Suspected viral encephalitis

[Daz198181]

Was unwell in November 2018 with Encephalitis. The strain of the illness has never been diagnosed from the hospital. I was just told it was a form of encephalitis that couldn't be fully diagnosed. All I know is I'm not the same person I used to be. I need to understand why my life is slowly going into self destruction with alcohol and drugs just to escape my erratic thoughts.

[Tuesando]

My partner was struck by an unspecified autoimmune encephalitis last year. Don’t let this beat you. Don’t ‘help’ encephalitis beat you by using alcohol/drugs to calm your thoughts. Easier said than done but what will make you pull though is creating and maintaining meaningful relations with other people. We are soon going to be through this dreadful pandemic and we will once again be able to meet, hug and support each other. That’s what is going to get you and so many others through this.

[ASH1956]

Hi, I know how hard coming to terms with Viral Encephalitis is as I suffered in December 2017, being Hospitalized prior to Christmas and then discharged with minimal support. No one told me what to expect as at the time I was just happy to have come through what my Wife said was a rather harrowing time, I was unconscious for 8 days so many of the scans, lumbar punches etc where unknown to me. The Hospital couldn't identify the cause, even after sending tests to specialists in Oxford so I don't think this is unusual. It wasn't until 6 months later when I thought I had recovered did I suffer, Depression, Anxiety, Extreme Fatigue, Confusion, Lack of Concentration, Social Isolation (I didn't know how to talk to people or handle things like crowds, noise etc). The thing with me was I was a bit of a control freak, making decisions, controlling things etc both professionally and to some extent privately, as well as being fit. The hardest thing was to ask for help, you have made this step and many people do not know how hard it is to admit that there has been a change, especially true of us MEN!! This is an Acquired Brain Injury, the swellings due to the Virus may have affected different parts of your Brain, some slightly and some areas more so. Each area of your Brain is responsible for all aspects of "YOU", so it is hard to say how to overcome each persons experiences, suffice to say Alcohol and non prescribed medication will not help but you know this hence your post. Many GP's do not understand this complaint, but I was lucky in that mine supported me and sanctioned help when asked. My Wife was a major support network for me, most of my family didn't know how to relate to me, what to say and how to react when I was withdrawn, quiet and non communicative. Three years later, I am trying to attempt new things etc but each has it's own challenges. I hope that this helps in a small way, happy to answer any questions you may have if I can. 👍

[TeamEncephalitis Administrator]

Hi Daz198181, please know you are not alone and we are here to help if you want to talk this through, a member of our experienced Support Team at the Encephalitis Society are available to talk - our email is [e-mail], or call [phone] Mon - Thurs 9-5, Fri 9-4.30 GMT.

Please know you are not alone in how you are feeling.

[Ocean96]

Hi Daz198181

I'm so sorry to hear you've been unwell and are experiencing the long-term effects of this devastating illness.

I myself was diagnosed with autoimmune encephalitis in 2017 and again in March 2020. I completely relate to you struggling with the after-effects of this illness and not feeling like the same person. I too, have struggled with these emotions. It's very confusing and frustrating at times. I definitely tried to return to my 'normal' life after recovering the first time but over time I learned/still learning to live alongside this illness.

I found/still do find talking to others affected really helps. It makes me feel less alone and less confused knowing there are others experiencing the same things. The Encephalitis Society has a great youtube channel. I must have watched every video on it. It's reassuring to know I'm not alone in this battle and I'd highly recommend giving it a look.

Here's a link: youtu.be/Rgco3aiIVMs(Not working as expected?)

Also, The Encephalitis Society does virtual gatherings, I join them myself and find it great to get advice from other people. Advice on how to deal with the after-effects of encephalitis.

Here's a link on how to get involved: encephalitis.info/blog/virt...

All the best and thank you for sharing your story with us.

We are all here to support one another.

Everything passes, wishing you all the best.

[Littlefoot19]

Hi Daz,

I’ve just seen your post - I’m new to the forum and the world of encephalitis (I’ve given a most likely too wordy ‘summary’ of what’s happened to me on profile) but wanted to let you know that I’m thinking of you.

All the best,

N

[Gandalf2]

Hi Daz, Ash1956 and others have pretty much all I would have said. All I would add is save the intoxicants for special occasions or avoid altogether, otherwise you will hurt yourself or slow your recovery. I fell downstairs on a binge and ended up with cuts and bruises. Would have felt pretty silly if I had broken anything and had to call the medics after all they had done for me. I have never felt so stupid in my life! I won't be buying any more.

Eat well, learn new skills, hobbies, cooking etc. Take vitamins and minerals to help repair the damage and raise your spirits.

I found reading helped, exercise if safe and talking to people, friends, relatives if any. I'm retired and not working but coming home was like to a stranger's house. Whose was all this stuff etc. - pretty hard to deal with. Many things I had previously been interested were now irrelevant. Feels like I'm back at square one, find new interests etc., start again.

Support should be there via GP etc. It is in Leeds. Physio, counselling, etc. Lockdown makes everything harder.

My excellent wife has been great, very understanding and supportive. She found me during the first seizure and saved my life. I've had about five seizures, been unconscious in acute wards on drips and strong medications. It's been a year now, I'm now at home and I'm still recovering. The NHS were great, fantastic staff and very understanding on the neurological ward and elsewhere. God Bless them!

I'm pretty much in need of supervision and can't be left alone for long. I need a chaperone if outside and have a wrist contact alarm to press if I collapse in the house. We applied for attendance allowance and got £80 a week which helps and will be applying for carer's allowance too. So the financial worries are reduced.

But there is no escaping the fact that it is life-changing and a great strain on the mind and character - Who am I now? What do I do next? Will I recover?

I found being around animals, dogs, cats, donkeys helped - anything affectionate. And helping others out felt good too. There's still a lot to go for - it's just finding a way through. Motivation is key, avoid anything too depressing. You've done your bit and are due a bit of rest.

Someone recommended Epsom salts baths and they seemed to help relax and calm the fevered brain. Available from all good chemists.

As I always say - "There's something about you that's needed in the World, you just have to find out what it is"

All the best, Gandalf2 👍

[Paula-38]

Hi Daz198181, I have also had viral encephalitis way back in the 1970's as a 1 year old the following day after my birthday party, so I know little about the earliest days, I can recall the odd thing from the age of 2 but nothing sooner and I doubt anybody else would either if it were them.

My Dad has informed me that I had a lumbar puncture and a CT scan but obviously I don't recall having them or even being ill in an isolation ward for 6 weeks either but that is what he has informed me.

But as soon as I started learning to talk I definitely experienced anxiety and severe .paranoia (plus I was epileptic rather than fatigued). Concentration has always been a major problem for me. Then during all my school years I experienced Social Isolation, bullying and depression. I was too petrified to talk because I feared that everyone sounded better than me and everyone hated my horrible voice so I avoided it at all costs to the point I would write it down or appear ignorant or deaf and dumb but even when I did talk I couldn't make a full sentence I kept getting stuck after about two words or so, I kept stopping and starting but nobody knew why or what for. My Mum was a major help to me. Like yourself I was always quiet and non-communicative but I wasn't shy though. I hope this night help you a bit. ❤

Please feel free to ask me any questions at all and I will do my best to help you out if required.