Introduction - this site contributes to my anxiety :-( - Discussion - Encephalitis Global Support Community

Hi all,

I spent 11 days in hospital starting 6 weeks ago, was diagnosed with "unkown vital encephalitis" - as in they could not figure out what virus it was that caused it.

This site really scares me because I read about all the problems you guys are having years on - I also read that many recover fully from the illness and at 6 weeks it seems perfectly possible I fit into either category. Sometimes I wish I hadn't discovered this site and only if I were still experiencing major problems 1 year out that I came along did I join.

At the moment I am having problems with anxiety (this site DOES NOT help unfortunately :-( ), and also a "limit" in the amount of stimulation I can have in a day, with major suffering when I hit that limit - I think I have read people here have similar i'm not sure what to call it. I'm not really suffering any physical problems

I am also suffering from some headaches but it seems that this is caused by a bit of a dodgy neck and hoepfully that can be treated with physio

I was hospitalised at the point of confusion (immediately when the confusion started), but prior to that was having hallucinations as well as a huge headache (got knocked back at emergency twice before being admitted on the third visit) No seizures and no coma. MRI's in hospital were apparently all clear. Since leaving hospital I've had no support - no visits to a neuro or anything.

1 week from now I'm going back to work, starting with a "graduated return to work" with 3 1/2 days for a fortnight, then 5 1/2 days for a fortnight, then 3 full /2 half for a fortnight, then 5 days a week. I'm very anxious that I wont have recovered by then and also that I might totally bomb out but I'm not really sure what to do.

I'm also really annoyed that I'm not exercising at all apart from walking - before hospital I was active, doing weights, playing basketball etc.

I have some questions:

1) This far out (6 weeks) what support program _should_ I have? Should I be visiting a neuro often (i'm on a waiting list to see one for the first time)?

2) How much of a concern should going back to work be? Any advice?

3) If anxiety is causing me problems should I be limiting my time here? Should I be on anxiety meds (my doctor has offered them)

4) How can I ease myself into exercise? Does anyone have any advice with that? How long should I wait before starting to exercise?

5) The people who join this site are obviously those who are experiencing longer term problems, do people believe that many do honestly recover quickly?

6) The problem I have with reaching a "limit" and needing rest and seriously suffering for reaching that limit - should I be avoiding coming anywhere near that limit by being very sedentary or should I be trying rehabilitate myself by doing short bursts of things, and coming close or just touching on that limit each day?

Thanks :-)

By muzzamo
Posted July 4, 2009 at 8:20 pm
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thanks belly. I've had some fantastic advice in this thread.
So your iq is back now belly?

I'm a software developer (java if anyone is interested) and the way I describe work to people at the moment is that it is as if I went out drinking the night before and passed out, then went to work the next day!

By Belly
Posted July 4, 2009 at 5:18 pm
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I do remember being stressed about recovery - I just reminded myself how ill I'd been and how lucky I was to survive. That kept me going. For me, fatigue was the worst especially after starting work. I was off work for about 4 months and went back gradually over about 8 weeks.
Reading through this post and alot of bells ring, some of the information on this site stressed me too and I'd often take a break for a few weeks.
I had meningoencephalitis just over a year ago and what a year! Not one I'll forget.
I took everything as slowly as I could. Doctor was supportive and signed me off work for as long as I wanted - it's a serious illness! My Doc said to me, if you're tired - sleep. That's exactly what I did.
Work was hard for me, a bit frustrating too, felt as though my IQ had been halved.
My advice overall (coz it worked for me) take your time, don't rush anything. Don't push yourself a work.
After one year I'd say I'm 90% myself. The 10% missing is fitness really.

By dannon
Posted July 1, 2009 at 1:15 am
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Muzzamo Said:
" . . . my biggest fear is recovery stopping or coming to a plateau and being left with problems for
life. "

dannon Says:
You can stop worrying about that! — that description fits some of the best people I've ever met...

By muzzamo
Posted June 30, 2009 at 10:34 am
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Thanks. Probably my biggest fear is recovery stopping or coming to a plateau and being left with problems for
life. I'm only 26 I shouldn't need to be dealing with this although I'm sure I'm not the first and won't be the last. I have no idea how much in common my symptoms 8 weeks after will have with 2 years after although if peoples opinions here are anything to go by hopefully the answer is very little.

I also continually worry that I may be "doing it wrong" and making this outcome more likely than it needs to be :-( and then I worry that worrying itself (ie having stress is a form of "doing it wrong" itself.

By IngridGuerci
Posted June 30, 2009 at 10:04 am
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>>By the way my first day was exactly like yours Ingrid. Wednessday I'm going to actually try and do some work which will be interesting :-)<<

Well, have fun and don't get too frustrated. Don't be embarassed, either. Ask for help if you need it and keep reminding your co-workers that you had a brain illness. When they tell you they've never heard of it, copy some of the information from the website and give it to them. I didn't do that; wanted everyone (including myself) to think I was just fine.

