Graphs of Heart Rates During Tilt Table Tests

I wanted to share with all of you a graph of my vitals during my TTT's. I'm not sure how to get BP's to work, but if I do, then I'll post those alongside the HR's so you can see how that correlates (or does not correlate in my case...hehe).

Cleveland Clinic

UPMC Passavant

At the place where I have marked Nitro, they lowered me back down briefly and gave me half a sublingual nitro pill. I thought it was going to kill me. I will never ever let any doctor give me that drug again! Ugh!

The Trip to Cleveland Clinic

The drive there was a lot worse than I was anticipating. I don't remember the drive to Cleveland being such a problem, but it was awful. Our GPS told us to go over a closed a bridge, make lefts where we were not able to (divided highway) and was generally wrong most of the trip.

We got there and thought I was going to have a panic attack from all the stress of trying to find the entrance to the parking garage. Things were horribly signed and the one way roads and inability to turn around ANYWAY made it extremely stressful and frustrating. They really need to make the signs larger and closer to the road so drivers can see them ! I had to pop a 15mg HC stress dose because I felt like I was going to lose it in the parking garage. That snapped me out of it!

I got in there and the nurse rubbed me the wrong way. She was a weird one. I was asked very specific questions about my "first episode", but when I tried to explain my point further, I was rudely interrupted. I brought in all of the requested labs (holter reports, ECG's, echos etc) and they didn't even seem to care! I don't know why I was even told to bring them in the first place. When I was trying to explain to the nurse my history, I felt like I was being interrogated by an enemy soldier. She was second guessing me, telling me there's no way I could possibly be feeling that way. When I told her that my heart rates hit 160 on a regular basis, she had the nerve to say "Well you walked the whole way back to the exam room, got weighed and you seemed fine". I told her very sternly that my heart was racing the ENTIRE time. Once again she just did not believe me at all. I was getting pretty ticked off the longer the nurse was in the room. She down played every single thing I would say.

Once the doctor got into the room, the exact same thing happened. She told me that everything I brought in today would need scanned into their computer system. Nothing is done on paper. Ok...so why was I told to bring all of this in? I would have happily emailed it to whoever takes care of that stuff.

The 2nd round of interrogation began. I don't know who was worse, the nurse or the doctor. For some unknown reason they focused so much attention to my "first episode" and didn't want to hear much about anything else.

My first episode was during summer band camp in 2000. I told her that it was very hot outside and I immediately felt weak, heavy, lightheaded and overheated. She said, well if this happened as soon as you walked outside, then you were probably not dehydrated. I told her yeah that's what I thought too. She asked me if I sought medical treatment or went to the ER and I told her no. I just sucked it up and went about my marching. No one else was having these problems.

Learning the marching formations, bending down and holding my arms up to play was awful. She said that it seemed pretty unlikely that I could finish 2 weeks of marching and do all of this if my symptoms were as bad as I described. I told her not to underestimate determination...LOL I'm a pretty stubborn person.

Eventually we got to more recent history where it was first discovered in 2007 that I was having periods of tachycardia. I told her no one ever took me seriously, which is ironic because THEY WEREN'T TAKING ME SERIOUSLY! I told her I was diagnosed with adrenal insufficiency, b12 deficiency, alopecia areata. She didn't even care about the AI.

After the interrogation, she listened to my heart and told me that she'd like to do a tilt test. She explained how they do it at Cleveland Clinic which was much different than what I had seen online. They first take 3 minutes of control heart rates/BP's, then tilt you for 2 minutes at 30 degrees, then tilt you for 2 minutes at 45 degrees. After that they tilt you for up to 45 minutes at 70 degrees. I told her that I wanted to have my catecholamine levels tested with this test, so she added that on.

I went back and was strapped down. They first placed the IV in my arm and I had to rest for 30 minutes to get the supine catecholamine levels. I was glad to see that they did this right. After 30 minutes, they couldn't get any blood out of my vein since I was lying down! I have no idea what they ended up doing, but it worked. I just hope the levels weren't higher than normal because I was a little freaked out that they couldn't get blood...

They took 3 minutes of control HR's/BP's and then it began. If you've never had a tilt test done, it's an experience no one can possibly explain properly to give you the sense of how miserable it feels. As they started tilting me up, I could just feel my body go..OH NO! NOT AGAIN! haha

Immediately my HR's began to climb. Once they put me up the full way to 70 degrees, it was bad. First reading was 119 and that's the lowest HR I had during the entire test. I got all the way up to around 150 and stayed there for the entire test. The nice techs/nurses doing my TTT took down any comments or symptoms I was having during the test and it is interesting. At minute 6 I told her I was having butterflies in my stomach. At minute 14, I had that same feeling. Then at minute 15, I started to sweat and felt really hot. I had them pull the sheet down off of me. In that room, it was FREEZING beforehand so obviously my body was responding to something. Minute 16 I told the lady this is very typical of how I feel and my heart rates won't be going down until they lay me back down. Guess what? I was right! My HR's continued to stay steady until they laid me back down at minute 45.

