Kaiser Sunset and the TILT Table Test

Yesterday was my big trip out to Los Angeles to go to Kaiser Sunset to have the TILT Table test done. We didn't know what to expect, but we were hoping that it would provide some answers as to why I get "blackout vision" when I stand up and feel as though I'm going to pass out quite frequently. My check-in time was 12:45pm, but LA traffic being what it is--horrible and unpredictable--we left the house at 10am, just to be safe.

I was given instructions beforehand not to eat after midnight; no water, no food, no gum chewing, no medicine, NOTHING. So, given the fact that I struggle with eating and water intake anyway due to my Gastroparesis, it was no wonder that my veins were a hot mess when they wanted to start an IV, oh...some twelve hours after I had consumed anything! The nurse kept saying, "do you exercise? Do you drink water?" and slapping my arm. In the end, she found one and I was on the road to getting hooked up to a bunch of wires. 

The doctor came in and asked me questions about myself: what I've been experiencing, what my health is like, what I do for work, if my sibling(s) are healthy, etc. She then explained that they would be looking for a POTS (I'll explain later) response or a more vaso vagal response (the most common type of fainting) and be able to let me know. She then explained what the test would be like:: Phase One- strapped onto the table, I would be tilted up to a standing position and observed. Once symptoms occur, te test would end. Phase Two- I would either take a nitroglycerin tablet or be injected with adrenaline to elicite a response as I'm tilted back up to a standing position. 

Fun. 

Strapped onto the table, with monitors beeping, away we went. It made me dizzy instantly. And then I just stood there...and I got whoozier...and my vision got dimmer...and they're asking you how you're feeling and you're trying to mentally check everything...it's overwhelming...for twenty minutes. And then it was done. And they laid me back down and started the adrenaline infusion. When it began to go into my veins they brought me back up and...

Oh. My. Gosh!

My heart pounded SO fast! I felt so faint and actually started to pass out! The left side of my face felt like it was drooping and my body was tingling. Not fun! I heard the nurse and doctor talking and said they had the infusion going for nine minutes, so they stopped it and let what was inside me run its course. It felt as though my heart pounded forever!! 

When it was all over, the doctor came and spoke to me and my mom. She explained that the testing showed that I do have a mild form of Postural Orthostatic Tachycardia Syndrome (POTS), which I had suspected. She said my heart rate, resting, was 70 and had jumped up to 90 or slightly above. And that my blood pressure, which in a severe POTS patient would REALLY plummet, only dropped about 10-20. At one point I saw my blood pressure during the test and it said 115/53. Before the test even started it was 94/53...I'm a mess.

The suggestion I was given was to avoid caffeine (coffee/tea/etc) and drink more water. I need to avoid standing and sitting for long periods of time and if I have to stand for a long time, to "pump my legs"--like March in place--to pump up my blood. It's nice to have some answers and to know that it's not severe--which I didn't even think it was. Honestly, just having a NAME to it makes so much of a difference!

So, You've Been To See A Lot Of Doctors

Friday (November 14) I had a couple of doctor's appointments, one of which was to be seen by a cardiologist for the first time. When you've been feeling dizzy, faint, having fluctuating blood pressure, a racing heart, and chest pain you kind of want to get it checked out. Naturally, they checked my vitals and weight like and good doctor's office would. My vitals, while sitting, was 94/58 with a heart rate of 70. Now, these are considered normal vitals, but on the lower end. I do not run marathons here, people! I can barely do palates in my living room!

Anyway, it was off to sit in a room...

When the doctor came in, her opening line was, "So, you've been seeing a lot of doctors."  Instantly that put me, as the patient, on the defensive. It is not my fault that my general practitioner passed me to my neurologist who then passed me to my ENT who then passed me BACK to my general practioner who then passed me to the cardiologist. If I had a magic wand, machine, or potion that could show them what was going on, I would us it, but those such things do not exist, so I get to play the game of Doctor Roullete and hope for the best!

After giving her a quick run down of my history, about how I suddenly got sick out of the blue in 2010...blahblahblah...then told her about how my blood pressure an go from something like 94/58 at one appointment to 120/65 at the next within 20 minutes (all within "normal" range, but there's a fluctuation)...how when I stand up sometimes I feel like I'm going to faint...how I have "blackout vision" accompanying these near fainting spells...how I have had episodes of a racing heartbeat...how I'm ALWAYS a cold. 

Her attitude and demeanor changed...

Right there in the office I was given an Ecocadiogram (EKG), hooked up from stem to stern with wires as they monitored my heart:: it was normal. She ordered me to wear a heart monitor for two weeks starting the day before Thanksgiving (Happy Thanksgiving To Me!) in the hopes of catching one of these episodes (which she should) on the cardiac monitor. She also referred me to go to Kaiser Sunset to have the tilt table test done to see how my body responds to the change in position (that should be interesting!)

She asked if I had any questions or concerns and I told her that I feel like doctors think I'm a hypochondriac and that I've voiced that concern a number of times. She said that I've got legit things going on, so not to worry. I inquired about the possibility of this craziness being Postural Orthostatic Tachycardia Syndrome (POTS) and she said that it's quite possible considering what I was describing. I have gastroparesis, peripheral neuropathy, and migraines which points to possible dysautonomia/POTS. So, after the testing, we'll see what the outcome is. 

It's just interesting to me that, coming into the appointment the doctor might have assumed I was doctor hopping or something. Using words like "so, you've been seeing a lot of doctors" doesn't really make a patient feel like you're going to believe what they have to say. I think, however, that after she listened to me, saw my history, saw my blood pressure for the day, felt how cold I am, and heard my family history (BAD heart problems) her perspective was changed.

Doctors need to be mindful of their word choices regardless of who they're dealing with. In this case it was someone with chronic illnesses. But words can hurt. Even something as simple as "So, you e been to see a lot of doctors."