Sorry for this third post in a week!
For those of you with GCA where was the headache?
I am so hoping I’m worrying for nothing but headache coming on at night past two nights. Jaw aches and gum shield has made no difference. Temporal area very tender. Whole neck feels painful. I’m so tired despite sleeping 10 hours a night.
No sight problems.
Currently on 2mg pred (PMR diagnosed June 2020 now in remission I think). Due to have bloods (general and prompted by tiredness) on Wednesday.
Never apology for posting - especially if you think it’s GCA…
My headache - all over head and almost like neuralgia- tingly, and hurt when brushing/washing hair, but as it progressed like two tight bands going up from back of neck, over the top of head and down face vertically through eyes to throat… but not temples ironically. .. and there all the time. But not on Pred, and built up over time as GP had gone down a rabbit hole and [seeming] like me knew nothing about GCA.
Jaw only ached after chewing - but so severe I couldn’t eat more than half a sandwich before giving up.
Ditto DL
I used to wake with a general morning headache associated with a stiff neck that went by the time I got to work without any pills. It would sometimes wake me at night so ak put it down to my pillows but no change helped. My neck felt like it had a niggly muscle that no massage would help. Then scalp tenderness crept on. I wouldn’t say it was in the temples per se but on the side of my head. This spread and accelerated in intensity over 48 hours from being intermittent and only upset during hair brushing or cold. In the run up my voice kept catching; a frog in the throat and I had little cough like my throat was dry. After 48 hours the whole side of my head felt like the skin was on fire and not a headache in the brain. A vein came up over the end of my eyebrow. On the last day I was eating my lunch and my jaw muscle just cramped up because it just felt tired. By then I felt peculiar and not with it and all my pains were just one cloud all over and I couldn’t say it was just the temple but I was a bit away with the fairies by then. People do seem to vary though.
I forgot to say I also had pain at the base of my skull across the back in the mornings for weeks before.
That sounds like a perfect description of how my symptoms progressed, except that I didn't get a raised vein in the temple until a few days into treatment and I had visual disturbances . My head , scalp and base of my skull felt sort of numb but painful to touch. Like I was wearing a sort of hat of pain. And it all felt slightly tingly and hit like heat stroke or sunburn.
I felt like I had a one sided intense migraine but it was also slightly different to the usual.
My jaw and ear ached and because I already suffered with Trigeminal neuralgia I thought the pain and extra sensitivity was a flare up of that or a tooth problem so I'd been to the dentist and ruled that out prior to seeing the opthalmologist whom sent me for the ultrasound for GCA.
I'd forgotten the catching in my throat and occasional trouble talking or swallowing, but again this occasionally happens with Ehlers Danlos and Trigeminal neuralgia so I just assumed it was that.
It's why I say never make assumptions.
Just because you already have a condition that causes you similar symptoms doesn't mean it's always going to be that causing the problem.
Especially if those symptoms are getting worse or aren't responding to your usual treatment , that should be an alarm bell to have things checked asap, as you just don't know if it could be something else.
Always get it checked to be sure because otherwise it could be too late .
Hi,
I was diagnosed with GCA last month. My headache was diffuse; while head, and not particularly intense. But I had it 24/7 for a week. I also had facial pressure. Both felt similar to a sinus infection. Then I noticed my left temporal artery was puffy and tender and that’s when I hightailed it to the ER. I didn’t have any visual symptoms either at first.
Also, by the way, my ESR was normal and my C- reactive protein was only slightly above normal range. But a temporal artery biopsy was positive for GCA.
Please call your doctor immediately or get to the hospital. GCA is not something to play “wait and see” with, and you have some troubling symptoms, indeed.
As SnazzyD says we are all different.Mine was a headache on the top left hand side of my head like no other.It was constant and no amount of painkillers would touch it.The right side of my neck was very painful and I did not have full mobility in my neck from side to side.My scalp was very tender and just before starting steroids my jaw hurt both sides when eating.
It can be temporal or it can be occipital or it can be all over, And don't let anyone try to tell you it is "the wrong sort of headache" or in the wrong place which I have heard said about occipital headaches (that is the back of your head above your neck). GCA is very partial to locating there and is the cause of visual loss. Everyone is a bit different.
health.qld.gov.au/abios/asp....
DogAgilityObsessed
Just to add to PMRpro’s comments re occipital headaches -resulted in my sight loss -which is what sent me to A&E -unfortunately to late to save it… and very little notice apart from a couple of days of increasing blurriness in said eye.
Been thinking that my very tender scalp was because of the way my hair is parted incorrectly due to lying on pillow. Mostly at the crown area. Occiptal headaches at the muscles at base of head above the neck. Jaws ache randomly. Not during eating; not immediately after. I have a bite guard which needs adjusting. Had zolendronic infusion about a month ago and going to get my jaws checked out by dentist end of month. This was originally diagnosed as acute tmj/tmd. Ironically the jaws started up again the week after the infusion. In fact it's 2AM here in Nova Scotia. Neck and head are aching and jaws as well. About to rub some tiger balm on the base of skull and just took two tylenol xtra. Does GCA affect digestion, i.e. constipation or is that from the codeine? I'm extremely constipated..Had TA biopsy done last January, but was negative. Also ophthalmology said no signs of GCA at that time. Still I've always wondered, even moreso after reading these posts.
