new out of hospital with encephaltis

[tonywalker]

Hello, this is tony walker from lancs, uk. just come out of hospital with encephalitis and things are desperate. But with time who knows, thanks

[CindyBurton10]

Hi Tony,

I've just popped on for my daily read. I don't know if I can help, but in what way are things desperate..... and what help, answers do you need???

[tonywalker in reply to CindyBurton10]

hello cindy, thanks for reply, sorry if it sounded melodramatic, im new to this encephalitis and im at a loss where to go next. always been a worker and this has knocked me for six. forgotten how to do my job and my reading\writing has diminished to 0.1. plus loads of other odd symptoms, anyway cheers for reply, take care,

tony walker

[CindyBurton10 in reply to tonywalker]

Tony, when S..t happens it's dreadful.

I had a brain haemorrhage 8 years ago. I was at work in my office. I had just had a meeting with colleagues. They had left and I had some lunch then I got a dreadful pain in my head. I'm a strong determined character and thought the pain would pass, it didn't. Anyway long story... Here's the short version. (To had I was a very fit, healthy person pre B.H. in a high profile job in my industry. A driver, workaholic, happily married with one son)

Afer 5 mins of head pain a colleague called an ambulance. I went to my local hospital in Doncaster. I was then red lighted by ambulance to Sheffield Hallamshire. By this time I was In a coma and my family were told ( once I arrived at the hospital) I may die if they didn't let the consultants operate immediately. So I had a 5 hour brain op removing the cause of the pain to save my life. I had had a a massive brain bleed caused by an AVM. I found out much later I was born with it and it took until I was 49 for the AVM to burst and cause me my life changing problems.

The problems are balance issues, noise, light, fatigue, and so much more.......

I can't work, drive or leave my home by myself. I have know independence what so ever. The changes have been horrendous. It has taken me and hubby these 8 years to come to terms with all that has happened.

If I could get you to were I am without alll the c..p that has happened I would. But you have to go through it yourself. I can't begin to tell you how difficult it has been, but we have come through. And if I had had a me to answer all my questions it would have been easier.

So Tony, if you your family / friends have a question, worry or anything please ask. Someone on here will help

Take care 😃

[Kirk5w7]

Hi Tony, I'll help if I can.

My name is Janet I had viral encephalitis in Feb 2012. I was 3 weeks in a coma and a total of 3 months in hospital including rehab, were they taught me to walk and many other things, so that is 4 years ago now and I am still learning new aye to cope.

I have been unable to work or drive. I was not expected to live or if i did I would be in a permanent vegetative state, or blind and certainly nothing like the person I was.

However, I have been lucky, after my brain rebooted as I like to put it , the old me eventually emerged, with apart from the usual fatigue and balance problems some vision problems.

So, ask away I will endeavour to answer any questions you may have.

Have you joined the Encephalitis society, they are another charitable organisation who can also assist with queries and support.

There are not a lot of us around the survival rate of encephalitis is quite low.

Welcome to this forum I have found lots of support on here.

I live in Manchester.

Janet xx

[tonywalker in reply to Kirk5w7]

Hello Janet. When this hits you you tend to think youre the only one but through similar sites (and this one) you realise that youre not. Ive always had an active life and now zilch. Im on my phone now. Will check posts when i get home. Thanks.

Tony

[peaches2]

Hi Tony,

Head problems are never easy, or so it seems. We are a friendly bunch on here so always feel you can post whatever you feel. Nobody judges, everybody helps one another and that's what the group do best! I really wish I had found this group when I was first diagnosed, it's been a godsend to me!

I hope you're not struggling along alone!

Take care and best wishes.

[AliCathy]

Take care, for me it hypes simplex viral encephalitis was three years eight months ago energy and appetite have been gratefully received - I had really missed them! All took time to resume - please let me know how you're doing and what, if anything, I can support you with.

[cat3]

Hi Tony and welcome. Can you tell us how long ago your encephalitis happened ? And can you describe some of your symptoms.

For me it was a brain haemorrhage, 4&1/2 years ago which left me with fatigue, mobility issues, headaches and short term memory loss. All of these after-effects have improved with time and perhaps you can look forward to improvements and progress too. Regards, Cat xx

[randomphantoms]

Hi Tony and welcome .

