General questions about Encephalitis

[aruiz899]

My father was diagnosed with Herpes-Simplex Encephalitis in March 2020. He was diagnosed 6 days after the first symptoms showed. Treatment in hospital lasted for 3 weeks.

Ever since he was diagnosed 8 months ago, my dad has had issues with short-term memories. He tends to forget pretty much everything after every few minutes. There have also been changes in his emotional behavior, sometimes he gets emotional easily or gets anger outbursts, it certainly hasn't been easily for the rest of the family.

Though the memory problems have barely improved, if at all, there have been 4/5 instances since diagnosis that my dad vaguely seems to remember. For example a birth of a family member or the recent deaths of a friend of his and a family member. At times he seems to remember where he was during these events, be it a week after the instance of days. When we question it, he vaguely remembers it and tells us how it was.

I just have a few questions after reading some very relatable posts online, be it others' stories or articles. We are aware that full recovery from encephalitis isn't likely, and that in a lot of cases the after-effects such as memories are permanent. But I was wondering whether there have been any cases where someone who was diagnosed with encephalitis effects similar to my father's, eventually had their memory improved, be it short-term or long-term. It can be comforting clinging to a little hope, but we're aware that it's not always possible.

And also the emotional state, where those with the condition seem to get easily upset or angry, has that improved for any of you.

If so when did you begin to see bigger changes in memory and emotion?

Thanks

[Paula-38]

Hi aruiz899,

I also have had Herpes Simplex Encephalitis way back in 1977, as a 1 year old . I certainly had various emotional changes throughout my life at different times of my life.

There waa a time when I used to have anger outbursts and/or get easily angry but it's bren years since I had them so I no longer hav.e

Its been some years since I experienced them. However I still suffer from anger though, but I take myself off to bed to do my deep breathing exercises to release the anger rather than 'let off steam' and writing down what triggered it off to "take the weight off my mind" because otherwise I find myself analysing too much over the situation. Maybe you could try one of my suggestions if it helps .

It doesn't take much for me set my anxiety /panic attacks off more so than getting upset. I totally sympathize and empathize on SOME things.

I think there are the odd things like following a storyline on TV, missing the plot, unfamiliar places where there are no landmarks I would get lost, I am no good with names of streets but I am better with landmarks, and finally recognizing unfamiliar faces or if someone has changed their appearance I have to think twice and have a second look. But I would soon revognize them when they speak though! Doesn't that sound a bit weird? It certainly was not easy for my family.

I record TV programmes and sometimes pause/rewind them.

I think recovery is different for everyone because no two people have the same outcome. Some people may not make a full recovery, but for othersrecovery is a long GRADUAL process, with the right help at the right .

Please feel free to read ALL my posts and/or to ask me any questions anytime.

[aruiz899 in reply to Paula-38]

Hi Paula-38, thanks for your reply. I hope you're doing well. It must have been difficult for you as you had the condition at a very young age. Your suggestions seem very helpful and I'll be looking forward to trying them out; so thank you for that aswell.

I understand no two people with encephalitis have the same outcome, and I also notice it takes years and years for some individuals to get better.

As my father was diagnosed just days after the first symptoms, I initially thought his recovery would come at a faster rate as he was given treatment quickly and was treated for three weeks. Unfortunately it's been almost a year and there's not been any noticeable improvement. The biggest problem is his memory, as he has no recollection of what he said or does after a couple of minutes, so repeating things is very common.

How would you compare your short-term and long-term memory now compared to years ago? Was there a time you would also forget everything after a few minutes? And is that still an occurrence now?

[Paula-38 in reply to aruiz899]

Aww. I feel so sorry for your poor father, its still only early days yet even though it feels like much longer. I am glad that he got an early diagnosis and was treated for half the time that my Dad has told me I was in hospital.

I didn't start improving until I was at least 10 or 11 to be honest and from that point on, the cognitive and emotional skills I should have had I didn't have so as a teenager they started showing more. I did suffer from severe paranoia since I first started talking but its not as bad now as it was but it's enough though.

I understand that recllection and repeating things is very common. 😊.

But I personally have never had any trouble with recollection which makes me feel guilty to be honest when I read about poor people suffering from these problems. It has always been and still is the opposite of your father's and other guys on here my heart goes out to EVERYONE who suffers from ALL types of memory problems 👃❤

I don't know whether I am the only one here who doesn't suffer the same after-effect?

But I think your father is in need of a lot of help by the sounds of it . I will have a look to see what help is available and what might benefit him on your behalf as a volunteer. Would you like me to look into it for you aruiz899? I am more than happy to help you anytime.

