It's been over a year since I've posted on here, but I thought it would be a good place to collect my thoughts, process the test results, and give you all a health update. As most of you have followed my journey, you know that the last six weeks have been jam packed with hospital admittance's, seizures, and other various issues. Now here I go to try and summarize what happened...
In December of 2020 I started the month out with a pretty good concussion and began January with a bad case of Covid. I was in and out of the hospital for it as it effected my lungs so badly. In the recovery time period as I went back to work, I had to have restrictions placed by my doctor because the vertigo and migraines were a difficult side effect to handle every day. By March I was having nightly seizures that would last up to two hours at a time. It came to a point that I would have to lay in the backseat of my car after work since I knew I wouldn't be able to make it home and be seizing for hours, recover, and try and make it home a little while later. I was constantly hurting myself by punching my knuckles on the car window in an uncontrolled seize. I would come out of it in tears, frustrated and not knowing what to do. I assumed these were the previously diagnosed Psychogenic Nonepileptic Seizures (PNES) and knew there was nothing that could be done besides just managing my stress levels which I was doing my very best to do.
One evening I hit my head while having a seizure in the car and ended up in the ER the next day because of my concussive symptoms, and the fact that the seizure frequency was picking up. I was admitted and had extensive EEG (brain wave) monitoring done. By the end of the week there, the doctors determined that I did in fact have epilepsy...something I never thought I'd hear again. They put me on an anti-epileptic medication which worked for about four days and then it was back. Only this time I would have eight to ten seizures at a time. Easter rolls around, and I ended up hitting my head really hard multiple times while seizing, coming out of it with a splitting migraine. The next day I was back in the ER having multiple seizures every 20-30 minutes with the doctors unable to get them under control. I don't remember four of the six days I was there because of all the seizing and medication. The guess is that I had about a hundred seizures in one week. Halfway through my stay in the hospital the doctors came in and told me that the previous EEG was not read correctly and that I in fact did NOT have epilepsy but instead the same previous diagnosis of the Psychogenic Seizures. I instantly burst into tears knowing that we were back to square one; to an untreatable diagnosis; to what now would be a life of constant seizing. How would I be able to live any sort of life having seizures every thirty minutes? The Lord was present even there in my doubting, anxious heart, sorting out the details, and giving the doctors wisdom on what to do next. Instead of sending me home seizing (like they did years ago when I was first diagnosed), my doctors brainstormed, changed up a good chunk of my medications, and were able to stabilize me before letting me go.
I was wonderfully blessed with a whole week without seizures, and then went in to a different hospital for more extensive monitoring and testing for another week. This is where I began to understand my diagnosis in a way I never understood before. I was hooked up to another EEG machine in the EMU (epileptic monitoring unit) this time for five days, with electrodes super glued to my head, as the doctors tried to induce my seizures so they could capture the events I was having. They decreased my medication, did strobe lights, and even considered hyperventilation...except that I was already having multiple seizures as it was. Mind you, I had had a migraine pretty much every day since I had hit my head on Easter three weeks prior so they had been trying to manage that during my time there.
Dr Jeffery was my doctor with an Australian accent who came in to check on me every day and ask questions on how I was doing. The day before I left (which was yesterday), Dr Jeffery would explain the findings and help me understand my condition. This I what I would like to share with you as well. He likes to call them Psycogenic Nonepileptic Events (PNEE) so as not to get it confused with epilepsy form seizures. Basically there is a loose connection between my emotions and my motor control functions in my brain. In a normal human being, when triggered or experiencing a difficult situation, they will be able to take those thoughts, rationalize them, maybe tell themselves to calm down, and slow down that fight or flight response. However, in someone who has PNEE, they don't have the ability to rationalize these thoughts because of this loose connection and this trigger or situation causes a complete switch from the emotions part of the brain, to the motor control functions part, causing an uncontrolled event due to a fight or flight response. This can be caused by past trauma from six months, to one year, to ten years later. However, some people who have this disorder did not have an abusive upbringing or traumatic event; though it isn't very common. So it can literally affect anyone. The interesting thing was that he said if he were to trigger me now, he could talk me through the issue but I would most likely still have the seizure because of the fact that it had already made that switch. He acknowledged that these types of events I'm having are not at all in my control, which I appreciated because most doctors don't even know what PNEE is, let alone know that you're not faking it for attention. They are coming from a certain part of your brain...something you have no control over.
The other thing he mentioned which I thought was quite interesting, is that he actually thinks my migraines are playing a role in my events. It makes sense that when the migraines got worse, the seizures got worse. When I hit my head during seizures, the migraines would be almost unbearable for the time afterwards along with the increased seizures. It was a constant vicious cycle. Every time I do have an event, even today, I will get a worsening migraine after. To the point that I'm losing my vision and I wasn't sure what it was from. Dr Jeffery said that because of the nature of my head injuries, that it has put me in a state of status migrainosus, which is essentially a state of constant migraine that doesn't go away. He believes that the tension in my head is actually triggering my events He thinks my head injuries have played a significant role in the frequency of my events, and wants me to start on these supplements to hopefully help the migraines and thus decrease the seizing. He suggested I take NAC: N-Acetyl L-Cysteine which is an amino acid that we don't get enough of in our food that is good to help with head injuries. I will also be on magnesium and vitamin D3 to help with the migraines as well. There is a monthly shot I will be doing called Emgality that is apparently working wonders in the migraine communities so be in prayer that insurance will cover it after the appeal since it cost's $1,100/mo!
So we're slowly but surely making progress and figuring things out. Coming up with a plan. And understanding my own disorder better. I haven't even had a seizure in 19 hours. Thank the Lord for that! As I was leaving the hospital this afternoon for Lord willing the last time in a very long time, I had so much more peace. Just knowing is half the battle. Knowing what I have and understanding how it works in regards to my own body. To have had such incredible and caring doctors over the last six weeks especially, has made such a difference and has ministered to my heart, knowing that God placed them individually into my life to show me that He was still there even in those dark days. God works in mysterious ways, lemme tell you that! Even though I've been writing this for the past 3 hours with what feels like a jackhammer banging around in my head, struggling to see the words on this page, I am so grateful for the faithfulness of God. I have spent the majority of the month of April in a hospital bed, but God was present. I know that for a fact. And to have Someone you can trust with your life...now that's a big deal.
"He is at my right hand, I will not be shaken." -Psalm 16:8
