hi hey hello!!! its been a LONG time!! i haven't written a post in about a year and oh wow a lot has happened! many many treatments, appointments, med changes, and er visits.
so after i was admitted in november, i slowly got a hold of my headaches and was making very small progress. i was still in pt twice a week and met with neurology every three weeks.
in february, i had the second set of botox, a few neuro appts, cardio consult for POTS, a holter monitor, med changes, and pt. i had no control over my headaches and i wasn't able to do much. my POTS symptoms were extremely out of control as well.
in march, i had another set of nerve blocks after er visits and met with neurology (he's basically my bestie by now). everything was so out of control. i don't even know how i wasn't admitted. in april and may i saw neurology and cardio like three times and really nothing came out of those appointments. may was more nerve blocks and botox and appointments. symptoms were so wacky but i graduated!!
june and july were HARD. appointments, bad news, med changes, and er visits. i was admitted in july for ketamine and that sucked. the side effects were awful but we started seeing some progress!
in august, i cancelled botox and started ajovy. i've had SO much relief from it!!! it was my two year anniversary from spinal fusion and getting sick. i also started acupuncture and started seeing pain management again. we also tested for lyme! september was many appointments and i started getting iv fluids.
october was a lot of pain management, infusions, and treatments but everything was pretty well controlled! i saw neurology after three months and i ended up in ER because i lost my vision (ended up being a complex migraine) and more heavy metal testing! (all perfectly normal)
november and december were hard trying to manage treatments and insurance. january started with losing nursing (so we had to do all of my infusion care, until a church friend offered until i got my port) and meeting with a surgeon to place a port. the surgery consult on january 17th went absolutely amazing and she is one of the best drs ive ever seen. she strongly recommends a port asap and we scheduled it for the 20th!
the day before placement, my covid test came back positive along with my surgeon's. surgery was rescheduled for february 17th. totally sucky. but placement went well!
so now its february and everything is so stable!!! headaches/migraine is nearly non existent and POTS is very manageable!