Query eyes: I have had GCA/PMR for 4 years now down... - PMRGCAuk

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Query eyes

Vpankhurst profile image
15 Replies

I have had GCA/PMR for 4 years now down to 9mg after a lot of ups and downs everything going quite well, but today I have had a funny zig zag pattern in corner of left eye which has now gone but is in the outer corner of right eye, when I am watching something I am aware of it in the corner of my eye. Have never had problems like this before is it normal?

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Vpankhurst profile image
Vpankhurst
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15 Replies
piglette profile image
piglette

It sounds like an occular migraine or silent migraine as you don't actually have the headache bit. I get it off and on, usually both eyes sometimes just one eye. It goes away after a while.

PMRpro profile image
PMRproAmbassador in reply to piglette

Exactly my first thoughts. If it doesn't go away - perhaps ask your optician?

Vpankhurst profile image
Vpankhurst in reply to piglette

Thank you for your swift reply it has put my mind at rest.

Personally, a swift visit to A & E would be useful. You have GCA, right? You are "at risk" group for ocular emergencies.

maria40 profile image
maria40

As you have GCA I would go to A&E just to be certain. Hope it is a false alarm.

Erolyn profile image
Erolyn

Get your eyes checked. The only early symptom I had for GCA was 'rainbows around lights' with my L eye and a fixed, dilated pupil. I was vey lucky not to lose my sight as I was referred straight away to an opthomologist at an eye clinic the next Day. I had the temporal artery biopsy but not till 2 weeks later, after daily prednisone of 80 mgm. of course it was negative. I weighed 50 kg. Still waiting to see a rheumatologist.

MayH profile image
MayH

I was diagnosed with pmr in October. I also have had three or four episodes of the zigzagging in both eyes months before diagnosis. Each time it lasted about thirty minutes and I was unable to focus as the lines moved across my eyes. My GP said they were ocular migraines and the optician found nothing wrong other than I have dry eyes. Each time it happened it was very frightening. I didn't get a headache with these episodes and had never had any sort of migraine prior to this.

in reply to MayH

MayH,

They all say that.. "it's an ocular migraine" as if it has to be OM because Dr said so. You know it's not.

j-e-a-n profile image
j-e-a-n

Hi V.

When I get an episode it is like tunnel vision looking through sparkly cut glass, but I had this before my GCA so was never worried about it once I found out that it was occular migraine.

cdenoncourt profile image
cdenoncourt

I agree with the others that it was almost certainly an ocular migraine, and I also agree that with GCA it's important to get checked immediately by an ophthalmologist, or at the hospital, ANYTIME a visual disturbance occurs.

I had never heard of an ocular migraine when it happened to me and all I could think was "No! After 3 years of proper treatment of my GCA am I about to lose my sight NOW???" I called my Rheumatologist who advised me to get my eyes checked right away preferably with my eye doctor, or otherwise at the hospital. My eye doctor told me that everything looked healthy and that from my description it was most likely an ocular migraine. Then he showed me a most interesting thing on his office computer. If you search Google for "ocular migraine" and then click on "images" you will see re-creations of the visual experience that clever people have produced with their computers. It was perfect for being able to show my family what I had experienced!

HeronNS profile image
HeronNS in reply to cdenoncourt

Thank you for that hint about the google images. One time I was in pitch darkness while I experienced this visual disturbance and it was like a serpent uncoiling itself in the centre of my vision and slowly migrating to the side and out of sight. It always used to be followed by a blinding headache, but nowadays I sometimes find if I make sure to drink far more water than I think I need the headache never develops.

judam9 profile image
judam9

hello Vpankhurst, i don't know for sure if this is the same as what you have. but i was diagnosed with the beginning of macular degeneration. then when i went back the ophthalmologist said i should wait until it "waves" . i'm not sure what he means by that. but when i look at straight lines , vertical or horizontal , the lines seem to pinch together, like a heart meter, which shows the beating of a heart . it just jumps high and low.

if i look at drapery it seems to pinch together and then straightens out. and it is constant. i have gotten somewhat used to it . but i don't know if it is waving or not. he said it is to early for an injection in the eye. don't know what to do.

JD4pmr profile image
JD4pmr

Thanks everyone - always a huge relief to find you are not alone on the planet with some obscure 'new' symptom!

I have had this several times over the past two years and it is very alarming as it comes on without warning.

I did have GCA for a while but now 'only' have PMR which is currently at a manageable level relative to three years ago i.e. pain is tolerable but have days of extreme tiredness, This may be related to SLOW steady tapering ... each time I go down 1mg of Pred and lasts for a few weeks.

The GP also diagnosed occular migrane and the opthalmolagist couldn't find anything wrong with my eyes. However during and after the distorted vision, I felt overwhelmingly tired, odd and 'wooly' headed and couldn't seem to get words out. I was on the phone at the time.

Vpankhurst profile image
Vpankhurst in reply to JD4pmr

Have eye to the doctor and she checked out my eyes and also rang the local hospital to speak to a specialist she thinks it is ocular migraine but if problem persists there isawalk in clinical the local ENT department and to go if I am still worried and if anything else happens.

She thinks I have been overdoing it because as soon as I feel better I tend to go berserk and do everything I can been feeling very tired and suffering from shoulder and upper arm aches like they are bruised. So now relaxing in bed and trying to rest but brain keeps racing don't know whether that is the steriods?

So will see how it goes thank you all for yours advice will letyouknow any outcome.

Thank goodness for this site as you all understand.

It's better not to assume that all is well, it's because a hospital dr said so. GCA is not easy to diagnose hence people do go blind or die after being told there was nothing wrong with you. Sometimes, it's not possible to see the actual inflammation. If you are symptomatic, it's prudent to assume that it could be inflammation rather than believing "oh it's an ocular migraine again and that's probably nothing". One's Body has its own ways of letting you know when there's something not right. Pay attention and think very carefully. It's not easy to diagnose. Drs tend to notice once you go completely blind or your eyes turned red. GCA can be very subtle, painless. It evades a diagnosis quite easily.

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