Scintillating Scotoma & double vision

[Bramble2000]

Hello, I realise this may well be impossible to answer but just thought I’d ask. Could Scintillating Scotoma’s and episodes of severe, fairly short lived, double vision be a sign of GCA? I have no GCA like pain, “just” PMR pain. I will tell me rheumatologist but as he’s about as much use as a chocolate teapot, there’s probably not much point. Happy Christmas to you all. X

[Sophiestree]

I get visual migraines and take some paracetamol just in case it turns into a nasty headache. A few on here also have had them, but perhaps under a migraine aura or visual migraine if you wanted to do a search. I can't see anything when they happen so just have to wait for them to go. Not sure that they are GCA related though.

[Bramble2000 in reply to Sophiestree]

I don’t get any headache with them at all

[Sophiestree in reply to Bramble2000]

No. I don't either, I just take them as a precaution

[DorsetLady PMRGCAuk volunteer]

When you have PMR, then any visual disturbance should be investigated and considered whether it might be GCA related. Sometimes it is, sometimes it isn’t.. but always best to check.

Please mention your doctor -is GP more helpful or do they demure to Rheumy as you’re under his care?

[Bramble2000 in reply to DorsetLady]

GP useless, not interested. How would a rheumatologist determine if it’s related to GCA? Scintillating Scotoma’s originate in the brain usually. I’m certain mine isn’t eye related. I’ll mention it but the rheumatologist won’t link them I’m sure. He’s useless.

[Sophiestree in reply to Bramble2000]

How frequent are they? What about an opthamologist, if you rang and explained your condition and concerns they would see you quickly. Or there are I think SpecSavers that give this service via the NHS. That might be an idea.

[Bramble2000 in reply to Sophiestree]

This isn’t an eye issue. It’s coming from the brain. I’ve had 2 in the last month. I had to inform the DVLA, which of course al anyone must who experiences this but it causes a great deal of hassle.

[Bramble2000 in reply to Sophiestree]

Also, in the last year, I’ve had a DVLA specific eye test, a regular optician’s eye test and diabetic retinopathy tests at the hospital. All completely normal so I’m sure this is coming from the brain. At least I think so.

[Sophiestree in reply to Bramble2000]

Understood, it was just a thought to alleviate your concerns. You are saying that you need to see a neurologist perhaps.

[Missus835 in reply to Bramble2000]

Do you have an emergency vision clinic near where you are?

[Bramble2000 in reply to Missus835]

I’ve had a DVLA specific eye test, a regular eye test and diabetic retinopathy. Nothing wrong. This isn’t coming from my eyes. I think it’s from the brain. I doubt it’s PMR related but thought I’d ask

[PMRpro Ambassador]

Visual symptoms should always be checked out - the GP or your local CUES optician would be better than chocolate teapots ...

primaryeyecare.co.uk/servic...

But the general opinion is that SSs are generally benign. I've not had one that I can remember since my migraine auras stopped years ago - and I have had 2 in the last 6 months or so!! 20 mins of zigzags and gone, no pain, so not really worried about them.

[Nextoneplease]

I get zigzags and flashes that are similar to what I used to have when I had migraines when I was younger. They pass in 20 mins or so and I put them down to stress/ tiredness.

However as you’re worried about your symptoms I do think you should see your GP or at least an optician who could refer you to Ophthalmology. Don’t ignore something that concerns you.

[random901]

Hi Bramble 2000. I have GCA but have also had ocular migraines since my teens. These returned when I was on high pred doses. My rheumy speedily sent me to Ophthalmology dept for a thorough check. Everything ok.

[harpsichor]

Throughout 2016 I had several daily episodes of scintillating scotoma, double vision, extraordinary shimmering geometrical shapes with triangles and other shapes. I also had pulsatile tinnitus. I had to stop work. Investigation in the ophthalmology and neurology departments of a local hospital proved fruitless. Finally I went privately to a neurologist who suggested I give up HRT. He thought it was hormone-related. I asked him how best to give up and he said, take it every other day. Within two weeks of taking it every other day (Livial) the visual disturbances had gone. I then found a Spanish study which found that a half dose was as effective as a full dose, and I continued to take Livial until two years ago. I hope you find what’s causing your visual disturbances, Bramble.

[Bramble2000 in reply to harpsichor]

Very interesting, thanks.

[GOandBuddy]

Pl note I am not a medic, but a fellow pmr, gca sufferer. Any eye disturbances should be reported to your consultant and or your optician. If your consultant is concerned, he will do a scan of your face and eyes. In my case where my eyes were affected, The arteries around my temples became hard and distended. You could feel them when you touched my face. The scan proved me to be a text book case of gca. At one stage I lost my sight. Thankfully this was temporary.

[JcDc527980]

Good morning Bramble

I’ve had GCA for the last 2 years double vision was the first symptom along with jaw ache I was very lucky my GP had seen GCA before she sent me straight to the hospital for tests. Please speak to your GP again if he’s no help I suggest you go to A&E if you get another episode.

[Cfmad298601]

I started having these 10 or more years ago, well before GCA. They seemed to happen a couple of times a year, no headache just bright dancing shapes for 10-15 mins. Mentioned to a gp who said probably nothing to worry about unless more frequent or pain too.

I did notice an increase whilst on high dose pred, they seemed to come in batches…..a few over a month or so…..then nothing for a few weeks. My Rheumy didn’t think it was an issue, but again keep an eye (no pun intended) no them.

Come to think of it I haven’t had any for months now…….