Diagnosed with Encephalitis

[Remos]

I was diagnosed with herpes simplex encephalitis in May this year and I'd like to share my journey so far.

It began when I started to feel a little strange. It was like I wasn't quite in the room with everyone else and then I started to have periods of feeling tired. A few days later I started having headaches which was put down to the 2nd covid vaccination I'd just had.

My symptoms worsened when I was resting in bed one day and suddenly I had this overwhelming feeling that something terrible was about to happen to me! It was like the world was about to fall in all around me. It lasted for about an hour after which I slowly recovered. Really frightening stuff. Unfortunately, it happened again a few days later but this time I went into a full blown seizure and was rushed into hospital where I was put on a ventilator and kept in ICU for 2 days.

Initially the doctors thought I'd had a stroke and then they thought it might be a tumour. However, after a number of tests and MRI/CT scans together with 3 lumber punctures (2 were unsuccessful!) they concluded it was encephalitis. I was put on 3 infusions a day and discharged after 3 weeks with anti-seizure meds but no information or support. Absolutely nothing. I've since had my follow up MRI and am awaiting the results.

In the meantime I suffer with many symptoms:-

Dizziness, Detachment (outside looking in), Headaches, Fatigue, Muscle pain, Pins and Needles and just an overall feeling of being unwell. I think I've also just started with sciatica in my left leg! All these symptons seem to change in severity each day.

It's all very scary and I don't really know what to expect going forward. My wife has read out a few posts where other people seem to have experienced similar circumstances and have slowly recovered so I'm hoping it's all just a matter of rest and time.

Happy to hear back from anyone.

[Paula-38]

Hi Remos,

I'm SO sorry to hear that you are in the very early days following Herpes Simplex Encephalitis. I understand that you are three months on but I can well imagine that it CAN feel like a year or longer .

I had the same diagnosis and type of encephalitis as yourself was back in the 1970's (just after my first birthday).

I had a lumbar puncture, CT scan and an EEG because in those days MRI's were not out. I believe that I was also prescribed anti seizure meds as well as antibiotics because they didn't have Acyclovir in those days. I believe that I was In an isolation ward for six weeks and then my parents were told " oh she has got Encephalitis, she will get over it. They were also told to keep an eye on me if and when I picked something up l(ike kids do) incase I had a high temperature which would put me in hospital and it did do but that stopped when I became an adolescent and I have had no trouble since then physically. Then my profound complex Obsessive-Compulsuve Disorder set in which I still suffer from and it's SO disabling I wouldn't wish it on my worst enemy.

.

I have almost recovered at a very gradual pace over my entire lifetime.

Please feel free to ask me any questions anytime

Hope this helps you Remos.

[Remos in reply to Paula-38]

Hi Paula - thank you for your sympathetic and understanding reply. Did you suffer any seizures and if so did they stop after a time? I had three at the start and am currently on meds which seem to be working. I just hope I can come off them at some stage.

[Paula-38 in reply to Remos]

Yes I was also diagnosed with Status Epilepticus ,Every time I picked a virus/infection/bug up that resulted in repeated grand mals and I was often hospitalised. But when I was ten they changed my medications to new one's so I gradually improved from having them every month , every other month, then a year free , two years then four years free and then it went to five years. I was 18 when they stopped.

Now I'm about twenty years free but still take my medication. I also thought there would come a time when I could stop taking them but apparently I have to take them for the rest of my life.

However when I was little it was three medications three times a day to

1 medication twice a day and the other at bedtime so I'm quite happy really.

[Paula-38 in reply to Paula-38]

P.S I haven't had one for 28 years now

[alpappy]

Hi I wish you well with your recovery We all have a different experience but with me I have memeory problems and lack of taste and smell But am back to doing normal things I drive can have the odd drink and mostly feel well Look after yourself ! All the best Dr Alan Papert nz

[Remos in reply to alpappy]

Thank you for taking the time reply, it’s very appreciated. It’s also good that you have made a full recovery. It gives me hope.

