Author, Speaker Jackie Stebbins on Rebuilding Her Life After Autoimmune Encephalitis

Episode Transcript

Dr. Correa:
From the American Academy of Neurology, I'm Dr. Daniel Correa.

Dr. Nath:
And I'm Dr. Audrey Nath.

Dr. Correa:
This is the Brain & Life podcast. Today we are continuing our discussion with people thriving despite dealing with a condition called autoimmune encephalitis. We've only talked about this condition one other time, so we are excited to bring you another story to illustrate the hope for people living with this life altering experience. In our previous episodes, we featured Brain on Fire author Susannah Cahalan, and the expert who discovered one of the antibodies causing this condition, Dr. Dalmau. In that episode, Dr. Dalmau gave us a basic understanding of the condition and the science. And today, after our interview with Jackie Stebbins, our medical expert, Dr. Gregory Day, will share more information about the diagnosis, treatment, and many of the other possible causes of autoimmune encephalitis. Please stay tuned and listen to the whole episode. This is really an important condition to learn about.
And also, in our upcoming episodes on April 20th, we will rerelease our episode with BJ Miller and added content to learn about phantom limb pain. In the following week, April 27th, we will talk to Julie and Alan Patterson about dealing with Parkinson's disease in their family and their experience working as contractors and builders in helping develop an adaptive housing plan for people with Parkinson's and other mobility limiting conditions.

Dr. Nath:
Today I am joined by someone that I met on Twitter, Jackie Stebbins, who was a trial lawyer and now an advocate for autoimmune encephalitis. She's going to tell us about it in her own words. She details her journey in the book Unwillable, and it's great and really well written, and talks about how she was crushing it as a lawyer, and she had bought her lawyer car and all of that before all these symptoms started and turned her life around. Now she speaks about autoimmune encephalitis as a motivational speaker. She is host of the Brain Fever Podcast, which you guys should check out. It's really great. And she's author of the JM Stebbins Blog. Welcome to the podcast, Jackie.

Jackie Stebbins:
Dr. Nath, thank you so much for having me. It is an honor and a privilege to be here today.

Dr. Nath:
So I want to hear about this from the beginning. I know it's in your book, and everybody should hopefully read it. It's covered with Elton John quotes. It's awesome. Essentially, you were in this really high stress job as a trial lawyer, which I can only imagine. And so the symptoms you had in the beginning were kind of easy to chalk up to I must be burned out. Tell me about that. Did you think there was something different happening there in your heart of hearts? Or was it really hard to know?

Jackie Stebbins:
It's so hard now, I'm almost five years away from my diagnosis. And the nice thing about this book is it's now a repository for all of the bad memories. And it feels like the story of what happened is kind of locked away in that book. But when I take that step back or I dig a little beneath the surface, I remember that's not ... I didn't write that about a woman. That's not a work of fiction. That is about me. So with the benefit of high insight, I think there were some of the problems I was facing and the symptoms I was having probably didn't really fit that mold of depression or anxiety. But I'm always quick to say I offer no ill will or resentment to anyone that saw me really leading up to when the AE took over and spiraled out of control.

Dr. Nath:
AE being autoimmune encephalitis, which we'll get into more.

Jackie Stebbins:
At the time, Dr. Nath, I think it was. It made sense to say, "I'm depressed. I'm burning out. I'm working so hard." And I think we all want easy answers. Right? And that's what I wanted. I'm a trial lawyer. I have two little kids at home. My husband stays at home with my kids. I'm a workaholic. I need to keep working. Give me a quick fix. Oh, okay, I'm depressed. Other lawyers are depressed. Maybe I can take some medication and just move on. So I think with the benefit of high insight, the symptoms were odd, but it was such a protracted onset and it started so suddenly, it was just hard to get ahold of.

Dr. Nath:
Tell us what you mean. What were you experiencing?

Jackie Stebbins:
Absolutely. So how it really started was the fall of 2017, I woke up one morning. It was right after the time change. I woke up at 4:00 AM. It was almost like someone had set an alarm clock in my mind. It was really odd, but I moved on, no big deal. I was usually up at 5:00 AM to go swimming or to start working. So I'm getting these weird early morning wake up calls, and they continued. Every morning, 4:00 AM, I was waking up. And it went from just kind of annoying, to tiring, to very exhausting. And by about January or February of 2018, I said, "What the heck? Is this my hormones?" That was another easy answer, quick fix. But by March, I went from interrupted sleep to I can't sleep. I turned into an insomniac. And no sleep can make any good person go bad really quickly.

Dr. Nath:
Absolutely. Yes.

Jackie Stebbins:
So it's already been fairly prolonged. I'm tired. I'm exhausted. Now I'm an insomniac. From there, in April, I started to notice that I had tremors in my hands. I was really clenching my jaw, and that's when I started to hear a white noise just kind of playing on loop in my ears. And by the end of April, I started to feel like an empty shell of my former self.

