Can anyone describe….

[Bramble2000]

Hi, can anyone describe what a GCA headache feels like and also scalp plain please? Thanks

[PMRpro Ambassador]

My scalp pain felt as if my hair was lying wrong - but mine never developed to proper GCA. The headache is said to be like no other headache you have ever had,

[DorsetLady PMRGCAuk volunteer]

My scalp originally felt like a neuralgia pain….but increased in intensity as time went on, and trying to brush/comb/ wash hair was extremely painful.

As time went on and headaches came into play, it felt like two steel bands vertically around my head - starting at back of head ( each side of nape) up the back of my head, over the top and down my face in lines through my eyes to my jawline. Always put me in mind of a what a medieval torture devise probably looked like.

..and then came the jaw claudication - towards the end couldn’t even eat half a sandwich…..

[Bluey-1]

As my optometrist said, you’ve had the worst headache of your life. I’m my case pain all over, particularly at night. It did not respond to painkillers. Brushing my hair was slightly painful. I had bad jaw ache on eating, thought it was TMJ after seeing the dentist. I had started to have soup and avoid chewy things. This went on for a fortnight before I was diagnosed. I was quite weak by this point and felt in my bones that something was very wrong. I was lucky. Didn’t lose sight.

[piglette]

They say the worst headache imaginable.

[DorsetLady PMRGCAuk volunteer in reply to piglette]

Not wrong there!

[Toolie2]

Unlike others, I had very little pain and, apart from malaise and fatigue, my symptoms were very slight. For about a week I noticed that parts of my scalp felt like it used to when I was little and one of the strands of my plaits was too tight. I just thought 'that's curious' and it went away. My jaws hurt slightly when I opened my mouth very wide and that went away after a week or so.

Several weeks later, the malaise was much better, but I had a heavy, achey feeling in a line across my forehead. It was nothing compared with the headaches I used to have in my 20s. It wasn't bad enough for painkillers. This lasted for a couple of days when I noticed misty blobs in the vision of my left eye and my eye muscles and temple were tender. I went to Moorfields A&E and they suspected GCA and gave me steroids, but I lost most of the sight in that eye.

So please don't wait for extreme pain, it doesn't necessarily happen to everyone. In fact, I worry that I might not notice if I have a relapse!

[DorsetLady PMRGCAuk volunteer in reply to Toolie2]

That’s not a lot of good if you have a doctor who has gone off at a complete tangent with their diagnosis …and then attributes every symptoms to that- as mine did for 18 months. My head issues didn’t appears until the last couple of months before I ended up in A&E with sight loss.

[Bramble2000 in reply to DorsetLady]

I’m sorry 😞

[DorsetLady PMRGCAuk volunteer in reply to Bramble2000]

Thank you, it was a few years ago, and although devastating at the time, almost (but not quite) forgotten now…and life moves on…doesn’t stop me doing pretty much what I want.

[Toolie2 in reply to DorsetLady]

Hi DorsetLady, I agree we're dependent on doctors' knowledge and expertise. The situation you were in for so long sounds awful and it must have been hard to come to terms with losing your eye when it was so avoidable.

I just think people shouldn't be reassured because they don't have the terrible pain that you and most others have described, it could still be GCA. I didn't know about GCA at the time and I didn't connect these odd little symptoms that came and went over about 3 months.

[DorsetLady PMRGCAuk volunteer in reply to Toolie2]

I agree about how differently GCA may present itself -and there reports of people who had no “apparent “ symptoms but still ended up being complete blind… and as we know from comments from loved ones on this forum over the years, it still happens.

Like many at the beginning I had never heard of PMR let alone GCA.

However I (and others) answered the question posed -

Hi, can anyone describe what a GCA headache feels like and also scalp plain please?

[Josie-Anne in reply to Toolie2]

Hi Toolie2,

I keep having this and have been to the opticians and the eye clinic at the hospital and all they said was that it was posterior vitreous detachment, I’ve been complaining to my doctor about my bad headaches, blurred vision and blobs in front of my eyes that I’ve had on and off for about a year now and had bleeding at the back of both eyes but told it was the above. What actually is GCA

[DorsetLady PMRGCAuk volunteer in reply to Josie-Anne]

see this -

myacare.com/blog/what-is-gi...

Or this from PMRGCAUK charity website -

pmrgca.org.uk/information-a...

[Toolie2 in reply to Josie-Anne]

Hi Josie-Anne

I'm afraid I'm not competent to give you any answers, and I'm glad that DorsetLady has given you these links.

