The Bad Guys Are After Me: PANS-Related PTSD in Pandemic Times

It was 2:30 in the morning when I awoke to a knock on my door and opened my eyes to see a man in black standing over me. My heart pounding, my sheets drenched in sweat, I tried to scream, but all that came out was barely a mumble.

And then he was gone.

It wasn’t real… Or was it? I sat up and shone a flashlight all around my bed, and in my closet and bathroom looking for the intruder. How could I be sure it was a hallucination when I really did see a person in my room? How was I supposed to get back to sleep when I wasn’t 100% sure the whole thing didn’t happen?

For the last couple of months, I’ve had the same dream-hallucination over and over and over again: a knock on my door and a bad guy coming into my room. Sometimes, I wake myself up screaming, sitting bolt upright in bed. Sometimes, a knock on my door or a loud bang awakens me (which my family never hears, so I know it’s in my head). Worse, I sometimes have nights where this dream happens two or three or four times.

Any nightmare is by definition disturbing and can cause someone to wake up feeling upset. A nightmare that seems realistic is even worse. But a nightmare that continues into a hypnopompic hallucination is downright terrifying. What makes something a hypnopompic hallucination versus a nightmare is that you’re perceiving things that aren’t there after you’ve started waking up. Thus, they can seem very real.

And for me, knowing that, based on recent trends, there’s at least a 50% chance this nightmare/hallucination will happen that night… Well, sometimes I put off going to bed because of it.

Over the years, vivid nightmares and nighttime hallucinations have usually been a symptom of a PANS relapse for me. I used to go months between hallucinations, so if one happened again, I’d know a flare was coming. The scariest one I had (in the middle of a flare) a few years ago was waking up to a giant bear with sharp teeth and glowing green eyes snarling at me by my bed.

After a hallucination, I often feel the need to check my room for intruders once I’m fully awake, even though I know the person is almost certainly not real. My OCD loves to come in to say, “But what if it is real this time?” And then: “Are you sure you checked everywhere?” So sometimes I have to go through the checking process again. During the day, I have the insight and willpower to ignore these types of OCD thoughts, but in the middle of the night, it’s really difficult.

I’ve been told by therapists that I have PTSD as a result of my medical ordeals.

I’ve worked through some of it in therapy, but I don’t know if I’ll ever get over the feeling of being assaulted by my own body, my illness mangling my brain and mind, stripping away who I thought I was. In some ways, it was almost more traumatic when I got better, because then I regained the insight to understand how far gone I’d mentally been. Even after writing ~250,000 words on my blog and in my upcoming book, I still don’t think I’ve fully captured the terror that is PANS, or Basal Ganglia Encephalitis.

I believe the recurring nightmare is a metaphor for my encephalitis. The knock on my door is the virus that triggered it in the first place, and the bad guy is the rogue antibodies that came into my brain. The antibodies assaulted my mind by way of my brain, just like a bad guy attacking someone in their own bed. I spent years trying to recover and heal from the damage of my illness. No one should be surprised I’m a little haunted.

I’d had a long stretch without the nightmares, until after I had a flare last month. They didn’t happen during the flare––only after it, when I had to sit with the idea that the bad guys had visited my brain yet again. Fortunately, a few days of Prednisone completely calmed the symptoms of the flare themselves. But steroids don’t do anything for emotional distress that isn’t directly caused by inflammation.

I had a couple of good weeks recently without nightmares…

But now the dreams have started up again.

Watching COVID cases skyrocket due to the new variant, it feels like the bad guys are coming for me. Some people are even saying getting infected is “inevitable.” The bad guys are coming no matter what I do, I think to myself. They’re just waiting for me to get sick so they can come kidnap me again.

The other day, I found myself wondering why I was having nightmares again and also feeling a strange sense of impending doom. Was this another flare? But then I realized… There’s been an effing global pandemic for two years, and things are about to get really bad again. And for two years, I’ve had to watch and listen to people say they don’t care if people like me get sick and die. I’ve had to hear that I’m an acceptable casualty because someone’s “right” to not wear a piece of cloth is more important.

Why am I so anxious about getting COVID? I likely didn’t mount as robust a response to the vaccine as a healthy person, although I finally made some antibodies after a third shot in September. The fact I already have Myalgic E. and dysautonomia puts me at high risk for Long-COVID and a potentially permanent worsening of my conditions. I have multiple years of experience where I get a mild or asymptomatic virus, it triggers the bad-guy antibodies, and I end up with debilitating neurological symptoms for months or years after. Hopefully being triple-vaccinated makes this less likely, but there’s not enough data to know for sure. I already barely function well enough to maintain a career. If I get any worse, I could lose it all.

But I try not to think about the pandemic too much.

My family is extremely fortunate that we can stay home. We’re pretty much not going anywhere for the next two months, or however long it is until the new treatments are widely available. No gatherings, and minimal trips to the store. The windows and doors are figuratively barred… Still, I worry that somehow the bad guys will find their way into the house.

But you know what? Right now, the bad guys in my room really are just a bad dream. They’re not here. I’m safe and as healthy as I can be as someone with M.E.. I have to focus on the here and now, and just take it one day at a time. I don’t have to get through the next two months all at once. All I have to do is what’s next, today.

I think we can all agree that ending 2021 with the worst COVID surge yet is not the kind of “bang” on which any of us wanted to end the year. But I hope you all are able to take every precaution available to keep the bad guys out of your homes as well. Let’s all hope and pray that 2022 is the year when we can all put the nightmare of COVID behind us. Let’s hope that the silver lining becomes better treatments for neuroimmune and post-infectious illnesses like PANS, encephalitis, ME, and Lyme. I believe this will be the case. We just have to keep hanging in there, taking precautions, and not losing hope for better times ahead.


