LindsayA little over seven years ago I was diagnosed with postural orthostatic tachycardia syndrome (POTS) via tilt table test. Yesterday I had my second tilt table test.
The bad news: I still have POTS. The good news: a lot has changed in seven years.
I am participating in a research study testing the effects of ivabradine on POTS, and part of the participation criteria includes confirming the POTS diagnosis via tilt table test. So, yesterday we confirmed that I still have POTS, and thus am enrolled in the study.
The Test
The tilt table test is a noninvasive test used to determine the cause of fainting or feeling lightheaded or dizzy when standing. The patient is told to stop certain me
dications anywhere from 48 hours to 1 week prior to the test. These medications may include midodrine, florinef, and beta blockers, although I was told I could continue my beta blocker. The patient will also be instructed to abstain from drinking or eating anything for a period of time prior to the test. I was told to fast for 12 hours, which if you know how I like to eat and how much water I drink, you’ll know was torture. As it technically isn’t a food or drink, I chewed gum all morning to keep my mouth from drying out.
On the morning of the test, the patient changes into a stylish patient gown (the bra comes off, ladies, so you can just let the girls swing free that morning). A line is inserted into a vein to draw blood or provide IV medications or fluids. Some patients may have leads placed for EKG readings throughout the test.
The patient then lies on a special table and is strapped down. A blood pressure cuff and pulse oximeter are placed for continuous BP and heart rate monitoring throughout the test. A baseline heart rate and blood pressure reading are taken.
The special table has the ability to rotate to a standing position. Once the doctor is ready to start the test, the table is tilted between 60-80 degrees. Because the patient is strapped to the table, s/he moves with the table to an upright position – nearly standing up straight but leaning back 10-30 degrees, depending on the angle of tilt. It’s like a very slow, very boring rollercoaster. The bottom of the table has a platform that the patient stands on when the table is tilted.
Then…you stand. That’s it. It’s a standing test. I know with a name like “tilt table test” it sounds like it’s going to be all exotic and sexy – something more than a table. Being tilted. For a test.
The tilt table test lasts anywhere from 20-40 minutes. Throughout, the patient’s heart rate and blood pressure are monitored continuously for any changes, and the doctor may periodically ask the patient how s/he feels. If the patient loses consciousness, the table will be tilted back to a horizontal position, ending the test. Some doctors will tilt the table back to horizontal if the patient starts to feel faint without actually losing consciousness, and others will wait for the patient to lose consciousness.
If the patient’s heart rate isn’t responding, some doctors still follow the barbaric method of administering a small nitroglycerin dose to see how the patient’s heart reacts, which is usually like it’s on crack after a quadruple shot of espresso. Most doctors have abandoned this practice as it isn’t helpful in diagnosing POTS, but it’s important to ask the doctor whether nitroglycerin will be administered so the patient is prepared. At the end of the test, the patient is tilted back to the horizontal position and allowed to rest. Saline IV may be given to help improve symptoms.
If the patient experienced a significant drop in blood pressure during the test, a diagnosis of orthostatic hypotension or neurally mediated hypotension may be given. If within 10 minutes of being tilted the patient’s heart rate increased by at least 30 beats per minute (bpm), or if the patient’s heart rate reached 120bpm or above, s/he will be diagnosed with POTS.
What to Expect
I’m certainly no expert on all things “tilt table”, but as I have now had more tilt table tests than the average person, I feel I’m allowed to share my personal experience:
It sucks.
That pretty much sums it up. If you have POTS, at best the test is extremely uncomfortable. At worst it’s rather painful. Blood pools to your legs, which may turn a bright red or purple blotchy color, and may start to feel heavy and ache. You’ll likely be lightheaded, dizzy, and you might feel the adrenaline dumps. One thing is for certain, if you have POTS, your heart will race.
For my first test, I wasn’t on any medication. My baseline heart rate started at 65, once tilted I maxed out at 140 and stayed consistently around 130. I was extremely dizzy and lightheaded. My test only lasted 10 minutes because I was beginning to lose consciousness and the diagnosis was obvious. I didn’t want to faint, and tried hard not to, although I almost did. The staff allowed me to rest for 30 minutes afterward, and I could barely walk once I stood up to leave. The rest of the day and night I felt exhausted and weak, but no pain.
