First post on here and Not really sure where to start! So I suppose hello đ!
So my storyâŚâŚback in May 2020 I woke with a massive headache one that you know is not normal and one I had never suffered from before! I took pain killers and nothing touched the sides of it. As we were on the middle of the covid pandemic I was unable to see my GP and advised to attend A&E.
I did as I was told and diagnosed with a migraine sent home with some pills. Needless to say this didnât help and again contacted to the GP and told to stay with it and take the pills.
Fast forward 24 hours my wife is calling for an ambulance as I was confused and complaining of head pain. By the time I was in the ambulance I didnât know where is was or remember anything until a week later.
In the 5 days that passed I was taken to ICU put into a coma and diagnosed with encephalitis. Upon waking I spent a further few days in ICU then another month on the ward with IV anti viral. I have had 3 lumber punches and numerous tests but the drs have never been able to identify the which virus caused the encephalitis.
In the 2 years that have passed I feel very fortunate in that I have not suffered any lasting issues and have been able to return to work something I know some people have not been as lucky with.
Being a man in his 40s I admit I struggle to talk about certain things this being one of them. My wife who is my rock tries her best to understand and my friends have been great as well but trying to talk about nearly passing and what happened is something I struggle to comprehend and articulate let alone trying to make someone else understand it.
Since also being discharged from the hospital I have not had any further follow ups maybe due to how well I recovered. And donât get me wrong physically and externally you would not think there is anything wrong or had been wrong, but mentally Iâm not sure! My wife has noticed I am not as good in social settings and personally I donât feel as âsharpâ as I used to and can get quite snippy/angry and little things some times and generally do feel low in myself l.
So this has led me here! I am looking to hopefully meet and talk with others with similar experiences.
Thanks for taking the time to read this
Written by
Mattn78
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You and I have some similarities: onset in 2020, unknown cause, and others not quite understanding, but that might be the end of the list; I had to quit school and canât do much. Iâm so glad to hear youâve made an awesome physical recovery. But, yes, E affects our mental states as well. Almost all of us donât or wonât return to pre-E state completely. Thatâs okay. Weâre still alive, and thereâs goodness in any kind of life we can manage.
Youâve come to the right place to chat. Iâm sure a bunch of guys on here including Remos , OldGnome , Gandalf2 , Archer6 , The_Bass would welcome you into their E menâs club. Iâm pretty sure Remos actually has one in real life! Feel free to ask us all any questions.
Hello Mattn78 and welcome to our family of folks who have gotten "the big E"!
Your story is similar to mine; I was disoriented/confused and my then-fiancee had to call an ambulance to get me to the hospital. I ended up spending 3 days in a coma, but was not induced to do so. I had the lumbar punctures, which I have no recollection of, and it was determined that I also suffered from a virus-caused case of meningitis AND encephalitis. They never found out which virus caused it, and they never will.
That's outstanding that you could get back to work!! Myself, I am only able to work for (2) 4-hour shifts per week, and sometimes even that tiny amount is very difficult for me.
My event happened in April 2018, so I am further along, time-wise in my recovery. It doesn't look like I will recover to the point that you have, though, in half the time! đ Oh well, such is life. No two cases of encephalitis are alike and no two people will heal to the same level of completion, or within the same timeframe.
It's great that your wife has stood by you in all of this, and that your friends sound like they have, as well!
To me, it sounds like the lack of follow-up doctors' visits is a concern to you. As someone who's gone through a similar experience, it concerns me, as well. I have regularly scheduled visits with my GP, and Neurological specialists from the hospital.
Perhaps it's time to get on the phone and schedule these visits, especially to go over the concerns you are having. Better yet, if your wife would do this, it will probably happen quicker. When men speak, we are lucky if anyone listens, but when a woman speaks, people had BETTER listen, or else!! đ (This is a bit amusing, but actually true!!)
Well, time for me to get onto something I deem as being important. Welcome once again, and don't be afraid to discuss issues that may be bothering you. We've all been there, and we are all here for each other.
All the best to you and good luck in getting those appointments!!
Welcome to the group no-one wants to be a part of! It is great to be able to share experiences that only other Enc survivors understand.
As you have not had any follow-ups I wonder if you feel as though your experience was almost a dream and kind of not been acknowledged. I also wonder if you have had a chance to speak with anyone with knowledge to process what happened to you. Have you reached out to the Encephalitis Society, they are amazing and can talk & provide information.
I was poorly a few months after you in Dec21, I went to bed and I don't remember too much after that, was taken into hospital for a 7 night stay, and left there with a note stating delirium!!! I think the hospital wanted to sign me out quickly because Christmas was in a day or so. I didn't get my proper diagnosis until I asked for a sick note that stated meningeoencephalitis. The whole hospital/illness thing left me traumatised I think and it is only now that I recognise this.
I too, never found out what the cause of my illness was. That will remain a mystery.
I was signed off from the hospital last week which I am pleased about. I am grateful for how far my recovery has come but I still feel 'misplaced", not quite myself and grapple to try to remember things. I am also struggling with headaches & migraines.
