Adult survivors of childhood E

curlycanuck
  • By curlycanuck · October 5, 2008 at 10:33 pm · 23 replies
  • In Life after encephalitis
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When I was 4 months old my family and I were going to a Christmas concert when I began to seize. They rushed me to the hospital. The hospital records describe my condition and then say "measles ?". I spent several weeks in hospital. My mom has said they didn't know whether I would live or die. They were told I was going to be mentally retarded and that the illness had left scar tissue on my brain. I had asked my mom about this a few years ago using the term encephalitis, She said I didn't have encephalitis before going off on one of her little martyr syndrome episodes so I didn't get to question her fully. There are no other health records from this time as they get destroyed after so many years. However scar tissue on the brain after an illness seems to be the "definition" of encephalitis. I believe they might never had used that terminology with her being country doctors. They might have just told her I had a sickness in my brain. I also believe the doctors were correct in labeling measles as the cause because I have never had the measles at any other time despite not being vaccinated(I wasn't allowed to be vacinated because I was too sick as a child) and being exposed to measles numerous times.

I had numerous seizures as a child and would go into status eppileptus( one seizure after another) I failed grade 1. This may have been because I was allowed to take kindergarten as I was too sick and there was just so much information to take in. It could have also been because I was on phenobarbitol and it caused hyperactivity which my family has described me as having. The seizures stopped when I was 7.

I have always had a problem with memory and relied on my niece for descriptions of what went on in our family. If I didn't write something in my journal I would not remember it later. For school I wouldn't memorize things I knew i couldn't so I figured out ways to get the answer by working it out logically from the basics. I have always had a problem with word recall and had to mime out what I wanted. Those darn thingamajigs. I relied on tools to help me out such as dictionaries and thesaurasuses. I didn't know how weird I was, til a friend confessed to me "when I first met you, I told my mother you were so weird". I don't have facial recogniton so I cann't "read" people. I've heard communication is 20% what we say and 80% nonverbal. I don't catch on when people are being falsely nice. Although I grew up in a small town (mostly) where everybody knows everybody, I didn't know a soul. To this day people have to greet me first then I try to figure out who they are by the conversation. Change your hair, lose weight I won't recognize you even in your normal location. I have very little guile. I call it "terminal honesty". It did mean that I was bullied a lot as a kid and that people take advantage of me as an adult. For the most part I cannot play the social games. I have always cried for no apparent reason. It is so embarassing. In university I went to talk to a prof about a low grade he gave me. I took the paper in and we discussed where I lost marks. Every circle he made he responded I didn't lose marks for that. I had the right conclusion and gave all the info he wanted. I was winning the arguement for a better mark but even still I was crying. I just wanted to leave so accepted only a slightly better mark. I also well up whenever I hear a siren. For the most part I cann't watch comedies because they are mostly meanspirited and I become so stressed I have to leave or cover my ears and eyes like people do in horror films. I have "brain off days". Typically I can score about 155 on intelligence tests. Then on other days I cannot do simple tasks that I have done before. In uni again, on a midterm I only got a 27, the class average was 29. I don't get below class average even on a hard test. When I pulled it out to study for finals, I was able to get 95 in only 45 minutes. The course wasn't cumulative nor had any part been reveiwed.

I am realizing that this is getting very long. When I made a short intro in welcome curlycanuck it focused me that the changes all occured when my brain matured. The greatest changes occured when I hit my mid to late twenties when your higher executive functions come on line. I would like to hear from other adult survivors of childhood E if they recognized the same changes.

Thanks.

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23 replies   

MichelleN

Welcome curlycanuk. I'm sorry you are here because of E, but glad you don't have the seizures.

I have very little ability to recognize people unless I see them in the normal place and they are people I see all the time.

I can't watch much because I cry very easily. Many things that are supposed comedies I don't think are funny I just cry. Sirens make me cry and I live by a hospital.

I do many things by logic. I'm always surprised what I can do by logic, but I seem to do ok. I know the neigborhood because I have specific land marks. If they change I'm lost, but things like house colour doesn't change too often.

I'm an adult survivor, but I got E as an adult. I hope you can find the info you are interested.

Michelle

curlycanuck

Did I mention I get long winded.LOL Up until my midtwenties I could edit and get to the point without explaining everything. I wanted to start a discusion about how symptoms change with brain changes. We are such crybabies I live by a hospital too and a police station. so I must cry twice as much ha ha.

My seizures did come back in my midtwenties. I also started getting "cold spots", although they are hot sometimes it is when they are cold that they bother me. I also became very sound sensitive. I started having fatigue. It felt like I was working constantly. My brain off days increased. I started dropping things. I have only just realized i drop things because my senses are screwed up. I think I have a grip but I don't so things just slide out of my hands. I have never dropped heavy things just the light stuff like a glass or a knife.

