If not Temporal Arteritis, what could it be?

[Zebedee44]

For the past two days I have experienced flashes of pain in my left temple area and a tender scalp. It improves with paracetamol taken at regular intervals but at certain angles my head really hurts, albeit briefly. I’m pretty sure it’s not GCA because there are no vision or jaw involvement, but what else could it be?

I’m dealing with a hugely stressful episode just now and only just over a UTI; raised my dose to get through that and now at just above where I left off (7mg instead of 6). I feel ok and certainly better than I did at 5/6mg, but the temple pain is a worry. Any thoughts and advice would be welcome, thanks. Chrissie

[SnazzyD]

Hello,

Could it be referred pain from your existing jaw issue?

Also have a look at sternokleidomastoid muscle tension that can mimic GCA. See if this list of symptoms chimes with your experience. The video shows where it is and you can see why one gets the symptoms one does.

healthline.com/health/stern...

youtu.be/eD3Ds3GIt9M?featur...(Not working as expected?)

[Zebedee44 in reply to SnazzyD]

Thankyou, I don’t think it’s that although I have a lot of pain in my throat and waiting to see ENT. Due to collect a mouth guard from my dentist tomorrow to stop me grinding, and I’m aware I am in a state of anxiety so I think there is a lot of tension throughout my body. Recent UTIs, antibiotics, pred increase and reduction, worries about Covid jab etc etc, I’m hoping all that is the cause of these unpleasant flashes of pain.

[DorsetLady PMRGCAuk volunteer]

As well as SnazzyD suggestion, it could be cause by migraine or tension [you say your are in stressful situation]…

[Zebedee44 in reply to DorsetLady]

Thankyou for your quick response. I am a migraine sufferer but this is not like the usual onset of a migraine. My migraines do not respond to paracetamol, only the tryptan meds I am prescribed.

Yesterday evening the pain extended from my temple via my ear to my throat where I already have a painful area (and waiting to see ENT). But it was nothing like the trigeminal neuralgia I often suffer in my left cheek and ear.

With great sorrow I am having to let my fabulous pony Piper go to a new home, the rigours of managing PMR and adrenal insufficiency having finally worn me down. He has many years ahead of him to give pleasure; I must accept that I have battled for 6 1/2 years with PMR and it isn’t getting any easier to care for him. And osteoarthritis is raising its ugly head again at lower doses of pred, alongside the fatigue, nausea and general not feeling too great of AI.

So it’s probably a build up of stress and anxiety about what lies ahead thats causing these flashes of pain.

Pony and trap in front of church with two young girls.

[DorsetLady PMRGCAuk volunteer in reply to Zebedee44]

Yes probably stress and anxiety -and so sorry to hear you have to let Piper go - I know how much he has meant to you over the years.

[Zebedee44 in reply to DorsetLady]

Thankyou, he has given purpose to my life, kept me active and made me tremendously proud.

[SnazzyD in reply to Zebedee44]

Sounds like ENT is a good place to go. The ear and throat is linked by the eustacian tube and someone needs to have a look at the throat.

[Zebedee44 in reply to SnazzyD]

I have been waiting quite a while for this referral, the GP having first prescribed omeprazole for a sore throat he thought was acid reflux. It’s a lot worse now and waiting time here is 48 weeks but an appointment has come through for next month.

The intermittent stabbing pain has continued through the night and now in my left brow, more like my usual migraine symptom. My prescription medication might resolve it, here’s hoping .

[Rugger in reply to Zebedee44]

Here's hoping that it is your "usual migraine" and that it resolves on the medication. Maybe the mouth guard will help too, if you have been grinding your teeth - you mentioned your jaw alignment in a previous post.

We hope that Piper's move to Scotland will take some pressure off you, although at the same time causing you this stress and sadness. Hold onto all the good things that have happened whilst you have owned him, which have given you such purpose, pleasure and pride. 🐎

Thankfully, you haven't too long to wait for the ENT appointment. 🤞

Thinking of you. xox 🌻

[Zebedee44 in reply to Rugger]

You say all the right things Sue, and I thank you for that. Piper and I have had a good life together and he has carried me through some rough times and throughout my PMR (journey) since 2016.

The tryptan got rid of my temple pain for several hours but it returned later along with muscle pain and fatigue but that was more likely the Covid jab I had this afternoon. So I’m still none the wiser, just being cautious.🤒

[marionofnorwich]

Poking my nose in here but is there any way you could share him? Either with the new owners if they are local or can you find anyone to take care of him fir the majority of time? I know that you will have explored all options so just vain hope in suggesting it but my heart goes out to you

[Zebedee44 in reply to marionofnorwich]

It’s a lovely idea and I have needed quite a lot of help this past year which is why I made the decision to let him go. We have accomplished more than I ever thought possible together and I know he will make his new owners very proud and have a good life in Scotland, far far away from where I am in East Sussex.

