Jennifer shares her experience of herpes simplex virus (HSV) 1 encephalitis 

My brain before and after encephalitis

I noticed during my research of the brain that it is not typical for people to share their medical history, and I never thought I would be in this position. However, the diagnoses I had are interesting and a little rarer than the ordinary. Herpes simplex virus (HSV) 1 encephalitis is rare and if not treated within a few days then it can result in death.

My hope in sharing this story is so that others can get a better grasp on how fragile our brains are, and how important it is to take care of them. I had the privilege of physical therapy for both my brain and body, along with a counsellor who specialised in acquired brain injury.

I assure you that I will not be sharing my stacks of medical records. What I will be sharing is the journey I took to overcome these obstacles. This is all in hopes that it will help others bring their minds, bodies and spirits to a better balance.

Below you will find my prior medical conditions vs me after encephalitis. This information will hopefully give you a better understanding of what our brain controls. I could not stop the virus from entering my brain; however, I have learnt and grown along the journey.

Pre-encephalitis medical conditions:

• Obsessive compulsive disorder/sensitive to Noise: Little obsessive compulsive disorder when stressed and medication to help manage. A genetic trait I inherited!

Other than the above listed I have not had any medical concerns throughout my life. Never even broke a bone and my children popped right out!

Post encephalitis/meningitis medical conditions

• Impaired memory: Short-term memory impairment for recall and recognition. Information processing, executive function.
• Depression symptoms: In the mild range with focus and follow-up.
• Nerve damage: Creating loss in food processing, digestion, damage to nerves causing excessive pain through shoulders, neck, and back.
• Seizures: Currently now controlled with medication.
• Overly tired: My brain wears out faster than most and requires naps to recharge enough to make it through the days.

Some of the medical diagnoses above are easy for others to understand. However, my personality changes and energy levels are not so clear. Prior to this, I was very much known as the go getter in life and never seem to slow down. Now, that is not so much the case. I terribly desire to have back that stamina I had, but that will not happen. However, I feel lucky that I am now a much more patient mother and very much aware of the moment at hand.

My lack of energy is one of my biggest problems. Keeping up with my wild child, Ms. Brooklyn, would be tough for most as it is, let alone someone with a tired brain and body. I explain my tired brain in this way: think of how your brain circuits connect back and forth with each other like a roadway, if that roadway has damage then it would have to reroute, this requires more energy or fuel and takes impulses longer to get there.

Refilling a brain takes a little more than stopping for gas. The only way to refill a brain is to sleep. Often people respond to this and say, “Oh yes we all need reboots”. Then I think ‘oh yes, but my brain requires 10 times more than the average person’. When I push myself too much I pay with complete crashes and sleep for a good 20 hours. This happens on a weekly basis and usually I use my 2 child free evenings to do sleep and reboot. I hate wasting the time but if I don’t, then seizures, brain fog and weakness of my whole body will kick in fast.

My short-term memory has been the most affected and I regularly compare myself to Dory from Finding Nemo or Drew Barrymore from 50 First Dates. So, when I have a conversation with someone I try to focus intently on the person, ask questions and hope that it moves to my long-term memory. If I am tired those moments tend to go right in and back out. Sometimes I hear a story from a friend about an evening we ventured out and I cannot recall any of it. I am not talking memories from years ago but simply a few weeks!

Your brain takes a while to heal when damaged and the process requires an enormous amount of rest. I worked with the neurology department during my original diagnosis and still go in for follow ups on an annual basis. The neurologists informed me that after 18 months I would have a better understanding of where my long-term complications may stand. I am so happy to say at the 4-year mark that I am doing substantially better. In the beginning of the healing process, I could not even remember if I had just cracked an egg a second before. I would sleep 20 plus hours a day while on a permanent IV and stayed bedridden for many months. I have now completely accepted my capabilities post herpes simplex virus encephalitis and understand my body, mind and spirit to an extent I never thought possible.

Here is a mini preview to one of the craziest moments: the name I called myself when I walked into the emergency room. I do not recall driving to the hospital and according to the staff I came in speaking gibberish. I however do remember the 4 doctors standing in front of me and asking my name, according to the doctors I said my name was “Bright sunny star.” Which was obviously not correct! Fortunately, one of the doctors was a customer of the Coffee shop I owned with my mother. He called the shop who then contacted my mother. Her arrival there was the starting point of the diagnosis, and thank goodness because had she not I may not be here today.

Having family, friends and support groups is so important for recovery in anything. Make sure to be there for others as much as possible because you never know when you might need them in return. A big thank you to all my helpers through the journey.

(Story published July 2024)

Find more information on herpes simplex virus encephalitis.

If you wish to speak to anyone following this video, please do get in touch: support@encephalitis.info or call +44(0)1653 699599