For my second test, I was on the beta blocker but hadn’t taken it in about 40 hours. My baseline heart rate started at 68, once tilted I maxed out at 115 but my heart rate was all over the place for the duration of the test. It didn’t feel like my heart was beating fast, but I had a lot of palpitations. I was dizzy and lightheaded, but just my regular everyday symptoms. The test lasted for the entire 30 minutes. I desperately wanted to faint (the only times I ever faint is on the street or in stores surrounded by strangers – I want to faint while hooked up to machines so we can see what happens), but didn’t, and didn’t really feel like I was too close to fainting. I had a lot of leg pain during the test, but was able to get up and walk fine after resting for 10 minutes once the test concluded. I felt okay for most of the day but developed a massive headache last night and woke up with chest pain and a racing heart multiple time throughout the night.
But while the test is awful, the answers it provides are worth it.
Although I had worse after-effects with the second test, I feel the test itself went smoother than the first, and my symptoms weren’t as pronounced.That’s very promising.
In another seven years when, God forbid, I have my third tilt table test, maybe I’ll finally pass.
“My advice to other disabled people would be, concentrate on things your disability doesn’t prevent you doing well, and don’t regret the things it interferes with. Don’t be disabled in spirit, as well as physically.” – Stephen Hawking
Smell ya later.
– Linds
I’m sorry you had some pretty yuck side-effects with the headache later & chest pains in the night, but it is promising the test went a bit better this time. It was really interesting to learn more about this as I didn’t really have a clue what happens during a tilt test ( definitely not as “exotic and sexy” as some may think!) I love that Stephen Hawking quote too, it’s brilliant!
Caz xx
Thanks, Caz! Yes, I’m excited that this test went better than the previous. I don’t always realize it day to day, but over time my symptoms have improved. I remember how awful it was in the beginning, and I’m glad it isn’t like that anymore 🙂
I have had two with dramatically different results.
The first on was on medication and not fasting. My bp plummeted to 60/40 and I fainted violently within 6 minutes of tilt. As soon as I stood up to leave, I fainted again. This tilt was useless because the heart rate portion wasn’t working.
The second tilt was completed at Vanderbilt. They do only a 10 minute tilt based on POTS symptoms showing within 10 minutes of standing. I was off meds for 48 hours and not allowed to eat or drink for four hours. My bp was sky high and my heart rate went in the upper 120’s. Thankfully I was diagnosed with hyper POTS (hyper based on further testing.) I skipped out and didn’t feel any worse then a typical day.
The tilt isn’t the worst test when completed by a caring and competent tech. It is the means to an end; a diagnosis.
Thank you for sharing your experience! If you don’t mind me asking, what criteria did your doctor use for the hyper POTS diagnosis? I have had one doctor tell me I have it, and another said I didn’t, because they each use different criteria.
I had the tilt table test of course. We use the second done at Vanderbilt that was valid. I had INSANELY high bp during that test and during subsequent poor man’s tilts done (they perform one during every office visit and have you perform readings at home.) I also did a 48 hour urine catch that checked various levels in my urine (catecholamine.) Between the high bp that is normal upon sitting/rises upon standing and the results in my urine, they made the determination.
That’s so exciting you’re participating in a trial! Have you already begun, or have I missed a blog post on that… I hope it does go well. I remember you were trying to come off of some POTS meds last year, so that was good timing, yeah?
The TTT doesn’t sound like fun. I was diagnosed in the span of the few years when I couldn’t sit up or move my head without fainting so I never had to be strapped in. I can stand up now, but the prospect of the table test gives me the jitters. Did you become ill for days after from being upright for so long?
Thank you for being so detailed on the TTT. I will share your post if anyone has questions on the specifics of it.
I hope you’re having a good day!
Hugs!
Thanks! I haven’t actually posted about the trial yet because the TTT determined whether I would be accepted into the trial (and since I failed? (passed?) the test, I’m in). For a couple days after the test I felt awful, although after my first one 7 years ago, I felt awful for weeks. I still have more fatigue than usual and am waking up multiple times per night with tachycardia. But, I know how lucky I am to be able to participate in a research study, so it’s worth it.
That test sounds like it would send my anxiety through the roof. You have to go through so much when you live with chronic illness that most of us without it couldn’t possibly understand. Thanks for sharing part of your story!
Thanks for your comment! You’re so right about we all go through with chronic illnesses! I think for the average healthy person, the tilt table test would feel like standing in line at the bank. But for those of us with POTS, it’s awful!