Lately and I am now 43, I cann't tell where sounds are coming from and there is no signifigant hearing loss. I am seeing shadows from my periferal vision and when I turn my head there is nothing there. This was really weird but I was feeling like everything was wet. I was sitting in my chair and I thought my god I am sweating my new chair is going to stink before realizing that the part I was just touching couldn't have gotten soaked with sweat. For a month I felt like everything was damp. I was telling my gp about these things. "sounds like nerves" and he sent me back to the neuro. I see him on wednesday.

I am not menapausal yet but I am nearing it and I am thinking that these changes are occuring because of prechanges that my body is making. I realized that all the previous changes happened at landmark ages, entering school, puberty, and midtwenties(higher executive functions) I am wondering if other people went through this.

la_glitch

i had HSE at the end of my first year of primary school (i must have been five). apparantly i was complaining of having a headache and flu-like symptoms and then, in the evening, i wound up lying on the sofa in a catatonic state, just staring into space with a smile on my face (according to my brother). i couldn't move my left side and i got rushed into hospital, where a consultant figured out what it was pretty quickly (and i'm pretty lucky for that). also, the inside of my mouth was covered in sores.

i still remember being rushed through the hospital that night, and other parts of my stay, although i remember very little of the year afterwards. otherwise, i had the odd fit, although only one was induced by nothing other than bad news, and a few years later i started suffering from very bad migraine headaches until my mid-teens.

mostly, what i seem to have, are issues with my left side going funny. i've always had a little bit of a problem, but in my late twenties they seem to have been becoming more frequent and stronger. i've always thought my mental processes are a bit off the wall as well, but i find that difficult to quantify. especially when i've got oter circumstances that could contribute (like, when i was in my late teens i was a fairly heavy cannabis smoker, which probably didn't do me any good mentally).

also, recently, i've discovered that i appear to have a low thyroid function through secondary hypothyroidism, which could be related to issues with my hypothalamus (my pituatry, apparantly, is fine), which could be an artefact of e. that, in turn, doesn't help my left side, as it gets more aggravated the more tired i get. also, in my twenties i've been through a fair bit of stress which might have amplified certain symtoms (such as tiredness and depression) as well, as (i might as well be open about it) i've also undergone gender reassignment (whether or not e contributed to that..... i wouldn't like to say. i don't think so, in all honesty, because there were signs pre-e, but it plays on your mind i guess).

so, apart from the left side issues, which i'm managing by not wearing myself out (or taking a stick with me when i feel tired and i'm going on a walk), i think i'm fairly lucky with respect to e-residuals. although, considering it's been worse over the last couple of years, it does bother me how it's going to progress as i get older.

MichelleN

You probably aren't anywhere near as long winded as I am. I have a joke about wanting to staple my mouth shut so I can not constantly be talking.

For me having come so close to death then living in assisted living I always wonder who in my house the ambulence is coming for so that is a big part of why I cry probably. I would like the crying to go away because people always want to know why I just start to cry and if I'm ok. They don't understand that' it's the sirens.

I have to be very careful with dropping things especially since I have liquids and food by my computer. I have to be careful not to fall because I can't always tell where my feet are. I don't realize there is a problem until I drop something or come really close to falling.

I can usually tell wet or dry, but the other day I didn't realize I was sweating. That could be because I can't tell hot or cold.

I have what I call false vision and false movement. I know they're not real because I don't think a trash can can slide across the floor by itself the instantly be back where it was when I look straight at it. It's confusing, but I just try to remember it happens and things might not be real.

Michelle

Ingridrg

>> I cann't tell where sounds are coming from and there is no signifigant hearing loss. I am seeing shadows from my periferal vision and when I turn my head there is nothing there. <<

These are some of my residuals. When they happen I don't mention them to anyone because I know they'll think I'm 'nuts'.

Ingrid

MichelleN
  • By MichelleN
  • Reply 144093 · In reply to 144053 by Ingridrg
  • October 6, 2008 at 9:52 am
  • Report post

That's funny Ingrid. When people tell me I'm nuts I ask them which one.

I have hearing so good I hear things before animals do so people think that they just can't hear it. Many times that's reality though.

Michelle

Mac33

Re seeing shadows - I was on tramadol years ago and one of the most strange side effects was seeing "shadow people" all around. The dose I'm on now is I think a bit more than then, but no shadow people. Possibly then I was on a bit too much and now I'm going out of my way to use as little as possible, I don't know if that would cause it.

curlycanuck

I am actually hoping it is not the AED (antiepileptic drug). I have finally got my weight coming down. I gain weight everytime I switch meds so I do not want another switch. I used to be very athletic.

