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What happens when your autoimmune encephalitis treatments aren’t working?

What happens when your autoimmune encephalitis treatments aren’t working?

April 13, 2022 | By WhereAreMyPillows.com

Message from the IAES Blog Staff: 

We are pleased to share with you that Where Are My Pillows has returned to her blogging game! The post below touches on the shared challenges of autoimmune encephalitis patients who relapse or whose inflammation remains refractory to first- or second-line treatments. Please join us in wishing her full success ahead as she embarks on the next chapter of her healing journey!

—–

This post is part of the recurring #WhereAreMyPillows blog column for the International Autoimmune Encephalitis Society and is adapted from a blog originally published on  www.wherearemypillows.com.

Introduction

Q: What happens when your autoimmune encephalitis treatments aren’t working?

A: You relinquish all unnecessary obligations, neglect your blog, and trade your human friends for Squishmallows who think no less of you for spending hours on end in bed.

wherearemypillows squishmallows 500x500 - What happens when your autoimmune encephalitis treatments aren't working?

Friends who don’t mind doubling as pillows—now those are real keepers.

Joking aside, it’s an exhausting and demoralizing road. While being diagnosed with autoimmune encephalitis (AE) in the first place is scary, failing treatments that normally give people their lives back is despairing. Recognition of the failure is slow. You’re told to hang tight and be patient for the immune system to adjust; but as months pass by without sustained improvements, the feeling that something is wrong begins to take hold.

The following runs through your head: Am I overreacting? Do I have permanent damage? Can this situation be salvaged? Will it be like this forever? Can I just give up and resign from this reality?

Embracing trial and error, and being fed up with the status quo

If you’re lucky, you have a doctor that realizes just how pernicious AE—brain inflammation—can be. More importantly, they realize they have multiple tools at their disposal to treat it and take responsibility for actually wielding them.

This can mean going beyond steroids, beyond IVIG, and sometimes even beyond rituximab (Rituxan). As far as I can tell, the doctors who create the best outcomes for their patients recognize that the amount of medications required is highly individual and that treatment responses are not always trackable via standard tests, especially for complex diseases like AE. And treating AE is ultimately a game of trial and error—part science, part art. The research can only run so deep for a rare disease that just started receiving attention in 2005.

Since I was diagnosed with AE in the summer of 2019, I’ve been put on methylprednisolone (Solu-Medrol), IVIG, Rituxan, plasmapheresis, and tocilizumab (Actemra) at varying doses, intervals, and timeframes. And just recently, I started mycophenolate mofetil (Cellcept) and received an infusion of cyclophosphamide (Cytoxan).

None of these are a surprising choice of therapies; they are all described in the medical literature as appropriate treatment options for autoimmune encephalitis. But what IS surprising to most people is that my doctors are actually:

  1. exercising all these options;
  2. overlapping some of them; and/or
  3. bothering to still treat me at all, given the protracted course of my illness (which began in 2014) and the fact I can still walk and talk.

It should not be surprising, but it is given the current paradigm of (arguably) conservative treatment that the average patient is offered. And sadly, a nontrivial subset of these surprised people are patients/caregivers that are still struggling, face seemingly impossible medical barriers, and rightfully suspect that there could be benefit from further treatment due to signs that their or their loved one’s inflammation is poorly controlled.

It’s heartbreaking to hear these stories and realize how easily I could be circling that drain.

That’s actually why I’m forcing myself to grind through the cognitive fog and write again. Some recent conversations have reminded me of how many people are needlessly struggling with obstacles on their AE journey, ones that can bypass others completely, all because of some stroke of dumb luck such as:

  1. The first doctor that saw the patient in the emergency room performed a spinal tap and believed the issue was neurologic rather than psychiatric.
  2. The patient lives in province/state “X” where a critical medication is on the formulary covered by the government/insurance plan—not province/state “Y” where a critical medication requires special authorization and is typically denied.
  3. The previously seronegative patient turned seropositive during a relapse, suddenly lending credibility to the diagnosis and making treatments more accessible.

wherearemypillows treatment chair 500x375 - What happens when your autoimmune encephalitis treatments aren't working?

While the field of autoimmune neurology is relatively new, it is not so new that one different roll of the dice should be able to dictate the outcome of a patient so profoundly.  It is unsettling how many more junctures my own AE journey could have been derailed at, the above bullet points being just a sampling.

There is clearly a need for greater physician awareness, better standards of care, and shifts to the present paradigm of treatment. And the more that patients/caregivers challenge the status quo, the sooner that change will come.

My goal in speaking out is to help level the playing field for those being caught in the AE quicksand. I’m far from the only person out there who deserves the opportunity to take another shot at permanent recovery. To those that have humbled me by sharing your stories or provided encouragement for me to keep plodding forward, thanks for galvanizing me into ending a four month writing hiatus.

Reexamining the mechanisms underlying autoimmunity

As mentioned above: I recently started Cellcept and Cytoxan in an effort to pull me out of my relapse that began in spring 2021. We had added Actemra to my regimen in July, hoping that would turn things around; but after 5 monthly infusions with transient improvements only and no compounding benefits, my primary neurologist agreed to pull me back into the hospital for plasmapheresis. It had worked beautifully for me in January 2021 and we were hopeful another 5 rounds over 10 days would work the same the second time around.

It turned out to be a bust. I’m glad I went through with it though; otherwise, I would always wonder whether plasmapheresis paired with stronger maintenance therapy would be a viable solution, rather than having to progress to chemotherapy. Again, it goes back to that whole “trial and error” concept. You evaluate the options based on your unique clinical scenario, make a strategic decision, compare the results with existing scientific knowledge, and synthesize all available data to inform your next steps. Along the way, you progressively refine your mental models.

But that’s not the approach you’ll find all doctors using. A few years back, my treatments were stalled by the terribly ignorant no detectable antibody = no autoimmune encephalitis explanation. Somewhere in the middle, it was the poorly reasoned it’s impossible to relapse on Rituxan you probably never had encephalitis but rather just have adult ADHD explanation. And now, several doctors later—and after scoring 2 standard deviations higher on an IQ test as a direct result of plasmapheresis, not psychostimulants used to treat an attention disorder—we’ve landed on an explanation that contains a couple more shreds of logic.

The doctor in charge of my current treatment plan is a neuro-oncologist who, in addition to cancer, treats a number of autoimmune conditions beyond just AE including myasthenia gravis and neuromyelitis optica. He explained to me in simplistic terms that when it comes to autoimmune neurological diseases, he looks at the individual and in broad strokes considers how much of the immune dysfunction is antibody-mediated/humoral vs. how much is cell-mediated. Response to treatment can provide clues.

IVIG, Rituxan, and plasmapheresis are known to be most effective for addressing antibody-mediated autoimmunity; since I’ve had diminishing returns from these treatments over the past few years, he suspects a significant proportion of my autoimmunity is now cell-mediated. This would also fit with the theory that I have GAD65 encephalitis, which is thought to involve a T-cell mediated immune response. While the call is debatable, both him and my other neurologist consider me a true GAD65 positive patient now rather than a seronegative one, as the antibody appeared in my serum and rose in titre on the 3 occasions we checked last year. Either way, my primary doc is confident that it’s time to move on to medications that target both B AND T cells—in my specific case, Cellcept and a Cytoxan.

