I’m Having a PANS Flare. Here’s What It’s Like…

SPLAT. Suddenly, I hit the floor.

Without warning, my legs completely gave out, as if they forgot how to listen to my brain for a split second.

Had this been the first time this ever happened, it would be disturbing enough. But this has happened thousands of times over the years, and that’s what makes it even more disturbing. It’s never quite been settled if I’m having atonic seizures or some kind of autoimmune neuropathy or something else. But one thing is for sure: I only get drop attacks when my brain is inflamed.

I got back up right away, and tried to brush off the experience. Sure, I’d also had some mood issues recently, which are one of my first signs of a PANS flare. But a higher dose of Lamictal had taken care of the moods, so maybe it was something else. I actually thought the drop attack from a couple of days ago was just a fluke… Until today.

Nothing seemed amiss when I woke up this morning, although it felt a little harder than usual to find motivation to get going. I must have sat on my bed staring at the wall for a solid twenty minutes, even though I had an appointment to get to that I didn’t want to be late for. I just… Couldn’t make myself move. It feels like a lack of dopamine that means simple tasks are overwhelming.

Of course, I ended up being extremely late for my appointment, and that’s when I completely lost it in the car. Why can’t I just function like a normal person, I asked myself? Why is everything so much harder for me? And why has everything gotten worse lately?

And then I started crying and couldn’t stop. Every time I thought I got it under control, as soon as I started talking to my mom again, the waterworks resumed. Finally, we pulled into the parking lot, and I called to let the doctor know I was ready to come in… And preceded to have a panic attack as soon as I hung up. And it wasn’t just tears now, but full-body shakes and jitters that make it hard to even breathe––the kind of sobbing most people would only do when something horrible or catastrophic has happened.

Now, what you have to understand is that I feel very comfortable with this particular doctor and didn’t have any anxiety about the appointment. My frame of mind had nothing to do with the situation––it was completely random, or rather, it was related to a misfiring brain. In fact, I didn’t even feel upset emotionally, and I think that’s hard for most people to grasp when it looks like I’m having a crisis. My body just decides to make me cry and shake like that when my brain isn’t right.

I pulled myself together enough to go in, hoping and praying I wouldn’t fall apart again in front of the doctor…

When I get into my flare state, it’s anyone’s guess as to what will make me cry and how long it will take to stop. It’s like this outside force is messing with my emotions without any rhyme or reason. The medical term for this is “emotional lability,” which is one of the key symptoms of PANS for many people.

When I flare and experience that, one moment, I can feel complete and utter despair, and the next I might be high on life and planning project after project. Sometimes I may feel suspiciously okay most of the day in a flare, but then I’ll randomly get a panic attack out of nowhere and start thinking about wanting to die. It’s misfiring neurons that have nothing to do with anything happening. That said, when something external actually does go wrong and I happen to be in a flare, it’s like pouring gasoline on the fire in my brain, making it very hard to to reign in the resulting negative emotions.

Long story short, I fell apart again in front of the doctor, mid-injections. (I get Botox for my migraines every three months, and I must have been dissociating today because I barely felt anything this time for all thirty-one shots.) But she is a true gem of a doctor, and, after offering to let me lie down in the office and have some water, walked me out to the car herself to be sure I was alright.

I can’t overstate how comforting it feels to have a doctor actually help me rather than judge me for having psychiatric symptoms. I’ve been gaslit and condescended upon so many times over the years when it comes to my medical symptoms. Many other doctors have loved to pretend that a person can EITHER have psych or medical issues but not possibly both. But I digress…

I’ve known for a few weeks that my brain was on the fritz.

I had some very bad depression a few weeks ago out of nowhere. I started having some involuntary movements a few days ago, too, in addition to the drop attack. And the chatter in my head resumed yesterday… It’s this constant stream of intrusive thoughts that can be so “loud” it’s hard to even hear my own thoughts.

Fortunately, having been through ERP therapy for OCD means I’m better able to ignore the thoughts and don’t have to carry out compulsions to neutralize them, as I once had to hundreds of times per day. These intrusive thoughts no longer cause me distress so much as they are a nuisance. Still, I know that when the chatter starts up, there’s something going wrong in my Basal Ganglia.

It has been three years since I needed to do steroids for PANS’s Basal Ganglia inflammation, and I’m almost proud of that even though it’s not really an accomplishment. I never thought I would ever be able to go that long without a significant flare.

In more recent mini flare-ups, Alleve and time has been enough. But it’s become abundantly clear today that I’m not going to get better on my own. In the past, there was usually an infection to set off flares like this, and treating it would have stopped the flare. But infection has been ruled out, and that means one thing for me: it’s time to bust out the Prednisone again.

Tomorrow morning, I’ll break my three-year, Prednisone-free streak.

I think after I get better, there will be a lot of mixed emotions about this whole flare situation. But right now, all I can think about is hoping for relief. I just want to not randomly fall apart. I just want to not have such a hard time getting things done. And I just want something to stop the background despair that has lately become my emotional soundtrack.

I feel fairly certain I will get past this soon. I’ve been through this many times and survived much worse flares. So I know I will get through this one, too…


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2 thoughts on “I’m Having a PANS Flare. Here’s What It’s Like…

  1. You are amazing! Thanks for sharing this. You will get better again! You have to, it’s what we do! Move forward, rely on the knowledge that you have been here before and remember that you now have so many tools to use to get better again! I think that’s the scariest thing in the beginning is that we don’t know what in the heck is going on and we don’t know what to do about it or who to see for help. Thanks for continuing to be a voice in this PANS world. We have come along way in this community but we have a long way still to go. Thanks for continuing to speak about this so we can all continue to learn together and to continue to help those that come along after us!❤️

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