Starting this blog was a big step for me because I wanted to share my experiences with Dysautonomia and other chronic illness issues. My posts could be very lengthy but I really didn't write your heads off but this one might be a long one. It is an introduction to my journey of the onset of my symptoms, multiple doctor visits, finally getting diagnosed and finally day to day living.
Syncope: temporary loss of consciousness caused by a fall in blood pressure.
"Picture it" (a la Sophia Petrillo) Brooklyn, NY December 2000. This was the first time that I fainted. I was in the hospital after I had my gallbladder out and my doctor wanted me to walk. I didn't feel like it because I still felt a bit woozy. I was only 22 at the time and they felt that I was complaining too much and should get up and walk. This was also at the time when they had those cumbersome leg compression thingies hospitals used to prevent blood clots. My doctor threatened me with hooking me up the leg compression devices that looked like scuba gear or something they used to treat you for the bends. I still didn't want to walk because I didn't feel well. After much prodding and poking by the doctors and my mother, I got up to walk and bit and then went to the bathroom. I am not sure what happened but I woke up on the floor with people yelling my name. This was my first known faint. Needless to say, I spent the rest of my time in the hospital listening to the hum of my compression chamber leg thingies.
The next time that I experienced a full faint I was at work in 2007. I was sitting in a co-workers cube and we were laughing at something. I mean we were laughing HARD. Again, one moment I am laughing and the next I am on the floor and people were yelling my name. I was still mid-laugh so I probably wasn't out too long. I started to realize that I would become light headed from time to time and I just thought that I was tired or thirsty. I had no idea that this was just the beginning for my near constant presyncopal existence.
I remained relatively symptom free for two more years. However, that all changed in August 2009. I talked about it in this post here. I also began my first experience with not being taken seriously by doctors (that will be it's own post). I had a CAT scan and blood drawn after a doctor reluctantly ordered them and they were good. I went home not being able to shake that headache or feeling of nausea. I became very weak quickly and I soon wasn't able to get out of the bed. I thought I was dying because this came on me very quickly but with each appointment and scan, I was seemed medically "fine". I didn't know that besides MRIs there are MRAs and MRVs, yeah I had those too and they were all unremarkable. That is medical speak for nothing is wrong with you.
I was misdiagnosed as having Idopathic Pseudotumor Cerebri by a Neurologist who treated me during this two to three year phase. He meant well but he was really a glorified pusher man. He gave me drug after numbing drug to "help" with my debilitating headaches. Thankfully, I didn't get hooked on any of the pills. I am the type of person that stands by the fact that if the medicine doesn't work then I won't take it. It was serious trial and error with Topamax, Gabapentin, Toradol, Imitrex and many, many others. I think I ended up with cognitive issues from higher doses of the Topamax. For example, I will know the word for pen but there are times when I just can recall it's name. See what I mean?
During this time I would go through cyclical periods when my body would seemingly recover and I would wake up and all was right in the world. I started to question my own sanity because I would be sick! I mean I would vomit constantly, I couldn't stand without almost passing out, I couldn't use my limbs too well, I couldn't speak coherently, I couldn't think, I couldn't eat, I couldn't see at times because of the blinding pain (no pun intended), I had facial tingling and numbness and still my constant companion of a crushing headache. I didn't respond to any of the above meds or the many that I forgot that I had taken. It was like my body would just snap out of it. So I could see why many doctors doubted me on one hand but on the other, I knew something was wrong.
At this time I was also seeing an Opthamologist who thought it was best for me to try a different approach because all options were exhausted with my current Neurologist. Therefore, he referred to a Neuro Opthamologist at Johns Hopkins to do a work up of the Idopathic Psuedotumor Cerebri and one test that I had was an eye sonogram. People I am telling you to clutch your imaginary pearls if you EVER have to get this test done. I hated every nano second of it and I am glad that I only had one eye done. How I managed to cry with a probe in my eye socket took a lot of talent. However, I did learn one thing. I didn't have the dreaded IPC and I was....wait for it... referred to ANOTHER Neurologist. This one, also at Johns Hopkins but he was in the Headache Clinic.
My journey is not yet complete because I wasn't actually diagnosed with Neurocardiogenic Syncope until 2016 so we have about three more years to go. I'll share more in another post but I want you to get a feel of what I experienced during this time. Mind you, when all of this started I had a nine year old and 15 year old, I worked a full-time job and I was also a single mom. Sudden onset of illness is scary and it was hard when you have ones that depend on you. It is not impossible. If you are reading this and you have just been diagnosed or if you having something going on and you are not sure what to do or where to start, you are not alone. You can do it.
One day at a time.