The Chronic Chronicles: Health Update #6 (with video)
It’s been a while since I’ve shared an update on my health. I have more to share so I figured I’d do that now. First, if you’d rather watch my health update in video form, I’ve recorded it and uploaded it to YouTube. I’ll link it here.
If you’d like to continue reading, cool beans.
First off, I had my EEG. It was a 24-hour ambulatory EEG and I recorded a total of 10 seizure-like activities/seizures. I got the results back later the next day and it showed that none of the activity I recorded was epileptic meaning I do not have epilepsy. However, I am still having seizures. These are called non-epileptic seizures.
I also had an MRI done. The results came back stating that I have lesions on my frontal lobe and one of my sinus cavities in my brain is narrowed making it hard for blood to flow properly.
Today, I went and met with the POTS specialist and I guess you could say I was SUPER nervous and SUPER excited because I believe we’re heading in the right direction with POTS. But honestly, from start to finish, this appointment was anything but ordinary, and I never in a million years could have predicted its outcome.
First, as I’m sure you know if you’ve been following along on this journey, I struggle to walk or stand for long periods of time. My heart rate spikes and then I feel faint or even faint. For this appointment, I drove myself and couldn’t find a spot to park that was close. I then had to walk all the way into the hospital, make my way to the second floor and then walk a super long way to get to the patient room once I was checked in. My body had already had it before the appointment started.
My heart rate was in the high 150’s, and my blood pressure was 135/105. They did an EKG and then I felt like I was going to pass out so I lay on the table/bed until they came in. First, an intern came in to check on me. He asked how I was doing and I was honest and said I really wasn’t feeling well. He listened to my heart and checked my pulse and like hightailed it out of the room to get the doctor because it was high - as we already know.
Super long story short, (if you want the full story watch the video https://www.youtube.com/watch?v=r-TAdTBRhI4) I ended up passing out and having a seizure and scared all three of us (myself included).
I am now wearing a heart monitor for two weeks and will be doing a tilt table test (in two weeks). They doubled the dosage of my heart medication, set up a follow-up appointment for the end of march and they wrote me out of work until at least April. I haven’t been to work since December 30th of last year.
Overall, I am not doing the greatest. I have my good days and a lot of bad ones. I can write (or record) a separate post (or video) on how I’m handling things and what life looks like for me with all of these rising health issues if you’d like.
But yeah, that’s my update. They think all of this resulted from a viral infection I got in mid-December. I haven’t been the same health-wise since.
Thank you for keeping me in your prayers. Please keep them coming. All of this has been super trying on my mental health. I’m sure many of you know I struggle deeply with bipolar (depression + mania) as it is, this sort of just adds an unwanted flair to it.
I think I want to start ending these with things I hope for. Because hope can carry anyone a long way.
I hope to find joy in the little things.
I hope to take an extra moment to be thankful for the life I have even if it’s not the life I thought I’d have/want
I hope to encourage someone else who’s struggling with their mental or physical health
I hope to get better real soon but to be open to understanding that "better" might end up looking different. And that's okay.