Wednesday I had my second round of Autonomic Nervous System Testing. As a quick recap, I recently became a patient of a renowned Autonomic expert who has taken great interest in my case. He referred me to redo the autonomic testing I had done a couple years ago so he could have updated data, which will lead to a more accurate diagnosis. This particular set of testing is actually the least favorite out of the incredible list of procedures I have preformed. It is not invasive, and it is not particularly painful but, it takes a massive toll on the body of someone with Dysautonomia. The test last around three hours and includes being strapped to a table the entire duration with multiple blood pressure cuffs down your arm, all the way to the tip of your finger. There are three distinct portions of the test:
- 1. The Quantitative Sudomotor Axon Reflex Test (Qsart), which evaluates the nerves that regulate your sweat glands in different areas of the body. This portion is actually slightly painful as the test feels much like you are being rubbed with stinging nettles down the entire left side of your body for 5 minutes straight.
- 2. Breathing Tests composed of Valsalva Maneuvers to measure how your heart rate and blood pressure respond to forceful exhaling. I am always bad at this portion since my diaphragm is so weak; while patients breathe out to typically get a small dial to reach 40mm, I was unable to get it to reach even 15mm... so we may not have enough data to accurately diagnose anything from this portion.
- 3. The Tilt Table Tests (or as Dysautonomia patients call it: The Torture Table Test) which monitors the blood pressure and heart rates response to change in positions. While strapped to the table you are lifted from lying flat, directly to standing. While this would not cause any issue for someone whose autonomic nervous system responds correctly, compensating for this positional change by constricting vessels and redirecting blood flow, a Dysautonomia patients response does not work leaving the brain void of blood and their heart racing uncontrollably. Typically patients with Dysautonomia become severely unstable during this procedure with a heart rate ranging anywhere from 150-200bpm, and lose consciousnesses almost immediately upon being positioned upright.
|The Torture Table in all its glory.|
You can see why I loath this test whole wholeheartedly. During my performance of the Tilt Table I blacked out, then attempted to compose myself with just enough time to not choke on my own vomit. It is truly a miserably three hours that I hope to never have to endure again... though that's what I said last time! Let's hope my doc has enough data for that to really be my last go! Results will arrive in December. As a comical side not, while preforming the test special electrode type stimulators are put on your feet. For some reason they just wouldn't stay on my so the tech had to re-adjust them multiple times. Finally in frustration she said, "Has anyone ever told you your feet feel very hard? Like extremely bony almost?" I tried not to laugh ;) Why yes, yes they have! Apparently these particular electrodes do not like hard Scleroderma feet! lol We ended up having to bring in another tech to hold the stimulator to my foot while the original tech ran the test. Oh the life of a Scleroderma patient!
Thursday morning I saw my Scleroderma Specialist form UCLA; I feel extremely lucky to be in his very competent care. He has made such a vast impact in my treatment plan, and hopefully the longevity of my life. During the appointment we went over some recent procedure results, did a physical exam, spoke about my upcoming Cytoxan Infusions, got some baseline labs drawn, and lastly made the decision to prescribe my fist sleeping medication. It has been months since I had a restful night; I have both trouble initiating and maintaining sleep, for this reason he prescribed Trazodone. This is commonly known as an antidepressant, but has been found in small doses to help insomnia greatly. Hopefully this drug will help get the permanent bags under my eyes to recede! lol I never really know the full outcome of his appointments until his visit summery arrives in the mail, which typical takes about a week. This particular physician does things a bit differently than my others, so I will have more to update about this appointment in upcoming blog posts.
That afternoon I headed off to my Primary Care Physician to get my Lupron and Prevnar vaccines. I must say, I was not expecting the Lupron to be as bad as it was! When the nurse pulled out the "kit" containing the administration device it honestly looked quite similar to a spinal tap! The needle is extremely long in length since it is an intramuscular shot, meaning the gel (yes it is more a gel than liquid! Ouch.) inside the syringe must reach deep muscle tissue, not just the top layer of fat like most injection. Unfortunately this particular vaccine also contains a TON of fluid, meaning the duration of injection time is long, long, long! And since it is more of a gel than liquidy it cramps the muscles horribly! Dang. That was one un-fun shot! I'll be sitting on one butt cheek for the next week! haha Thankfully I only have to get this done once a month! Next came the Prevnar (Pnemonia Vaccine) which was a walk in the park, just your typical shoulder shot. For some reason we were in the pediatric room so I got some pretty sweet pink band aids and a Batman sticker! haha ;)
Friday morning has rolled around and I am feeling pretty beat. My body feels as if someone had popped all my joints out of socket while I slept, and beat the rest of my with a bat. Urg. I am guessing my poor body is just overloaded with foreign substances after yesterday and is fighting back. Boy am I miserable today. Absolutely ever inch of me is wreathing in pain. I did have my weekly saline infusion this morning which seemed to take the edge off the lovely migraine I woke up with at least. Hopefully tomorrow will be a better day!
|A very exhausted Chanel.|