What symptoms did you experience with your encephalitis? Submit Your Comment

Comment from: sissy, 75 or over Male (Caregiver) Published: February 04

February 2019 he was walking every day, and his encephalitis started with tilting of his head one side or the other. Started shuffling his feet, slowly progressing, and started walking with a walking stick. He had lots of headaches, double vision and no depth perception. I got him a stand up walker, it was no good, got wheelchair, no good. By August I had to bring him to bed and to bathroom. By the end of August he had almost no voice. On 3rd September I called the ambulance, after 4 days blood pressure dropped to 60 over 40. He was admitted to the ICU and got tracheal PEG (percutaneous endoscopic gastrostomy) food line. Now he is at home the same way as he left, in rehabilitation; getting worse it seems to me.

Comment from: thankful, 55-64 Female (Patient) Published: August 01

Living in Wichita, Kansas at the age of 6, I remember sleeping long periods of time in a porch chair during summer, developing a fever, disorientation, having a lack of appetite, and feeling very weak. Three to 5 days into it, my mother decided to take me to the hospital where they said I could have died from encephalitis. After reading the different diagnoses, I realize how and where I developed herpes simplex 1.

Comment from: Mj, 45-54 Female (Patient) Published: June 26

I was 4 years old in 1971 in Mississippi. My father told me that he came home and I was acting strangely, not responding, disoriented, found to have fever, and apparently just took off running toward the highway from our house until I became unresponsive and fell. I was rushed to the hospital and spent 2 months there for treatment of encephalitis, with the first month being in ICU. I remember waking up to the sound of alarms going off in the unit. The nurses and doctors were so excited and had me walking to different people. I didn’t understand at the time, but apparently I had been out for weeks and the doctors thought that I may have some deficits if I recovered.

Comment from: Katykay, 25-34 Female (Patient) Published: August 11

In 1981 I was pregnant and had severe headaches, seizures that started at my feet and rolled up through my head, and I could not walk or see. I lived in Vienna, Austria. They put me in a mental ward. My husband got me out and to California and I was diagnosed with encephalitis. Twenty years later when more was known of this illness I found a psychiatrist who understood and helped me significantly. Light medication helps keep me stable. A spouse willing to help me was critical. I suffer from memory loss, speech problems, coordination problems, and sleep problems. Eighty percent of people die from this. It is a serious and dangerous illness.

Comment from: A servivor, 13-18 Male (Caregiver) Published: May 14

My child was 14 years old out of nowhere he started having seizures that last 54 days he was on life support and wasn’t expected to live he lost all his memory speech how to eat walk even me, nothing seemed to stop his seizures until he was given a vns stimulator and finally woke up, they said he’d never be the same he’s slowly regaing memory and walking eating but is still having seizures, my son is a walking miracle and I know with my help he will fully recover, doctors are amazed of the lil boy that’s survived this horrible infection!

Comment from: mimi, 45-54 Female (Caregiver) Published: December 07

My grandmother died in Ireland in 1925. My mother was able to sail back before she died and always said she died from encephalitis.

Comment from: imateacher, 65-74 Female Published: April 23

I presented with encephalitis in 1979. I apparently became immediately confused and totally unable to care for myself. Friends found me after my family called and asked them to check on me due confusing phone calls. I did not get medical help for two to three months into the illness due my father’s inability to understand/refusal to understand. He felt all "psychiatric" issues could be dealt with by vitamins, and my presentation was psychiatric in nature. Two years into the illness I was finally able to again seek employment and a somewhat full life. I recall that it was not easy and nothing like my previous life of a smart corporate manager with friends and high expectations of myself.

Comment from: Vicki, 45-54 Female (Patient) Published: January 31

After going to my primary care physician and 2 different emergency rooms over a couple of week period, my 13 year old son walked all around the house looking for me and finally called my parents after finding my cell phone left at home when I always had it with me. After an extended period of time I could not be located so an APB was put out for me. I was found on the side of the road out of gas in the city next to us. I had returned from Hollywood and Las Vegas and had some bug bites that had turned into the Encephalitis virus. I was hospitalized for over a month period and finally was discharged to return home, with very little memory, some seizures, constant headache and other symptoms that caused me to lose my business along with a lot of other things but at least I still have my life for all of my children and grandchildren and my husband. Yes, the symptoms are a constant thing but I will make it past all of this because I am too strong not to.


Brain Food Pictures: What to Eat to Boost Focus See Slideshow
Comment from: masters in French, 55-64 Female Published: May 30

I was planning on buying a house in a different city in Ohio. I really got lost and ended up in Michigan. I was gone so long that a friend called the police. I was found and taken by police until family and friends came all the way from Ohio to Michigan. They took me to the OSU hospital and I threw a terrible "fit," which is not at all like me. I was taken by arm and given a shot and put in the psych ward. When it was all said and done, I was diagnosed with encephalitis.

Comment from: Never dreamed, 7-12 Male (Caregiver) Published: October 04

First signs were dizziness, severe headache, chest pain, flushed face and white ring around the mouth, then unconsciousness. The rest of the week was disorientation, confusion, hallucinations, and memory lapses, and the first symptoms continued also. Those were symptoms of my 8yr old son who developed encephalitis from mosquito bites (they first said west Nile virus).

Comment from: Kathy, 45-54 Female (Patient) Published: June 14

I had encephalitis in 2008. I got extremely sick with a sinus infection and ear infection. I didn't get better after 10 days on antibiotics. My daughter rushed me to the emergency room. I also had contracted viral meningitis during this time. I had a really BAD headache that would not go away . I was disoriented. I went into a coma for 4 days. During this time the CDC was called in and I was put on extremely strong antibiotics. I also had renal failure and wasn't expected to live. Eventually I was on the road to recovery. I did slur and did have memory loss. 3 years later I still get tired easy, I do not slur, and sometimes I forget things. I have no signs of kidney failure. I guess you could say I am the lucky one.

Comment from: sleepy, 45-54 Female (Patient) Published: May 31

With encephalitis, I had a high temperature; pain in throat, head and neck; I was very sleepy with flu-like symptoms and I had sinusitis with an ear infection.

Health Solutions From Our Sponsors