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Brain Beats

Brain Beats

May 26, 2021 | Vanessa B. Sanchez, PennNeuroKnow

Have you ever put on music to help you study? Or to calm you down after a stressful day? Maybe you’re scrolling on Youtube right now trying to figure out what to listen to next…Well, have you ever considered listening to binaural beats? 

What are binaural beats?

Binaural beats are a perceptual phenomenon (or illusion) that occurs when two different tones are presented separately to each ear1. When these two tones are presented, you, the listener, perceive the difference between the sound waves entering the left and right ear2-3

For example, if the left ear registers a tone at 400 Hz and the right ear registers one at 410 Hz, what you actually hear is halfway between the two tones: 405 Hz – the binaural beat (Figure 1) 3,6.  Because your brain is trying to interpret these two frequencies, this binaural beat of 405 Hz is considered an illusory tone3,6. Scientists from around the world have shown that in order for a binaural beat to occur, the difference between the two frequencies (e.g., 400 Hz – 410 Hz = 10 Hz) must be small (≤ 30 Hz)7. If the difference is not small (01571ce3 a8cc 4b98 a6dd 7b5573dc113b - Brain Beats 30 Hz), your ears will be able to capture the two tones separately and no binaural beat will be perceived6. Will you perceive a binaural beat if you listen to 10 Hz from both ears? No, because a binaural beat is the difference between the two frequencies, which is why it is considered an auditory phenomenon or illusory tone3,4,6

 
 
 Figure 1: If the left ear registers a tone at 400 Hz and the right ear registers one at 410 Hz, what you actually hear is the halfway between the two tones, 405 Hz – the binaural beat or illusory tone. The difference between 400 Hz and 410 Hz is 10 Hz, which is within the alpha brain wave/state and is associated with relaxation and focus1,4,610. Image was created with BioRender.com

 

 

 

Figure 1: If the left ear registers a tone at 400 Hz and the right ear registers one at 410 Hz, what you actually hear is the halfway between the two tones, 405 Hz – the binaural beat or illusory tone. The difference between 400 Hz and 410 Hz is 10 Hz, which is within the alpha brain wave/state and is associated with relaxation and focus1,4,610. Image was created with BioRender.com

How are binaural beats processed in the brain?

How your brain is processing these binaural beats is still not exactly clear. Some scientists believe the phenomenon of binaural beats is thought to occur through a process called interhemispheric coherence3,9. Your brain can be divided up into two major parts: the left and the right hemisphere. In each hemisphere lies a region called the auditory cortex, which is where and how auditory information (in this case binaural beats) gets processed. Normally, the sounds that your right and left auditory cortices are processing are very similar. When you listen to binaural beats, your auditory cortices become confused because they are trying to process the two different tones9. To solve this binaural puzzle, scientists believe that your auditory cortices communicate with each other more, and therefore become more synchronized9

Some scientists believe that this synchrony is associated with your brainwaves1-10. Brain waves are electrical impulses that reflect how the neurons in your brain are communicating with each other10. These brain waves can occur at certain frequencies and can be either slow or fast. Your brain has five different types of brain waves that each fall within a certain range of frequencies. These types of brain waves represent what is called a brain state. For example, if your brain waves occur at high frequency (or what’s called the “gamma” or “beta” states), you are likely to be learning and deeply concentrated4,10. Other brain waves at a slower frequency like “delta” and/or “theta” states are associated with sleep and relaxation4,10. In between, are “alpha” states which are associated with reducing stress and positive thinking4,10. Interestingly, some scientists believe that the frequency of sounds that the auditory cortex is processing can affect the frequency of your brain waves4,6,8,10. So, if binaural beats are also in these lower frequencies like 4 – 8 Hz (theta state), it is thought that your brain waves will synchronize with these frequencies, which would then make you feel relaxed. 

Is this true?

