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

I had viral encephalitis when I was age 12 and went through much the same as all of you, I have multiply seizures and was induced into a coma to stop them. After that I had to relearn how to walk and talk and have little memory of event prior to infection. Some thing such as photos, videos, and conversation will bring back flashes of memories but still to this day at age 29 my memory is in and out about events that happen even now. Throughout my life I have had issues with catching everything around me, colds, strep throat, sinus infections, you name it I seem to catch it, although since the encephalitis I have only had 2 seizures. About 8 months ago I contracted a severe case of EBV (Epstein barr virus ) or more commonly known as Mono. I am still have problems with extreme fatigue and hearing and vision problems. I begin to wonder if it will ever end of if this is now my life? The mood swings, depression, sleeping, spots, being off balance, is this just all becoming a part of my life now? It has come to a point where I do not work anymore and doctors say hmmmmm...and your ok it will pass, and eat better foods, exercise....I am wondering what I should do? If there are many of us experiencing this why is there no research group to help? Are these symptoms from the EBV or from the viral encephalitis? someone help us.......

Well there sure are a lot of us encephalitis survivors. Thank you for all your stories. I'm 53 years old and a RN. I'm heading to the doctors tomorrow because my balance seems to be getting worse along with my memory.

I had encephalitis as an 8 year old and was in a coma for 1 week. I remember having the chicken pox with blisters everywhere including my mouth. The last thing I remember was sitting on my bed and the next thing the tape being pulled off of me when I woke up in the hospital.
I don't remember any problems when I was young but I realized in my 20's that things weren't alright. My memory for names was horrible (can be normal) but the biggest thing was that I would say something and I might use the wrong word or I just couldn't think of the word I wanted.
I would get so frustrated. Now 20 years later the verbal problems are really bad I have to substitute whole other descriptive words of what I would have said with the one word if I could think of it. The other "fun" I am having is trouble hearing people. I hear them talking sometimes I hear part of the sentence but at other times it just sounds like garble. It is actually starting to frighten me. I am getting easily distracted, and within the last year feeling unsteady like an inner ear problem but nothing spins. I just start to fall to one side. I also try to take out the door way instead of going around it. I've been diagnosed with visual migraines when I had problems in the past with the visual changes. But too many things are happening. I always believed I had residual problems from the encephalitis but my mom at 88 had alzheimers. So that worry's me too. As you all are I'm very intellegent did very well in nursing school. But now I just don't talk as much because I can't finish a sentence most the time. At work forget trying to use medical jargon. It never comes out right. Help! Its so easy to become depressed when I feel that everyone thinks I'm a dippy women because of how I come accross. I'm hoping for a doctor that will go the extra mile. I wonder if the alzheimer medication would help with the problem with the thought process. I am afraid to bring it up.

Another strange change last several months is my typing. I'm a good typer but all of a sudden I find I'm adding in extra letters, reversing letters, etc. (I have retyped a good portion of this blog.

Has anyone found a doctor who really helped them yet? What about cognitive therapists? Any help heading in that direction?

Thanks for any imput.

You are right about the response from doctors when I mention the encephalitis. Hmmmm, the normal response. 8-| 8-|

Interesting...Everybody writing about their long term effects of encephalitis. I am 44 years old and a mother of two teens. When I was 7 years old I contracted encephalitis from chicken pox settling into my blood stream. I don't remember it, nor do I remember most of my 7th grade. My grandmother told me I was comatosed for quite some time and I remember having a dream (or was it real?) that I died, saw angels and then came back. But anyway...What I do know now is that DFS is saying I'm too emotional to parent my teens (is this REALLY my fault?) I have major crying spells...I have been diagnosed with BiPolar II but never had a manic episode. I have anxiety attacks, forget where I put things, have problems with organizing, and I feel very depressed (almost all the time). And I also heard experts say that epilepsy can also occur. I know I have serious problems with narcalepsy but never had a doctor diagnose me with that as sometimes I feel like I can just fall asleep standing up and feel very sleepy when driving behind the wheel of a car on long trips (which is why it scares me to drive alone). So I have to take frequent stops to rest in the car.
Is this my fault? No...I can't help what happened to me when I was 7. All I know is I have to take care of myself and try to get my medical professionals to help me the best that I can. I know what I'm capable of doing tho. That is my computer graphics and web development work.
I also know that I suffer from joint pain and I get migraines occasionally and stiff pain in the neck. I also know that I suffer from tone deafness (I can hear others fine but can't hear myself) and a mild speech impairment. (I'm from the midwest but folks say it sounds like I'm from New England...sometimes I talk like Elmer Fudd).
I have heard this can also be the result of Encephalitis. Sometimes I feel like it interferes with what could be a successful job interview. (If I were "normal" I would get the job.)
And I really don't feel like people understand me so therefore they're always out to get me. I feel swallowed up by my life as a whole ever since this has happened to me.
It makes my life feel so hard. It shouldn't be a struggle. I've talked to so many therapists that I feel I could open my own therapy office. GOD BLESS ALL OF YOU!

