Please! Let's compare headache notes ! At the onset of GCA, where was the pain, and how severe was it?

[Blurry62]

As I've shared in the past, muy rheumatologist has started repeatedly that, "GCA headaches are in one temple only." He gets a "deer in the headlights" look and shuts me down when I remind him about my headache presentation. " The whole scalp hurt horribly. It was as if I wore a winter cap -of pain- and after three days it stopped completely." I'd also like to know if headaches are still part of your picture during treatment/remission and, if so, how has their nature changed or not changed. I'm eager to hear your experiences. I still have them a year later and they're always shifting in location and intensity. I'll be so thankful to talk to the specialist.

[HeronNS]

I don't have GCA but to comment on your rheumatologist's statement about one-sided headache only: I think it's common, not essential, to have a one-sided headache with migraine, certainly that's how mine have been over the years. Or at least the pain is much worse on one side. The worst ones I used to describe as someone scraping out the side of my head with a spoon. Interestingly, the descriptions I just read online say a GCA headache presents as one-sided or at the back of the head. On the other hand:

ncbi.nlm.nih.gov/pmc/articl...

Which indicates that accepting only pain on one side of the temple as a diagnostic tool for GCA is inadequate.

[Hidden in reply to HeronNS]

Certainly someone is walking in the dark with this! It's not their personal experience is it!

[DorsetLady PMRGCAuk volunteer]

My experience -

Pain started in nape of neck progressing up and over head in vertical and almost parallel lines, coming over top of head and down front of face to jaw - in line with eyes. Excruciating painful! Felt like two steel bands - very Spanish Inquisition like!

Also scalp (all over) tender to touch - very painful to wash/brush hair.

Strangely enough, temples not painful nor temporal artery enlarged.

If he’d been my Rheumy I’d have sued him after I actually lost sight!

You need to see (sorry no pun intended) someone a bit more open minded.

After about the first few weeks on Pred no further headaches - at all!

But as we’re always saying - we are not all the same.

[pinks33]

I have GCA, diagnosed about six months ago. I never had pain in the temples, nor jaw pain when eating, nor tender scalp. I'm not normally a headache person, but I remember it all started with waking up with a headache across the forehead and top of scalp. AT first it disappeared on its own during the day, then only with one or two painkillers, and then I needed more painkillers. The worrying thing was it came back every day. Then the pain moved to the back of my scalp and my ears, a stabbing pain that lingered in one spot before moving on to another. My GP thought it was probably a tension headache, but thankfully ordered the blood test for inflammatories. My rheumy says my symptoms were unusual. I haven't had any real headache since starting steroids. I occasionally have light flickers of pain, more noticeable after a pred reduction, but otherwise more of a whisper than a scream. I agree it is worrying that a GP might rule out GCA unless there is pain in the temples.

[Marijo1951]

My main pain area was my right temple. My biopsy was from this area and was positive. However I also had pain in other areas especially at the back, which made it difficult to lie on my back, plus I had a sort of painful sensitivity right on top of my head which at its worst meant I couldn't wear a very lightweight woolly hat. But it did really move and vary in intensity all the time. After I started taking pred, I had two major flare ups of GCA when I was trying to reduce to 25 mg per day. Methotrexate has stopped me having any further major flares, although I have occasionally had very mild symptoms that haven't developed into anything worse. For example yesterday I again had the tenderness at the top of my head and wondered whether I needed to dash to A&E, but it stopped pretty quickly.

[Cally55]

I presented with pain only on the apex of head and fortunately GP, now retired, recognised it, ordered instant blood tests and prescribed 40 mg pred straight away. Inflammatory markers were high and the next day whilst looking at the packet of pred and thinking I suppose I ought to take it vision in right eye disappeared for a minute or two.

Other signs discovered with hindsight were weight loss, about 2 stone over a year or so, and what I think was claudication of right leg, and painful tongue and chewing.

Things went downhill after that with hospital unable to arrange biopsy or an urgent appointment.

