During my journey to my diagnosis of acute zonal occult outer retinopathy (AZOOR), I was called in for a fundus fluorescein angiography (which is easier if we just call it an FFA!) and an indocyanine green angiography (ICG) and it was one of my stranger appointments, but definitely not the worst.
I've been miserable before because of my health, but this was something else - l osing your sight is pretty scary! I've learned to cope with pain, but I'm not used to feeling so vulnerable and partially sighted.
You were probably expecting me to say that everything went black. It didn't. I got vivid rainbow hundred-and-thousands type floaters in my vision. Bright tiny little worms of colour, everywhere I looked, even if I shut my eyes.
Dysautonomia is a dysfunction of the autonomic nervous system which causes many symptoms, and which causes difficulties with controlling your heart rate, blood pressure, digestion, and more. This is usually life changing for many people, like me for an example.
Then my entire face went numb.
Coming off medication is so difficult and weaning myself off this time feels like hell on earth, but I'm looking forward to being side effect free!
I was officially diagnosed with Trigeminal Neuralgia by a neurologist, but I already knew I had TN the day after I experienced my worst symptoms. My first point of call was my dentist, as my pain seemed to be coming from my mouth, and within an hour of me seeing him, he said he was very sure I had neuralgia and to make a GP appointment ASAP. When I told my GP what my dentist had said, she sent a referral through for a neurology appointment. Sometimes your dentist really does know best.