8-|

P.S. I also suffer from imbalance (You gotta watch out for that "lumpy" air!) and trichotillomania...Do you know what that is?
I wonder if it's from encephalitis? It's an OCD disorder...Pulling out the hair!
Anybody else got anything like that?

Take care all of you! At least we're not alone in this mess!

AGAIN...GOD BLESS ALL OF YOU!
~Karen

Hi all,

I suffered from encaphilitis when i was 4 years old. I got it from having chicken pox. I dont remeber much of it only snipets. My mum said i was in an incubator thingy and they had to wear white suits to come and see me!! very strange.
Before i went in i remember getting out of bed and falling on the floor - been a child i found it very amusing. Everytime i got up i would try to walk forwards but kept walkings sidewards ( a bit like being drunk ) My parents thought id just woken up a little too early, however i got worse. I remeber trying to catch a ballon but i reached out to the side. My co-ordination was all shot. Then i remember waking up in hospital and drawing stickmen with another young girl on the same ward. I was in hospital for a while and this boy kept picking on me...that all stopped when i threw up on him ha ha.
I cant remeber much else after that, i suppose i just got on with it. im now 28 and looking back i can relate a few medical problems which could be due to having encaphilitis. I had deprssion for a few months a year or so ago and suffer alot with headaches. I am really struggling at the moent with Migraines...i used to get them often, my medication helped with this but now im getting them weekly again.
The last one i had was really wierd as i felt the same as what i did when i started with the encaphilitis...it was a though my head was not connected with my body. I do often forget things - especially if im tired. i can ask myself 'what did i have for tea yesterday' and it takes me ages to remember but i can remember things that happened a few years back.
Its helped me alot when i read the stories on here as i dont feel such a ding bat now.

I'm 30 and had encephalitis when I was a year and a half old (1981). From what my parents told me I had a very high fever and they sat bedside with me while the doctors prepared them for the worst. Obviously I survided. I don't remember anything from it, but my parents said I was pretty lifeless afterwards for a few months.
I've always had trouble learning things I had no interest in. Keeping my thought process engaged has never been easy for me unless I really loved what was going on. My teachers always called me "a bright kids, but rushing into things and can't seem to focus."
Reading has been difficult for me as well. The best way I can explain it is, i think and read in pictures....from right to left. This obviously makes reading very difficult for me. Retention has always been hard as well.
I was aware of all of these things very early on and came up with lots of coping mechanisms. Graduated with good grades, went on to get a great career as a network engineer.
My entire life I've wondered if Encephalitis had any long term effects. If it changed my brain somehow. But I knew i couldn't change anything if it did. and I wasn't going to blame anything or anyone for any misfortune I came across. So I didn't focus on that and moved on.
During highschool I began to wonder if I may be ADD. Lots of people told me i probably was. My parents showed signs. My brother too. But none of us got checked out and we kept pushing forward.
Learning has never been easy. In fact its been very difficult. But that doesn't compare to how I feel socially. I'm naturally a very quiet person and keep to myself, but have a strong urge to break that and push myself out there. its hard for me to keep focused on a conversation. My brain runs wild and is thinking about 30 things at once. I've learned to control it somewhat when needed.
This past spring I decided to get checked out for ADD. I saw a few doctors and they all confirmed what I had thought all along. Its not ADHD. But just ADD. I'm not super hyper. I don't have bounds of energy I need to get out. But leave me with my thoughts and you'll lose me for a long time. This is good sometimes as I've found my ADD to be very helpful in my career and for my creativity. but it has gotten me in trouble.

