I’m new here, apart from browsing and learning a lot, thank you. I am female age 67, in UK. I am asking humbly for your thoughts, realising that I am much better off than so many on this site to whom I can only offer my sympathy.
Can anyone help me judge whether my current frequent headache may be due to GCA, adrenal insufficiency or something else of concern, or hopefully just a temporary thing and nothing to worry about, possibly from prednisolone withdrawal or sleep deprivation?
The headache is mild. It is there every day on waking ( and sometimes when I wake during the night). It is located across my forehead, usually symmetrically centred. It often disappears completely during the day. I haven’t taken any painkillers for it. It began to appear when I was nearly tapered off a high dose of prednisolone, and has continued to occur during 12 days off prednisolone. I do not usually get headaches.
Any thoughts? I realise that this is not the place to come for diagnosis, but if you read my full story below you may see why I am asking here.
About 7 weeks ago I had sudden onset of severe floaters in left eye, which got me sent to ER, and thence to emergency appointment with ophthalmologist and loads of eye tests. With hindsight, I think the original concern was that I had PVD (posterior vitreous detachment) which might be about to cause retinal detachment. But the ophthalmologist was obviously well trained to look out for GCA . I had no symptoms of pain or vision loss ( though the floaters are so bad it is a bit hard to be sure) . Testing showed some difference in pupil response to light, and loss of colour vision on left (as shown by those dot tests, my colour perception seemed normal to me). The ophthalmologist explained about possible GCA, gave me packets of prednisolone to take home and said he would phone me to start taking them if blood tests came back showing inflammation. The next day he phoned that ESR was 57, they had accidentally failed to test CRP, start taking 60 mg prednisolone. I had ultrasound on temporal arteries the next day, all clear. The following day floaters appeared in right eye and after a few days the right eye had worse floaters than left. Follow up at ophthalmology after 7 and 14 days, nothing new from eye tests except colour vision back to normal, ESR down to 43, CRP normal, discharged from ophthalmology with a diagnosis of PVD, and referred to rheumatology.
Rheumatologist said “low clinical probability of GCA”, taper rapidly off pred, discharged.
I was on 60 mg of pred for 16 days. Taper was 3 days each at 50, 40, 30, 20, 10, 5. So in total I was on pred for 34 days. I have been off it for 12 days.
The side effects of pred were incredible levels of sleeplessness ( between 1 to 4 hours at most in each 24 hours). I would fall asleep easily, wake feeling like I had slept all night, but discover that only an hour or two had passed. I felt very energetic and was doing housework etc during the night, and only sometimes had a second sleep. This didn’t change until I was down to 5 mg of pred. Only now after 12 days am I getting back to around 7 hours sleep a night, and I am dreaming again. I have never had any sort of catching up long sleeps as I would have expected. Nor have I felt fatigued really, just normal and not hyped up. So really nothing to complain about at all, except this headache. And of course, the little worry about actually having GCA which I had never heard of two months ago.
I’m looking for comments about the headache compared to GCA headache. Also whether anyone had a diagnosis of GCA after having floaters, differential pupil response to light, or loss of some colour vision?
Coming off Prednisolone
Going off prednisolone
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