I have been suffering from symptoms over the last few weeks and I am struggling to get any progress with hospitals. I am 26 years old and I have never had any issues with headaches in my life.
As a bit of background I have probably just had the most stressful year of my life and one of my aunties does have early onset rheumatoid arthritis.
While this all started 2 weeks ago looking back over the last 6/7 months I have lost about 10kg and had stiffness in my neck and shoulders develop to the point that I find it difficult to get comfortable in bed and I have to adjust quite regularly at my desk or when sitting down for long periods.
Timeline:
2 weeks ago (20th May) I started experienced headaches in my left temple, they were really confined to that area but I noticed that it was sore to the touch. I had assumed I must have banged my head and thought nothing of it.
The headaches continued every day coming and going intermittently but the pain wasn’t that bad to cause alarm.
26th May I go on holiday and fly to Italy. I don’t notice any issues in plane other than the odd twinge.
28th May. The headache has worsened and I start having jaw pain that isn’t localised but hurts when I walk. It’s more like throbbing all over. I struggle to sleep and the pain gets so bad I go to a hospital at 3am in Italy. They examine me and say I should go home early and see doctor in the uk. They give me a shot of Ketorolac (a strong nsaid) and my symptoms don’t improve immediately but by 6/7am I am able to fall asleep.
29th May: The next day I wake up at 11am and the pain is immediate. Both a headache and jaw pain. It actually hasn’t gone away since then and it has been constant.
I arrange for an earlier flight and travel back to the UK, while on the flight the air pressure changes are so bad that I spend most of the flight crying and in tears.
29th May: I get to A&E and go through triage and I explain the symptoms I am experiencing by this time I have also noticed I have some scalp sensitivity on the front of my hairline but nowhere else.
While waiting in A&E I start to experience eye pain that feels like needles behind the eyes or if someone was pulling on the back of them. Sometimes this comes like a throb or as a blood flow but it’s also intermittent.
After the initial consultation I get bloods taken. When I see doctor again there are several doctors there and one of them explains that my ESR is elevated and they were going to do an ultrasound of my temples.
I am able to explain where the pain is as it is very acute and concentrated on what I believe are the arteritis in my temple.
After the scan the doctor gives me some steroids and says I need to see the day time clinic the next morning.
I take the steroids and wait until the next morning while I am waiting the majority of my symptoms improve and the only real sticking point is the pain when touching my temple.
When I see the next doctor he does an exam and says that I don’t have the symptoms it’s probably something else because I’m too young so to go home and wait two weeks to see if it gets better.
30th May: I leave a&e and travel back home, I notice that my symptoms have mostly gone away and I arrange a optician appointment because I was worried about the eye pain.
At the opticians they explain that one of my eyes needs a strong prescription (which has changed since my last eye test in Sept 21) and it could be contributing to the headaches.
I find this slightly reassuring as she also says she can’t see any inflammation or damage on the optical camera scan.
I go home and go to bed but I am feeling slightly weird which I assume is due to the steroids.
31st May: I wake up about 4am and notice that my right eye has lost its long sightedness compared to the left and I’m not able to read my phone in bed without it being uncomfortable. While this might not be related I’ve previously never needed glasses for reading and I’ve never noticed a different between my eyes before.
I’ve also noticed that the headache is a lot more bilateral but I don’t have much soreness on right temple only in 1 or two areas but it isn’t as constant.
Because the headaches have stared again and due to the eye changes I go to a&e again. Long story short my bloods are still elevated (ESR 22, CRP 11) and the doctor does a CT scan. They say the results of the CT scan shows inflammation in my left sinus and he believes it’s just sinusitis and I should go home and it will go away in a few weeks.
After leaving the hospital nothing changes but I start taking cocodamol to help with the pain. I have 60mg of codine and it doesn’t do anything to really help.
1st June That evening I struggle to sleep and I noticed that my jaw pain is a lot more specific to when I move it. It doesn’t cause pain just from the initial movement but as I continue it’s like a build up in my muscles on side of face and it triggers the pain elsewhere in temples. I test this a few times by pretending to chew to make sure I’m not imagining it.
