temporal arteritis or vasculitis

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Melissa D.
Regular Member

Date Joined Aug 2008
Total Posts : 451
   Posted 12/31/2013 3:58 AM (GMT -6)   
I've had lupus for 17 years, been having headaches and migraines for as long as I can remember, even as a child, but I've never experienced these symptoms. Wondering if anyone here has experienced any of the sypmtom/experiences I've listed below?
It's been a tough week and I'm very confused and in a immense pain. about a week ago I started feeling very unwell, and while I said I didn't feel well I could not put my finger on what was wrong. i was so extremely fatigued that I just wanted to sleep for hours and days at a time. I have had no appetite and actually lost 3 lbs over Christmas. I've had a nagging headache, it's not a migraine nor my typical lupus headaches, it is like someone has taken a knife and stabbed me above my right temple, the pain radiates behind my right eye. And at times the right side of my face from my cheek to my ear go numb, there are times my right arm goes numb as well. And during this I get the strangest intense pain in an artery/vein running up the right side of my neck and the artery/vein is bulging out big time on my forehead over to my right temple.
The pain got so severe yesterday that I contacted my rheumy who told me to get the ER for assessment and to have images of my brain taken. I went and they didn't really take me serious I feel. They NP/PA took some labs, had a ct done w/o contrast. When the results came in he kind of laughed and said "your sed rate is 2, the ct is fine, so it's not temporal arteritis if that's what you're thinking. It's just a bad headache!" While I'm truly grateful it does not appear to be temporal arteritis (which I'd never heard of before then) the doctor had no explanation of why I had the symptoms I am having and offered no caring to find out what it was, he just wanted me gone so they could have the room because the flu is going around really bad and they ER was packed. I feel as though I wasted 4 hrs of my time and got no where, pain is still here, veins still bulged out and I just feel terrible.

Mother of 2 beautiful adult children and one amazing daughter in law, lupus SLE since 1997, sjorgrens, raynauds. My worst nightmare was imagined when my son was diagnosed with RA and lupus SLE while in college. I take a slew of meds to many to mention, am on Benlysta infusions. I try to live each day with a positive outlook and count my blessings.

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 12/31/2013 10:45 PM (GMT -6)   
I would tell my doctor what happened and see what he thinks needs to be done.
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))
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