I am adult male, 56 years old, and married with kids. I live in Southern California, and I acquired the West Nile Virus from a mosquito bite in September 2023. From there I came down with Viral Encephalitis, and have been struggling badly ever since. I also had nerve damage in both shoulders and neck. Currently, I struggle with memory problems, terrible headaches, sleep disorder, tension in head and neck. I feel hard pressure on my head that makes me feel like i'm not myself. The Psychiatrists, Neurologists, and Therapists have all given up on potential and effective treatment, while telling me that I need to be patient and give it time to heal on its own. I am back at work full time, but its a daily struggle with fatigue and pain. However, working keeps me busy, while just being home alone can be worse. Not sure where I go from here.
Cesar, taking it one day at a time - Encephalitis Inte...
Cesar, taking it one day at a time
Hi Cesar, I'm sorry to hear about your infection. Here's some info on WNV, it seems there is no treatment - just care and support ....
ecdc.europa.eu/en/west-nile...
Less than one per cent may cause West Nile neuroinvasive disease (WNND) that affects the nervous system.
So you may be lucky.
Less than one per cent may cause West Nile neuroinvasive disease (WNND) that affects the nervous system.
I developed auotimmune enc. possibly due to a low thyroid level. Classic enc. symptoms developed - seizures, brain inflammation, hallucinations and others.
Here's more info: medicalnewstoday.com/articl...
I have recovered over the past four years - rest, diet, exercise (mental and physical) plus specific medications. I assume you live at home so may recover there. How it may affect you, your ambitions in life and other aspects will be pretty specific to you. If you have avoided paralysis, blindness then you are off to a good start. I find chronic fatigue, reduced immunity, anxiety and memory problems pretty difficult to deal with.
I assume there is healthcare and some support available near to you. If so you should be in good hands. Let us know you things progress.
Best Wishes, G2.
Hello G2,
Thank you for your input. Unfortunately, I am in that 1%, as the virus impacted the BBB and entered my Central Nervous System. I was in coma twice and nearly passed. Now im just trying to endure the recovery symptoms, which are quite difficult. Doing my best to live my life. No seizures, blindness, paralysis, but horrible headaches, memory loss, anxiety, burning, tension, fatigue. At times, it feels like its getting worse, but im trying to be hopeful.
Take care and good luck.
Cesar
Just jumping in here without much context to ask: How are you back at work? I couldn't imagine doing anything of the sort.
Cesar68 - sorry to hear about your illness. My husband got Encephalitis (HVS1) in May 2023 at the age of 68, so it's been just over a year. I remember when the neurologist told him to get plenty of rest. I thought 'that's it?' 'that's all they can do?' But it turns out they were right! Sleeping is like doing calisthenics for brain and body healing! My husband was lucky in that he was already retired. He experienced debilitating, what he calls 'skull headaches', almost daily. Fatigue and feeling overwhelmed were also pretty much constant. The thing is that it does take time, and it's very hard to wait that out. Celebrate the small things as they happen. My husband's skull headaches finally subsided! He still gets a small one, but not that often and not as bad. Be sure to read 'letter from my brain' that is on this web site. It is very encouraging - my husband at first tried to 'push through the pain' or 'push through the confusion', but then he realized that sleeping was really doing something very helpful for his recovery - after that he didn't feel bad about taking as many naps as he needed!
Hang in there, it takes time. Wishing you the best in your recovery!
Hi Cesar68,
I'm so sorry to hear that. 💔
8 months is still only early days really.
I had Herpes Simplex Encephalitis like cg511cg's husband the day after my first birthday, so I would have been younger than the age if 2 when I was in your position.
I'm just the opposite of most people on this forum.
Like cg51cg's husband, yes I have experienced feeling overwhelmed as an after effect of HSV encephalitis.
Similar to Gandalf2, I have always suffered from some of the same after effects i.e severe anxiety from the age of about 13 paranoia from the age of 3 and chronic Obsessive Compulsive Disorder- OCD for most of my life.
If my OCD were to get itself lost somewhere on it's own I'd have a far better quality of life.
However I'm very fortunate to have an excellent memory, no fatigue or paralysis or migraines or nothing like that. In fact I have the ability to remind people things they've forgotten but they had previously confided in me and I often remind them the things I know about.
The difference between myself and I think everyone on this forum is the fact I didn't have a life pre-encephalitis and I had to learn everything post encephalitis from learning to crawl/walk talk read write etc. It's good that I did have the ability to learn these things at the same age as the average person who never had encephalitis. I'm very fortunate it didn't affect me that way. I didn't have to re-learn anything or have a new normal, just the same normal because I hadn't changed after having had encephalitis which I know can be a life changing condition for many of you,and I'm sorry about that.
I don't think there are many people on here who can see it from my point of view or understand where I'm coming from, but I sympathise and understand where you're coming from even if I can't empathise. I do my best to listen to you E-warriors and I try to help if I can..
Please don't hesitate to ask me any questions anytime. I'm more than willing and happy to help.
Hi Cesar68,
I am sorry to hear about your experience.
Have you come across our website? We have lots of information about Encephalitis on there as well as links to get in touch. We have a support line and email support along with virtual support groups which you can attend on zoom. These allow others who are struggling with loved ones to come together and talk about their experiences
Our website is encephalitis.info
Please do get in touch and we'd be happy to help where we can and put you in touch with others.
Alex
Encephalitis International