As they say in the acting field, Break a leg!

Ingrid

By MichelleN
Posted June 30, 2009 at 9:41 am
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I'm not sure, but I think I had E in 05 and I'm still finding I improve, but sometimes it's barely noticable. Sometimes I don't notice, but others do, but sometimes they don't notice and I do. The first few years are the easiest things to notice like my being able to get out of bed.

I still have the fog, but it's not as often or as thick some days. That tends to come with stress of any kind.

I am able to volunteer 2 or 3 days a week without too much trouble the problem is the kids. When I was at the thrift store I was going all but 1 day some weeks. It's all about taking things slow for me.

Michelle

By muzzamo
Posted June 29, 2009 at 6:23 pm
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Well apparently my MRI was all clear... It's scary stuff to consider that it's possible that it was not clear and the neuros were reading it wrong!

I was fortunate because I left hospital walking. Hopefully I fit into the "most who fully recover" category as you describe. It's been 8 weeks since being admitted to hospital this Friday and my main problem is the "brain fog" that seems to limit the total amount I can do in a day and I guess there is fatigue tied up in there as well.

Earlier in the thread someone told me that it takes over a year before you stop really recovering so it's early days for me yet.

By the way my first day was exactly like yours Ingrid. Wednessday I'm going to actually try and do some work which will be interesting :-)

By yetzabee
Posted June 29, 2009 at 2:29 pm
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One thing I learned through this and had others help me when I couldn't was to investigate all my test results. Doctors don't say everything.

I went to a hospital that didnt want me there because of the insurance i had at the time. They discharged me with knothing. When I couldn't even walk.

They said it was phsychogenic, I went from doctors to doctors and when they almost said it was E,, they turn around afte a year and a half and said I dont know what it is leaving me hanging in the air.

The mri if read properly will show you residous in the brain and dymelianation from the damage. The first few neuros didnt know how to read them. The last one did, I had five mri's they all showed the same thing but only one doctor new how to read them but not diagnose me.

So what followed after E for me,, no meds except predisone for a month. And I have been using alternatives for going on two years in sept. They won't perscribe anything.

The fatigue is everyday, brain fog, numbness and tingling from damage, right eye messed up, had to give up driving and work. Blood pressure fluctuating and brain swell. Anxioty and depression.

i use to be very active and did a lot of excersize, the fitness is probably what helped in keeping me alive. But today Im a total blog not being able to do more the one hundred steps on the eliptical.

Everyone is different and they say most people are fortunate and recover. Never lose hope and keep pressing forward and don't look back.

Maybe you should do what Im planning on doing ,, that is going to the mayo clinic. Wish everyone here well!

By IngridGuerci
Posted June 29, 2009 at 10:28 am
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I started off with 3-half days. Day # 1 was just having everyone come over to me and welcome me back, ask about what I had, etc. Before I knew it, it was time to go. Hang in there; have a great day; and, take care of yourself!

Ingrid

By MichelleN
Posted June 29, 2009 at 9:02 am
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I'm glad you are back at work. I do wish you luck because it will be difficult at first like everything new we do.

As for exercise I have found that I need to stop long before I get near my limit since I get my exercise by walking. Occasionally I go farther than I realize that I will be stuck sitting for the rest of the day.

Michelle

By muzzamo
Posted June 28, 2009 at 6:05 pm
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By the way today is my first day back at work since everything happened - it has been about 9 weeks now I think and I'm starting with 3 half days a week. Wish me luck and fingers crossed but I'm prepared for a setback here and there too (I hope I'm prepared :-)).

By muzzamo
Posted June 28, 2009 at 5:57 pm
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Thanks for the advice regarding exercise that's exactly What I was looking for. How long did it take yourself to get to the stage you are at now? What were the consequences of hitting your limit for you? Do u mind if I pm you to ask you more? Did you find yourself overheating?

By curlycanuck
Posted June 28, 2009 at 5:21 pm
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An alternative to anxiety meds is magnesium. I get this headache with anxiety. Now the headache isn't so bad but the anxiety is a knockout. I asked my neuro about it and he just mumbles something about Gabba(a neurotransmitter) . I am now sensitive to caffeine and too much of it can give me anxiety. A medication I have used in the past is Deseryl. It is an old school anti-deppresant but it is also used to treat sleep disorders. It increases the quality of your stage 4 sleep. Without quality stage 4 sleep you can feel fatigued even though you have had plenty of hours of sleep. It also works to control one of the chemicals released by your adrenal glands which works to decrease anxiety.

The anxiety is not about things that could be stressful (eg making a big purchase) but about stupid little inconsequential things. For example, a bottle of liquid detergent split and most of it spilt all over my laundry room. It was quite a mess and you cann't just mop up detergent because it suds. I had terrible anxiety I thought I was going to throw up. I couldn't get down to cleaning the mess for over an hour. It was frustrating and was going to be a hassle but such drama over a little spilt detergent. When I finally got down to tackling it I found it had acquired the consistancy of toothpaste and rater than wiping it up I could scrape most of it off with a spatula. It ended up taking less than 15 minutes.

