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I'm very curious in knowing if anyone else had E as a young child and is now much older? What lasting effects have resulted? I'm soon to be 49. I had E when I was only 5. I have complex partial seizures and anxiety which is now increasing since hormones are now changing.
Measles Asperger's syndrome Meningitis Anxiety Mumps Menopause Tegretol Stress PANDAS Confusion Stroke Fever Seizures Autism Pain Memory Encephalitis Lamictal Depression Paralysis Lorazepam
I had Encephalitis was I was 10 years old--August of '78. I was bit by a mosquito. I am now 41 years old. That took place on the west side of Cleveland. I still live on the west side of Cleveland. I have complex partial seizures. I have taken so many Rx's--it's not funny. I still can not stop the seizures. I drove when I was 16. I was finally diagnosed with Epilespy when I was in my early 20's. Got married to a wonderful husband and have 2 great kids. After the 2nd kid, the dr. told me not to drive!! That was 13 years ago. I want to drive so bad. Have a great day!!
Lisa
hi lisamarie. You are the only one that I know of who was that young when they had Encephalitis and is now older. I feel just a bit "out of the loop" here, but at the same time not...know what I mean? I feel that everyone else is still really still recovering from their E...but then in reality, I guess we are all still recovering in our own way. I always felt that seizures were my main problem, now I realize from reading on this forum that the Encephalitis "caused" the seizures in the first place. It has really changed my life. And I can't believe that all this happened to me when I was only 5 years old! And my seizures were't even detected until I was 30! It's just good to know that there is someone else here that has a similar situation.
But , I'm sorry to hear you don't have your drivers license! I had my taken for only 3 months and I know how I felt! What kind of meds are you taking currently?
I now take Lamictal 400 mg, Tegretol XR 200 mg, Generic Tegretol XR 800 mg and Vimpat 350 mg a day. I also take Lorazepam 1 mg after I have a seizure. My seizure is Petite. They only last up to 30-45 seconds. I do not have an aura, so I don't when the seizure is coming. When my daughter was born--1996-I had 5 grand mal seizures. I had one in church. The pastor shewed (?) everyone out of church. The church's nurse called 911 and the ambulance came over. So I was taken to a hospital. I stayed there for a few hours and then released. We called the doctor on Monday and was taken off that drug. I don't remember what drug I was on back then. We live in the city we graduated from high school--husband, too. There is a mall and the church--we got married in that one--May 1991. Have a great day!!
Lisa
Hi LadyJane-
I match both criteria: had 'e.' when I was 3 or 4, and I'm 51 now. I think that I've read of some others among the many members here that are in our category, but I can't recall them.
Mark
I had measles when I was 4 months old. I noticed when I first joined this group and was writing my intro that my after effects changed with each stage of brain development. School age, puberty, mid to late twenties and now I am nearing menapause as I am 44. I have always had problems with word recall as well as some memory problems. I have an auditory processing disorder and initiation problems. I drop things. Hyperacussis. At times my brain drops off the face of the earth and I can not comprehend simple things I have done before (following a recipe, simple math) and I can lose postural control when trying to think. I can have delayed comprehension. I have problems with facial recognition. I have about 100 different types of migraines. I get that nonrecoverable fatigue. I have clonic tonic and absense seizures. For the past year I don't always know where sounds are coming from and "everything feels wet". I was getting flashes/shadows from the side of my vision and when I turned my head nothing was there but that hasn't come back. Just got "the years before menopause can do strange things" freom my neuro.
Hi Curly. Nice to hear from you. Sounds like you have had quite a time over the years also. And heading into pre-menopause sounds like you're getting the same thing I get from my neurologist! Don't ya just love it?????? NOT! I wish I could tell you that things will improve, but I'm not much farther ahead of you, being 49...just about to turn the big 50 in about 6 weeks! And I get so frustrated with doctors when they say that to me. So FRUSTRATED I could scream...but I usually cry instead. And of course they'll tell you that's all part of it too, the tears...being emotional!! I guess its not that we don't already know that we go through these changes, i just get tired of doctors just looking at your age and just "assuming"..oh yeh...hmmmm...menopause.....and nodding their heads.....I think after that point in our lives women, they just put EVERYTHING down to menpause..(I'm wondering if this should have been a spearate discussion)...anyways...I'm done.
