This is mainly for DL or anybody else on the forum who has had sight loss through GCA.Just wondering if she/ they find the tiny bit of light that remains in the eye ,very disconcerting?Eye hospital say just wear a patch or block out lens on glasses,but sometimes it is nice not to have to wear anything,especially in this awful heat.Does it get a little better if Pred is reduced/ ended or is it a case of just something that one has to get used to over time?Even after 18 months I find it annoying!Just another moan from me!😜🤣
Annoying flashing eye!😜: This is mainly for DL or... - PMRGCAuk
Annoying flashing eye!😜
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Angelsmummy
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51 Replies
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DorsetLadyPMRGCAuk volunteer
Yes it can be annoying at times -and sometimes I’m tempted to shut offending eye temporarily. But it does become the norm in time, and I mainly ignore it. Usually only an issue if I’m very tired.
I did discuss wearing a patch with my very knowledgeable optometrist early days when brain was still acclimatising.
His advice was no. Reason being with GCA the eye itself is not damaged like it can be with some other causes - so they both still work in tandem when you look at things. People who don’t know about your sight issues assume looking at you there is nothing wrong.
If you wear a patch or black out the lens on that eye permanently, over time the message to the brain to sync the movement of both eyes via the relevant muscles will not get through. So the blind eye is likely to remain in a static position, or look like a lazy eye.
If you haven’t seen this, maybe have a look [no pun intended] -you’ll probably relate to much of the contents - also a link to more info -
healthunlocked.com/pmrgcauk...
Thanks SO much DL,things are a lot clearer now after reading your answer / link!Will now try and peel off the black Gaffer Tape from my glasses( wish me luck with that!)🤣Oh,what a waste of4 pure silk black eye patches,maybe I could donate them to the local Amateur Dramatics club!😂Just feel a bit disorientated not blacking out offending eye,but will persevere and hopefully like you will get used to it in time.Amazing how different specialists have different ideas eh? Got used to a lot of things but wear my sliced fingers and bruises etc like medals,new ones most weeks!Latest was walking into open door of base unit cupboard and tearing lower ankle on corner!Ouch,thank god for steristrips.Many thanks for advice and really enjoyed reading your link even though some of it was sad.Glad you have the same dark humour as me!( have made a few enemies over it!) haha.xx😜😐🤕🤕🫨
Don’t get rid of all of patches - you never know when you might need to do a Long John Silver appearance at a fancy dress party!
I still have all fingers intact-but can’t say same for all my mugs and cups .,,
Me too on the humour front… glad to say between the both us, hubby and I have passed it on the children and grandchildren.. 🤣😂
Just taken patch off.WEIRD!,don’t like it at all,am cooking bacon for hubbys tea but feel like I am on a boat!Wonder if he would notice if I gave it to him raw??🤪
Told you, you could do a Long John Silver impression ….just bung some sauce or baked beans on the bacon….😳
But perhaps you could have done it when attempting a less hazardous activity - and that’s not a comment on your cooking…
Nothing wrong with MY cooking!The dogs LOVE it!🤮🤮😜
Have you got an airfryer? It is brilliant for bacon ...
No,afraid not,daughter keeps on at me to get one but cannot be persuaded I am afraid.A rare treat for hubby to have bacon,( grilled) He hasn’t hardly any taste buds/ sense of smell due to the dementia,so whatever I cook is tasteless to him anyway!🤣Only joking,even if I say it myself ,I am a reasonable cook,in fact when I was on high doses of pred in the early days,my grandson wanted to set me up a U tube site calling it Nana s Nocturnal Cooking ,as I was wired for 48 hours ,then crashed for a day,😜so spent the time cooking for family .I even bought 2 extra freezers as I had made so much.Everybody is suffering now as I am low dosing and because I am on my health kick,NO more bacon puddings ,apple pies,crumbles,savoury pies,etc,if I can’t have them no other buxxxx can!🤣
I love my airfryer - saves me a fortune in electric and it is perfect for meals for one. They are badly named - they don't replace fryers, they are mini hot air ovens that take 2/3 of the time to cook something. I resisted for a long time and then read loads about them, bought one, and wouldn't be without it
Well,maybe I will think about it then.
But on the other hand,not sure if I want to make my double oven obsolete!Not sure how it would fare making fruit cakes,sponges etc for celebrations?How is your weather there?Are you melting like us?Had enough of it now.Before the pred,was out in it all the time but now,shade and the dogs paddling pool is all I can manage.Typical Brits,moan when it is hot and then when it is cold eh?x😜☀️🌞
Where? Currently I'm in Scotland to escape the multiple weeks of 30-34C temps followed by frequent and massive afternoon thunderstorms we get in July and August - and it is absolutely perishing with howling gales! I expected cool - not March!