Dentists think so…

Many of us have experienced the anxiety that comes with getting our wisdom teeth removed. In one study, some patients were lucky enough to be offered a chance to listen to binaural beats before surgery. If they agreed, they listened to binaural beats (9.3 Hz ~ theta waves) through stereo headsets for 10 minutes and during this time they were given a local anesthetic7. Those who chose not to listen were just given the local anesthetic and sat alone, in silence, for 10 minutes. To measure anxiety levels scientists used a visual analog scale (VAS) before and after the 10 minutes (where patients either sat in silence or listened to binaural beats).  You’ve probably seen a VAS at your local dentist’s office; it is just a line that represents a continuum of “no anxiety at all” to “worst anxiety imaginable” and can also be represented as 6 faces that go from a happy face (no anxiety) to a face with tears (worst anxiety)7. What scientists found was that those who chose not to listen to binaural beats leaned towards the right side of the spectrum: worst anxiety. Meanwhile, patients who originally reported high levels of anxiety and then listened to binaural beats (for 10 min) reported that their anxiety levels significantly decreased7. Remember, theta waves are associated with relaxation, so it is not surprisingly if these patients might have felt more relaxed after listening to binaural beats and reported lower anxiety levels. Overall, this interesting study suggests that listening to binaural beats can reduce anxiety levels in a variety of situations.  

Other interesting studies that have been conducted on binaural beats show that they help to improve cognition, focus, motivation, memory, and even confidence!9 With all this in mind, I would encourage you to check them out – you never know unless you try. Curious? My favorite binaural beat to help me focus is here.

References:

  1. Oster, G. (1973). Auditory beats in the brain. Scientific American229(4), 94-103.
  2. Lane, J. D., Kasian, S. J., Owens, J. E., & Marsh, G. R. (1998). Binaural auditory beats affect vigilance performance and mood. Physiology & behavior63(2), 249-252.
  3. Garcia-Argibay, M., Santed, M. A., & Reales, J. M. (2019). Efficacy of binaural auditory beats in cognition, anxiety, and pain perception: a meta-analysis. Psychological Research83(2), 357-372.
  4. Booth, S. (2019, May 14). This Is Your Brain on Binaural Beats. Retrieved March 25, 2021, from https://www.healthline.com/health-news/your-brain-on-binaural-beats
  5. Lentz, J. J., He, Y., & Townsend, J. T. (2014). A new perspective on binaural integration using response time methodology: super capacity revealed in conditions of binaural masking release. Frontiers in Human Neuroscience8, 641.
  6. Gao, X., Cao, H., Ming, D., Qi, H., Wang, X., Wang, X., … & Zhou, P. (2014). Analysis of EEG activity in response to binaural beats with different frequencies. International Journal of Psychophysiology94(3), 399-406.
  7. Isik, B. K., Esen, A., Büyükerkmen, B., Kilinc, A., & Menziletoglu, D. (2017). Effectiveness of binaural beats in reducing preoperative dental anxiety. British Journal of Oral and Maxillofacial Surgery55(6), 571-574.
  8. Solca, M., Mottaz, A., & Guggisberg, A. G. (2016). Binaural beats increase interhemispheric alpha-band coherence between auditory cortices. Hearing research332, 233-237.
  9. Garcia-Argibay, M., Santed, M. A., & Reales, J. M. (2019). Binaural auditory beats affect long-term memory. Psychological research83(6), 1124-1136
  10. Buskila, Y., Bellot-Saez, A., & Morley, J. W. (2019). Generating brain waves, the power of astrocytes. Frontiers in neuroscience13, 1125.

Cover image: Photo by Andrea Piacquadio from Pexels

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    International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE.   Trivia Playing cards 3 FB 500x419 - Brain Beats For this interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.   AE Warrior Store 300x200 - Brain Beats

    Be a part of the solution by supporting IAES with a donation today.

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    Depression in Autoimmune Encephalitis

    Depression in Autoimmune Encephalitis

    April 14, 2021 | Sarah Reitz, PennNeuroKnow

    Major depressive disorder, commonly called depression, is a disorder that affects more than 168 million people worldwide1,2. Symptoms include depressed mood, lack of energy, loss of interest/pleasure, sleep disturbances, significant weight changes, and thoughts of suicide3. While depression can occur on its own, which is known as primary depression, it can also be caused by other diseases or medical conditions. This form of depression, called secondary depression, is relatively common in patients diagnosed with chronic illnesses, and is one of the key factors resulting in an impaired quality of life experienced by patients with chronic diseases4.

