Introduction - this site contributes to my anxiety :-(

• By IngridGuerci
• Posted June 21, 2009 at 9:47 am
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You've asked a lot of very good questions. This site is fairly new but we have had an email support group since 1999 and lots of the people here were 'newbies' like you.

I was one of the lucky ones who went to the ER and got admitted right away. At first the ER doc thought I had had a stroke but because of my age (45) and the fact that I wasn't slurring my words or weak on one side, called in a neurologist. My temperature was 105F. and stroke victims don't usually have a fever.

The neurologist had me have an MRI, EKG, EEG, a spinal tap and blood work; he had me put on an ice bed for two days until my temperature went down and, because he had seen another case of encephalitis, started me on acyclovir as well as on heavy duty antibioties.

I was out of work for three full months, we back for 3 half days for 3 months, 3 full days for 3 months and then back full time. It was very hard adjusting to being there and remembering not only the names of the people I worked with but figuring out what I did and how I did it.

Because nobody could actually 'see' what was wrong with me, everyone thought I was okay and back to normal. There was hardly any information on the internet back then (1995/96) about encephalitis. At first I would try to explain what happened to me but after a while I realized nobody really wanted to hear about it so I just pretended I knew what I was doing and if I made a mistake I'd just say, "Oops, must be getting older, ha ha." and everyone seemed to accept that.

I still work at the same law firm and I'm doing okay. I feel like one of the lucky ones here. I do have residuals such as a headache every day, ringing in my ears every day, forget lots of things every day, etc. but for the most part I am pretty much 'back to normal'.

I'm glad you'll be seeing a neurologist. Before you go, write a list of everything you would like to talk about so you don't forget what you want to say. Keep in touch with us here and ask as many questions as you have, even if you think it's ridiculous. This is a support group and we all know more about the residuals of encephalitis than 99% of the doctors out there; after all, we are the survivors.

Ingrid/Tarrytown, NY
HSE 12/95 (I was 45 years old)

"Of all the things I've lost, I miss my mind the most." -- Ozzy Osbourne

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• By muzzamo
• Posted June 21, 2009 at 10:01 am
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Thanks. You touched on my question about going back to work. Your graduated return was with 3 months at each step, whereas i'm looking at 2 weeks at each step. I dont think i'll have problems with names etc (I was always crap with names anyway so I think i'll stay around the same)

Figuring out what I did and how to do it I don't think i'll have major problems with - can see it taking a while to get used to but I should be ok.

This thing where my brain absolutely punishes me for pushing it too hard is going to be a major issue.

Were you active before it happened? Did you get back to that level of activity a year or two later?

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• By dannon
• Posted June 21, 2009 at 10:27 am
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Hello muzzamo, and welcome to the group here.

muzzamo, you fall in to the category of "to early to tell anything about anything"

Its unfortunate that this site scares you - but - this is the only place many of us can discuss the realities of our lives. I hope you are in well enough condition to understand that.

Now muzzamo, as someone who has had over ten years experience, living with a brain after bacterial encephalitis and meningitis, and, someone who has shared in the experiences of over a hundred other encephalitis survivors, -- I'm going to try and share some insight in to your questions.

I can't answer your questions directly to you -- only your medical team can because they know what's wrong with you. We here only know the little you have told us so far, and history has taught me most of the important details of your case are not known here.

Again muzzamo -- these statements I'm about to give are not meant to replace anything your doctors are telling you to do. They know you -- I don not know you! They are doctors and I am a legally demented person.

OK:
#1: You should be seen by a neurologist.
Most likely - one did see you - or was working with your doctors while you were ill.
Unless something your doctors feels needs immediate attention, you should be seen by a neurologist sometime within six months to have your first evaluation.
I have to assume, if you are on some sort of back to work program, a neurologist may have talked to someone on your medical team already. I do not know that - I just assume or shall we say "hope" that is the case.
How often you are seen by the neurologist depends on the neurologist. It could be every three months to once a year, to one time only. Its varies by the case.

#2: I would not be concerned about going back to work.
Here is why — Either you can, or you can;t work at this time. YOU and your CO-WORKERS will be the first to know the answer to that.
I'm a bit surprised you are heading back so early, but your medical team knows better than I do.
Plan on going back. Try to do it. It won't hurt you.
You may not even be able to make it to work the first day - or you may be able to work just fine.
The only way to know is to give it a try.
BUT - don't in any way feel defeated if you can't even get dressed correctly the day you go back to work. It is so very early in your return after encephalitis to expect very much. Your medical team must see that you are showing enough positive signs to give it a try.

