news is I finally have a diagnosis. I was officially diagnosed today with POTS and although I did not faint during the TTT my heart rate and blood pressure spikes were out of this world. They said I qualified to go vanderbilt for further testing. They are starting me on a beta blockers ASAP. I went 45 minutes didn't faint even after nitro was administered. Here are my results

Supine: HR 110 BP 162/87

Tilt 00:41 HR 144 BP 171/95

2:50 HR 145 BP 170/88

5:50 HR 139 BP 178/92

8:50 HR 136 BP 208/94

11:50 HR 127 BP 187/95

14:50 HR 129 BP 201/85

15:35 HR 132 BP 183/82

17:50 HR 135 BP 161/88

20:50 HR 138 BP 177/86

22:13 HR 135 BP 176/84 ( NITRO ADMIN) SUPINE

24:46 HR 137 BP 156/90

25:23 HR 151 BP 150/90 ( TILTED BACK UP)

26:14 HR 147 BP 168/85

28:34 HR 154 BP 156/87

31:02 HR 150 BP 133/77

32:50 HR 152 BP 154/74

36:43 HR 146 BP 157/79

38:50 HR 144 BP 154/79

40:58 HR 149 BP 159/67

42:46 HR 145 BP 179/71

44:53 HR 143 BP 148/86

47:06 HR 138 BP 145/78

SUPINE :

48:22 HR 129 BP 148/77

49: 48 HR 110 BP 156/88

STANDING 50:50 HR 149 BP 155/76

[Simmy]

It does look, to my untrained eye, like you're just above borderline for hyper-POTS, simply because your supine numbers were high to begin with, otherwise they'd be well above. Were you flat and relaxed for the FULL 15 minutes before they took your supine readings, or are your resting hr and bp always that high?

In any event, congratulations for moving a step closer. I know that's a relief. Rest up.

[lieze]

Wow do you really have to go through all of that to get an official diagnosis?

I can see why you are tired.

You are a real trooper. I'm sure that you are glad that is over with!

[HopefulLady]

It does look, to my untrained eye, like you're just above borderline for hyper-POTS, simply because your supine numbers were high to begin with, otherwise they'd be well above. Were you flat and relaxed for the FULL 15 minutes before they took your supine readings, or are your resting hr and bp always that high?

In any event, congratulations for moving a step closer. I know that's a relief. Rest up.

No Simmy normally when I am resting my HR is in the 60's 70's sometimes 80's ... BP is always all over the place it can be normal one minute and high the next

When I got there I walked to the back room and they strapped me up to the table and test began they did not let me relax flat for 15 minutes so 110 is just walking back laying down and then getting tilted right back up ... The thing is I never knew my bp got that high while I was on my feet. But I was calm throughout the whole test I just felt like my toes and feet were burning like pins and needles. And My head hurt after the nitro. But my heart was pounding they said it was all sinus tachycardia no arrythmia's were found.

[arizona girl]

Does to me, but you sure have a high systolic BP as well, including when you are supine. I think there is a variant where there is supine hypertension, but then you also had it standing, and your dystolic stayed mostly normal. Something you should probably ask about.

I have the tachy my baseline hr is lower so I don't get as high as you. Also both my systolic/dystolic go up on standing. When I'm supine I'm almost always normal, sometimes I will get a bit brachy and hypo after sleeping.

Just thought you might like to see that there can be differences and still have a positive test. I'm glad you didn't faint that means you don't have syncope, yea! It took a while but I did faint and it was similar to the presyncopes I have in real life. So I have a few things going on and it looks like mine is caused by small fiber neuropathy. If you can figure out cause that will be helpful too!

With less going on hopefully you will be able to treat this easier. Happy that you know something, it is a relief isn't it? Positive tilt will now open doors for you for further testing, hope that process goes well and quickly!

[HopefulLady]

This is what's so weird 3 weeks ago for my regular visit my blood pressure was 126/70 ... I mean my blood pressure just jumps all over the place. Maybe I should monitor it at home too? I just feel so nauseated right now. My blood pressure has never been over 160/100 at least not caught in the doctors office. I assume being on a beta blocker is going to bring it down.

[HopefulLady]

I just took my pulse using my heart rate monitor I am at home resting laying down its now @ 84 ....