    Research has shown that patients with autoimmune diseases involving the brain and spinal cord, such as multiple sclerosis (MS), Hashimoto encephalopathy, and autoimmune encephalitis (AE), are at increased risk for depression and other mood disorders5,6. One study found that depressive symptoms occur in up to half of all patients with MS7, and another showed that prior hospitalization for an autoimmune disease increases the risk of developing a major mood disorder by 45%8. Some of this increase is likely a reaction to the diagnosis itself and the impairments caused by the disease. However, increased rates of depression are seen in MS patients up to 2 years before they are diagnosed with MS. These findings suggest that there is a biological link between autoimmune disease and depression that increases the risk of developing depression, independent of any reaction to the diagnosis or resulting lifestyle changes. 9,10. Research over the last 2 decades supports this idea, with increasing evidence linking the immune system and inflammation to a number of psychiatric disorders, including depression.

    A link between the immune system and depression?

    One indicator that the immune system can affect mood and behavior is the phenomenon of cytokine-induced sickness behavior. During an illness, cells in the immune system release small proteins called cytokines to help regulate and synchronize the immune system’s response to an invading bacteria or virus. Some examples of cytokines include interleukins (IL), tumor necrosis factors (TNF), and interferons (IFN). This increase in cytokines leads to specific behaviors many of us have experienced before while sick, including decreased activity, loss of energy, and even depressed mood11.

    Based on the observation that increased cytokines during sickness can lead to depression-like symptoms, researchers began to examine cytokine levels in patients diagnosed with depression and other psychiatric disorders. Many studies have found that patients with depression, who were otherwise medically healthy, showed signs of immune system activation, with increased levels of IL-6 and, in some cases, TNF-alpha12. Another study examined brain tissue from patients diagnosed with depression and found increased levels of many types of interleukins as well as IFN-gamma13. Additionally, mice treated with cytokines or drugs that increase levels of cytokines show depression-like behaviors, further linking the immune system and inflammatory response to depression14. This effect is also seen in humans, with one study finding that 17% of patients treated with IFN-alpha developed psychiatric side effects, including depression, and that these side effects improve once the cytokine treatment is stopped15.

    Just as increases in cytokine levels are linked to an increased risk of depression, research suggests that decreasing cytokines and inflammation can improve depression symptoms. A number of antidepressant therapies, including selective serotonin reuptake inhibitors (SSRIs), serotonin-norepinephrine reuptake inhibitors (SNRIs), tricyclic antidepressants, and even psychotherapy have anti-inflammatory effects, lowering levels of certain pro-inflammatory cytokines16-19. Taking this even further, there is evidence that anti-inflammatory drugs can improve depression symptoms20. However, anti-inflammatory treatments can sometimes interfere with the anti-depressant effects of SSRIs, so adding an anti-inflammatory drug (including drugs such as aspirin or ibuprofen) to a depression treatment plan should only be done after careful discussion with your doctor21.

    Depression in autoimmune encephalitis

    Given this link between immune system activation and depression, it is not altogether surprising that depression and other psychiatric symptoms are common in AE and other autoimmune disorders. For reasons that are still not understood, patients with autoimmune encephalitis with antibodies directed against cell surface antigens (especially anti-NMDA receptor encephalitis) are more likely to experience psychiatric symptoms compared to patients with antibodies directed against intracellular antigens (such as anti-Hu or anti-Ma encephalitis)22. In fact, between 65-80% of patients with anti-NMDA receptor encephalitis experience psychiatric symptoms, with depression being among the most common23,24. This has also been demonstrated in a mouse model of AE, where mice received infusions of cerebrospinal fluid into their brains containing antibodies from patients with NMDA receptor encephalitis. As the anti-NMDA receptor antibodies attacked their NMDA receptors, the mice developed depressive-like behaviors and lost interest in things they had previously found pleasurable (in this case, a sugary drink). Once the infusions stopped and the NMDA receptor levels returned to normal, these depressive-like behaviors improved25.

    In NMDA receptor encephalitis, psychiatric symptoms often appear before any neurologic symptoms26. As a result, it can be difficult to distinguish the initial phases of the disease from psychiatric disorders such as depression or schizophrenia. This leads many patients to assume they have a purely psychiatric disorder and to seek help from a psychiatrist first. One study found that this occurred in 76% of patients ultimately diagnosed with NMDA receptor encephalitis27!

