What are GCA headaches like?

[HealthCW]

Trying to get a diagnosis of something. Perhaps GCA? or TMJ? When you have headaches with GCA do they last for a bit or just fleeting? I'm getting stabs of head pain randomly and daily that come and go for a couple of seconds. Sometimes the pain is on the top back of my head, and now at the base of my skull. I definitely grind my teeth (now have a mouth guard) and have been very stressed. Initially my ESR was slightly elevated so they suggested possible GCA as I'm having temple pressure off and on and the random head pains. But my ENT says temple pressure can be TMJ. The TMJ symptoms seem to be very similar to GCA symptoms. This all started two weeks after covid shot.

[SnazzyD]

It seems to vary between people. Mine, I wouldn’t call headache but a feeling of acid burning under the skin, so not like a hurting brain as I feel with a normal headache. The burning was from the temple and over my skull mainly on the right side. At night my pillow felt like it was a concrete block, cold wind on my face hurt as did my glasses. Not agony but an irritating discomfort. In the last few hours before diagnosis I really felt on another planet and I do think I was in trouble with a feeling of, this is it, not because I was in dire pain, but my body saying something very bad was happening. I had also had pain at the base of my skull especially at night in the run up for a few weeks and a niggling pain in a line at the back of my neck. Massage was useless, perhaps because it was coming from an artery. My jaw pain was only present when I tried to chew. It wasn’t in the joint. It just felt like cramp in the muscles the more I chewed. I could still open my mouth ok, unlike with TMJ problems. It is a good idea to acquaint yourself with the sternokleidomastoid muscles because many a time I thought I was having a relapse when all it was, was tension here. It really mimics GCA all over the head and eyes and I found it actually more painful.

healthline.com/health/stern...

[SheffieldJane in reply to SnazzyD]

That is a really good description.Can I just ask? Recently I have had that burning sensation that feels like it is in the lining of my stomach. I feel that I have read recently that Vasculitis can produce this kind of sensation - prickling and burning just under the surface of my skin. Sometimes it migrates to other parts of my body.

My GCA headache was constant and nasty at the base of my skull often with stabbing pains in my temple. I do find your contributions helpful SnazzyD - always have!

[SnazzyD in reply to SheffieldJane]

Gosh I really don’t know. I’m pretty sure Pred still upset my stomach a bit just by being in my blood stream even though the acid reflux was resolved by enteric coated. Others on here have said the same as you. Interestingly with Covid and long Covid I had a burning which seemed to have nothing to do with the amount of acid problem. Before I was diagnosed I had had up years of reflux but once GCA was treated it has resolved even with Pred being what it was, so something was up that was not due to Pred and Pred helped even. Not much help I know, it’s so complex.

[SheffieldJane in reply to SnazzyD]

Thanks! I am better on Entric Coated too. Much better for my digestive system and the timings. I worry sometimes about absorption. I am on 9 mgs but Adrenals/wise it feels more like 5 mgs judging by my PMR experience. The tiredness is off the scale.

[supersayan in reply to SheffieldJane]

My symptoms started with a massive headache so bad I went right to bed. Woke up with left side facial numbness thought it was due to left eye inflammation. 2 weeks later still had numbness with brain freeze headaches went to dr.Who sent me to E R blood work and cat scan all good, Er dr and my family doctor think gca or micro stroke. Facial numbness is constant with brain freeze headaches 2 more rounds of blood work ok waiting for mri and neurological follow up.

[HealthCW in reply to SnazzyD]

Thanks for the link and info. I’ve just been feeling awful for a month.

[SnazzyD in reply to HealthCW]

Headaches for a month of any sort need proper advice really.

[HealthCW in reply to SnazzyD]

So I looked up the SCM pain and that seems to fit. I did the neck exercises and I have to say I’m feeling better. Thanks for that info because no one has said this! My ENT today said everything I have is TMJ. I’m still going to see rheumatologist.

[PMRpro Ambassador in reply to HealthCW]

Snazzy started it and I have joined her in advertising the SCM role in that sort of pain!! Unfortunately - it hasn't got to many doctors so far ...

[DorsetLady PMRGCAuk volunteer]

Not fleeting...,in my case.

Mine at their worse were like 2 steel vertical bands going up the back of my head, over the top and down the front through eyes.

Tender scalp was there all the time - and jaw claudication when eating.

No temple pains.

Others will have different versions.

Whatever it is, any new headaches do need further investigation.

[HealthCW in reply to DorsetLady]

I’ve been reading all kinds of posts here and that’s the sense I’m getting which makes diagnosis so hard. Have an appt with a rheumatologist but not for a couple of weeks. I also have sacroiliac pain which I’ve never had and all this random head feelings so hopefully will find out soon. Thanks for your input!

[DorsetLady PMRGCAuk volunteer in reply to HealthCW]

Not sure where you live, but obviously if it is GCA and you get any sight disturbances, then you must go to A&E or ER to get checked out.

[Janstr]

My headache was behind one eye & like a low grade migraine that wouldn’t go away.

[brambles22]

' I'm getting stabs of head pain randomly and daily that come and go for a couple of seconds 'That mirrors my experience.

I've got GCA.

My headaches were repetetive, sharp pains going down the side of my head, from the temple area. They were very painful. They would happen then stop, then come back again. I had difficulty sleeping. I'd drop off to sleep and be woken up by the headcahes. Over the counter painkillers were uselessin dealing with the pain.

