ENCEPHALITIS CASES

Encephalitis Cases

Michele

Hello, my name is Michele. I live in Florida, USA. I am 39, and my symptoms began 11/03/03. I was at work and a sudden terribly intense headache hit. I made it home figuring the symptoms would be gone within a day, day and a half, and I could take medicine I already had on hand for migraines to stop the symptoms. I had experienced migraines 2-3 times in the past. After several days of worsening symptoms despite the medication, I was admitted to the hospital for tests. Over the next 5 days they did MRI, carotid doppler, CAT scan, MRA, blood tests, etc. They said I was having a series of small strokes. By this time, I had developed a drooping left side of the face, and severe shaking in my hands and legs. They released me to return to work. I had been receiving oral and IV pain medication, so by the time I returned home, the pain was back.

A month later they did an arteriogram and decided I hadn't had strokes and they didn't know what was causing the continuing symptoms, which now included severe shaking most of the time, the continued facial drooping, severe headache, inability to speak clearly, lost thoughts and tripping over my words, memory loss, and blurry vision in my left eye. I was out of work on disability by this time. After a few months and many more types of tests, I was released by my neurologist to see a psychologist, because as he said, it was all in my head. My insurance then required that I go through this step as well, because it had been recommended. Then I spent 4 months being analyzed, pronounced as being depressed (hey, really???!!!), and that I had PTSD (post traumatic stress disorder).

This doctor, still my doctor today, listened to my history and asked me if anyone had ever mentioned viral encephalitis. He diagnosed it and took me off of all prior medications. The very first visit. After 9 months of being sick.

For the past year he has been giving me a shot in the supraorbital nerve on the left side (eyebrow region). It really hurts for about a minute; then miracles occur, every time. No more headache, or vomiting, or shaking, or facial drooping! This lasts for 2-3 weeks each time, then I get another shot. I still get what I call "bleed-thru" headaches from time to time, which is like a sudden sharp (bad) headache that lasts up to an hour, but they usually only happen a time or two each period, and I often go a week to 10 days with no headaches at all. I no longer need to nap every day, just some days(especially 2-3 days right after the shot). I can now do the housework, laundry, cook meals. I have to pace it carefully throughout the day, and what would take others a 1/2 hour to do may take me an hour and a half due to my stamina levels, but it is a far cry from the first year. I do still have an indentation on my left cheek that looks like my cheek is slightly sucked in, but that eye which will go nearly closed most of the time is open all of the way after the shot. If I get tired, the shaking will start, the tripping over words, and the "blanks" when I'm speaking. Short-term memory remains an issue, but seems to be slowly improving. I still have pain medication for the headaches, but a one-month's prescription lasts me 2 and1/2 to 3 months. I take them during the last few days of each period as the shot is wearing off and the symptoms are all returning.

I gained 63 pounds during the first year of my illness. I have now dropped 27 lbs., and for the past two months have been able to do walking and swimming for exercise, so I am feeling stronger physically. I describe how I feel now as "waking up", as it seems like a fog is lifting, and I am becoming more aware and more able to process thoughts, having more energy.

In addition to these health trials, other's responses to my situation have been an issue. My mother and siblings felt all along that I was manifesting symptoms, and should just get over it and go back to work. I know this because they said so. Then once the name encephalitis came about, they were more supportive, felt bad about how they'd acted, etc. This has only lasted a few months, though, and once again they are showing their support by continually asking me when I'm going to go back to work and lose the rest of the weight...why aren't I doing more. They do not seem to comprehend the difficulties with memory, focus, or even the shaking, struggle to control the headaches, eye drooping, word tripping etc., even though they can see these things. My husband married me 5 months into this ordeal (we were already engaged), and was so supportive the first several months. Then that started to seep away too, and he has since told me repeatedly that he would not have married me if he had known the illness would last this long. According to him, the house is never clean enough, I don't do things fast enough, he's tired of me forgetting things, etc. Then he'll be supportive again for a few days...I never know. And last, but not least, my job eventually ended the disability and let me go. I no longer have insurance, either. I can't afford it as I am not working, and every month is a struggle to pay the bills. My doctor sees me on a reduced cash basis.

So this is my story. Reading others' stories has really helped me, and I hope mine can help someone else. I would like to have contact with others, in the hopes of sharing ideas or things that have helped them or me in all areas...the symptoms of the illness, financial, family, etc. Thank you for the opportunity to get this out.

Michele
Florida, U.S.A.

Posted: September 18, 2007

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