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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My Experience with the Moderna COVID Vaccine as a Neuroimmune Patient

Ever since the beginning of the pandemic and the first mention of vaccine development, there has never once been a doubt in my mind about whether or not I would take it when available to me––of course I would get the shot to protect myself and those around me.

That decision may not seem noteworthy to most, but for me, as someone with a neuroimmune condition that can be triggered by vaccines, many people would say I had every reason not to get vaccinated. But considering only the theoretical risk of a vaccine without considering the benefits is short-sighted and irrational.

Continue reading “My Experience with the Moderna COVID Vaccine as a Neuroimmune Patient”