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Encephalitis is a type of brain injury causing temporary or permanent changes to a person's life.  This can lead to anger, frustration at the new physical or emotional changes

that a person goes through.

How do you live with this "new normal?"

Tips To Help Live With AE

Tips To Help Live With an Autoimmune Encephalitis

Exercise Or Physical Therapy

According to Mount Sinai School of Medicine (Research and Training Center on Community Integration of Individuals with Traumatic Brain Injury, Dept. of Rehabilitation, Mount Sinai School of Medicine), "People with TBI who exercised had fewer physical, emotional and cognitive complaints and symptoms, such as sleep problems, irritability, forgetting, and being disorganized.Non-exercisers with TBI complained of more cognitive problems or symptoms than did those who exercised, suggesting that exercise may improve abilities such as memory, thinking, and the like." More


As important as exercise is- even more with an AE is getting plenty of rest.

Eating Well and Getting Enough Fluids

This may sound obvious but it is extremely important.

Overstimulative Enviornments

  • Avoid them if possible or limit to small groups. If you must attend make sure to have earplugs, noise canceling headphones, sunglasses if there will be too much lights or flashing lights.

  • Leave uncomfortable social enviornments especially when feeling overwhelmed.

Quiet Time

Sometimes excusing yourself from situations and going to a quiet place can help yourself decompress.

Speaking To A Therapist

You are going through so much emotion, confusion, disability...talking to someone does help. Stress is a big trigger for flares and having someone listen can be helpful.


Try to get as much support as you can from family, friends, support groups. Remember you are NOT ALONE

Feelings of isolation for a patient or caregiver are often terrifying and isolating. If you can reach out to someone or a support group-DO!

Our support groups like many others are valuable places to ask questions, share experiences, share useful tips, and a place to interact with others who understand what you are going through.

Do NOT Overdo it! Taking care of yourself and not overdoing it. Many AE patients only have a certain amount of energy they can allot themselves per day. You cannot do what you used to be able to do and for many of us pacing ourselves or cutting things out of our day is extremely hard to let go of.  

See spoon theory

Warning Signs

Be aware of warning signs or situations that can cause triggers or flares.

Ask for Help

Accept that you may need help from family or friends with somethings you can no longer do. 

  • Driving- If you can't drive... ask for help from a friend or family member, carpooling, cabs, Uber or        Lyft to get yourself places. 

  • Cleaning-if you can afford to do it, hire a a cleaning service or person

  • Cooking- ordering in, getting pre-prepared meals or have groceries or food delivered

  • Prescriptions- some pharmacies will deliver

  • Amazon- or other companies can deliver many household items or services

Participate in social events (if possible)

Group activities such as book clubs, community education/actities, church groups, etc. A great way to prevent isolation and meet new people.



Using technology such as computers, smart phones, iPads, etc. Some cell phone companies have special, affordable plans for people with disabilities or parents of children with disabilities. Keep all of your receipts for anything you purchase for your disability including your monthly bills and internet service may qualify as tax deductible.

Keep chargers with you or portable battery for you device.

  • Reminders- Use alerts, set reminder alarms

  • Researching online

  • Keep a log of symptoms- Logging in symptoms from day to day. It will help you and your      physician understand triggers, reaction to medication and treatments.

  • Notes- Great for logging in notes from a doctors appointment, shopping lists or other

  • Medications- track them and again, set reminders so you don't forget to take them or take them twice!

  • Contacts- do not expect to remember all your contacts- keep them handy especially in an emergency

  • Play games- There are many game apps to help improve cognitive skills (memory, hidden pictures, word puzzles, solitaire, majong, etc.)

  • Kindle or other "e books"

  • Audio books

  • Speech to text apps or programs

  • Use noise cancelling headphones if you are in a noisy environment, it can help filter out the noise. 

  • Oximeter-For those with tachychardia, bradycardia or low oxygen levels, it can attach to your smart device

  • Calendar- Use it on your phone for pretty much everything. Reminders, medications, appointments, etc.

Notes, Notes And More Notes

Keeping notes to remind yourself of important things. Keep them in places you are sure to see them.