No, there remains a role for the double oven if you do baking and stuff. I don't any more, haven't for years because it was just us for 15 years and now just me. When the family visit in Italy they want the local food - pizza, pasta, Schnitzel, Kaiserschmarren and other Tyrolean yum which I don't do at home.
You're fine with black humour with us. We are a little bit evil sometimes ...
Just as well,as I really don’t have a filter sometimes!I always get invited to peoples houses,once socially,the second to apologise!xx🤣🤬🤬🤬🤬🤪🤐🤐🤐😜😜
😂
My excuse is living with the NHS most of my life ...
The amount of blxxxx hospital appointments I have had of late,I might as well do a Lazarus and take my bed there!Thank god for humour but to be honest,where I live ,the locals are in very short supply of it!🤣🤣😜
Where are you?
Suffolk,but don’t hold it against me!Only joking the area is lovely but the locals don’t understand London humour!🫣🤫
No, but nor do most rural regions.
I know and I love it !!
and to PMRpro and DorsetLady....no need for me putting my two cents in...thanks for all the chuckles ...a great bedtime read. Love my air fryer too.💞
I lost sight in my left eye three weeks ago to GCA. Once on Prednisolone it did improve a tiny bit each day however the improvement stopped at 2 weeks. Out of my left eye I can see depending on light, murky shapes but no detail. It's better up to 2 meters, not so good beyond that, particularly looking into shaded areas.
The distorted view in my left eye seems to distort my good eye view. Outside in bright light or reading is not pleasant. It's less noticeable in the dark. What I can see out of the left eye keeps changing a little to add to the confusion!
I had hoped my brain would compensate in time. Not good to hear you have similar problems after 18 months 🤨😒
Your brain will adjust in time… and at only 3 weeks in, there’s still a lot of adjustment physically and mentally to do. Have a look at my link in first reply to Angelsmummy
Thank you for your reply 😀
Consultant did say, it will take 4 weeks for the inflammation to go down, so hoping what I'm left with is stable and not constantly changing!
Yes constant changes can be the confusing bit.. but high does of steroids can also make eyes a bit strange - ironic really- what saves sight can also disturb it.
You will get there - and manage what sight you do/don't have. as I've said many times over the last 12 years , it can be dashed annoying at times, and frustrating for sure, but it doesn't stop me getting on and enjoying live to the best.
Sorry to hear of your recent sight loss Welsh Merlin,know exactly what you are going through.Am afraid my left eye is only light perception,wish in a way it would totally go,would make life a lot easier for sure.Am trying DLs recommendation of not covering bad eye but it is making me feel nauseous,so will have to cover it up today whilst out shopping and try again later.Wish you all the very best in your journey and glad you are on this forum,we have quite a laugh and a bit of banter,very much needed when one is feeling low!Feel free to join on and take the mickey out of me when you like!🤣😂😜
Just change it gradually - if you've been wearing patch full time - you are likely to get a reaction...
Should have suggested that... but didn't know you were going to go full commando in one fell swoop!
One fell swoop being the operative word,nearly fell 🤬over🤬 a few times this morning.Maybe my patch is my comfort blanket eh?🤣Will wean off the patch just like the pred !Have a good day,mine is food shopping,where it all goes I don’t know as sure as hell I don’t eat hardly any of it!😜x
Probably vapourises into other people's mouths! At least only I eat what I buy when at home!! Very strange here with my daughter and partner - the amount of food they buy is mindboggling and done with no planning either ... Makes for creative meals though!
Guess there is a food monster hiding in my pantry!Just did a rough totting up of what I spent on rubbish thathubbieHAS to have,MIND BOGGLING!Mind you,my healthy eating fruits/ nuts/fish,Yoghourts look like I have spent more on me but hey ho,weight 1 kilo to go to reach pre pred and cholesterol creeping down!Just eyeing up the chocolate in the fridge now……………!🫣🤪😜🤣
I have a spot in my lower left corner in my left eye. I have no vision loss, just looks like somebody shined a flashlight , but my rheumo keeps telling me , you don’t have eye flashes with GCA??? Why do some just deny these issues?? And my teeth feel weird. Optho doesn’t see any optic nerve issues. But says you can get flashes when the gel starts shrinking in your eye.
Sorry to hear about your eye probs Given up.Mine are like fireworks all the time,gets on my blxxxx nerves at times but maybe,maybe I will get used to it!😜🤬
do you have vision loss or just flashes?