The Headway helpline details are in a pinned post on this page so you could give them a call on Monday .

May I suggest you make a list of questions for them . It could be in the form of a memo on your phone or a written list if you're up to it. They are lovely people.

Meanwhile we will do what we can to help.

Love n hugs

Xoxo

[tonywalker]

Thanks for the kind replies, my issues started a few months ago. It first became obvious at work, I have been in my current job for 45 years. I am well known in the television field but I was getting negligent in my duties at work. I am head of my department but I was having to ask minors about basic procedures. I had been taking at least 1 day off a week with doctors appointments which were going nowhere. I am so annoyed with the NHS. I was even asked if I had been drinking on one occasion, I wouldn't dream of attending a doctors surgery with a drink inside me.

I also recently developed tinnitus and was sent to the nearest Specsavers, I even took down a list of my symptoms and showed them to my doctor but after glancing through it she handed it back to me. It was then she gave me a prescription to combat the tinnitus. As far as I am aware there is no cure for it, so what the tablets were for I have no idea. The list mentioned looking for non existent people in the house, putting dustbin waste in the washing machine, forgetting how to do my job, rude to work colleagues, spending money like it was water, (£1000 in 4 days on rubbish), constant sleeping when off work, memory span of less than 1 minute, can't remember what I have just said or what I have just watched on tv. Plus other bizarre happenings totally alien to my normal way of life.

One day I collapsed at work, strange things had been happening that morning, stacks of work equipment walking towards me, really scary, after I dropped to the floor I came around and insisted one of the apprentices took me to hospital, after a brief examination it was decided I should go for immediate CR and MRI scans. These were carried out and I was then given the option of waiting for the results (6 hours) or go home and ring up later that day, so I went home and rang up later that day.

They said the scans didn't show anything amiss and that worried me more, next day at work my secretary came to me and said it was Blackburn Royal on the phone but I couldn't understand what she we was telling me, so I gave the hospital permission to accept the call, they said they wanted me in immediately, I said it was inconvenient as I was due to attend a business lunch with some customers. I was told forget it, they wanted me in NOW. However I still went for the meal, what difference could a few hours make, especially as the scans were clear. When I arrived at the hospital I was totally unprepared for what happened. They told me a bed was ready for me, my boss, who I asked to wait outside the hospital was amazed, we thought it was just to verify the results of the scan, But no, they said "abnormalities" had been found, I was already in a confused state which I had been in for a few weeks. But this really threw me. They asked permission to carry out a lumbar puncture, this brought back memories of an operation I had a few years ago when I had heart valve repair, agony. But i was reassured it wouldn't hurt so I consented, the results came back and I was told I had this illness I had never even heard of. One week in hospital and three weeks on I am home, wandering round as if I dont know my own home, I even struggle to make a drink of tea, anyway thanks for reading.

Tony

[Elenor3]

Hi Tiny, I can't believe you've been sent home with no community support, that's horrible for you. Isn't is awful that we almost have to keep asking for help even when it's obvious that were not well in this day and age? Please ring the headway helpline for more advice, and I would ring your GP surgery first thing on Monday to ask what support they can refer you for, you obviously need it. Good luck. Poor you sending you a hug.

[steve55]

welcome

steve from the south coast....friendly for a southerner!!!

[cat3]

Tony, from what you've told us so far, I'm guessing your issues happened very recently (less than a couple of months ?) in which case it's inconceivable to me that you've been discharged from hospital, let alone struggling with a return to work.

Such a brain condition can take many, many months of recuperation so I'm not surprised you're not coping. You need proper advice on your condition, and lots of rest to allow your brain to start recovering.

Please phone the Headway helpline, free on 0808 800 2244, for support and expert advice on managing your condition. They also have printed information which you should show to your company, before taking substantial leave !

Please come back & update us on your situation after speaking to Headway.

Sincere best wishes, Cat x

[angelite]

Hi Tony and welcome : )

I had suspected Encephalitis over 3 years ago : stiff neck, movement disorder, motor fits ( yep, scary ! ) Unfortunately my standard MRI was 'clear' 2 days into symptoms so I was thrown out to outpatient Psychology ! The Enceph symptoms morphed into more MS type stuff, culminating in spasticity at 5 months. Had a relapse of the MS type symptoms recently, following urine infection that turned into sepsis, so now awaiting MS tests. Never got a proper diagnosis 3 years ago or any follow up. It will all come out in the wash soon, I hope !

