Sight loss during sleep

[Nettejames123]

Doctors treating those with suspected GCA often advise the patient to call an ambulance immediately if they suffer sight loss but what happens if sight loss occurs during sleep and they wake up to find themselves blind in one or both eyes which is what happened to my friend? If blood supply is being cut off while they are asleep would there be anything to alert them to what is going on, e.g. pain?

[PMRpro Ambassador]

Probably not as far as I know. It is one of the most tragic results in GCA - because in the majority of cases there have been warnings in the previous week or so, often including transient loss of vision and other symptoms. On the other hand - there is a form called occult GCA where there are no signs or symptoms at all. Just waking up with no vision.

Part of the problem is that the headaches are the sign of poor blood flow in the brain - and if they are accompanied by poor blood flow to the optic nerve the damage may build up until eventually the nerve is so badly damaged it slowly dies off. On the other hand, there can be a sudden stoppage of blood flow to the region - and there may not have been symptoms before. It's a bit like the difference between angina and a heart attack.

[Nettejames123 in reply to PMRpro]

All very worrying particularly for those who have had symptoms which have not been picked up by the medics.

[PMRpro Ambassador in reply to Nettejames123]

It is - and part of what the charities and forums are trying to do - raise awareness amongst patients so they at least know what to do. I've sent at least 10 people to A&E over the years when their GP was being a prat - all eventually got a GCA diagnosis. The charity also has done a lot of work on getting a fast-track system rolled out - still far from perfect but it is coming.

[Nettejames123 in reply to PMRpro]

I did my very best to get my friend to go to A&E especially as I had an appointment that afternoon at the same hospital but she insisted on waiting for her appointment the following week! She then had several other appointments over the next two weeks, all the time suffering extreme headaches, being unable to eat because of jaw pain, feeling ill and continued blurred vision! She saw so many different "specialists" but, although they agreed it could be GCA, not one suggested starting her on steroids which is what I told her she needed. You can imagine my frustration and anger at seeing her deteriorate before my very eyes and being unable to do anything else about it. I will do anything to hasten the education of doctors, opticians, dentists, etc. but I need to know how.

[Tonylynn in reply to Nettejames123]

My wife has GCA. She only obtained urgent treatment because we arranged a private appointment with a rheumatologist. It should not be like this and I contacted the Central Commissioning Group (CCG ... look yours up on the internet) and asked why there was no fast track referral pathway locally. They are now in the process of establishing one.

[SnazzyD]

I'm rather embarrasssed to say that for months before my GCA suddenly blew up, I was waking up for a wee in the night and finding I could only see grey in one eye rather than black of the dark room. I did nothing about it. In my defence I was groggy and was tying not to wake up too much and by the time I had got back to bed it was ok. I remember thinking," oh, I've probably been lying on my right too long and the blood supply has been cut off". Never mind that it wasn't normal. I suspect no doc would have cottoned on judging by the reluctance to give anyone under 70 this diagnosis . I had no headaches either, but in the week up to GCA Day I was waking with a sore temple and by the time I'd had my morning tea it was ok. Also, as a nurse I was trained to know the obvious red flag symptoms of GCA if a patient said they had temple pain but knew nothing about details of the disease, it was so rare. Interestingly a GP nearing retirement recently said to me that he has seen 3 GCA in his career and about 3 PMR per year.

[CT-5012 in reply to SnazzyD]

Hi SnazzyD,

Thank you for sharing your experience. I too had the gray vision in one eye after reading. I mentioned it at the eye clinic (I have glaucoma) the doc said never heard of that before have no idea why that happens. Maybe that is an early warning that some people get but don't attach any importance to it, mine went away after a minute or so. Have only just realised that it hasn't occurred since I started pred. Thank you.

[SnazzyD in reply to CT-5012]

The other thing I got in the run up week that was eye related was when I was cycling. There was a very steep bridge and by the time I got to the top of it I was breathing very hard. I got black spots of no vision at this point , though by the time I was rolling down the other side, it came back.

[SnazzyD in reply to CT-5012]

It might be worth saying that when it did hit with the pain, after about 24h my long sight started to go, then I was getting tunnel vision. Within two hours of 60mg Pred the pain went and my eyes went back to normal. Rheumy did not rate these symptoms as typical for GCA but the Pred really was a magic cure and I've not had any problems since apart from Pred induced squiffy eyesight thatmy optician warned me about.

[PMRpro Ambassador in reply to SnazzyD]

I do wish they wouldn't say "not typical of GCA" - I have heard of all these things you have been saying over the years. There IS not typical sign - everyone is different.

[Nettejames123 in reply to PMRpro]

The fact is, in my friend's case she had all the typical symptoms except perhaps for the blood tests which apparently showed "nothing significant", whatever that means. Why they were looking at every other possibility without treating the most obvious I cannot imagine. I just wish I had ignored my friend's wish for me not to interfere and gone in with her to see the specialists and insisted they saw sense and started her immediately on steroids. I wonder also why she was advised to call an ambulance if she lost her sight again when that may well have been too late to save it. Anyway, as it happened while she was asleep that didn't apply and it was too late.

[Insight329 in reply to SnazzyD]

SnazzyD, fascinating story! Did you lose sight?

I asked my rheumy how many GCA/PRM patients he has. He said he has 10 GCA and approximately 30 PRM patients. (I'm in the States and all of my docs are part of a teaching hospital). My surgeon told me I was his 6th positive for GCA. He said his father (also a surgeon) is 62 and has never had a GCA patient. He also said that those in his department think he has the Midas touch on knowing just where to get the biopsy. Amazingly, both are probably in their late 30's, maybe early 40's. Rheumy told me that many GPs would never see the diagnosis in their career and thus he wasn't surprised when my GP missed the diagnosis -- thought it was my blood pressure causing the headache. It's fascinating in a sure-wish-I-didn't-have-to-know-this way.

[SnazzyD in reply to Insight329]

Apart from my nightime episodes no. It was just an increasing blurriness and narrowing of field of view that was accelerating in the last two hours.

[PMRpro Ambassador in reply to SnazzyD]

Which I suspect means he doesn't know what he's looking at when his patients come in and he tells them they have "old age" or OA. PMR is the most common rheumatological disorder in over 65s. GCA IS very rare and that he'd only seen 3 cases doesn't surprise me - but there are still large numbers of people who lose their sight every year. To be fair to the GP - they probably had had symptoms and ignored them instead of going to ask. One lady posted on one of the forums some years ago that she had had loss of vision for half an hour while on the phone talking to her daughter! Me? I'd have got off the phone to the daughter and dialled 999!!!!!

[Nettejames123]

Interesting! How is your sight now?

[DorsetLady PMRGCAuk volunteer]

Hi,

The answer to that is no!

I went to bed with partially blurred eye, and woke up next morning with it completely blurred! Gone for good. Blurring had got worse over three days, but no pain in or around eye- nothing! Very scary.

And I had previously had classic GCA head pains etc which hadn't been picked up by GP.

[Nettejames123 in reply to DorsetLady]

So sad and so unnecessary. This friend had blurred eyes for over two weeks along with so many other symptoms. Can't believe they didn't resalize the danger in leaving it untreated.