Dr. Nath:
Wow. Were you still working as a trial lawyer with all of this happening, as your jaw's clenching and your fingers are shaking?

Jackie Stebbins:
I was. And by the first few days of May, I was absolutely hanging on. And I know I say in my book I was competent until the day I left. And I think it was part good luck, part the pull of the universe, and I knew I had to go. So by May 8th, it was a Tuesday, I finally had looked at my partner, I had a panic attack that afternoon at my desk by myself.

Dr. Nath:
Oh, boy.

Jackie Stebbins:
But I didn't really realize it for what it was. I called my husband. He sensed the desperation in my voice. And I asked him if he would just come and take me to the hospital. And I'm a trial lawyer, I'm dramatic, I can exaggerate. But that was an unlikely request.

Dr. Nath:
I bet, yeah.

Jackie Stebbins:
And I went to this meeting, so I literally was laying my head on my desk and I called my husband on speakerphone. I picked my head up and I managed to make it to this important meeting. It was a selection committee to appoint a judge, so it was this very important meeting.

Dr. Nath:
Oh, wow.

Jackie Stebbins:
I was taking it very seriously. I managed to walk the block to the courthouse, get through the meeting and walk back. And then I looked at my law partner and I said the same thing. I said, "I just wish you would take me to the hospital." So I can already sense that desperation really boiling over. By May 8th, it was a Tuesday, I left early that day. I thought it was depression and anxiety. I said, "Just give me one week. I'll take a week off. I'll be back. No big deal." I never returned to my office, my law firm, or the practice of law.

Dr. Nath:
And then what is the next thing you remember? Because I was struck by this in the book. Did you lose some time?

Jackie Stebbins:
I lose about a month and a half. I lose from about the time I step out the door at the Stebbins Mulloy Law Firm, it all pretty much goes black. I have a little memory until I check myself voluntarily into the psychiatric ward, only six days after I leave the law firm. And I did a 48 hour hold there. I really don't have a lot of memories. And then it's pretty much pitch black until I get some steroids and my brain turns back on.

Dr. Nath:
That is just hard to imagine. So basically from that six week period, you have to get that from other people, who have to report back to you later like, "Hey, here's what happened for this chunk of time that you lost." Take us through a little bit about what you know. It's wild.

Jackie Stebbins:
Amnesia is really weird, and I'm sure you know more about it than I do. I can only have this firsthand experience. It's so odd to know that there's this period of your life where I was there the night of my grand mal seizure that landed me into the hospital and was mostly the grand finale of the AE presentation. I wake up from this grand mal seizure, of which I'll never have memory. I'm speaking in word salad. There are four firemen in my bedroom and two EMTs, and my mom is by me on the bed, and my husband. When you think about that, it's like I was the star of that show. And I have absolutely no memory, and I never will. And then I'm changed from the fireman's board in my front yard to the ambulance board. I'm boarded into the ambulance, driven right into the ER at the hospital. And this starts my hospital stay.
So it's really unbelievable I guess is the only way I can describe it, to lose all this time. But in some ways, I guess the further I get away from it and the more I talk to others who have this same diagnosis, I have some small memories in the psych ward, little teeny bits in the hospital. So yeah, I had to rely so much on my mom and my husband to piece together the climax of the book.

Dr. Nath:
Yeah, because you were there, but you kind of weren't. And it makes sense for a neurological perspective. When we talk about autoimmune encephalitis, which is an autoimmune process, so basically the body makes antibodies that attack the brain. Oftentimes, they attack the part of the brain, the hippocampus, or that mesial temporal lobe, which is just a fancy way of kind of saying where the hippocampus is. That's a part of the brain you need to form memories. So it can absolutely happen that people lose chunks of time because of that attack on the hippocampus. So your story checks out that you had memory loss and seizure activity, which can also be caused from the antibodies attacking the brain. You didn't know this was happening at the time, but now it all makes sense. So during that hospitalization, they must have been doing tons of tests, I would guess, blood and lumbar puncture and imaging and EEGs probably. You may or may not remember any of this. But then they figured it out. Right?

Jackie Stebbins:
So my story is a little bit unique in that way, Dr. Nath. I had a three day workup. So what happened was after I got out of the psychiatric unit, about a week later, I went to a followup appointment with a nurse practitioner in the behavioral health department. And that woman, her name is Stephanie McDonald, Dr. Nath, she saved my life because she took one look at me and said, "This is not a behavioral problem. This is a neurological problem." And at that point, my husband walked me into that appointment. I wasn't thinking linearly. She said I was very agitated. I was pulling. I had all these odd movements in my hands. I was hardly ambulatory. So thankfully, my neurological symptoms had become so overt that there was no more question. There was something wrong with my brain.