Now, I am not a medical professional who can responsibly assess the validity of this framework; but this neuro-oncologist is well-respected amongst his peers, and the rationale for his decisions make a hell of a lot more sense to me than the ones provided to me by other doctors in the past.  While Rituxan initially got me back to baseline in 2019 and is a highly effective, permanent solution for many patients, it upsets me when doctors are adamant that Rituxan is a magic bullet for treating AE and that any ongoing symptoms absolutely cannot be due to uncontrolled brain inflammation. Or said a little differently: if your previous AE symptoms return but your CD19 test results are at 0, your AE is well-managed and we’ve finished our job. This hard-and-fast conclusion seems incredibly irresponsible and lazy to me, when even a cursory glance through the medical literature yields hundreds of articles discussing the utility of alternative treatment strategies across a number of AE scenarios.

wherearemypillows treatment 500x375 - What happens when your autoimmune encephalitis treatments aren't working?

Moving forward

The takeaway here is that if you are dealing with ongoing levels of significant dysfunction, experienced a period of relative normalcy followed by a return of disabling symptoms, or your specialist has limited experience with treating AE, there may be further runway to explore.

I say that with a note of caution, being careful to acknowledge not everyone is going to benefit from seeking further treatment and some are already working with wonderful doctors who are truly doing everything they feasibly can. But judging from going through 12 neurologists myself and hearing the experiences of hundreds of patients/caregivers, chances are your doctors may not have painted the full picture of the options out there. There is more to the immune system and the mechanisms underlying autoimmunity than what the average neurologist appreciates.

If you want to explore other options or doctors, take some time to educate yourself first. Otherwise, it’s going to be hard to effectively advocate for yourself or your loved one. Without slogging through research publications, listening to the experts in the field, and/or joining support groups (like the International Autoimmune Encephalitis Society Facebook group to hear from others living with this illness, you tend to reach a ceiling on how far you can get. Alternatively, you might gain reassuring perspectives that help you realize your team of doctors is already handling everything appropriately.

As for me, I’ll be doing my best to keep advocating for AE awareness and better outcomes while I recover in the months ahead. You can also expect to see me popping up more regularly in online support groups and social media—see you over there! 😉

For more insight into what living with autoimmune encephalitis looks like, read more at my blog below or find me on InstagramFacebook, or Twitter.

wherearemypillows bio

WhereAreMyPillows is an autoimmune encephalitis survivor from Canada. Her favourite activities include writing on her health blog, taking photos, doing yoga, and finding her next spot to take a nap. 

Join her on the IAES Facebook group, and on her WhereAreMyPillows Facebook PageInstagram and Twitter #wherearemypillows

 

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

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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. 

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For those 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.  

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

 

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Learning to Bloom Where You’re Planted | Conclusion to the WhereAreMyPillows Resilience Report Series

Learning to Bloom Where You’re Planted | Conclusion to the WhereAreMyPillows Resilience Report Series

July 14, 2021 | By WhereAreMyPillows.com  

 Message from the IAES blog staff:

We at the IAES are pleased to be growing a resilient network of AE Warriors! It’s been a real pleasure to celebrate the critical milestones in recovery and care with so many of you as part of our AE Tuesday Tries initiative, hosted by Tessa McKenzie (our Chief Resilience officer).

To tie in with this, we thought it fitting to highlight the Resilience Report series that blogger WhereAreMyPillows created over the past 12 months of her multi-year journey with AE. Published consistently on her blog at the end of each month, she has provided us all with a snapshot into the realities of fighting for AE care and what it’s like to just keep putting one foot in front of the other on the road to recovery.

Through diagnosis, treatment, setbacks, growth, and recovery, we at the IAES are committed to helping you strengthen your own resilient spirit, just like we have witnessed develop through WhereAreMyPillows’ writing. Join us for weekly discussion in our Facebook group and sign up for our monthly Zoom meet-up, with our next one to be held on July 27, 2021.

This post is part of the #WhereAreMyPillows monthly blog column for the International Autoimmune Encephalitis Society and is adapted from a blog originally published on  www.wherearemypillows.com .

—–

flowers blooming wherearemypillows 300x225 - Learning to Bloom Where You’re Planted | Conclusion to the WhereAreMyPillows Resilience Report Series

Two years ago last month, I was hospitalized for the first time. I was diagnosed with seronegative autoimmune encephalitis (AE). And I started 5 months of immunotherapy, roughly 5 years after my illness first began.

By November 2019, I thought the war was won: I seemingly had all the answers to solve my medical mystery, which had been open since 2014. It was clear by that month that standard AE treatments had worked wonders to bring me back to my original baseline of good health and cognitive functioning. Sure, I knew relapsing was a possibility; but were that to happen, I figured that healing again would be as simple as resuming Rituxan.

And then 2020 happened. 2020 taught me that there is a whole lot more to encephalitis, the medical system, and to put it plainly—human suffering—than I appreciated the first time I recovered.

But it (along with 2021) has also taught me that I’m capable of much more than I know. I started this Resilience Report series exactly one year ago—2.5 months after resuming Rituxan—thinking that an upward ascent was nigh. That I’d be declaring myself healed in no time. As it would turn out—NOPE! Turns out, I’d continue to deteriorate, accrue more medical trauma, and require another hospitalization to start recorrecting the bleak course of my disease!

As devastating as that was, what unfolded was actually a lot more meaningful than what I had originally hoped for. I was stretched to new limits, widening my horizons and deepening my understanding of what it means to be human. I found out what I’m made of, by being broken down into my component parts. And while it remains uncertain how the parts are going to be reconfigured, I see many exciting potentialities ahead. I mean, I’m not well enough right now to be jumping up and down about it just yet; but I feel a sense of conviction that whatever the future holds, it’s going to be okay. Underneath the surface struggles, I see a continuously evolving reserve of inner resources that will buoy me through whatever comes my way.

And with that, I’ve decided to conclude this Resilience Report series. I think they’ve served their purpose, providing an unvarnished and unglamourous glimpse into what it’s been like for me to persevere through the past year of living with AE. Lots of battles and lots of bumps, but with some key victories that encourage me to keep exploring the future with curiousity rather than trepidation. Most of the time, at least!

My biggest takeaway, after writing 12 of these, is knowing that there’s a reason I’ve survived the past 7 years. I feel that in my gut. I’m determined to make it, to live a compelling story, to help others along the way, and to reach a far more satisfying end to this journey. That’s what resilience means to me.

What’s ahead? Well for starters, I’ve got a PET scan on the books to capture the cognitive decline I’ve been experiencing again over the past weeks. Hopefully that will open up more treatment options, to push me out of this relapse and back on to the healing road I was on when I left the hospital in January. And I still plan to keep writing on my blog, with the goal of once monthly at minimum.