I am seeing the neuro on wednesday

sinceage1

I can relate to curlycanuck. I had similar situation when it came time to take childhood vaccinations. MMR vaccine caused allergic reaction of measles E meningitis status epilepticus. I had reading comprehension and memory problems in school. Worse of was socailly isolated by peers as my socialization became hard to accomplish.
At age 12-13, I was seizure-free for 5 years, possibly being off all medication and considered controlled. However, my depression of isolation made me think I wasn't worthy to be controlled, and my parents didn't make sure I accomplished my gradual decrease in meds. I had a new seizure just as my body was changing during growth in teenage years.
Now they dxed me with Asperger's Syndrome, form of autism. Like some theories say, such results might me caused by MMR vaccine. My ownly blessed thing was someone staying so close to me throughout pregnacy until birth when realizing I became twin to my sister. Now she's doctor as child/school psychologist for children with special needs just as I was. Supposedly our parents say she said she wanted to be even before we went into kindergarten. It's so heart-warming to know someone you love knows what you're going through. <3

Linda42

Hi Everyone,
I had measles encephalitis when I was 7 years old. I was sick for weeks, with a fever that kept coming back, and finally I started having seizures, mostly on the left side of my face. I was put on heavy doses of Dilantin and phenobarbitol, which I took until I was 11 years old. I had regular EEG's, which showed a lesion on the right side of my brain. By the time I was 11, the lesion had healed, and I was taken off the meds and have not had a seizure since. During those 4 years I was on meds, I was physically slow and drowsy all the time, and although I perked up some after getting off the meds, I would say that the slowness and drowsiness has been a problem for me my whole life (I am 54 now). I have also felt depressed and confused inside for as long as I can remember - I feel like I don't have a firm identity, I don't know what I want, and I have major problems feeling motivated about anything. I always scored very well on IQ tests and other standardized tests, but I'm slow to catch on to new information, and I feel kind of slow and stupid.
I'm wondering if some of my struggles are related to my childhood bout of encephalitis. I've never talked to other adults who survived childhood encephalitis - are there other adults who were once pronounced "cured" of encephalitis, but who still feel like they may be struggling with residual effects?

Take care,
Linda42

bandtaihtaih

I had mumps encephalitis when I was 3, I think. I was very ill and not expected to live. I did recover completely... or so everyone thought, except for nerve deafness in my right ear. I don't think anyone observed any obvious problems other than behavioral, and no one thought it had anything to do with brain damage. They just thought I was spoiled... and that could have been the truth, haha.
Anyway, I started having trouble with depression about the age of 12. I've struggled with it since then. I have always been easy to get exhausted and cannot tolerate stress. If I do get too tired or stressed I go into deep depression or high anxiety problems, or any number of psychiatric symptoms.
My difficulties have been disabling the last 10 yrs. I find it hard because I haven't been able to handle the stress of working consistently.
Anyway, I noticed that someone with the screen name 'la glitch' mentioned something about the left side after encephalitis. I have always wanted to know if other people have experienced that as well. I have always been more sensitive on my left side. The right side feels like the half of my body I don't use... but it's not numb and I DO use it.... It is such a strange feeling. And like 'la glitch' mentioned, it gets more noticeable when I'm stressed or tired. Sometimes it tingles as if I've rubbed mentholatum on it.... kind of burning yet kind of cold.
Anyway, I was just wondering if anyone else has any other experiences like this and I am also interested to talk to people who had encephalitis at a young age. It is difficult to know about before and after when you get it so young.
I wonder if age and stress could be making me have more symptoms now than I did in younger years.
Ok, thanks to all of you for sharing your experiences.

Linda42

Hi Bandtaihtaih,
I had measles encephalitis when I was 7, with seizures that lasted until I was 11. I have also struggled with depression, anxiety and a low tolerance for stress since my teen years (I'm 54 now). I have a relatively high IQ, but I'm slow to learn new things and slow to get things done, and I've been that way ever since I can remember. People noticed my slowness, but no one ever seemed to connect it to the encephalitis. I'm wondering if it is connected, though. I would like to get a job, but I dread the inevitable break-in period that always happens for me - I don't pick up on or send out the proper social signals, and I'm a slow learner at first, so I get a negative reaction from a lot of people, which is very stressful for me. I've always been a "low energy" person who needs naps and lots of quiet time alone. I've more or less accepted that I'm just an introvert, but I've also always had the feeling that my brain is sluggish and too easily overwhelmed. If there is an actual physical reason for my struggles, it would sure help my self-esteem to know about it - I've always felt like an unmotivated underachiever.
Take care, and good luck to you,

Linda

MichelleN
  • By MichelleN
  • Reply 182495 · In reply to 182375 by Linda42
  • November 28, 2008 at 2:16 pm
  • Report post

I'm not a long term survivor yet, but I always feel like I'm a low energy person.