#3: The anxiety issue is 100% between you and your doctor. We do not know the depth of your fears or the depth of how much those anxieties are limiting your function -- in fact - we don;t know if you even have anxiety or if its part of the fact you are so early out of the infection that your thinking is still affected.
Only you and your doctor can work that one out.
As for coming here - I have no answer.
But I will tell you that you are too early in recovery to tell anything about anything, so anything you read here shouldn't be taken as something that applies to you.
Think of encephalitis as a cut to your finger while slicing up some vegetables for a salad. That cut could be a nick that barely bleeds to a total amputation. That's what we have here at Global - people barely affected to people on life support (those people are represented by their caregivers).

#4: I'm not sure what you mean by "exercise"
For me, my first exercise was crawling off the bed to the floor. Then I worked up to crawling to the bathroom. Then I worked up to crawling all the way to the bathroom and actually making it there in time...
So if you are talking about going to the gym and doing aerobics, well, that's a different story.
Again - exercise is something you need to discuss with your doctors. YOU will be the first to know what you can and can't do. If you can do it — well — enjoy it!.

#5: Many people recover from encephalitis with no troubles at all.
Those are people who would have absolutely no reason to seek out a support group.
People who are happy with their purchases aren't found in the complaint line.
My personal observation/opinion is: Many people have had encephalitis and never even know about it.

For you - its way to early to even be thinking about long term problems.
You have to wait at least eight to twelve months to begin to get an idea that there may be problems that aren't going away.

#6: Now this is where your doctors, your medical team and I may butt heads. So realize I am now stating the opinions of an encephalitis survivor with permanent brain damage - and not the opinions or factual based assessments of a medical doctor.

At six weeks out, I think you should be resting.
That means, doing what you can, but when you feel like laying down - you go and lay down for as long as you need to - even if that means three days!.
I personally think you should be avoiding any form of mental stress - like worrying about questions #1 through #6
However - you may be in terrific shape and be ready to go back to work! - I don't know that.
You medical team doesn't really know that - but they think you are ready. You may be, you may not be.
Just know: Trying anything isn;t going to kill you -- well flying a jet if you aren;t ready to fly a jet could kill you.
But planning on going to work won't kill you.
Just know if you can't make it to work - or - you get there and can't function - then you have answered your question(s)
One thing many of us do know here - and - many of us learned it from real neurologists. Stress is the worst thing for a healing brain. So keep the stress down.
That may help you with your decision to take some calming pills.

My last word.
You are six to seven weeks out of your illness.
You wrote this posting.
You probably have no idea how large a positive sign that is that you made that posting. The fact you have made that posting at six to seven weeks out of your illness is huge muzzamo.
-dannon (meningoencephalitis-bacterial, pneumococcal '97/'98)

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• By dannon
• Posted June 21, 2009 at 10:28 am
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WOW I see a post from ingrid and muzzamo went up while I was writing my post - I am a slow writer...

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• By MichelleN
• Posted June 21, 2009 at 10:39 am
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I took awhile to get back to exercise. I needed to gain weight I had lost so much. As I gained weight I was able to do more. That has helped me be able to use my brain more as well.

I find that days I do more exercise I get better sleep as well. I have a trouble not pushing myself too much because then I get so I can't do anything. I've found ways my body tells me to stop and now I know to follow that.

I can't work, but I do try volunteering. It is difficult, but when I start to get overwhelmed I suddenly have to go to the bathroom. I sit there for a minute then when I don't feel so overwhelmed I go back out.

I have very few physical problems, but with names I have to try to find something to associate the name with. My best friend is Dorothy so I just associated her with Wizard of Oz. She's used to me asking how Toto is even though she doesn't have a dog.

Recognizing people is close to impossible if I don't see them very often, but I have learned to watch for facial expressions that tell me someone knows me.

I hope this site doesn't scare you too much and you are able to get some help from it.

Michelle

Michelle

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• By muzzamo
• Posted June 21, 2009 at 10:51 am
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Thanks.

A couple of things:

Firstly, I don't have a "medical team", i've been discharged from hospital and been given basically nothing. I'm in a waiting list to see a neurologist (public health system in Australia).