I leave you with a relevant highlight of the past month: seeing the AE Alliance newsletter published, with my story starting on page 12. It was a real honour for me to be asked to write a piece for the Alliance’s recurring “My AE Journey” newsletter segment, as besides the IAES, the Alliance is another important organization that is moving mountains in the AE world and directly impacting patients just like me. Check it out here.

ae alliance newsletter feature wherearemypillows 500x249 - Learning to Bloom Where You’re Planted | Conclusion to the WhereAreMyPillows Resilience Report Series

And… that’s a wrap! Thank you to everyone who joined along with me for this series, and for those who’ve dropped a line—you’ve done wonders to aid me in remaining resilient through this journey, and I would not have gotten as far without you 😊

This post concludes my Monthly Resilience Report series, in which I document the ebbs and flows of recovering from autoimmune encephalitis. Previous ones can be found below:

For more insight into what living with autoimmune encephalitis looks like, read more at my blog below or find me on InstagramFacebook, or Twitter.

wherearemypillows bio

WhereAreMyPillows is a seronegative AE survivor from Canada. Her favourite activities include writing on her health blog, taking photos, doing yoga, and finding her next spot to take a nap. 

Join her on the IAES Facebook group, and on her WhereAreMyPillows Facebook PageInstagram and Twitter #wherearemypillows

 

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

guidestar platinum logo 300x300 1 e1605914935941 - Learning to Bloom Where You’re Planted | Conclusion to the WhereAreMyPillows Resilience Report Series

 

 

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 - Learning to Bloom Where You’re Planted | Conclusion to the WhereAreMyPillows Resilience Report Series

For those 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 - Learning to Bloom Where You’re Planted | Conclusion to the WhereAreMyPillows Resilience Report Series 

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

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

 

This is what it took to lift me out of an autoimmune encephalitis relapse

This is what it took to lift me out of an autoimmune encephalitis relapse

May 12, 2021 | By WhereAreMyPillows.com  

 Message from the IAES blog staff:

We’re pleased to share this long-awaited update from an IAES community member, whose story we first brought to you last year! This post is part of the #WhereAreMyPillows blog column for the International Autoimmune Encephalitis Society and has been republished from www.wherearemypillows.com.

—–

 

Lemme tell ya: this ain’t for the fun of it.

The plane lifts. Like many traveling for the first time since the pandemic began, anxious feelings churn beneath my calm exterior.

Is it safe to fly? Will I regret this later?

At the very least, the destination promises to deliver on novelty, excitement, and energy—qualities that had been missing from much of the past year. As we reach cruising altitude, my nerves are gradually dampened by daydreams of stepping inside iconic landmarks, taking in a show, and sating my photographer heart with vistas of an expansive skyline. Soon, my imagination is running wild with all the things to experience as a first-time visitor to the City That Never Sleeps.

Turbulence. The plane shutters, jolting me back to reality.

Right. This isn’t a vacation; this is a do-or-die effort to receive critical medical care.

#HospitalLife

The next thing I know, I’m being jabbed in the lower back with needles. I’m feeling electrodes placed across my skull. I’m having a catheter placed in my jugular vein. I’m seeing my plasma collect in a bag.

And suddenly, the answer is clear: the risk paid off.

I’m left with medical trauma to disentangle, a giant headache of ongoing maintenance treatment to coordinate, local doctors to answer to, and thousands of dollars of medical bills to pay; but it bears repeating: THE! RISK!! PAID!!! OFF!!!!

It was distressing, it was lonely, and it was painful; yet I’d do it all again in a heartbeat. There’s nothing like having your cognitive faculties restored after suffering months in a dementia-like state.

plasmapheresis 1 500x375 - This is what it took to lift me out of an autoimmune encephalitis relapse

AUTOANTIBODIES BE GONEEEEEE!!!

Wait… what?

If you’re thinking “what the heck did I just read,” good—then I’ve managed to capture a sliver of the “what the heck did I just live?” feeling that I have yet to shake since walking out of the hospital in January.  I’ve just retold the story with a veneer of fiction; but in fact, this is real life with an autoimmune encephalitis (AE) diagnosis.

More specifically, when you’re claiming to be in a relapse (and seronegative to boot), your prospects are grim. You’re trapped in a grey no man’s land where few doctors are willing to provide rescue. Through 2020, from 5 different neurologists, I heard everything from “I can sympathize but have nothing else to offer you,” to “you’re just dealing with sequelae,” to “this might all just be adult ADHD.” This, after being diagnosed and fully recovering in 2019—back when I was hospitalized 3 times and went through more than enough, but still had little idea of how much more complex the nightmare could get.

In this floundering state, the onslaught of failed doctor’s appointments threatens to turn your self-assured core upside down. Clearly you’re capable of holding a conversation; there’s nothing wrong with your brain, right? The semblance of basic medical knowledge and verbal coherence draws suspicion; are you just looking for attention? A convenient way to justify a malingering state during a difficult pandemic year? As the slammed doors of doctor’s offices pile up, the doubt creeps in.

Whose voice do you listen to, when you’re increasingly aware that your own is marred with symptoms of cognitive decline?

As the year drew to a close, I was hit by a ton of bricks. Then, finally, my mind registered: this situation is so simple, it’s ridiculous. I’m a shadow of my former self, and I need aggressive medical attention STAT.

And as it turns out, my instincts were right. It took getting the attention of a top expert in the field, traveling thousands of miles, and enduring a challenging hospital stay during a pandemic; but I not only proved I was in a genuine relapse, I experienced remarkable recovery as well.

Getting down to the nitty-gritty…

What happens when your doctor orders 5 cycles of plasmapheresis, 5 infusions of Solu-Medrol (methylprednisolone/high dose steroids), and 1 infusion of Actemra (tocilizumab)?

In my case: a brand-new person.

In total, I spent 13 days in the hospital and endured a barrage of daily discomforts I’ll spare you from having to read here. The important part is that the treatments worked wonders. Halfway through the stay, on the morning of my third plasmapheresis cycle, I felt as if a light switch was flipped in my head.

Suddenly, I was alive.

Once-dormant neurons began rumbling awake, with electricity freshly flowing through brain regions that had spent the past 10 months offline. The normally reticent resident perceived the transformation too, remarking “there’s something very different about your energy,” during his early morning rounds.  Words like that feed the soul when you’re used to a default of medical dismissal.

The remainder of the stay was a breeze. Relatively speaking, at least—never mind the ongoing challenge to find good veins, power struggles with a certain nurse, and mild autonomic issues. Each day was better than the last, with the capacity for higher level cognitive processes returning, more of my personality coming back, and improved emotional regulation (I hadn’t even realized how haywire my emotions had become until the autoantibodies were removed from my system). Solu-Medrol helped fortify the early gains from the plasmapheresis, and Actemra was provided to prevent any rogue autoantibodies from returning.

I cannot overstate the night and day difference between pre- and post-hospital me. When you go from ruminating about a potential future in a dementia care home, to experiencing the brain of a healthy young adult again, it’s pure elation. No hyperbole—I made a miraculous turnaround starting with the plasmapheresis treatments, and I’m incredibly thankful for the doctor that recognized my need for this treatment.

