John was diagnosed with Temporal Lobe Complex Partial Seizures this Thursday. They are a form of epilepsy. It was like a HUGE weight had been lifted when the doctor confirmed it. I on the other hand already knew this, I have seriously researched everything on seizures and epilepsy and knew exactly what kind he had. It really probably sounds weird that we are happy about this news but John has been through a lot with this and it has been really hard on me as well. I will start from the beginning and let me tell you it has been going on for a freaking long time!
So when John and I got married we got pregnant after only being married for 4 months. Well that put a lot of stress and pressure on John. He was only half way done with his bachelors degree and we really weren’t ready for a baby. We then miscarried taking a lot of pressure off John but he started to notice he was having these times where he wouldn’t be able to talk for just a few seconds and he would just stare off. He just thought he had a lot on his mind being married, thinking he was going to have a baby, plus working, and school. So eventually those staring spells just went away and life had calmed down.
Probably a year and a half or more went by and John started working in the ER full-time, was in his last semester at UVU and was serving as the Pre-PA Club president at UVU. Oh and he was applying to PA schools. He would go to school at 8 in the morning, get done with school sometime around 12pm or later, then go to work at 5pm and work until 5am the next day. He was busy and his body wasn't getting the rest it needed. Well those staring spells came back and again he thought it was just stress and anxiety. He had been to the doctor about these staring spells because I forced him to go. The doctor gave him some anxiety medicine but that didn't fix the problem. Once school was over he was able to start working normal hours at the ER and those staring spells went away.
6 months or so went by and life was good. He had been accepted to multiple PA programs and we found out we were having a baby. The day after we found out John didn't get much sleep bc he had an early shift at the hospital and I noticed he had a staring episode. I was super frustrated and was almost mad that they were back again. He just tried to shrug them off.
Well after probably 6 more months went by those staring spells got worse and began looking a lot different. I was really concerned and forced him to go to the doctor. I thought they might be seizures. I had seen a show on epilepsy and it sounded a lot like what John had. I went with him to the doctor appointment, I think I was about 8 months pregnant and really wanted this figured out. He was scheduled for an EEG, this is when they hook a bunch of electrodes to your head and can see the electrical activity of the brain. It took awhile to get the results. We had already had our baby and moved to Vegas by the time we got the results. The EEG showed some spikes and sharps in a certain area of the brain, meaning he could be having seizures but the test was inconclusive and needed further studies to be diagnostic of seizures. When I asked John the results of his tests he said everything was FINE!!! No it wasn’t fine. I knew something was wrong and he was in some serious denial.
The seizures were starting to happen more often. We finally got on medicaid because I stay at home with Sophie and he is a full-time student and his program prohibits him from working. He finally went to the Neurologist. While meeting the doctor he actually had a seizure in front of him. The doctor thought they could be seizures and wanted to order more tests. For some reason our Medicaid changed and we had to start all over again by going to a primary care provider and get their referral to go to another neurologist because the one we had seen didn't accept the new Medicaid. I was feeling pretty defeated and thought this was never going to end. It felt like we weren't ever going to find out.
After a long road, a lot of fasting and praying we found out on Thursday exactly what is going on. The hardest part of this for me other than having to see John struggle was not being able to open up to anyone about this. He really wanted to keep this private. No one, not even our family knew this was going on until about 9 months ago.
John's seizures aren't probably what you think of when you think of someone having a seizure. He doesn’t fall to the ground and start shaking. His seizures only last for about 20 seconds. He can’t speak, his legs and sometimes his hands move like normal body movements but he doesn’t have control of them and he turns really red in the face like he’s holding his breath. He isn’t even aware sometimes that he had one. After he has a seizure he can go back to whatever he was doing. Sometimes he will slur his words right after they happen too.
I am sure you can only imagine how hard this has been on him; being in PA school is hard enough but having to deal/ hide this has been awful. He has seriously done so well in school and has never had trouble with grades or anything. If you have any question feel free to ask. Keep him in your prayers and pray that this new medication that he is on will keep him seizure free!
