Can any long term side-affects appear after suffering from viral encephalitis?

Hi, my name is Carol, I was on coma at age 13 for 78 hours. Seizures followed for a year in al half.. now I am 43. But I have a long ath with many symptoms, some of my friends call me hypocondriac... I cry all the time, and feel like I have no control. I have a lot of anxiety, headaches, depression, among others neurological troubles. Lately I have developed sudden tremors on my neck, head and face... due to extreme stress at work, I have a family and of course it doesn't help :) I  love life, I am outgoing. I am Christian loving everything I see.... But the late tremors are making me feel like a useless person. I haven't work in thee weeks because of the twiching and uncontrolable movements of my face...

In 2006 my dad (50 Yrs) was diagnosed with Viral encephalitis. My mom and I woke up to my dad laying in the middle of living room unconsious. When he was rushed to the hospital, they had no clue what was going on.

2 days before he was out of town. He told his neice he wasn't feeling well, so he went to guest house to sleep. The next morning he called my brother to come and pick him up. He was 45 minutes out of the city. My dad is a talkative person. Never a dull moment, either joking, lecturing, or going to the "when i was your age'' stories. Only ont he ride home, he said nothing.

The day we found him on the floor, My dad slipped into a coma that same day. He was literally a vegtable on the bed. For 4 days we sat at his bedside hoping he would wake up, or move or anything. Doctors had my mom sign papers to 'pull the plug'. It was the hardest thing we ever had to do. On the 4th evening, the doctors turned off his oxygen machine. His pulse started to slow, everything was droppipng. But then, he had a seizure. They turned everything back on.

The next morning we got a call, that dad was awake. He was awake alright, but had no clue who anyone was, where he was, or who he was at times. But then things from his past came to him. He would remember things from his childhood and re-enact them. He had hallucinations, he spoke to people who were not there. He was calling my son, by my brothers name. The nurse was his wife. He owned a plane and it was parked behind walmart. And his boat was parked in the middle of the road. (yes it's funny now that we talk about it :) )

Within 2 weeks, my dad's memory came back, the hallucinations went away and he came home!

The doctors had told us that 7 ppl in our city were diagnosed with VE within 2 months. 3 ppl died. 2 were left in a vegitative state, 1 has 70% of his body functions back and the last one made a full recovery...My dad. They said he was a miracle. He walked out of the hospital on his own, returned to work as a long haul truck driver and never looked back.

But to this day, he doesn't remember the days in the hospital. He still blanks out every now and then with remembering. He get's clumsy at times, but it passes.

I'm glad he's here and I'm glad I came across this post. I never knew what the long term effects were, but it all makes sense now. Thanks for everyone sharing their stories. Even though they may not the happiest, it's still a grateful story, that you are able to tell it to others.

 

I would highly recommend a neurologist. Just my humble opinion. The longer you let it go the worse it f****g gets. The mental fog is bad enough but the muscle spasms are just inhumane. Sooner you start getting seen for it the sooner you can get treatment. Not to discourage you but if took about 5 years befpre my neurologist (course I live in one of those republican red states. . .bast*rd) would even give me a script for a low dose of vicodin.

Hi I have had all of the above when I was 23, and just given birth to my little girl I was struck down with illness I went to the doctor and he really did nothing I then ended up in hospital with encephaltitis, after I got home I was told nothing I had a hard time thinking and puttung words together, I could not remember much about my sickness.

What is concerning me now is that I still have problems after all these years, I am now 45 and still have trouble pronoucing words, spelling etc. I still get quiet embaressed. and it is not from lack of trying very frustrating to live like this.

Learn more about the impact of encephalitis from the people it has touched.  Visit the forum at Encephalitis Global where survivors, caregivers and loved ones share information and support, every day.

I am 47 and recovering from encephilitis which I got 7 months ago. I was in a coma and on life support, It is so scarey not knowing what the long term effects will be.  All i know is that I feel tired all the time, find it tiring to concentrate on things and my short term memory is not fantastic.  I have struggled with anxiety and post traumatic stress.  I have been improving but feel I've come to a bit of a plateau and worry maybe I won't improve much more from here.  I don't feel able to work and still have to do small tasks and rest a lot. I feel I need a lot of support so as not to get depressed about this situation as I was a very independent and active person before this happened.  Any suggestions or support is welcome.

Hello Jody...

