Was diagnosed treated and discharged from hospital with Hsv-1 Encephalitis 4 years ago knowing little of the illness, since then i have been trying to get back to a "normal" life but find its always one step forward two steps back and my gp keeps diagnosing me with depression/stress. Recently i lost all feeling/sensation down one side of my body and keep getting strange feelings in my head like theres something warm running down it!! Any help/advice/guidance would be greatly appreciated.
Mark
Hi Mark
Not many GPs know much about it, mine told me he was learning along with me! Then he left the practice and i never see the same one twice.
A lot of these sensations you feel in the early years do tend to subside,
I was in a coma for 3 weeks then spent around 3 weeks in ICU, HDU and the general wards then 6 weeks in rehab.
In rehab they taught me to walk again and i was lucky not to suffer epilepsy and now i think im around the best im going to get.
I used jigsaws, paint by numbers and games on my tablet to refine my motor skills but ive not been able to drive or return to work.
The best advice i can give you is to keep pushing yourself that little bit harder and practice practice practice, that way your brain can rewire quicker.
Janet
Thankyou for your reply and advice, think i maybe push myself too hard at times but my gp did once tell me that i had to get on with my life as the encephalitis had been treated!!
You can get advice from the Encephalitis Society too.
They told me i now have a chronic illness. At first i was in denial, but now i do appreciate that that is true.
The consequences of Encephalitis are with us to stay but in a lot of cases these can be managed. You have to find what tours are and ways of dealing with them.
Over time i found acupuncture helps as does massage or Indian Head massage. I have Reflexology once a month as this benefits me most.
Tai Chi helps with balance.
I had vision therapy for a time and that helped immensely too as i have lost some peripheral vision.
Listen to your body, you know it best.
Janet x
Hi Mark.
Same issue. Unknown encephalitis 10 years ago. Could not speak properly, trouble walking, muscle spasms, confusion etc. A few weeks in hospital.
Discharged with no support or treatment. Extreme headaches, vertigo, fatigue, left side numbness, weird tingling over head. That went on for maybe 4-5 years. Gradually lessening in intensity and with cognitive ability gradually increasing. Although it never returned to normal.
Since then it’s been diagnosed as migraine, anxiety etc. This is the common scenario with encephalopathy. You will find many posts here all saying the same thing. Unfortunately we are a category of brain injury that is marginalised.
What you will find is the the medical profession are not set up to deal with the issues arising from the infection after the patient is discharged.
If you do not have brain damage that can be seen on an MRI then from their point of view there is no issue. It is a science and the will fall back on empirical evidence. What they don’t tell you is that the can only “see” and understand so much.
You are talking about the most complex organ in the body. Basically it’s not known how it works. I eventually got to that point with an unusually candid neurologist. All they can do is keep you safe. Which you most probably are. Especially after all this time.
It’s a scary experience dealing with the sensations after surviving the initial illness. It does not mean you are going to drop dead. You do need to pace yourself how ever. Pushing you too far is not advised. Know when to stop an activity.
Get in contact with the encephalopathy society. Get advice on managing activity and symptoms.
You are not alone.
Thankyou for your reply and all your advice that i will be listening too, the old me used to run plan and manage global supply chains while being a father to 2 kids and a husband to a wife on a few hours sleep and now...... Its just so frustrating, isolation isnt new for me so im struggling to understand gravity of this situation
Who am I now?
Am I still me?
Those questions are common after brain injury.
Wether is has has been acknowledged or not by the medical profession you have suffered a life changing injury. It would be wise to seek psychological help from a trained professional.
I eventually received support after being referred by a neurologist from my local community brain injury clinic. They had a neuropsychologist. Seeing someone regularly will help. Also a specialist in that area can see how you have been effected. You can ask for an assessment too. That way you will have documentation which is always handy.
You need to seek the help, be insistent, no one is going to ring your doorbell and offer it.
Cheers again Dave and now that I know of the Encephalitis Society they have put me in touch with a local agency called Headway who will hopefully be able to assist once the current pandemic is over obvs!! I think my gp's general attitude of" yes you had but its gone now get over it your just depressed or stressed" begun to sink in and i was actually starting to believe it myself up until I had one of my off days which turned into a week of not being able to do much recently.
One positive that has come out of this whole experience is how well i know my brain and how much time we hang out together chilling, and it tells me it needs a wee tweak here and there to stop misfiring and hopefully that what Headway will be able to help me with.
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