I also notice that in low light levels my left eye has a blackened spot in the middle which feels like it is a shade over my eye, it reduces the colour and brightness and as I alternate my eyes I can clearly see a difference. This isn’t permanent and it goes away but I notice it twice that day.
2nd June: At 1am I call 111 and they refer me to an out of hours gp.
At 9am The gp calls me back and says he will make an appointment at a&e for scans and blood tests.
I arrive at 10:30am and see the doctor. I explain everything to him and he says:
I have sinusitis causing headaches, I have an incorrect prescription causing eye pain and I have TMJ causing the jaw pain. He prescribes me Naproxen and says that will help.
I ask what am I supposed to do because the symptoms keep getting worse and I keep coming back and being sent away. He says to wait two more days.
I took the naproxen yesterday and I have to say was amazing for the first 8 hours, it took about 90 minutes to kick in but I felt no headache or jaw pain. I was smiling and went to the park with family. However it started to fade off before I took my second does last night.
3rd June: I’ve woken up and I can feel all the pain again but less than it has been previously however the pain in my eyes is a lot more often and it feels a lot more like needles or sharp shooting pains.
I am going to take my pain killers today again but I’m worried that I can’t wait two more days to see a GP on Monday and I’m really confused at why I haven’t been referred to a rheumatologist yet.
I found several nhs guidelines online that say referrals for suspected GCA should be sent to a rheumatologist within 24 hours and I’ve spoke to 4 doctors over the last week who keep telling me to ignore it.
I’d appreciate any advice, I live in Manchester if that helps in case people know any private doctors that could help.
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Capybara95
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What dose of prednisolone did they prescribe that made you feel better Capybara. What you describe sounds like textbook GCA. Your neck muscles especially at the side and back will be very contracted and locked. The blood flow to the optic nerve and temples flows through these via the arteries and although very painful they can be massaged to assist the release of pressure which constricts the flow. I did this for months not realising what I had. Your description and time line is very thorough and despite your age the medics should take you seriously. Age has nothing to do with it the bell curve of likeliness is there to demonstrate there are exceptions at the extreme. I'm sorry you are suffering. Get to A&E now and insist they take you seriously. You could lose sight and that won't recover. Read my profile if you want to know where this leads untreated. Very good luck and condolences for joining the club none want to be in.
I’m not too sure of the MG but it was a couple of pills, I think two of the steroids and some others to counteract the side effects.
Did you have any protruding arteries in the temples I feel as though I can feel a slight lump on my left side where I can also feel pain but the doctor have said nothing is really that visible.
I’m really skeptical of the sinusitis diagnosis because I don’t have any pain on the front of my forehead or behind the nose and none of the headache feels like it is from pressure, especially the pain in the eyes. I can also breath through both nostrils and haven’t had any mucus or streaming.
I just don’t see how the doctor thinks these unrelated 3 issues have suddenly happened at the same time to cause the symptoms when there is a single disease with all of them. What seems more unlikely?
Also regarding the TMJ for jaw I don’t have any pain in the bone or jaw it’s just muscles when I move. I also can’t hear or feel any clicking or mechanical problems.
I’ve also had eye strain before and that felt a lot more like sore eyelids and muscles around the eye rather than stabbing pains in the back. It was also concentrated on one eye rather than both.
Do you think I’d get away with another 48 hours to Monday, are there any particular signs I should look out for regarding the vision loss?
I was thinking of getting some aspirin and hoping the NSAID will stop any serious side effects until I can speak to my own GP on Monday.
I feel like I’m being gaslighted at the hospital and I don’t think I can go through talking to another doctor and not being listened to but I also don’t know how I might be able to make a rheumatologist appointment without going to A&E again.
I had swelling on the side of the head/temple. I have also lost some hearing in my right ear. I can't really describe how bad the pain was for 18hrs non stop. crying doesn't describe it properly. Nothing relieved it for days on end .
Also I don’t know if the lack of response from doctors is from my blood results as they are showing some inflammation but it isn’t very high, do you think the ketorolac injection might have reduced the results?
