ENCEPHALITIS CASES

Encephalitis Cases

Tanja

My name is Tanja. I was 36 at the time of illness. I had Herpes Simplex Encephalitis in October 2004, and at the time I was seven months pregnant. It started with my having headaches, I called a nurse to ask about safe medication during pregnancy and was told to just take Tylenol, which I did for a while. I am a runner and at that point still continued running since I was told that I was probably just dehydrated or just needed to slow down at work to release some stress during that time of the pregnancy. Therefore, I thought I was all right. I kept working as a Recruiter for a large corporation and took my pills not thinking anything of it. I would go home to my husband and children and complain here and there, they told me that they would help me with chores and things so I could get some more rest in between.

Then I started having nausea and at times was throwing up. I called the Health Nurse again and was told that it would be my body reacting to the pregnancy and just a very normal side affect and nothing to worry about. Shortly after that my husband told me that something must be wrong with me since I seem to forget things continuously. He insisted on taking me to the ER, he said "something is not right you need to see a doctor." I agreed at that point since I really did not feel good. For the rest of that day I don't remember anything. Apparently they sent me from the Army Hospital to the Vanderbilt Clinic in Nashville. I stayed there for three days. I woke up at a point and noticed that I was not at home and not at the Army Hospital. I was told that I was to be examined for the pain and to ensure that the baby was all right. I then told them continuously that the headaches had disappeared and that I wanted to go home. I was hallucinating whenever I woke up that things in the room had changed and I feared that the nurses and doctors wanted to take my baby from me. I didn't know why I was so scared back then, which now of course I know that it was another sign of the encephalitis.

Well, I am not sure what kind of tests they ran but they let me go home since I kept telling them that I was OK. I, of course, continued having pains and aches. After the third night, after returning home from the hospital, my husband noticed that I wasn't in bed at three in the morning. He called me on my cell phone and I told him that I was somewhere downtown and didn't know how to get home. I couldn't remember my way home. I don't remember any of this. Well, he asked if anyone was around, which there was a gentleman. My husband told me to give the phone to that guy, which I did. My husband asked him questions about where I parked the car so that he was able to come pick me up. My husband then came and immediately took me back to the Army ER. They did a spinal tab and noticed an immense increase in white blood cells. They immediately flew me back to Vanderbilt for beginning of treatment. After they had laid the culture they found the virus and started giving me Acyclovir. Again I don't remember any of that. I know that it took days for me to know where I was. Well, not really I guess. It took me quite some time to realize that I was at the hospital and which one I was at.

After two weeks there I was sent back to the Army Hospital to be closer to home so that my husband could manage work, kids, and me being in the hospital. After a week or so of that I wanted to go home. I just wanted to be in my own bed. Again I was pushing telling everyone how good I felt. They made me go through all sorts of psychological test at both hospitals, which scarred me very much. My memory would play games with me and I could see by the look on the doctor's faces that I wasn't doing so well in remembering things. I blamed it on being bilingual. I am originally from Germany and came to the States about 16 years ago. We had a death in the family and we really wanted to go to the funeral. I was able to go home, although we didn't make the funeral.

I had to go to the hospital every twelve hours to get a new IV set, which my husband and I gladly did just to be home again. A week after that I had, a nurse come to the house every 48 hours to set up the new IV back. Things were looking better so I thought. After two weeks of that I was told I can go back to work, and drive again but only short distances such as going to work and my sons schools. I was very happy. It kind of felt normal even though I still had some problems remembering things. Everything looked different. There were stores that had been in the area for years but yet to me they seemed new. I had a different taste for foods. I remembered things tasting differently than what they tasted like. I had some serious memory issues, which started to scare me very much.