As for the individual roles of Solu-Medrol and Actemra in contributing to recovery, I’m less certain; but given my level of cognitive dysfunction, protracted AE history (originating in 2014), and unsatisfactory response on rituximab alone through 2020, my doctor felt they were necessary additions.

Please note that I’m not providing medical advice or implying that this treatment is appropriate for all AE patients; furthermore, results from plasmapheresis vary from quick and dramatic like me, to imperceptible for others.

plasmapheresis 2 500x375 - This is what it took to lift me out of an autoimmune encephalitis relapse

This post brought to you by…. *drumroll* …. this machine! I would have a fraction of my present functionality were it not for the wonders of this technology.

In Perspective

I fully recognize my case of AE is grey. I have a relatively isolated, dementia-like presentation that is not detectable on an MRI or via standard CSF markers, but does involve vague EEG abnormalities and mixed hypo/hypermetabolism on a FDG-PET scan.

I understand why most neurologists struggle with this. They don’t want to risk hurting you with medications or procedures that come with potential side effects, and they’re used to treating patients with a more black-and-white picture.

But what I DON’T understand is the rampant gaslighting experienced by patients left, right, and centre within the AE community—not just by me. I went from capably managing 40-60 hour work weeks in early 2020, to having to bow out of work altogether. You can’t just peg that on residual symptoms leftover after my initial treatment in 2019.  And some of the alternate narratives suggested to me, while convenient if true, were incredibly sloppy (ADHD—really?!) and left me with psychological battle scars I’d rather not have. For all the specialists I’ve seen, I actually have a relatively straightforward medical history; I can only begin to imagine the frustration felt by patients whose doctors remain fully adamant their symptoms are due to a comorbidity, and NOT autoimmune encephalitis.

It should not take 12 neurologists over 6+ years –with 4 weighing in with erroneous judgments while I was relapsing, even after the diagnosis had already been established the year earlier—to fix 1 AE patient.  It’s really not that complicated. Yet our present medical system makes it so, stranding scores of AE patients who are left to needlessly suffer. My situation of misdiagnosis and mistreatment is not that unique, and that’s what troubles me most.

As for today: I’m not at baseline, I still have some unsteady days, and I still don’t have all of the maintenance medications I’ve been prescribed. Frankly, the follow-up care outside of the hospital has been a bit lacklustre; in the end, the panacea for AE care remains elusive. In a situation like mine, it’s still on the patient or caregiver to hound doctors’ offices, facilitate insurance appeals, coordinate communication between doctors, and take command of figuring out logistics for ongoing care. I’m run down. But I’m also keenly aware that I’ve already experienced a level of treatment and healing that many patients aren’t so fortunate to experience, and for that I remain incredibly grateful.  Fingers crossed the treatments hold, and that the healing continues.

The major takeaway here? If you know in your gut that something is medically wrong, keep advocating for yourself (or your loved one). Dig deep inside yourself to keep going, until you find the answers that sit right with you. This may not always look like more treatment; there may not be anything further that can be done. However, many times there is—it just takes some serious persistence. That’s the ugly reality of AE today (one I hope to help change for the future). You might need to spend hours gold-panning for the right nugget of information and stomach some gut-punches from the medical community, but it can absolutely make a world of difference towards restoring your quality of life.

Believe me, I had my days I wanted to give in. But once the wallowing subsided, I kept turning back to my community. There are many out there, more resilient than me, who inspired me to inch forward whenever the going was rough.  Get resourceful, and don’t be shy about reaching out to others—these were pivotal components to unravelling my own personal AE puzzle. You can find a list of AE-specific support groups here.

I hope this post benefits someone out there in the same way I’ve been fortunate to benefit from patients and caregivers on this journey alongside me. To those who have helped me weather the AE storm, thank you from the bottom of my heart ❤️️.

For more insight into what living with autoimmune encephalitis looks like, read more at my blog below or find me on InstagramFacebook, or Twitter.

 

wherearemypillows bio

WhereAreMyPillows is a seronegative AE survivor from Canada. Her favourite activities include writing on her health blog, taking photos, doing yoga, and finding her next spot to take a nap. 

Join her on the IAES Facebook group, and on her WhereAreMyPillows Facebook PageInstagram and Twitter #wherearemypillows

 

 

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

guidestar platinum logo 300x300 1 e1605914935941 - This is what it took to lift me out of an autoimmune encephalitis relapse

 

 

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. 

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For those 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.  

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The Real-World Challenges of Surviving an Autoimmune Encephalitis Diagnosis

The Real-World Challenges of Surviving an Autoimmune Encephalitis Diagnosis

December 19, 2020 | By WhereAreMyPillows.com  

 

This post is part of the #WhereAreMyPillows monthly blog column for the International Autoimmune Encephalitis Society and has been republished from www.wherearemypillows.com

 

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Please note that the following is based on my (WhereAreMyPillows) own personal experiences as a patient living with autoimmune encephalitis. Everyone’s journey is different; some may disagree with the views presented.

The world that doctors live in…

The classic story arc of autoimmune encephalitis goes something like this: a patient presents to the hospital emergency room with an abrupt onset of psychotic features that include hallucinations, paranoia, anxiety, and strange behavioural changes.

They’re evaluated by the psychiatry service, medicated with psychotropic medication, and monitored to ensure they don’t become a danger to themself or others.

But the patient’s symptoms persist; then, seizure-like activity is witnessed by someone on their medical team. Physical weakness, loss of balance, autonomic dysfunction, and other physical abnormalities quickly follow.

The neurology service is called in. An EEG, lumbar puncture, comprehensive blood panel, and an MRI are ordered and come back with several abnormalities.

The diagnosis? Presumptive autoimmune encephalitis (AE), made definitive a couple weeks later when serum and spinal fluid results are reported positive for antibodies against the NMDA receptor (or another recently discovered autoantibody).

Steroids and IVIG are promptly administered, further deterioration is halted, and the patient begins to make a turnaround. Within weeks, family members start to recognize their loved one again. The patient has some months of rehab work ahead of them, but the disease has been arrested—modern medicine has done its job!

At the 6-month post-discharge follow-up, healing is judged to be progressing smoothly; 1 year later, the AE patient has recovered and made a full (or nearly full) return to their pre-illness activities. No further complications. Case closed.

….Versus the world that patients live in.

Oh what a neat, tidy, and ultimately naïve narrative.

It’s the idealized version of the patient journey—the one that, in fact, most (but not all!) AE survivors fall short of.  Myself being one of them.

More saliently, it’s the story that poorly-informed physicians—often neurologists—tend to stick to. No ifs, ands, or buts.  In their eyes, anything that colours outside of these lines can’t be related to autoimmune encephalitis.

