I believe my migraines started over 25 years ago, when I was still in jr. high or high school. I can’t be certain but I believe that they may have began following a probable concussion. It was spring and I was riding my horse for the first time since winter when my very gentle hoarse must have been pinched by the saddle or something, she bucked and I tried riding it out eventually falling on my head in the soft freshly plowed field. Concussions weren’t really talked about too much then, however as a registered nurse now I understand that we likely should have handled things differently. Later in the next week I would have a seizure out of the blue at school. I ended up being sent to the city for a neurologic work-up that didn’t really provide much of a reason for the seizure, even though I would have 2 more seizures within the next 24 hours. I do remember having headaches that would be so intense I had to unplug my alarm clock and feel like I was going to vomit.
Fast forward a few years, I was working in a small town hospital as a new/young nurse that was about to get married. I remember going into the doctor’s office after days of headaches with severe nausea begging for a suppository to help the nausea because I couldn’t keep anything down orally.
A little over a a year after my first baby was born I began having parts of my vision that would be gone with the migraines and I would have numbness in my right side extremities. I began to get quite concerned about these and made an appointment for another neurology work-up. That neurologist gave me a list of foods to exclude that could be potential triggers, told me I needed to go off of the birth control pill I was taking, and put me on Depakote twice a day. I found that I needed to avoid anything with an artificial sweetener in it, onions, most things that contain yeast, and limit any caffeine containing beverages. I went off my birth control and would later find out that my body did not self-regulate my hormones very well. Eventually I decided that I wasn’t so sure about the Depakote, I felt like I was not in control of my moods at all. I was no longer having migraines, but I continued to watch for dietary triggers and avoid taking artificial hormones. Soon after I was pregnant with my second baby.
Now fast forward about 13 years, while I was pretty healthy and wasn’t really having many headaches or migraines. Occasionally, I might have one but I could always trace it back to a dietary cause. Throughout that time I would have chronic allergy and sinus difficulties. I would also have significant struggles with my mental health. Ultimately I teeter the line between major depressive disorder and bipolar disorder with a significant amount of anxiety as well.
Over the last year, I have pretty much struggled constantly with my sinus troubles. I’ve had 2 sinus surgeries in 6 months time, mostly I blame the first ENT surgeon for being negligent in my post-op care. I’ve been on antibiotics continuously for the past 6 months, with the most recent 3 months being IV antibiotics through a PICC line at home. I had my PICC line removed last week and switched over to a hefty dose of Amoxicillin 3 times a day. Nearly all of the antibiotics have been managed by Infectious Disease, who plans to leave me on the oral Amoxicillin for a full year due to osteomyelitis of the jaw from the constant infection and negligent care by the 1st surgeon. My health has been a complicated mess that is keeping me from working or being able to adequately meet my families needs. In addition to the 2 sinus surgeries I also had to have a molar pulled because the infection had pooled around it, I’ve had pericarditis (that I thought was improved a couple months ago, but now the shortness of breath has me unable to finish a sentence without taking a breath), and I’ve fought large amounts of swelling in my legs/feet/hands. I’ve been having regular/daily headaches that sometimes cause nausea and light sensitivity. 2 weeks ago I became confused, unsteady, couldn’t stay awake (even falling asleep while eating), very short of breath, had double/very blurry vision, terribly bad increase in back pain, and became very swollen from retaining over 15 pounds of fluid in 1 week. Ultimately that episode landed me in the ER with an overnight stay to monitor and try to figure it all out with a new primary care doctor that is young, super knowledgeable and thorough, and also works closely with my sister who is also a nurse. So, I feel like it’s one more person (my sister) to advocate for my needs!
I have fired a few doctors along the way and felt extremely frustrated at how hard I’ve had to advocate for myself while fearing that I’m dying. As a nurse who also lives in a rural area it is absolutely appalling how I felt like I was out to sea by myself on a sinking ship, because way too many medical providers had dropped the ball! I’ve cried countless times in doctors offices pleading with them to help me, to be let down by most providers! I’ve had terrible bone and back pain that more than once I literally laid in bed a sobbing mess praying that I would be saved from my misery!
So, my new primary care that admitted me mentioned the idea of migraines and asked if I had any family history of them. I let her know that I had a history of migraines in the past that the neurologist who put me on Depakote felt like he put in remission nearly 14 years ago. She would have me follow up with my ENT due to concerning results with my CT scans in the ER. My actual surgeon happened to be out on medical leave, however, his partner that I saw also brought up the possibility of the headaches being of a migraine nature. We discussed my symptoms further and he felt very strongly that a referral to have a new neurological work up was needed. He is the reason I have joined here, he provided me with the site and also an article on vestibular migraines.
I feel like the new neurology work up as well as this support site provide me with hope. I’m scheduled to see neurology in 18 days and I have MRI’s of my spine ordered in 3 more days to evaluate for the possibility of osteomyelitis there. Really I just need everyone on the same team, my team, to help me get better and get my life back!