Out of curiosity for those of you with GCA, have your headaches always been temporal, which is the most common for GCA, or have they been elsewhere in your head? The reason I ask is that I started getting a really bad frontal headache on Jan. 19. My rheumy bumped my prednisone up to 20mg (I was taking 12 at the time) & it had no effect. My ESR didn't bump up significantly, so he didn't think it was GCA. Tried me on two different antibiotics, thinking I may have had a frontal sinus infection (I had just gotten over a bad cold), and it had no effect. I slipped on the ice on Dec. 22 & smacked my head really hard behind my ear on the left side, and went to the ER, but no skull fracture or bleed found in CT scan. Finally sent me to a neurologist to try & find out where the headache was coming from. During this time, besides having the non-stop frontal headache, I also developed a headache at the base of my skull. I was always best first thing in the morning, then both would get worse as the day progressed, and would get better when I went to bed. I wondered if I could have post-concussive syndrome--too many things going on to know which thing caused this. The neurologist thought the symptoms sounded like a cerebrospinal fluid leak and had me go to bed for 2 days to see if it would heal. It did no good. He then sent me in to have an epidural blood patch to see if that would seal it. All I got out of that was a sore back to0. At this point, I was over 2 months of this continual headache. I was so stressed out that I decided I needed a break from doctors. I started seeing my chiropractor because my neck felt out of joint too. My headaches gradually transitioned to the frontal one easing over time, but the occipital one has persisted, but not to the degree it was. Occasionally, the frontal one will come back, but only temporarily. The muscles in my neck were being affected too, with them being very tight clear up into the back of my skull, and I had knots between my neck and shoulders. I've continued with the chiropractic and started Bowen sessions (I've had 4). I've had a lot of relief with the muscles, but the base of skull headache still ebbs and flows & the muscle soreness fluctuates too. I've noticed a slight sensation in my scalp for a few months, not pain, but it feels "different" when I brush my hair. I still have this little niggling fear in my mind that I may have some kind of atypical GCA, but none of my doctors I mention this to think I do because of my blood values. I get really nervous each time I'm supposed to do a taper, and am trying to do it with the dead slow method this month to go from 8 to 7, just in case. I sound like a hot mess don't I?? Has anyone else ever had anything like this?
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