…..Okay, that’s probably an unfair characterization and overgeneralization. Forgive me for being salty right now; not all doctors are narrow-minded. I’m just exasperated after speaking with 5 neurologists too many in the past month, continuing to have ongoing medical chores, running on fumes, and feeling mostly like crap for the past 8 months. It’s both heart-warming and soul-crushing to think back to around this time last year, November 2019, the first time I felt like I had finally gotten my neuropsychiatric symptoms into remission after a 5 year journey of misdiagnosis (which culminated in being hospitalized).

One whole year after recovering from Rituximab and IVIG, I didn’t think I’d be back here. In some ways, 2020 has been like the sped-up version of my 2010s: a time that began with unbridled dreams, aspirations, and excitement (excellent health as I began adulthood); a sudden lurch that threw everything up in the air (medical challenges and uncertainty); and a bumpy landing where all sense of progress ground to a standstill (poor health). In 2020, I started a new chapter of life in a new country (USA); I relapsed; and the subsequent months have gone sideways. The 2010s DID conclude with some medical miracles and a remarkable recovery—if I look through an optimistic lens, I can see how things may be shaping up for a similar outcome again.

But right now I’m just bitter.

This time last year, I knew relapsing was a possibility; however, I was comforted by the belief that I had a concrete diagnosis after spending 5 years without one. I thought I was done with falling through the medical cracks. As far as I knew, autoimmune encephalitis is a very treatable condition, we know what medications work for me, and the field continues to rapidly progress. And I managed to get my full health back, after progressive worsening that started in 2014.

So maybe you can imagine my anguish from realizing I’m in the midst of reliving parts of that 5 year nightmare once again. Instead of accessible medical care and treatment after my relapse, I’ve been met with medical gaslighting and new barriers—made all the more heavy by avoidable medical trauma of my past.

Here’s a representative story that amalgamates parts of my own healthcare experience together with common experiences I hear from other AE survivors in patient support groups:

What happens when you relapse

1. Some doctors dismiss the possibility that you are relapsing.

One day, you face the fact that some vague symptoms have crept up on you the past couple weeks. Maybe your balance seems a bit off. Maybe you’re slurring your words a bit. Maybe your emotions are uncharacteristically erratic. Maybe you’re having bizarre memory lapses and spells of paranoia.

So you go back to your doctor, only to be given a flippant reminder that AE often leaves long-term sequelae and permanent deficits you have to learn to live with. There’s nothing more to be done. The inflammation can’t be there anymore. Go home and get on with your life.

But lo and behold: a couple weeks later, your health deterioration is undeniable. You’re forced to take a leave from work, and find yourself readmitted to the hospital after having a seizure.

Evidently, overcoming a return of AE symptoms is not simply a matter of pulling up your bootstraps and willing your way back to good health.  The immune system can be a temperamental beast; having it knocked out of balance once can certainly make it more susceptible to being knocked out of balance again. While not all symptom exacerbations point to a true relapse caused by immune dysregulation, there’s certainly reason why patients should remain closely monitored.

Research is limited, but a publication from Dalmau and Graus (2018) estimates that AE relapses occur at a rate of 12-35%. You learn later (just a little late) that some doctors know to be vigilant and closely monitor for returning symptoms, while others adhere to the misguided dogma that AE is rarely more than a monophasic illness.

2. There are no widely accepted protocols for what to do during a relapse.

Autoimmune encephalitis entered into the neurological mainstream in 2007, when Josep Dalmau at the University of Pennsylvania published his discovery of anti-NMDA receptor encephalitis. That makes the field of autoimmune encephalitides relatively young.

While AE experts have roughly come to agree on the medications and protocols for patients early in their disease course (particularly anti-NMDA receptor patients), there’s little out there to guide physicians dealing with patients who recover slowly, have ongoing symptoms, develop new symptoms, or end up in a full-blown relapse.

So when you consider how common initial treatment delays are due to under-recognition of the disease and lack of worldwide AE expertise, it’s not hard to imagine the reluctance and challenges faced by the average physician when confronted by a patient in the midst of a relapse.

3. Your response to medications may not remain consistent over time.

A logical place to begin re-treatment might be to use the medications that helped you recover the first time AE entered your life.

Thus begins the lovely road of IV medications all over again.  It’s a painful crawl down memory lane, but it’s a relief to know that at least your medical concerns are now being taken seriously. Further deterioration seems to have halted, and everyone’s hopeful that you’re back on the mend.

Fast forward a few months however, and it’s clear that your relapse recovery is swerving left in a new direction. This isn’t the familiar road you were expecting.

Later, you learn it’s not uncommon for medications to lose their effectiveness as time goes on. Sometimes, different methods of targeting the immune system are warranted.

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Back in the thick of the medical journey.

What happens when you talk to other AE patients

4. You realize that the presentation, diagnosis, and treatment protocols for AE are more heterogeneous than you were led to believe.

When you realize your recovery isn’t going as planned, you reach out to patient support communities to find out how others are coping after their AE diagnosis.

It’s a boon to find real human beings who lend colour to the lonely experience that is autoimmune encephalitis. It’s also shocking at times: you learn far more from fellow patients than you do from your own doctors. You’re far from the only one without a textbook case of AE.

There can be a range of severity levels, some are misdiagnosed for years before receiving immunotherapy, people have variable responses to the conventional treatment protocols, and relapses ain’t so rare afterall.

It becomes clear that the current state of AE medical literature is not wholly representative of what this disease looks like for the patients living with the condition.

5. You observe large differences in the style of treatment offered to patients.

What dose of insert-name-of-medication-here should be administered? At what point do you escalate to second and third-line treatments? Are there instances where therapies should be combined? How long should a patient be kept on immunosuppressants? When and how do doctors make the judgment call that indeed, this patient is in a true AE relapse?

You see people from across the globe chime in to various online forums with their experiences. Turns out people are placed on medication regimens and provided with recovery guidance as variable as the manifestations of the disease itself.  Sure there’s many points of commonality, the basics of which appear in the medical journals; but it’s also unnerving to realize that the standard of care can differ from physician to physician, let alone state to state and country to country. This has drastic implications on a patient’s ongoing quality of life.

Some people are automatically provided with rehabilitation support in the form of occupational or physical therapists. Some are directed to get a neuropsychological examination. And some others might be left to their own devices after their discharge from the hospital, clueless that perhaps they could benefit tremendously from a speech language pathologist that provides cognitive therapy (i.e. me, up until a few months ago).

Most strikingly, you learn of several major U.S centres that have adopted the convention to keep patients on at least 2 years of immunotherapy after the acute phase of their illness. You notice a minority are even told by their docs that they’ll be on some form of an immunosuppressant for life.

Well, perhaps THAT partly explains why I relapsed, you think with some bitterness. Your original care team cut you loose from all meds and deemed you fully recovered, after only half a year of immunotherapy.

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Another glum doctor’s office.

What happens when you get a second opinion

6. Seronegative patients battle the ongoing question of whether they really even had autoimmune encephalitis in the first place.

After you’ve spent a couple months at a plateau—and far from your healthy baseline—you seek out a second opinion.