    This becomes problematic when psychiatrists are not aware that early stages of autoimmune encephalitis can mimic psychiatric disorders. Rather than ordering antibody tests to examine a potential autoimmune disorder, they may assume the patient has major depressive disorder or another psychiatric disorder. Based on this assumption, they may attempt to treat the patient with anti-depressant therapies rather than treatments aimed at the underlying autoimmune condition. This is unfortunately not a hypothetical scenario. In a study examining a group of 464 people with NMDA receptor encephalitis, nearly 10% were initially diagnosed with a psychiatric disorder, including depression, before the correct diagnosis of NMDA receptor encephalitis was reached6.

    A timely diagnosis is critical in treating autoimmune encephalitis, since earlier administration of immunotherapies is associated with better patient outcomes28. A delay in a correct diagnosis and treatment plan can be especially harmful given that an estimated 10% of patients with NMDA receptor encephalitis experience suicidal thoughts29. Luckily, as more is learned about AE, psychiatrists are becoming increasingly educated and aware of the psychiatric symptoms of the disease. An improved awareness of AE will allow for faster and more accurate diagnoses, leading to faster treatment and improved outcomes for patients suffering from this disease.

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    References

    1. Kessler RC, Bromet EJ. The epidemiology of depression across cultures. Annu Rev Public Health. (2013) 34:119–38. doi: 10.1146/annurev-publhealth-031912-114409
    2. Abajobir AA, et al. Global, regional, and national incidence, prevalence, and years lived with disability for 328 diseases and injuries for 195 countries, 1990-2016: a systematic analysis for the Global Burden of Disease Study 2016. Lancet. (2017) 390:1211–59. doi: 10.1016/S0140-6736(17)32154-2
    3. American Psychiatric Association. Diagnostic and statistical manual of mental disorders (5th ed.) (2013). doi: 10.1176/appi.books.9780890425596
    4. Moussavi S, Chatterji S, Verdes E, Tandon A, Patel V, Ustun B. Depression, chronic diseases, and decrements in health: results from the World Health Surveys. Lancet. (2007) 370:851–8. doi: 10.1016/S0140-6736(07)61415-9
    5. Pape K, Tamouza R, Leboyer M, Zipp F. Immunoneuropsychiatry – novel perspectives on brain disorders. Nat Rev Neurol (2019) 15(6):317–28. doi: 10.1038/s41582-019-0174-4
    6. Al-Diwani A et al. The psychopathology of NMDAR-antibody encephalitis in adults: a systematic review and phenotypic analysis of individual patient data. Lancet Psychiatry (2019) 6(3):235–46. doi: 10.1016/S2215-0366(19)30001
    7. Patten SB, Marrie RA, Carta MG. Depression in multiple sclerosis. Int Rev Psychiatry (2017) 29(5):463–72. doi: 10.1080/09540261.2017.1322555
    8. Benros, M. E. et al. Autoimmune diseases and severe infections as risk factors for schizophrenia: a 30-year population-based register study. Am. J. Psychiatry (2011)168, 1303–1310.
    9. Hoang H, Laursen B, Stenager EN, Stenager E. Psychiatric co-morbidity in multiple sclerosis: The risk of depression and anxiety before and after MS diagnosis. Mult Scler J. (2016) 22:347–53. doi: 10.1177/1352458515588973
    10. Marrie RA et al. Rising incidence of psychiatric disorders before diagnosis of immune-mediated inflammatory disease. Epidemiol Psychiatr Sci. (2017) 28:333–42. doi: 10.1017/S2045796017000579
    11. Kelley, K. W. et al. Cytokine-induced sickness behavior. Brain Behav. Immun. (2003) 17(Suppl. 1):112–118
    12. Haapakoski, R., Mathieu, J., Ebmeier, K. P., Alenius, H. & Kivimaki, M. Cumulative meta-analysis of interleukins 6 and 1β, tumour necrosis factor α and C-reactive protein in patients with major depressive disorder. Brain Behav. Immun. (2015) 49, 206–215
    13. Shelton RC, Claiborne J, Sidoryk-Wegrzynowicz M, Reddy R, Aschner M, Lewis DA, Mirnics K. Altered expression of genes involved in inflammation and apoptosis in frontal cortex in major depression. Mol Psychiatry (2011) 16:751–762