I can only relate my own experience. When I went to the eye hospital they could see that the optic nerve was swollen, the eye had slipped out of alignment and the pupil wasn't dilating, but first of all told me that my vision, which was getting worse, would clear up on its own. Then they did some blood tests looking for inflammation markers, one of which took an hour, and that showed that markers were raised and I was given a weeks supply of steroids. This was on a Saturday and they gave me another appointment on the Monday. There was still uncertainty about the diagnosis and the young doctor who had seen me said *Phew, thank goodness I gave you steroids!" Which I echo regularly and thank my lucky stars she did. A consultant came in and agreed with the actions she had taken and arranged a biopsy but no-one mentioned giant cell arteritis until I saw a rheumatologist later in the week. I think my lack of pain and really trivial symptoms made it difficult to diagnose and the inflammation markers were the deciding factor.

I do hope you get proper answers to your problems soon and you will soon feel better.

[Josie-Anne in reply to Toolie2]

Thank you I hope you get sorted too ☺️

[Phed]

My headaches were unbearable, 24 hours a day with no relief with pain killers, the scalp well I couldn’t even brush my hair as my scalp was so painful to touch, jaw ache on eating (left hand side only, car journeys unbearable as going over bumps in road really made the whole of my head hurt, 3 weeks and 7 doctors before finally being diagnosed with GCA.

[Sharitone]

Mine was just a bad headache that built up over 4 days, quite mild to start with, then suddenly getting bad - like a band right across my face just below the eyebrows. Also a very stiff neck and tingling cheeks. And nothing helped, not Tramadol, not even 40 mg of pred - it had to be 60mg. However, I never had any scalp difficulties or jaw claudication, so it seems to me that you can't rely on other people's descriptions: if you have PMR and a bad headache that doesn't respond to painkillers, or any visual problems, then you need to get it checked. Even if it's a false alarm. I hope you're not suffering?

[Janstr]

Mine was a low grade headache that just wouldn’t go away. After about a week of this I started getting jaw claudication & when I could no longer eat before lunchtime after 10 days, went to the dr with what I thought was a sinus infection. My scalp was tender, but not excruciating

[Susan1705]

As others a pain like no other and did not respond to pain relieve. At first I thought it was a headache following a Covid vaccine. It was like my head was in a vice and wearing glasses was painful. My face also hurt and I even went to the dentist because I thought I had an infection in my tooth, yet nothing on the xray. It got worse and then I started to get double vision in one eye (symptoms were worse on the left side). As I already had PMR my GP sent me straight to A and E and the admitted me and started treatment.

[Broseley]

I was like Janstr above. The headache was at the back of my head. It was worsened if I rested my head on a pillow or the back of the sofa. It was tolerable, pain wise, and paracetamol didn't help. It would wake me up in the night. It was unlike any headache I had ever had, though felt a bit like a tension headache. Then my jaw got stiff and I couldn't open my mouth wide enough to eat properly. It ached when I chewed. My neck also got stiff.

When the headache didn't get completely better after 3 weeks, hubby said to phone the doctor as any headache that doesn't go away when you're older needs looking into. I didn't know this.

The GP referred me to the emergency assessment centre as I was reluctant to take the 40mg pred she asked me to. She had already put me on 15mg for PMR and the jaw ache and neck pain disappeared but the headache was still there though much reduced. I was lucky. If you have these symptoms, don't delay.

[Sophiestree]

Tricky question as I think we are all different. I have LVV so similar in that my inflammation also goes to my head but I didn't have jaw issues and could brush my hair. I just felt like my head was in a vice the whole time and that I had a thumb pushing into my eyes. Never went away but varied on a pain score.Interestingly I remember mentioning it to a doctor on more than one occasion over the years but they were never interested. At least that's changed.

[Miacaro45]

DorsetLady is correct in her description. I cried for months before I was diagnosed. The pain from the headache and the jaw claudication was totally unbearable.

[Teekay2]

I used to call mine the “hat of pain”. Over several months visits to the GP produced two lots of antibiotics untill another GP recognised that something was going on wrote to my rheumatologist with her concerns and referred me to Neurology urgently where I was misdiagnosed and offered Gabapentin for nerve pain which I refused. I told the neurologist that I had night sweats and he said that it was critical that I informed my rheumatologist immediately. I did so and she went into overdrive,telephoning me,arranging several scans,Moorfields appointment all within a week. Immediate 60mgms pred and a biopsy.

She apologised for not spotting it earlier but there was no way she could have as I had not told her but gone to the GP not being aware of temporal arteritis.

[PMRpro Ambassador in reply to Teekay2]

Emphasises the need for comprehensive education of GPs ...

[Teekay2 in reply to PMRpro]

When I next saw the GP who alerted the rheumatologist she said that she would never have thought of temporal arteritis. But at least she recognised that action was needed and I am thankfull for that.