Encephalitis may or may not have changed the course of my life. I won't know. Nobody will. I'm playing the cards I was delt and not holding anger or blame on anyone or anything. there was a time in my lift I was a very bitter person. but that bitterness was just poisoning myself. Dont spend too much time with the "what ifs".

I became very ill at the age of eight with Encephalitis/Mennangitis. I spent two weeks in the hospital and am told I was close to death. I remember being comfortable with the idea of death as I was in alot of pain. I am now forty-one and have struggled since that episode without being aware of why. I do not remember anything prior to the sickness and my memory after and up to now is hazy. I'm going to try and explain my symptoms and when they began occurring. The thing that stands out the most is being incredibly angry when I was a child and into my teens for reasons unknown. I have a history of headaches, pain in my back and neck, irritability, anxiety, and fatigue.I became sexually active at a very young age. As a teenager I was depressed. I drank alot and did drugs(most nights ended with me being incredibly intoxicated and screaming like a lunatic). I did, however, always maintain an above average GPR in highschool and college. My relationships usually ended in boredom. I always wanted children and didn't think I would ever want to stop having them (I have five). I had never stayed at a job for more than two years and went back to school several times for a different subject (Computers, Math, English, Psych, Nursing, and back to computers). I came very close to earning a degree in SoftWare Engineering, but the closer I got the more anxiety I suffered. I have never felt like I could accomplish anything. I have moved approximately twenty times but lived in the same home for most of my childhood. I love my children but find it difficult spending time with them. I get excited about a project - start it - and lose interest halfway in. I have a history of sinus infections starting in my twenties. I was Obsessive/Compusive about cleanliness but my energy level has dwindled to the point my home is filfthy. I have been labled lazy, hypochondriac, crazy... My family has a history of Alcoholism, Depression, Bipolar... and many of my problems have been attributed to those. I am currently experiencing extreme fatigue, pressure in my face and head aches due to a sinus infection, vision changes, hot flashes, night sweats, confusion, memory glitches, flea bite sensations in my lower arms and legs, light and sound sensitivity... A mirrage of bizarre symptoms - Am I losing my mind?

HI EVERYBODY
I had encephalitis over 12 years ago,i was really ill,now today at age 41 i suffer with terrible pain outbreaks all over my body sometimes i scream with pain every day is the same,i have had all tests done and they all came back negative doctors and consultants just did not believe me it has been a long struggle to get doctors to accept what i have at last i have got an answer my doctor called it neuropathic pain and is going to try some drugs out that are used to treat people who suffer from epilepisy as they also treat damaged nerves,it has took me many years just to get the condition reconised so don't despair there is always hope it is just going to take time to find the right drug.Keep on at your doctor because i am now in a wheel chair because nobody would listen to what i had to say,just because they can't see it doesn't mean it does not exist. Good luck to you all.EVA. :-(

Hello. I am 48 and had a bout of encephalitis in 1985 when I was 23. I was a single mother of two special needs children as well as being a university student at the time. I don't know how I contracted the disease, but stress and sleep deprivation are prime suspects in my weakened immune system.

Having read some of the experences posted by others, I now realize that I was very fortunate. I did spend many days in a great deal of pain in every part of my body; babbled when I tried to talk; had vision, fine motor, and large motor difficulties; lost my sense of feeling to the point that I was unaware of my bodily functions or hunger; had little sense of time, among other symptoms. I was fortunate because I never lost consciousness and was treated with a, then, experimental drug that I understand saved my life. Church members came to bless me. I do credit that as a factor in my recovery. My boyfriend gave me his walkman and his Beatles tapes, which I listened to over and over again. He also spooned soup into me and taught me to walk again. Once I was out of the hospital, he also taught me some yoga to help relieve the ongoing pain in my back from the spinal taps that were used in my diagnosis. I returned to classes 10 days after leaving the hospital, very shaky and exhausted, but alive. My fine motor problems caused me to withdraw from art classes. I still have trouble controlling my hands -- keyboarding is very slow for me -- I recently was requested to withdraw from an educational program I was otherwise excelling in because of that. I did however graduate from university when I was 29. By then I was remarried -- yes to my walking teacher -- and had a third child. The count is now 4.

