Hey everyone, I've had symptoms of some sort of dysautonomia since I was 15 after I had a serious traumatic injury but because of my past anxiety it's always been treated as a mental health condition. I sought help for dizziness back in 2014 when I was on an SNRI Effexor. Effexor has messed me up so badly in so many ways. I believe my primary care doctor put me on clonodine at this time because I had the bottle left over from that time but I had only taken one or two pills and had a bad reaction. I've been diagnosed with panic disorder, generalized anxiety disorder, bipolar II, depressive disorder and post traumatic stress disorder. I definitely have PTSD, but I've greatly improved all symptoms in the past year after extensive CBT therapy. Bipolar II made sense because I'd have these adrenaline like surges and wouldn't sleep for days, but I never acted manically, never did any risky behavior or behaved differently. I can be loose with my wallet when I don't feel good, but never overdraft and I keep within a budget I don't go over.
Because of my improvement, and finally being off of antidepressants for the first time in 6 years (every class short of MAOIs), I actually started taking the symptoms I've been experiencing as something possibly not mental health related. Constant dizziness, fatigue, irritability when standing that goes away when I lay down, high heart rate (I've been tracking it, it's above 125 bpm usually after standing even if I'm not moving around. My resting is around 89 bpm. My blood pressure is high), feeling like I'm going to pass out very frequently, short term memory loss, brain fog, overactive digestive issues, over frequent urination, increases in symptoms in extreme heat and cold. I almost passed out or did for a brief second while driving during this heat wave this past week, and I finally am seeing a cardiologist. I went to my primary care and he said it was autonomic nervous system related specifically because of my heart and breathing not making sense when he was listening, but needed a specialist to look at me. I feel like it's hyper-POTS but I'm no expert.
I'm really hoping the cardiologist I see tomorrow will have some answers and some solutions. I'm really worried that I'm actually going to pass out at some point, especially if I have to walk long distances. I walk dogs and I know my threshold is about 30 minutes, which is fortunate because that's how long my longest visit is! I sometimes have to take breaks when walking and sit and the dogs don't judge me or get upset with me. It's also my own business and my clients are all super understanding. We're possibly going to Disney World in November/December and I've been in a wheelchair there before for the debilitating back pain from my injury and I'd like to not have to do it again (I hated the attention of being a 15/16 year old in a wheelchair) but understand if I do to stay safe. I also have pretty bad joint pain and my joints all "pop" especially after walking long distances or swimming, and my friend told me to get checked for EDS, but I don't really know where to start for that or who my insurance would cover. I've had all sorts of joint injuries and sprained ankles and wrists multiple times in things that were not all that bad.
Fortunately and unfortunately, I qualify as disabled from my PTSD for a few reasons as well as medication not helping, and I have started training a service dog last November. She was our pet, but she had been temperament tested to be a working dog and had great results. She has quite a few tasks down that help with both the dizzy spells and the PTSD. What I thought was a panic attack, my heart rate being so high, has translated into a task for her. She alerts me when my heart rate is above 120 bpm (when I started noticing feeling panicky or sick, before I did any research on POTS) by nudging me, then if I'm dissociated/ feeling like I'm going to pass out or from an anxiety trigger, she leads me to a safe place to sit down and does deep pressure therapy until I'm feeling better. It's been slow going but she did this for the first time in public last week, and I'm so lucky to have her. She can even be annoying when I feel really dizzy: she will stop in her tracks and sit and look at me when I'm really bad and as soon as she does DPT and my heart rate is back down we go about our merry way. I do feel a little better about that, and look forward to when she's fully trained and I feel confident her Public Access skills are down. I don't know if she'll be ready by the time we go to Florida, but she is almost there. I attached a picture of her for those who love dogs!
Thank you for reading!