I hope you will be able to share anything that you don't feel able to ordinarily because whatever you are feeling there will always be someone here that can empathise and share their experiences with you.
Welcome to the forum. I was diagnosed with HSV Encephalitis in June last year. It took the hospital quite some time to confirm. At first they thought it was a stroke, then they assumed it must be a tumour. Eventuality after discounting everything else they noticed I was admitted with a temperature and performed 3 lumber punctures. Two of whichâfailedâ and were extremely painful. Eventually concluded it was encephalitis.
So I was in hospital 10 days before I received treatment. Doctors have since commented on how well I am considering the time it took to diagnose. One doctor recently said I must have very good brain health!! Well maybe I did when I went in!!! I was discharged after 5 weeks with no information of what to expect or do.
Since then I have managed to get back to reasonable physical shape but like you I continue to be tormented mentally. I suffer mainly from depression, anxiety, fatigue and pathological crying. I never made it back to work. But as we remind ourselves here - we all survived.
Iâve had (and continue to have) fantastic support from the people on this forum. Only WE, really understand the challenges and circumstances of our situation.
As Kit has alluded to I attend a weekly gathering called âAndyâs Man Clubâ. Itâs attended by men of all ages who suffer from anxiety, depression and other issues. Itâs a safe place for men to talk confidentially and openly about our problems and to offer help and support to each other. Not dissimilar to this forum. Itâs a UK wide operation so you may want to find out where your local event is held - it really helps.
Thank you all so much for the warm welcome to the group and for sharing your experience's it is good to know that there are other people out there with similar circumstances and experience's and to be able to share and talk with you all and who understand what its like and how it feels!
Firstly my apologies for not replying sooner! since posting as OldGnome has said my wife has been on the phone and people are listening she tends to have the affect! I have now had GP visit and discussed everything that has been going on since i have been released from hospital with Post Encephalitis Syndrome being mentioned which very much seems to sum up everything i am experiencing.
We or should i say me also now has some follow up appointments with mental health teams etc to help me with the issues that i am facing at the moment. So i will keep posting on how that goes. My mental state really is up and down in respects of depression, anxiety, nerves but really the main one is my lack of patience and tolerance now, and i just seem to snap or bicker at the smallest things
I would also like to answer some of the thoughts and questions that have been raised as well.
I do count myself and being extremely lucky on my physical recovery and i put this down to having an ambulance crew that recognised the seriousness of the issue and took me straight to St Georges hospital in London, and that the Drs there were able to start the anti viral treatment so quickly.
And yes GreenBamboo it does feel like a dream and something i dont feel like i have processed myself fully as of yet. And no i haven't been offered any follow ups of any sort to speak to anyone on this to help process it but it will be something that i look into with these next appointments. Also no i hadn't yet contacted the Encephalitis Society, i have been soaking up all of the information on their web site and they will be my next point of call.
Thanks Remos and Kit for all your advice as well and will defo look up Andys Man Club as well.
It is interesting to see that some of you also had similar experiences as i did with lumber punches etc unable to determine the type of virus. While i was told in hospital that in a large number of cases they never do determine the virus type however i do wonder if this is anything to do with the Covid 19 Virus and wondered if anyone had similar thoughts on this?
The reason i raise this is that Christmas 2019 before the pandemic officially took hold we spent this time in Cyprus at a hotel with my in-laws. We stayed for a week my in-laws stayed for 2 weeks however when we flew back my father in law became hospitalised with what would now be classed covid. I also a few weeks later had all the symptoms now associated with covid. I have read on line certain articles linking covid with encephalitis but when i have spoken to Drs they just said they didn't know enough about covid to link it.
Any way looking forward to being part of the group and contributing where i can and getting to know you all a little better!
Yes, in about half of E cases, the cause is never determined. And, yes, I've read that COVID can cause E (like any other virus), but I personally don't think much of the connection, at least in my case. Maybe there's a stronger link in your case, but not in mine. Others, particularly my mom and a couple doctors, were adamantly trying to link my case to COVID. Sure, I got sick in October 2020 (the first unvaccinated wave), but I tested negative 8 times in 6 different ways over 4 months. The evidence is weak.
Honestly, at some point, the cause of infectious E doesn't matter. Identifying the virus/pathogen likely doesn't change anything about my (or your) recovery. Yes, it matters early on when trying to get targeted treatments (especially for AE), but not so much anymore. At some point, looking forward in recovery is more important than looking backward to the acute event.
Hi Matt, Very similar story. I ve also got new partner a year ago.All he knows is that I nearly died in 2020.He knows it upsets me so has never asked.I m like you re recovery except if upset I get blinfing headache,can t sleep and after Covid had same symptoms so they put me in hospital on morphine but decided it was Covid headache effected by past E.I m no longer as social and aware of how people reacted when I was ill and pruned my friendship group.Good luck but think the nearly dying thing rocks your world.x
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