Since having encephalitis I have experienced severe depression, blinding headaches, memory lapses, difficulty concentrating, and get tired very easily. If I am very active for a day or two, it takes me several days to recover. This often makes me feel painfully inadequate and odd, but no amount of effort on my part seems able to change my need for sleep. I achieve things in small bursts of energy, grateful that I am alive. It never occurred to me back in 1986 to seek any compensation or therapy. My neurologist was impressed with my progress in a follow up appointment and I just went on with my life.

Does anyone know if these symptoms can possibly be related to a disease I had 25 years ago?

I had viral encephalitis when I was 3, I am not 25. I do not remember anything about the illness, only what my parents and others have told me. Apparently, before a diagnosis, my mother's worry over my health was ignored by at least two doctors, until I lost the ability to walk. She says that I simply couldn't move from my bed and had to 'relearn' how to walk (read 'A leg to stand on' by Sachs which is very interesting on mind-body relationship) which took several months. A few weeks (or it could have been months) later, the doctors told her I would not survive at which point she removed me from hospital - not because she had anything against the medical profession but because she wanted me to die at home - and subsequently I got better.

The thing I find most frustrating is that I have no recollection of these events. There are just half memories which I have pieced together from other peoples stories, half of which seem contradictory and unbelievable. I don't want to upset my family by forcing them to remember this difficult period but I know so little about what I went through.

During the disease I developed anorexia (not nervosa). Upon convalescense I began eating very specific foods (only about three: peas, cheese and animal fat) which was a diet, obviously, high in fat. My aunt recalls this but not my mother (frustrating)! I was overweight during my teens and have had to work hard to develop - and I mean develop - a healthy eating practice. I do a lot of sport to compensate for a big appetite.

Perhaps as a consequence of the disease, although it also runs in the family, I was diagnosed with dyslexia when I was 11. I had it very severely. My dyselxia involved the atypical spelling difficulties, short term memory loss, poor spatial awareness and poor visual memory. To this day I am famous for my ability to 'get lost' in areas in which I should be very familiar. I am allright with a map - not good by any means - but left with my memory and appaulling sense of direction, I am inevitably lost.

Also, although I am quite social now, I found this element of adolescence very difficult and had few friends. I am pleased to say I have many now, however, and this is a big however - and embarrassing - I have never had a sexual relationship and find it difficult to trust people on a deep level.

It has been helpful to write about this, thanks.

Hi,

I had encephalitis when I was 9 yrs old. I am now 44. I had some lingering effects right after my diagnosis. Sensitivity to light, certain noises really bothered me and I was tired for SO long! I feel I have been healthy ever since but In Oct of this year I woke up one morning feeling a little dizzy and off key. Headaches and nausea would come and go then it turned into pins and needles that traveled all over my body, only lasting maybe a few minutes. Now it is muscle weekness sometimes and I feel I have trouble walking. I've been tested for MS and that came back negative. Does any one have any answers or the same symptoms becasue i feel really scared!

Susan

Hello everyone, I was so astonished to find that people who have had encephalitis suffer from the same things I do. I was diagnosed with encephalitis when I was 5. I lost my hearing, eye sight, kidney function and was in a coma for 2 weeks. I had to learn to walk and talk again. Six months after I was better my Dad was killed in a boat accident. I am 36 now and have gone through bouts of memory loss, short term memory, tremors, severe anxiety and severe depression. I have been on disability since 2001 as I cannot function the best in the public. I have been on every anti depressant and nerve pill known to man. I also have severe bouts with my stomach and retaining information. I feel so crippled. I have been through terrible mental and emotional abuse, but I have always felt like there was more to it. The depression is getting worse and I am finding it hard to cope with everyday life. I am now convinced that I wasn't just imagining all of this. Could someone tell me where I can get some help, please!!!! :'(

