"Living with Autoimmune Encephalopathy"
Elaine's story with autoimmune encephalopathy begins in March of 2005. After a series of unexplained and misdiagnosed symptoms, three months of hospital stays and ambulance trips, and a series of seizures, it was finally determined that she suffered from Hashimoto's encephalopathy. The treatments she received were five days of high dose, IV Solu-Medrol, prednisone (tapered slowly until 2007), Imuran at 150 mg, and Keppra.
She started taking Synthroid pre-diagnosis and continues on the same dosage to this day. Imuran has kept Elaine in remission and most recently, she has very slowly weaned off Imuran to see if remission can be maintained without the immune suppression. Due to bone loss, she started Didrocal in 2006 and stopped in 2011. The Keppra was stopped in 2007 after being seizure-free.
Elaine has a family history of autoimmune diseases, which included her father having celiac disease. Elaine was diagnosed with irritable bowel syndrome (IBS) twenty years prior to her HE diagnosis and has followed a self-imposed gluten-free diet since 2005. Elaine feels that undiagnosed celiac disease was a contributing factor to all other autoimmune related issues that she has experienced. She takes 5000 IU's of vitamin D and assorted multivitamins.
What Elaine considered normal prior to her HE is no longer. Her new "normal" is a few symptoms that remain and are part of her every day living. These symptoms or "flares", are increased when stressed, overtired or excited. These are a few of Elaine's physical symptoms that exist both acutely and chronically:
Elaine's headaches are often accompanied by nausea and sometimes become migraines over the left temple. Her headaches can be weather- sensitive and she may feel a dull headache for several days in a row with short, painful spikes in the day. These spikes wake her up during the night but do subside with time. Treatment is a combination of rest, non-prescription pain medications and caffeine.
She experiences small muscle twitching, like around the eye, however, occasionally there can be uncontrollable large muscles twitching as well.
She has internal "shivering" that feels like electricity running through her center. These shivers are not outwardly visible and are endured for several days. Although she is more aware of them at night, Elaine cannot identify any particular time that these occurrences will happen.
She is very easily stressed, irritable, and prone to anxiety attacks. Anxiety triggers her irritable bowel condition, causes stomach pains, as well as sweating and breathing problems. She can have an anxiety attack, for example, when driving out of the community, or being stuck in traffic. Symptoms are managed through careful planning of activities.
She cannot be in the sun for long periods uncovered, or will experience dermatitis that is painful and sensitive for several days. Elaine is careful to seek shade often and wear appropriate clothing during outdoor activities.
Light & Noise Sensitivity
Elaine cannot tolerate places with an excess of stimulation. For example: concerts, or busy shopping malls where there are many people. Sounds and lights will cause her to lose her footing and balance. These kinds of activities need to be carefully managed with easy exit access, patience and time to let the anxious feeling subside.
Dizziness can often make her feel off-center, nauseous, and experience lack of visual focus with flashing or twinkling in the visual peripheries. It will pass on its own with quiet time, or with non-prescription pain medications.
She experiences severe lower back pain as well as pain in her joints. Elaine's doctors confirm that her arthritic pain is worsened by the bone density loss that was experienced over years of HE therapeutic medications.
Bone Density Loss
This is related to steroid therapy and causes bone weakness, arthritic pain, and longer healing time from injury.
Her IBS can be worse in mornings and worsens further with the slightest excitable situation. For this reason, she requires planning for any trips she may need to make. She must take her time in the morning to eat, as she often feels nausea. This is especially prevalent when eating too soon after waking. Elaine must carefully manage how she starts each day to maintain consistency. Maintaining the gluten-free diet has been very positive.
Colds and Flu
It takes typically two weeks longer for Elaine to overcome these common ailments.
She has developed eczema, cold sores, and many new spots on her skin.
Elaine has experienced issues with memory loss, both short and long-term. Compared to her previous ability to retain information, analyze and act, Elaine has limitations with her current state. This can range from simple tasks around the house, but is especially prevalent when holiday planning, or for larger events. She benefits from lists, notes and advance planning. Elaine must be vigilant when an event combines heightened levels of excitement, as she must also manage her anxiety levels, along with decrease memory capability.
Due to her issues with memory loss, Elaine finds reading enjoyable if she is able to focus on it solely. Otherwise, she is not able to retain the story.
Elaine easily loses her train of thought and has to backtrack, for example, when following a recipe.
She finds any sort of multitasking is not successful and benefits from being able to focus her efforts on one task at a time.
Every second week or so she finds she is very tired.
Elaine finds that communicating in a large group setting is difficult. She can no longer convey her thoughts without losing words of description. Symptoms of anxiety make this issue worse.
She experiences times where she cannot find the words or uses the wrong words, causing her to stutter. This happens more frequently if she is overtired, stressed, or not physically well.
Elaine does not have a restful or consistent sleep pattern. Interruptions are common due to pain, worry, and overactive thoughts. She has not found any consistent way to manage her sleep.
Elaine finds that she is more sensitive in emotional situations than she was prior to her HE diagnosis. She is very quick- tempered and can have extreme anger over small things. She also experiences an inability to let go of thoughts and emotions, ruminating on them for longer than necessary and causing further tension and worry.
Elaine is able to function with many day-to-day activities that are related to general upkeep and maintenance of her home, her family, and herself. Activities and social interactions need to be planned, mentally prepared for and to be in a calm, safe setting. She feels that her new "normal" allows her to be articulate and thoughtful, though that these are not at the same level as she was prior to her illness.
