GCA? or something else?

[agingfeminist]

Yesterday was an even more stressful day than most others. I had worked, as I usually do, for about 4 hours online, when I got a twinge of a headache in my right temple and then my field of vision was broken by bright zigzags ...it was frightening and reminiscent of what happened just over 4 years ago ...which had put me in hospital and resulted in a rhematologist saying he thought it was GCA and raising my 20mg (for PMR) to 60 mg.

I have recently tapered to 0.5mg and all seems to have been ok. I took a couple of paracetamol for the headache...which did not get worse but the zigzgs didn't go, so I took 10 mg of pred...in 30 minutes my vision was back to normal. I remained in a darkened room, without working, for a few hours...and it hasn't come back.

Perhaps I should mention that I had noticed recently a peculiar numbess along my forehead and also sometimes on my scalp . However, if I scratch it I sometimes get extremely sharp pain at the site of the scratch.

Was yesterday's episode a GCA twinge?...can I drop back to .5mg tomorrow?

I live alone and really rely on you all for your advice and guidance...a big thank you in advance if you have any thoughts on this episode.

PS I can't ask the rheumatologist because he is totally unapproachable and very unpleasant

[HeronNS]

Zigzag pattern is a classic symptom of migraine which usually clears relatively quickly. It may or may not be accompanied by a headache, which in my experience, especially when I was younger, can be extremely severe and debilitating. Paracetemol (Tylenol for me) has always been relatively useless and no good at all for a migraine. Naproxen worked very well for me until I stopped taking it as it bothered my stomach. This was when it was still only available by prescription. So it's aspirin now, although at one time I kept a supply of very low dose codeine on hand to use when aspirin wasn't enough.

As a lifelong (since my teens) migraine sufferer I personally wouldn't be concerned about a migraine, but if you have not had this before I think it's worth mentioning to your doctor, your GP if not the specialist, most especially because you have noticed scalp sensitivity.

Migraines can manifest in other ways. My son used to throw up and we had no idea what was going on until I remembered that this would often happen on hot sunny days, so I suggested we treat it like a headache, not a stomach upset, and that was what it turned out to be - migraines. My father had migraines. He called them his Thursday headache as that was his day off and he always got a headache. My brother-in-law thought he was having a stroke when he couldn't speak for a short while, but it was determined he'd had what they call a "silent" migraine. Years ago when I was pregnant with my first child I had an episode when my tongue went sort of numb and I felt very peculiar. Naturally I called the duty doctor at the practice but he said I was having a "vascular attack" which he seemed to think was inconsequential. I think I'd have found the word "migraine" more reassuring, but there is something to the words "vascular attack" which does go some way to explaining what may be going on.

[agingfeminist in reply to HeronNS]

Thank you so much for this reply. I do now wonder if I ever had GCA! It was very similar and I did suggest to the rheumatologist that maybe the episode I had was something else and not GCA...I didn't know about the GCA symptoms then (learnt about them on this site). He just looked at me and said "Oh so you want to go blind." His registrar was with him and loooked totally shocked..,

a type of migraine makes sense...but I did panic yesterday.

I have headache migraines before but it was the visual problems that I have only had when I got the GCA diagnosis. and this time the headache was very slight.

Thank you for your reassurance...back to 0.5 mg...feeling really relieved.

[Bcol in reply to agingfeminist]

My OH uses Migraleve if she feels or has an attack coming on which seems to work well

[HeronNS in reply to agingfeminist]

I'm glad the headache was slight. I haven't had a really painful headache for years (touching wood) but still remember times when it felt like someone was digging out the side of my head with a spoon. All I could do was sit (couldn't lie down) in a darkened room and hope to fall asleep because the pain was so awful. Had to call hubby home from work one time because my little girl had a friend over to play and I was completely incapable of keeping an eye on them. He said my face was grey. When people talk about how terrible the pain of a GCA headache is I can't imagine it could be worse.

[agingfeminist in reply to HeronNS]

So good to know you don't get them anymore....I feel a real wimp having got so worried aobut yesterday's episode...it also helps to put PMR in perspective (at least it is pain we can eliminate)

[HeronNS in reply to agingfeminist]

No, you reacted in a perfectly understandable way. We all get into trouble if we try to be too stoical. And your question triggered an interesting thread.

