Long story short my parents gaslit me into believing I’d had anxiety with unrelated sleep issues all my life. It became a normalized joke that I’d sleep walk or beat them as a kid while I was sleeping. The sleep issues probably started from when I was around 4-5. Anxiety was diagnosed when I was 9 or 10. I’ve had hyperkinetic nocturnal seizures for (probably) 20+ years. My, “anxiety,” is actually an autonomic form of epilepsy. So no shit I was anxious. It was so validating to see the EEG and EMU info and have proof that I wasn’t overreacting.
I actually work(ed) in behavioral healthcare because of the positive influence my therapists and CBT have had on me. I only started assuming it wasn’t anxiety related when it started affecting my work performance. My job let me go because I was calling off so much. I’d have all the symptoms of my, “panic attacks,” but never had any internalized anxiety. So I’d be doing my mindfulness/CBT/etc and then realize, “this isn’t helping- if anything it’s making this worse,”.
Prior to being prescribed Briviact I was waking up in the middle of the night or early in the morning gasping for air or vomiting because my hr and bp slowed down so much 🙃. These episodes have gone down from 3-5 times a week to once or twice a month which has made a huge difference, but I’ve still been having a lot of issues with passing out that are looking more and more to be related to the autonomic seizures. My neurologist is still going over my results and trying to figure out the type of epilepsy I have and if medication actually makes sense to continue trying vs alternative options.
One of my biggest issues right now is that I almost always get an aura but can’t recognize that it’s a sign of a seizure. I’m so used to interpreting every physical sensation as anxiety that I immediately assume it’s that even if I’m not anxious. So basically I just ignore or redirect the internalization (as if it were anxiety) which obviously isn’t helpful for seizures.
I don’t have much of a support system beyond my therapist and neurologist. Right now I’m planning on going back to school (thankfully this will also allow me to continue receiving health insurance), and taking advantage of some of the ADA benefits my city has for public transportation. I’d like to get a service dog in the future but I know that that’s a long process. I’d really appreciate any advice from others.