[Tuesando]

It’s early days and recovery from encephalitis can take a long time. I have seen it up front. My partner suffered encephalitis in June 2020 and we have seen great improvement but many things are still very difficult (seizures, sleep, tiredness, anxiety, depression and memory issues). Your symptoms seems very common. Two things I have learned are that the need for patience is paramount for the recovery and that the NHS neurological follow up is very limited. Your wife really needs to take off the velvet gloves and keep contacting your consultant to get the support you need. Lastly, use the encephalitis society’s resources. They are a great organisation

[Remos in reply to Tuesando]

Thank you for your reply. I think you’re right in that patience is key. I’m always asking myself why I don’t seem to be getting any better. I’m hoping like you and your partner it’s all about time, patience and belief. Thank you .

[Gandalf2]

Hi Remos, sorry to hear you have fallen to Enc; the Society and the people here on the forum are a great help and can be a positive lifeline if things become tricky. Unfortunately the therapy for Enc is expensive and time consuming so it can be spread rather thinly (or none at all) and not match your needs or the promises you may have been given. You may have to pester and keep records of all the calls, symptoms, appointments and meds as things progress. Frightening seizures, intensive care, drips, hallucinations and various hospital admissions and re-admissions are pretty much what is to be expected - plus a lack of follow up information - not even a three fold leaflet! and a battle to get the support that is helpful and even vital for recovery.

Getting the correct diagnosis is a bit hit and miss and without that the medication is going to be trial and error too.

I'm on a range of meds including anti-seizure ones and I feel more secure in the belief that my condition is under control. I still suffer loss of taste and smell, memory loss, balance problems and fear of crowded places, supermarkets and unpredictable situations, e.g. dogs and kids on skateboards. A walking stick can be reassuring and signals to others that you may need a little consideration.

Without my wife's diligent care and support I would be dead by now. Luckily we are both retired now so a great part of the burdens and obligations that can be part of everyday life are removed. The Internet is a great asset, books will pass the time and YouTube and the TV provide entertainment.

I found writing and sketching a another way to pass the time and if you can, exercise too. I started by walking downstairs, then partway down the street, then to the end of the road and down the hill and back. Now I'm able to go around the local streets and should soon be able to head to the local supermarket.

Get out of bed if possible and try some tasks like cooking if you can get some supervision. Little and often and get plenty of rest in between. My neighbours are happy to help but so far I'm able to do most things. My goal is moorland walks of several miles and maybe some cycling, sailing and camping. That would be good.

A healthy diet helps - salads, protein, energy foods and vitamins are all good and help you on your way. A lot of the time it's up to you how well you get and it can be a struggle. But you can probably do what needs to be done.

Best Wishes, G2

[Remos in reply to Gandalf2]

What a reassuring response. Thank you very much indeed. Lots of good advice here all of which I need to start introducing to my daily routine. I hope you continue to progress positively in your own recovery. I’ll try and keep you up to date with mine.

[Gandalf2 in reply to Remos]

Hi Remos, thank you for your reply, good for me too!Once you develop a routine it helps to create a structure which you may have forgotten/lost when memories were erased

I've a few other posts which may be of help too, have a look by all means.

I'm working on revising the contents of my hospital bag at the moment.

It's kept by the door and saves a lot of rushing around if and when the time comes.

Having your own stuff around in hospital is reassuring.

Here's my list:

Bluetooth headphones

Bluetooth MP3 player and micro USB mains lead

Books

Dental floss

Diary (essential to keep track of things)

Digital watch

Earplugs

Facecloth/flannel

Flashlight + batteries

Fleece blanket

Fleece dressing gown (doubles as extra blanket)

Get well cards

Gillette razor

Gillette razor blades

Ibuprofen

Micro USB mains lead

Mobile phone

Mobile phone charger

MP3 player and USB mains lead

Nail clippers

Pens

Pyjamas

Scissors

Shampoo

Slippers

Soap

Socks

Toothbrush

Toothbrush charger

Toothpaste

Underwear

USB mains lead

240v (UK) mains plug adaptor (2 pin)

You will have to hide scissors, make sure they are the blunt ended type (suicide/assault risk). Don't take any valuables - I lost a metal watch when being scanned and it took about 8 weeks and many attempts to get it back. I take a cheap plastic watch now.

Personal items and valuables in your holdall/ hospital bag are more secure.

