Hi, I was diagnosed with PMR in June and have since become aware of the possibility of developing GCA, and the importance of quick action on 'visual disturbance'. I am currently on 12.5 mg of pred. I have no reason to think I have GCA, but am aware I should be watchful.
I get occasional migraines, always with a strong visual component, and I am looking for advice please, from anyone who can explain the difference between the two sets of symptoms. My migraines bring a classic bright spot (like after being dazzled by a glimpse of the sun) which grows quite rapidly into a large 'hole' in perception, an area of not-seeing, usually filled with jazzy moving lights like in a kaleidoscope, it lasts for half an hour or so. For me, the headache itself is not too severe, it is one sided dull pain, but I feel deathly ill out of all proportion .
I would like to have advice, if anyone knows, on how to tell the difference between GCA vision symptoms on which I should take action, and my migraine symptoms on which I shouldn't!
Many thanks, Ann
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Ann1A
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I guess all you can do is try to extract the anxiety and ask yourself, “on a normal migraine day, would I be thinking, “here we go again” or not?”. GCA signs do vary, of course it wouldn’t be that easy. Personally, for months I had sparks of light at night when I woke up for a wee and my right temporarily saw just grey. It would be gone in minutes and I’d go back to sleep, forgotten in the morning. When cycling hard I also had black spots in my vision which went if I powered down and this was probably weeks. However, with hindsight, I was also very not right and I would say, to look at your other symptoms that come with eye issues too. I would wake with base of skull pain and a vague headache in the morning which would be gone by the time I left for work. I had a neck muscle niggle that seemed resistant to massage. I kept getting crashing tiredness and kept wanting to eat chocolate in the evenings (though I hear many chorus, “..and?”) and during the day I’d sweat a lot and kept getting low blood sugar. My hairbrush seemed extra scratchy on and off for over a year, but this turned into a permanent feature. An occasional tingle in my temple for months turned into a permanent niggle in the last week or two. My pillow seemed to become slowly harder and I tried various ones over months. In the end my super soft memory foam pillow felt like a brick. Finally, it all just came together in a growing snowball of intensity. I also, had other symptoms which I think were coming from larger vessels, but that’s another story.
Of course there are the horror stories of people becoming blind with no warning but this is rare and you have to keep that in mind or go potty; same with any major illness that can go critical. So, be mindful of what is normal for you and watch for a slow creep of that normal into something persistent. Anyway, you’ll get more perspectives on this from others.
I think what I have gathered from people with GCA is that the headache was "like no other" which suggests it is likely to be "different". Unfortunately, getting the medics to accept that you can tell the difference may be difficult! And given the nature of your migraines, it may be difficult to tell the difference since there is no fixed GCA effect - I have heard people mention kaleidoscopic effects and black holes. The GCA headache can be temporal (along the side of your head) or occipital (at the back), one sided or bilateral.
Do your migraines respond at all to ordinary painkillers? If I got something in between the herald halo (like a rainbow flickering in the top right) and the ache starting it would abort the attack. That is unlikely to help in GCA.
I take migraleve pink, and they seem to shorten the duration of the vision problem, but for me, luckily, the pain itself is not extreme, tho for no readon the 'feeling like death' is.
So I would guess if I feel pain much worse than normal, or in jaw, or vision symptoms other than the bright and swiftly spreading blind spot , take action in case it's GCA.
