Eye migraines

[kathleen18]

I have eye or ocular migraines fairly regularly which never or rarely happened before PMR. Is this yet another symptom I have to put up with? They don't last too long thank goodness!

[PMRpro Ambassador]

Not one I've heard many complaints about to be honest. You/your doctor is sure it is migraine?

[MayH]

Kathleen I had a 4 or 5 ocular migraines over a period of a couple of weeks , just a couple of months ago. ..no headache just visual disturbance. Got an emergency appt with the optician and my GP the same day as first disturbance and was sent straight to A and E to have my Esr and Crp levels checked ( obviously concerned about GCA). Both levels were good but doc on duty advised getting a referral to TI A clinic should it happen again. Back to my GP when it happened again and he checked blood pressure and did a full blood screen. Everything was normal. I have been fine since. Each episode lasted about 20 mins and especially after the first one , I felt a bit off for a few days and I had a bit of a dull headache. There were no obvious triggers and each one happened in the morning. Also a couple of years before getting PMR I had a couple of similar disturbances and then nothing until this year. All I know is the doctor said they tend to come in clusters. Sorry for not having any clear info for you but thought my experience might be of some help 🙂

[kathleen18 in reply to MayH]

Thank you for your reply. They don't seem to follow any particular pattern that I know of unless I have been doing too much and it is tiredness. I just wondered whether it is common. Luckily they don't last too long, about half an hour.

[lyndamcw in reply to MayH]

Me too exactly same pattern of migraine....but all clear now

[Gaijin]

My eyes seem to get tired when i read or am on the screen too long.They are dry and they almost constantly tear. I went to the ophthalmologist who prescribed a gel for my eyes before bedtime and some artificial tears for daytime. Sometimes it's impossible to keep my eyes open and yet I can't fall asleep..very annoying. Im sure its a side effect of Methotrexate or the bp medication I'm taking. Or maybe the PMR has made all my muscles weak, even those involving the eyes . It's definitely not the prednisone in my case.

I can imagine what you are going through.Having PMR/GCA , any eye related symptoms are SCAREY😱...but if the Symptoms come and go, it's probably not important..

[lyndamcw in reply to Gaijin]

I have the same sleepy eye syndrome and can't seem to shake it..even though I have been reduced to 10mg pred.I have PMR and GCA

[kathleen18 in reply to Gaijin]

My eyes get very tired and heavy too. I used eye lubricant drops several times a day which helped. The muscles around my eyes felt tight and stretched. I asked the doc whether this was due to the PMR and he said yes! It is a lot better now. I am now finding that I wake at night after a couple of hours sleep and am then awake until the morning, very annoying and all adds to the tiredness. I just wish doctors told you all these things might happen it would save so much worry and stress.

[Gaijin in reply to kathleen18]

You are so right! Drs don't tell you enough...some nothing at all! With all the information we have now at our fingertips, docs are now in need of a serious overhaul if they want to keep being useful. I managed the first six months of my PMR without any doctors..only PMRpro and my hubby who wrote the prescriptions.

It was good to hear that the sleepy eye syndrome is caused by PMR..all the things you learn on here! Thank you..

[Skodadet]

Me too....except that I usually get headaches too about 20 minutes to half an hour after the visual disturbance. They often come in clusters and sometimes seem to be triggered by changes in the weather and sometimes when I overdo things, More often I can't work out what has triggered them, But again, this is something that only happened about twice in my life before PMR, but since PMR it's quite a regular occurence. Rather a nuisance when I'm driving, out and about or in company.....everything has to stop until the vision comes back.

[blackstone1]

I have had these migraines for years. The break up my visual field into zigzags I have not noticed an increase since pmr diagnosis and seem to be harmless certainly better than the awful pain of normal migraines

[JD4pmr]

Hi Kathleen,

Not sure if this is what you are referring to, but for a period I was getting very bizarre visual disturbance from time to time, generally only in one eye, with black zigzag patterns obscuring my vision, and following this I would feel washed, out for the rest of the day sometimes but not always with a very mild headache. It sometimes also affected my speech and I couldn't actually articulate what I was trying to say. I was really anxious [to put it mildly !] but after several GP visits I was 'assured' [!] that it was only ocular migraine. Haven't had on for a while touch wood - the trigger might have been stress or climate related.

Good luck

[kathleen18 in reply to JD4pmr]

Thanks, glad I am not the only one!!

[1Purplecrow]

It is indeed a real thing! Never heard of such until my mum was diagnosed. Annoying, but otherwise seemed harmless (??) . Not related to Pmr, at least, she never had any indications.. I had migraines, now Pmr, perhaps genetically related?

[Tigger6717]

Hi

I had visual migraines about two years before getting GCA. I was told not to worry about them and they did dissapper about six months before I was dignised, so not sure if they were linked in any way. Mine were triggered by bright light so I had to wear sunglasses when it was really just a bright day,but occaisionally I got them late at night reading.m Still don't know if there is any link but they were pretty much all right sided and and that wa the side the GCA kicked off on.

[JanetRosslyn]

I started getting ocular migraines a few years ago, pre-PMR, so I can't blame the Pred. I'd never heard of them before, and they were worrying at first, but I had them checked out and now I know all I have to do is just sit down and shut my eyes for ten to fifteen minutes and they'll go. They're always the same - a dazzling bright white zig-zag arch set in a shimmering haze. It always appears to my right, no matter which eye I look out of, and it appears even brighter when I close my eyes. It's quite pretty actually.

[Hidden]

Yes I get these too. I haven't had them since I was on the pill years ago and then throughout every pregnancy so I assume for me it is hormone related. They started again at the beginning or my steroid journey and more on reducing. Now they become very frequent if I have to increase steroids for any reason! Go figure!

[PMRpro Ambassador in reply to Hidden]

The hormone regulation is very closely linked - pituitary, hypothalamus, thyroid. All sorts of things...

[Hidden in reply to PMRpro]

Thank you. It certainly has made this PMR/GCA journey and tapering steroids a little more complicated.