I don’t know whether I should stop taking the NSAIDs before getting bloods at gp on Monday in case they reduce the levels?
I think some guidelines say GCA should have figure if at least 15..
If I stop taking them how long do they have to be out of my system for?
If you live in Manchester why have you not gone to the emergency eye clinic at the eye hospital? That would be perfectly reasonable given the eye pain and they are also good at GCA-related symptoms.
Unlike cycli I don't agree that what you describe is textbook GCA - GCA jaw pain is rarely constant as you describe but claudication-type pain that occurs during use, chewing or even talking may do it, and then goes away when the action stops. Nor do ordinary pain-killers have an effect. GCA also rarely causes eye pain - its effect is usually on the optic nerve, well away from the eye itself. I'm not saying it doesn't - I'm saying it is very rare.
The same applies to age - yes, it is possible for younger people to develop GCA but there are other conditions with similar symptoms that are more likely, Takayasu's arteritis is the one most like GCA. But GPs are general practitioners so are less aware of the rare manifestations of anything,
I would try the eye clinic - it is open all day, 7 days a week.
I would say the jaw pain started off constant but the last 2 days it has only been when I chew or move jaw. I couldn’t finish my breakfast yesterday and I noticed I was reaching for more painkillers during dinner the day before.
It’s reassuring that GCA usually doesn’t respond to usual painkillers, I was thinking that yesterday that it was a good sign but I’m a bit worried this morning now the pain has come back, I’ve just taken more cocodamol and naproxen and I’m hoping it will go away again but the eye hospital is a good idea because the pain behind eyes has become more regular since I saw the optometrist.
Regarding the jaw pain would it hurt when you bite down hard, it sort of feels like a rush across my face when I bite down, again not the bones or tooth ache but across the muscles, when I was testing it it got worse as I continued to chew until it started triggering pain in my headache. I don’t really get any shooting pains when I open wide it’s more just discomfort. Apologies I’m struggling to specify whether it’s claudication, I hadn’t heard of the word until last week. It just feels really unusual and it’s not like any toothache I’ve had in the past and it’s not localised either. Any lasting pain after chewing is more on sides of face by cheeks.
No - the jaw pain in GCA is due to the muscles not getting enough blood supply and so oxygen to cope with the extra demands of repeated activity as in chewing - not something that is worse like biting onto a sore tooth. You can elicit GCA pain by chewing gum for 2 to 3 minutes - not biting onto anything there.
But as we say - you can describe the symptoms here all day and we couldn't make a diagnosis or do anything. If you are worried about your eyes, for whatever reason, whether it is visual effects or pain, then you need to go to the eye clinic and sooner rather than later. It is a very difficult situation - for anyone. GPs often don't see even a typical case of GCA in an entire career, when faced with something really unusual they may easily miss it. Their job is to triage and refer patients to the most appropriate agency. You have a long weekend - the emergency service is the most appropriate at present.
I hope you don't have it and wish you luck. Getting an answer is key to putting the mind at rest, but it needs to be the right answer not someone fobbing you off because you are too young.
Dear PMRpro. " GCA also rarely causes eye pain - its effect is usually on the optic nerve, well away from the eye itself. I'm not saying it doesn't - I'm saying it is very rare." medically you may be correct, and specifically as to precise location. However, when experiencing this pain I can say with certainty the pain is such that you cannot define precisely. You just want it to stop and it is so overwhelming it would be impossible to truly define. Only pred relieves the pain.
I never had any pain as such in my eye - only thing I had after sight loss (and still do if tired) is a “eye strain” type of pain. Is this what you mean? Or does your eye itself hurt?
It was behind the eye. Seemed to be pushing my eyes out. Eyes felt like they were bulging. The pain was in the head, scalp too tender to touch. Skull was splitting and nothing could stop it.
