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June 21, 2017 | Tricia Rispoli, LMHC,

Autoimmune Encephalitis can be a devastating, life-altering diagnosis not only for patients themselves, but for their spouses, children, caregivers, and families. While there are many forms of AE, all AE patients have one thing in common; their own bodies have turned on them. Patients experience a host of symptoms, ranging from psychosis to autonomic dysfunction. The symptoms sometimes come on suddenly in the middle of the day, without warning; while others suffer silently for months. AE impacts people of all ages, gender, and race. There is no discrimination when your body is silently waging war on your once healthy brain. Like war, it’s very unlikely for a person with AE to walk away unaffected. Every single part of your life is impacted in some way. Most report loss of personality characteristics, careers, mobility, memory, cognitive function, spouses, family members, and friends. Patients spend weeks, months, and even years in hospitals or long term rehabilitation centers learning to function normally again. Treatments for AE can be harsh on the body; as many receive chemotherapy, steroids, and IVIG at rapid rates to help stop the body’s attack. Or be subjected to plasmapharesis where the body’s blood is filtered through a machine and the offending antibodies are removed. AE drains your energy, and sometimes your spirit. Sometimes life with AE feels impossible, especially when you are surrounded by people who don’t believe your disease is real, or that you “can’t possibly be sick, you look fine!” No one could possibly understand the great amount of energy it takes for AE patients to get out of bed in the morning, put on a smile, and fake it through the day. It may be true that most AE patients don’t look “sick” in the way we expect, and because of this I feel there is pressure for them to try and be as “normal” as possible. This constant pressure, lack of support or validation for how they are feeling, combined with the physical and emotional symptoms of this disease, leaves most suffering in silence with a host of emotional issues, such as depression, anxiety, PTSD, etc.

In the next few months, I will taking a look at different mental health issues as they pertain to Autoimmune Encephalitis. These posts are designed to provide support, and resources for AE patients and caregivers who may be one of the ones suffering in silence. I say suffer no more, because you are not alone!

Depression is a big scary word for most, because let’s face it, when we think about mental illness, we think “laying on the shrink’s couch,” or a big scary insane asylum. These perspectives are a direct result of fictional portrayals of mental health in movies, TV shows, and books. These portrayals are very wrong. Being depressed, or feeling depressive symptoms is not enough to land you in a hospitalized situation. The facts are, in 2016, over 14.6 million people in the US alone were diagnosed and treated for a depressive disorder. That’s about 6.5% of the population, and does not account for the number of people who were too afraid to speak up or seek help. Depression comes from a place of feeling hopeless or helpless. When things in your life spiral out of control, or you lose a sense of safety or control over a specific aspect of your life, it’s a very normal reaction to feel hopeless or helpless. In typical situations, emotionally healthy individuals are able to cope and deal with these changes, and many times are able to move past the inciting event without incidence. In a person whose emotional, physical, and cognitive wellbeing has been compromised, such as someone with AE, the ability to cope is not always there, as patients are inundated with treatments, fear, anxiety, and a loss of themselves. Never before has the support of family and friends been more important. Having a strong support system is very important to a the patient with AE, and crucial in their recovery.

Autoimmune Depression

One of the aspects of AE that is not discussed amongst AE patients is “autoimmune depression.” Most are focused on the more pressing symptoms of the disease, that this is often overlooked or dismissed. The symptoms of AE depression are a direct result of the attacking antibody focusing it’s attention on the limbic system, which is the most common area of the brain attacked in AE patients. A patient with AE depression can be emotionally stable and feel “fine” in one minute, and have suicidal ideation in the next. Sometimes the change in emotionality can occur suddenly, leaving patients feeling scared, confused, and out of control. These symptoms occur most times when the disease is uncontrolled, or when a patient is heading into a disease flare. Watching for these signs and having an emergency treatment plan in place with your neurologist is vital. Depression and suicidal ideation can be resolved with oral or IV steroids, and a taper which can reverse this state, bringing down brain inflammation and stopping the attacking antibodies from affecting the part of the brain that controls emotions. This means that AE depression is not a permanent state of feeling, and can almost always be resolved.

Atypical Depression

It’s important to note that AE depression is very different from Atypical Depression. AE depression hits suddenly, and can be mediated with disease treatment. Atypical Depression is not a symptom of AE disease, but a side effect of coping with the normal challenges that arise from living with a chronic, life-threatening illness. You will notice that some of the signs of depression are very similar to AE symptom presentation, so if your symptoms come on suddenly, and don’t resolve with typical coping skills, you need to seek out a professional evaluation from your doctor, and for AE patients this would be your treating Neurologist. It’s also important to note, that not every case of depression looks or feels the same. Depression does not have to look like “crying all the time,” or feeling “sad.” Here are some very common symptoms of Atypical Depression:

Atypical Depression can impact your mood: You may feel anxiety, apathy (lack of emotion), general discontent, guilt, hopelessness, loss of interest or pleasure in activities you once enjoyed, and mood swings that range from anger to sadness. For AE patients, these symptoms could be a direct result of disease progression and/or medication side effects.

Atypical Depression can impact your sleep: It may be difficult for you to fall asleep (insomnia), stay asleep (frequent waking), or you may feel tired/fatigued and sleep often (hypersomnia).

Atypical Depression can impact your whole body: You may feel excessively hungry, fatigue, loss of appetite, weight gain or loss, and a feeling of restlessness.

Atypical Depression can impact your behavior: You may feel very easily agitated, cry excessively, feel constantly irritable or easily frustrated. You may also withdraw from your friends and family, preferring to be alone, or feeling fatigued by spending time with others. For AE patients who suffer from seizures, it’s important to remember that some seizure types can present with extreme emotionality such as sudden crying or laughing. This is why consulting you’re your Neurologist first, is an important step in treating these symptoms.