My actual Encephy type symptoms lasted 6 1/2 weeks ( MSy type ones carried on till 5 months ) but wasn't back at work until 6 months - had to reduce hours as I was left with some spasticity and it was a cleaning job ! I put the tinnitus, memory and concentration probs I still have and some fatigue down to Enceph, the spasticity and mild balance probs etc I was left with I'm not sure about .. ? I did plateau out recovery wise at 5 1/2 months but had a slight improvement in core strength at the year and a half mark. 6 months is average for Enceph recovery.

There are all shades of Encephalitis, from the worst, life threatening level to mild flu like symptoms. I guess I was somewhere in between.

I'm sure you are still feeling very fatigued, besides coping with residual symptoms so plenty of rest between any small activities you can manage. Eat well. I was advised by GP to take maximum daily dose of paracetamol for its anti inflammatory properties ( as I got no treatment ! ) I also took omega 369 supplements, considered to be a natural anti inflammatory, plus general multi vitamins/minerals supplement.

Kind regards,

Angela x

[tonywalker in reply to angelite]

Thanks Angela,

Because of the recent screw ups by my doctor I have effectively sacked them, I tried enrolling with a new practitioner but they wouldn't help me with the form filling, I have an appointment with my local CAB office on Friday. I went to my doctors in February with tinnitus and confusion issues, the confusion was ignored and I was sent to my local Specsavers for a hearing test. I even kept a log of the issues I was having and it wasn't until I collapsed at work I wastaken to hospital where scans were carried out, they were clear on the day but on the day after I was asked to return where I was told there was an "abnormality". Now I am a right old pickle. I am still very confused but the tinnitus has been relieved by a pair of blutooth headphones playing white noise all day. A constant tone is at least more tolerable than tinnitus. I did A level English but having to ask for help with forms is degrading. Take care Angela, and thanks.

PS, typing is still pretty much as before, odd isn't it? But I heard that can be the case.

[angelite in reply to tonywalker]

'Should NOT have gone to Specsavers' in your case ! : ))

I like that you have 'sacked' your docs - would extend this to the unhelpful neurologists too , in my case !

I learned to live with the tinnitus ( low hum, varying in volume - the ever present lawnmower ! ) and found low music/background noise at night helps take my mind off it. Good that your method is working for you - you might find the annoyance diminishes as time goes on : )

I was top of the class at English in school - you would never have guessed now ! I do find that my typing is a bit dyslexic - I get letters the wrong way, miss out or add them, omit whole words and can't spell anymore.This stressed me out at first but now I just take it in my stride, reread my posts and make the corrections. Don't worry about needing help with forms , take all offers of help you can get, with everything ! Remember you are v. early stage in recovery. While most people see the greatest amount of recovery in the first 6 months, there can be small, sudden improvements later on, even after you seem to have plateaued out for a while. The brain is designed to continue healing itself, albeit often at a slower, less noticeable rate : ) x

[tonywalker in reply to angelite]

Hello Angelite,

you mention dyslexia, well what is that thing called that Vicky Pollard gets out of Little Britain, lexdixia, is it similar. Sorry, just trying to cheers us up a bit, you take care, by the way, if you never watched it you will be thinking "what the hell is that loon on about"

Tony

[tonywalker in reply to tonywalker]

Thankyou for your kind posts, I have no family in this part of the world and my best friend who is an accountant is out of the country. She is back tomorrow, HOWEVER, today I needed help with some complicated forms and sought the help of the local CAB. They were to change my doctor because of what I perceive incompetence.

I think it may be a blessing in disguise, the kind lady who helped me also got in touch with Social Services. I know they have had a slating over the years but they are coming to see me next Wednesday. She was astounded that I have had no follow up service from the hospital or my doctors. When I get right I will certainly be on here offering any help I can. Prior to becoming ill with encephalitis I voluntarily helped with the local Alzheimers group. This was in addition to my full time job. Looks like I'm going to be busy! Thank you all, take care.

Tony Walker