    14. Fu X, Zunich SM, O’Connor JC, Kavelaars A, Dantzer R, Kelley KW. Central administration of lipopolysaccharide induces depressive-like behavior in vivo and activates brain indoleamine 2,3 dioxygenase in murine organotypic hippocampal slice cultures. J Neuroinflammation(2010) 7(43):1–12
    15. Renault PF et al. Psychiatric complications of long-term interferon alfa therapy. Arch Intern Med. (1987) 147:1577–80. doi: 10.1001/archinte.1987.00370090055011
    16. Mohr DC, Goodkin DE, Islar J, Hauser SL, Genain CP. Treatment of depression is associated with suppression of nonspecific and antigen-specific TH1 responses in multiple sclerosis. Arch Neurol. (2001) 58:1081. doi: 10.1001/archneur.58.7.1081
    17. Ohgi Y, Futamura T, Kikuchi T, Hashimoto K. Effects of antidepressants on alternations in serum cytokines and depressive-like behavior in mice after lipopolysaccharide administration. Pharmacol Biochem Behav. (2013) 103:853–9. doi: 10.1016/j.pbb.2012.12.003
    18. Hannestad J, Dellagioia N, Bloch M. The effect of antidepressant medication treatment on serum levels of inflammatory cytokines: a meta-analysis. Neuropsychopharmacology. (2011) 36:2452–9. doi: 10.1038/npp.2011.132
    19. Ramirez K, Shea DT, Mckim DB, Reader BF, Sheridan JF. Imipramine attenuates neuroinflammatory signaling and reverses stress-induced social avoidance. Brain Behav Immun. (2015) 46:212–20. doi: 10.1016/j.bbi.2015.01.016
    20. Kohler, O. et al. Effect of anti-inflammatory treatment on depression, depressive symptoms, and adverse effects: a systematic review and meta-analysis of randomized clinical trials. JAMA Psychiatry (2014) 71:1381–1391
    21. Warner-Schmidt JL, Vanover KE, Chen EY, Marshall JJ, Greengard P. Antidepressant effects of selective serotonin reuptake inhibitors (SSRIs) are attenuated by antiinflammatory drugs in mice and humans. Proc Natl Acad Sci USA. (2011) 108:9262–7. doi: 10.1073/pnas.1104836108
    22. Hansen N and Timaus C. Autoimmune encephalitis with psychiatric features in adults: historical evolution and prospective challenge. J. Neural Transm. (2021) 128:1-14
    23. Kruse JL et al. Psychiatric autoimmunity: N-methyl-D-aspartate receptor IgG and beyond. Psychosomatics. (2015) 56(3)227-241
    24. Wang W, Zhang L, Chi XS, He L, Zhou D, Li JM. Psychiatric symptoms of patients with anti-NMDA receptor encephalitis. Front in Neurol.(2020) doi: 10.3389/fneur.2019.01330
    25. Planaguma J et al. Human N-methyl-D-aspartate receptor antibodies alter memory and behaviour in mice. Brain 138(1):94-109
    26. Dalmau J, Armangué T, Planagumà J, Radosevic M, Mannara F, Leypoldt F, Geis C, Lancaster E, Titulaer MJ, Rosenfeld MR, Graus F (2019) An update on anti-NMDA receptor encephalitis for neurologists and psychiatrists: mechanisms and models. Lancet Neurol 18:1045–1057
    27. Dalmau J et al. Anti-NMDA-receptor encephalitis: case series and analysis of the effects of antibodies. Lancet Neurol., (2008) 1091-1098.
    28. Titulaer MJ, et al. Treatment and prognostic factors for long-term outcome in patients with anti-NMDA receptor encephalitis: an observational cohort study. Lancet Neurol (2013)12:157-165.
    29. Zhang L et al. Suicidality is a common and serious feature of anti-N-methyl-D-aspartate receptor encephalitis. J Neurol. (2017) 264(12):2378-2386.

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    Your generous Donations allow IAES to continue our important work and save lives!

      guidestar platinum logo 300x300 1 e1605914935941 - Depression in Autoimmune Encephalitis

    Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org  

     

     

    International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE.   Trivia Playing cards 3 FB 500x419 - Depression in Autoimmune Encephalitis For this interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.   AE Warrior Store 300x200 - Depression in Autoimmune Encephalitis

    Be a part of the solution by supporting IAES with a donation today.

