Life After PANS: When PTSD Makes It Not Really Over

Today, I live my life free from PANS psychiatric shackles and its medical mayhem. At this point, I’ve mostly forgotten where I came from and how sick I used to be. PANS no longer affects me… or so I think.

Years ago, I was able to lock away the feelings of terror and despair that were once my constant companions. I now choose to live in the present and do my best to make the most of this second chance at life I’ve been given. Why think about the horrors of the past when I can make a new and better future for myself?

But the truth is that it’s all still right there, churning beneath the surface and ready to start gushing out the moment I encounter a trigger. 

In the PANS world, we usually talk about “triggers” as infections and viruses that rev up the immune system and set off a PANS flare. Nowadays, my main triggers are not as much immune system problems. My triggers are found beneath the fluorescent lights of hospitals and in the words of unsuspecting doctors and nurses. 

My triggers are those situations that set off my PTSD and force me to relive the worst hours of my life.

When I was in the depths of PANS, had you asked me, I would have said I was suffering. I would have said I often didn’t know how I’d survive another day. In a flare, I would scream that I wanted to die because the pain was that bad. And yet, the thing about having an inflamed brain is that you may be unable to fully process what you’re going through. 

It was only after I started to get better that the full terrors of what I went through with PANS began to sink in and leave me grieving for the time I lost. Even then, it was so raw that I gradually put those experiences out of my mind and did my best to move on. I never let myself accept how awful living with PANS truly was because it was too much to process. Years later, it’s all come bubbling to the surface.

I now know that what I experienced at the hands of PANS was nothing short of horrific. 

I know because of how terrified I am of situations that I know will set me off––the thought of having to ever re-experience the nearly unbearable sensation of despair, rage, and panic from a brain on fire is too much to take in. I know because I’ll do almost anything to avoid my triggers, even avoiding needed medical care until the problem is serious enough that I can no longer ignore it.

I know because the last time a needle went near my arm, I spent the next forty minutes shaking and dissociating. The multiple weeks of IV steroids that saved my life in 2017 destroyed my veins and created an association where needles in arms put me right back in the tormented headspace of a life-threatening PANS relapse. The needle tells my brain that I’m sick again, and living in a waking nightmare, and this healthy version of myself that’s lucid enough to understand has to face the full horrors of PANS head-on.

I know because the moment I was asked to put on a hospital gown at an eating disorder treatment program three years ago, I practically went running out of the building in a panic attack. It was too much of a reminder of all the procedures I needed over the years during flares, when I had to put a gown on to do something painful that may or may not help.

I know because when a kind doctor told me an injury was “not clear cut,” I went to my car and cried for half an hour––not because of my physical pain, but because those were the exact words used over the years when doctors dismissed me without making any attempt at help. In that moment, I couldn’t see that this wasn’t just another dismissive doctor even when he was actually committed to being helpful.

I know because right now, it’s the afternoon before minor surgery for said injury, and I’ve spent the whole day panicking… In fact, I’ve spent the last two months, ever since I committed to surgery, panicking to varying degrees. I thought I’d worked through my anxiety and PTSD with my psychiatrist enough during this time, but then the nurse called to tell me I have to be at the hospital at 5:15 AM tomorrow. I lost it right then and there on the phone. The early time was a shock, and when I’m already on the verge of trauma-based panic, surprises push me over the edge. Every time I think I’ve worked through my trauma, it just comes right back.

I know how bad PANS once was, and how terrified I am to relive it, because I almost cancelled the whole surgery… I still might if I panic really badly tomorrow. I often think to myself that I’d rather just leave a highly treatable injury unaddressed than relive the time when my brain was on fire. I’d rather be stuck in physical pain than set off the psychological pain all over again. There is not much worse than the pain of an inflamed brain burning away the core of who you are, destroying your life and everything that defined you in the process.

PANS is brain surgery while wide awake with no anesthetic, but the surgeon is a maniacal disease determined to ruin you. You’re forced to watch and endure as it tears you apart, bit by bit by bit.

And yet, because I’ve survived this horror of an illness, I have to remind myself that few things are truly hard by comparison. More importantly, tomorrow, I won’t be in a hospital suffering from an agonizing brain illness while doctors look on and refuse to help. Tomorrow, I will be getting routine care for a routine problem under the care of an experienced surgeon who is actually one of the kindest doctors I’ve ever encountered. Tomorrow’s procedure has absolutely nothing to do with PANS.