Hi,
GCA never affected my digestive systems.. think you’ll find that is down to codeine- very common side effect. Don’t think jaw is due to GCA either, definitely comes on with eating…
Thank you DL. I've been wanting to ask the forum, just in case. Glad I did.
It is more likely to be the codeine I think but LVV could affect the GI tract if the large vessel vasculitis is compromising blood flow to it. Your jaw pain is not at all typical of GCA - it is claudication and defined by occuring with jaw use and resolving when you stop using it.
You do need to address the constipation - you should have been told how to do that when prescribed it as prevention is better than cure. If you haven't a doctor to ask, discuss it with a pharmacist. Movicol or the like would be a good approach usually. It probably hasn't been helped by your back problems and I'm surprised the back team didn't emphasise it.
Thank you Pro. Relieved about the jaws and headaches. Good news is I have GP finally, who I see today. The constipation being addressed by the back people was 'Don't let yourself get constipated" which I have tried not to but OTC stool softeners and laxatives aren't helping. I now have some bleeding and a hemorrhoids. I was going to ER last night as feels blockage-ish but decided to wait until I see her today, who may just send me to the ER today. I can still pass gas.
I've tried the chewing gum test which does not bring on jaw pain, which is relieved by the Tylenol 3 I take for my back. It is daily, but random. By the way, the pillows are helping. I have 4. Thanks again.
I have LVV rather than GCA but my digestive system was definitely affected. Since treatment though and low carb diet I've gone the other way!
If you find yourself at a dead end after everyone has done their bit, it might be worth thinking about cranial osteopathy if you are able. I had a similar problem (well before GCA) and my jaw and neck were on the wonk and it affected all of my head. Probably due to teeth clenching at night, it was a background discomfort that I pushed to the back of my mind in my busy life. After keeping my mouth open wide for some dentistry it flared horribly and off I went and it was a game changer.
please do not apologise for needing advice in a cluster. This is how it is and the whole purpose of this forum. Any ANY unusual headache must be investigated. They seem to be as unique as we are. Push for attention, maybe in A&E and because of the “ pot luck” of who you see, go armed with all the information you have gleaned from here. Best wishes!
I didn't have much of a headache, just a heavy feeling across my forehead for a couple of days and tenderness around my left temple. The main symptom was gradual (over a few hours that is) loss of vision in my left eye.
The speed with which it can happen is frightening so please get it checked quickly.
No advice I'm afraid just sending big hug and hoping it's not GCA. Take care
How are you doing Carol? This is our little trio of starting pmr ....what 3 years ago now? I'm beginning to flare during a taper from 1mg so have gone up to 2! Sigh! Xx
Hi Blossom, Yes , our band of three !
Sorry to hear you're struggling with your taper and DOA is having a rough time lately.
It's so disappointing when you have to go back up on your Pred.
I'm on 1mg and intend to stay there until the New Year then start very slow taper.
I'm having problems with my hands/ wrists since I got down to 2mg. Rheumy convinced its OA but I keep reading posts on the forum where others experience PMR in hands/wrists.
She sent me for xray last week just waiting to hear if it shows OA
Unfortunately I've also developed retinopathy (most probably steroid induced) and Osteoporosis ( I was Osteopenia at Dexa in 2020)
I was lucky enough never to have had serious health issues and rarely saw a doctor until March 2020. Now I feel like I'm never away from hospital appts.🙈
Let's hope 2024 is the year all three of us can finally say we've fully recovered.🙏
As everyone here has commented, it sounds like our headaches are all different. In the beginning I had severe pain on top of my head that wouldn’t go away with painkillers. It wasn’t constant. Later after prednisone when I relapsed the headache was just a dull ache all day on my forehead.
As PMR says occipital at back base of skull is typical. The muscles there contain the artery carrying blood to the optic nerve. As muscles were cramped it must constrict the blood flow. I also had tender scalp too sensitive to touch and temporal swelling right side mainly. Headache top of head and pain 24/7. I massaged the muscles at the base of skull to improve blood flow so possibly why I didn't lose sight.
Thank you everyone. I asked the question because I didn’t think a base of skull headache was the ‘right ’place. But all your comments and other symptoms have persuaded me to go to A&E. so that is where I’m now waiting.
Wise decision- let’s hope you don’t have to wait too long - and it’s not GCA. But always best to check.. sure you’ll let us know how you get on… and fingers crossed…
Good!
Best wishes for a good outcome....and hugs xx
Bloods taken. So now we wait and see if they show any inflammation.
Not that that is 100% conclusive. Fingers cross they can work out what it is,
Please let us know how you get on. Best of luck
No sign of inflammation (CRP 6 I think they said). They will send a report to the Rheumy I saw earlier this year and said to go back immediately if I have any vision problems. So I’m happy albeit have a headache still and feel a bit of a fraud/time waster. But they assured me I’d done the right thing.
