Headaches

It all started with a cold that went into a sinus infection, which then became an ear infection. After a couple rounds of antibiotics, the ear and sinus infections were gone.

A short time later I developed horrible headaches, ones that lasted all day and night. The base of my skull even felt swollen and tender on the right side. My primary could not find anything wrong at all so I was sent to an ENT who at the time could not see anything, so a referral was sent to a neurologist. I remember sitting in the office thinking that I had some form of gut-wrenching migraines and that after a short visit and meds, I would carry on as usual. The neurologist prescribed me the medicine I had assumed and sent me on my way with instructions to return if the meds did not help after a couple of weeks.

The headaches were beyond intense!

On the new medicine, the headaches would dull for a very short time only to return with a vengeance. I truly felt as though I was going to lose my mind. They were becoming debilitating. I could not think, could not function, felt as though standing, even sitting would just bring more pain. I several times thought of how I wished I could fall asleep and not wake up if it meant that the headaches would stop. Light hurt, talking hurt, eating hurt, sound hurt, breathing seem to be painful. Fortunately, it was summer, so school was out, and I could just rest. My teenage daughters, mom, and I took refuge in our dark family room. They kept me company as I lay on the couch sleeping or watching TV. We binged television shows that we would have never watched before, Swamp People (my mom actually gave me a Swamp People birthday cake that summer), Dance Moms, every cooking show known to man, and several movie series.

The two weeks were over, and I felt worse than ever. Calling the neurologist, I was given an appointment for a follow-up and then an MRI. The doctor told me she had no idea what was going on but that if it was a tumor, I would immediately be sent to an oncologist. Worry and fear filled my heart as I awaited the results of the MRI. Did I have a brain tumor? What would happen if I did?

Fortunately, it was not a brain tumor, but a full-blown mastoid infection. My ear infection had not healed but had gone into my right mastoid. This was why my skull felt swollen and painful. My mind immediately went to the mastoid surgery my sister had her senior year of high school, the large stitches across the back of her skull, and how she had lost most of the hearing in her right ear. Mastoid infections are rare, so how was it that sisters could both get one?! I was sent back to the ENT who shook his head and began ordering rounds of antibiotics. My next couple of months were spent having tests with both the ENT and Neurologists, visits to my primary in between.

The final round of antibiotics was prescribed with the warning that if these did not finish clearing up the infection, surgery would be scheduled to remove the mastoid gland. My mom, family, friends, and church all prayed fervently that the meds would work. Finally, the infection cleared. I had lost part of my hearing in the right ear and would now forever have issues with it draining, but no mastoid surgery.

This infection however was not the end of tests and doctors, as I began having other issues. Body pain, fatigue, raised itchy rashes on my hands and feet, red rashes across my chest and face, and I simply could not shake respiratory and urinary infections. I still got headaches, just not the same intense ones from before. I explained to my primary that I had gotten the itchy rashes for many years, since before I had children. My primary asked me if anyone in my family was autoimmune. Not being able to think of anyone, my primary ordered a round of bloodwork to see if in fact I might be autoimmune. Of course, the bloodwork came back showing some sort of result that she believed confirmed my autoimmunity. My next visit was a rheumatologist and much more bloodwork.

In the end, the rheumatologist would come back with a diagnosis of something the subsequent infections had triggered. Something that had been dormant until the infections "woke it up."

I have what?!