Covid vaccines for encephalitis survivors

[HSE_Survivor]

I know we all have a right to make our own decisions, but my nightmare experience with Covid means I think vaccinations are important for encephalitis survivors .

I had Covid in 2020, before the vaccines were available . I developed a severe cough that made my chest so tight that I couldn’t leave my house . The symptoms lasted for months and I had to be prescribed steroids and antibiotics .

I started having seizures again, and when I had 5 seizures in one day I was admitted to hospital where I lost the ability to speak and write . Tests showed I didn’t have encephalitis, but Covid had affected the area of my brain left damaged by the HSE virus in 2013. Thankfully after three weeks in hospital my speech returned. I was allowed to go home and was advised by my consultant not to work until vaccines had become available .

I had Covid again in 2021 after I’d had the vaccine, but this time there was a huge difference in the severity of my symptoms, as I had a mild cough lasting less than a week and no seizures .

I would say to any encephalitis survivor to definitely take the vaccine and boosters if they are offered to them . The Covid episode in 2020 has left me with increased fatigue levels so I can no longer work. I wouldn’t wish anyone to have that experience .

[Paula-38]

Hi HSE_Survivor,

I'm so so sorry to hear that you had Covid before the vaccines came out and your symptoms lasted for months and the fact it gave you seizures and it affected the same part of your brain that encephalitis damaged, also your severe neurofatigue too!. Oh my goodness - that sounds really frightening!

I believe if someone has had encephalitis within the first 10 years I believe they might have a weaker immune sysyem than myself and anyone else who had it over 40 years ago.

I had "what I now know was the HSE virus" the day after my first birthday and I had Status Epilepticus at the same time. Luckily Covid wasn't around when I "used to have" seizures as a kid but if at the time I picked a virus up it used to put me in hospital. I haven't had one for about 28 years approaching year 29 next year. I have had all the jabs I was offered and I'm up-to -date with them now and I still haven't had Covid yet.

My biggest after effect is profound obsessive compulsive disorder - OCD it's so disabling that I'm housebound with it.

Unlike most of you here where E has changed your life I'm really sorry about that, but this has not been the case for me. If I had have known a life pre - encephalitis - only then would I have said I was a survivor, so because that's what I've never had then no I'm not.

Hope I have helped you a little bit (even I can't empathise much) but I do sympathise a lot!

Paula-38

[HSE_Survivor in reply to Paula-38]

Thanks for your lovely reply, Paula. It genuinely means a lot.

Being housebound with OCD cannot be easy, as I know other people can struggle to understand the difficulties post-encephalitis when we physically look well . I am so glad that we have our Facebook group to share our experiences like this .

It is priceless to be able to connect with others like you, who understand there are serious long term effects . Your kind words definitely help. 😊

[Gandalf2]

Hi HSE, thank you for your post. I had Covid and pneumonia together and recovered from both with IV anti-biotics. The pneumonia and its after effects were the hardest part. I'm 72. I have not been vaxxed.

Many people were forced to take it or lose their livelihood and reputation. There are reasons not to take the vaxx - I guess people can find these and make up their own minds.

I'm a HE sufferer, still on medication and realistically it is inevitable I will suffer repeated bacterial infections for the rest of my life, that's how it is with immune deficiency. I've been hospitalized five times this year with chest infections and UTIs - Good luck with everything. G2

[HSE_Survivor in reply to Gandalf2]

Thanks for the reply, Gandalf2. I can’t imagine how hard the combination of Covid and pneumonia and then repeated hospitalisations have been for you.

You’re right, people need to be allowed to make up their own minds, and I’m happy to respect other people’s opinion on here . I’m only bossy at home where my poor husband has to put up with me reminding him to get a Covid booster jab . 😊

It’s lovely to be able to connect with other people on here. I hope 2023 is a little easier for you, with less hospitalisation.