I always thought that I was left alive to fulfill something and then I would have to leave again. What that was I still don't know. I went back to work and it helped me very much. I still didn't feel the same but it was something normal compared to the way I always felt. I had problems remembering my passwords for various programs we were using and had to ask for help more times than what I was used to, which was upsetting, but I tried to deal with it the best I could. I started having breathing problems. I also started thinking too much about what had happened to me and why it had happened. Everything for me always has had a reason. I thought I was punished for something I did or failed to do. The nurse during a check up told me not to worry about the breathing and at that point sleeping problems since it is very common during pregnancy. I was told the weight of the baby was causing the breathing problems. Then I constantly had to go back to the emergency room due to premature contractions. What I didn't realize at that point was that I always started the contractions when I started being scared about different things like my husband leaving due to the military or having to go to a new place to drop off my kids.

My memory didn't want to work well at that point and it scared me. I also thought that I must be retarded or something. I had the feeling that people were looking at me weird but couldn't understand why. It came to the point where I asked my husband for a truthful answer on whether I looked retarded or was retarded. I told him that I didn't want my children to see me that way and if I ever go so bad not being able to remember things that I wanted him to put a gun nearby so that I would just shoot myself. That way nobody would have to take care of me and he would find someone else and everybody could be happy again. I fell into a deep depression I learned later on.

Then on the 31st December 2004 my water broke and I was off to the hospital. I delivered a healthy baby boy at 7.29 pm that evening. I was very afraid of the doctors telling me that they have to put me to sleep to deliver the baby. They did not want me to push due to the left over swelling of the left side of the brain. I thought that I would not wake up again. I thought God just wanted me to deliver this child safely and then he would call me home. I was told by the doctor that "nobody had died yet while under his care and I certainly wouldn't be the first one." :-) I made it as you can tell. I went home after three days and thought things would go back to normal, little did I know.

A week later I started having serious headaches and my memory wasn't working well. My husband didn't wait this time and neither did the doctors. They ran a spinal tab immediately and found an increased number of white blood cells. I was told I must have an infection of some sort. I was transported back to Vanderbilt again. It was hard to believe. The culture was laid and another MRI was taken since I started throwing up again. I was also given the Acyclovir again just to make sure. The MRI still showed the swelling. When the results came in it was not a recurrence. Nobody seemed really sure what it could be so I was told it is probably some sort of Meningitis but nothing serious. They sent some Psychologists in and asked me a bunch of questions. Again I felt scared thinking that they will put me in an institution and I won't get to see my children anymore. I gave them all the answers I thought they wanted to hear. After that they let me go home. Before they let me go they told me that my immune system is so low that I shouldn't be around to many people since I seem to contract illnesses. I was constantly asked about HIV. It made me believe that maybe I contracted something when I was a teenager. I constantly asked my husband if they checked me for it or not. I had thought to remember that they checked at the beginning of my pregnancy anyway. It's a norm I was told. Yet, it still scared me. My mental state wasn't good and I felt it and knew it but couldn't admit to it in fear that I would be put in an institution as mentioned before.

After I was released from the hospital I was given strong pain medication and was told to rest for a little bit longer before going back to work. I was to follow up with a Neurology Dr. at the Army Base, which I did. I was still looking for answers especially why I was still having pains and memory laps here and there. I was told that it would not get any better and I should just get used to it. I was scared and didn't realize it. After a couple of weeks of being in bed in pain and agony I was just ready to die. I asked God to just take me and not just have me lay there and wait any longer. I couldn't bear it anymore. I tried to bargain with God. I was praying for him to take me or make me better and told him about the things I thought I did wrong or failed to do. I learned later that that is what people do at that point of life. I received a call from my dad in Germany which at first upset me very much, but I learned later that it gave me that push I needed. He told me not to forget from what a strong family I come from. We don't give up. He was upset about the things he heard about me handling the whole illness. He told me that I had always been so resourceful in finding out things and to take things in my own hands to finding answers. I then thought about things and started going on line. I learned that a lot of people that go through a near death experience have anxiety and depression problems. I also read up on encephalitis but it always scared me because I had only seen negative things. You don't read about people doing better or recovering greatly after the illness. I also thought that may be I should get a second opinion and went to a non-military Neurologist. I talked to her and within five minutes she prescribed bi-polar pills for six months. I was devastated. I was left with the feeling of having been diagnosed as being bi-polar. I went home crying asking everyone I knew if they thought I was bi-polar. I was told "no" by every one of them.