Once they tilted me back down, they immediately went from 150 to 75. I had major heart palpitations, PVC's, couplets, PACs. It felt awful. It was awesome to see they were captured on the EKG!

During the tilt-test that rude nurse came in at some point (I can't remember exactly when, but my HR's were into the 150's) and she was like..WOW you were RIGHT! Oh my goodness!!! Your heart rates really do get that high!! That's incredible.... Uh. wow thanks! I'm glad that I could prove you wrong jerk face. Do you think I would be lying about it? Taking your pulse isn't exactly rocket science with a freaking heart rate watch!

After that test, everyone treated me completely different. The weird attitudes were gone. They knew that I was seriously messed up. Dr. J (another cardiologist in that department) came in and said you have severe dysautonomia or maybe I should just say very marked dysautonomia. I think he was afraid to say severe, but it came out any way haha. Then Dr. F said practically the same thing as he did but in nicer bedside manner.

Overall I am happy that my heart cooperated! lol

My one complaint about Cleveland Clinic is that they judged me by the way I looked and not by what I was telling them. I look pretty healthy, I think.
But inside, my body is screaming for help. I told them that I'm a pretty strong willed person and I'm here now (after 10 years) because I need to control symptoms. It's getting to be too much for me and it's affecting my every day life. Even the winter was bad this year (before beta blockers), so that tells me I'm just getting worse and worse. If I can't get a break from this even in colder temperatures, then it's getting very serious.

On Monday I have to call them to schedule a few more autonomic tests. I'm getting the QSART testing, valsalvar maneuver and heart mapping done. I'm not completely sure what is all entailed, but I know that it doesn't involve any dyes or radioactive injections. I told her I wanted to avoid those for now. She was very understanding.

I'm not happy that they were treating me like crap when I first got there, but I'm glad they came around when they actually saw what I was going through. I feel like I had to prove myself to them!

Here are the vitals taken during my TTT. You can see how crazy my HR's go despite my blood pressure keeping up until the very end of the test. I think a small dose of HC would have made my BP's come back up a bit toward the end. I was feeling pretty exhausted at the end and immediately took 5 when I got down off the table. I had been due for a dose in the MIDDLE OF MY TEST!!

Stage----BP-----HR
C-01----101/61 74
C-02----105/56 72
C-03----105/61 74
C-Mean-104/59 73
30-01---114/66 89
30-02---109/61 88
45-01---106/61 103
45-02---108/68 106
70-01---115/71 119
70-02---114/64 123
70-03---114/67 126
70-04---106/63 125
70-05---108/59 133
70-06---104/60 133
70-07----99/64 135
70-08---107/63 125
70-09---108/64 135
70-10---107/60 133
70-11---104/68 135
70-12---101/66 133
70-13---107/62 140
70-14---103/63 140
70-15---121/74 145
70-16---106/61 145
70-17---109/66 142
70-18---127/81 150
70-19---107/74 148
70-20---116/71 145
70-21---121/68 140
70-22---101/61 140
70-23---103/67 148
70-24---114/54 153
70-25---107/66 148
70-26---121/49 142
70-27---108/63 140
70-28---101/46 140
70-29----88/65 148
70-30----98/53 145
70-31---102/69 145
70-32----90/65 140
70-33----99/50 148
70-34---101/69 148
70-35---100/57 150
70-36---100/55 150
70-37---101/66 148
70-38----95/67 145
70-39----94/57 150
70-40----88/64 148
70-41----96/48 148
70-42----93/48 153
70-43----92/69 150
70-44---103/55 150
70-45----95/51 150
Rec-01--126/62 77 I was having major heart palps. PVC's with couplets
Rec-02--114/59 75 1' Marked sinus arrhythmia was noted
Rec-03--110/57 84 More palps
Rec-04--107/55 83
Rec-05--107/53 83

The Tilt-Table Test

Today I had my tilt-table test and it was quite an experience. I was a little nervous for it for several reasons. 1). I was hoping that my heart would "do it's thang" even though I was nervous. 2). I was afraid of going into an adrenal crisis during the test 3). I hate hospitals!

I got there. Got registered and had some blood taken. Just an electrolyte panel and a pregnancy test in case they wanted to use nitroglycerin during the tilt-table exam.

Then I got all hooked up with a saline IV and was strapped to a table that looked like a torture device. All of the nurses were REALLY friendly and none of them were crabby or complaining which was great. I HATE IT when nurses complain to me about other patients.

As soon as the nurse tilted me up, I was like...whoa holy moly! I immediately felt the blood rush from my head. They raised me up to 70 degrees and kept me there for about 20 minutes. I had to tell them exactly what I was feeling at every given moment. The first few minutes were terrible. I felt very lightheaded, dizzy, near faint, but then I normalized. That feeling went away (for the most part) yet my heart rate just kept climbing. I could not believe it! And all this time I thought my tachycardia was because of low blood pressure. There were a few moments where I'd feel faint again, but then I'd be okay.