Two months later when I did see rheumy got the same headache in wrong place story.

Only managed to get diagnosed by seeing top rheumatologist privately. By then hospital rheumy had gone and the whole thing started again with the new one!

She sent me to another top specialist, on NHS this time who also said I had definitely had GCA but current apex headache wasn't!!

I always ask these doctors what else it could be and none can suggest anything else. I was referred to prof of neurology who also said GCA was a strong possibility!

It is our bad luck to have an unusual presentation of an unusual disease.

[Jackoh]

My headaches with GCA were just on one side. The way that I would describe them was like a hot rod boring into the side of my head. I also had headaches or rather pain at the base of my skull.

My GP dismissed these as she said they weren’t in the temporal region and therefore it wasn’t GCA or temporal Arteritis. I therefore self referred to a private Consultant Rheumatologist who I now see under the NHS. He diagnosed cranial GCA.

I haven’t had the same headaches again but I do get earache and swollen glands on the same side sometimes as I’m reducing.

[fmkkm]

Hi Blurry,

Before prednisone, ache at the base of my skull, constant headache across my whole forehead that nothing could relieve, very tender scalp all over, jaw pain one side, sinus pain one side, enlarged temporal arteries both sides, chills all over, and I just felt “crappy”!! After prednisone my flares are only on one side.

[PMRpro Ambassador]

He really is unbelievably ignorant!!! Scalp pain is very common and GCA has a predilection for affecting the blood flow in the back of the head, the occipital region, and causing an occipital headache. Some people have tender temples on both sides - to say it is always one-sided is tripe. The temporal artery is not always affected - if it isn't affected it probably won't be sore.

I'm really fed up with hearing about so-called experts who claim patients are "atypical" or "unusual" or the like - it is very unlikely that any one patient shows all the signs and symptoms listed and I think they would be surprised how many other patients have similar problems. They don't see many patients - even rheumies. Most of those symptoms are found at presentation in 40% of patients at most, most of them in far fewer, although they do appear at some point in more.

emedicine.medscape.com/arti...

I only have a diagnosis of PMR although it is agreed I almost certainly have large vessel vasculitis and possibly had GCA - I had jaw claudication and thigh claudication which was actually the first thing that sent me to a doctor, until then it was just stiff shoulders, I couldn't sleep with my arms above my head. According to the article they are both very rare.

[piglette]

I wonder where they get this information from. As others say it is WRONG!

[Mikb]

For at least three months before diagnosis, I had a constant headache. Some days the headaches were severe enough to keep me from working. I went to a walk in clinic where I was diagnosed with a sinus infection and given medication, which didn't touch it. My scalp was so painful I got my shoulder length hair cut really really short, as even my hair seemed to hurt. My jaw hurt when eating, which was misdiagnosed as TMJ. It wasn't until there was eye involvement that I was diagnosed with GCA.

[pinks33]

I really sympathise with all those who have posted here. For many medics, GCA doesn't even seem to be on their radar. For others, it's not GCA unless the symptoms fit a standard profile. Shocking and alarming. I had never heard of GCA before diagnosis, and because I didn't have temporal pains a google search of my symptoms didn't alert me to it.

[chanel2]

I had constant headaches in both temples. I woke up with the headache and had it until I went to sleep at night. Also scalp hurt in back of head. In 24 hours after take 60mg of Pred headache was completely gone.

[Judyliz]

I experienced waves of discomfort moving from the nape of my neck over to my forehead. They were not painful but enough to stop me doing what ever I was involved in. They happened at least 5/6 times each hour for about 1 month.

I had mild pain in and around each ear but worse in the left.

The worst pain was my scalp, and that was PAIN.

I could not go outside because if the wind even slightly lifted my hair it was dreadful. The feel of the water droplets on my scalp when having a shower became unbearable and there was no way I could brush or dry my hair. I could not wear a hat.

Some of you might remember those very old fashioned thick tight swimming hats we had to wear in the 50's and early 60's, they were incredibly difficult to get on and off and really crushed our heads my head ache progressed to that sort of feeling only even tighter and like a vice around my head.