[agingfeminist]

Thank you for this recommendation. I will ask the pharmacy to bring me some (I can't walk far so don't go out). So helpful to have you all on this forum...

[random901]

Hi aging feminist! Sounds similar to my ocular migraines, which are sometimes accompanied by numbness around the mouth. Had mine checked out recently by opthamologist as I also have GCA, but was reassured. Made my rheumy panic, though! My migraines go of their own accord in around 30 minutes if I lie very still and relax, avoiding light and loud sounds. They're quite random - can't identify any trigger.

[agingfeminist]

wow...ocular migraines...looked up...sounds exactly what I had. Thank you..very unpleasant but not GCA! I really panicked.

[DorsetLady PMRGCAuk volunteer]

As others have said, does sound more like a migraine, and have given their experiences/advice.

But very scary nevertheless…. Do hope it’s settled now… and provided it has you should be able to drop your Pred dose… but as to your comment ‘Yesterday was an even more stressful day than most others’ - maybe not as low as 0.5mg..

[agingfeminist in reply to DorsetLady]

So happy to hear from every one...feel dreadfully alone sometimes...the 10mg helped my adrenals enormously. I think maybe 1mg would be a better idea.

[DorsetLady PMRGCAuk volunteer in reply to agingfeminist]

Even a drop down to 2 or 3mg , and have a better QOL..

[agingfeminist in reply to DorsetLady]

I have given up on QOL...but survival is important...2mg is in my pill box. Thank you!

[DorsetLady PMRGCAuk volunteer in reply to agingfeminist]

👍

[PMRpro Ambassador in reply to agingfeminist]

Don't give up entirely on QOL - because without it, survival isn't much fun.

[agingfeminist in reply to PMRpro]

fun? gave up on that a while back...survival is definitely underrated.

[PMRpro Ambassador in reply to agingfeminist]

Was using a colloquial expression, not "fun" as everyone seems to mean it these days! Perhaps tolerable would have been preferable.

[agingfeminist in reply to PMRpro]

I'm ok with survival without any trimmings...don't fancy the alternative just yet.

[PMRpro Ambassador in reply to agingfeminist]

Depends how you look at it doesn't it!! If you've gone, you don;t know anything about it. A friend and I, both with painful chronic conditions, agreed the best thing about being dead had to be no more pain!

[PMRnewbie2017]

I've had it too. Only twice and i linked it to doing too much, skipping lunch and getting too hungry. I've never had migraine before. I'm an unconfirmed GCA with PMR, and I sometimes get a sharp twinge in my left temple which isn't connected to any visual disturbance or other symptom. My ???GCA headache affected the right side. When I asked my Rheumy about the twinge, he just shrugged it off. I also mentioned it to my optometrist and she wasn't bothered either.

[agingfeminist in reply to PMRnewbie2017]

such a relief to hear this...I feel so much better with all the reassurance! many thanks

[PMRpro Ambassador]

That is a common presentation of occular migraine - I had one a couple of months ago, first time in my life although I used to have migraines something rotten!! Scared me silly at the time but it fulfilled all the criteria and hasn't recurred so I'm not worrying about it.

Do you have a good optometrist you could ask?

[agingfeminist in reply to PMRpro]

no optometrist but a wonderful ophthalmologist but I would have to wait weeks for an appointment...

but I am now totally reassured by what you and every one has said...I will stay very cool next time (hopefully never again).. close my eyes and breath deeply..I will also get some migralev just in case....big thank you...added stress is definitely something I can do without at the moment.

By the way the 10 mg of pred felt so good...debilitating fatigue abated...

[PMRpro Ambassador in reply to agingfeminist]

I can imagine!!

[posthinking01]

Hi there I am not a Dr but someone who has 4 autoimmune conditions including adrenal insufficiency - I am of the opinion that steroids do no harm if you are deficient - no worse than taking a vitamin supplement for say B12 if you have PA etc. - if you need it you need it - the problems occur with steroids when it is an overload on the system. So you felt better on the 10 mg because you body said 'thank you' !

