Diagnosed in April 2021 with hsv encephalitis viral. Discharged after 4 weeks recovery stage now . Complete nightmare as one pain goes away another comes along . Never thought I’d say I would get sick of sleeping so much, and the headaches apparently are normal after ABInjury
Hsv encephalitis : Diagnosed in April... - Encephalitis Inte...
Hsv encephalitis
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Heavychunky1
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I’m so sorry you’re going through this. Encephalitis is such a devastating illness. I think sleeping so much is a fairly common theme when first recovering. Wishing you all the best as you continue to heal.
EncephalitisSupportAdministrator
Hi Heavychunky1,
Thank you for reaching out to the encephalitis team. We are sorry to hear that you have been affected by encephalitis. Recovery from encephalitis may take time, it is not uncommon for problems to present more at home as you try to get back to normal life. Each person is different when it comes to recovering from my encephalitis. Patience is key, give your body enough time to recover. Here is a fact sheet with information about encephalitis after-effects, recovery and rehabilitation: encephalitis encephalitis.info/encephali...
The Encephalitis Society facilitates peer-to-peer support virtual gatherings, were encephalitis survivors share their lived experiences. Other people’s stories can provide hope that there is life after encephalitis, by providing tips about different ways of coping and finding meaning in the experience.
Finally, you are not alone, the Encephalitis Society's support team are here for you. Please do not hesitate to reach out to us for support at support@encephalitis.info we're always happy to help.
So sorry for you being at the start of this journey. I’m nearly 3 years on from hsv encephalitis and I thought I just got over it like bad flu. Not so. But honestly everything does improve. Slowly, sometimes with slips back or new issues as your brain and body heal. I’m not sure any of us survivors goes back to ‘normal’ but I’ve learnt patience, tolerance for myself and others and sometimes just to live through rough patches. Good luck.
I thought it was the flu when I started to get symptoms , was floored within 25 minutes of getting home from work. Sick of all these silly little pains and the headaches that occur every day caused by nerve damage apparently, it also doesn’t help when you google things makes the stress worse most of my friends know and all that’s left of family know but sometimes it feels like they don’t really understand some things like I am forgetting silly little things or putting something down and forgetting where it is same with pain killers did I or didn’t I take them situation, roll on if I can get back to normal kind of me and life if it’s at all possible
I was lucky, I don’t actually remember much of the first couple of months except the exhaustion and headaches and my eyesight was so affected I couldn’t check google till about three months later which was a very good thing. I still forget whether I took my pills at times or put the milk in the cup cupboard but I’ve learnt to laugh at myself now. My husband says he sympathised but really couldn’t understand what was happening to me so all friend and family can do is be patient. You will feel better and the roller coaster emotions will slow right down. Honest. Hang on in there. And as I say a different and in some ways better normal life does return.
Hello Heavychunky1,
Indeed your recovery has just begun. The first year was very challenging for me, as well. Many changes occurred and they continue to do so. The good news is that it is likely you will improve the most during this first year. It can be VERY aggravating, though.
I did some "goofy" things during the first year. I also forgot where I left things, and one time I left my cell phone in a shopping cart. Thankfully, someone turned it in to the customer service desk.
When making coffee, I would put the ground coffee in my cup, and the sugar in the coffee maker filter basket, instead of the other way around.
I was overly emotional a lot. Never in an angry way, though. The beauty of certain music would drive me to tears, which is something that would never happen before.
I am pleased to say that I no longer do these things. It took time, and I had to allow for more patience with myself!
I actually found the Encephalitis Society website while I was still in the hospital and I am glad that I did. There is a wealth of helpful information here, and some great folks to talk to. It's great to know that one is not alone in this unfortunate journey.
Here's hoping that your recovery will go as well as you wish it to!
Hello Heavychunky1.From a fellow HSV encephalitis survivor here are some words of wisdom (I think)
I am now 18 months post encephalitis so have been where you are now and truly get it. The tiredness is next level, never experienced anything like it.
Tiredness - rest rest rest! I know I definitely didn't rest enough and as a result hit burn out far too frequently. Build up things little by little. Listen to your body. I recommend some mindfulness or meditation. I use the insight timer app. Helps to really rest yourself.
Sleep - my tiredness often resulted from not enough sleep at night. I struggled with getting good enough sleep. I resisted help at first but soon submitted. 3 months on sleeping tablets helped get me into a good sleep pattern.
Headaches - yup they are standard with an ABI. Mine were like my head was being squeezed in a vice. Headaches often got worse when I was doing too much. Was my warning signal I needed to rest. Take pain relief, relaxation techniques and talk with GP or neurologist. I went on preventative headache medication for a short while.