[MiniSpec]

The first time I had GCA I'd had PMR for nearly two years. I was tapering my Pred dose from 11mg to 10mg and suddenly noticed a bad headache on one side of my head. It was all along the top of my scalp as well as under the skin, and I couldn't touch it. Neither could I sleep, and painkillers didn't touch it at all. It was pretty much unbearable, and I had no idea what could be causing it.

Luckily I went to see the GP and he recognised it (thank goodness!) and put me on 60mg of Pred immediately. Within a day or so the pain had gone, and then I had the unenviable task of reducing my Pred back to pre GCA levels.

This took me a year and a half, and when I got down to 11mg I was understandably worried that it would reoccur. However, it didn't, so I thought I was safe to continue reducing. But as soon as I reduced from 10mg to 9mg the headache came back just as strongly as it had the first time around.

I went to see the GP again and this time he put me on 50mg of Pred straight away, and the headache receded once more. Since then I've worried myself witless about the possibility of it reoccurring again any time I reduce my dosage, but now I'm down to 2.5mg per day and from what I've read on here, I'm very unlikely to get GCA for a third time.

Anyway, the thing is that as blindness is the penalty for anyone ignoring the symptoms, I'd say get it checked out ASAP, and if you're not happy with the first diagnosis, get a second opinion. It's your eyesight that's on the line, not theirs, so you need to be absolutely sure that it's not GCA before accepting any other diagnosis.

[DorsetLady PMRGCAuk volunteer in reply to MiniSpec]

Anyway, the thing is that as blindness is the penalty for anyone ignoring the symptoms,

Not always an own goal though!

[MiniSpec in reply to DorsetLady]

The first time I had it, I ignored it for as long as I could, and I expected it to go away on its own. It was only after around a fortnight or more of the constant pain that I even considered going to see a doctor. So in my case it was me acting the way men normally do, and ignoring all the signs that put me in danger. After all, I'm a man, so I should be able to put up with a little pain and discomfort (famous last words!).

It's only afterwards that I began to realise that my reluctance to see a GP could have led to me losing my sight. So to a degree I was culpable. However, in your case you had a nightmare scenario of the professionals misdiagnosing your problem for 18 months before they realised they'd got it wrong, but by then it was too late, and you'd already lost the sight in one eye, despite you doing all the right things. It was their fault entirely that you lost your sight, and nothing to do with your own actions.

I wonder if you could have sued them for their incompetence? That would be a wake up call for them to get their a***es in gear and do some homework before dismissing your pain as something neurological.

[DorsetLady PMRGCAuk volunteer in reply to MiniSpec]

Sight loss in one eye is not considered to be a disability -and even if it was, I had already retired so no loss of earnings… but I’m sure “lessons were learned” by surgery….at least I hope so.🤦🏻‍♀️

[PMRpro Ambassador in reply to MiniSpec]

It wasn't a case of getting it for a third time - the GCA isn't cured by the pred and it hasn't gone away, just the inflammation is managed and when it flares up the existing inflammation just isn't being managed by the lowered dose. Eventually it does burn out and go away - and you get to a low dose and off pred.

[MiniSpec in reply to PMRpro]

PMRpro, I agree, it doesn't cure the GCA, but it does overcome the symptoms, and from what I've read on here, after having GCA flare up twice, I'm unlikely to get a flare up a third time, especially now that I'm on a low dose of Pred. However, I do still worry that it could raise its ugly head once more if it felt like it, so I am very careful about reducing my Pred dose.

[oscarandchloe]

I had slight tenderness in the left side of my head, a tender scalp and the weirdest pain and sensation in my teeth. It felt like tremendous pressure building up, eventually my teeth in my upper jaw actually went numb. I dosed myself with paracetamol/ibuprofen every 4 hours day and night for 4 weeks, but increasingly felt that something was very wrong and asked for an emergency appointment with doctor. I had mean time been seen buy a chiropractor as my neck was tight and stiff. I was seen by a new doctor to the practice who checked my neck and said she thought there was nothing wrong there, but she wanted some immediate blood tests for something sh she was 99% certain I didn't have. Two days later I was on 45 mg. Pred and 8 hours after the first dose I had no symptoms at all, and 4 years later they have never returned, I later developed PMR but am now down to 4mg Pred. The miracle of this is that she had been on a course enabling doctors to recognise GCA a few weeks before my appointment! I was given an appointment with the Oxford Rheumatology Dept and was seen 4 weeks later. For the next 18 months I had an ultrasound scan every 6 months, often with medical students watching and learning how to use the special scanning machine that looked for large cells in the neck and temple arteries. All in all, I've been very lucky and my heart goes out to all those posts here from people who have suffered undiagnosed for months and years, let alone those who lost sight.

[Bramble2000 in reply to oscarandchloe]

sounds awful but I’m glad you got the right attention for it. X