Yes you did….but do monitor things.
Yes, you absolutely did the right thing! So far so good, but be alert to any change in vision. I expect that can take many forms as well, but I had little misty blobs at first, that came and then cleared.
Good luck❤️
My headaches were on both my temples and top of my had, dull achy, very uncomfortable.
Hello. My headache was inside the front of my head, it I could never really call it a headache. It was more like pressure. If the temple and jaw symptoms have returned on 2mg it sounds like you might need to take a step back up. Your CRP test will show if there’s inflammation.
I had been in remission for PMR for almost a year when I had a three-week period with the worst headaches I have ever experienced. Went to the Emergency 4 times and reported my fear of having GCA (having had PMR), each time to be told I did not have it. I was eventually diagnosed with tension headache (surprisingly to me, as I am not the type who gets headaches normally). After about 6 weeks of seeming calm, I began to feel generally unwell - tiredness, low-grade fever, sensitive scalp, dry cough, a slight pain in front of my right ear. I had no jaw problems and no eye-related problems. Again I sought help: it transpired that my CRP was much too high and that I had pneumonia and a UTI. Was hospitalized and, after about a week, the duty doctor decided to bring in the rheumatologists again. In this connection , GCA was discovered (despite a lack of the usual symptoms). For 18 months, I was treated with Prednisolone (graduating down in dose) but my CRP kept fluctuating. About two weeks ago, I had a PET scan and it transpired that I have large-vessel vasculitis (GCA) mainly in the heart area and that I have developed an aortic tear (b-dissection). Fortunately, the last-mentioned seems to be "peaceful" and, having again been put on a high-dose of Prednisolone (40 mg), I am feeling good right now. Tomorrow, I shall see another rheumatologist to discuss treatment with a steroid-sparing drug (Actemra) alongside Prednisolone so that the latter may be more quickly reduced in dose.
So, it seems that GCA can be present in different ways in different people, quietly doing its damage. I wish you a correct diagnosis soon. All the best!
There is even a paper about confusing GCA and tension headaches. Given the risks - it would seem sensible to err on the safe side, especially in a patient with a history of PMR!
Was your CRP checked in those early visits?
Yes. It kept fluctuating but was always above the "normal" zone. Today my blood work shows a CPR of 5 (!). Tomorrow, I'll be talking to the rheumatologist about introducting the steroid-saving drug, Actemra.
In my case in my left temple, and a very odd / unusual pain just below skin. Neck painful also. Tests came back negative. U/s and Biopsy, but I still went on v high dose. My conclusion was that it was/is GCA or my dose at 4 mgs was far too low and sticking at it was v unwise, producing a very nasty flare. Everyone on the site extremely helpful and prompt. Now on a higher dose for the time being and symptoms abated.
So many people out there just like me! My headaches are very low key, but I get pain and tenderness randomly in scalp, sharp earache, discomfort in left upper molar, and a tickling sensation in the hairline around the biopsy area. Just gone from 40 to 30 pred so early days for me with this GCA PMR. All the best, DogAgility, and to all.
I'm afraid mine was very similar to yours - extremely stiff neck, and most of the actual head pain was across just above the eyes. Plus tingling from eyebrows down to upper jaw level.
Hi, I’d been having headaches for ages before being diagnosed , I thought it was just part of me, I also sometimes got a tingling feeling on side of my head, I was also having eye problems but no one ever said it was anything like GCA, this was only diagnosed purely by accident, I’d been on holiday and suddenly got a very large black spot in my eye vision , it was difficult to see out of it. I also felt ill.when I came back from Spain I went to emergency eye hospital and then it was diagnosed . It took ages before diagnosis, once I started taking pred the headaches stopped. Been under specialist now since 2017, also got PMR
I remember describing my headache as like an arrow through my head: quite focussed on the left side at the front above the temples (above the hairline), and below the ear half-way round to the nape at the back.
There seemed to be a more positional general ache, that dissipated as I got halfway along the corridor to the bathroom as I got out of bed. I had also had a tenderness on the left side of the head: I actually thought it was a bruise as I’d slightly bashed my head a while earlier … although I do remember thinking “I didn’t think that’s where I’d knocked it!”
Just to add to the mix! My GCA came on very suddenly when on holiday. At first a strange headache down the left side of my face followed by a tender scalp and a feeling of not being well. Had some relief with Paracetamol, then over 4 weeks, neck pain and pain in upper teeth so bad that I took painkillers every 4 hours night and day, eventually my teeth started going numb. I stuck it out, feeling progressively ill, got to an actual GP (this was pre- Covid days) on an emergency appointment. Meanwhile I'd tried treatment with a chiropractor who just clicked my neck and made me feel worse. Young GP had just been on a course about GCA/PMR symptoms, checked out neck then ordered Blood tests immediately. Called into surgery next day, CRP sky-high and immediately onto 50mg Pred, 12 hours later absolutely all symptoms gone and have never re-appeared 5 years later and after a following appearance of PMR. Now down to 3 mg. How lucky I was to be given that GP!
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