Hatice shares her experience of unknown cause encephalitis

My name is Hatice, I am 29 years old and I live in Turkey. I want to tell you my story.

in July 2021, I caught the COVID-19 for which I took immunosuppressive medications. These drugs were later removed. I recovered within 2 weeks and there were no problems with my health. I returned to my normal life and was able to continue my work.

About a month later I woke up in the middle of the night with chills and a fever. I took paracetamol and went to the doctor, where I was told one of my blood tests was high. I started taking antibiotics, but was feeling worse day by day. With persistent fatigue and body aches, I rested at home for a week, but I never got better. Day by day everything got worse. I don’t remember exactly what I felt. I don’t remember what I did. Eventually, I fell into a coma.

One day, when I opened my eyes, I was in the hospital. I had lost consciousness and was hospitalized for a week. I couldn’t remember what I did in a week at home, my recent past, my passwords and even the names of some of my friends. When I fell into a coma, cerebrospinal fluid was removed and examined but nothing was detected.

After I was discharged from the hospital, I had memory and focus problems for a while. My electroencephalography results were distorted, and one day I had a faint-like seizure lasting a few seconds. Afterwards, I started to continue my life with epilepsy medication. This whole process was very difficult both psychologically and physically.

During my recovery process, I used my medications regularly. I stayed away from loud environments and from anything that could trigger an epileptic seizure. I took care to consume foods that would be good for my brain. Three years have passed, and I have started the process of tapering off my epilepsy medication. I do seem to be getting better. If I had known what encephalitis was and if my doctors had been aware of it, everything would have been different. However, I am very lucky to still be alive.

What I’ve learnt

Although my close circle is sensitive to my situation, many people may have thought differently about my memory loss and momentary forgetfulness. They never knew what I went through. The most important thing on the road to recovery was to be happy, to have my loved ones by my side and to a have little hope…

I support awareness events for encephalitis. We are not alone! You can share these experiences of mine; I’m proud of it. If I help even one person with this disease, I will be the happiest person in the world.

(story published August 2024)