GCA and visual disturbances

[knitmaster]

Hello, has anyone with GCA experienced visual disturbances for example shimmering bands of black and white light - I get short episodes of this from time to time and wonder if it is something to worry about.

[PMRpro Ambassador]

Do you have a diagnosis of GCA? Or are you asking about potential symptoms?

Either way - if you are experiencing ANY visual symptoms of that sort you must get it checked out asap. Visual symptoms of that sort can be signs of not only GCA but also other things which require speedy medical attention - TIAs for example, also known as mini-strokes.

I've now looked at your profile and see you were diagnosed with GCA in 2018 but are now down to a low dose. Do you have any other problems? Headache or increased fatigue or fluey feelings? Whatever - you do need to see your doctor as soon as you can.

[knitmaster in reply to PMRpro]

Yes, thanks, I have had GCA for nearly two years and have been reducing the pred now down to 6mg and apart from fatigue have been doing quite well until this month when I had two bouts of these eye disturbances.

[PMRpro Ambassador in reply to knitmaster]

As I say, you need to see the GP and your optician at the very least to get the back of your eyes examined. GCA can flare up again if you go to too low a dose.

[DorsetLady PMRGCAuk volunteer]

If you ever have visual disturbances with GCA, you need to get them checked ASAP.

[Blearyeyed]

Agree with the others any visual disturbances with or without pain , even years into your GCA treatment , need to be examined by a Opthamologist or optician eye exam and discussed with the GP and put on your record as soon as possible as it could be an emergency.

It may not be a Flare of GCA , it could be something else that needs attention though and different treatment or medication , including various eye or neuro problems and optical migraines ( these can cause visual disturbances with no pain , or you can get pain or coordination problems a few hours or days after them).

But , most importantly, it could be a warning Flare of GCA activity that may need an increase in your Pred dose again asap because you have still got some time in your individual experience of GCA before you are in remission.

Take care , and rest your eyes regularly through the day with less screen time as this can help.

Keep us updated with your results.

[FnF36 in reply to Blearyeyed]

Following diagnosis of GCA in mid-November I was immediately put on 40mg Prednisolone daily. I had not had any visual disturbances prior to diagnosis. Four weeks in to the treatment I experienced three episodes of visual disturbance during a weekend, the longest episode being about 50 minutes. For the first episode I had no pain and no warning, just a curtain descending with black and gold shimmering in my right eye and total sight loss. The two subsequent episodes in the same eye lasted about 10-15 minutes each, again with no warning, just a curtain descending and a dense grey fog dense with almost total sight loss. Fortunately vision returned to normal.

On the following Tuesday I had a scheduled appointment with my Rheumy who immediately increased the dose to 60mg. I remained on 60mg for four weeks before reducing to 50mg. I am currently on 30mg. I have had no further disturbances but it was impressed upon me that should they occur I should seek immediate - A&E - attention.

My understanding is that the disturbance is caused by oxygen not making its way to the optic nerve. Had I not had a scheduled Rheumy appointment I would have seen my GP.

I recognise everyone’s experience and management of GCA can be different but I am now more aware of the effect of disturbances, short and long term, and am prepared to seek medical attention much sooner in the event of repeat disturbances.

Keep safe and take care.

[Blearyeyed in reply to FnF36]

Yes , absolutely, the point is visual disturbances at any point in your GCA treatment need to be examined as it may be part of the GCA or something else which could damage your sight without attention.

As you say , oxygen deprivation to the optic nerve is the common cause of these disturbances and this can have a serious impact on your eyes.

Thanks for sharing your experience .

[PMRpro Ambassador in reply to FnF36]

One effect that is consistently mentioned in the literature is the sensation of a curtain across the visual field.

It is the oxygen deprivation to the optic nerve that leads to the irreversible damage that causes loss of sight.

[prunus in reply to Blearyeyed]

I read with great interest what you had to say about optical migraines. I did not know such a thing existed but I had a lot of these from the end of August 'til about the middle of October. Like you say there was no pain. I found them very upsetting. What causes them and what can be done to avoid them?

[Blearyeyed in reply to prunus]

There are various causes for optical migraines , both neurological and vascular or because of general poor eye health or , obviously if you have them it needs to get attention as soon as possible via an eye test and the GP. This is especially important if you have diagnosed GCA , or PMR , because there is a possibility of developing GCA.

While they make a decision on these things the Opthamologist or opticians testing becomes important . A most common cause of optical migraines is a short disruption of oxygen supply to the optic nerve . I will repeat again , that if you get visual disturbances of this sort they do need checking as soon as possible because symptoms of this sort can have long term sight altering consequences if it is not checked promptly.