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    MAY IS MENTAL HEALTH MONTH

    MAY IS MENTAL HEALTH MONTH

    May 30, 2018 | Barbara Vujaklija, RN

     

    Although Autoimmune Encephalitis (AE) is a neurological disorder, we all know that there is a large mental health aspect to the illness. From mild psychosis to patients who end up in the Psychiatric system instead of the medical system. We all have our stories to tell, some suffer from mental health issues more than others depending on the type of autoimmune encephalitis one has and the level of severity.  With adults, psychosis is a prominent symptom at the beginning of the disease and with children seizures play a dominant role in symptom onset.  Recent research has uncovered that genetics plays a role in LGI1 limbic encephalitis.  The type of antibody you have has distinct symptoms and syndromes that occur.  

    All I know for sure is that most of us as caregivers or warriors have dealt with some form of mental health issue. According to the National Institute for Mental Health (NIMH) Fact sheet on First Episode Psychosis (FEP), the word Psychosis is used to describe conditions that affect the mind, where there has been some loss of contact with reality. Psychosis can be a symptom of a mental illness or a physical condition. There lies a major problem for us neurologically challenged warriors as so many uneducated doctors make the mistake of assuming the former and not considering the later. Psychosis can include visual, auditory and tactile hallucinations. Also smell and taste can be involved. I often felt like I had a mask or web on my face, when I wasn’t hearing voices or seeing the color peach in blobs everywhere I looked. FEP can also include paranoia and delusions. Delusions are when you believe in something that is not real even when presented with the facts. Disordered thoughts and speech can also be included in the term psychosis. My tip for surviving FEP is to make sure that your loved ones and those around you understand that you are not dangerous and how they are expected to respond.

    Tips for loved ones based on my nursing training and personal experience.

     • Don’t overreact. The victim of Psychosis can pick up on your emotions, if you panic so will they. Don’t take anything said in this state personally.

    • Listen non-judgmentally, the feelings are real. Ask “What can I do to help” or “Can you tell me more”. DO NOT dispute your loved ones ‘reality’. This is all ‘real’ to them. You can say that you do not hear or see what the person is experiencing.

    • Speak slowly and simply, ask one question at a time. DO NOT treat them as if they are not in the room if speaking to someone else. The person in psychosis can hear you through their delusion and this behavior may lead to paranoia.

    • Don’t threaten, especially if dealing with a child, although adults should not be treated this way either. The behavior is not intentional or bad. Stay at eye level don’t hover over the person in psychosis as this may present you as a threat.

    • Stay positive and reinforce that they are receiving help. Keep yourself positive and comforting. Above all believe your loved one. What they are experiencing is real to them and no amount of denial on your part will change that and only serve to alienate you to them.

    The other major mental health issue for AE warriors is depression. Depression occurs as a part of AE. The autoimmune attack on the brain causes the chemical imbalance that results in AE. You are not just depressed because you have a rare chronic disorder. Why is this distinction important? Because the cure for the depression is curing or controlling the AE. Antidepressant medications can help short term while the autoimmune system is being controlled but should not be necessary long term. Although some people do experience primary depression after the AE is controlled because they have a chronic illness.  Be aware that some of the medication taken for secondary effects of AE can cause the chemical imbalance. However, it is an important distinction in the acute phase of the disorder.  that are prescribed for psychosis should be avoided with autoimmune encephalitis, especially in the cases on anti-NMDAr encephalitis.

    The NIMH recognizes several types of depression but the most common type that presents with AE is Psychotic Depression, mixing some form of psychosis with depressed mood. Most often the delusions take the form of depressive subjects. Such as poverty, illness or guilt especially over illness. We have had a few members with autoimmune encephalitis who have committed suicide, so if you feel like harming yourself talk to someone immediately.  If you are a care giver,  watch your warrior closely for signs that depression may include thoughts of self-harm. The usual treatment for AE induced FEP and depression is IV steroids which are then tapered after a steroid sparing agent has been brought to full dose and effectively supporting the patient by suppressing the immune system.  Short term anti-depressants and anti-psychotics may be used to alleviate symptoms until immunosuppression has been achieved.

    However, the NIMH does offer some tips that may help with depression during treatment.

    • Try to be active and exercise as this increases blood flow to the brain.

    • Set realistic goals for yourself.

    • Try to spend time with other people and confide in a trusted friend or relative.