Mental health - it's a traumatic life experience. I didn't get any help for 6 months and then due to covid it was all virtual. But if you need to talk to someone find a good psychotherapist with experience of illnesses. It helps.
It is a slow race. Some days you'll feel like you are going backwards. Some days you'll feel like you won't ever be you again. Trust me, it does improve. You are still very early on so be very kind and gentle with yourself.
Hi, think I may be trying to rush things to quick, sleep wise I don’t have an issue with can usually sleep for a good 14 hours . Get up and half hour later it’s like my body is saying get back to sleep, the headaches consistency like a sharp jolting pains every so often ranging from back of head side of head and top with forehead and sensitivity to lights , think you are right , it’s going to be the long road out of this, I just need to stop reading google and over stressing more so when it goes on about relapses and mortality rates which doesn’t help the mind
Most definitely avoid Google. You'll find from being in this forum that everyone is different. It's such a variable illness with different outcomes for us all.I got PTSD from it and health anxiety really bad. Living in a pandemic did not help.
Look at your recovery as a day by day thing. Every sunrise is a sign you are awake and alive. Every sunset another day lived. I got so wrapped up in goals and aiming for dates that I just got disappointed and frustrated with myself. As soon as I took it back to one step at a time I noticed the small things. Things weren't such a struggle. I'd forget something but be able to chuckle about it instead of cry.
I think my problem to start with was not a lot of information or many details were told to me buy the hospital. Then trying to get any form of genuine info is like a a puzzle then you come across sites like this which helps a lot. Every new niggle of pain puts the head into overdrive , everyone keeps saying I’m trying to hard but I don’t think I am , I find it hard as I just want to be able to take my 11 year old daughter to the park which is 5 min walk. All I really thought about in hospital was her and that she nearly lost her dad , she understands what happened to me but was a conversation I struggled with
Totally. I was the same. Even when the consultant was explaining to my husband how bad my brain MRI was there was no support offered. Nothing on discharge. I had to get my GP to refer me to neurologist and ENT as I have hearing loss now in my right ear and lost some sight in my right eye. Hospital just treated the encephalitis but not all the stuff you get left with.Thankfully I had a friend who found the encephalitis society who sent me lots of supportive information and the kids comic for my son. I agree it's hard.
When I was discharged I could barely walk to the end of the road. 3 mins would knacker me. I'd get the shakes and sometimes vomit and then sleep.
I'm over on Instagram and I often post about my journey with Encephalitis. There's a load of story highlights documenting those first few months.
Finding others who have had it and are further along than you helps I think. Gives you hope.
Keep talking
Have to agree with you on that information from hospital regarding this was very little even when they were saying we are going to do a lumber puncture , could have at least told me what it was . Would have helped , although support from other hospital departments since discharge has been really good . Don’t think I could cope with any more needles
I was too out of it to remember the lumbar puncture. My husband had to consent for me as I was too confused to understand. But agree good care is explaining what you are doing. I didn't even get told how long it would take to recover. Just sent home. Was when I saw the neurologist who told me look at 12-18 months for this. I ended up taking 14 months off of work.
I got more information from the night nurses, work for me will be a long way away since it’s a driving job and all the paperwork that goes with that about my licence , when I read my discharge I discovered I have a liver cyst as well no one said anything about that, had my rights taken off at one point but were put back on a few weeks later . Had no idea at least the hospital food has improved over time
One of the hardest things with encephalitis is to measure your progress. You will improve faster than you think - and can remember. So I recommend that you and your family document your recovery with pictures and videos. It helps you later understanding how far you have come. It’s a rough ride but you are nor alone.
Measuring progress has been an issue for me also as I've recovered from AE over the past 2 years. When I was discharged from the hospital they gave me an iPad with some "brain games" loaded on it. Some of these were helpful because I could track my progress by with objective scores. One of the best parts of some of these apps is where you can compare your score to other people in your age group. It was especially helpful to see me scoring above others in my age group and to see my scores continuing to improve!
It is a long old road and sleep/rest time is very important! My fiancé was very good at documenting my time in hospital and I also kept a diary at times that I was well enough! Even looking at photos/videos of me 6 months ago I can’t believe how ill I was- never mind about time I actually spent in hospital! There are some incredible NHS workers and I was lucky enough to get private rehab once I returned home! The encephalitis society are fantastic- I’d recommend joining their zoom calls as a point to ‘meet’ other sufferers ☺️