Preparing For Our Doctor's Appointments (more info here)

  • Bring someone with you- If possible bring someone with you who can help take notes or help bring important information with you. When AE patients suffer from memory and cognitive issues they can forget imortant information to give to the doctor or to take home.

  • Notes- Take notes of what you are discussing in the doctor's office

  • Records- Bring what you have it is good for the physician to see what your history is- and most likely it's a large folder!

  • Recording- Ask the doctor's permission if they would not mind you recording the conversation on the phone if you are unable to bring someone. 

  • Snacks- Bring snacks and a drink as you are already not feeling well and you do not want to add to the discomfort of being hungary or thirsty.​

Things To Always Have On Hand

  • If you have sensory issues (visual or audio) keep sunglasses, eyeglasses and earplugs on you.​

  • Medications

  • Hand sanitizer (for those on strong immune suppressants).

Blogging Or Keeping A Journal

This is a great way to expres yourself and it gives you a recorded timeline of your life events and symptoms. Reading other like minded bloggers can help as well. The Mighty is a great source.

Neuropsychological Rehabilitation

According to Dr. Jeffrey Kreutzer and Dr. Virginia Powell of Virginia Commonwealth University, "Research reveals that brain injury often affects abilities, behavior, and emotions. Commonly reported symptoms include trouble remembering things, thinking of the right word, seeing clearly, concentrating and doing more than one thing at a time (multi-tasking). Academic abilities are often affected as well. People may have difficulty spelling, doing simple math problems, and understanding what they read. Emotional changes may include frustration, depression, and difficulty controlling anger. After a brain injury, you, your doctor, therapists, and family members may want to know exactly how you have been affected." More

      How Relationships are Affected and What You Can Do

Communication: Keep communication open to others

  • Letting others know you are not your normal self right now.

  • Often loved ones or caregivers are suffering with you as well and may have many mixed feelings of helplessness, frustration, depression or even resentment.

  • How you are feeling and what your symptoms are.

  • What you need help with

  • What your treatments are and how your physician is helping you

  • Share informative websites or finding ways to help loved ones understand

       the disease.

  • Make sure to let them know you appreciated all they do for you.

  • Remembering that your friends and loved ones may not understand HE which can often be an "invisible illness."

  • Remembering that your friends or loved ones may not understand your new normal and the changes in your life and social situations.

How Relationships Are Affected


(This is based on a VIDEO by the Northern Brain Injury Association)

**Note: Although they say "they" this can certainly be read and applied to an HE survivor or by a caregiver


     Just as individuals are different, so are brain injuries, and the resulting challenges. Rehabilitation after injury therefore depends on many factors, but adaptability, flexibility, repetition and patience always remain crucial to healing.

     Flooding occurs after brain injury because the brain's 'filters' no longer work properly. These filters normally allow us to sort through everything that comes into the brain - sounds, sights, touch, smells, movement, questions, problems, demands, etc. - so we can pick out what is important to focus on. They automatically "tune out" the things that do not need to be noticed - such as the sound of a heartbeat, the sensation of clothing on skin, the movement of people walking by, etc.

     When the filters are damaged or impaired: everything comes into the brain with equal force, all at once, and too fast. Because the injured brain now works much more slowly, it cannot sort the information fast enough and becomes overwhelmed. This causes a strong stress response throughout the entire body, and the brain eventually shuts down. The person will feel like they have no control, and when they are flooding, doing or thinking even the simplest thing will seem impossible to them.

    Flooding is only a temporary situation (usually) and the brain will return to its usual function after it has rested. However, situations that cause flooding should be avoided whenever possible, because it can take hours, or even days of down time to recuperate, which is frustrating. In addition, it is much more difficult for the brain to heal and make new neuron connections when overwhelmed and shut down.




We recommend that you teach the survivor to use the 6 R's as coping strategies:


RECOGNIZE: Recognize the things that trigger their flooding, what it feels like when they are flooding, what their early warning signs are, and then to learn coping strategies.


Here are examples of how survivors describe flooding:

  • Head is spinning, head is floating away, total "blank out"

  • Headache that gets really bad.

  • Thoughts are slow, can't concentrate, can't think, can't connect 2-3 thoughts, can't follow conversation, can't finish sentence, and can't see what's in front of me.

  • Confused, don't know what's going on, things don't make any sense.

