Ok. It was recommended that I see cardiologist (by endocrinologist – same practice) again due to dysautonomia. When I found out that appt was with PA (after having discussed and been advised by endocrinologist that it MUST be with doctor), I thought it best that I cancel appt. The nurse called me and encouraged me to attend, said that she would be around that day and would research dysautonomia. I followed her instruction.
PA (whom I do think is a good person) asks questions (approx 3 of them). All in the: “Is this a true statement” fashion. Were you asking about POTS was one of the questions, to which I answered yes. I had asked about POTS awhile ago but had since become far more convinced that I am incredibly dysautonomic. Again, I explained this ALL to the nurse (when I was in the market to WAIT for the DOCTOR and resched appt). She was even pulling things up online.
PA says that EKG is good (which is what I’ve always heard, well – I’ve done at least one other EKG and it was fine as far as I know). She says she’ll do a tilt table test. She explains that this consists of laying for 6 minutes (and that I should lay to get started), taking laying bp, sitting for 6 minutes, taking sitting bp, standing for 6 minutes, taking standing bp. THIS IS THE TILT TABLE TEST! PLEASE READ ON SINCE IT GETS SO MUCH BETTER – THEY MESSED UP ON THE ABOVEMENTIONED TEST!
Now, I must mention that I feel like CRAP! I’m too sick to even attend appt, frankly. I’ve felt shaky, chest pain, light sensitive, deaf in an ear temporarily, excessively thirsty, and I’m sure mucho more since yesterday.
Ok, here goes the test. A cute and nice 20 year old girl comes in and takes the lying bp, she instructs me to sit and times 6 min, takes bp, INSTRUCTS ME THAT I NEED TO SIT FOR 6 MORE MIN SO SHE CAN TAKE BP AGAIN WHEN I STAND. SHE HAD ME SIT FOR 12 MINUTES AND STAND FOR NONE! But she did take my bp as soon as I stood.
Then the PA comes in and explains to me about ‘fight or flight’ and how it’s a good thing. Asks me if I’m seeing anyone for anxiety. Tells me that my heart is WNL. I explain to her how the test was done and she says, “That’s ok” and tells me that the longer I sit, the better. When I explain that there was no period of standing, she says she’ll talk to the girl who did it. She proceeds to explain how normal it is for things to fluctuate and keeps ‘pulling the anxiety card’. I explain to her that she does not live in my skin. She keeps telling me what a good thing it is that my testing came back how it did.
I do wonder about why both ‘techs’ who were taking bp. The first one was when I got there and he had to change from my left to my right arm. The second girl, it happened upon standing, she had to ask me to remove jacket to get a read. Is there anything to this? I’ve had them not be able to get my temperature either and then give up on it. Ring a bell?
MY AFTERTHOUGHT IS THAT I SPECIFICALLY SPOKE TO THE NURSE AND WANTED TO FOCUS ON DYSAUTONOMIA! SHE TOLD ME TO COME IN! IF I NEED A NEUROLOGIST, WHY WASTE MY TIME?! I’M NOT A HYPOCHONDRIAC TRYING TO MAKE HEART APPOINTMENTS! The cardiologist says my heart is stable and my genetic doctor says that while it may be stable, it is still a concern.
Remember that the other day I had high BP, was taken twice to confirm just a minute or two apart. Yes, it was high. This is the first time this has ever happened to me that I know of. The funny thing is that: I could feel it in my chest while I sat there. I just couldn’t believe that somebody else was able to see something – anything! Then my friend tells me that I must be nervous. I mentioned it today and I was explained (as if an imbicile) that my heart can reach 180 and it’s ok. I tried to explain that it happens randomly and without exercise and was told that I am deconditioned. Holy s…!
Any thoughts, please! Sadly, I’m reduced to needing a support group for sanity!
Why did they even see me today at the cardiologist if I’m anxious and deconditioned? I can’t wait to get a copy of my chart and see how they don’t admit to the ‘botched’ harry homeowner , poor mans, tilt table test.
Imagine why I cannot articulate myself when all I get is someone standing in front of me (while I feel like dog craP) and ‘closing loopholes’ on me. They don’t even care if the answers/excuses they give me are consistent – as long as it ‘dams up’ what I’m trying to say/explain!!!!!
Oh, and I would assume that the hugely swollen left eye that I have all the time would have something to do with heart? When I ask about that which I can readily prove – all you have to do is look at my face – I can even see it in front of my own eye at times – they don’t know about that!
Do you know what would cause a left eye to be notably swollen around the orbital rim?
Of course, none of this is their concern because they only treat the heart and all of their tests are gold standard, I was told. Thoughts?