Still, the intrusive thoughts are strong.

I try to visualize myself done with surgery, happy and relieved of pain, and all I can see is me panicking the moment I arrive in the pre-op area. Then I see myself putting my arm on the operating table and losing control when the resident starts with the antiseptic, because it’s entirely too similar to getting an IV. The combination of sensory stimuli (hospital lights, procedure room, and antiseptic) might send me right back to the headspace of the worst of PANS.

I have no fear of surgery itself—only of my own mind and the ongoing suffering it inflicts via trauma responses.

Truth be told, I might panic. I might have a PTSD episode. I might re-experience a traumatic time through emotional flashbacks. Nevertheless, I will keep reminding myself that this is not 2017. I fought that battle, and I won. Tomorrow I will take my anxiety meds. I will have a support person who knows my triggers stay with me until the very last moment. And most importantly, I will keep telling myself that I’m safe until I somehow believe it…

Update: Read Part 2, “Do the Thing You Think You Cannot Do: Overcoming PANS PTSD Triggers”

Follow more of my journey at and @DreamingPanda1 on Twitter.

9 thoughts on “Life After PANS: When PTSD Makes It Not Really Over

  1. I can relate to this so much. I am on the other side, a parent with ptsd from this experience. Reading your posts has been very insightful.

  2. Good to hear from you! So glad it went well! You continue to be an inspiration! When you get to it, I’d like to know what you think is SOT and Lymestop!! Take care!

    1. Thank you! And good to hear from you as well.

      I’m not sure what SOT is. As far as Lymestop, there are many other ways I would spend $3800 first. The guy running it isn’t even a physician, making him unqualified to treat an infection like Lyme. TMS, another form of magnetic stimulation, actually has some good data behind it for treating certain psychiatric symptoms, and it can be covered by insurance. Without knowing technical specifics of Lymestop vs TMS, I’d say it’s not impossible that Lymestop’s magnets are doing something, but if I were going to use magnets in my recovery, TMS is where I would look first for many reasons.

      This is not medical advice, either, but I would also first look into something called the Perrin Technique, which was pioneered by an osteopathic physician. In fact I already have been incorporating it myself. The basic hypothesis there is that poor lymphatic drainage causes infections to persist. The Lymestop founder may be getting at that a bit, but I’d rather see a Perrin practitioner or osteopath. The Perrin Technique has mainly been looked at in ME, but it would likely help Lyme patients as well. Fortunately seeing osteopaths is typically covered by insurance since they’re physicians. They have all the same training as medical doctors plus training in osteopathic manipulative therapy, which makes them far more qualified than the average chiropractor. I wish more people were aware of osteopaths… maybe I need to do a post about my experiences there!

  3. I always love to hear your updates! As a grandmother of a 13 year old grandson and a 9 year old granddaughter who has PANDAS, it is so encouraging to read that you continue to do well. My grandson’s onset was at age 6. After many ivig’s, rituximab, steroids, supplements, tonsils and andenoid removed and the removal of his parents tonsils and adenoids removed (his father had strep and mrsa hiding in his tonsils and he never once tested positive for strep!) and antibiotics he is doing well. My granddaughter’s onset was age 2 and a half and she is doing well now too! Lots of tweaks along the way with supplements, steroids and changing of antibiotics but praise God they are doing well! I am glad you are doing better now too!❤️

  4. You’re truly an inspiration & a beacon of hope for others who are suffering. I’m sure the surgery will go well & you will get through it all. Maybe you can request a topical anesthetic prior to the IV going in. Will say a prayer for you. XO

  5. I’ll be thinking of you all day. Please write a follow up of how you did.

    Between 8-9 years old, I had PANS. It was incredibly terrifying….I’m 48 years old now. The only way I can describe is that I’m extremely phobic of feeling anxious….completely triggers me.

    1. Thanks so much! It went great, and I only briefly panicked once at the hospital. I’m working on a follow-up post… And you’re so right about being anxious being triggering. It creates a feedback loop where you get triggered and then get more triggered by being triggered. It’s rough. I’m glad you no longer have PANS!

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