Dr. Nath:
How much time had elapsed from the initial presentation?

Jackie Stebbins:
That was May 21st. So I left work on May 8th. I was actually in court for the last time on May 3rd, so once the AE took hold, it absolutely overtook my mind, my body, my spirit. So it's May 21st, I see Stephanie. And she says, "There is a neurological problem." Of course, my husband panics. He's thinking, "Oh, my gosh. She has a brain tumor." So it's all hands on deck, all of a sudden, all of our family's there. My mom's cousin had died of a brain tumor, and that's where her mind went.

Dr. Nath:
Oh, man.

Jackie Stebbins:
So Stephanie lobbied so hard to get me in to see a neurologist. She was very adamant that this young woman will die. I was only 34 years old. So she said, "This woman will die. You have to see her." So Dr. Dunnigan, my neurologist, saw me the next day. And that began my three-day workup. So I met with him, did a neurological exam, which I failed with flying colors, and my cognitive assessment, definitely got an F on those tests. Then the next day, they did brain imaging and he reported back that my brain looked good, which was wonderful news to my family. And then the third day, they did the spinal tap, and it was then that I had the grand mal seizure that landed me in the hospital. But it was over Memorial Day weekend, and my neurologist, who had started the workup, was gone. And from what I understand, it was just a lot of confusion and hurry up and wait.

Dr. Nath:
Yes, exactly. Unfortunately, this can go on for even longer because like you were saying, when the antibodies attack the brain, there are many kind of mood symptoms or psychosis even, hallucinations that can happen. And I think as time passes, there is a lot more awareness of autoimmune encephalitis. And so now when we see a younger person that has a very sudden onset of psychosis or things like that, it is higher on our list of things. But five years ago, it might not have been. And so that's why I'm really glad you're out and publicly talking about this because the more people that know, that's one more diagnosis that's going to be made, and that will really help somebody. But essentially, yes, it can be really tough to know in the beginning what's going on.

Jackie Stebbins:
Absolutely. I always say that autoimmune encephalitis is a sneaky psychiatric chameleon.

Dr. Nath:
I like that.

Jackie Stebbins:
It did present very seriously psychiatric with me. I was paranoid. I was hallucinating. I saw gray waves of dead people floating above me when I was in bed.

Dr. Nath:
That's terrifying. You remember this?

Jackie Stebbins:
I do remember it enough. I was in bed and my arms were just out at my side and I was asking my husband, "What's wrong? Am I dying?" So something told me it was terrifying. I still carry a lot of PTSD to this day, honestly. It's this time of year, unfortunately, as I gradually embarked upon this descent into madness, March, April, May, I can just feel it. So I still have a lot of PTSD, a lot of triggers from what happened in this home. I'm in my very home. I had a seizure in my bed. I was wandering around hallucinating and paranoid in this house, so it's hard to get away from it.

Dr. Nath:
What were your kids doing in this time? Or what did they think was happening?

Jackie Stebbins:
My children were only five and three, and I tell people, I mean, there's no real way around it. I lost my mind in front of my children. So my daughter was still in preschool. My little boy wasn't even potty trained yet. I mean, they were so little. I think my daughter, the oldest, was aware that something was very wrong with mom. Per my husband, they would say, "Mom, watch this," like little kids do. And I would only stare, I couldn't even engage with them. And I had to learn, Dr. Nath, as my husband and mom replayed the situation for me, I had to kind of relearn that my kids visited me in the psychiatric ward, and that I detail that in the book. So it was very hard for them, we believe that my daughter saw the firemen coming in and out. So it was a lot for my children, and obviously, they'll learn more as they grow. But right now, we've just started to talk to them, to say that there was a point where Mom was sick and something happened to her brain, but Mom is doing much better now.

Dr. Nath:
And there's a third kid now.

Jackie Stebbins:
And the surprise ending to the book is after all of this happens, we find out if AE wasn't the surprise of a lifetime, a baby post AE is another surprise of a lifetime, so I have a miracle AE baby and her initials are A.E.

Dr. Nath:
I want to talk a little bit about your diagnostic journey and conundrum because I want to explain this. So essentially, when autoimmune encephalitis happens, there are different types of antibodies that can attack the brain. And what we do is we try to figure out which one it is that's doing this. So it looks like they've checked your blood, and they did a spinal tap, and they checked your spinal fluid. And you were one of the rare people where they were not able to identify which antibody is attacking your brain. I'm sure there is one, it may just be one that hasn't been discovered yet, and maybe it will be the Jackie antibody when somebody does. How did you take in that news?