Sorry about delay,been shopping!In this heat!Yeh,I have vision loss in left eye,overnight occurrence!Still get the firework flashes 24/7(unless asleep of course!)Have what is termed as PL in blind eye.x😜🌞☀️🌞☀️
🙁. I know eyesight is important to everyone, but I am so afraid because I am an artist/ photographer….so sorry you lost sight!
Try and stay positive,very hard I know where eyes areconcernedjust try and remember the warning signs,Have you had eye scans ets to put your mind at rest?Only a thought,but if you are stressed are you subconsciously grinding your teeth,that could make your teeth hurt.When I had the jaw claudification it mainly hurt when I tried to eat.Could you not ask to see another Rheumy if you are not happy?I sound like a counsellor but I really don’t know what Iam talking about half the time,just going on my own experiences! Chin up!x😜🌼
Went to the ophthalmologist , he doesn’t see any swelling but I’m having a scan on Friday. ..🤞
Good for you,just try and stay calm and positive,hopefully the scan will put your mind at rest.Just take it as it comes!I know for a FACT that if I get stressed etc,I get all manner of weird happenings and pains.Good luck for Friday and let us know how you get on.xx💐🤞🏼
Not sure Rheumy can categorically say that.. it might not be high on the list but that doesn't mean it doesn't happen.
I think some of them are just so ingrained with the previous notions of GCA, that they don’t consider anything else! 🫤
Absolutely,we end up trying to teach them!😜
Like the other discussion this morning about "can't be PMR because it doesn't fit our view" - sounds potentially PMR as a part of GCA to me. No one size fits all on this forum ...
Very true..
Hi Angelsmummy, yes it is disconcerting. I have a tiny amount of sight left at the top of one eye. The first ophthalmologist I saw, said my brain would adjust, and this was repeated by others. I lost sight over seven years ago and still have problems with depth perception and double vision. Finally one doctor said occasionally the brain did not adjust but in most cases it did. Do hope yours is one of those cases.
Good morning crafty granny,firstly,Thankyou SO much for replying to me….sorry to hear about your sight loss,guess it was GCA like me?You are right,it is very disconcerting,I tried to not wear eye patch as much,to let brain adjust,and to not get a lazy eye,but cannot tolerate it too much.Makes me nauseous,and off balance.Like you my depth perception is quite a bit better but still struggle with lots of things.Hopefully time will help eh?Like you,the double vision at times is a bit of a nuisance,mainly when I am tired .As I said in my post,sometimes I wish the tiny bit of light in blind eye would go but don’t think that is going to happen any time soon!Just very,very grateful that I have sight in right eye,even with the macular degeneration.Dont think I will ever drive again ,would not have the confidence,and not sure if my field of vision would allow me anyway.But onwards and upwards eh,make the best of what we have got even if we do feel cheated at times!!🤬🤬🤬😱😢 There is one thing that I am grateful for and not sure if you ever had it,”Charles Bonnet Syndrome,think I have the name right!I was lucky that I only ever saw lovely animals,cats,dogs but got to say that when a small pony entered the equation that was weird!!🤪🤪🤪Really thought I was ready for the funny farm until the RNIB put my mind at rest.Only had 3 visions of that over in the last few months so guess the brain is telling my eye to work as normal!Pity my brain won’t work as normal!🤣🤣🤣xx🌼😜
Hi Angelsmummy, yes it was from GCA. I haven't heard of Charles Bonnet Syndrome, sounds like some sort of hallucination. Bet you were glad when you found out you weren't ready for the funny farm. Life can be a strange experience, can't it? As they say, onward and upward. All the best. 😵💫🙄😄😀🌸🌸
And to you!x💐
Hi to everyone.
Firstly thank you to Dorset Lady and PMRpro for all the information they have provided for me during my GCA journey. Fortunately my eyesight problems have been frightening but temporary. Recently I lost the sight again in my right eye, but this time with no double vision. I was diagnosed with a ‘dry’ eye, of unknown cause. The only thing the optician could think of was that I had managed to sleep with one eye open. I was given lubricating medication and within two days, my sight was restored. I have not read of anyone on this forum who has ever mentioned something similar. My sight is now fine.
I read of your respective journeys and I send you all my best wishes. Your messages and humour have helped me to feel less isolated. Good luck to you all.
Thank you!
However, more people would see this if you posted it as a new thread in its own right rather than in the middle of an existing thread,
Hi GML 19,glad all is well with you now!As you say,humour helps us all on our way,though today is an off day for me so am afraid humour is on my “ to do” list.Take care,x😜😰
`Ditto to PMRpro’s comments….and good sight is okay…
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