Our Journey with Epilepsy

My name is Heidi and my husband is Dave, we are from the Ohio area. Our story started when one day my husband got up and was sweating so bad that his clothes were soaked. He said his stomach was upset but wanted to try to go to work- this was 2020. I told him go into work and if in a hour you are not doing better, we're going in to the hospital as this was not normal. I waited at his job. About an hour later someone came running outside saying they found him unresponsive in the back of work so 911 was called. They showed up and asked me if he was a drug user which he was not. I said no but the police insisted that drugs had something to do with it and went looking all around where my husband was laying and in his pockets looking for drugs. I was so angry at this point because that wasn't the issue and they were not worried about listening and finding the real issue.

Hospital visits

We got him in the ambulance and got to the hospital. Same thing from the doctors- does he do heroin, etc? No I said so they did a drug test on him which came back negative. Instead of looking into anything else they treated us like crap and sent us home. We stopped at the gas station and headed home. I got about 2 miles from the hospital and he just stopped talking and I looked over and he was full on shaking and turning blue. I stopped the car and called 911. I have never experienced this so I didn't know what to do. They brought him back to the hospital. Now they suggested he went into the gas station bathroom and did some type of drugs. They kept him there and did a CT scan and some blood work but didn't find anything. They just kept harassing us both about drugs. They kept him over night and then let him go home.

Epilepsy diagnosis

He started having grand mal seizures weekly at home usually while he was sleeping. Finally after a couple months of this I found a neurologist to try to figure out what was going on. It took probably four months for them to actually diagnose him with epilepsy and start him on medications. A week or two would go by and he start having them again. This continued and they were changing medications and changing the amounts and nothing was keeping him stable. Through all of this, I slowly started to notice his personality changing and his memory going down hill like forgetting things from the week before or certain things that have happened in our life. It was effecting his long term memory and short term memory. They did many tests and all tests showed them coming from the right side of his brain. Four years later they finally say the medications aren't working and we need to consider surgery. For a year and a half we did nonstop testing for the surgery.

Surgery

In the meantime he was still getting seizures and the medications were not working. I finally asked them if this is something that he was going to die from? They just said if things keep going the way it is, it is possible. We all decided on VNS surgery. He finally had it July 31. Everything went well but I have noticed that his memory went from forgetting a week ago or yesterday to him forgetting a half hour ago. His memory has gotten so bad it feels like we are dealing with dementia to some degree. He now has four types of seizures and one is the one you can't see. We are going to this program at the VNS. They were not going to turn on the VNS simulator for a few months so they could gather enough data. The other day we were told they are turning it on because of how much data they have got from the VNS over the past month. I'm grateful they are turning it on early. But the other part of me is like that means he must be having a lot of seizures we can't see to get enough data to turn it on this early in the game.

Still many questions

Right now we don't know exactly how many seizures he is having that we don't see. Those are even more scary because you can't see them or know how long they last. He is on four medications and is still having seizures we see and don't see. It's hard for him because he feels like less of a man not being able to do a lot and having to have someone with him all the time. His memory issues really bother him which I don't understand but I do to a point. They don't know why he even started having seizures to begin with that bothers both of us. He is now 41 so he is still young. On my end we have no support groups here and we don't do social media. We have a few close friends and some family that are very supportive.

Need support

We don't have anyone that can actually relate to either of us. It is hard after 22 years of being with him to watch him go through all of this and slowly losing his quality of life. And it's a lot on me as I'm trying to be a wife and then trying to separate being a caregiver. It is stressful on our whole marriage with his memory issues and his personality changes. It's stressful just as a whole doing everything everyday that has to be done for all he needs plus normal everyday responsibilities. Sorry this is so long, I probably didn't get everything but I tried to get as much as I could remember. There is so much that goes on it is hard to remember it all. If there is anyone out there with a similar situation that just wants to meet new people or wants to talk or has any suggestions, I would so much appreciate it. It would be so nice to find people that can relate on his side of it and the caregiver side of things. Thank you for taking time to read.