Jackie Stebbins:
I wish I could tell you, Dr. Nath. But unfortunately, AE, the onset was such a process for me and very protracted, and unfortunately, learning about what was affecting me and what had devastated and essentially shattered my life was actually also a very protracted period. When your brain is that impaired, you can't even understand. And the way I describe it in the book is I just have a vague memory. I'm sitting at the kitchen table. I can feel my mom kind of in the kitchen, and my husband, and that's a lot of ... The memories I do have are kind of like that. They're very fragmented and blurry. My mom was essentially living with us at that point. And I remember I was very preoccupied and hung up on the idea that I had been in the psychiatric ward. I was asking them questions.
And it was almost as if a cartoon, where there's a light bulb above, and someone pulls the chain, and it was like, "Oh," I had this moment where they said, "Jackie, you didn't belong in the psychiatric ward. It was the autoimmune encephalitis." And that was one of the first days I feel like I remember them saying to words and it started to click that I was learning that I had this illness. And that's when I became vaguely aware that there was this book that this woman had written. Of course, it was Brain on Fire by Susannah Cahalan.

Dr. Nath:
Susannah, she's fantastic.

Jackie Stebbins:
She is amazing. And my neurologist referenced that book to my family in my diagnosis. Susannah's book helped save my life, and I've been able to thank her for that, which was just monumental.

Dr. Nath:
So I want to touch on something that's more applicable to all kinds of conditions. Essentially, you talk about in your book the three Rs. And I really like this. I want people to hear about it. Survive, there's an R in there, recovery, and rebuild. And you're someone that went from being a trial lawyer and buying the lawyer car, to a totally different life and a really cool life, I think. How do you describe how you're able to basically restart?

Jackie Stebbins:
It has been a process. I'm not lying when I say I think I'm at the tail end. I think I finally completely rebuilt my life. But it has definitely taken all of these years. So the night of my seizure was May 26th of 2018. And since then, I was trying to survive and literally just stay alive. For the first year, Dr. Nath, I honestly believed that I was just going to tip over dead. I was terrified of my mortality. I am trying to heal a broken brain. I went from being a very chatty, argumentative trial lawyer, gregarious person, to someone who couldn't leave her own house, who wasn't even comfortable to have a conversation. I knew I couldn't participate, so I didn't want people to see me the way I was. I knew they expected the old Jackie, and they weren't going to get her. And then I think after that first year was when the recovery started.

Dr. Nath:
Second R. Cool. Yeah.

Jackie Stebbins:
Yep. I went from my dream job, I owned my own law firm, I was a workaholic. I loved what I did. I was very successful. I was nationally recognized. It was my whole dream since I was a little kid. And to have that stripped from me with no knowledge, no consent, no notice, it was just gone, and then I wake up and find out I'm sick, fragile, afraid of death. To even start that recovery period, it was like, "Where do I even go? How do I even put one foot in front of the other?" And that was when I told myself, "You can either succumb to depression and never get out of bed, or you can figure out a way." And I would be lying if I said when I first created JM Stebbins, I think it was to just make it be my old life and go back to the trial lawyer. And I'll have stationery with my name on it.
It was like I was trying desperately to take that life back that I admittedly knew I lost. So at the beginning, I'm not sure if I saw what I created as I do now. So now I'm in the third R. I've been doing this rebuilding. And JM Stebbins has grown past me. It is worldwide. My blog's worldwide. The podcast is worldwide.

Dr. Nath:
That's right. It is.

Jackie Stebbins:
I'm very active with the Encephalitis Society and the Autoimmune Encephalitis Alliance. I have contacts all over the world. Now this rebuild has turned into a dream that I didn't have when I was in fifth grade reading a John Grisham book, but it's become probably a more beautiful dream than I even could've envisioned.

Dr. Nath:
I love this. Tell our audience a little bit about some of the things that you just mentioned and how they can find you and access what you have been thinking about, as well as resources that you've been finding.

Jackie Stebbins:
Absolutely. So the Autoimmune Encephalitis Alliance based in the US has a wealth of information. I've done a lot of volunteer projects with them. And then the Encephalitis Society, based out of the UK, they are the global leaders in encephalitis. So one of the things I was able to accomplish in the past month was I worked with the governor's office in North Dakota, and he declared it Encephalitis Day, so February 22nd is now World Encephalitis Day and Encephalitis Day in North Dakota. I have a blog. I try to publish it each Tuesday. But when things like World Encephalitis Day come up, they set me back.

Dr. Nath:
JM Stebbins.