As far as exercising goes do not go anywhere near your limit. Start out very slow 10 minutes or less and slowly increase the duration and intesity weekly. Expect setbacks. Sometimes you will strain to do something you accomplished easily weeks earlier. I started out with only 2 minutes on the eliptical twice a week but ended up doing 40 minutes plus and 45 minute exercise class as well 6 times a week . I am back at square 1 due to medication changes but I am confident I will be back up to full health because I did it before.

By AngelaMN
Posted June 24, 2009 at 12:20 pm
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Hey there Aussie friend,

Everyone here has given some pretty good advice. There are a couple things I can add. First, I think the anti-anxiety meds has to be up to you if you think you need them, I say go for it. Increased anxiety=increased stress.

Secondly, since you were diagnosed with viral encephalitis with an unknown origin, I have to ask if you have ever been tested for lyme disease? I did some looking on the web, and lyme disease is spreading in Australia like it is here in America. A couple sites you could check out to see how many symptoms you have are: www.ilads.org, or www.lymefighters.org. I believe both have symptom checklists. The great thing is, if you do have lyme and you get it diagnosed before it goes into late stage (like myself), you can be treated with antibiotics and get completely rid of it. Please take some time to research this so you don't end up sick for six or seven years before finding out like I did.

Wishing you better health,
Angela

By armandsgrandmother
Posted June 23, 2009 at 11:27 am
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My HMO, Kaiser, has been pretty good. Once I was seen by a neurologist (I had to insist on that), he diagnosed me and saw me every few months after that. And after several years he saw me once a year. After he retired I was sent to a new guy who actually has experience with E, since he works with children a lot. When MRI's were invented they gave me one, and the lesions showed up. I've had another maybe 5 years later, which showed no change. My current neurologist wants to do another but I don't see the point. They do an EEG every now and then, which are always abnormal.

Unfortunately Kaiser didn't think to send me to a rehab program. A neighbor who had a stroke suggested that! I was the only person with E they had ever seen, but it made no difference, since I needed the same help as everyone else there. Please consider a rehab program. They can't cure you but they can help you cope.

As I said, I don't remember much about my trip so soon after E. I do remember taking a nap and my cousin waking me up for dinner, and my head was hurting so badly...he said later that my disorientation scared him. I was in 2 cities, Philadelphia and Boston. I stayed at a friend's house in Boston, where the conference was. I have photos but honestly can't remember much of anything.

By WendyStation
Posted June 22, 2009 at 2:39 pm
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Muzzamo asked, "Does anyone know if there is a problem taking anti-anxiety medication during recovery?"

From personal experience (survivor, HSE 1999), I can tell you that there is no problem taking anti-anxiety medication during recovery.

However (...isn't there always a "however" paragraph?) it is very normal that a person has to try a few anti-anxiety medications, to find the one which is right for them. This trial and error approach can take many weeks, and of course, is administered and monitored by a medical professional.

Again, I'm not a medical professional... I am merely an encephalitis survivor, speaking from personal experience.

By kellys_mom
Posted June 22, 2009 at 11:07 am
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Hi, Muzzamo.
You asked, "Does anyone know if there is a problem taking anti-anxiety medication during recovery?"

Kelly, my daughter, could not tolerate anxiety meds even at the lowest dose. I figured out later that what her neuro thought was anxiety was actually "flooding". Flooding is the brain attempting to process too much stimuli at one time.

My advice is to recognize your physical and mental limits in these first few months of recovery. Rest often, good nutrition (emphasis on quality protein and limited carbs), as well as adding extra B vitamins may help your brain process its own recovery.

Linda

By MichelleN
Posted June 22, 2009 at 9:51 am
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I'm not exactly sure when I had E. I am pretty sure it was Nov 05 that I was diagnosed, but that was after months of the oncoming E signs.

I still put my shirt on inside out, but at least I stopped trying to figure out why my shirt didn't fit only to find out it was my pants.

Ingrid, my doctors told me that walking is a really good exercise as good as most with less damage. My doctor said that moving is exercise it's just how much we do of what and what our bodies can handle.

I'm not an engineer, but I tend to analyze things. With the help of my medical journal I have found many things that my doctor couldn't without my having the medical journal. People tell me I'm more logical than most "normal" people.

Now if I could just analyze how to get dressed in the right way all the time. I did come up with a way for many things like I put my socks in the shoes so I don't put my socks over my shoes.

I'm not diagnosed epilepsy, but I have been told to go if I can get there because they understand seizures. My family set most of my stuff up after E and they still do many times so that is a big help. It helps a HUGE amount with stress.

If the stroke group turns you down it won't make things any different than they are now except you know you aren't missing anything that might help. Good luck with that.

Michelle

Welcome to Inspire!

Introduction - this site contributes to my anxiety :-(

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