Encephalitis Survivors?

Had Encephalitis twice; one in 2003 and again in 2006.....My entire brain has been affected as well as my daily life....I am now on disablity from work which will run out early part of next year....then on SSI....I am only 44; which is young in my eyes......

Just wondering if anyone out there as difficulty on a daily basis who you are, where you are, unable to find things in your own home, no driving, can't go up, down stairs, etc.

I am on 6 diff. meds which make me tired and not sure if they are helping since I have uncontrolled seizures that started after the second bout of E.

Report post

5 replies. Join the discussion

Well, I go much further back. I had mumps that developed into encephalitis when I was two. About 40 yrs later, I developed Diabetes insipidus ( big time thirst w no quenching it), extreme fatigue and poorer memory. Since that diagnosis in 2002, they've discovered I actually have an extremely rare disease called Erdheim-Chester Disease (I'm #179 in the last 77 yrs). You can look up Erdheim on the web, 'cause it would take a lot of space here. I do have a discussion in "How this Disease has Changed my life"-Walter327. At any rate, being a large presence in my legs and behind my eyes, I have difficulty walking due to pain and balance. Since I am a danger where falling is concerned, I can't work. Dizzy spells, confusion and various vision problems?, forget driving. I will come downstairs to work on my on-line business and become completely confused and lost as to what I was doing and/or how to do it. I have to read instructions slowly, step by step, and still don't accomplish anything. I'm on various painkillers, Clonazepam-Restless Leg Syn., Wellbutrin-Depression, Androgel-Testosterone replacement and Interferon for the growths involved in Erdheim's.
The question among this jumble of words and letters is," Could there be a link between the Encephalitis?", 38 yrs prior, and the Erdheim's, now. The specialists say no. But, if you read up on it, they do NOT know the cause of this disease. Hm!
So, you are not alone, and please feel free to call on me in here. I'm feverishly working on getting this business started, as I don't want my wife to shoulder the burden of bills on top of worrying about me. But, I do check-in as often as I can. I also know how important it is to have someone "get" what you're going through.
So, I reckon we'll be talkin'. :-)

Report post

In January of 2006 I was diagnosed with Meningitis and Herpes Zoster Encephalitis. Before I was diagnosed I was sent home from the ER twice. They said it was just a migrain. Then they called in an Infectious Disease Dr and he ordered a lumbar puncture and diagnosed me. I developed encephalitis from an untreated case of the shingles.

The first year I thought I was supposed to get better and get back to my life as usual... no one told me any different. After over a month out of work I went back because I didn't want to lose my job. I tried to hide my inability, hoping that I was getting better. After a year of trying and working and pushing myself, I felt worse than when I got out of the hospital. When I went back to the Dr and told her, she told me that I might no ever get any better. I also have cronic pain. She explained it was post herpatic neuralgia along with residuals from E and the pain could last indefinately.

The first year all of my relationships were different. I thought everyone else had changed - and they were making me mad more than usual. It took a year to realize that I was the problem and everyone else was trying to deal with this new, over-emotional me. I'm really surprised my marriage has lasted!

I am on Welbutrin and it has really helped. I take provigil to help me focus. I was diagnosed ADD and placed on adderall, but I don't take it... I tried and it doesn't help. I am on neurontin for nerve pain - it helps a lot, too. I've been diagnosed with Diabetes and I take glipizide for that. Not to mention the supplements.

I am always dizzy, fatigued, easily startled,... I can't read anymore because I can't stay focused or remember what I'm reading. I forget where I park... but at least I'm still driving. I can't stand face to face conversations - I love online conversations!

So yes - I'm in there with you.

You might be interested in checking out http://www.eglobal.ning.com It is a small community of survivors - about 25 - but there are more of us!


Report post

My daughter had uncontrolled seizures every 7 days or so this summer. After months, she was finally diagnosed with Hashimoto Encephalitis. It's extremely rare, only about 35 cases worldwide. It's curable with steriod treatment and she takes kepra for the seizure activity, although since being on the steriods she hasn't had anymore seizures. Her TPO antibodies were unmeasurable, that was one of the clues. I'm sorry for your suffering. Good luck.

Report post

Hi Walter: Hope this day finds you better than yesterday. I have realized that I only can take it one day at a time. I cannot even remember what I wrote when I entered this site but I totally understand where you are coming from. I miss work so very much it saddens me daily. I slept for 14 hours yesterday and I'm still tired. I still have to figure out how to make this type bigger so I can read it. I feel so bad for my husband who has been there from the beginning. The thought that I am on disability at the age of 44 is very disturbing but I try to accept the fact that I have no choice.

Thank you for replying and I will "speak" to you soon.


Report post

Hi! Encephalitis is an awful illness that people cannot 'see' that you have. I run an email support group as does Wendy Station. Here are our two websites: http://health.groups.yahoo.com/group/encephgroup/ and http://groups.msn.com/EncephalitisGlobal/. We are a non-profit corporation. Daniel Surridge in Massachussets, also a survivor, has been collecting stories of survivors (and non-survivors) and those submitted by their caregivers: http://www.1halloween.net/encephalitis/index.html/

There is also a great organization in Great Britain which was started by parents of encephalitis victims. It has grown a lot and they have lots of professionals doing a lot of research. Visit: www.encephalitis.info.

Please visit my group and Wendy's and read the stories on Daniel's website. You will know you're not alone.

HSE 12/95 (I was 45 years old)

Report post

This journal entry is closed to replies. We close all journal entries after 90 days.

If there's something you'd like to say, here are some things you can do:

Things you can do