Hope this helps.

[aruiz899 in reply to Paula-38]

Hi Paula. Thanks again for answering my questions. It seems like you and my father have had some different after effects of Encephalitis.

My father was referred to an occupational therapist who has recommended techniques and tips for around the household to help make some things easier for memory. What else could he benefit from?

[Paula-38 in reply to aruiz899]

Would you like me to have a look and I will get back to you tomorrow?

[aruiz899 in reply to Paula-38]

Yes please, thank you for your time and help.

[Paula-38 in reply to aruiz899]

I will do . You are so welcome anytime. Thats what I am here for -to help people if they need it. Please let EVERYONE ELSE here know that I will do the same for them if they wish. Say to them that all they have to do is ask me anytime. Just leave it to me. I like helping people its always been in my nature. 😊

See you tomorrow.

[Paula-38 in reply to Paula-38]

Sorry for the late reply, but if I watch a TV programme I have never been able to remember much of the plot, so I record them so I can pause/rewind them, and if I'I'm interrupted when I'I'm speaking I will forger what zi was going to say it'it's to do with being distracted the ability to kind of multi-multi-task in my head which I'I'I'm've never been good at, because I also have a short attention span. They called mine delayed memory linked to my slower processing speed. I'I'm on the very lowest end of the scale.

Paula-Paula-38

[Paula-38 in reply to aruiz899]

Sorry or the delay in replying . I think that things like pictures around the home, show him fanily photographs;making to do' lists out, and as Jensibel said a diary, calendar etc. Hope this helps.

[aruiz899 in reply to Paula-38]

I'm sorry about the late response. I've been busy for the last 2 weeks and haven't had the time to check the website.

Your suggestions are very helpful, however my father does not have many long-term memory issues from over 2-3 years ago. He recognises almost all people he meets, but for sure all of our family members. He has a calendar which he doesn't use and he doesn't really do much when he's not at work anyway.

[Jensibel]

My memory continued to improve for the first two years after my Encephalitis (in 2005). After that however it just plateaued, getting no better or no worse either.

However, those two years gave me and my family the time to experiment with memory joggers for me. The strategies that worked for me was using my mobile phone to set alarm reminders, keeping a personal written diary, and having a house white-board & calendar for notes & planning.

[aruiz899 in reply to Jensibel]

Thanks for the tips. Were your memory problems short or long term? And how long did it take for you to start seeing changes?

[Jensibel in reply to aruiz899]

It was my short term memory that caused problems. Day by day couldn't remember if I'd eaten lunch yet, the route to Tesco's, the last person who'd phoned me etc etc,

[aruiz899 in reply to Jensibel]

Thanks for your answer. Compared to the first 2 years how is your memory now? I understand if hadn't improved after the 2 years but are you able to remember now what you ate in the morning and what you did an hour ago and such? After how long do you tend to forget things?

[Archer6]

Hi aruiz899, I was hospitalized for 2 months in 2018 for autoimmune encephalitis. Last month was the 2-year anniversary of returning from the hospital. I still have short term and long term memory problems. My neurologist told me that for a while I “could not create memories”, so I don’t expect some of those to ever be available. My short term memory has improved. I keep a lot of notes about what I do every day including meals and routine things. I started doing that because I would forget if I had just eaten, brushed my teeth or whatever. Sometimes I would do the same thing over and over again until my wife stopped me because I didn’t remember I had just done it. I keep notes on paper and on my iPhone so if I am going to do something I can look and check whether it is already marked as done.

Over the past 2 years my short term memory has improved a lot. I still take notes and mark things down but I almost always remember that I had done the task before seeing it completed on my list. The improvement was gradual, sometimes VERY gradual so it was difficult to see. My notes show that it was about a year before I could see some significant improvement.

Its evening for me but I can tell you what I had today for dinner, lunch, and breakfast. A year ago I could not do that.

I have had problems with emotions too. It feels like emotions are magnified and more intense than before I was sick. Even though that has improved, I am still more emotional than I was before. Watching a sad scene on TV makes me cry when before it wouldn’t have affected me that much. I don’t get angry but I get very frustrated, anxious and depressed. Is that because of the encephalitis? Or because I lost my house and my job while being sick? Or because I have PTSD from being ill and losing memories? Or because of the stress of a worldwide pandemic? All the above!

I feel that I am still improving. Hearing my wife tell me that she sees some improvement helps immensely. I’d love it if my kids also told me that!