But you end up worse off than where you began prior to the appointment. Rather than offering insight into how they treat AE patients and suggestions for how to adjust your current regimen, this doctor spends an inordinate amount of time hung up on the fact that you do not have an identified autoantibody, despite other abnormal biomarkers consistent with AE. Even though antibody negative AE is a legitimate diagnostic entity. Even though new antibodies are continually being discovered.

They’re skeptical about the recovery you describe the first time you were given immunotherapy a couple years ago, using your inadequate response to recent treatment and ongoing symptoms as ammunition for their assertion that you have a primary psychiatric disorder instead. Even though there are more and more case reports of antibody positive encephalitis patients who fail first and second line immunotherapies.

You realize you’ve just been medically gaslit. Join the crowded club.

7. The search for proper medical recognition and treatment can become just as exhausting as managing the symptoms of AE itself.

You pingpong back and forth between your longtime family doctor, psychiatrist, and neurologist. They’re sympathetic to your situation, but ultimately reluctant to be the one to step up and alter your current medical treatment. They’ve had little to no experience treating a patient like you. Maybe your body is just taking longer to respond this time, one of them tries to reassure you. Another shares your concern that you’re backsliding, and encourages you to continue to seek out further AE expertise and guidance.

So you spend more time in patient groups, gathering names of doctors that others suggest. You take a deeper dive into the medical literature. You read stories from other patients in similar situations as you, sharing your darkened reality of falling through the medical cracks. You follow up on every promising lead, and spend countless hours reaching out to medical institutions that are miles and miles away.

You search. And search. And search.

Your efforts sporadically yield a new piece to the puzzle, with key information and answers feeling so close yet so damn far away.

8. It may take a few “second” opinions, but your persistence finally pays off.

After dead-ends ranging from offices that never return your messages, to doctors transitioning out of clinical practice to focus on research, to doctors with new patient appointments booking too far away in the future, you manage to line up some appointments with a few of the top experts in the autoimmune encephalitis field.  There’s no shame in doctor shopping by this point; you can’t waste any more time putting all your eggs in one basket.

One doctor stands out, offering an astute assessment of your present situation and outlining a clear plan for future treatment. Why can’t all neurologists be as straightforward, compassionate, and solutions-focused as her?!

There’s no guarantees that the new protocol will work, but at least your sense of hope is renewed once again.

20201128 sunrise snowy rooftops 500x375 - The Real-World Challenges of Surviving an Autoimmune Encephalitis Diagnosis

So… now what?

Turning the narrative back to me: I started writing this post on a day I was frustrated, having spent large portions of the past weeks scraping by in survival mode.  It’s been a grueling time, with doors thudding shut and leaving echoes of the question “why do I even bother?”

I thought I simply needed to rant—which I ended up doing, to an extent. Part of me just wanted to curse away and throw a pity party, nevermind whether I should bother to post something like this at all. Let’s just say that these topics can get touchy and lead to arguments that cross lines into toxic territory.

But then I thought about the types of people who reach out to me. Oftentimes they’re stuck in a similar maze, feeling unsupported by their current medical team—or worse, by friends, family, and even other AE community members. I’m not a medical professional, but at least I can share personal insights based on my patient experiences.

And then I realized I’m tired of these pain points being swept under the rug. They’re shared by a significant number of AE patients, whose quality of life is worse off than it needs to be because a multitude of barriers exist between them and the medical attention they deserve. Throw in self-doubt, a lack of support, and discouraging remarks from those they’ve placed their trust in, and it’s easy to get lost in that “why bother?” mindset.

To those that are fighting similar battles right now, please carry on. Push forward and don’t lose sight of the light at the end of the tunnel, no matter how much it seems to be diminishing. It’s still there, waiting to brighten once you make it around the right corner.

I’m not sure exactly what’s ahead in my health saga, but I’m pleased to say that some new puzzle pieces finally came together this month.  Another doc, another approach, and better medical support have entered the picture.  And right now I think that’s enough to celebrate: getting to this point has been a hard-fought win.

For more insight into what autoimmune encephalitis recovery looks like, read more at my blog below or find me on InstagramFacebook, or Twitter.

 

wherearemypillows bio

WhereAreMyPillows is a seronegative AE survivor from Canada. Her favourite activities include writing on her health blog, taking photos, doing yoga, and finding her next spot to take a nap. 

Join her on the IAES Facebook group, and on her WhereAreMyPillows Facebook PageInstagram and Twitter #wherearemypillows

 

 

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

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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. 

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For those 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.  

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From on the Fritz to on the Mend: The Invisible Realities of Brain Injury Recovery

From on the Fritz to on the Mend: The Invisible Realities of Brain Injury Recovery

October 14, 2020 | By WhereAreMyPillows.com 

This post is part of the #WhereAreMyPillows monthly blog column for the International Autoimmune Encephalitis Society and has been republished from www.wherearemypillows.com

It’s a lovely day in the neighbourhood. The sun is blooming, birds are shining, flowers are sing—wait; that’s not quite how it goes.

Then it hits you: oh yeah, your brain is injured.

These days, my mind runs loops that straddle the line between normal thought and garbled logic. Innocuous at first glance, maybe; but troublesome when the loops wind threads of tangled reality into a web too bulky to slash through. At the heaviest of times, the circuit breakers trip and the fuses blow.

My mind becomes toast. Good luck reviving it.

Deep breaths, a protracted pause, and patience until the system comes back online. Then, the cycle begins again.

Such is the daily struggle of recovering from brain injury. In my case, mine was acquired in the form of autoimmune encephalitis: brain inflammation caused by my immune system attacking healthy cells in the brain. Plenty of other things—such as a stroke, seizure, tumour, oxygen deprivation and head trauma—can lead to similar cognitive spirals. While immediate medical care may halt the progression of further damage, patients are often left with a lonely and challenging aftermath to contend with.

Recovery is invisible, slow, unmapped, and uneven.

When your brain goes on the fritz

After 5 years of cognitive decline, my level of confusion and disorientation progressed to the point of hospitalization in 2019. The emergency room admitted me for having “an altered state of consciousness.” A lumbar puncture, EEG, MRI, PET scan, and numerous needle pokes later, I was diagnosed with seronegative autoimmune encephalitis.

In many respects, this side of the patient journey is actually the easy part. When you’re hospitalized with your brain on the fritz, you often lack the wherewithal to realize the extent of your cognitive issues.

Sometimes you’re left in a coma. Sometimes you’re conscious, but not actually present in the manner someone awake should be. Sometimes your memory is gone, only to be pieced together later with stories told by the people who witnessed your delicate state.

For me, the severe stages of my brain impairment shielded me from much of the suffering I would have experienced otherwise.

The beginning stages of the caregiver journey? Different story. I am incredibly thankful for my mom, who sat by my side nearly every day, functioned as my mouthpiece when I couldn’t advocate for myself, and endured the emotional anguish of seeing her daughter’s mind slip away. She’s the one who bore the brunt of my time in hospital, left on a rollercoaster of uncertainty and fear as doctors did their best to ultimately diagnose and treat me.