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Grad School Round 2: Conquering the Ghosts of PANS Past

A few months ago, I made a scary last-minute decision: I was going to re-apply to grad school, this time at “State University,” close to home. And today, I successfully got through my first class!

As many of you know, I did a year of grad school at a competitive program out of state before Myalgic E waltzed into my life and forced me to abandon my education, at least for a while. But this spring, after a lot of improvement due to a round of Rituxan, it started to bother me that I hadn’t finished school. I realized after two years away, it was finally realistic to go back, at least part-time.

But what I didn’t realize was the reality of going back to school. I didn’t realize how different it would feel after being in industry for two years and being three years older than when I started. But even more, I didn’t realize how compromised my brain is in more ways than one.

Like many schools, mine required entrance exams, which were online this year. I petitioned to be exempt since I already had a year of grad school behind me, but the school came back and said they would use a shortened version to determine if one of my classes would transfer or not. So there I was, with a week until the exam deadline, trying to relearn material I hadn’t thought about in four years, since undergrad.

But no sooner had I got out my old class notes from undergrad that the ghosts of PANS past came back to haunt me.

Homework

If you’re new to my blog, then you don’t know the disaster that was the last semester of college. My encephalitis started to come back the week before classes started, and it just got worse and worse from there. My brain was so inflamed that it took multiple weeks of IV steroids to come out of it! Rather than reinvent the wheel, I’ll share a paraphrased excerpt from the book I wrote about succeeding in college with a chronic illness that gives a tiny sense of why that semester was so hard:

Although I had been physically in class every day that semester, it was truly as if I had been gone for the first two months. After I ‘returned,’ I had to re-learn all the material, starting from square one in some areas. My professors had graciously removed all deadlines of assignments for the rest of the semester when I told them what was going on, and that’s the only reason I didn’t outright fail.

However, my ability to read, stay focused, and figure out how to break down tasks into smaller, manageable steps were always some of the last aspects to improve after an encephalitis relapse. Getting through the rest of that semester would mean scaling a mountain with two broken legs and two badly sprained arms.

To this day, I have nightmares that I didn’t finish catching up on all of the assignments I missed in that last semester. I have dreams where a professor informs me that I didn’t actually graduate, and I have to go back and take the hardest class of my major again. For a long time, I couldn’t believe I had really pulled it off, but I also did my very best to forget what that semester was like as soon as I finished writing my (yet to be published) book.

But the other week as I studied, it was impossible to forget. There in the lines of my class notebook from that semester, you could see plainly the decline in my handwriting from the first day of class to right before I got steroids. (A decline in handwriting abilities is a hallmark symptom of Basal Ganglia Encephalits, aka PANS.) And then you could tell when I got the steroids, because then my handwriting was neater than ever. It was eerie in an intimate way that re-reading my blog never has been.

Again, I tried not to dwell on that semester too much as I studied the material in the notebook. But a couple of days later, when I went to take the exam, it came back to me yet again.

Before I even started the test, I was shaking all over, and my heart was starting to pound. I told myself I would do fine because of how hard I had studied, but it was no use. As soon as I opened the test, I completely choked and couldn’t remember anything. Then I was in a true panic attack, having a meltdown all over again, just like I might have when my brain was inflamed.

Test-taking anxiety (at least to that degree) has never been something I struggled with. This was a trauma response. This was my body remembering all of the pent up fight-or-flight that I constantly lived in while facing PANS and trying to get through college. This was remembering the times when I was fighting to use every once of strength just to show up to class. This was feeling the pressure again of being in one of the hardest majors of the university while also horribly ill.

Time and time again, even three years on from the last time I felt like a PANS patient, I realize how traumatic the whole thing really was. I didn’t realize that at the time because I was just trying to get through, and my brain was too inflamed to understand. It was after I started to improve that I realized something very terrible had happened to me, and now I was going to be spending who knows how long trying to get back all of my “self.” PANS is an invisible trauma that’s impossible to understand until you live it.

It’s no wonder that so many things related to that time in my life will still evoke a panic attack.

Nevertheless, I was able to calm down enough to get through the test. And I did well enough for them to accept my credits!

Understandably, I was nervous about what other school-related triggers I might have, but I showed up to class this morning and didn’t panic. Actually, I enjoyed being in class again. Showing up on Zoom isn’t something I ever had to do in college, so maybe it is different enough not to trigger me. Maybe if I get through this semester, I’ll be able to go in-person eventually without panicking, either. It’s okay if you have to slowly work up to doing whatever it is you want to do. It’s okay that I have to go only online and take only one class at once.

There’s a lot messed up in the world right now, but I just wanted to share this victory of coming back to grad school after M.E. tried to stop me, and despite my PTSD. I don’t want to say “if I can do it, anyone can,” because we’re all unique and that’s not true. You can do things I can’t and vice versa. But I hope that maybe knowing that I have been able to go back to school after all that I’ve been through can be a ray of hope for anyone struggling or worrying about doing so themselves right now.

Quietly Out of Control

When most people who’ve dealt with PANDAS or PANS think about being out of control, what probably comes to mind are episodes of rage, debilitating OCD, constant tics, and panic attacks. While these things are the most characteristic of the disorder, during the last few weeks, I’ve been finding that sometimes, you can be out-of-control and look totally fine on the outside.

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Why I’m Better, Not Over It

This week, I woke up and cried.

99% of the time, I focus on how wonderful it is to be in remission, and I don’t allow myself to think about how awful my life used to be.  I don’t let myself feel sorry for myself.  I try to not dwell on the past.  But several nights per week, I have nightmares—most of which revolve around everything that happened to me.  And these are what break me.

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