Jackie Stebbins:
The JB Stebbins Blog, yeah. So that's on my website, jmstebbins.com. I wrote Unwillable after that first year I survived. Unwillable I think was really the biggest part of my recovery and rebuild. You can find that on my website, unwillable.com. It's on Amazon. It's at Barnes and Noble. It's just a joy to see it out there in the world. The Brain Fever Podcast, my husband produces that. I love the podcast. That has a beautiful global reach. And what I think the most exciting part of what I believe I've created, Dr. Nath, is now when people reach out to me. I had a mother reach out to me a while back. Her son's so ill with AE in medical school, and he doesn't believe he can practice as a physician, heartbreaking. And she sought some of my thoughts and opinions.
I have had women reach out to me who want desperately to become pregnant after AE. And I know I can't guarantee them that. I am not a doctor. But I can give them some hope. I can listen to them. And I'm so proud to say that not too long ago, a woman shared with me her news that she was pregnant. And she said I was one of the first people that she told. And that was just so beautiful. So now with the blog and the book and the podcast, when people reach out to me and say, "I'm afraid of X, or I don't know what to do about Y," I now feel like I have so many tools in the toolbox, and I can say, "Hey, you know what, I had a wonderful guest on the podcast. You should listen to this episode."

Dr. Nath:
And it's a resource, yep.

Jackie Stebbins:
And it's another resource. So I am definitely not a psychiatrist, I'm not a neurologist. But with the little bit I can do from my personal experience and what I've learned from others, I feel like now I can share with others what maybe I didn't have when I was first diagnosed.

Dr. Nath:
Sounds like you were really in the dark, scared, confused. And you're beginning, and you're doing your part to try to give people a little bit of light at the beginning point, which you would've loved, and other people could appreciate now. Thank you so, so much for joining us. I love new Jackie. New Jackie is great.

Jackie Stebbins:
New Jackie's a little more tired, but you know what, I'm really proud of her. And I thank you so much for allowing me to be on this very important podcast.

Dr. Nath:
Can't get enough of the Brain & Life podcast? Keep the conversation going on social media when you follow @brainandlifemag or visit brainandlife.org. As your hosts, we would also like to hear from you on Twitter @NeuroDrCorrea and @AudreyNathMDPhD.

Dr. Correa:
Welcome back to the Brain & Life podcast. Today I'm joined for the medical expert portion of this discussion with Dr. Gregory Day. He's a neurologist and specialist in cognitive neurology at The Mayo Clinic. In addition to his time supporting the care of his patients and their caregivers, Dr. Day is active in clinical research. Within his research, he's working to study Alzheimer's disease, rapidly progressive dementia, autoimmune encephalitis, and autoimmune causes of cognitive impairment. Greg, we truly appreciate you taking time to spend with us here on the podcast.

Dr. Gregory Day:
Thank you, Daniel. Really appreciate the opportunity.

Dr. Correa:
So my cohost, Dr. Audrey Nath, just had an amazing interview with Jackie Stebbins. And we're hoping to get a little bit more context from you about autoimmune encephalitis today in our discussion. As some of our listeners may recall, in our first season, we had interviews Beth Usher about her challenges and her life early on with Rasmussen's encephalitis as a child and growing up, moving past that, and Susannah Cahalan, the author of Brain On Fire, who discusses and shares her journey with a new onset psychosis and seizures, also related to autoimmune encephalitis. So Greg, there's various different types of autoimmune encephalitis out there. How do we wrap our brains around that?

Dr. Gregory Day:
It's a great question. It's a complex topic, and it's one frankly that the answer to continues to change month on month, as we learn more about this really interesting subset of diseases. When we think about autoimmune encephalitis, I usually conceptualize of it as really an umbrella term, so a big term under which a number of different conditions, a growing number of conditions falls. We can kind of further divide things by these diseases that are associated with really specific antibodies, antibodies that we can detect in blood or sometimes in spinal fluid, that tend to have really specific targets, so perhaps a specific cell or a protein in the brain. And by attacking the protein, wherever it is in the brain, it can lead to dysfunction of the protein, dysfunction of the cell, and the symptoms that we see, the signs that we see in our patients and ultimately a lot of dysfunction.
There's another category of patients that don't have antibodies, or at least not antibodies that we can discover yet. And I think for many of those patients, the journey can be a bit more difficult. We're looking for that sort of positive test that says, "Ah-ha, I know exactly what this is." And even those patients can have very expansive testing, can look for antibodies and not find them. We'll call that zero negative autoimmune encephalitis. And typically, we hope to find some other evidence of inflammation, that's the encephalitis part, or brain on fire, if we're using a term that Susannah Cahalan popularized. We want to find some evidence of inflammation that suggests there's some immune activation. And ideally, in the best case scenario, we want to see our patients improve when we provide treatments that suppress elements of the immune system to reduce that inflammation or extinguish that brain on fire.
And so if we're thinking of things overall again, it's an inflammatory disease, typically a disease that's generated by the body against cells in the own body, sometimes with really specific markers, sometimes without any specific markers, but nonspecific features that we can look for like inflammation that we might see on a brain MRI, or inflammation in spinal fluid, and hopefully a response to treatment targeting inflammation.

Dr. Correa:
And a lot of this information, as you said, has been very new throughout neurology. And our listeners can go back to our episode and expert interview in the Susannah Cahalan episode where we interview Dr. Dalmau, and he shares with us some of the history of the discovery of various types of the autoimmune encephalitides, that plural name for that encephalitis. But Dr. Day, Greg, what was your early exposure to autoimmune encephalitis that drew your interest to help support these patients and the families living with it?

