NEGATIVE TILT TABLE TEST: BEING OKAY WITH NOT HAVING ANSWERS
I recently had a tilt-table test that, despite instances of presyncope and high heart rate, was negative. I am learning to be okay with living with an undiagnosed chronic illness.
Today, we are exploring that means of having persistent health issues, yet, not having an answer.
What is a tilt-table test?
A tilt table test is used to evaluate the cause of unexplained fainting. It is most frequently performed to diagnose postural orthostatic tachycardia syndrome (POTS). POTS involves orthostatic intolerance, which is essentially fainting or feeling a wide array of symptoms when you stand up. Some symptoms include heart palpitations, instability, lightheadedness, trouble breathing, chest pain, and dizziness to name a few. It can look different for everyone. It is also one of the disorders related to dysautonomia, which I frequently mention throughout this blog.
Why did I test for this?
If you are new to my blog, I am in remission from my autoimmune disease. Yet, I experience a variety of symptoms on the daily. Symptoms include dizziness, feeling faint, feeling dehydrated, heartburn, vertigo, and insomnia. I have had multiple instances where I experience debilitating vertigo, feeling as if I faint, when I’m driving or in public. The best thing is to eat or lay down. I tested negative for hyperglycemia. My doctor mentioned dysautonomia. This only felt like the right direction.
How did the test go?
7 minutes in I started feeling faint, sweating, heart rate up, just plain unwell. I took deep breaths during this and closed my eyes to imagine myself back to normal. I was literally out cold for the rest of the day. Took a nap as soon as I went home.
If you can’t tell by the title, I still had a negative tilt-table test. Why does this make me upset? Why does this make me frustrated? An undiagnosed chronic illness?
I am learning to be okay without having answers- without having a diagnosis.
There is so much frustration with not knowing what’s wrong. This kind of stems from black-and-white/all-or-nothing thinking. Like the idea that my autoimmune is no longer active… yet I still have all these symptoms. I know dysautonomia and hEDS have been mentioned, but I would’ve liked to see objective data on it.
I am building compassion by being okay with being pissed that I don’t have an answer. (lol). I give myself space to be upset with knowing something is wrong. I give myself space to feel insecure, questioning if I even have something wrong with me.
Getting out of black-and-white thinking
In functional/everyday scenarios, I know that I can’t stand up for long periods without movement. When walking, I know when I have to circle back and take a break. I know I have to eat small little meals throughout the day. I know that electrolyte water and eating healthy in general, make me feel better.
At the end of the day, I know something is not all okay. I am continuously learning how to accept that. What helps me at the end of the day is knowing I can take care of myself to the best abilities. I know that I can do what I can to comfort myself.
Another food for thought
Also, what did people way back yonder do? They did not wait for a diagnosis. They took care of their symptoms. POTS aside, with other types of dysautonomia and hEDS, there’s not much medication to use besides taking care of symptoms.
What I’ve taken from this test.
Every test that came out negative/inconclusive/positive has taught me something different. When I had my endoscopy/colonoscopy, we found gastritis and irritation in my esophagus that shows something funky is going on. Although we didn’t find anything in my colon, that gave me peace of mind that I did not have some other illness.
When I had this negative tilt-table test, I learned what it was like to feel my heart rate go up and what it felt like in my body. What it is like for my blood pressure to be higher than my norm in a setting where I feel faint. Psychonomic or not, I felt how that physiology shifted in my body. I learned that deep breathing and closing my eyes helped me reorient my body from whatever was occurring.
