Here's the story.
Josh was away at a conference in Gainesville, FL a few weeks ago to present a paper. That night he shared a room with another professor named Spencer, who is also in our ward here in Tallahassee. Spencer said that at about 4:00 in the morning, he woke up to a loud noise that Josh made. He quickly flipped on the light to see what was going on and saw Josh's body shaking. Spencer, at the time, didn't really know what was going on and tried to yell Josh's name to wake him up. He said that he couldn't wake him, and it looked like Josh was in a lot of pain. He was foaming at the mouth a little and the whole episode lasted about a minute. We now know it was a seizure.
When Josh woke up in the morning, he went into the bathroom to take a shower, unaware of what had happened during the night. When he came out, Spencer woke up and asked him if he was okay. They then saw blood all over Josh's pillow that came as a result of him biting his cheeks so hard during the seizure that it left big bite marks on the inside of both of his cheeks.
Josh spent the rest of the day having, what we like to call, "aftershocks" from the seizure. He would feel okay and then suddenly have a little 30-60 second episode of horrible nausea and dizziness that would go throughout his whole body. Josh got home from his trip around 2:30 and as soon as he walked in the door, I knew something was wrong. I immediately asked him if he was sick or tired. (Josh didn't want me to worry while he was away and waited to tell me about all of this when he returned home). He kept having these aftershock symptoms about every 45 minutes-1.5 hours for most of the day. He was also super tired all day and spent most of the day asleep on the couch. All of the muscles in is whole body were incredibly sore for the next week. I guess seizures cause all of the muscles in your body to tighten up, hence him being sore. Josh kept describing it like his muscles felt like he had just run two marathons.
Luckily, my parents were coming into town anyways for the weekend and my dad was able to give Josh a blessing. We called Josh's doctor and they couldn't see him until Thursday. We got so worried though and needed some peace of mind. There is quite a family history of tumors or other illness in his family, and at the time, all I could think of was the worst. We decided that he should go into the ER so they could take a CT scan. While he was there, they also did an EKG of his heart along with a chest x-ray. All three tests came back clear. We were so relieved. With that being said though, the doctors at the ER said that they only look for big things and a neurologist needs to take a more in depth look.
We saw a neurologist the following week and told him everything that happened. He was very thorough, and we felt like he really listened to our concerns and answered our questions well. We told him about the seizure itself and about all of the "aftershocks," (called auras), that happened throughout the day following. Josh had also been having these auras back in June, but we didn't know what they were at the time. He seemed to be quite surprised that Josh was having as many auras as we described and said that due to the number of auras and the type of seizure, it is much more likely than not that he will have another seizure. We were both surprised to hear him say this as we thought that having these auras was relatively normal after a seizure. Auras are described as small, localized seizures in the temporal lobe of your brain.
The doctor proceeded to tell us that Josh needs to be medicated. He has started an anti-seizure medication. It's something he had to work up to before taking a full dosage. For the first week, he took one pill, the second week he took two and by week three he took three pills, which is a full dosage. The medication has not caused him any major side effects yet, which we are thrilled about. Josh isn't supposed to drive for the first six months after having a seizure. While we were at the neurologist, Josh had an EEG done to measure the brain's electrical activity. He also just had an MRI done to give us a better understanding as to what is causing all of this.
We just got back from a big trip to Utah. While we were there, we talked to one of our good friends who just happens to be a neurologist and specializes in epilepsy. We told him everything that happened and asked him a bunch of questions. His name is Blake and is an incredibly smart, nice guy. We also told him that Josh sometimes has memory problems. Every now and then he has a hard time remembering small, insignificant things. The neurologist asked him what he had for dinner the night before. He was able to get to the memory but it took him several steps. "Okay. Today is Monday, so yesterday was Sunday. We had dinner with the Carrs. There was a crockpot. Roast!" It's a process. Blake said that should get better with time. We have lots of examples like that and sometimes he truly can't remember whatever it is I'm asking him about. He said it's super weird knowing that you should remember something and there's just nothing there.
Blake felt very confident that Josh has temporal lobe epilepsy. He said he will have to be medicated for the rest of his life. Even though epilepsy isn't something to ever desire to have, we felt so much better after talking to him. We don't know the results of the MRI yet but he said he would "bet the farm" that it isn't a tumor causing this. The more we think about it, the better we feel about it. Yes, Josh has epilepsy. Yes, he will have to take pills for the rest of his life. However, the medication is doing it's job, and Josh is tolerating it wonderfully. We can handle taking some pills for the rest of our lives. Handling a brain tumor would be a much worse scenario.
We have been incredibly blessed by good friends and family who have been praying for us, babysitting our kids, texting us to check in, and being there with us through all of this. Josh has been feeling really well lately. He may be a bit more tired than usual but that may just be because we've been incredibly busy. We will find out results from the MRI soon, but we are expecting it to be clear. Having epilepsy in today's age is really hopeful for leading a totally normal life. There is great medication and good doctors that will take care of my sweetheart. I couldn't ask for anything more. We will keep everyone posted if we learn of anything else. In the meantime, we would really appreciate prayers in his behalf. We love you all.