Dr. Gregory Day:
Well, when we retrace the history of these diseases, sort of in a timeframe that predates me and predates you, Daniel, we all both appreciate that neurologists and patients were pretty uncomfortable not having names for things. So rather than say, "I don't know what's causing this patient's symptom," we like to give it a term, give it some description, and maybe even think about mechanisms. And so if we go way back, well, people thought that this was perhaps related to an infection, a parainfectious etiology. And there's great literature on this, even back to the 19th century that talks about some of this.
Then we started to have a concept that maybe it could be related to other immune triggers like cancer cells, and so we thought about para encephalitis or viral encephalitis, thinking maybe there's a viral agent that we don't understand. And so when I think back to my first exposure, I recognized early on in medical school, in residencies, so this is back in early 2000s, I saw patients that ultimately would've had some form of autoimmune encephalitis, but perhaps we mis-characterized those patients. I called them viral encephalitis. We treated them much like we treat patients with autoimmune encephalitis now. And when they improved, or at least when they didn't get worse, we thought it seems to confirm this idea that there's a virus, the body fought it off, we reduced the inflammation, the patient recovered.
My earliest exposure to a case of definite autoimmune encephalitis was really around 2009, 2010, as a resident in Toronto when we had a patient who came in with new psychosis, insomnia, seizures, and the spinal fluid showed inflammation. There were changes on the brain MRI. And at that time, pretty much the only place in the world where we could get some comprehensive antibody testing done was through Dr. Dalmau's lab. We made arrangements, we sent spinal fluid, and we learned that was a patient with anti NMDA anti receptor antibodies, a very specific antibody targeting a very specific protein in the brain, and giving us a pathway both to understand the disease, but maybe most importantly, to start a treatment that would go on to help the patient. And so that was my first introduction, really at a formidable time in my training, where you see a patient that went from being so well to being so impaired, and then with the right diagnosis, with the right treatment, again, returning to doing very well over time.

Dr. Correa:
Wow. I mean, it's amazing and I'm so glad we're at an era where we're able to start to identify these things and help these individuals and their families, and not just write it off as another thing we can't treat and can't understand. Now you pointed out in several of these different types of autoimmune encephalitis, that there is an early onset of either a memory or cognitive change, or there is a new onset of a psychiatric diagnosis. How do we know at the beginning of that, that there's something more to be concerned with?

Dr. Gregory Day:
I think that is the question that rests heavy on all of the clinicians and certainly on families as they're seeking out help and support for a loved one who's experiencing some of these new symptoms. We recognize that when you're in your teens, when you're in your 20s, when you're in your 30s, life happens, there's a lot of other stresses that we deal with. Psychiatric illness is a very real, very, very tangible illness state, affects brain chemistry, leads to changes in behaviors, and certainly can mirror, can look almost exactly like autoimmune encephalitis at first presentation. So how do we separate out the two, recognizing that the treatments are ultimately going to be very different? And I guess if we have to summarize that in a word, I'd say carefully.
We do it very carefully, probably need to say a bit more about that, we also do it very intentionally. Patients that have first episode presentation with psychosis, so change in sort of their perception of reality, maybe associated with delusions, suspicions of other people, or misinterpretations, maybe some hallucinations, well, that is very abnormal. That's probably going to lead someone to come into the hospital. That initial medical investigation's going to be focused on identifying any perhaps causes, changes, or triggers for that, maybe exposures to substances, substances of abuse, maybe new medications, maybe an active infection, maybe something else going on in the body that gives a better explanation. But if not finding that, may lead someone to say, "Well, perhaps this is the first presentation of something like bipolar," as an example, bipolar affective disorder, or maybe a very severe form of depression, or maybe the first whispering symptoms of a disease like schizophrenia, another complex disease that starts often in the 20s in many people.
And if that's the case, well, we kind of expect that those patients may respond to some medications for treating that, and over time, symptoms may wax and wane. There might be some periods where things get worse, certainly some periods where things should get better. But if we're following that same patient, one who maybe we think has a primary psychiatric disorder, and a few days into that course, they're much worse, maybe they have a seizure, something that we really would say is very unexpected with psychiatric disease. That's where we need to stop and say, "Oh, well, maybe there's something else." Maybe there's an inflammatory disease. Maybe there's an antibody targeting specific proteins in the brain that would provide a better explanation. And that's a patient that certainly needs further investigations, probably including a brain MRI, maybe an EEG, recording brain waves, looking for electrical disturbances, another root cause for problems, and perhaps even analysis of spinal fluid, doing a spinal tap or lumbar puncture, so that we can look for evidence of inflammation and test for specific antibodies.
You mentioned Dr. Dalmau, who's done some incredible work in this field. And he's given us a blueprint, him and his team, actually on how to approach some of these patients as well. And I think the truth about it is that time is the best test we have, so following those patients carefully, following them intentionally, and then doing some of these initial tests like an MRI, like an EEG. If those are both normal and if the patient is sort of proceeding along an expected course, we probably don't have to do a lumbar puncture. But abnormalities on either of those things, particularly in a patient with new onset psychosis, those are the patients we want to order more tests on and include a lumbar puncture looking for disease specific antibodies.

