When I was first diagnosed with the coccidiomycosis, I began experiencing spinal meningitis about every 6-8 weeks for a little over a year. It sucked! Until we figured out it was Recurring Herpes Viral Meningitis (aka Mollaret's Meningitis) and I got on a hefty daily dose of Acyclovir, I endured excruciating pain that sometimes made me want to die.
The pain would begin with the usual symptom of tightness in my neck. It felt like I had a pulled muscle, but without the muscle part involved - it was just hard to turn my head... it felt like I needed a chiropractic adjustment, but didn't dare do one for fear my neck would snap off.
And then the headache would start. In one of two places, the same spot on opposite sides of my head - and only on one side her episode. Looking at my head and making quadrants, the back rear quadrants were where the pain lived.
It would start as a typical headache (and I rarely get them, so these were extremely abnormal for me), but only be in that one spot. The headache lasted for at least two weeks at a time. No amount of medication helped and it was constant even while asleep. After a couple of episodes, I realized what was going to happen and began to prepare.
I'd already had a lumbar puncture - LP - (aka spinal tap) inbetween episodes that showed nothing and I never could think enough to go to the emergency room during one to have another LP done, but we are absolutely certain about what was going on. Once I was put on the Acyclovir prophylacticly, the headaches vanished. This was one time it didn't take a hard copy result to prove what was happening.
The headache began to be so painful I could sometimes not see straight. I hunched my shoulders, trying to keep my head on (physically), and I could barely think complete thoughts. I wanted to sleep all the time and the cocci fevers didn't help, either.
For a long time, I described the headache as if my skull had a crack in it and it was going to open and spill my brains onto the floor. I could actually draw a line where the "crack" was and it never changed places during the entire episode. I would hold my head in my hand, trying to keep the crack from opening; I needed my brains! Laying on the crack helped a lot when my hands were tired. I would push the pillows together to simulate my hands and that was how I was finally able to sleep.
I began thinking that my brains spilling onto the floor wasn't the nicest of images, so tried to come up with something better.
When Athena was born, she popped fully grown out of Zeus' head. He must have had one hell of a headache coming from that crack that opened to allow his daughter out.
So, I began calling my headaches "Athena" and now everyone around me knows that pain as such. When they would see me hunching and holding my head, they would ask, "Athena, mom?" and I would whisper, "Yes."
I know some people will think I am talking about a migraine. Migraines are all over my family, but I have never had one - still have not. This didn't have any of the symptoms of a migraine except exquisite pain in the head.
Since starting the Acyclovir, I have not had one episode of meningitis. At the first signs of Athena showing up, I increase my meds x 3 and, within 24-48 hours, she is gone again. I had to do this about four days ago - and yesterday, all symptoms disappeared.
Just thought y'all might want to know what spinal meningitis feels like.
Now if I could just get rid of the fevers, night sweats, ulcers, hair loss, blah, blah, blah.