Pain relief can be a problem, they get pestered by junkies so they can become sceptical.

I was denied pain relief for several hours by a hatchet-faced nurse.

Eventually she changed shift at 7am and I was asked if I wanted any relief by a new nurse.

Relying on others for an assessment of your needs can be a gamble.

The nurse hadn't even read my case notes and told me I was in for a kidney transplant!

Not reassuring at 3am when dangling on a drip ....

I have several spinal fractures which can lead to constant pain.

I now carry my own morphine and Ibuprofen,

But use responsibly - avoid discovery.

Get well cards are useful and let them know that you have friend/family on the outside.

This may sound bizarre but some staff/patients will try to take advantage.

There is a story of a nurse who used a dead patient's credit card 45 minutes after she had died! You have to laugh.

I hope this helps

All the best, there is Hope (and Crosby)

G2

Off my trolley

[Ocean96]

Hi there,

I’m so sorry you have been so unwell. Also, I’m so sorry you were discharged from hospital with no support. This is such a common occurrence and something I’ve experienced too. It’s really hard to go through something so scary and not be given any support and have to try find it yourself.

Thank you for sharing your story with this community.. we all understand you and what you’ve been through. The Encephalitis Society are always here for you and you can get support here: encephalitis.info/support

Hannah’s story might be helpful to listen to: youtu.be/UuW9xrK3s18(Not working as expected?)

[Remos in reply to Ocean96]

Thank you for your response and for sending this video which I listened to earlier today. I hope I can make steady progress in the way Hannah has done. It’s all very difficult for me, I seem to be existing rather than living at the moment but I hope things will get better for me in the way they have for other people. These replies help.

[Ocean96]

Hi Remos,

I really resonate with what your saying and I promise you that sharing your story and experience with encephalitis is helping others! You are not alone in feeling this way. I had encephalitis last year and whilst recovering I definitely felt like I was surviving and not living my life. It was incredibly difficult but one thing that always helps me and it’s “Everything passes, this too will pass” and this will pass and the sun will shine again ☀️

I sometimes take day by day, hour by hour. Sometimes I break the day up into 3 parts; morning, afternoon and evening. It seems easier to break it down. I know I have energy in the morning so I have a shower then, I know I’m tired in the afternoon so I go up to bed for a lie down and I know I get a bit lonely in the evenings so I schedule a FaceTime or a phone call with a friend. When I break my day down it seems less hard and I know I can do it.

Other little things that help me on a daily basis is

- Journaling: I like to journal when upset so I can let everything out!

- Fresh air: a small walk or sitting in my back garden for a few minutes a day

- Treats: my favourite takeaway at the end of the week- a well done to me for getting through the week!

Hope that helps

[Remos]

Thank you for your thoughtful and insightful response. It’s made me feel a bit weepy 😥. The worst thing for me is that no one seems to really understand how I feel, they never seem to “get it” (not even the doctors!). It’s probably not their fault it’s just difficult for me to explain. This is why this forum is so helpful. Thank you for sharing your experiences (which seem similar to mine.) and for explaining what works for you in helping you get through each day. This is exactly what I need to hear. Thank you. 🙏

[Ocean96]

Aw I’m so glad my sharing helped you feel understood and less alone!

I completely agree.. if you didn’t have encephalitis it’s very hard to understand how it feels and what life is like post-encephalitis! We all understand you and you don’t even have to explain because we get it!

[Ocean96]

Hi Remos,

All the symptoms you mentioned such as dizziness, detachment, headaches and fatigue are all things I've experienced and I would say most people who have encephalitis have experienced. So you are not in your own in this by any means and you have come to the right place! I definitely find listening to others really helpful - youtu.be/igQsGWMD1ZM(Not working as expected?)

Things will get better and thank you for sharing!

[Remos in reply to Ocean96]

Hi Ocean96,

Thanks for your response. So reassuring to know I’m not on my own with this. Thank you also for attaching the video of Tom & Toni’s story. Hearing other peoples stories and looking for the similarities are always helpful to me. Although I always find what happened to people in the beginning quite unsettling as reminds me of what happened to me and what I went through.

Anyway, I always find your posts informative and comforting so thank you.