Since it was a clean room of sorts, so Thomas couldn't go back in with me. Just the tech nurse and head nurse/procedure specialist and me. The tech started to explain what needed to be done after another nurse asked me if I would participate in a blind clinical trial to further research on my rare disease. All of a sudden, my head started to spin. The room started to wave. I turned gray. The heat started to build in my head and neck and out and down I went. Luckily I was on the table.
As I came to I was so embarrassed. I felt so stupid. Really...we have only discussed the procedure and I go down. The head nurse walked in and decided to start with the biopsies laying down. We started talking and I was fine. Absolutely fine. No problem. As soon as she started to do the measurements, the lightheadedness and grayness came back. As I went into the attack and passed out again, the nurse explained what was happening and that indeed I have absolutely NO control over it. It is a damaged autonomic response uncontrollable by me. I asked multiple questions. But she continued to start on the biopsies. It stung but wasn't as horrible as I imagined. The ankle biospy stung more than the hip and thighs. However, when I went to sit up....boom. Back out. I was so embarrassed.
She decided to take my blood laying down. After 5 tries of getting needles into veins and the blood disappearing or clotting, I went out again. I had to sit up in the chair with rice heating pads on my arms. And ice packs on my head and neck. They finally got some blood and then it happened again. First the room, then the stomach and I turned gray. They caught me as I went down. Last thing I heard was something about the blood squirting and grab another tube. They helped me back on the table.
The nurse asked if the doctor realized how sick I truly was. If I had explained how bad the passing out and complete vasovagul response dysfunction. I said I had tried.
We then attempted the spinal tap. After the numbing agent was put in, I was headed back out. It was about 15 seconds after she pulled the needle out and about 30 seconds to a minute before the spinal tap needle went in. I was so lucky that passing out occurred during that time. I could have been in serious trouble. After that last time, the nurse packed me in ice packs and we finished the spinal tap. I blacked out afterwards but I had survived.
The nurse talked to Thomas and I afterwards. She explained the vasovagul response and what was happenign to my body. She explained caffeine is the best way to counteract and that is why my body craves diet coke. It opens things up and helps me stay alert and conscious. I guess that is pretty important.
I came home to deal with headaches and charley horse cramping in my spine. I ached. I am so grateful Thomas took the day off. I needed him. He calms me. He comforts me.
It was a long day....but ....grateful for the protection and timing of when I passed out. Things could have been much more serious. I'm grateful a nurse and medical professional finally saw what happens to me. Hopefully that will help figure this out. Now to start feeling better so I can get some sleep and get out of pain. .... But I am grateful for all the miracles that continue to be mine.
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