A post about the Ordinary experience will soon follow but Solar Urticaria is not letting me be great!
In Part 1 I left off with finally meeting a doctor that knew about my symptoms and treated people like me. What was even better was that he did Autonomic Testing to truly make sure if I had POTS or something else. I was told that the testing would take about two hours and I was excited but a bit nervous because I wasn't sure what to expect. My daughter came with me to the appointment for the testing. She couldn't watch at all but came for moral support.
I was on a table and I had wires to measure my heart rate and breathing. I also had a blood pressure cuff too. I really don't remember the order because brain fog is an issue but he did a breathing exercise. I had to hold my breath at times and breath slowly and he measured the results. I can tell you that the simple exercise had me seeing stars! Like literal stars buzzing around. I was thankful that I was laying down. I think there was another one that simulated blowing a balloon and I saw stars again. Each time I told my doctor of the side effects he was excited so I guess that was good....
This part made me very wary. The doctor got a bag of ice and put it on my forehead. Why you ask? It was supposed to measure my vasovagal response. I have NO idea how he measured it but it registered on his equipment. I hate cold and with my Fibromyalgia it made everything worse. After that I did a tilt table test. I had one before but this one was different because he stood the table straight up as if I was really standing. Most tests tilt you about 45 degrees or so and that is unrealistic. My doctor said that he disagreed with those because he said how many people do you see standing at 45 degrees? Um...not many??
This test was scary because the others already started triggering my symptoms and now I was vulnerable. That day is when I realized that I had a defense mechanism against fainting. I would think on other things, I would focus on one spot and will myself to stay awake and I would squeeze my leg muscles. Now I knew that I was taking a test to measure these things but fainting is scary. I don't always black right away. I have this slow draining of my life force like a death eater is attacking me. I am awake while my body shuts down and it all fades to black and I hate that. So I desperately try to avoid it. So I am Frankenstein's Monster strapped to the table trying not to loose consciousness. Then it occurred to me, if you avoid it ding bat you will not get a true test result. So I decided to let go. I immediately started to get irritable, sweaty and weak. The light started to fade away and my head dropped. The doctor pushed a button and then the table went back. He, still excited, said that my blood pressure plummeted from 120/75 to 90 or 88/60. I was about to go OUT. The testing sought to exacerbate my symptoms and it succeeded and then it was the wait for the follow up. I was happy that my body was able to "perform" and show a result for the record.
The follow up day is a distant memory but I remember that he confirmed that I did not have POTS but Postural Othrostatic Hypotension because there is a drop in my blood pressure when I stand and it gets worse when I am symptomatic. I also was told that I had Neurocardiogenic Syncope or Neurally Mediated Syncope or Vasovagal Syncope..insert confused Scooby Doo face. I was confused and happy because I was FINALLY diagnosed! My doctor was still smiling because of the discovery and has remained supportive.
I had answers and support and I was validated. I think that is the right word. Those doctors who tried to label me as depressed were officially, on paper, DISMISSED. Oh, I have a post on those doctors too because the experience of people with Invisible Illness is horrible is despicable. I even had to fire my Primary. Long story. Due to my wonderful doctor's support I was able to keep an eye out for my symptoms and learn how to aid myself when an episode comes along. He has drastically improved the quality of my life. I used to go down for months at a time and now it is a day or two and at most a week.
Do not short change yourself on getting diagnosed because it will help you plan your life on a day to day basis and it will give you piece of mind. So far there is no cure and I haven't had meds that can help. I currently have a Medtronic Heart Monitor to record my heart rate. Worst case scenario is a pacemaker and I don't know if I need that yet. However, I understand. Do not discard proper research because it helps. Also, a proper diagnosis on the books can help if you need to apply for federal disability. Your medical history will be important if it ever comes to that.
*I add links to these illnesses and medical terms for your basic understanding. There are scholarly articles and items with more detail out there for your use, if you feel so inclined. Keep searching.
One day at a time.