I don’t have epilepsy.
Yes, I had a couple of seizures. The first one was directly after brain surgery last July, and brains don’t like being mucked around with so sometimes they freak out. Seizure. Understandable. The second one was in September, a couple of weeks after my first immunotherapy infusion. Immunotherapy is like the opposite of chemo. It tells the immune system to go ahead and do its thing, BUT IN ALL CAPS GO GO GO. A big immune response creates inflammation, all those juicy white blood cells going after cell mutations (aka cancer) and cleaning up the aftermath. On top of that I had radiation to a tumor in my spine, which created more inflammation. Next day — seizure. Again, my brain just freaked out from the massive overload. My EEG a couple of months later came back negative except for brain wave patterns expected for a person who had a tumor removed from their brain. No epilepsy.
So that’s the good news.
The other news is that I have secondary adrenal insufficiency.
My magical near-death I-choose-life emergency room experience last fall was probably brought on by an adrenal crisis, which is steps beyond adrenal insufficiency and is a thing people die from. My heart pounded beyond control and I felt like I couldn’t breathe, way beyond a panic attack. Nothing I could think of (breath techniques, relaxation techniques, OF COURSE I thought I could control it with my mind, hahaha) helped whatsoever and I thought I was about to die so my beloved called 911.
What’s kind of horrific and definitely ironic about my having secondary adrenal insufficiency is that it was likely brought on by taking prednisone (which means it was preventable, of only someone had mentioned it as a potential side effect!). I had to take prednisone to address acute liver inflammation brought on by the immunotherapy and my immune system doing such a bang up job of taking care of cell mutations (aka cancer). My liver was overwhelmed and I was in pain, nauseated, could barely eat. It’s way better now, getting better. But we didn’t know (and doctors failed to mention) that prednisone would mess up my adrenals and even permanently fuck with my pituitary. Gah.
Prednisone can be super helpful in the short term for quickly bringing down excess inflammation. Yay for medicine. But in the long term it messes with things.
What is secondary adrenal insufficiency? It’s when the adrenal glands don’t make enough cortisol. Cortisol is awesome stuff. It does a lot, and I don’t fully understand it all, but it relates to energy. Super low cortisol in the body = super low energy (and other things). My pituitary gland isn’t making enough of the stuff (ACTH) that tells the adrenals to make cortisol. Prednisone acts in part as a substitute for cortisol, so my body thinks it already has enough cortisol and doesn’t have to make any. After a long enough time, the pituitary and adrenals pretty much shut off their part in the cortisol-making factory, thus permanently relying on artificial sources of cortisol like prednisone and hydrocortisone.
Kind of a vicious cycle. Pump up the immune system to deal with cell mutations (aka cancer). Immune system on overdrive overwhelms the liver. Liver gets angry and inflamed, causing hepatitis. Prednisone helps calm the liver inflammation, but steals calcium from bones (I haven’t even yet mentioned the compression fractures in my spine) and tells the pituitary not to bother telling the adrenal glands to make cortisone anymore. We have enough, prednisone says. But prednisone isn’t like the cortisol the body makes naturally. No, no, no.
Prednisone and the way it affected my body’s system was the source of the anxiety I’ve felt for months now. Wired yet tired. Heart pounding every day as my cortisol levels see-sawed. I kept telling myself I could just breathe through it. Somehow I should have been able to fix it, I thought. One doctor said well of course you’re anxious, you’ve just had brain surgery and back surgery and radiation. I mean of course. Who wouldn’t be anxious?
No, no, no, no, no. Don’t just brush me off like that. Look deeper. There’s always a cause. You just have to know how to look.
This is where my beloved comes in. Regular doctors think my condition is permanent and that I will always have to take supplemental cortisone (now it’s mostly hydrocortisone, which is easier on the body than prednisone). NOT TRUE.
There is another way, but it requires time and patience and willingness to feel. And it takes knowledge about functional medicine, which most regular doctors don’t deal with. Not to knock doctors — I am alive in part because of the wonderful and caring doctors we’ve found, but they have limitations and often they are stuck in a narrow paradigm. We take the best wisdom from three medical worlds — allopathic, alternative, and functional. They all have a place in healing and we look for WHAT WORKS. My beloved, being a functional medicine practitioner, has the know-how about and access to ways to restart my adrenals and get my pituitary properly functioning again.
So. Secondary adrenal insufficiency. So what. I’ve heard worse things. I’ve gotten through harder things. This one will take time to get through but I have lots of time. And it’s teaching me to approach life and myself differently — softly, lovingly, nourishingly.
I’ve learned that there is magic in everything, if I am open to seeing it.
I love you.