I had a fainting spell a week ago last Saturday morning at men's choir rehearsal and then fainted the Wednesday night after waking from a dream. Also the following Tuesday while lying in bed an hour before bedtime while examining a wound from one of my Heparin injection sites and then a fourth time at the doctor's office Thursday after my appointment to talk about it and went by ambulance to the Fairview-Southdale ER where, after many tests, I was discharged and told to get in to see a neurologist as soon as possible. Kalyn and I called around all day Friday and couldn't get in until the 17th. I fainted (some medical professionals call it having seizures or spells) a total of 15 times Friday including sitting in the car, standing in a store, and twice at work (once standing). We decided to go to the Fairview-University ER in the hopes of being admitted until we could get this figured out. I was now having an incredibly frightening set of medical circumstances. I have now seized from the standing position 7 times, many while sitting, and the rest while lying down. Many of these have been in public. I seized twice at work Friday morning where I was told by my boss and the majority owner of the company not to come back until this was figured out. Understandably, they can't have me seizing at work.
I was finally admitted to the hospital late Friday night/early Saturday morning. While undergoing testing, I seized 6 times Saturday, 8 times Sunday and 11 times Monday. Saturday's EKG was unremarkable as was my head and spine CT scan. Sunday and Monday I was being recorded 24/7 with video and audio while also recording my electrical brain activity through a continuous EEG. I was diagnosed late Monday morning with the condition Non-Epileptic Seizures. This condition will likely leave as suddenly as it came on, and it has no known cause or cure. The diagnosis is made by eliminating any electrical and medical causes for the seizures. When those are eliminated, this is the diagnosis by default. Though there is no real "cause", stress seems to increase the likelihood of their presence and severity, and for me drug interaction has not been ruled out as a contributing factor as well. I have a follow up with a Fairview neurologist, Dr. Fiol Thursday morning and at that point hope to learn more about the condition, its treatment, and how I can continue living my life with minimal interruption. I will follow up with my psychiatrist and therapist as well. I need to check into short and long-term disability policies at work in case I cannot work at 100% for an extended period of time.
From what I have been told by Kalyn, my seizures come on very suddenly, my body goes completely limp and it looks like I just go to sleep for a while. Sometimes I mumble, sometimes my lower lip quivers and my limbs move around at random. During the seizure, my eyes open a bit as I look around. Right before I come to completely, I thrash around and become VERY scared and disoriented. I look around trying to figure out where I am and why I am there. It takes a minute or 2 for me to mentally process and work through what is going on, who is with me, and finally conclude that I have just finished a seizure and can relax. I have no memory of the seizure or what happened starting a few minutes just before it commenced. During the first few dozen seizures, I was brought out of them with a sternum rub, which uses pain to wake a person up and bring them back. We know now that staying unconscious is causing no damage to me or others and I am allowed to come out of them under my own power. They usually last 10 minutes or so, but have ranged from 5 to 35 minutes.
That's the biggest medical news that has hit me lately. I also bruised a left rib December 2 and I still wear a brace for that. That injury gives me level 6-8 pain and is treated with 10-40 mg Oxycodone every 4-6 hours PRN. That was bruised during a wrestling practice at our house where an ex-wrestler coworker of mine was showing Lucy some moves and expanding her wrestling repertoire. Kalyn and I were being used as a demonstration and my chest came down on top of Kalyn's pelvic bone and I heard a crunch. In addition to all this, I also have ringing in both my ears and was told last Wednesday that I have a 10 decibel hearing loss in my left ear. This loss is likely permanent and is due to Otosclerosis. It will likely get worse as I get older. That news hit me exceedingly hard because, as a singer and serious music enthusiast, my hearing is tremendously important to me.
My LV continues to be mostly dormant for now, thankfully. If I was in the midst of a LV flare up at this point, handling it on an emotional front would be especially challenging. I will be seeking additional professional mental health support so I don't slide back into familiar depressive habits. I do have a great small group of close family and friends that I talk to continuously throughout the day for their support.
For now, I am living hour by hour. There are some living changes that we figured out right away, like I can't drive, which is a restriction placed on my by the University doctors. I also need to sit while showering and can't take a bath, which is a drowning risk. My new mantra is, "if I seize right now, would I and others around me be safe?" If the answer is no, I need to make a change. I spend very little time alone now, I can't cook or be around boiling water or hot pans, I rarely stand for significant time periods and I walk as little as possible, even around my house. The subject of wearing a helmet has already come up and, during a seizure at the hospital, I hit my head hard enough that they ordered a head CT scan to rule out internal injuries. As the first day out of the hospital has progressed, it is starting to sound like a better and better idea. That may allow me to travel in public and walk and stand while limiting my head injury risk. I hope I am able to get past the "self image" issue enough to be safe. I have fallen enough now that it's starting to make sense logically, though my social sense is still struggling.