So when I ask for advice here its because I really don't know what to do. The going back to work thing is advice from my GP, but he has never dealt with encepahlitis before so i'm hesitant to go on his advice alone.

One thing that I didn't mention above is that I actually went on an overseas holiday (to Vietnam) 2 weeks after leaving hospital, because the doctors that I had dealt with in hospital told me I should be able to cope (in other words they didn't tell me it was a bad idea). This was plain wrong.

I had major anxiety problems and was suffered heat stress twice so came home only one week into this trip. I'm actually quite concerned that I may have seriously dented my recovery and set myself up for major problems because of the stress that this caused me - i've never had the severity of that stress before! I was also on benzos over there for anxiety (after having them for the first time in hospital) and that was giving me a mental rollercoaster. So I just hope that I havent set myself up for problems for life just because I went on a (extremely stressful) overseas trip for a week and had heat issues.

I am *definately* going to take on your advice about stress on a healing brain before making a decision about anti-anxiety meds - thank you greatly for pointing that out I was not aware of this.

Also thank you for pointing out that I shouldn't be worrying about this stuff only 6 weeks out. Maybe I should be going on the anti-anxiety Meds.

Dannon was your permanent brain damage something that was evident in hospital MRI's?

Does anyone know much about SSRI's (lexapro is the one I have been prescribed)

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• By muzzamo
• Posted June 21, 2009 at 10:56 am
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@MichelleN how long has it been since you were diagnosed?

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• By dannon
• Posted June 21, 2009 at 12:10 pm
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Hello muzzamo,
Well, we/I really can't tell you what to do - you obviously know that. It would be great if we could though!

Welcome to the club. That's the club of dealing with medical people who have never seen a case of encephalitis before one of us. If that's the case, then this site will be helpful to you.

Let me hit on one subject here that may help you understand why its a bit difficult to actually flat out answer some of the things you want to know.

There are two forms of being mentally messed up after encephalitis. Maybe I should break it down in to three?

The first form are the problems we have just after the encephalitis. This is just after the brain has been cooked under pressure and invaded by little creatures.
The problems at this phase can and sometimes (often) fade away as a year or two goes by. But you have to give it at least six to eight months before even wondering about them.
Then there is the stuff we call permanent. Permanent is the stuff we are still dealing with after one or two years.
Basically, if you got past it - it wasn't permanent.
So (and this isn't etched in stone anywhere)
1] You have that six to eight month period where the attack on the brain is still being dealt with internally.
2] You have that one to two year period where what's permanent and what isn't is developing.
3] You have the rest of your living days with what's left of you.

Now, the fact that you are so early in recovery makes it difficult to say anything.
Are anti-anxiety meds a good thing or a bad thing for your brain at this state? - I don't have a clue.
You regular doctor probably doesn't either.
I don;t know if taking something like that would be helpful or harmful at this stage.

So -- you really need a neurologist -- a neurologist who is going to help you. In Australia, you may get that - you may get one that says - "you are not ill anymore there is nothing I can do for you" - I don't know.

You may be fine - you may be really messed up -- I don't know. People have come out of month long comas with no ill effects.

The fact that you went on a trip though is huge.
As I said - it was months till I was walking to and from the bathroom standing on my feet.

Now I wasn;t hospitalized.
I was thought to be having a severe case of pneumonia. It wasn;t untill two years after my encephalitis, when I had some neuropsych testing done - that I was sent to a neurologist for a posible brain tumor or something wrong with my brain that the neurologist put together that I had encephalitis from that pneumonia.

Ws brain damage evident - well, I was whacko after being sick - so yes it was eveident -- just nobody aw it - they all assumed I had just gone whacko

By the way - it was well after two tears that I was able to post a posting here.

Do what you can to get to see a neurologist - even if you have to sell your car, your stereo, your tv, whatever, to pay for it.
-dannon

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• By IngridGuerci
• Posted June 21, 2009 at 12:28 pm
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I am not into 'exercising' but I am a walker and always have been. My husband and I take walks on the weekends that are usually 10 miles. A few summers ago we had a major blackout in New York. I work in NYC and live in Tarrytown which is 25 miles north of NYC. The Broadway in Tarrytown is the same Broadway as the one in NYC (Route 9) and I walked home. Took about 8-9 hours but I did it! Wasn't even sore the next day. : - )

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• By dannon
• Posted June 21, 2009 at 2:23 pm
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I remain weak from the encephalitis - so I lift weights to get my strength to about normal.
If I don't exercise, I have zero energy.
But - that's now, not, six weeks after encephalitis.
In fact, without stimulants, I never reach normal awakeness (there's a word for that)
-dannon

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• By muzzamo
• Posted June 21, 2009 at 6:15 pm
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Thanks a ton guys,

A few points that i've gained:

* Its very early days yet
* I'm not that bad (people have been far worse)
* I should be selling my left arm to see an neuro.

