Herpes Simplex Virus Encephalitis Lived Experience – Audrey’s Story

Below is Audrey’s Herpes Simplex Virus Encephalitis Lived Experience.

Symptoms

I was going on a long weekend trip with my daughter and I felt a little bit of a headache, but I did not think anything of it. We arrived at the mountain cabin and my bedroom was upstairs with a beautiful view of the mountain, trees, and the sun setting.  I went into the bathroom and had this overwhelming smell in my nose. I called my daughter Mason to come in her thinking it may be something that needed fixing, but she could not smell anything at all. We went out to eat that night at one of my favourite places, I did not have my normal appetite, and I was not very concerned about that.

The next day we went mountain climbing. We drove to a town nearby and I began to feel nauseated but again I ignored it and blamed it on the high altitude of the mountain. We hiked up to the top and took pictures. I was watching my daughter’s dog Kado and talking to her and her fiancé to keep my mind off the nausea. We finally got down the hill and met my daughter’s fiance’s mother for lunch in the downtown market. Apparently, I told them that I was feeling sick, and they said they wanted to take me to the hospital, but I said no. I do not remember too much after that other than I really did not eat much for the rest of the weekend. I was still smelling the odour in the bathroom, and I had a splitting headache like a migraine.

On Sunday morning I woke up and told my daughter I needed to get home. It was a two-hour drive and she said she would drive me. We got to my house, and I went straight to bed. My husband was in California for work and was not expected back until Tuesday so she told me that they would stay the night. We all had to work the next morning and I didn’t want them to stay but they insisted because it didn’t feel right.

The next morning, my daughter took her dog Kado outside and said she saw me from the door window, and it looked like I was on my phone. She went in and started getting all their things ready to leave and went into my bedroom and said my dogs were lying next to me in my bed and I was having a seizure. She screamed for her partner and my other son, and they called 911.

The fire department got there while my daughter was holding me, and my son Ian was on the phone with 911. The ambulance had not gotten there yet but the firemen came into my bedroom. The fireman looked at my daughter and said what is your mother’s name and she said, Audrey. So, he shouted my name and all I remember was the midsection of his body over me and my son, in the background on his phone. Apparently according to the fireman that if you are seizing that you shout at the person to trigger them.

Treatment and recovery

They took me to the first hospital where I had another seizure and they realized that they needed to move me to another hospital to determine what was going on with me. They transferred me to another hospital and after one more seizure and a lumbar puncture and head scan they determined that I had meningitis as well as HSV1 encephalitis. From there they put me on Keppra and an IV drip with Acyclovir that I was on for six weeks.

 

I did not know the names of my children. I did not know how to speak or walk, nor did I know what had happened to me. They sent me home after being on the drip for a week. I had to attend speech therapy where they asked me if I could name five animals. I could say dog and cat but could not express any other names. I still have issues today about saying words and spelling them now. I remember that after I got out of the hospital, I had to learn how to walk and read again also.

I was on leave from work for four months but begged my neurologist to sign the forms to let me go back so I could use my brain more. It was not hard going back since I had done the job before. The main changes were to my short-term memory. So, anything that had happened in the year before I fell ill, I forgot. For me to remember things that happened before that year people would have to bring them up to trigger my memory.

I was working again for a month before COVID hit and our university went remote. I work in research and help professors apply for grants, so my work was easy to do remotely. But what I found was I did not like talking to people and had a short fuse. My tolerance was so low that I did not want to return to in-person work so I went to my neurologist and got my remote work extended for another six months. I have since retired because I had enough government years to do so.

 

Present day

I have pains in my body every day. Anything that happens to my body is ten times worse than it used to be, for example having a bruise or a bug bite. It takes much longer to heal those things. I still have headaches and keep on taking Keppra as my type of encephalitis had a 50% chance of causing me a seizure if I do not. So, I’m two and a half years into this and still remembering things. It’s hard to explain but I still feel different. For around four months after I got out of the hospital, I did not talk very much. And a year later I started to work out again, but I am a little clumsy and fall over a lot for some reason.

I thank God every day that my daughter stayed that night and found me and that I got the help and diagnosis I needed. I will add that a month prior to falling ill I had a bad case of what I thought was poison ivy. At the time I went to urgent care, and they gave me some pills but now looking at those pictures I believe I was bitten by a spider of some type. Who knows?

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