HSV 1

[Majaa]

Hello. I need some advice. My brother was diagnosed with HSV 1 Encephalitis on January 12. And on January 9 he had an epi attack. He was in the hospital for a month, he was treated with acyclovir. The last lumbar puncture was negative for the virus. He has been receiving home treatment since February 9, but he is still disoriented, confused and has hallucinations, as well as memory loss. Is this a normal course of the disease, will it get better after a certain time? Or are these all permanent consequences for a lifetime?

[kitnkaboodle]

I’m sorry about your brother. I can assure you that all of those issues (and more) are expected with E. Recovery from E should be measured in months and years, not days or weeks. Your brother *will* improve, but it will probably be a couple years before the extent of his acquired brain injury and sequelae will be revealed and fully understood. I know it is tough, but be patient, and, when the time comes (when the acute phase is over), let your brother know it is okay to be patient with himself.

How old are you both? I hope you two have more family support. My brother and sister were my primary caregivers for the first three years after E. It took a big toll on them; remember to care for yourself as well.

❤️

Kit

[Majaa in reply to kitnkaboodle]

Thank you. ❤️He is 29, I am 35. We have the support of the family, but not the community, little is known about E, and little available information in our language. That's why any advice is welcome.

[kitnkaboodle in reply to Majaa]

I was 24 when I got sick; my siblings who cared for me were 23 and 26 at the start of it all. To be struck down by E in the prime of life is a special kind of nightmare.

Happy to try to answer any other questions as they come up.

[Majaa in reply to kitnkaboodle]

Did you have hallucinations, if so, when did they start to lessen or disappear? Somehow it is the most difficult, when instead of his family he sees other people and starts to be aggressive.

[kitnkaboodle in reply to Majaa]

Yeah, I had some delusions and hallucinations whilst in hospital. I had brainstem encephalitis, meningitis, etc. and none of it was caused by HSV1. I’ve heard HSV E causes a lot of hallucinations and aggression because the HSV targets the frontal and temporal lobes and the limbic system more so.

If he continues to deteriorate even after clear spinal taps and acyclovir, check for anti-NMDA receptor autoimmune encephalitis. Sometimes NMDA follows HSV.

encephalitis.info/types-of-...

[cg511cg in reply to Majaa]

Recnik - regarding hallucinations, my husband got Encephalitis H1 May 2023 when he was 68 and did suffer from hallucinations. The good news is that they subsided around September. As he got better, he even started recognizing them for what they were! He would say, 'I think I'm having another Star Trek reality.' And now he can even can look back on those hallucinations.If you haven't already read the 'Letter from My Brain' on this web site, please do so! It's a real eye-opener.

Everyone's recovery is different, but the common thread for healing is rest and time. Hang in there, he will improve, but it's just slow-going.

[Paula-38]

Hi Recnik,

I had the same.e type of encephalitis as your brother the day after my first birthday. My dad informed me that I was in hospital for 6 weeks, while I was also diagnosed with Status Epilepticus at the same time. I believe I was treated with antibiotics, I also had a lumbar puncture.

I'm not sure if Acyclovir was out in those days or not. I can ask my dad if he remembers anyone mentioning Acyclovir though. Hmm? If your brother is having seizures that in itself can also make him confused. I don't think I have had memory loss or confusion unless when I was little, I used to have the big convulsive seizures one after the other whenever I had a high temperature, and during that time I used to feel a bit like thar but (without the hallucinations) if that makes sense. But when I was well, I didn't feel confused or have memory loss only during or immediately after convulsions I guess because I was unconscious but no other time. Oh I did have delayed memory in the sense of being able to follow a storyline on TV, but in general my memory is excellent so people keep telling me.

Enough about me for now, but I thought I'd share my diagnosis and what I've been told what symptoms I had at the time.

My Story is on the Encephalitis International website under Your Stories then scroll down until you come to Paula's story.

I hope that helps a bit.

Paula-38

[JonStitch59]

Sorry to hear about your Brother very similar happened to me HSV 1 about 9 yrs ago, I was in Hospital for 2 weeks that i can't remember much about but was told i had a Lumbar puncture to diagnose what was wrong with me, I was also put on Aciclovir i eventually got signed off work due to capability with help from a occupational therapist who explained to my boss what was wrong with me, I started having seizures about 3 yrs later which i am on medication for and only have one occasionally, My current memory is terrible & seems to be getting worse i see people i recognise but cant remember there name or how i know them until i am told but people I've known for a long time going back many years I've no problems with, My life has changed after working all my life in the Motor Trade & now not being able to drive

[HSE_Survivor]

Hi Recnik. This is very early days for your brother. We were told it takes two years after diagnosis to see what level of brain recovery can be achieved; everyone is different . My memory loss in the first year was dreadful, as I struggled to recall to do basics like turning taps off. I had hallucinations like thinking my dog was under the hospital bed. I didn’t recognise work friends, and I forgot where I was in my best friend’s house . Things did improve hugely for me in the second year, when I regained my independence .

I know how hard this must be for you . My husband and Dad had a tough time looking after me. Do remember to take care of yourself, too.