In any case, you’re typically afforded a level of respect and understanding from people that dissipates as time wears on. First mention of the words “hospitalization” and “brain injury” elicits the tacit knowledge that something severe has occurred, patience is warranted, and sensitivity is appreciated.

When your brain is on the mend

You’re discharged from medical care. The moment you step outside the facility, you feel like running a victory lap! But your body has other plans.

In fact, you go home, shower, and crash into bed for the rest of the day. It turns out you’re far more fatigued than you realize, and spend the next few weeks (or months) unable to gas your energy tank up to full.

I never knew how out of sync my emotions, body, and cognition could become until I dealt with brain injury. I came to learn firsthand how the wellbeing of one can exist independent of the others, leaving you with the scaled back capacity to function in the ways you could before.

It can feel like a scheduling problem, not so different from trying to coordinate a coffee date between 3 friends. Sometimes your schedules line up, and things move forward smoothly; sometimes your schedules are off, and you’re left waiting for a future that can’t come soon enough. Sometimes you go ahead with just 2 of you; sometimes schedules change unexpectedly, and you forge ahead alone.

In the early stages of recovery, my emotions, body, and cognition would hardly cooperate. I would feel like writing a message to a friend, but the words just wouldn’t come. Or my brain would let me complete some work, but before long I would need a nap. Or I would have the energy to cook, all the while judging myself for how clumsy and uncoordinated my post-injury actions had become.

“Be kind to yourself” makes sense intellectually, but that’s easier said than done. You’re thrust into a foreign reality, with a new brain that takes time to reacquaint itself with your body and emotions. And you’re likely underprepared for this adjustment. Many brain injury survivors are left without proper rehabilitation services or counselling support once they leave the hospital. It can feel like you’re left, forgotten, all alone.

At first, friends, family, and coworkers are generally kind and empathetic in the wake of your injury. But recovery takes longer than most people think. You start to realize that life goes forward for others at a pace you can’t compete with.

You soon develop a sense of alienation and isolation to work through, on top of your compromised cognitive state.

brain, neuron, model

The lingering issues that persist months later

Before I get much further, I should clarify: brain injury can look different from person to person. Some people experience a full recovery in a short period of time, while others are left with permanent deficits years later.

I have an unusual case of autoimmune encephalitis that has involved multiple remissions and relapses over 6 years. Right now I’m recovering from a relapse, which has reminded me all too viscerally how devastating it is to lose your cognitive function. This post is my attempt to make sense of this time period, as well as capture the commonalities I’ve noticed between myself and other brain injury survivors. Here are some of the lingering issues that exist for those of us in recovery:

1. Your brain takes time to work itself out of the twilight zone.

It’s hard to truly conceptualize what it’s like to lose brain capacity, unless it’s happened to you. Brain fog is one thing; brain injury is another. With the latter, it feels like critical connections inside your hardware have gone missing.

Recovery is a slow process to put your hardware back together, or to learn how to compensate without it.  Daily tasks require an immense amount of focus, concentration, and time to accomplish—if they’re within your reach at all. For example, the coordination required to drive and process information from road signs, changing traffic signals, and the movement of vehicles around you may take awhile to become comfortable with again. Or processes you could formerly run on autopilot—like brushing your teeth, making coffee, or getting groceries—may require a new level of concerted effort and mental energy.

Some days, the psychiatric involvement is strong. I think the following may be what some would call derealization or depersonalization. More than just a fried brain, it seems like there’s a layer of reality I’ve lost the ability to tap into.

My brain feels like a foreign place I have to reorient myself within from moment to moment. Various facets of my cognition are disjointed, such as my memory, concept of time, coordination between inner thoughts and speech production, executive functioning, and processing speed. I hold the premise internally that my body is on the mend; but that statement doesn’t jive too well with the lived experience, boots on the ground. I lose the sense for what’s actually happening inside my brain, as if somehow the existence of “me” is scattered elsewhere along a different dimension.

For now, I take comfort in knowing that these alarming neuropsychiatric elements are expected—that it’s going to be some time before I notice the ways in which my brain is recovering. But it’s hard to overstate how months of living with cognitive deficits and misperceptions of reality evokes a type of hardship that permeates into all aspects of your life. As much as I try not to dwell on these challenges, it’s sometimes overwhelming to deal with the emotional pain of losing my mind and attempting to regain it again.

2. Recovery isn’t linear, and the uncertainty is destabilizing.

I can never quite predict my level of functioning from day to day. As I alluded to in the previous point, my cognitive playground is constantly changing.

Generally, you might assume that “recovery from injury” will involve steady increases in improvement back to a baseline of good health. But this isn’t the case when it comes to the brain (and many chronic illnesses). It’s much more like a constant rollercoaster that lurches up and down, forwards and backwards, at any and all inclines. And at any range of velocities.

This means I’m constantly reorienting myself to an unfamiliar toolkit. Some days I can write 500 words before the fatigue kicks in; sometimes I spend a couple hours cobbling together 50, before needing to retire my mental efforts for the day. Some days I tidily knock off 10 items on my to-do list, while other days it’s a struggle to handle 2. This, coming from a “doer” and “go-getter,” is an especially tough pill to swallow.

The level of uncertainty that comes with brain injury recovery makes it hard to stand on your own two feet. It’s hard to schedule future plans, let alone commit to the responsibilities of school or work, when your functioning is inconsistent and unpredictable.

You’re caught in a catch-22: you want to orient your present self towards a destination; yet it’s hard to decide what that destination should be, since you have little idea of what capabilities your future self will arrive with. Maybe you’ll have the capacity to rise to the demands of the situation; maybe you won’t. In the latter case, you become prone to overextending yourself unless you learn to honour the limits of your body.

Any setback messes with your head, leaving you to question your judgement of past progress and how reliable your memory is. And with some conditions, such as autoimmune encephalitis, setbacks come with the question of whether the cause of the brain injury may be resurfacing—or if the cause was never fully resolved in the first place.

The ups and downs of brain injury recovery are destabilizing, as you never quite know how to evaluate your present state or forecast your future state.

3. You can’t relate with people in the same manner as before.

“How are you” is a simple question, yet I usually end up stumbling through the answer. There’s multiple layers to the truth here—which one is appropriate for the context at hand?

In many situations it’s easier to answer “I’m fine” than to delve into any details. Plus, it’s really more of a pleasantry than an honest question. You’re not going to tell the barista that you’re feeling frustrated trying to function with half your brain. But things get tricky when it comes to friends, family, and coworkers.

Yes, part of them wants to hear how recovery is going; but it’s also natural for them to assume a recovery quicker than how it really is,  and to have plenty of other considerations on their mind. I can tell some people get bored hearing me discuss my health, and I can’t blame them: there is so much more to life beyond the strange goings-on of my brain! I’d like to be discussing (hypothetical) cool places I’ve been going, the latest thing I’ve learned, or the hobbies I’ve taken up, too. But my reality is different. It’s dominated by medical appointments, naps, and attempts to implement strategies for overcoming my cognitive deficits. The energy to diversify my interests is few and far between.