 

Hi,

I just read your story about qhat happened to you.
Your story actually gives me more hope for my sister to recover from encephalitis. She got that desease when she was 6 and now she is 22. What type of medication or theraphy that you have been doing to make you get well from this kind of desease? Everytime I see my sister, I really hope she can be normal one day. I dont care how old she is when she's back to normal, but i just want her to feel this world is actually much more beautiful if she's normal. Thanks for your time :)

hallo this is the first time that i have tried to find out about long term effects your letter i can relate to i am 63 and had it when i was 17 i was living in s. africa at the time drugs had just come on the market .i had to walk and talk again.but i am getting very worried about ageing as you.

My name is Jon, I had the unfortunate luck of having viral encephylitis at age 30 approx 14 months ago. Since that time I have experience many of the side affects you've all described. I was always on the ball and sharp as a tack, professionally and so one. I have frequent balance issues especially when turning or coming down the stair too fast. It's almost as if I have to wait for my brain to complete the turn or finish coming down the stairs. I've also been struggling with the daily feeling of fogginess, intermitten memory loss, panic attacks and anxiety. It's all very troubling, I feel as though its a daily struggle just to maintain some sort of normalcy among my professional and personal life. My doctor did warn my spouse while I was in a coma that I will never be the same again but I never imagined he meant it'd be like this. My Neurologist said I had a long recovery ahead of me. I guess this is it maybe. Seems we're all in agreement that this normal. 

Wow, i am shocked at how many of you have similiar symptoms. My name is Richard Butler. i contracted Viral encephalitis when I was 20. That was 1974 and my sister was married the day before. I had numerous seizures and had very little memory of the events. The hospital could not diagnose the problem(parents thought I was on drugs,ha!) and was finally sent to UNC and spent at least a month there. They put me on Dialatin(anti seizure med) for 8 years. This in itself causes memory and learning issues. And i went back to college a year after getting V.E. i basically flunked out of architecture school and transferred to Another school to get an architectural degree.  I have memory issues; for example i could watch a movie one day and if someone asked me to tell them about it, i could not tell them the name of the movie or much about it. If not under any pressure i could recall eventually but not quickly. I have also developed somewhat of a social anxiety in group settings and now take meds for that. I have a very hard time concentrating when reading and it takes several times to read something and understand it. I also can't concentrate when someone is talking to me, say at a party. Story telling,etc is almost impossible for me. I can tell very short sentences,but i generally look like an id**t when I try to tell a story,etc.  i am now 57 years old, got married when i was 41 and am an architect. I understand very much what you are all going through. You look normal on the outside but the internal struggles hang on! 

Hi.  I had Viral encephalitis when I was 7mos old in 1967.  I had such a high fever that I was put on ice packs.  Later in life I developed epilepsy due to scar tissue that the dr. figured was from a high fever at a younger age.  I had surgery that corrected the epilepsy in 82.   In 1989, I ended up with a sinus infection that lasted for a cpl of wks & then ended up with a new syptom that I recently started wondering if it was a side effect of the viral encephalitis.  I feel like Im constantly in a dream state.  I understand and am aware that I am awake but I just cant shake this sort of numbness I feel.   My memory is shot -especially short term.       Anyone else?

That is a good way to describe it, I've always referred to it as a detached fogginess, but dream like state is a good way to describe it. Sometimes I feel like my brain is actually floating outside my head. When I try to explain these feelings people think I'm crazy. What stinks is that none of these symptoms are visible, but you physically feel them. What does one do with these feelings? Is this our journey now?

I was the lucky guy to get this back in 1998 in Alberta Canada, now this many years later I still have memory problems, the muscle cramps and such, but here is a kicker, around 2002 I was diagnosed with sarcoidosis, so just a shot in the dark, how many of you have also been diagnosed with sarcoid after surviving VE. I have made a full life, awesome family, great job, generally happy go lucky. This last year tho I have had the long term memory loss seem to become more of a problem, and even a bit of short term memory loss. Now I know alot of you have tried everything for relief, what have you tried that seems to work best for you? what takes away the dream like feeling?

 

I have over the years tho adapted to the "c**p", I have used humor for when people ask me about my childhood and teenage years. Being I remember very little of it, I often reply " I dont remember it but I heard I had a great time"

 

Are any of you from Canada?

I am so glad I found this thread. My father (currently in his early 60s) was diagnosed with very severe viral encephalitis when he was 19. He went into a coma, had a period of amnesia and was very sick for a very long time and expected to die. This was during the 1950s in northeastern India, so it was shocking that he survived.

He has always been a very strange person, with memory problems, lapses in attention and odd mood swings and serious impulse control/anger management problems. He claims that when he was a young adult, he attempted suicide several times. I was wondering if any of you think that this could possibly be one of the residual effects of his long-ago illness?