Dr. Correa:
And unfortunately with many different neurologic conditions and mental health conditions, there can be a lot of stigma for the individual or in the community about those conditions. Are there ways that you think the the stigma that is out there in the community may delay diagnosis or delay the time that a person comes in to be evaluated, either by psychiatry, their primary care, or whoever is the doctors that first encounter these symptoms?

Dr. Gregory Day:
Absolutely. The reality is that people are uncomfortable discussing symptoms and signs that make them uncomfortable and make others uncomfortable. And definitely changes in emotional state are a set of those symptoms. This is where the work that's happened over the last decade has been very helpful, actually increasing recognition that there are specific causes of some of these symptoms allows the general medical field to really target those specific symptoms to do specific tests. And I think it informs the contributors to these symptoms. And while the vast majority of patients that experience new onset of psychiatric symptoms are going to have disorders, frankly, that are more common, like depression or bipolar affective disorder. And only a small minority are going to have autoimmune encephalitis. Well, that small minority with autoimmune encephalitis actually can teach us a lot about primary psychiatric disease.
If you have an antibody that targets the NMDA receptors, that's the glutamate receptor, really ubiquitous common receptor on many brain cells, and it produces hallucinations, psychosis, insomnia, seizures, and we can kind of learn from that and suggest that maybe dysregulation or disruption of that receptor function may play a role in schizophrenia or may play a role in other psychiatric disorders as well. And so I think that popularization, better understanding of autoimmune encephalitis, the causes, the contributors, are going to actually lead to a better understanding of psychiatric disease as well, as we move forward.
And the other part of this is we rely on our colleagues in psychiatry, our psychologists, mental health counselors, everyone plays a role in helping to manage these symptoms. And so moving past the stigma, if the cause is primary psychiatric disease, focusing on treatment of primary psychiatric disease, if it's autoimmune encephalitis, well, let's treat the inflammation. But guess what, we've still got a whole set of symptoms that fall in the primary psychiatric realm that can benefit from these conventional therapies from counseling, from expert advice. And so addressing that stigma, being upfront, getting people to talk about it, normalizing it as a part of this disease and a part of many other diseases are all tips that can help to bring those symptoms to light and ensure our patients get the care that they need.

Dr. Correa:
And as you said, for most people with new onset mental health symptoms, of the various different type of psychiatric symptoms, or new onset memory problems, or a cognitive condition, it's not going to end up being an autoimmune encephalitis. And thankfully, there are ways for rehab and management and treatment of those conditions. As you're in the process where someone is in treatment and starting to move towards recovery, what are some of the various different symptoms that you work with individuals and their families to help manage?