Some short optical migraines can occur because of very simple things like a need to have glasses and a change in your eye sight putting more strain on the eye . Some optical migraines are caused by offer neurological signals misfiring in the brain confusing the messages your brain translates from information from the eyes.

The tests you will have done about optical migraines will include the more details examinations including visual field tests , tests for diseases and degeneration using various drops and retinal scans and photography. If you have these types of migraines you will often be sent for an EEG , to check brain activity .

You may need to see a Neurologist if there appear to be no causes that can be seen by Eye examinations alone. Sometimes you will have an MRI to check for causes in the brain and neck.

Sometimes no significant results are found to diagnosed cause , especially if you are already being treated for something like GCA by the time tests are done or if your migraines are not the type that cause lasting damage.

You will be offered migraine support and advice though . If these are infrequent you may be given a medication to take specifically when these occur. If you have a lot of migraines both optical and involving head pain and other symptoms you will be put on a daily medication to help reduce their onset.

There are also other migraines that involve no pain too . Some cause hallucinations or a change in perception of the size of things or your own body and severe vertigo, these are rarer , I have these , it's called , Alice in Wonderland Syndrome. More common are migraines that can cause blurred vision , nausea , mild vertigo , loss of balance and coordination and sometimes slurred speech and forgetfulness. If you get these symptoms regularly followed by intense headaches you need to have them checked and taken seriously.

Even if these headaches aren't bothering you now, and you have already had GCA ruled out , or had an increase in your Steroids , you should take the time to go to the GP to discuss what you have suffered and ask to be sent for opthamology testing ( have an optician/ optometrist check up in the meantime ) and enquire about a referral to a Pain or Migraine Clinic . The headaches may have stopped but they can come back without warning. They may not be life threatening and are not always sight threatening but if they come frequently they can have an impact on your everyday abilities without medical / drug assistance.

[prunus in reply to Blearyeyed]

Very many thanks for that in depth reply. It is greatly appreciated and has given me much food for thought.

[clieder in reply to Blearyeyed]

Great summary of a very confusing malady. When I asked my opthalmologist what brings them on, he could only say, "Stress?" Not sure I agree, but it was more like he was saying he didn't know. I went from three widely-spaced "normal" optical migraines over about 5 years to three in two days last fall. By normal, I mean a jagged cartoon bubble with a watery amoeba-like appearance that lasted for a few minutes. Then, moved on to vertigo upon rising and lying down for a month or so, then the migraines turned to double vision (like crossing one's eyes) just looking for baking soda at the grocery store and once while driving - scary. All of these lasted from 30 seconds to a maximum of a few minutes. None has involved headache during or following. So far, rheumy and eye doc rule out GCA, retina specialist is dealing with early detachment issues and primary did brain, head and neck MRI. All okay for my age and now treating BP that bounces around a lot with Verapamil. She says it has some merit in dealing with optical migraines and wants to give it a try. I've only been taking it for 3 days, so cannot judge yet.

Bottom line, I am so glad to see a discussion of this as it just doesn't ring a bell with most people. They leap to migraine headaches and have never heard of it as a condition of the eye. Prunus, keep us posted. With a diagnosis of GCA already in place or not, get this dealt with asap. This is not something to delay - any visual disturbance of that nature requires an exam that is through and varied.

P.S. Some other tidbits: Bright light seems to be a factor in generating issues. I find myself wearing sunglasses indoors in our sunny house when facing the windows and always when outdoors. I even wear them on cloudy days outside as the snow in Minnesota makes for a bright world even when it is gray. Also, I find that my eyes hold a bright object in its form for a long time after I close my eyes when there had been a lot of contrast as I viewed it, so something is slow to correct for the current circumstances. I was diagnosed with PMR and possible GCA as I had GCA symptoms at onset, throbbing in left temple and jaw claudication. Started me on 60 mg, prescribed 40 and down from there. I will have had PMR for four years in March, currently on 5 mg pred, lowest I've been is 4. Went back to 5 when all this started and have just stayed there awaiting a better time to start a reduction again.

[Blearyeyed in reply to clieder]

Ah , another retired rock star , I'm in good company , yes I look great in the supermarket or even a darkened theatre in my shades.

Photophobia is a key trigger , and believe it or not Phonophobia , my Tachycardia issues and occasional big swings of BP and activity causes both Head pain and Optical Migraines for me.

Other eye issues can increase them, including Dry Eye.

These are of course all different types of Stress so Stress is the common denominator. As Stress isn't just Negative things going on in your life but any type of activity both Positive or Negative , Physical or Mental that is beyond what your body can cope with at the time.

It is also possible , as you can tell from my experience , to have both Chronic Migraines and GCA at the same time and to need treatment for both.

