Do talk to the doctor. And yes, a good TTT for autonomic dysfunction will look for more than simple diagnoses of NMH or POTS. Things like the balance between the parasympathetic nervous system and the sympathetic and whether each is doing "its job" or trying to compete with the other and overdriving itself. And other things.
In my case they were competing and both were working too hard. It is more the doctor ordering the test, than the test site. The doctor can ask for the elements of the test that he/she wants, and it is easy to incorporate other parts of autonomic testing into the TTT--no special equipment the a hospital wouldn't have stashed away somewhere. Like for instance a tape recorder, the stuff for a grip test and one to measure the force you can generate to blow air into a device.
The tape recorder is for this: I was asked to read a paragraph and it was recorded. Then they played it back to me while I tried to read the paragraph out loud again, but they started playing the recording first so it was out of phase with what I was trying to read. All the time they were measuring electrocardiogram, pulse and BP. This was a significant test.
I had my TTT today. It was ordered by a neurosurgeon and done in the hospital where the cardiologist has his office. In the morning had bunch of X-rays for cervical/spinal cord view to look at any hindrance to CSF flow and then two series of an MRI. So the TTT was additional testing to see real-life functioning. Neurosurgeon had also ordered a urodynamics test (later) to see how the brain is talking to bladder. I think they are talking OK, but much of what we become accustomed to and take as "normal" might show otherwise in a test, so am fine with that. Good baseline at the very least.
For the TTT, a RN did the hookups and then the doc came in and and conducted the test. In total, it took about 2 hours. I think it was the doc's intent, but we were in conversation for nearly the entire time. Although electrocardiogram, pulse and BP, were hooked up to the computer he also used his own cuff for BP. He explained it all exceedingly well, but I am still not 100% sure of what it indicated. On the first test he seemed a bit concerned as the hr jumped and the BP dropped.
But then, they also had an IV in, was given injection of med to get the hr up in different phases of the test. It was explained to me that the drug worked for about 4 minutes with each shot so they could control that as needed. I really did not even know when it was being administered, but they said they got the hr up to 175 bpm. My understanding of this was to check to see how the bp acts in concert with hr, but ultimately looking to see how the brain is talking to the heart.
Besides the autonomic aspects, the doc was also doing a heart test, and that was fine. I had mentioned a CT scan of abdomen had shown tiny speck of plaque in one of the heart vessels. He said that was totally normal and then recounted that during Vietnam War, when they started to ship dead soldier back and tests had been conducted, it was shown that these 18, 19, and 20 year old kids had the same and had started with the hardening of the arteries - and that was before McDonalds.
The cardiologist did say here was likely some inflammation in the spine/brain that was casing some of the symptoms. As we were talking about my history, he thought it could have easily been caused from previous tic bite and Rockey Mountain Spotted Fever I had several years back, but only one week doxy treatment, despite weeks of complaints (Lyme was shown negative, but test timing and method are both in question). He recommended I see a LLMD, which I was already looking into.
He did put a different spin on Lyme, just as a possibility. He thought that it may be the case it is killed off with initial doxy treatment. But now as you have "dead" tic infection in you, the body does not know it is dead but still sees its fragmented remains as protein parts that need to be attacked by the immune system.
This causes inflammation and over time this reaks havoc on many systems, including, spine/CSF/brain - which shows it s own dysfunction in cognition/memory/etc. - and, in turn reaks havoc with all other body systems (inflammation hits pituitary, which messes with thyroid, which messes with metabolism, which messes with liver, etc., all which mess with brain - not always in linear sense, as most of these functions are recursive in some way). Then, maybe have something that looks like CFS.
So, I was at least pleased with his assessment and feedback. Will get feedback from neurosurgeon, and hopefully can see an LLMD soon. On a final note, I felt more chipper and alert after the test, than when I started the test. He said that was likely from having my BP raised in some concert with the hr, noting to not limit salt intake as this would have similar positive effect ton BP.