This could be an early warning sign. I think that I failed to recognise early ones from my subsequent LVV-GCA diagnosis, this year. As early as 2017, I had differing blood pressure readings in each arm, quite severe headaches at the back of my skull( I thought it was my cervical spondylosis)and visual symptoms in the dark at night. My very thorough Rheumatologist commissioned amongst other CT scans etc. an MRI scan, a head scan and an angiogram. Slight abnormalities were found in the MRI scan. Eventually I was lucky enough to be given a specialist Ultrasound Scan which showed abnormalities in the auxiliary arteries in both armpits IMT 0.9 mm on right side and 1.1 mm on left side with slope sign visible. Some of this, I have only just discovered from a recent case summary that I received a copy of. The point is, she kept trying to discount other conditions and move towards a definitive diagnosis. Mainly because I felt unwell and coming off Prednisalone was still a struggle after 4.5 years. If you are anxious, I would trust this intuition and push for tests. I stopped feeling like I was getting better and was fixated on the common symptoms of GCA that I didn’t have eg jaw claudication. Good luck!
These are the classic symptom usually quoted - note the comment about NEW type of headache.
Headaches - the exact form this can take can vary, but the pain of GCA is a new headache, of a kind that the person hasn't had before
Pain in the head
Tenderness of the scalp, for example when you comb your hair
Blood vessels at the temples may look or feel prominent.
Sudden loss of vision
Double vision.
PMRpro is correct, a GCA is not like any other headache you’ve had before.
Difficult to explain....mine was like two vertical steel bands starting from back of neck, going up over top of head, down face through eyes to jaw....and being tightened.....if that makes sense.
Plus sensitive scalp, almost neuralgia type pain....similar to SnazzyD’s description, unable to touch.
No visual disturbances until last 4 days when blurriness commenced along bottom of right eye and continued to work it’s way over entire eye resulting in sight loss, and subsequent diagnosis.
To me, yours doesn’t sound typically GCA, but obviously if you are concerned and should symptoms increase/change then you need immediate attention. A&E if in UK, ED if overseas.
I've never had migraine and only occasionally had headaches before GCA. I'd say the main difference for me is the location of the pain. The tension headaches I sometimes had were very much at the front of my head above my eyes, but the GCA headaches were all at the back of the skull, worst just behind my right ear - which is where I had my (positive) biopsy - and down to the back of my neck. It was also different in nature, like a dull heavy pressure or sometimes like a vice gripping me.
I have suffered from migraines for years & my GCA headache was like a low grade migraine that wouldn’t go away.The pain was behind one eye, & I thought it was a migraine. After suffering from this for 2 weeks I developed jaw claudication, as well as a tender scalp.
My GCA headache was like no other. Felt like I was carrying a sandbag on the affected side. My head began to droop it got so bad. My pillow felt like concrete - there was no escape. I had no jaw claudication or tender scalp but had numbness on that side of the face. I had ‘ shower’ like visual disturbance which would come and go.
I’ve always suffered migraines when younger and doctors were keen to blame them again. I said these are not anything like the migraine headaches I used to get.
No painkillers helped at all.
I had lots of tests - angiogram/TIA/jaw misalignment - all negative. Until I lost the sight in that eye. Was fast tracked to Rheumie and once on pred sight returned and I felt like a new woman.
There are lots of symptom but don’t apply to everyone. The ‘not responding to painkillers’ seems to be typical though.
Ann, your post has been of interest to me as I experienced very similar migraines prior to being diagnosed with PMR, except the pain was quite severe and always on one side of my head. They started in my early 20's . For the first 5 years on prednisone (I'm a long time PMR'er) I never had a headache of any kind, let alone a migraine. Out of the blue last year the pre-migraine aura came out of the blue and boy was I scared! I stayed as calm as possible, took some over the counter pain pills and waited. The pain never really came on, but I had a "heavy head", what I would call a migraine hangover. I had a few more of these instances and discussed them with my doctor. At the time I was going through some medical procedures which may have resulted in dehydration so we put it down to that. I've had the occasional one or two again this year and I don't like it.
I totally understand how you feel, I'm anxious and helpless. I have had only one migraine since starting pred in June, and in that the sick exhausted 'hangover' was the worst part rather than the headache at the time. It has been suggested to me to contact my optician if I am unsure, and I am lucky enough to live close to their shop, so that could be a route for me. Thanks for responding, hope things go well with you,
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