Thanks for sharing your experience! I have to admit my eyes feel a bit strange today almost more like bulging but with the NSAID helping with pain I’m hoping it might all be something else I’ll keep thread update as I find out more next few days.
no problem. Only happy to share if it helps. I don't like to remember but it is important. At my worst I had given up all hope and genuinely thought death would be preferable to any more of it. I never have felt like that and don't ever want to be there again. I wish you well. You are well read and very capable young man. Self advocate, inform yourself and take nothing from anyone who can't or through arrogance through their qualification refuses to respond to the symptomatic evidence. Question everything until a satisfactory explanation is provided. You may not like the answer but work with it when satisfied you have something you understand and can deal with. Acceptance is hard and your life may change dramatically but retain hope and a positive outlook.
I think it is more pain behind the eye which sounds like it doesn’t track with GCA.
I think some of the differences and my age might mean it is more likely extreme sinusitis or something else.
I think along with the fact that the naproxen is helping is making me hope that it isn’t GCA.
Didn’t feel too bad today but very stiff neck and a little bit of pain all over.
Still thinking about doctor or hospital tomorrow depending on how I feel, I was going to come off the naproxen so there’s less risk of it affecting any blood tests with gp on Monday.
research cervicogenic headache. Do you cycle.? It doesn't mean you don't have it as you could have something else as well. Still go to eye clinic. Don't risk it.
You certainly are on the young side to have GCA (but that doesn’t mean it’s impossible, just improbable) which no doubt has led to variety of doctors dismissing it….. I’m guessing you’re weren’t seen by the duty ophthalmologist at the hospital, they have much better equipment than your optician, who was perhaps a bit blasé about headaches and sight issues.
Have a look at this post and try and get an appointment-
But I have to say as someone who had eye issues with GCA, you really can’t hang about, and if suspected (and I think that is where the issues lies) it should be treated as an emergency, same as a heart attack or a stroke.
Re your jaw- try the chewing test- chew gum for couple of minutes - if it hurts when you chew and then stops when you stop, could be another indication of GCA-
I'm glad the heavyweights are on board. You have good direction and advice now. DL has suffered badly so please heed her. I seem to have been miraculously lucky not to have lost my sight so everyone is different. I massaged locked muscles for hours each day to relieve the pain. The pain in aggressive massage was also bad but relieving. Blood supply to the brain, eyes, ears, is crucial and this disease reduces this. The muscle contraction must reduce the supply significantly. Unfortunately, until pred. is prescribed there is no release of the muscle contraction because the muscle is starved of oxygen. The inflammatory process must be controlled.
Just as an update I had a gp appointment yesterday who said it was migraines. I’m not too sure of the diagnosis because it’s definitely not been episodic or come with any neusea. He gave me a pescription for a tripitan.
However It turns out I had a health plan with access to a private gp helpline who has instead decided to make a rheumatology referral.
She is under the impression that it is inflammation related due to the steroids in a&e and the naproxen having an impact on the symptoms.
I need to now try and get this back into the nhs for an appointment but she said if any eye issues occur then go back to A&E.
I’m still in pain even with the naproxen and sumatriptan so it’s not helping much.
One other thing is that I’ve been to my dentist and they have given me a device to stop and clenching at night and that can help rule of TMJ.
I’m just really fatigued at the moment and hoping I Can get some progress with rheumatology.
I don’t think my symptoms are as extreme as yours but my neck has been really stiff during all this too! I also don’t have any visible temple arteries. The only thing I would say is that the pain is now more clearly in both temples compared to when it started on just the left one.
I’m trying to rule out TMJ at the moment as the dentist has given me a device to wear overnight to stop clenching, it’s not made much difference though.
I’ve also had to make a private rheumatologist appointment for next week which is on Wednesday so trying to just make it out until then.
I didn’t have raised/inflamed temporal arteries either - they weren’t affected, but the ophthalmic one was.
GCA affected cells aren’t spread evenly throughout all blood vessels -they appear spasmodically.
The temporal artery is always shown in pictures of GCA, and it’s the one that a biopsy is carried out on but that’s because it very close to the surface.
Others that cannot be seen are maybe be affected, so don’t rule it out just because you can’t see it!
The fact the headache is now both sides could be more symptomatic of GCA.
Please let us know how next week’s appointment goes.
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