[marionofnorwich in reply to Zebedee44]

Oh it is sad that he will be so far away but perhaps you can visit. So long as he is going to a loving home, I am sure he will re-bond and be happy, even if you won't so that must be some consolation and you might also feel some relief that you aren't letting him down by not being as active as you need to be. Good luck in any case

[Stills in reply to Zebedee44]

Hope this is not a weird thought but perhaps the new owners could send you some of his mane hair when he’s groomed so you can still smell him….

[Stills in reply to Zebedee44]

and face time so see can hear him

[Stills]

I have very recently experienced this and assumed it was migraine related. The pain was very short each time, no longer than a stabbing feeling but very intense. I also had a partial blurring if the eye on the pain side. At the same time I started having dreadful vertigo and nausea which reinforced my focus on it being migraine . A night in the ER delivered a diagnosis of Orthostatic hypertension and medication. I’m not convinced of this though. At the hospital they refused to take my AI condition into account and ignored my thoughts on vestibular migraine. The medication is called Prochlorperazine to stop the nausea during vertigo attacks. Like you I’ve had stress overload this year and am left thinking it’s all down to that . Drs made me feel a fraudulent, hysterical, hypochondriac, menopausal woman and I’m not going back. Sorry you have to send your pony to a new life but he will be happy when he’s settled in and always remember you x

[PMRpro Ambassador in reply to Stills]

"Drs made me feel a fraudulent, hysterical, hypochondriac, menopausal woman and I’m not going back"

That is utterly disgusting and worthy of a complaint. I don't blame you.

[nallufl24]

I’m not any kind of expert but I did not have any vision or jaw pain issues with GCA. I had a headache, depression, malaise. I slept all day. A biopsy showed GCA. My point is we all have such different symptoms of GCA.

[PMRpro Ambassador in reply to nallufl24]

Quite - but doctors won't have it ...

[Maxslady]

“…Pretty sure it’s not GCA because there are no vision or jaw involvement…”

I thankfully didn’t have vision problems, and my jaw involvement didn’t come until about 2 weeks after I noticed my temples were tender and headaches began. It was the symptom that convinced me to put in an urgent call to my doctor, who took me very seriously. I have biopsy proven GCA. So please remain very vigilant until you know for sure.

[Sharitone]

Just for the record, and it's reassuring that paracetamol works for your head, but I had neither vision nor jaw problems with my GCA.

[Zebedee44 in reply to Sharitone]

Hi Sharitone, can you tell me what symptoms you had that indicated GCA?

[Sharitone]

Increasing deadly/ deathly fatigue for some months (which has never got better), then a VERY stiff neck, then a slight bilateral headache above the eyes which did not respond to painkillers. then gradually got worse over the next 4 days, then on the 5th suddenly took off, tothe extent that the GP told me to go A&E.

All, except the f-word, magically improved at 60mg pred.

[Zebedee44 in reply to Sharitone]

Thanks for that info. It’s interesting that several of these replies report no eye problems or jaw involvement. I haven’t experienced fatigue since I raised my dose from 6mg to 10mg for a few days while dealing with a resistant uti. Even at 10mg I feel quite wired, can’t imagine what it feels like at 60 mg!

[PMRpro Ambassador in reply to Zebedee44]

Any given listed GCA symptom may only appear as the presenting symptom (the reason you went to the doctor) in fewer than half of patients though overall the rate is higher. Some of them appear very late, some never at all. Unfortunately, a lot of doctors believe that there MUST be headache (which in fact is not seen in 1/3 of patients) and visual or jaw symptoms. If you have visual or jaw symptoms they are the red flags demanding a much higher starting dose and immediate action, One source I have read said that if there are any visual symptoms there is probably a week at most before you are risking irreversible and possibly total loss of vision - once you lose sight in one eye, there is a 50/50 chance of losing it in the other within 2 weeks.

This is the most recent update from UpToDate which is usually a particularly good source:

uptodate.com/contents/clini...

[Zebedee44 in reply to PMRpro]

Thankyou for posting that report PMRPro. I am pleased to say that the flashes of pain in my temple have stopped, along with the tender scalp. Possibly my newly fashioned mouth guard has helped. But bearing in mind the time scale for onset of GCA I will be alert to changes.