ENCEPHALITIS CASES

Encephalitis Cases

Pamela

It was late November; both my six-year-old son and I had taken ill. We had flu-like symptoms. I felt so awful, I wanted to find a doctor who was close. My next-door-neighbor at the time was an internist so I went to his office. When they took us to the exam room, I remember lying down across the chairs; I couldn't even sit up. They took a culture for strep throat and ran blood tests. The doctor said that the blood work didn't turn up anything bacterial, so it must be viral and told us to go home and treat the symptoms (bed rest, fever reducers, pain relievers, fluids, etc.).

A few days later, I began to have terrible headaches. My son was already back at school. I recall my neighbor asking whether my neck was stiff and it was not. He mentioned something about a lumbar puncture, but after questioning me about symptoms, he dropped it. I began feeling better and for a couple of weeks, things felt back to normal. Then in early December I felt "strange," and sat on the stairs and just put my head down for a bit. When I sat up, I told him that I felt like I had lost some "time." That night we were having dinner with a student of his and his parents. While we were getting ready, I had that same funny feeling of a gap in my linear time. We were standing in line at the restaurant, waiting for a table, and I had that strange sensation again, sort of lightheaded and apprehensive all at once. I knelt down to talk to my two-year-old daughter, thinking no one would notice anything was wrong. The next thing I remember I was being carried out of the restaurant on an ambulance stretcher.

I had gone into a grand mal seizure. Fortunately, a physician was in the restaurant and she came over to help and called 911. Our friend and his parents took our two children over to the neighbor's house (the physician), and he was called to meet us at the hospital. I remember arriving at the hospital and then nothing until I was in the ER. I went into status epilepticus and they gave me a massive dose of Valium intravenously to stop the seizures.

The next day they took me by ambulance to another hospital for an MRI and CT scan. I do vaguely re-member being put in the tube for the MRI. That's the only memory I have until I woke up in my hospital bed. The rails were all padded and my arms were restrained; I was on an IV. I called out and a nurse came in and said I was restrained so I wouldn't hurt myself or pull the IV out. I think this was a couple of days after I had been admitted, or maybe three. I called a friend on the phone who was amazed that I knew her number and could call. (I would later have severe memory problems but only with words, memories, processes, and names. I could remember all types of numbers: drivers license, SSN, bank accounts, phone numbers, etc.)

They had done a lumbar puncture in the ER, which told them I had encephalitis. They didn't know the cause but they ran a whole panel of blood tests. I don't know what the CT and MRI showed; it's possible I was told but I don't remember. (My husband and I are now divorced and I don't think he recalls either.)

I went home (3-5 days after being admitted) with a prescription for dilantin. I thought I was fine and on the road to recovery, but a few days later, I began having new strange sensations. It would start with a dis-connected feeling. Then I would begin having shooting pains in my forearms and I would clutch them to my chest. I would smell something like Clorox bleach or sometimes an electrical odor. What was happening was I was having some new sort of seizure. I could hear what was going on around me but I couldn't participate. If asked a question, I couldn't answer. At the same time I could hear everyone around me, I would be having a simultaneous out-of-body experience. But when it was over and I was asked what happened, I couldn't tell anyone; I couldn't remember.

My husband started traveling again and my parents came over to sit with my two-year-old and keep house for me. As these episodes got more frequent, I insisted that I be taken to a doctor because I thought I was going crazy. My husband came home and took me to a neurologist. I had an episode in his office. He scheduled a follow-up appointment for a month later. I told my husband that I could not go on like this for another month and that he had to find another neurologist. Our next door neighbor recommended another neurologist. While in his office, I also had an episode. He immediately recognized it as a complex partial seizure. Dilantin does not work on this type of seizure, so he prescribed Tegretol. I hated the Tegretol. It did control the seizures, but it made me feel drunk and lethargic. It is also metabolized very quickly, so I had to take it twice a day. Over the span of the next two years, I had very frequent EEGs to monitor my condition. They showed slowing of the brain waves with spikes.

Three years later I was able to be weaned off the Tegretol without any additional seizures. During this time, I had lots of problems with processes. I forgot where I hid the children's Christmas presents. If I un-loaded the dishwasher, I didn't know where to put my dishes. People I had known for years were unfamiliar to me, and I didn't remember their names. On the other hand, I would be convinced that I knew ordinary strangers but just couldn't remember their names. They all looked familiar to me.

Because all my brain damage was in the left temporal and left frontal lobe, I had difficulty with words. As a writer, this was the most difficult thing for me. I could never find the "right" word. I still have difficulty with "grabbing" the right word and often find myself reversing letters or typing homonyms. I have parts of my memory that are gone and I guess will never come back. I also have some of the pre-seizure symptoms from time to time, but they never progress into the seizure. When I'm very tired or stressed out, my brain often feels irritable or sore. Too much of any single stimulus or handling multiple or competing stimuli can stress me out (sounds, crowds, lights, etc.).

When I am tired, I feel myself reaching a threshold or a limit, where I have to remove myself from the situation. If I'm really tired, I can't make even the simplest de-cision. I still have some twitches from time to time in my left hand, and it will just suddenly open up and let go of whatever I'm holding. I'm also more emotional; things touch me more or maybe I'm just less able to control my reaction. I'll cry over a beautiful poem or nature scene or music. I've begun having migraines again in the past three or four years and they are getting worse.

Still, I've regained much of my mental capabilities. People who knew me before say that I'm different now. My mother in particular grieved for who I was. It is so hard to tell people that you can't be what you don't remember. I guess my personality has changed some-what. I only know that I've been told I'm different now. But I feel very lucky. I've been able to learn to write in a new way, with lots of tools, and I think my writing is better. I can't multi-task like I used to, but I think I have a much calmer personality now.

They finally found out that my meningo encephalitis was caused from mononucleosis. The first panel they ran showed elevated titers, but they didn't know until they ran a second panel much later. Mono was pretty unusual for someone in her forties, even more unusual to have it develop into meningo encephalitis.

I'd be interested in hearing if anyone has similar post-encephalitis symptoms.

Thanks for the chance to share.

Pamela
Austin, Texas. U.S.A.

Posted: February 18, 2008

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