u/InvestigatorHot6410

I had a tilt test done last week. The cardiologist said “normal” but now I am trying to get the “raw data” because I am tired of being labeled as “a young and healthy woman” (F in her 30’s) when the last 6 months of my life have been completely debilitated with these episodes.

I’ve made the costly decision to get additional opinions and seeing a new electrophysiologist / new cardiologist because even with increasing electrolytes/wearing compression socks and getting up slowly has not improved.

The past few months my medical bills from appointments, citymd/ER visits, imaging, procedures, labs and exams have put me over $2500 already.

I am currently on disability so the money is getting tighter day by day and the hope to return to work feels like it’s drifting and the paranoia of everyone saying “you probably won’t have a job to go back to” has made taking care of me so stressful.

Fast forward, today I called the hospital center to get the “raw report” from my tilt test and the receptionist basically berated me and said “What do you need? What is raw data? You have a copy of your report so does your doctor on your Mychart? You do have a mychart and know how to use it right? It should be there….why do you need all the raw data? Your doctor sees it and should be able to sit down and explain it to you in your appointment”

Which I then shared, as a patient I’m entitled to my data captured as well as the summarized findings report and I would like to have a copy of it which then she rudely said, “okay well you have your report. I have never heard of such a thing I will ask around to my staff and call you later.” I already know she will probably not call me back.

Feeling overwhelmed and not sure how others are navigating this and what your experiences have been in this process?

I feel like everything and the system is against me. Therapy helps but as time progresses it just feels like a bandaid.

Sincerely,

A weeping mom who wants to just be able to show up everyday and you know…play with her daughter without feeling like dying

Had a tilt table test done this week after experiencing lightheaded/dizziness symptoms with the last few months feeling like I’m on the verge of passing out.

During the test for 15 minutes I was laid flat — BP 110 mmHg, pulse in the 60s. I was then tilted to 70° for 30 minutes. During this part my pulse rose to 100 and BP was 125/70. I felt lightheaded and experienced tingling in both arms, fingers up to my wrists and forearms, and both feet up to my shins. I shared this with the nurses doctor but it didn’t make it to my report.

During the isoproterenol provocation phase they started me at 2 mcg/min. My HR rose to 130. They re-tilted me and what felt like forever but was only a couple minutes I experienced chest pounding, sweating, body cramping, waves of nausea, dizziness, feeling like I was going to pass out, and rigid fingers. I was drenched in sweat and started to panic when they said they would keep doing this for 15 more minutes /administer the medicine which will continue to amplify my symptoms to see if I passed out.

That’s when panic started to kick in and I asked them to stop.
Now I’m looking back from my experience and reviewing the report which says “no complications” and “normal response to upright tilt” and it feels completely contradicting to what I actually experienced. None of my symptoms during the test were documented and feeling distraught as this is impacting me and just want some answers and not be told that you are in need of compression socks, reducing caffeine and having more salt in my diet.

Has anyone had a similar experience where results came back normal but something was clearly going on? Any advice appreciated.