There I was again. I got the phone book out and started going to a Chiropractic Doctor who told me that he could help with the headaches and also found a depression and anxiety specialist doctor in Nashville, whom I made an appointment with. When I told that Doctor (Dr. Islam) about my last couple of months and about my headaches he did what others had not done for a while, he listened. He didn't treat me like a stupid person that didn't know what she was talking about. I might not remember a bunch of what happened for a couple of weeks other than what I was told and what is on record but I am still a human being. I told him how I felt so scared about what I heard the doctors say about me whenever they stood in front of my door at the hospital before they got ready to come in to check on me. It was like as I wasn't even there for them. Dr. Islam had me answer a bunch of questions and gave me a book on anxiety and depression that he had written himself. He also started me on some antidepressants and Clonepin to sleep better at night to give the brain some rest to recover.

On March 1, 2005 I returned back to work. I had changed and everybody told me so. It was hard to handle but I tried. Again, my headaches started getting worse. Now, having learned a bunch about anxiety and depression I knew I had to do something besides praying for health. My dosages of medicines were increase a little and it seemed as though as long as I was able to sleep well I was feeling better. Then one day Dr. Islam asked me about the things that I used to like doing that I miss doing. I told him that I had always been very active. I used to teach Karate and used to run besides a lot of other things. He smiled and told me that it was time to get that blood pumping through the brain. I had tears in my eyes. I had asked doctors before but I was let to believe that any physical activity would only harm me because of the leftover swelling. I was so happy , it made me feel like moving a step forward. He also told me that to keep my stress level lower I should think about quitting work and to start enjoying my kids and especially my new baby. I forgot to mention, that he is the healthiest little boy, he is very smart. He is almost two now and speaks two languages. The doctors weren't sure about the outcome because of all the medications I had to take during the pregnancy. Yet, he is just fine.

Now was my time to start walking. I was afraid because of the swelling. I walked a little here and there and it was good. I have enjoyed every step. I also quit my job on July1, 2005 I stayed home with the other kids for a while after they were born and I thought may be it would help. I do not regret it one bit. I am thankful that we are able to do it not just financially. I do miss the people, I have to admit.

I enjoy every day now. My headaches only come out in extreme stress situations or weather changes from warm to cold. I have learned to deal with stress situations. I only have to take a Tylenol every once in a while. Also after a year of being on the medication I weaned myself off. After walking and then starting to run again I felt better every day. I am up to seven to 10 miles a day of running and again, enjoy every step of it. It makes it nice to hear people say I look like I am floating instead of running. I also know it is because of the grace of God.

Every once in a while I get the Déjà vu but I have learned to reason with my own thoughts so that it does not affect me anymore. The memory issue can be saddening sometimes. Sometimes I can't remember where I put my keys, but I always try to remember that I did this before I got sick. Same with remembering names of people. I was bad at that before the encephalitis too. I am trying to do memory games, and things that improve that skill in the hope that I might be 100% one day again. Yet, I can live with what I have left. Sometimes I joke about having given my baby boy pieces of my brain and that is why he is so smart already. :-) I am so thankful for him, he is my sunshine. People have asked me what I was thinking about having another baby when my other kids are almost out of the house. Well, I know why, he gives me joy and fills my heart with happiness and gives me reason to look forward to every day.

It felt good telling someone in details about this ordeal. It's kind of weird how we learn things. thanks for giving me the opportunity,

Tanja
Tennessee, U.S.A.

Posted: January 31, 2007

[ADULTS]	[CHILDREN]	[HELP]	[SUBMIT STORY]	[EMAIL]	[HOME]