My damage was on the left side and for a little while I became left handed, but now I'm back to right like I used to be.

I am told I high IQ until people ask me the easy questions. Sometimes I get it right they think, but I was asked who was the President. I said Bush, but I thought it was the father.

I have trouble learning new things if it's not a complete schedule and little stress. I want to work, but I have trouble volunteering.

Something that irritates me is that people who can have jobs don't want to, but I want one and can't. I would be excited to be able to have a job. I do have hope that some day I will be able to even if it's not what I would like.

Michelle

bandtaihtaih

Thanks Linda and Michelle. It amazes me how many of the same problems we all have. Somehow it helps to know I'm not the only one. It sure seems like I am alone with my struggles most of the time. Other people around me don't seem to have as much difficulty getting through a day.... and they do many, many things compared to me.

N. Jean

MichelleN
  • By MichelleN
  • Reply 182758 · In reply to 182744 by bandtaihtaih
  • November 29, 2008 at 7:51 am
  • Report post

Sometimes I feel alone. I am lucky I have my support group, but so many don't.

I do many things compaired to some, but what the "normal" people I have to focus completely on what I do or nothing gets done. I keep hearing about how people are always bored and I tell them that I would like to find out what that is.

When I get depressed and there is no one from my support group I can feel comfortable going to I put Moon Shadow the song on. I try to remember that should be how I view things. It is hard, but I tell myself that if I didn't have depression sometimes I wouldn't know what happiness is. I don't usually believe that, but sometimes it distracts me enough until I can deal with the depression. I hope you are able to find something to help with yours.

If you feel alone post something here if it helps. We aren't around you physically, but we do care what goes on for eachother. I may not remember names, but I do think about the personalities here because I know we care for eachother.

Michelle

rockstargrl

This is a great topic, my daughter got E when she was 14 months, she is 5 now and I always wonder what the future holds. I never know what she thinks and feels because she is now non-verbal. She had storke like symptoms to her right side and is now a lefty. SHe still does not use her right side a lot. I don't know if she still has the numbing feeling, she used to bite her right hand all the time. Thanks for all of your stories!

one_lil_red_hen

Although there is much that the folks have posted here that is... I can't really think of the right word to describe it, but I can identify with. Especially the motivation and the ups and downs in mental function and the fatigue.

With all of us here experiencing the plethora of symptoms, I just can't understand why it has been so difficult to find someone in the medical community who hasn't had a hard time understanding this... phenomenon without trying to put it into a psychological etiology category.

I am hopeful that the virologist at the University will be able to validate my difficulties in physical medical terms.

My shrink wrapper has already given me what I'd call a pardon on the previous diagnosises I've received in the psychological realm. He has told me that he believes my difficulties are the result of my brain injury.

Thank you all for sharing your experiences, you have all explained your problems so simply, but there is nothing simple about it.

~hen

one_lil_red_hen

I just wanted to add, it doesn't mean that there are not mental health issues that arise out of these illnesses, but I do not believe that it is the crux of the problems.

~hen

bandtaihtaih

Rockstargrl,
What you mentioned about your daughter sounds like what I was told happened to me. I lost mobility on one side, (don't know which) lost the ability to speak, or respond, and was blind. With time I regained everything, but about a year later it was discovered I had nerve deafness in one ear.
I am also left handed, but was told I was already left handed before I had E. For years I always thought the difference I felt between my left and right sides was due to being deaf in the right ear.... creating a sense of darkness or lack of sensitivity on that side... and also I thought it might have something to do with the fact that I'm left handed. I was probably in my late 20's before I even realized other people didn't feel a difference in left and right sides. I've never had a doctor say that it could be a result of E. I HAVE been told that it is probably a result of my anxiety or a psychosomatic issue. I have wanted to see a neurologist to see if I can get more answers, but it's expensive and I don't know what it would really prove or help to know why I have the problems I do.
I'm wondering, does your daughter seem frustrated that she is not able to express herself verbally? If so, have you found helpful ways for her to vent/express? I CAN speak and I find that trying to express what is pent up inside me is extremely frustrating.
Anyway, I wish you the best with your daughter. I know it must be a challenge to deal with the difficulties as a parent. Thanks for your post.

N. Jean

bandtaihtaih

Hen,
Thanks to you too... for posting your thoughts. I have been reading on the sight for a couple of years and I appreciate your input on the issues at hand and the struggles we all face.

N. Jean

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