Once I was put on steroids they stopped. I'm now down to 6mg of steroids after a year and gradually tapering down.

'Initially my ESR was slightly elevated'

My ESR levels were off the scale before I was diagnosed with GCA and put on steroids which was initially 60mg. The levels came down afterwards and are now normal. Any elevation of CRP or ESR is suggestive of giant cell arteritis in a patient with signs and symptoms, although, typically, in acute cases, levels are significantly elevated

[2013mayo]

Hi. Before I was diagnosed I had headaches everyday for several months, becoming worse and worse, painkillers didn’t do anything to stop the pain, I also developed severe mouth ulcers on one side of my tongue.

At it worst the headache felt like a very tight elastic band around the front of my head, I thought I was having a brain haemorrhage, ( I know, a bit dramatic) it really was that painful. Since starting pred the headaches disappeared. I’ve only had very minor ones since I’ve started to reduce pred, I’m now on 4mg, maybe not enough at the moment as I’m having a few difficulties with GCA / PMR.

Hope you get it sorted.

X

[RoadTrip]

Your stabs of pain for a couple of seconds throughout the day, I call spot pains, which I had on the top of my head. I have been having these frequently since diagnosed with GCA. I have been told by my rheumatologists , in my case, that they are side effects of Pred. They tend to occur when PRED levels are running low during the day and have stopped now at lower levels.

My initial headaches were pain at 4/10 and above reaching 12/10 at times (usually early morning). Pain was over the top of my head like an alice band. I also had sore scalp and a patch on the left hand side on the top of my head which just ached. I was on full dose paracetamol, ibuprofen and some codamol which was doing nothing for the pain. A few days previously I had sore jaw, teeth, and earache similar levels of pain to the headache. I just wanted the pain to stop PRED was such a relief.

All our symptoms seem different, the doctor I saw did not think I had GCA when I suggested it, as too young and pain in the wrong place, but he did a blood test and CRP and PV were very high so 70mg PRED prescribed.

[Kailacobweb]

According to a neurologist I saw there is a form of headache called ‘stabbing headache’

[Frewen1]

Diagnosed with GCA last August, I can't honestly say I've experienced any pain... A few months ago, and when it started I suppose, I had the occasional, random stab in the left temporal region, but nothing horrid - otherwise I just have a sort of general weird 'shroud' feeling over my head now and again, and permanent toxic-feeling, jelly limbs. But, I'm still on 30mg Pred, so perhaps the head pain thing will start up the lower I get? I just wonder why I'm being (so far) spared the awful pain people talk about...

[PMRpro Ambassador in reply to Frewen1]

Each of almost all of the so-called typical GCA symptoms is only found as the presenting symptom (the reason you go to the doctor) in about 40% of patients and some are seen in fewer than 20%. Doctors have a very stereotypical view of the PMR and/or GCA patient and an awful lot of us just don't fit it.

[RoadTrip in reply to Frewen1]

I wouldn’t worry, all of us are different, just be thankful you have not and I hope that you will not in the future.

[Frewen1 in reply to RoadTrip]

We’ll see, but thanks for that kindness

[RoadTrip in reply to Frewen1]

I have only had really bad headaches before diagnosis of GCA, had pressure headaches after a couple of months which may or may not have been a flare, but the pain was no where near as bad. I hope I never have those headaches again hence happy, with my slower and more cautious reduction than my rheumatologist’s would like. Have just had PMR flare at 9 mg but that’s a different story.

[Frewen1 in reply to RoadTrip]

Yes, I’m reducing at 5mg a fortnight, they want me to do 10mg every two weeks, and I’m also on methotrexate now, but I’d rather go slower as last time I got to 17.5 and had a double vision flare, straight back to 60mg. Such a bore. Take care

[RoadTrip in reply to Frewen1]

Hope your reduction goes well this time, I’m constantly on watch for eye problems, none so far apart from vitreous detachment which is not GCA related. Best wishes.

[Frewen1 in reply to RoadTrip]

You too x

[PMRpro Ambassador in reply to Frewen1]

Are you also on tocilizumab? You know, they might reduce at that rate if you were - but it is very unlikely that methotrexate would allow that sort of speed of reduction if it is GCA

[Frewen1 in reply to PMRpro]

Well it's definitely GCA, (left temporal, pan-aortic); no, I'm not on TCZ, have been told yesterday to keep on 17.5 methotrexate until further notice, and consultant (not mine, on loan) agreed with me I could reduce at 5mg per fortnight, not 10mg. !!

[PMRpro Ambassador in reply to Frewen1]

Just as well ...

[Telian]

Snazzy’s explanation and DL’s are how my GCA headache manifested itself. ‘A headache like no other’ is what I used to tell my doctors that no painkillers touched. I had loads of tests for possible TIA, angiogram - as I had jaw numbness,I didn’t have jaw claudication, jaw misalignment all negative results. It wasn’t a fleeting headache either- started lower grade then intensity was so bad I couldn’t lift my head up - it felt as if I was carrying a sand bag in my head. Couldn’t bear to lie on my pillow yet desperately needed to as felt so ill. I was being treated for migraines until my sight went - was fast tracked to Rheumatology and within 6 hours of high dose Prednisolone felt like a new woman and miraculously my sight returned. If you get any visual disturbance go straight to A&E.

[pammy_hyland]

Mine was definatly much worse after both my covid jabs at about 5-8 days in and I was really bad with both headache and stabbing pains and Nausea and I also have theorise in my head too ..xx