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This website is not a substitute for professional advice, and the content here is not intended for use in diagnosing, curing, or preventing disease. The site does not employ and is not overseen by medical professionals. Articles and studies listed here are intended solely for personal use and reference.  Although you will find a great deal of information about HE/SREAT on this website, HESA cannot provide medical advice. If you have HE/SREAT, or think you may have it, consult a qualified neurologist,

preferably one with experience addressing immune-mediated illness. 

© 2019 Hashimoto's Encephalopathy SREAT Alliance
 

CHANGES

WITH AE

Your brain is under attack and you have

noticed that you no longer feel like yourself: certain foods you normally like taste strange, cannot enjoy being in crowds, you cry or laugh for no reason or excessively.

Maybe you feel foggy or flat or a void of emotion. You feel tired all the time and cannot perform your normal activities which can cause depression or anxiety. 

You feel isolated from the world.

There are so many ways people change with an AE. How do you live with emotions like a swinging door? How do others react to this new you

These emotions are not always permanent but even after treatments there can be changes that you notice are not the normal you. The you before AE/HE.

Emotional Changes Following Encephalitis

According to

Accepting Your "New Normal"

According to

Rehabilitation

According to"

"FLOODING"

(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.

 

STRATEGIES TO WORK AROUND FLOODING

 

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.

 

 

NEUROPLASTICITY STRATEGY TO STRENGTHEN NEURON CONNECTIONS

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.