LadyJane & Curly-
If I were to see doctors regarding my 'e.' residuals, they had better come up with something better than that (menopause). LOL
Mark
I came down with encephalitis after a mild case of chicken pox when I was 4 years old and am now 51. After I recovered (from a brief period of paralysis) there was never any talk of possible after effects. I think everyone was so grateful that I survived that no one really thought beyond that. The doctor just told my mother that there might be things I will try to do as I get older and find difficult. He actually gave the example of trying to play tennis and finding I couldn't raise my arm in a certain way. He was never more specific than that. I've had migraines since I've been 10 years old and just now discovered that there may be a link between that and the encephalitis. I've also always been very klutzy, falling for no apparent reason, misjudging objects and bumping into things, very bad spatial awareness, difficulty remembering names and faces and other assorted gaps. However, I'm not sure what may be due to the encephalitis and what may just be how I was made. I'm a high achiever, did well in school, earned a master's degree, and am physically active. As I get closer to menopause my headaches are getting worse and I'm getting klutzier, but that may just be the normal process and have nothing to do with the "e". It's difficult to judge when I have nothing to compare to. Getting encephalitis at such a young age doesn't allow me to know what I was like before.
I had mumps at age 3 and developed encephalitis during that time. The doctors didn't expect i would survive. I had partial paralysis on one side, vision loss, and was unable to speak. I recovered fully except for nerve deafness in the right ear. At least it seemed that I made a complete recovery. I've always had behavioral difficulties and impulsive tendencies. I've had trouble with depression for as long as I can remember and extreme sensitivity to so many things. I have had more difficulties in the last ten years, especially with anxiety. I have many of the same symptoms that survivors of E describe. I have a difference in left/right side of my body in that the left side seems to be more sensitive. When I become extremely stressed the left side tingles and has minor muscle spasms at times. I cannot really identify whether or not my problems can be attributed to E or not since I have other childhood traumas that could also have influenced most of my difficulties.
I have not had a doctor support the idea that residuals from encephalitis could be a cause for my continuous struggle to function in daily life. I've never seen a neurologist or had any tests to find a definite cause. I've been told that it doesn't matter what caused what I'm experiencing because the treatment is the same.
I have not responded well to any drugs for depression. I take a small dose of an anti anxiety drug every evening and in the last couple of years I have not been able to sleep without a hypnotic.
The thing that has helped me the most is going to therapy once every week or two.
I caught E when I was six yrs. old. To me it's been a love/hate relationship. Sometimes, now I find myself crying because its like having a stroke. Half my body is normal in movement but the other half isn't and it gets to me at times but all an all I'm surviving. Some school wanted me for insperational speaking. I completed high school and college and I also had my own little businesses while I was going through both. So, let me offer you these words of hope, sometimes it might get next to you at times, but at other times you might say I'm not giving up, I hate to lose.
I was diagnosed with E when I was nine (9) due to complications of mumps and am now forty-nine (49). The doctor advised my family I did not suffer any residual brain damage, my father would disagree with that one sometimes, LOL, with the exception of neural damage. I too suffer memory, concentration, emotional, and a whole host of other issues. I have not visited a physician for the problems but have decided to seek advice due the increase in severity of problems. It was wonderful to locate a support group. Alas, I finally feel like I am not alone and not "crazy"
I didn't have encephalitis as a child, but I did suffer mild brain damage due to illness. I had strep throat and a very high fever from my immune deficiency at age 11 or 12. Had very wild hallucinations while I was ill. For a year afterwards, I couldn't comprehend conversations very well. It was like the person talking to me might as well have been speaking Greek or talking underwater. I'm still slow at comprehending and responding to verbal conversations.
I tried to research the effect of high fevers on the brain and came up empty-handed. Just a bunch of pediatricians assuring parents that their childrens' high fevers weren't a serious medical problem. Yeah, right. I know differently. Finally thought to look up heat stroke, and found all kinds of correlations to what I went through! Have also found some correlations to PANDAs.
Because of the immune system problems, I have had meningitis several times since 2003, with more damage. It puts a whole new spin on things to experience this as an adult. I can see the changes and the difference in the pre- and post- me. It doesn't just seem like "the way things are" or that I was born "inadequate". I understand and can see the effects of the childhood damage much better now, having experienced this as an adult.
Just had a neuro-psych consult and he confirmed much of what I already knew about the damage incurred. Funny how the neurological issues are acknowledged now by doctors after years of hearing I just needed more therapy, I just needed to be less anxious and I would be able to communicate fine, my aches and pains and seized-up muscles were caused by stress and anxiety. . . I could go on and on. I argued and argued that the anxiety occurred because I couldn't communicate or understand conversations well, not vice versa, and was ignored!
I've also heard the menopause line - since the age of 35! The first time I heard that line, I was in the emergency room with a fever and the doctor said I didn't have a fever (in spite of their thermometer reading of almost 101 degrees F), I was just having menopausal hot flashes at the age of 35.