[arizona girl]

Oh, I did forget to mention I too felt awful during the test a lot of pain and for weeks afterward, may be was worse because of the faint. I didn't where shoes, just socks, so I hear you on the feet.

I think it is a good idea to have your own BP cuff at home, then you can track it yourself. My doc at UCLA told me to do just that. Supine, sitting, standing and extended standing. I was shocked when I saw what was happening and had no idea what a swinger I was. Yes, you can be all over the place, I'm not surprised that is what is happening with you.

In most docs offices they take your bp sitting down, so it can look normal. I wish all doctors were trained to check bp/hr in all postures. I think more people would get diagnosed faster if they did.

I just bought a great cuff at costco, if you have one near you. It was less then $40 and has the built in tracking software so you can down load to your computer and print out reports. It is the microlife deluxe automatic blood pressure monitor. Model number on the bottom of the box is: #BP3NA1-1X. You can probably get it online too. It is working great for me. It allows two people to use it, so I use 1 for supine and 2 for standing.

Also I always check my bp supine when I wake up before moving. That gives me a baseline for the day, it also revealed the waking hypotension and brady that I didn't know I had.

The most helpful tests that I had done in this process was the tilt, supine/standing catecholamines and the skin biopsy for small fiber. I don't know if vanderbilt does the skin biopsy but they do, do the other Qsart and sweat tests that can show neuropathy too. I found it really helpful to read all the mechanism and causes on the main dinet page, it helped me narrow down and rule out which conditions were closer to mine. Maybe you will see yourself in one of the causes. Hope this helps.

[HopefulLady]

Thanks Arizona girl for all the info and tips !! I have a costco near me I will be going to pick one up !!! BTW arizona I had the catchecolmines checked in a 24 urine along with epinephrine, nor epinephrine and dopamine all were normal ... And blood work done full endocrine workup all normal.

[arizona girl]

24 hour urine won't catch what they need to know, it usually is to rule out a pheo. Dr. Grubb in toledo, who I was lucky enough to see, ordered the plasma test supine and standing. He is looking to see if you have supine elevations and how much they go up on standing. My norepinephrine almost tripled on standing. If you are pooling the body causes it to surge to constrict your vessels so can get oxygen to your brain. You do have to properly prep for the test a least a few weeks prior to having it done. If you go to vanderbilt they may do it there.

Thanks Arizona girl for all the info and tips !! I have a costco near me I will be going to pick one up !!! BTW arizona I had the catchecolmines checked in a 24 urine along with epinephrine, nor epinephrine and dopamine all were normal ... And blood work done full endocrine workup all normal.

[Simmy]

I second Arizona's suggestion of getting your own bp monitor, and to check it in all postures.

I'm glad your hr is back to near normal. It is important to document the fact that you were raised immediately after lying down and getting hooked up instead of waiting the standard 15 minutes, because that absolutely skewed your results. Based on a resting heartrate of 80bpm, you were not "just above borderline", but in fact your hr probably would have exceeded a 50 or 60bpm jump from supine to upright.

The same thing happened to me on my first TTT and it was deemed negative, until I later found another doctor who knew what he was doing.

[HopefulLady]

Thank You so much Simmy and Arizona you guys have no idea how much this means to me to have some support through this whole ordeal. I am so sick right now I feel like I am going to throw up I don't know if it's from that nitro but my head hurts and I feel nauseated. I will be getting a BP monitor though to check it here at home. I have a follow up with Dr. Deering to start a beta blocker next week as he was not in the office today. But it looks like they are going to send me off to vandi for further testing.

[HopefulLady]

Also the nurse doing the TTT said that she noticed that any slight movement would send my heart rate soaring. She said she has never seen anything like it. I don't have to move much for my heart rate to jump.

[arizona girl]

You might be hypotensive. I'd just lay down for a while and see if you feel better. The test alone without the nitro is enough to make you ill. The test is so helpful, but it does make you feel like poh dunk!!

Being horizontal is where I felt best after it. Your welcome, we have all been where you are and everyone here is glad to help! Now go lay down!!!!

[HopefulLady]

I am Thank You guys again You guys are so awsome!!! xoxoxoxoxo