[agingfeminist in reply to posthinking01]

I do in principle agree but unfortunately at high doses the pred caused muscle myopathy and basically dissolved my muscles...this hasn't improved at lower doses but there is the possibility that once I am off pred then my muscles might improve...

for the past four years I haven't been able to walk more than a 100 meters. I know that a little extra pred won't make things worse but I do have this hope that if I get to zero things might begin to get better (my doc said he isn't promising any improvement)

[posthinking01]

Agh I see - yes a problem - can I run something past you that I have just discovered lately - first of all that thyroid hormone is used in the processing of collagen - that is something I did not know - all the research I have undertaken in over 40 years and I never knew that - so I increased my thyroid hormone and a collagen problem has improved greatly - but in addition something else I have always known by working it out for myself - my adrenal glands when under pressure (they were under pressure due to thyroid hormone being too low) grab all the Vitamin C out of my body it can to keep me going - I have been covered in bruises - spontaneous bruises - holding a cup whilst washing up would result in a bleed and opening my bathroom door and my finger 'snapping' and bruising (tendon or ligament can never remember which) but actually found a research document to confirm my findings - that Vitamin C is used by the adrenal glands - I know the adrenal glands have the most Vitamin C in the whole body - so increasing the thyroid hormone to take the pressure off the adrenals and upping my Vit C and the bruises disappeared within a day. I can now do the very same things that causes the bleeding within the skin before with no problem whatsoever - just holding my mobile phone caused a massive bruise on the palm of my hand. I am pleased I took photos because no-one would believe how bad they were - which leads to me believe that Scurvy is actually an adrenal gland disease !

[PMRpro Ambassador in reply to posthinking01]

Well, they have the highest CONCENTRATION of vit C in the body - but that isn't necessarily the same as the most vit C in an organ because the adrenal glands are pretty small. However - if it works, fair enough.

[posthinking01 in reply to PMRpro]

Hi there - it seems very unlikely but it is true I have found by research let alone experience.

pubmed.ncbi.nlm.nih.gov/176...

The adrenal gland is among the organs with the highest concentration of vitamin C in the body. Interestingly, both the adrenal cortex and the medulla accumulate such high levels of ascorbate. Ascorbic acid is a cofactor required both in catecholamine biosynthesis and in adrenal steroidogenesis.

[PMRpro Ambassador in reply to posthinking01]

That's what I was quoting actually - concentration and total amount are different.

[agingfeminist]

a daily dose of vitamin C certainly can't do any harm...adding it my vit D3 and K2....

my htyroid hormones are monitored and are ok...so I will go with the vitamin C.

thank you

[Louisepenygraig]

I have had these on a very few occasions. I usually draw the curtains and lie quietly and they go within 20 minutes or so. I usually continue to rest and they don't seem to have much pain associated with them or develope into a full blown migraine

[agingfeminist in reply to Louisepenygraig]

thank you...next time..no panic...just dark room and rest...

[Twopies]

I have a history of migraines, used to have husband carry me to er because I couldn’t stop throwing up; they gave me morphine, sometimes 3x. The last time, 4 years ago, they said they were no longer allowed to use morphine, they gave me a pill which I immediately threw up so they gave me morphine. My migraines, very unlike yours, were diet related, most likely dairy which I now avoid. My husband has 2-3 barometric migraines a week; he takes extra strength excedrin. Our symptoms and causes are very different from yours; I’m just letting you know you have a kindred spirit when it comes to these blasted things. And as for your questioning whether you ever had gca, didn’t the doc do bloodwork to confirm it? I would hope so!

[PMRpro Ambassador in reply to Twopies]

Bloodwork can't confirm GCA - only a positive biopsy or ultrasound does that. And even then, only if the GCA is affecting the temporal artery - and it doesn't always.

[Twopies in reply to PMRpro]

Oh yeah, I forgot. So if it isn’t affecting the temporal artery, how is it confirmed? (Other than doc Martin style where he just looks at you?)

[PMRpro Ambassador in reply to Twopies]

About comes down to that - clinical suspicion! You treat just in case ...

[Twopies in reply to PMRpro]

OMG!

[agingfeminist in reply to Twopies]

symptoms are everything for pmr and gca...I now think the rheumie, who didn't have the time to listen to my description of the episode, just divined it in some magical way...and left me on 60mg a day for 2 months. (then I discovered this forum and realized I needed to taper the steroids).

I never had any symptoms after the initial short episode...which I now know seems to match well with an ocular migraine.

[Twopies in reply to agingfeminist]

😢