Now Mark, if any doctor ever tells me that my fever is caused by prostate problems, I'll fire them immediately! LOL :)
Cathy
Hi Lady Jane,
I had viral E. as an infant and was hospitilized at that time for 6 weeks. I have always felt that having this illness has inhibited me in some ways from childhood up until now. I do have anxiety issues, memory issues and a general disconnect as if I cannot connect the dots alot of times with general life issues whether its following a conversation, making sense of written material etc. I'm only just beginning to study and look into the possible connection between E. and the symptoms I have experianced since I was a child. What type of symptoms do you have exactly?
Hi Bonti. I have a seizure disorder that wasn't actually diagnosed until I was 30 years old, although after speaking with a neurologist, I was having small seizure type episodes my whole life...deja view type feelings that would come over me, slight confusion and feel a bit nauseous, but would pass so quickly, I always just passed it off as nothing. I had two grand mal seizures one at age 30 and one at about age 35 when the neurologist tried to take me off the meds. So i'm on the meds for life. Now I'm on Tegretol and Topomax. In the past couple of years, I have had a lot of break through seizures...confusion, hard to focus, just generally feeling so so strange, I need to just be left alone, don't want to talk to anyone. Then it passes, and I'm fine. Then there is the anxiety, the heart pounding, the worrying constantly, not wanting to go out, its awful....yeh, I can relate to you! I have to take Lorazapan to help me sleep at night...nights are the worse. Any time you wanna talk I'm just a click away..lol
Hello everyone. I feel your pain also. At age 1 during childhood vaccinations, I had allergic reaction to MMR vaccine, causing encephalitis meningitis and tonic-clonic seizure. Like many, I also have memory and social isolation problems ever since. Classmates were too young to understand seizures, and memory resulted in special ed class for comprehension. Rarely on honor roll, college-entrance PSAT exam did not make acceptance into universities. Only went up to AAS degree through begging in college which my program would have only given me certificate. No employers will hire these days someone without at least Bachelors degree.
Occasionally I'd get what's called cognitive neuropsych and behavioral testing as therapy to learn where I'm at as far as knowledge, intelligence, memory, and emotional well-being. It tells where one has weakened and needs help and/or improvement in.
In my 20s I heard about dialectical behavioral therapy.(DBT) I thought I'd try it out instead of CBT over and over again. After about 2 weeks, they took me out of the group and suggested I be one-on-one with psychologist weekly. Eventually, this psychologist dx'ed me with Asperger's Syndrome, high-functioning autism. I was devastated. After reading more about it, it made sense to me. Defined as "lack of social reprocity" was obvious in grade school, and sadly at home from my parents also.
Without permission to drive despite 2 year seizure control, and public transit refusing me on their service because they don't understand symptoms and challenges with mental illness, (ignoring to learn and accept) getting to distant places is impossible. Bus company charged me legally 2 years ago for having these hidden conditions public otherwise look at as intentional wrongdoing.
I've been unemployed for 5 years now with SSI. Of all this, any suggestions would be greatly, greatly, appreciated. God Bless best wishes to all.
bandtaihtaih I am curious, do you know how long it took you to regain your speech? My daughter has been Post E for 5 years now and hasn't regained must speech.
Hi there :)
Another E survivor here. I got HSE when I was about 5 (i think it was HSE anyway. one of these days i'm going to try and get hold of my notes from back then). From what I know, and what I've been told, I got left-side paralysis, that unresponsive stare-into-space thing, and apparantly I was very close to slipping into a coma. Only some doctor actually thankfully spotted what it was and stared treating me straight away with the relevant drugs (saving my life, no doubt).
I had a few seizures a couple of years after (one emotionally caused, and two caused by physical trauma) and I was also medicated for blinding migraines from the age of about 8 until my mid-teens.
Now I'm 32, and when I get tired I can still feel the E residual in my left-side. It ranges from a feeling of that side of my body not being bothered to do anything, to weird electrical aches that upset me so much I want to chop my arm off! I've even taken to walking with a stick when it's bad, just to take the pressure off and because holding up my lethargic left side tires my right side out! Also, even though I don't know if this is likely to be related to E or not (and, even if there isn't physical damage that is causing it, i figure there may be psychological basis from just growing up with E residuals), I'm currently seeking help for 'mood issues'. Sounds ominous, doesn't it :) I just feel very up and down, and pretty much ~weird~ all the time. Nobody else seems to notice it, but people rarely notice the fact that my left-side growls at me either, so I figure I shouldn't listen to them :)
xx
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