this is fantastic, i honestly thought i was going insane! All i have been wanting is too know that others are going through the same things as i am... Three months ago, after several weeks of being hospitalised with crippling migraines and severe numbing running through my body at time oh and lets not forget the hallucinations, i was diognosed with Encephillitis and Meningitis. but since being released i hav felt stupid not being able to remember things that happened just a moment ago, forgetting what a "fork" is called for example and having so many mood swing its tiring. My realationship is hanging on by a thread and i for the life of me cant see a light at the end of the tunnel, i cant live my life this angry and confused, no one understands because there is nothing physically wrong with me, would be easier to handle if it appeared as an injury to a limb or something rather than my cognitive developements!

I too had encephalitis at age two. In the past year I started having more severe neurological problems. I have had other health problems too. I was dianosed with Fibromyalgia in 1998 and now I wonder if this wasn't a misdiagnosis. I also was diagnosed with Follicular Lymphoma in 2008. I thought it was the cancer that caused my problems this past year. I just learned that this may be due to the encephalitis. I am seeing a neursurgeon this week as there is spinal fluid and compression, which the spinal fuid I was told was due to the drug they used to detect the encephalitis and they no longer use this now. I too have had years of loss of balance, and only recently memory problems. I have had a sharp mind most of my life. Although, when I was 4 to 5 years old learning how to write, my Dad forced me from left hand to right and I really struggled with this. In my later years, I would recall this and thought this to be similar to autism, but after reading this post, I find that other encephalitis incidences, that this may have been the reason? I will keep reading this blog and I find all medical issues to be of a large interest to me and there needs to be more scientific analysis done to find the answers to all of this. I think we have come to understand so much about our earth and the space we live in, but not enough has been done for the human body and it workings.

I have to say that it is such a releif that I am not alone. I thought I was going to go crazy because no one knows what I have been going through and sometimes I think they don't believe what is happening to me.
With that side...more than 30 years ago I had encephalitis. I was fortunate to have found a doctor who finally diagnosed it just before I died.
Seriously, I have never been sicker but I recovered and struggled through the memory loss, learning words again, and getting the disconnection relearn...the only way I can explain what my brain was doing is: If I had an envelope to seal I knew I had to lick it and seal it but I could not get my hands to bring the envelope to my mouth let alone figure out how to get my tougue to lick it...if that makes any sense...
Anyways...I recovered and have functioned fairly well until about 4 months ago when I start experiancing a flashing light in my left eye. It only lasted a few seconds...then one day at work the flashing last hours and my vision was not good in that eye...a co-worker took me to the hospital because everyone thought I was having a stroke. I was pretty scared but there was NO pain at all...which I found puzzling.
At the ER all the doctors and nurses kept asking me if I hit hit my head or had a head trauma recently. I said "no."
They ran all kinds of test MRI, CT scan, dopler test on my neck vains...nothing. Finally a doc came in and said I was having a neurologial migraine! I was like what I have no headache...
I was seen by a neurologist and when he saw my cat scan of the brain he said..."well they missed this but you frontal lobe of the brain is severely deminished...and there is a lot of scaring on the brain...have you ever had a traumatic brain injury? I then told him I had VE 30 years ago...WOW he said that is what was going on!!! You could have knocked me over with a feather!!!
Since the flashing lights had started, my speech has been a problem, lost for words you might say, I have temors in my hands, squeezing of my left eye with visual issues and numbness around my eye, speech problems forming words...like my tougue won't do what I want it to do to say the words, problems controlling my legs, stumbling and almost falling over, getting out of bed and feeling like my body is rubber and almost fall if not for laying back down...my motor skills are bad now...
I have been struggling at work but maybe fortunetely for me I am 62 and have decided I need to retire before I can't completely do my job...I am a Paralegal and deal with high profile legal cases...I really can't screw up...just this week I missed a court dateline...I have never done that in my intire career.
I have been seaching the net to see if I am the only one who has had these crazy things going on years after VE so here I am...I am in tears to just know I am not going crazy...
Bless you all for your posts...I was feeling so alone and misunderstood...like no one believing me.