As a result, I often end up glossing over how I’m really doing, and stretching myself to have an organic interaction based on the conversational inputs from the other person.

This puts me in a weird and uncomfortable headspace. You end up reflecting on your slow pace of recovery, questioning your mental preoccupations, and overthinking the mechanics of how to relate with others. You consider “maybe if people showed genuine interest in how I’m doing, I could get the truth off my chest and cleanse my mind for discussing other topics,” then start to wonder whether you’re botching all your social interactions. Then you talk to someone whose general attitude screams “just pull yourself together already!” and suddenly remember why you’ve grown accustomed to minimizing your inner state.

Besides the emotional complications, there’s the difficulties posed by the brain deficits themselves. My verbal fluency and processing speed are heavily impacted, which makes it hard to catch the rhythm of group dynamics and figure out how to contribute to conversations. Try as I will to be present in the moment, it’s hard not to become anxious and self-conscious as I witness my brain faltering in ways that used to be reliable.

Unfulfilling social interactions can leave you with an acute feeling of grief as you’re reminded of how radically your brains have been altered. The result is a unique sense of loneliness as you fail to acknowledge your inner world to others.

brain, birds

Making the best of what you have today

It’s easy to feel discouraged by the invisible realities that come with brain injury. There’s a lot to contend with in the aftermath of such a devastating setback. 

However, the field of neuroplasticity has taught us that the brain is a resilient organ. It can adapt to compensate for injury, restoring functionalities that were once severely impaired.

My own recoveries are a testament to what’s possible: I’ve bounced back from autoimmune encephalitis relapses several times, going from as low as 25% of my baseline level of functioning back up to 95-100%. A few months after my hospitalization last year, I became well enough to find my feet as a full-time Communications Manager, travel abroad, and build a life beyond any health limitations.

But what can you do in the meantime, while recovery feels out of reach? Frankly, this is a daily reassessment for me that I hope to cover in a future post. But for today, I have a couple quick suggestions.

If you have the mobility, get outside. Fresh air and walks in nature are good for your health, restorative for the soul, and help with getting you out of your head.

If you’re stuck inside, don’t isolate yourself further. Find an online community, if you don’t have a trusted friend or family member you feel comfortable reaching out to. Facebook groups are a wonderful outcome of the polarizing social media platform. Even if you’re not up for conversation, it’s powerful to read what others are posting and to realize you’re not alone.

For more insight into what autoimmune encephalitis recovery looks like, read more below or find me on Instagram, Facebook, or Twitter.

 

wherearemypillows bio

WhereAreMyPillows is a seronegative AE survivor from Canada. Her favourite activities include writing on her health blog, taking photos, doing yoga, and finding her next spot to take a nap. 

Join her on the IAES Facebook group, and on her WhereAreMyPillows Facebook PageInstagram, and Twitter pages #wherearemypillows

 

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

seal - From on the Fritz to on the Mend: The Invisible Realities of Brain Injury Recovery

 

 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 - From on the Fritz to on the Mend: The Invisible Realities of Brain Injury Recovery

 For those 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 - From on the Fritz to on the Mend: The Invisible Realities of Brain Injury Recovery 

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

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

 

This is Seronegative Autoimmune Encephalitis, 1 Year Later

This is Seronegative Autoimmune Encephalitis, 1 Year Later

September 12, 2020 | By WhereAreMyPillows.com for the International Autoimmune Encephalitis Society

A few weeks ago, I celebrated the 1 year anniversary of my discharge from hospital.

There’s been tons of ups, as well as some downs in the past year—but ultimately, I write this to provide a message of hope to those that are having a hard time with autoimmune encephalitis (AE) right now. 

My journey began in 2014, when I suffered a flu-like illness after which I was never quite the same. For 5 years I lived with a mystery illness that was slow to settle in and occasionally remitted, but progressively robbed me of my key cognitive abilities. I dropped out of university (twice) and suffered countless periods where I felt like the living dead. 

The future became increasingly bleak, as I lost trust in my basic ability to think—let alone the capacity to ever make a living for myself.

Then summer 2019 came.

Through the haze, there’s one memory that sticks out: laying in a hospital bed for the first time, and looking over at my mom. I told her I thought this hospital stay was my last hope of ever getting better. 

Imagine the heartbreak she must have felt in that moment.

To her credit, she channeled my ominous words into sharpening her advocacy efforts. While my mind was adrift in a catatonic stupor, she fielded questions from a bevy of unhelpful specialists who looked at her with scrutiny and disdain. Being the determined woman that she is, she held her ground and didn’t let anyone push her around. 

My mom tells me at least 4 neurologists came by—and all were absolute crap. They either thought I was fine, or that I was a crazy malingerer. But thanks to her insistence that something was medically wrong, a specific psychiatrist was sought out as a consultant to my case.

I consider that one psychiatrist my angel: she fought for the PET scan crucial to my diagnosis, as well as the Rituximab a medical committee tried to bar me from accessing. I’m fortunate that my mom and psychiatrist never gave up on me, even after my inadequate response to the steroids and IVIG initially administered. At one point I felt like my life was over, but lo and behold: 7 weeks after my first Rituximab infusion, I started experiencing significant gains. By week 10, I had gotten about ~95% back to baseline. The end of 2019 and early 2020 are some of the best months I’ve ever experienced. 

I wish the story ended here, but the fact of the matter is that some challenges remain. I’m back on the mend via Rituximab again, after experiencing a relapse this spring. You can read more details about what’s happened since then at www.wherearemypillows.com.

Despite the setback, I’ve improved considerably from my worst points last summer, and consider myself lucky to have parts of my brain back I thought I had permanently lost. Though my recovery has stretched on longer than anticipated, the important thing is that it progresses upwards nonetheless.

In the meantime, I’m grateful to have a community of fellow AE warriors to fall back on. I want to shout a huge THANK YOU to the International Autoimmune Encephalitis Society and their lively Facebook group, which has provided me with endless emotional support and a pool of knowledge with which to fight my personal AE battle. It’s humbling to be in a position now to pay it forward and help others touched by AE—and to further this personal mission, I’m delighted to announce that I’ll be sharing my experiences in a new #WhereAreMyPillows monthly column. These will be published right here on the IAES blog!

While none of us want to be running this marathon, I hope that the burden of AE is a bit lighter knowing that you’re not alone. I got back on my feet after 5 years of misdiagnosis— a reality that seemed a mere pipedream just a year ago. Don’t give up and don’t lose hope!

 

wherearemypillows bio

WhereAreMyPillows is a seronegative AE survivor from Canada. Her favourite activities include writing on her health blog, taking photos, doing yoga, and finding her next spot to take a nap. 

Join her on the IAES Facebook group, and on her WhereAreMyPillows Facebook PageInstagram, and Twitter pages #wherearemypillows

 

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

seal - This is Seronegative Autoimmune Encephalitis, 1 Year Later

 

 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 - This is Seronegative Autoimmune Encephalitis, 1 Year Later

 For those 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 - This is Seronegative Autoimmune Encephalitis, 1 Year Later 

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

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

 

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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