Question for those with GCA

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?

11 Replies

  • Wow you do have a lot going on you poor thing. I do have atypical GCA with normal bloods. My headaches were always initially burning in the temples, then progressed to pain and tenderness above and behind ears. Since Jan I have had sharp pains in the occipital area. This has taken 2 years to get a diagnosis, due to bloods and age. I was 47 when this started, and had already been suffering PMR for 18 months. I should add I also had tongue pain, jaw cramps and pulsatile tinnitus. I had to travel the country to see 2 of the top experts in GCA to get a diagnosis. Are you under the care if a Rheumatologist? My head pains have always been constant, when I wake their there, activity, stress and temperature does worsen the pains.

  • Hi SweetSue,

    I don't have GCA but another type of a Vasculitis called Behcets Syndrome. The reason I am replying to you is that I had a 2 year frontal headache. It never responded to painkillers but got better when I was on immunosupressants. I was finally diagnosed with migraine, I also have constant photophobia ( wore sunglasses all winter ) blurry vision and am very intolerant to noise. I don't know if any of your symptoms match and if migraine has ever been considered. Mine respond to Sumatriptan, might be worth trying a drug like that to see if it helps.

  • We haven't talked about migraines yet. If it is my body's reaction to Prednisone, it will be interesting to see what happens as I get through this month of tapering to 7mg. On the other hand, I get scared that if it is GCA, it will jump out as I do a taper. I figured trying the Bowen and the chiropractor were non-invasive and didn't require new drugs with new side effects, so trying that first. The nurse practitioner at my rheumy's office asked if anyone had talked about trying a Botox injection if it's muscle related in my neck. I feel like a human pinball getting bounced between doctors, each of which has his own theory. Wish they'd all get together!!

  • I hang around this forum as my presenting symptoms were very like PMR/GCA ( bilateral hip and shoulder pain, weight loss, fatigue then jaw claudication, headache and blurry vision ). I too responded fairly quickly to prednisolone. I think that high dose pred was definitely to blame for some of my vision issues, like you there is nothing wrong with my eyes. The headaches have been awful, very debilitating.

    I have had a long road to diagnosis ( average time to diagnose Bechets is 10 yrs ), as it has taken 3 yrs. If it has taught me anything it's that auto immune disease is very complex, there are lots of overlapping features between the vasculitidies and you need to keep pushing, asking questions and change specialists, if necessary, to get answers!

    You are totally right about the lack of multi disciplinary working, it drives me crazy as well.

  • Thanks for the info. I just looked up Bechets, as this is another new one to me. Luckily, I'm a bit pushy with my health, and if something isn't right, I'll keep searching for answers.

  • When I was first diagnosed with PMR in Sept. 2014 by a rheumatologist, 20 mg prednisone prescribed by my GP decreased the shoulder, arm, thigh, & groin pain I was having (no headache to start with), but wasn't getting nearly all of it. I saw a rheumatologist the next week and he gave me a steroid injection to give me a boost and had me call him in 3 days. It was better, but by the third day things were coming back again, so he upped me to 40 mg, which did the trick. The first of Nov. when I reduced to 30mg, I started getting just a hint of a frontal headache. Not really a headache, but kind of a nagging tension. At the same time, my eyes started doing goofy things--distance vision blurry and I felt like I couldn't focus correctly. No loss of vision, but my rheumy did send me to my ophthamologist who saw no problems with the optic nerve. (I had my eyes checked again in January just to be sure and they were still okay, except for my focus problems).Their best bet was that all this was my reaction to the high dose of prednisone. I have had episodes of what feels like TMJ, but it's just an aching all the time when it does it, not when I'm eating like claudication would do, and it only lasts a couple of days then goes away. It's all very confusing!

  • GCA headache doesn't have to be temporal - in fact GCA doesn't have to present with headache- it is well under half who present with headache as the primary symptom. It's the same with all the "typical" symptoms: some are the primary symptom in under 20% according to the literature. Trouble is, most doctors haven't read those papers!

    As Keyes says - there are other forms of vasculitis. Can you find a vasculitis specialist?

  • I'll have to do a little research, but I'm sure I can find one in town. Want to make sure I see a good one! :)

  • My Mother had GCA and no one recognised it. Her headache was at the top of her head and she said the pain was like being hit over the head with an axe. You could see markings on her head like a road way. Her Dr and another both looked together and had never seen anything like it. when she went to the hospital all different people filed into the cubicle to look. I by now had been looking on the internet and suggested it be GCA as she did have pmr as well. It was and they took photos to use in training now. Over 10 years later at Addenbrookes I am still being told it is in the temples, so no one has learn't from it.

  • That is interesting - someone on one of the forms mentioned a dent (for want of a better word) in their skull.

    Yes - temporal arteritis is a form of GCA or LVV (large vessel vasculitis) - but it DOES NOT MEAN THAT IS THE ONLY PLACE IT AFFECTS!!!!!!! If it is somewhere else the symptoms will be a bit different.

    If we as patients know that - why is it so darn difficult to persuade medics of the fact?

  • My pain was above and behind my ear on he RHSide, and my vision disturbance took the form of scinillating scotoma so initially I was diagnosed with silent migraine, as it wasn't really headache, just scalp pain. It took several weeks, and three blood test showing increasing ESR and CRP levels before a different GP finally had a lightbulb moment and sent me to the Urgent Eye Clinic who diagnosed GCA immediately, confirmed by biopsy that day.

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