I asked the nurse what my pulse was running (I could hear the beeps) and he said it was at about 134. Wow! That is simply me just being tilted up. Not walking around or anything.

The doctor came in and even he was pretty shocked with the response. Then he decided to lay me back down supine and give 1/2 a nitroglycerin tab under the tongue. They tilted me back up and all hell broke loose. I felt TERRIBLE. My vision started to get really fuzzy. I felt faint, dizzy, nauseous. They didn't keep me tilted for long and I was not complaining. My heart was beating so very fast and I just wanted to lay down.

During the middle of it, I told them I felt this extreme "terribleness". The nurse kind of laughed at that word I made up at the moment. When my heart starts to go this fast, I told them this is usually when I lay down and don't get up for a while. I wanted nothing more than to unstrap myself from that stupid table and lay down on the nearest bed. haha My heart hit 178 bp from the combination of nitroglyercin and simply being tilted up at a 70 degree angle.

This is what I have to deal with on a daily basis.

I have no answers right now, but it was interesting to see the vital signs during the test. I'll get a more official report later on. The nice nurse was kind enough to print me the vital signs, but said she wasn't allowed to give more than that. That's really all I care about to be honest. I guess it would be good to know if I had any PVC's or other abnormalities, but I didn't feel any.

These are the vital signs. I'll try to put this in an easy to read format for all of you. They took vitals every minute.

Start of Test (SUPINE)==> BP 112/65 HR 82
Tilting==> Each BP/HR represents 1 minute of tilting unless otherwise stated
BP 130/83 HR 85
BP 130/97 HR 112
BP -------- HR 117
BP 137/88 HR 117
BP -------- HR 120
BP 117/71 HR 121
BP -------- HR 116
BP 112/90 HR 119
BP -------- HR 120
BP 110/80 HR 124
BP -------- HR 125
BP 128/88 HR 126
BP -------- HR 133
BP -------- HR 133
BP 123/83 HR 133
BP 123/80 HR 133
BP -------- HR 136
BP 118/81 HR 134
BP -------- HR 134
BP 128/90 HR 147
BP -------- HR 143
BP 129/80 HR 142
BP -------- HR 137
Started tilting back down for the Nitroglycerin==>
BP 128/76 HR 113
BP -------- HR 109
Tilting Back Up With Nitroglycerin==>
BP 124/65 HR 145
BP 97/55 HR 164
BP 108/70 HR 169
BP 99/49 HR 175
BP 95/58 HR 175
BP 140/80 HR 173
Starting Tilting me back down===>
BP 140/77 HR 137
BP -------- HR 113
Test Complete. PHEW

Apparently Nothing is Wrong with me

Holter Monitor came back "Normal".

Here's the full report

1. Total recording was for 23 hours 59 minute with approximately 9 minutes of deletion due to artifact. The underlying rhythm was normal sinus rhythm. PR interval was 0.14, QRS 0.06, QT Interval normal. Lower heart rate was 55, upper heart rate was 159 BPM. Normal AV conduction.
2. Rare ventricular ectopy, totally 20, All Single.
3. Rare supraventricular ectopy, totally 74, 47 were Isolated, 18 paired. There were short runs of sinus arrythmia, but no significant tachyarrythmias were present.
4. The patient had no significant ST depression or elevation.
5. The patient completed a diary and had rapid heart rate and rapid breathing at approximately 1 PM. This was associated with sinus/sinus tachycardia.

Impression:
Overall, Holter Monitor is benign showing normal sinus rhythm with multiple episodes of rapid atrial rhythm, which were associated normal sinus rhythm and sinus tachycardia. No inappropriate supraventricular tachycardia was seen.

Now the sick thing was that this was a GOOD DAY for me. 160 heart rate is about normal for me if I do normal daily activities yet it looks like during these "episodes" the heart is beating fine. I guess that's good, but I feel like shit. So now what?

I go in for a the Tilt Table Test on October 13. I've had this BULLSHIT for 7 years, so what's another 3 weeks?

In other news, my husband was in the hospital for 3 days with guess what? TACHYCARDIA! After all these tests, they have no idea. What a surprise. No one knows what causes mine either. In the past few weeks I've had a lot of weird things happen to me. I'm not exactly sure how to explain it, but I feel like a different person emotionally and spiritually. When my husband was admitted to the hospital after having an adrenal crisis, it really shook me up. I had to take control of everything and drive myself around. I haven't done that for years and I realized that I can still do all of that if I put my mind to it. I realized that I can be as independent as I want to be, but I just have to give myself a chance to do it. I dunno. I can't even explain what I feel, but whatever it was it was for the better. My anxiety is gone...completely.