From suspected GCA to cluster headaches what a minefield

[Gaz227]

I have been experiencing temporal headaches for over 3weeks , I have a history of PMR and was taking 5 mg of prednisolone tapered from 20 with ups and downs over 3.5 years . Of course ininital concern would be GCA with given history. ESR and crp normal , headaches come and go and did not respond rapidly to high dose steroids , CT scan normal even at the point of headache , other symptoms with the headache are eyes tearing stuffy nose, eyes sore , face and side of head pain, when I was doing exercise the headache was easing down and even disappearing , i have no PMR pain what so ever and prior to the headaches starting was really doing well better than I have been in last few years , I thought I was nearly out the woods so to speak. My Rhuemy is not convinced with all the clinical results in front of him that it could be GCA more likely headaches sounding very typical of the start of cluster headaches . Anyone else with those symptoms for cluster type headaches , why do they start and how do you get rid of them if that is what it turns out to be. Any ideas ?

[PMRpro Ambassador]

Which rheumy?

[Gaz227 in reply to PMRpro]

I have 3 on the case now , Dr Hughes hasn’t responded (I think due to not having the full medical facts or actually seeing me at his practice , plus I think he must think me a pest) ,

Dr Singh said very unlikely GCA given all the facts and seeing me first hand , but is monitoring and Dr Kattack is convinced but won’t put 100% , his point being that I am also on medication for a prostate problem which he said will cause vascular type headaches , but strange how that just started when I had been using the meds for some time .he said it could be my body just won’t tolerate it anymore . Currently on 25mg today and reducing at 5mg per week till the end of the month. My headache symptoms once reading up on it are classical of cluster headache , the constant tearing and eye pain I think made them come to that conclusion . It’s still a minefield , I don’t think there is a best out of the potential 2, GCA or cluster headache just hope it all settles down .

[Telian in reply to Gaz227]

Hope it does settle Gaz. I can't help with the cluster headaches as mine was GCA - doesn't sound like yours is if it doesn't respond to the higher Pred. Just because it's been dismissed now keep on your toes about it, hopefully it isn't that.

[Gaz227 in reply to Telian]

Thanks Telian , I am staying as alert as possible to anything that develops

[coda123]

Hi Gaz,

When I had a biopsy for GCA after head pain, it was negative but I had scalp, temple, and jaw pain and definitely have PMR. But all along I've had interludes from a week to a month at a time of cluster headaches, with watering eyes , stabbing head and nose pain. I was prescribed sumatriptan and it worked rapidly. I also had episodes of "Retinal migraine (ocular migraine) is an eye condition that causes brief attacks of visual problems like flashing lights in one eye. ... Retinal migraine is a separate condition and shouldn't be confused with headache-type migraine or migraine with aura, which usually affects the vision of both eyes" See NHS for more information.

I hope this helps..good luck and keep in touch. Coda

[Gaz227 in reply to coda123]

Thanks Coda all taken on board 👍