Elaine feels her success lies within the positive ways she spends her time. She enjoys being outside; gardening, painting and walking. She spends time with her family. Occasionally she will volunteer for community committees and support groups. She enjoys art, feng shui, and decorating. She tries to be physically active daily, and practices reiki, yoga and meditation. She believes in holistic medicine, such as acupuncture for pain, and goes to physical therapy and counseling to help manage her symptoms. Normal for Elaine is now about managing her care, and keeping her disease in remission, in order to live a full and meaningful life.
In her own words
I was diagnosed in 2005 with this mysterious and ever changing auto-immune condition called Hashimoto’s Encephalopathy (H.E.), and I am proud to say that I am managing well and soon to be 65 years old! I have been so fortunate to be here for this long and that my medical team has chosen to stick to keeping me healthy. I have immense gratitude to my Neurologist, Dr. Murphy, for keeping such a close eye on me and my symptoms and altering my medications where needed.
Basically, my maintenance protocol has been to do bloodwork on a monthly basis. It includes the general CBC, creatinine measures, thyroglobulin, thyroglobulin antibodies, and antithyroid antibodies (peroxidase). On a quarterly basis a review of my blood analysis for general thyroid health is completed, which has not seen significant change since 2005.
My treatment at the onset of the disease was with high dose IV Prednisone, followed by a two-year, slow reduction to 0 mg, coupled with a start of Imuran at the same time which was increased by 50mg at a time to 150mg. This protocol was successful for me. From the onset I was also on Keppra for seizures for the same two-year period. After the first two years, I stayed on 150mg Imuran daily till the first reduction trial in 2011. Unfortunately, that trial failed. The second attempt was a very gradual reduction of Imuran to success for almost one-year in 2014. A very stressful event caused some relapse which was treated by increasing the Imuran slowly back to 100mg. Once my symptoms stabilized, and under the guidance of my team, we slowly reduced the Imuran to a maintenance level of 50mg, which is where I am today. At some point we may again try to reduce to 0 mg.
In addition to the 50 mg of Imuran, I take 100mcg of Synthroid. I also try to remember to take vitamin D and a multivitamin with occasional spurts of other vitamins. I am Celiac and thus eat gluten free, and more recently, grain free, which seems be to suit me well and settle my additional stomach turbulence.
I am doing quite well as I write this, which is in the middle of the coronavirus epidemic, deeply impacting all of us. Life is not as it was prior to 2005. And life is not as it was when the original story was written. I have improved. I still have some memory issues. I have low resistance to general viruses and infections. I have headaches, but less so after going grain free. I have some visual disturbances on rare occasions which I cannot identify confidently with a medical term. I have “flooding”. I have anxiety. I do not care for large events or even small ones depending on the group. I have speech disturbances when I am stressed. So generally, I have many of the same issues that were listed before and that many of us have.
I have few other issues to add to H.E; my deteriorating bones are painful and troublesome. A vehicle accident has left my neck with an injury. Eczema has showed up lately in a big way. These unrelated circumstances trigger H.E. symptoms to appear, as they add to my stress level and discomfort.
In the past I would panic, thinking that surely when some of my symptoms showed up, this was a major relapse and would land me back in hospital. Now, I know that this too shall pass, and work through it with my own coping mechanisms which include, but are not limited to, breath work, yoga, walking, alone-time, and rest.
My greatest joy and support come from my family. I recently became a grandma for the first time, and being a part of that little life is something that I am extremely grateful for. I have some general interests like creating art, yoga, being in nature, and meditation - all inconsistently, as the disease and my energy levels allow. I have learned a new way of being that is mindful of my tolerance for what I know to be my instigators. I must be vigilant in my self-care, even when I see no reward from it. I have learned that small steps, consistently, do impact my wellness and how I am able to manage the disease.
Updated Patient Stories:How are they now?
ABOUT UNDERSTANDING HASHIMOTO'S ENCEPHALOPATHY 2016 EDITION
Understanding Hashimoto's Encephalopathy 2016 Edition: An Expanded and Updated Guide for Patients, Families, and Caregivers is the second book HESA has written about this rare autoimmune disease. Hashimoto's Encephalopathy ("HE"), often referred to as Steroid Responsive Encephalopathy Associated with Thyroiditis ("SREAT"), strikes people of all ages, in all walks of life, and takes a devastating toll on patients and their loved ones. This poorly understood disease continues to puzzle physicians and researchers around the globe. As a result, patients with HE often remain undiagnosed for months or even years, if they are lucky enough to be diagnosed at all.
In this book, readers will learn the symptoms, diagnostic criteria and challenges, and treatment options for HE, as well as the scientific theories regarding the causes and diagnostic markers of the disease. Throughout the book the reader will find citations and Internet links to scientific articles about HE/SREAT published between 2010 and 2016. New in this expanded edition are interviews with some of the most highly respected clinicians in the world in which they share their knowledge and experience with both researching HE and treating patients with the disease. Additionally, this edition includes tips for living with HE, and an extensive glossary of related terms, acronyms, and medications.
At the heart of the book, as was in the first book, are first-person narratives written by HE patients and caregivers around the world, which provide the reader with a glimpse into daily life with the debilitating effects of HE. Patients describe their symptoms, their struggle to find a diagnosis, and their treatment experiences. A separate section is devoted to the stories of pediatric HE/SREAT patients, as told by their parents.
Understanding Hashimoto's Encephalopathy offers a comprehensive picture of HE/SREAT that is helpful for physicians, while written in language accessible to the layperson.
DISCLAIMER: As with all books, Understanding Hashimoto's Encephalopathy is not intended to be and should not be considered to constitute medical advice.