  • Really tired, slurring speech, stuttering, staggering, tripping, falling, "heat wave" through body, sweating, blurred vision.

  • Get really miserable and cranky, say things I shouldn't, have anger explosions.


The following are examples of triggered flooding:

  • They are at the mall, and they tell you that their brain is starting to feel 'fuzzy' from the noise and bustle. They say they can't think clearly, and all they want to do is run out the door.

  • They are in the grocery store, and they say that the all of the lines, shapes, patterns and rows of containers are starting to 'vibrate' in their brain. They feel panicky and jittery.

  • They have just finished a meeting with their doctor or lawyer, and when they leave, walk right into a wall. Their say brain just feels "done". 


REDUCE: Identify the things that make their flooding worse, such as:

  • Places or situations that are over-stimulating, and cause sensory overload, things like:

  1. too many people talking at once, cross talk, noise.

  2. hustle and bustle, crowds, busy malls, traffic.

  3. bright lights, fluorescent lights, lots of visual patterns or colors.

  • Teach them how to identify and avoid situations they cannot control.

  • Teach them how to minimize stress and demands in their life, and make sure that they don't take on too many things at once.

  • Teach them to avoid doing things late in the day, or when they are tired, hungry, sick, etc.

  • Help the survivor to come up with their own coping strategies.



RETREAT: Work with the survivor to help him/her learn to identify, and watch for, early warning signs that flooding is about to happen. Teach them to stop whatever they are doing, and redirect to another thought or activity, or simply walk away.



RELAX: Help calm their brain by:

  • Going somewhere quiet - where there is minimal stimulation of any kind.

  • Lying quietly with their eyes closed and meditating, or, maybe having a nap.

  • Doing something mindless, and with a single narrow focus, like:

  1. reading, watching TV, playing solitaire, playing on computer

  2. taking a warm, candlelit bath, listening to soothing music, crafting, etc.



RETHINK: Encourage them to rethink what they are doing, and to use coping strategies to succeed at what needs to be done without flooding.

  • Encourage them to be honest and accept flooding as reality.

  • Assist the survivor to take control of the situation in some way, so that they don't feel like a victim.

  • Encourage them to be honest with others by:

  1. letting others know that they need to take a break, and are not being rude.

  2. asking politely for others to talk one at a time, or, to slow their speech down.

  3. asking someone to take notes for them, or to record the meeting - so that they can concentrate only on listening.

  • Encourage them to set realistic goals for the day and week:

  1. this might mean planning only one or two tasks at a time.

  2. taking 'rest' days in between 'busy' days.

  3. taking rest breaks during the day.


  • Teach them to pick a good time to do things, such as:

  1. early in the day when they are mentally and physically at their peak.

  2. during 'less busy' times - usually early morning.

  3. and, encourage them to travel during slower traffic times.


  • If they must be in a busy or stressful place, encourage them to:

  1. stay only a short time.

  2. stay on the outside of the crowd, or at the back.

  3. have an exit plan in case they need to leave quickly - such as to sit in an aisle seat, or stand near a door.

  4. encourage them to take someone with them for support.


  • encourage them to wear a billed hat, and/or use sunglasses to reduce excess light.

  • encourage them to wear earplugs or headphones to reduce excess noise.

  • encourage them to socialize with only 1 or 2 people at a time, or, in small groups.



RETURN: Have them return to life and try out their plan. Encourage them to keep doing what works, and to modify what does not.




Here is a neuroplasticity strategy you can teach survivors that will assist them to restore and strengthen neuron connections necessary to manage their flooding:

  • Encourage them to make a list of their triggers, then place them in the order of how strongly they are affected and impacted by them.

  • Teach them to pick the mildest trigger to work on first, such as being in a room with two or more people.

  • Have them expose themselves to the trigger for only a few minutes, then leave.

  • Be sure to encourage them to repeat the exposure several times over the week - always for only a few minutes.

  • Teach them to gradually increase exposure - but only when comfortable, and not flooding.

  • When they can actually manage that trigger, encourage them to move on to the next mildest trigger.

  • Teach them to repeat this strategy for each trigger, and, over long periods of time.

  • And, encourage them to recognize when they have reached the maximum levels that they can manage.


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