    • Try not to isolate yourself and let others help you.

    • Expect your mood to improve gradually not immediately. Report feelings of self-harm to someone immediately.

    • Postpone important decisions, such as getting married or divorced, or changing jobs until you feel better.

    • Discuss decisions with others who know you well and have a more objective view of your situation.

    • Continue to educate yourself about depression. (I would add also about AE.)

    To sum up, while these mental health issues are an aspect of AE and not separate from the disorder and while short term medications may relieve symptoms while waiting for the immune system to become suppressed, the only real fix is to fix the AE.


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    EREN’S STORY ~ A Small and Mighty anti-NMDAr Warrior

    EREN’S STORY ~ A Small and Mighty anti-NMDAr Warrior

    May 24, 2018 | Adriane Lugo

    As a Mother of 5 children, I was used to juggling schedules filled with homework, school projects and activities, nursing one of my children when they fell sick with the usual childhood cold or flu and working evenings. None of those skills prepared me for that terrifying day last October 2017 when I found my 3-year-old son, Eren, non-responsive. He was rushed to the hospital. He was admitted into ICU.

    Many people do not know what autoimmune encephalitis is. I was one of them.  The neurologist informed us, as our son was in ICU, that he suspected anti-NMDAr encephalitis. I became overwhelmed with fear. As the doctors noticed the fear on my face, they tried to calm me and explain further.  I was in such shock, I couldn’t absorb much of what they were telling me.  Eren’s results came back, he had tested positive for antibodies against the NR1 subunit of the NMDAR. The diagnosis of anti-NMDAr encephalitis was now confirmed.  During Eren’s hospital stay he was given 5 days of IVIG. After he was discharged from the hospital, he received 10 days of steroids.

     (Pictured: Eren receiving 4th infusion of IVIG in hospital.)

    This disease turned our lives upside down. The worst part is not knowing what to expect. I watch his every move and question every fever and cold, wondering if this disease is coming back. Remembering images of Eren in ICU still plague me. The tantrums and the medications, what’s normal now? I continued to wonder. 

     (Video of Eren filmed between Filmed October 29th – November 4th 2017.  A dramatic depiction of his anti-NMDAr AE)

    It wasn’t until early January when I found International Autoimmune Encephalitis Society that I no longer felt alone.  I could rely on the volunteers within the organization and fellow members of their support group to help me understand what was happening and what to do.  After receiving steroids, Keppra and IVIG in November Eren was improved and the doctor did not feel that any further treatments were necessary. But I began to question this and remained super vigilant.  IAES provided information about how anti-NMDAr was treated and Eren had only had two of the treatments of first line therapy in the protocol.

    By April I started noticing that Eren was becoming extremely emotional and at times would burst into tears unwarranted. He then began to experience insomnia. He would tell me he was tired but was having trouble going to sleep. He wanted to go to sleep but sleep would not come. I contacted IAES and reported these symptoms in their educational support group. Receiving confirmation that these were symptoms of anti-NMDAr and being asked what his treatment plan was caused me true worry. Eren didn’t have a treatment plan and from what I was learning from IAES, he should have one.

    The neurologist didn’t schedule a follow-up after Eren’s treatment ended.  He gave us his card and said to call if we notice any big changes in Eren. We were told that clinically he was doing better. I contacted IAES for help because the doctor felt that waiting to see how Eren did and treating only when his symptoms became severe was the best course to take. Based on what I reported to IAES, they agreed that our feelings about getting a second opinion were strongly justified. They explained that Eren was experiencing symptoms and according to research by experts in the field should be receiving additional treatment. They recommended a doctor with expertise close to our home and directed me to their doctor’s list.  We were able to get an appointment relatively quickly much to my relief as I understand many experts have waiting list that are 6 months long.

    As I write, I can share that we Just came back from an appointment with one of the doctors on the IAES Doctor’s list. I feel so much relief!  She is going to do an evaluation on our son next week, so she can see where he is and what the next steps should be. I feel like a black cloud has been removed from above me. I finally feel like there is hope for my boy. Thank you IAES!   we would be lost without you!


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    International Autoimmune Encephalitis Society (IAES) is a Family/Patient centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey.

    Driven by the knowledge that “Education is Power”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premiere organization leading in these vital roles.

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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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