I started to get pain and tinnitus in my left ear.

I lost weight.

I had a mild fever.

What eventually drove me to A&E was a pulsing and swollen very blue left temporal artery and pain in my left carotid artery. Needless to say when I arrived there this had settled down.

None of my symptoms were there all the time other than the scalp tenderness and that varied in intensity.

I didn't have eye involvement.

I have had a number of flares since treatment began and they have always started with scalp pain.

Hope that is helpful.

It goes to show how different the presentation can be.

[Blurry62 in reply to Judyliz]

I want to say thank you to everyone for sharing their headache stories. The prevalence of Such massive misinformation asking medical professionals is appalling. Your experiences empowered me today. I had a meeting with my internal medicine doctor/GP today. He Got a passionate

Report about the myriad of GCA presentations and taper schedules. I told him about duration of treatments, and the symptoms of our flares... and he listened. He LISTENED ! I carried in a stack of medical documents to back us all up, and he got an education. He was able to receive what I was I saying. He didn't shut me down.

I now have a referral to a Vasculitis clinic, three hours from my home, with a physician who specializes in GCA and is associated with the Vasculitis Foundation

I'm very pleased. I'm very hopeful. Thank you my friends!!!

[Blurry62 in reply to Blurry62]

PS . He did A care override on my rheumatologist and upped my pred. He doesn't think its reasonable to live with headaches, ask the time. Yeah!!!

[Blurry62 in reply to Blurry62]

All the time.... Sorry for the errors.... I'm Blurry after all....

Gotta keep smiling

[Ciar]

Thank you for posting this question! I’ve had PMR for over 2 years, and get a lot of headaches, so GCA is always on my radar. I had terrible migraines for 2 decades, but they mostly disappeared with menopause. At the same time I came down with PMR my migraines came back with a vengeance. They were different in that they had a strong nape of neck component that was new. They can last 3 days, are frequent, but they are not permanent. I guess transience is the feature that tells me I don’t have GCA. I don’t have a lot of faith in my doctor to diagnose GCA. It sounds like most people have very individual symptoms with GCA.

[Janstr]

I had had undiagnosed PMR for 10 months & had pain in my thighs, lower back, calves, neck, shoulders & upper arms; I couldn't turn over in bed & was sleeping sitting up to make it easier & quicker to get out of bed. Then I got a headache behind one eye that I thought was a low grade migraine. ( on Christmas Eve if all nights.) This however didn't go away, & I went to the dr over 2 weeks later when I also had jaw claudication & tender scalp. He immediately put me onto the wonderful pred, & the next day very much raised blood inflammation markers & relief from the pred supported his PMR & GCA diagnosis. I later had a negative temporal artery bioposy. So my GCA headache seems different to others on this forum in that it was I call a low grade headache that just wouldn't go away. It's now been a year since diagnosis & I haven't had a repeat of the headache.

[dartmoorlass]

My head pain experience was identical to DorsetLady's including its almost immediate disappearance following introduction of preds.

[karools16]

I was working as a live-in carer. Woke up 1 night with the most excruciating pain, all over my head. I took 2 Paracetamol, but when I tried to lie down, my head felt as if it was being chopped open. Went to dr, next day. Didn't know what it was, but said my BP was 200 over almost the same, and wanted me in hospital. I refused, as I was going home, to S.Africa, 3 weeks later, and knew hospital wouldn't discharge me. He gave me a strict list of the Pred I had to take, and to see a Neuro upon my return , I put on 3 stone in 3 weeks. Upon my return, saw a Neuro , who diagnosed GCA. In 2017, at 2mg Pred, he handed me over to my GP, and sent me for a Synacthen test, which showed Addison's Disease, despite having NO fatigue. I haven't had any headaches, and only slight tenderness of scalp, at times.ps I also had jaw claudication at the time of diagnosis. I am on 7mg Pred at present.