After so many years of being sick and knowing that something was very wrong with me, I finally found a doctor that did not dismiss me out of hand. Actually I can thank my GP for referring me to a Neurologist that had no idea of what to do with me but he knew one that would. He told me that this doctor just lived and breathed dysautonomia, so even though it was a 2.5 hour drive to see him I agreed. Fortunately my parents live close to him so I stayed with them for a few days and they took me to my appointments with him. The first appointment was just a consultation and he told me that I had some form of Dysautonomia and did a poor man’s tilt test. I was really symptomatic that day and was not surprised at his response but he went further to say that he believed that I had nerve damage that was causing it. Wow, to be believed and spoken to like a person with some intelligence was so refreshing for a change. He did a bunch of blood work and made an appointment for me to come back for autonomic testing. I really should have asked more questions but I was just so happy to have the testing done I didn’t. OOps, that was not good. I like to know all about what is going to happen to me and I had read about tilt testing and although it sounded unpleasant I was not prepared. So a month or so after my initial consultation I went back for the autonomic testing which included the tilt table and bunch of other tests that measured sweating and nerve reaction and I had a skin biopsy to test for nerve damage. I was in excruciating pain that day from heel spurs that were inflamed and even while lying on the table for the test my feet were in a position that was sooo painful that my heart rate started off high anyway just from the pain. But OMG, when you are tilted upright it is pretty fast and the whole room went dark and I started to shake and sweat, got nauseous and my heart rate skyrocketed and so did my blood pressure. I felt like I was going to die or faint or both and the pain in my heels was excruciating and you are not allowed to move while the test is going on so I just had to stand on those heels! I was only standing for 10 minutes but in real life I would have sat down or even layed on the floor when I felt like that! I always have control of my position at least to some degree but during the test I had none. I am lucking in that I don’t pass out but that might be because I get a lot of notice and symptoms. If the test had lasted the 50-60 minutes that some do my blood pressure would have dropped and I might have passed out then but that usually doesn’t happen to me until I am upright for quite a while. During the test there are wires etc measuring things like blood circulating to your brain and sweating and there are also breathing tests done while laying on the table. After this is all done I was so wrecked! And then I had to go to another building for a brain MRI while was also horrible because it took an hour of not being able to move my feet and I had to leave Ralph in the waiting room with my parents partly because I know the test was going to take a log time and that he would be concerned about me because I was in so much pain and also Ralph has some metal inside him and I didn’t think it would be safe for him to be in the room with me. Of course when I came out to the waiting room Ralph was surrounded by all the people who of course were petting him and he was in heaven. Thanks Dad! It took quite a while to get the poor dog back into working mode . Please remember that SERVICE DOGS need to be concentrating on their partners and not partying! I really needed his help at that point so it was very irritating to have to deal with that. He is older now and it is easier to get him back on track but its still unfair to both of us. Believe me he gets lots of visiting and love and play,just not while he is working.
All in all I hope I never have to have another Tilt Table Test. It was horrible but at least now I have proof of what happens to me when I am upright. And the EKG proved the Inappropriate Sinus Tachycardia which causes the tachycardia when reclining. Fortunately I take meds that keeps the tachy down a good part of the time (even if it slows it down too much sometimes) and I also take meds (Mestinon) which helps me to be upright longer but it doesn’t help as much as I had hoped.