I'll investigate seeing how to get in to see a neuro today as a private patient. I had private health insurance at the time of being diagnosed but my parents advised me to go through the public system and at the time my excess was $1000 :-( The public system served me ok until discharge, and then there is no support or advice for encepahlitis and you have to go in these bullshit waiting lists to see a neurologist. If its under $200 a visit I think i'm just going to have to pay the fine and pay for it myself.

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• By muzzamo
• Posted June 21, 2009 at 6:21 pm
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@Danon:

"#1: You should be seen by a neurologist.
Most likely - one did see you - or was working with your doctors while you were ill.
Unless something your doctors feels needs immediate attention, you should be seen by a neurologist sometime within six months to have your first evaluation."

In response to this, do you think that its odd that the first time I would see a neurologist is months after it happening? What if i'm doing all the wrong things in terms of recovery surely those first few months are important?

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• By armandsgrandmother
• Posted June 21, 2009 at 6:27 pm
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I second everything said so far.

The responses to E are wide and varied. The people who die obviously don't post here, though sometimes their family members do. The people who are barely affected don't post here either. Most of us fall somewhere inbetween.

I had E in 1981, at the age of 36. I went back to work as a teacher for 10 years, though it was harder and harder since I was so exhausted. Finally I stopped working full time, and found another type of teaching job that was once a week, and that was much easier.

Because I was misdiagnosed and my doctor said I was ok, I also went on a trip several weeks later. I flew 3,000 miles, visited family and a friend, and attended a conference. I remember very little, but knew I was in bad trouble. My family members and friend were very concerned. I never should have made that trip!

You should be seen by a neurologist asap. Try to find one who has had some experience with E. Usually they've had experience with children who have had E after a childhood disease of some sort.

You may also benefit from a rehab program for people who have had brain trauma. The symptoms and residuals can be similar whether the trauma originated in an injury, a stroke, a tumor, or E. The program can help you cope with your anxiety, energy levels, forgetfulness, etc.

When you feel tired or anxious, your body is trying to tell you to rest. Listen to it!

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• By dannon
• Posted June 21, 2009 at 6:47 pm
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One thing said here that I can't agree with is: " I'm not that bad (people have been far worse)"

muzzamo,
You wouldn't know.
You could be really messed up and just not know it --being messed up, means, you don't know it.

You could be wearing your shirts inside out and not have a clue (I didn't)

That's why you - way over there on the other side of the planet -- need to be seen - in person - by someone who knows brains.
-dannon

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• By muzzamo
• Posted June 21, 2009 at 6:57 pm
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@armandsgrandmother: its great to have found someone else who went through something similar (traveling shortly after). It was horrible for me :-( What happened to you during the trip?

@Dannon: thanks. I Just checked and i'm not wearing my shirt inside out :-)

I think the most disappointing thing about all this is that there are no medical staff organizing all this stuff for me: eg seeing a neuro soonish, maybe joining a rehabilitation program, etc.

I actually have had brain injury touch on me before, my dad had a stroke (I was with him and had to call an ambulance) 1.5 years ago. Another contributor to my anxiety is watching the slow recovery and then the plateu of recovery in his case. Through him I'm aware of the rehab program where I live (http://www.rah.sa.gov.au/birs/birch.php) but I'm not sure if they would turn me away or what. Hospitals are very organised in terms of stroke recovery so this was all organised for my dad. So i'm very conscious (now - I wasn't when i organised my trip!) of the desire to recover correctly and to try and do everything the best way possible to maximize my odds of making a full recovery.

My other big problem is that i'm an engineer and i naturally tend to analyze and rationalize everything and put numbers on things. Unfortunately this doesn't mix very well with brain trauma which is quite irrational :-(

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• By dannon
• Posted June 21, 2009 at 6:57 pm
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" " . . .In response to this, do you think that its odd that the first time I would see a neurologist is months after it happening? What if i'm doing all the wrong things in terms of recovery surely those first few months are important? . . . " "

muzzamo,
Its not like you ran out of oil and kept driving and burned up all your bearings.