I hope this helps. Best wishes to your father in his continued recovery. A positive outlook for continued recovery will help a lot.

[aruiz899 in reply to Archer6]

Hi Archer6. Thank you very much for sharing your experience and your story post diagnosis. I'm glad to see you're doing much better and hope you nothing but good health. Your words have been very comforting as a lot of what you have said is what my family can relate to, and we feel hopeful that there might be a chance of improvement as it has been very difficult. I hope your family is well and are happy too.

I just have a few questions based on what you've told me regarding improvements and management and would really appreciate it if you could briefly answer those.

At what point did you start to check your notebook regularly? Is it something your wife would remind you to do, and when you did have a lot of short term memory problems, did she also remind you to write down what you had just done? I have tried this with my father but considering the rest of the family are students and employed it can be hard telling him to write down something right after he has done it. So did it take you a while for you to regularly check your notebook?

It's very good to hear you are able to remember things now despite your notebook. Is that a regular thing or a rare occurrence?

Finally, considering your short term memory has improved and you remember what you did on the day it means you are making new memories. Does this mean that you are able to remember what you ate on the day of your answer a week later to? Or does that seem to end up forgotten. And is this also the same for conversations you had earlier in the day?

Thank you once again.

[Archer6 in reply to aruiz899]

Hi aruiz, sorry for not replying sooner. The Thanksgiving holiday took all of my attention and wiped me out... but I remembered some tricks I had previously used when cooking the holiday food. It felt good to feel confident in what I was doing and making the traditional huge mess in the kitchen!

Memory management has been an evolving process. My wife would remind me to write things down, but I had trouble finding my notes and would randomly miss writing down some things. I started checking my notes regularly after about 1 year. At first, notes were a chore but I tried to focus more on todos and accomplishments. I set up my desk to encourage me to do things systematically, Every morning I sit down at my desk and on top I see my notebook with today's page with a list of todo tasks One of the first tasks is to start a list for tomorrow with the usual daily activities ready to be marked as done.

I try to make it as automatic as possible. All I really need to remember is to sit down at my desk. Once there I see the open notepad and my note to myself.

I don't remember what I ate a week ago, but I probably couldn't do that before unless it was a special occasion or something. Everyone's memory is different and declines as we age... how does my memory compare to someone else in my age group? I wonder about that often, Overall I feel my memory has improved significantly and still keeps improving. At night I review my notes for the day and make sure my list for the next day is ready. Today's notes are familiar, I remember most of the events, and I could skip the review but it feels comforting to go over the notes and relive the experiences of the day. What made me smile? What accomplishments did I have? I try to look positively and focus on the successes.

I think doing this review helps to make the memories more solid, so I also do a review on the weekend of the week before. Another improvement has been remembering conversations. It seems that if I forget someone telling me something, they sometimes take it personally as if I wasn't paying attention or didn't think they were important. This is one of the most frustrating experiences since I give everyone 100% of my attention when they are talking with me. I want to remember every detail! But sometimes my memory fails me and I just don't remember. Fortunately that has been happening less and less. Again I try to keep positive and focus on the things I do remember.

Hope this helps

[alpappy]

I had NMDA encepahlits in 2017 I still have memory issues I can go for a month or so and its all ok but nay change in my sleep patten(or amount) if even a flu jab brings on a week of memory loss My long term memory is ok but I have big holes in my life and in bad weeks dont remember a thing I have been told to try mild dose of anti epileptic medication Hope that helps

Dr Alan Papert NZ

[aruiz899]

Hello alpappy. Thanks for your answer. I hope you're doing better since your diagnosis and that your health improves.

[heidichanel]

I'm sorry to hear about your dad.

My little brother (21) is in the hospital now for HSE. He has 9-ish days left on the Acyclovir and to me seems to be doing well, his memory is wonky, small things like forgetting if he completely finished his meal or not. But he was texting me last night and sent me a song that he found weeks ago and said at the time he wasn't sure I'd like it etc. and sounds (relatively) normal with a sense of humour.

I'm wondering how your dad is now? I just found this forum and I'm looking for support as my mom is inconsolable and it's been hard for me, but seeing other people's road to recovery is helping me. I'm 23, it's been hard.

[jujumello82]

My boyfriend had hse and autoimmune encephalitis all In the past 4 months. We still don’t know how much he remembers or not. But For sure he will have memory issues but the doctors did give him meds for his anger outburst. It did help a lot, the only thing is that made him kind of numb...not much emotion at all. Hope that helps!