That's why it's also vital for a GCA or PMR sufferer whom is used to Migraines of any sort , or Neuralgia , to have themselves checked , and, for Migraine sufferers to get checked if the length or style of their symptoms change because you cannot be sure which issue you are dealing with. Swift action saves eyes with many different conditions.

Thanks for sharing xx

[SheffieldJane in reply to Blearyeyed]

I found your post incredibly useful. I have had two episodes of what I can only describe as golden sparkles in symmetrical shapes. This is in bed at night, in the dark. I found it a bit scary. I thought it might be a side effect, connected to the Amitriptylin I was prescribed for my chronic headache. I now see that it is a symptom to be reported to my Rheumatologist on Wednesday, and my optician on Friday. Thanks yet again.

[Blearyeyed in reply to SheffieldJane]

And it could well be a part of the side effects of AmyT if it isn't for you in part as well. I was put on it to help with my migraines and palpitations early on , it can be a first line choice for Migraines with GPs and Specialists. My personal experience was that insomnia , headaches , including optical disturbance and dizziness increased with it .

It wasn't the cause of my Migraines but it did aggravate them for me. Although I know that this drug works very well for other people.

You can basically have Chronic Migraine before using certain drugs which should help it but the drug can make them worse.

I had the same reaction with Topiramate and had no relief ,or new side effects, with Sumitriptan. It has been trial and error for me because my headaches do seem to be connected to my Cardio / Vascular issues , again a rarer cause which many Doctors aren't very knowledgeable about. My Heart Medication has brought more relief than other medications , a long with another Medication and Self Care which helps my Autonomic Nervous system.

I still can't to normal physical activity without taking a medication to prevent rapid onset migraines from movement. I would say GCA also contributed to making my long term Migraine Condition worse.

All proof to me that when they search for clues about Headpain after ruling in , or out , GCA with appropriate and rigorous tests they need to look at the potential of our other health issues as the root cause, even PMR , as inflammatory conditions that cause pain in one area of the body can easily cause Chronic Migraines because of the Stress , Inflammation and Tension it causes.

[SheffieldJane in reply to Blearyeyed]

I need to have a plan B if all these tests prove clear. I still have a rotten headache and feel unwell. My first husband, who died young of Hypertrophic Cardio Myopathy had blinding headaches, he used to push his head really close to the fire. They were never diagnosed in his lifetime in spite of loads of tests. I reckon that they were a signal from his struggling heart.

[Blearyeyed in reply to SheffieldJane]

You are having an ECG and Echo are you or have you had one recently ?

You may benefit from requesting a 24 hour BP monitor which can get done via the GP you don't have to wait for the hospital . It takes BP regularly but also Heart Rate and that as much as my bigger tests helped to prove that the worst of my headache symptoms were linked to my Cardio changes.

If you are ruled out for GCA , stroke and other Neuro related problems from your MRI and Ultrasound it just means there are other options , the symptoms could still be related to your Adrenals ( even if they test as normal they can be sluggish ) but need extra support of their own keep plugging, you'll get there.

[SheffieldJane in reply to Blearyeyed]

Thanks Bee. I haven’t had these tests since I was diagnosed with PMR. There was a prolonged fruitless search for a diagnosis. I wonder if this is the run up to GCA? Not typical at all.

[Blearyeyed in reply to SheffieldJane]

One step at a time , just save all your energy for your busy week first and try not to think about it too much until you get to the point they decide on something. Good luck xx

[Hidden]

Could the black and white lights be an optical migraine? Here's a link to a picture of what one looks like: bambi-bell.com/2015/03/migr...

Do have it checked out by all means, but if it's an optical migraine, they're usually harmless but annoying. Hope that's what it is!

[Orpheus82]

Message for anyone with GCA. Please please make ophthalmology your first port of call when experiencing any visual symptoms. Even going to your GP, optician or rheumatologist is going to delay a full eye examination which should diagnose the problem as they will need to refer to ophthalmology. Anyone who has already been seen in their local eye clinic should be able to access it directly. Don’t take any chances with your sight.

[Cally55]

As the others say, get this checked out by a medic. It does sound a bit like an optical migraine, I get these from time to time and have always been told that they are harmless, they last from 5 to 30 minutes for me and I still find them quite alarming. I have had GCA since 2016.

Long ago someone on here posted a link to a whole collection of images of optical migraines many of which exactly matched mine, my searching abilities are a bit muddled this morning because of morphine for back pain so I can't find it!

[Globesaver]

Google "Ocular Migraines". I have had these my entire life and they are harmless from what I understand. Usually subside in 10 to 15 minutes with no side effect.

Good luck and feel better.

[HeronNS]

I'm with those who say see your ophthalmologist asap. If it isn't GCA (serious) or optical migraine (not serious) it could be some other eye problem (possibly serious). Best to get it checked by the eye expert.