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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Not “Just Allergies:” The Major Neuroimmune Trigger You’re Probably Ignoring

It was a Saturday morning when something in me snapped. I had no strength to get out of bed, and even if I did, it seemed like nothing I would do today would matter. The massive weight of the numbness pinned me to the sheets, and tears began to flow. But what was I upset about? I had no idea. All I knew was that I couldn’t stop, and this meant the all-too-familiar brain inflammation-induced depression was back.

In hindsight, there were signs all week that this was coming. I’d had a hard time staying on task with my work despite how much I enjoyed it. I’d had more difficulty than usual getting started on anything. Yesterday, it had gotten to the point where I realized it would be better to take a day off from productivity rather than slog my way through hours of frustration.

And yesterday, something else had happened: my seasonal allergies returned in full force.

Continue reading “Not “Just Allergies:” The Major Neuroimmune Trigger You’re Probably Ignoring”

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”

6-Month Rituxan Update

With 6 months since my loading dose of Rituxan, I’m absolutely thrilled to say that I’m physically the best I’ve been in a couple of years. Mentally, I may be the best I’ve ever been since getting sick when I was eleven. 

As I mentioned in my 3-month update post, the progress has been slow but steady. As it was when recovering from PANS, it often has been so slow that I didn’t really know it was happening at all. 

Six months ago, it was all I could do to work for forty or fifty minutes at a time at my desk. I used to feel an overwhelming need to go lie down and would need to rest for at least an hour or two at that point. The most I could manage on the best day without crashing would be two or three hours of work.

This past week, I have been working for 4–8 hours per day without noticing. And just as telling, when I feel I need to take a break, it is mainly a mental break I need. And I feel like I need to get up and walk around and stretch rather than lie down—a completely typical urge for any healthy person I would say.

Mentally, I have come down to the lowest dose of one of my meds in over five years. Another one is the lowest it’s been in two years. But even more notable is that I am so focused on my work and friendships that I often forget that I’m technically sick.

I think I’m getting close to a time when I reveal what I do for a living and maybe even who I am, because it’s getting to a point where only talking about dealing with my illnesses feels completely one-dimensional. But for now I’ll just say that the latest project from my job might be my best work to date. I feel passionate about raising visibility for chronic illness and disability in my field, but I’m trying to figure out how that ties in with this blog.

Recently, I started seeing another specialist, and in looking through my medical records again, I was struck with a sobering realization: I never make it more than a couple of years before some virus or infection completely upends my life. I’m about to be at that two-year mark. 

Having a neuroimmune relapse feels less like a question of if so much as when. And things are going so well that I sometimes feel like surely something bad is about to happen. 

I no longer live in fear of a PANS relapse, but the reality of living with mild-moderate ME and POTS means it feels there’s always a possibility that it could all get worse again. How would I take it if it happened again? Now that I’m establishing myself in my field, I fear it would be even worse if everything fell apart all over again.

But instead of living in fear and worry, I’ve decided to be proactive about doing everything I can to prevent a worsening of my condition. I know I’ll get some pushback for saying this, but for me that has included getting the COVID vaccine. It’s much better to risk a flare and become immune to COVID rather than to take the risk of catching COVID and living with long-term complications. The “1% death rate” some harp about doesn’t even begin to tell the whole story of what’s really at stake. Some are forgetting that even mild viruses can upend a life with a neuroimmune condition.

But you know what? I haven’t flared from the Moderna vaccine so far a month later. We’ll see how the second dose goes, but I feel confident this was the right decision.

I’m planning a longer post in the future about why I chose to get the vaccine, but I just wanted to jump on here and give everyone a quick update that things are going really well.

I’ll probably post more soon about all of this, so stick around…

A 3-Month Post-Rituxan Update

Three months since starting the new treatment, Rituxan, I can finally say that I’ve made obvious progress. It’s been anything but linear, and yet I’m more hopeful than I have been in a long time.

You may have noticed I’m not posting on here much, and my Facebook and Twitter profiles also haven’t been updated. But this is actually great news. It means I’m busy living my life and don’t really want to think or write about my illnesses. 

However, I know there are people out there wondering how I’m doing, and I don’t want to break my six-year streak of posting once every calendar month. So I’m finally logging back on to give an update.

Continue reading “A 3-Month Post-Rituxan Update”

Rituxan and the Waiting Game…

I’ve finished my first two rounds of Rituximab infusions and am happy to report that they went very well! 

To be honest, I was terrified of this IV medicine after reading about the potential side-effects of killing your immune system’s B cells. So let’s just say that after getting through the first five-hour infusion, I felt downright triumphant for facing my fear. Continue reading “Rituxan and the Waiting Game…”

Self-Sabotage: Peeling Back the Onion of Baggage from Being Sick

Last week, I did something wild: I signed myself up for a multi-week professional development program.

I already have so much going on with finishing my book, but I’d applied a while ago to this selective program. So once they accepted me, how could I say no? Besides, I believe it will also indirectly help me with my book by making me structure my days better.

The fact I’m attempting this program is a big deal to me for a lot of reasons, but largely because of what it says about my mental state. For so many years while fighting PANS, I just didn’t have it in me to invest much in myself or my career. On the outside, my professors would praise my efforts because I was successful between flare-ups. On the inside, it was often half-hearted, and I constantly questioned if I even wanted to be in my field anymore or not.

Continue reading “Self-Sabotage: Peeling Back the Onion of Baggage from Being Sick”

Home from Partial Hospitalization

Last I wrote, I had resolved to do whatever it took to stay in the Partial Hospitalization program. And guess what happened? I left the program. 😬

Part of it is that my insurance only approved a certain number of days. I could have fought for more. However, the more I thought about the whole program, the more I began to realize why it was time to go home.

Continue reading “Home from Partial Hospitalization”

PHP Day 1: “I Won’t Put It On.”

Today was my first day of Partial Hospitalization, and it went both better and worse than I expected.

I don’t normally post two days in a row, but I’m in a writing mood and thought a few people might be interested in reading about my time in a partial hospitalization program for eating disorders over the next few days. I’m not sure if I’ll post every day or not, but today I need to talk about what happened. Continue reading “PHP Day 1: “I Won’t Put It On.””

The Perils of Partial Hospitalization—And Why I’ve Agreed to Go

“You need to go back,” my doctor warned me one day this summer.

I wiped the tears off my face and sighed. “I haven’t been able to walk more than a hundred feet in two months. You think I have energy for three hours of therapy three times a week?”

“You need the support… You’re getting worse and worse.”

I paused, knowing he wasn’t wrong—my psychiatrist is never wrong, and it’s maddening. “I know. But if going to therapy takes up all my energy, I’ll be too sick to participate. Isn’t there another way?”

Continue reading “The Perils of Partial Hospitalization—And Why I’ve Agreed to Go”