Atypical Depression can impact your cognitive abilities: You may struggle with concentrating, a slowing of processing, deficits with short-term memory, or have thoughts of suicide. In rare cases, you may have auditory or visual hallucinations. For many AE patients, this is a very common symptom of disease progression.

What can I do if I think I’m suffering from AE depression?

If you feel that you may be suffering from AE depression, just know that you are not alone. AE is truly devastating, and the life you’ve always known probably isn’t the same anymore. You may have financial and relational stress, and life might be feeling really hopeless right now. You may be still dealing with active medical concerns, and feeling scared, alone, and helpless. Feeling depressive symptoms is not your fault, or indicative of any personal failings. It’s a perfectly normal emotional response given the amount of trauma that you have experienced as a result of having AE. The first thing to do, is to recognize the signs, then get help. Many people have an emergency plan in place with their neurologist or an emergency prescription of prednisone to resolve symptoms so they can address this quickly. The difference in atypical depressive symptoms and AE active disease/flaring, is that the change is quick and dramatic.

Including a therapist, as a member of your support team, can be very beneficial. This therapist needs to understand that any neuropsychiatric symptoms you are experiencing are a direct result of autoimmune encephalitis and I recommend that they have permission to discuss your case with your neurologist. Ask your neurologist for a referral. Typically, once you have an appointment, you will meet with the provider to discuss how you are coping with your symptoms of AE, and decide on a course of action. Due to the impacts on the brain, patients with AE can suffer from traumatic brain injuries. When appropriate, rehabilitation from this brain injury can be incorporated. Treatments such as cognitive behavioral therapy and medication may be given as an additional support until the immunosuppressant treatments take full effect, but should not be used as the only treatment intervention for patients with AE. Life-style changes that adapt to your disabilities from AE, as well as avoiding stress and overstimulation can be helpful as well.

I’m a caregiver and I think I’m depressed, what can I do?

For caregivers, depression can take the form of something called “Caregiver Burnout.” Caregiver burnout is a state of physical, emotional, and mental exhaustion that may be accompanied by a change in positive and caring attitude to negative and unconcerned. Burnout can occur when caregivers don’t get the help they need, or they try to do more than they are able to, either physically or financially. The symptoms are similar to typical depression:

  • Withdrawal from friends and family

  • Loss of interest in activities previously enjoyed

  • Feeling blue, irritable, hopeless, and helpless

  • Changes in appetite, weight, or both

  • Changes in sleep patterns

  • Getting sick more often

  • Feelings of wanting to hurt yourself or the person for whom you are caring

  • Emotional and physical exhaustion

  • Excessive use of alcohol and/or sleep medications

Like AE patients, recognizing the symptoms and getting help is key in getting better. Don’t be afraid to admit that you may need help. Caring for someone who is ill is a very difficult job, and it’s ok to feel hopeless or helpless. When those feelings become overwhelming or impact your ability to function during the day, help is needed to restore your sense of balance and wellness.

Self-help for Atypical Depression:

Along with seeking treatment to manage depressive symptoms there are several things you can do that may help you cope with depression. Developing self-help strategies to manage your depression in day to day life can make a huge difference to how well you are able to live with your symptoms. These strategies can also be helpful for patients suffering from AE depression, but should only be used in conjunction with IV or oral steroids, as AE depression is indicative to active disease.

  • Journal your thoughts by writing them down. It’s a good way to make sense of your feelings, and it can also help you figure out which thoughts and situations make your symptoms worse.

  • Learn relaxation techniques. Relaxation techniques are great for reducing stress. Take a yoga class. Go for a walk. Listen to music, or read your favorite book.

  • Eat well and keep active. Moving your body helps to stimulate hormones (like endorphins) that help you feel better about yourself. Try to aim for 20 minutes of continuous movement throughout the day. Mak good food choices, and avoid “junk” foods, and aim for whole, and complete foods.

  • Take some time out to do things you enjoy.  Living with AE can make it really hard to get motivated to socialize and do things you enjoy. Try and make yourself do one thing you usually enjoy each day.

  • Get back into nature. There’s research that shows that when you have contact with pets, plants, gardens, parks etc., it reduces stress and boosts your mood. Go for a walk outside.

  • Talk to someone you trust. Talking to a family member or friend is a great opportunity for you to express how you’re feeling. They can also provide you an outsider’s opinion on what’s going on.

  • Join a support group. It can be really helpful to talk to people who have gone through similar experiences. Talk to your doctors to find local support groups for AE or similar diseases.

  • Set small goals. Don’t expect a ridiculous amount of yourself; it could make you feel down if you can’t meet your expectations. Set yourself small goals and take things one step at a time.

  • Develop a healthy sleep routine. Sleep has a huge effect on our physical and emotional health. Try to aim for 7-9 hours of uninterrupted sleep each night. Talk to your physician if you find this difficult to do.

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Our website is not a substitute for independent professional medical advice. Nothing contained on our website is intended to be used as medical advice. No content is intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professional's advice. Although THE INTERNATIONAL AUTOIMMUNE ENCEPHALITIS SOCIETY  provides a great deal of information about AUTOIMMUNE ENCEPHALITIS, all content is provided for informational purposes only. The International Autoimmune Encephalitis Society  cannot provide medical advice.

International Autoimmune Encephalitis Society is a charitable non-profit 501(c)(3) organization founded in 2016 by Tabitha Andrews Orth, Gene Desotell and Anji Hogan-Fesler. Tax ID# 81-3752344. Donations raised directly supports research, patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world. Financial statement will be made available upon request.

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