What was was.
You did what you could and I'm sure, when you couldn't you rested.

Now you know to be sure to rest.

Just get yourself assessed by a neurologist.
Personally, I don;t think experience with encephalitis means anything (unless you are ill at the time)
Being able to count backwards from 100 is being able to count backwards from 100 no mater what disease you have. Same for being able to walk a straight line, do the tree words, answer some questions, touch you nose stand on one foot and answer some more questions.
Just get checked out.
Hopefully - by one of the good neuros from the half of neuros that are better than the other half...
-dannon

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• By muzzamo
• Posted June 21, 2009 at 6:58 pm
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I'm 26 years old by the way...

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• By dannon
• Posted June 21, 2009 at 7:01 pm
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Muzzamo,
my last comment on this, is this.

If you were hospitalized (in a hospital) for eleven days with a life-threatening neurological disease, I have to assume (not that I am correct) that a neurologist was brought in to see you - or at least review your situation.

Check with the hospital about your hospital records to find out if that were so.
-dannon

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• By muzzamo
• Posted June 21, 2009 at 7:10 pm
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Yeah i'm sure one would have been brought in, but how does that help me now?

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• By MaccaM72
• Posted June 21, 2009 at 9:04 pm
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I came to this site and lurked for awhile.

Here's 1 thing I do know for sure about 'E' and treatment:

You go to the hospital and they do their damnedest to keep you alive. They care for you and do everything in their power to help you recover.

BUT

Afterwards there are very few followups on post 'E' patients. Most wind up at neuro's that are trying their best to help treat some of the residuals because their specialty is brain disorders and brain damage (which is what 'E' causes in most people).

Basically they paint us with a new brush and treat us as such.

Example is me where I consider myself an 'E' survivor with long term effects that I seem to share with many survivors here. (not coincidence). My paint and brush is called epilepsy and that is all I am being treated for. Not that I am not thankful for treatments I am receiving because they are what keeps me going.

Not once after my 3 week stay in the hospital have I had a followup on the virus or other residuals I have that aren't epilepsy related. They get us better to the point they can release us and think we will all be ok but for many of us we are not. After recovery in the hospital we look normal to Dr's and our families but feel different to ourselves it is kind of an invisible ailment. You look fine on the outside so everyone views you as such.

Fortunately being in Canada I have plenty of access to new neuro's and quicker referrals but nonetheless I feel ripped off that there seems to be very little attention to post 'E' patients.

My advice to you is pace yourself in this new phase in life and discover your limitations and take note of them. The things you used to do that you may have a little more trouble with etc. Speak to your Dr. about them and even your neuro when you see one. Every day will be new to you for awhile because it is sort of a self discovery kind of thing.

I say all of this not to create anxiety just as a fellow survivor who is still discovering new things about myself over time.

You have positives going for you based on your scans being clear which is GREAT!

Just try to do some of the things you did before you became ill and pace yourself while doing so. Don't exhaust yourself and take your time. When it comes to work get used to the new graduated work plans you have and see how you feel. Make sure that your "human resources" department and if your company has a health representative are aware of your progress according to you. You may need more time to get back into the swing of things then you or others may think and they should be aware of things so you don't fall behind in your work's expectations of you.

We all have gone through 'E' and at least have that in common. You may find you share some things with other members here but not the worst of what you could find here or around the web. Each of us is different. Get to know yourself better over time and don't hypocondriac yourself based on what others have experienced. Remember you are you and not someone else. It is all about you and what has happened to you. Right now you are in the research phase of discovery about 'E' because it is something many of us were never aware of until it happened to us which eventually brings us to helpful groups like this.

When it comes to anxiety it is normal to a point because your brain has gone through a traumatic experience and that experience will linger in your mind and thoughts. If you are finding anxiety is becoming a problem then speak to your dr. about it and maybe think about the meds you could be prescribed for it. I'm not one for meds myself but I do have a prescription for Ativan that I take occasionally. I usually take half a tablet under my tongue and let it dissolve and the anxiety will pass. Don't rely on meds tho find the things that relax you and use them. Your favourite music, movies etc. Maybe a shower or bath all depending on you and always remember that you survived and that means A LOT already.

If you want to ever discuss things less publicly feel free to send me a private message.

Hope this helps at least a little.

Peace

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