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| Christine |
My name is Christine and I had encephalitis in August of 2001. I was 28 yrs old. I will try to piece it together as best I can since some of it is so choppy in my head. It all started on August 4th (Saturday) with a mild headache as I was driving back from a friend's baby shower two and a half hours away. I just thought it was all the driving from that day, took two Advil and was fine. That night I had been upset over some family issues and when I woke up the next morning (Sunday, August 5th) with another headache I thought it was from the night before. I went on about my day, maybe had an extra cup of coffee to help me "wake up", but nothing that unusual.
On Monday, August 6th, I woke up in the morning and it felt like my tongue was two sizes too big for my mouth...it was just barely noticeable and only to me (didn't tell anyone because how nuts would I have sounded and I was able to talk so no one would notice) and of course my headache was still there. Now this was unusual because I do not get headaches, especially for days and then the speech thing? I was still able to write it all off as just me being stressed out or maybe me working out too hard at the gym...still nothing I was too worried over...didn't want to panic anyone over nothing, I thought. That night (still Monday) I asked my husband to pick up some Excedrin migraine from the store because a friend had told me I might be having a migraine (never mind that I am not a headache-getter!). He did and wow! I could be an advertisement for that stuff because it was the only thing that even took the edge off the pain so I could sleep that night. I can see the commercial now, "strong enough even for encephalitis!"
By Tuesday morning, I woke up and everything was bad. My headache was so horrible and the strange thing was that every time I bent over I thought my head would burst it would hurt so badly. Lying down was ok, just anytime my head went down like I was picking something up, it was horrible. I couldn't even kiss my son in his crib. I had to bend at the knees to do everything, so my head wouldn't be upside down. My husband went to work (looking back this was soooo stupid, but I'm stubborn and STILL didn't want to alarm people) and I slept from 9am to 12pm, woke up, somehow made the kids lunch, then went back to sleep from 1 to 4pm. I even threw up that day, and let me tell you, I didn't even throw up when I was pregnant with my two kids! I positively do not ever get sick to my stomach! Then I knew something was up. My speech was worse but I could still think clearly (for some reason I never really lost my cognitive function, well, maybe I lost some of it...I just couldn't get my thoughts out). My
husband came home from work around 6pm and took me to the hospital. They gave me a ct scan, mentioned something about my sinuses being the only thing they saw on it, gave me a migraine shot and a benedryl and sent me home (this took 4 hours of course). I got home and now that I was relieved I wasn't having a stroke (my worst fear), I made myself some coffee, thinking I just needed caffeine.
Wednesday I woke up and of course things were worse. I couldn't say any words longer than one syllable or my mouth tripped over them completely and I had
to talk deliberately and slow so my words will even come out. I can hardly walk as the day progresses and I notice my left side is getting weaker.
I insist my husband go to work and that it's all "in my head" (ha! little did I know!), and that I WILL get better because I will make myself get
better.... see, stubborn. I am popping Excedrin migraine like they are candy and all I do is pretty much sleep and gain strength to make my long trips
out to the kitchen (our room is right next to the kitchen, but the walk seemed to be two miles). I had figured out that if I slept for 3 hours I could
then be up for about 30 minutes. That was all my body could take. By 4pm that day my mom (over the phone...she's 3 1/2 hrs away) tells me I'd better
call my doctor. I call, barely able to speak and the nurse tells me she can't hear anything wrong w/my voice (needles to say I have switched Dr's
since!) but that if it will make me feel better to go to the hospital just in case. My husband came home from work and now I am barely able to walk. He was in shock and insisted on calling an ambulance. I started crying and screaming (ok, so maybe I wasn't thinking as clearly as I thought I was) and make him drive me...still not wanting to alarm people!!!
We got to the hospital and the same doctor is there. He told me it's probably MS and that I should go home and try to see a neuro. Within the week! Within
about 10 minutes one of my eyes starts moving on it's own...not in conjunction with the other eye. I can still see but I have to keep a hand over
one of my eyes at all times to focus. This happens off and on for hours. This happens just as we were being told to leave the hospital again. My husband,
who is now really realizing how bad off I am, told the ER doctor that unless he can put it in writing that I am not having a stroke (still what we
were fearing), we're not going anywhere. The ER doctor decided to call a neurologist. And when he gets there, he spends forever w/me going over everything.
I told him I'd had a bizarre sore throat for 13 days prior to my headaches starting (nothing else, just a sore throat...no fever, no stuffy nose).
I told him I'd traveled to the Keys recently and had gotten 3 mosquito bites there that had not healed, etc. I told him every little thing I could
think of. He decides to do a lumbar puncture and I get an MRI. It's now about 1 am and he tells me I have encephalitis he thinks, but that he doesn't
know what kind. I get put in the ICU and they give me some sort of something for the pain. They also hooked me up to solumedrol (sp?), Acyclovir,
and an antibiotic (can't remember the name right now). I am completely relieved because he's not saying the word stroke. Over the next few days I
get much better. I never did black out or have a seizure, the worst things got for me was my lack of control over my eye. I think things would have
probably gotten much worse and fast, if the neurologist had not have been called in.
The doctors told me I'd probably be in the hosp. for 2-3 weeks but on August 12th they let me out (my daughter-started kindergarten the next day and I had to be out for that, still stubborn!). I was shocked when I got home and didn't
feel 100%. I didn't believe anyone when they said how seriously ill I'd been. You know, in a way I still don't. Maybe it's my way to cope. At one point when they first realized what I had, the doctor told my husband to bring in my living will because he said these things get bad fast. Maybe it was better I didn't realize how bad off I was.
When I first got back I was so tired. I could maybe be up for 2 hours, then I'd have to nap. My speech would slur if I tried to do too much and my
Balance and coordination was horrible. I didn't feel like myself at all. I felt like I was trying to live someone else's life. I had to consciously think out everything, even things I'd never had to think to do...like fix my hair.
Everything took so much longer because of this and was so exhausting.
Now, 6 months out, I am about to go to the Mayo clinic for more tests. I am a million times better than I was but I am still not feeling like me. I sound like Balki (from Perfect Strangers: anyone remember that?) when I talk sometimes because I get my sayings all mixed up. I have a hard time finding words and I am horrible at small talk (used to be so good!). I get so tired,
I call it hitting a wall. I have to immediately sleep...for usually 2-3 hrs before I can even function again. Even with all this I am soooooo lucky. I don't know how I escaped this as well as I did, esp. since I didn't take this seriously for so long. Maybe it's because I was too stubborn to realize how bad off I was. See, I always told my mom when I was growing up that being stubborn had its advantages! : )
I had never had the flu or really been sick before this. What a thing to live though. Telling my story was easy...it's telling about how I feel now that's hard. I feel guilt for even complaining about the residuals I'm left with, when so many people would be happy to be in my shoes.
They still have never found out why I got it. All the tests for anything mosquito-borne came back negative. The doctor says I will probably never know how. He just says it was a viral type and the last time I was there he mentioned meningio encephalitis...so I am still trying to put all the pieces together. Just finally writing this has been helpful. I've been meaning to do it for so long.
Thanks for listening.
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Christine
Florida, U.S.A.
Posted: Feb. 18, 2002 |
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