Dr. Gregory Day:
It's a highly individualized sort of question, so it really depends on the patient. And I think when we're thinking of our patients with autoimmune encephalitis, we're thinking of a range of patients. We may be seeing patients who are in the ICU at the time that the recovery first starts, the intensive care unit, maybe patients that actually are on machines to help them breathe, or to regulate their heart rate. And that first improvement might simply be opening of the eyes and following the family member or physician around the room, which is great when we first see that. And that's a patient who we know is going to have a long road to recovery from that serious and very severe illness, hopefully to getting off the breathing tube, out of the intensive care unit, onto the neurology floor, and then off to rehabilitation.
The flip side is the patient that has some really early symptoms, maybe one that's caught really early because they present. They have an early seizure and someone recognizes this as autoimmune encephalitis, starts treatment, and that patient might not need admission to hospital. And so in followup of either of those two patients, it's really on the clinicians, the team, to be screening for active symptoms that are common in recovery. And what we've learned through some dedicated studies that have actually gone to patients and their family members and said, "What's the most important symptom for you right now?" And have used some additional tests to screen function, we've learned that fatigue is very common in followup, and not often asked about.
And patients don't always volunteer it because the focus of the visit tends to be on something else, whether that's psychosis, or seizures, or walking and motor strength. Those are all important symptoms we have to screen for as well, and so we're going to ask about unusual motor activity, involuntary twitching, spasms of the arm or limb. How are patients doing with their balance, with their walking? Is there any problems with swallowing? Any changes in consciousness in any of those interrupted thoughts, and particularly things that might've started the illness, so that disruption in thinking, paranoia, hallucinations. If we identify those, that's all an area for us to maybe try some symptomatic management, some treatment. Of course, in some cases, could be a clue that maybe we still need more medications to treat inflammation if there's evidence of persistent inflammation.
And here's two other symptoms that I think are just so important that we screen actively for, depression, which can really present in many different ways, but so often with decreased interest in engagement, low energy, not wanting to be a part of things. And then the second symptom that I'm really active in screening for is sleep dysfunction. Anyone with young kids is going to appreciate right away the importance of a good night's sleep. And I think many people that don't have kids that may not have the best sleep habits know that they can have a rough day if they don't get enough sleep. We're all susceptible to that. That's even more true for our patients who are recovering from autoimmune encephalitis, effectively recovering from a serious inflammatory brain injury. And so screening for sleep, asking about the quality of sleep, looking for unusual things that might interfere with or cause someone not to get a good night's sleep, sleep disordered breathing presenting with snoring or witness periods of apnea, where they're maybe not breathing in the middle of the night.
Movements in the night can be very common in recovering patients. And those movements may be happening when someone's asleep, and may be severe enough to wake them up from sleep and interrupt their sleep. And that might be something that we need to treat. And so I like to really intentionally screen for those kinds of things. And we can include in that as well, insomnia, simply the inability to get to sleep, even though someone may feel very tired. All of those can be symptoms of a recovering brain and can give us as clinicians a hint that we need to be treating, targeting that, or engaging in other specialists to help with that.
I didn't really delve into the cognitive complaints, but we've also learned that if we're really asking people how are they doing, well, people often tell us that memory and speed of processing, just simply making those decisions, are two other areas that sometimes take the longest to recover. And I think there's increased interest in how can we improve that through our early treatments, maybe by treating these diseases more aggressively up front. And how can we also help that through therapy, cognitive therapy, counseling, developing techniques using tools in our recovering patients?

Dr. Correa:
Yeah, Jackie shared some of her own experience through the stages of managing the medical condition, its diagnosis, treatment and recovery, and some later return to activities in her book, and describes this mantra that helped her move forward, survive, recover, and rebuild. Continuing on a lot of what you described as sort of being in the rebuilding stage for individuals, are there any other things that you mention to them to sort of keep into perspective when they're thinking about returning to some of their past activities, or their family is pushing them to return to activities?

Dr. Gregory Day:
Sometimes patience is needed. I suppose it depends on who's doing the pushing and the advocacy. We definitely want to see our patients sort of test themselves and trial and not be too scared to get back out there if it's appropriate. Doing everything with a good measure of patience though is key. And that means creating situations, supporting scenarios where our patients are likely to succeed. And so if returning to work is the goal, well, can you return part-time? Can you go back for a few hours? You can still get that rest, take that time to recuperate in between. If there's an option for that, you bet I'm going to encourage my patients to pursue that. And sometimes we need the opinion of other experts, maybe an occupational therapist, someone with cognitive retraining expertise who can do some additional tests that might be able to give us a little more information about how successful, or how likely is someone to be successful as they return to work. And so using those tools, drawing on that, where we can.

Dr. Correa:
How do you consider and get into a family planning discussion with individuals who've gone through this whole process? And are there considerations along the way in selecting treatment?

Dr. Gregory Day:
The first question is: Do you have the opportunity to have that family planning discussion? I think when people are thinking about returning really to normal function, returning to full scope of planning and next steps as a family, we've got to recognize that it's a stress. There's added stress at every level of that, particularly when a baby arrives or there's any new addition to the family structure. But with proper planning, with the support of the family, we can certainly help with that. And I think people are going to continue to succeed and thrive in that environment. I think the most specific concern from the neurology standpoint is: Are there medications that need to be balanced to really support that. As a doctor who treats patients with seizures yourself, you appreciate that in particular, people are still on medicines to decrease the chance of a seizure. Those medicines might need to be adjusted, or maybe we need to switch to a medicine with a lower risk of toxicity on developing babies in utero.
And so that's always an open option. And sometimes we are still using medications or think that we may need medications to decrease the chance of a relapse of autoimmune encephalitis. And we may need to select those medications carefully as well, picking ones again that we think have the lowest chance of affecting a pregnancy, and again, the highest chance or highest opportunity to keep the disease at bay. So it's very much a personal discussion, a personal decision. And when those surprises happen, we work around that as quickly as we can and as best as we can, making decisions that we hope are going to be right for mom and baby.

Dr. Correa:
That's so thoughtful. And Greg, thank you so much for taking time out with us today. We truly appreciate you spending time with us here on the podcast, helping us discuss autoimmune encephalitis. And I want to make sure I don't take too much more time away from you being able to get back to your patients.

Dr. Gregory Day:
And again, I really appreciate the discussion, and thanks for the opportunity to speak.

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Author, Speaker Jackie Stebbins on Rebuilding Her Life After Autoimmune Encephalitis

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