LUPUS UK

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Transient Ischaematic Attack (TIA) or Lupus?

Last Saturday I temporarily lost vision in my left eye for about 5 to 10 minutes.

Whilst having breakfast, my left eye felt like it had one of those spots you get when you look at a bright light. It lasted for a bit so I tried to blink it out as you do. But it wouldn't go. After a while it seemed to get worse so I covered my right,then panic! I had lost vision and could see only grey apart from one tiny pin hole bit of vision in the top left corner. To say I panicked is an under statement. My wife said she's never seen me like that! I didn't feel ill, didn't have a drooping face. Apart from the loss of vision, everything else was fine. I was in fact planning on going swimming with thr kids!

My wife put a cold damp cloth over my eye and after a few seconds the vision returned. I called 111 and was sent to A&E. After 7 hours of waiting (a long story and an official investigation as to why it took so long is under way)

my ECG and head scan were fine as were the bloods but I was told it could've been a TIA. They oddly didn't even check my eyes!

but I did have an opthamology appointment which had been booked because of the plaquenil on Wednesday and they couldn't see anything wrong with my eyes.

the official tests have now started to determine if it was a TIA or something else. They're looking into whether it could be something Lupus related.

Has anyone had anything similar due to Lupus?

And this in the week my Lupus docs were happy with the lupus to the point they reduced my mycophenolate

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SurferGuy

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Don't always blame lupus and if it happens again, don't waste time with 111, straight to 999. What you are describing, amaurosis fugax, CAN be a symptom of a stroke or another autoimmune condition called GCA, giant cell arteritis which is quite specific sort of stroke where blood supply to the optic nerve is stopped. If that is the case - a sudden onset - the eye people might not see anything, they would if the blood flow had been slowed over any length of time as the optic disc on the retina would be pale and swollen but not always when it is sudden. There is one form of GCA that appears out of the blue, just the vision loss, though usually there are other symptoms including headache as a warning. If it happens you need immediate medical attention because it can lead to irreversible loss of vision in one or both eyes. It is a medical emergency.

Hope it never happens again

Thank you so much PMRpro, your reply has been incredibly helpful.

From all the Dr's I've seen so far - A&E, stroke clinic and opthamology, not one of them has mentioned GCA.

I did a bit of research into this and read that a sign of GCA could be pain and tenderness around the eye socket. I had this a few days before the incident.

I mentioned this to all the people I saw and they took no notice of it at all.

IF it is GCA, at least I know I'm on one of the meds recommended - prednisolone. And I'm picking up some statins and another medication on Monday, where they'll also do some TIA specific bloods. I can't believe these bloods were not done when this first happened, nor the neck scan.

How you presented isn't typical - or what they think is typical which really only appears in textbooks! Hope they find something on Monday. But if it happens again - no waiting, 999 and more pred is the first thing to do

As in not a typical TIA or GCA. The opthamologist was thrown by the fact I had a pin hole bit of vision. He thinks if it was a TIA I shouldn't have any vision at all.

And hopefully there isn't a next time,but if there is, 100% it's gonna be 999

As with GCA, a TIA can cause different forms of visual symptoms. Why are people so keen to say "can't be x, y or z because the symptoms don't fit MY idea". It may be LESS LIKELY but that isn't the same.

Yup. They're all scratching their heads as to the way in which it all happened and are finding it difficult to see it as a TIA due to the symptoms (loss of sight but no signs of feeling unwell, dizzy,headache) and time line (loss of vision for only a few minutes).

Monday couldn't roll on quick enough!

Hi this happened to me but then a while later it was followed with loss of speech very temporarily. It was a TIA and the stroke clinic said I was not a typical stroke candidate ie don’t drink smoke or over weight etc so they said it was possible a silent migraine but still did all the tests just incase.. all scans came back fine but blood tests (done 3 months apart 3 times) concluded I have APS (Hughes Syndrome) I am now on warfarin for life. I also have Lupus SLE which I take hydroxychloroquine for.

Bit if a shock at first but I’m now grateful to the TIA ‘warning’ as I am now on medication to reduce catastrophic risk.

I hope you get to the bottom of what caused yours. Take care

Thank you BobbyDoodle. And glad you're feeling better.

So was it a TIA you or silent migraine? Have you had any similar occurances since?

Yes it was a TIA… the specialist said silent migraine was a possibility and then when he did all the tests he said thank goodness we didn’t leave it to assumption and we did the tests! I have had no re occurrences as I have been on warfarin since so that reduces my risk.

I shouldn't read messages first thing in the morning. My brain's still not functioning LOL!

So was the Hughes Syndrome caused by the TIA? Or something you've had previously?

APS might have caused your TIA. Antiphospholipid syndrome (APS) is another autoimmune disease which can often occur in lupus patients. It makes your blood more liable to clot, so can cause TIAs, heart attacks etc. You need testing for it if they think it’s a TIA, or actually even if they don’t think it is, just to be on the safe side. TIAs should not leave any sign behind so it can be difficult for doctors to be sure it was a TIA.

Thank you jumper. I've added this also to the list of possibilities so I can ask when I finally see a Dr.

I was again at hospital.this morning to give the bloods that should help detect what has happened - over a week after the incident!

Talk to the Doctor and ask about GCA-Giant Cell arteritis. It inflammation in the optical nerve. Eyesight gets blurry and also very serious as can loose site. Medical people and opticians socialists are not familiar with it. We only had it confined she had san to rule out TIA but after several days the GP picked up on inflammation markers in the blood. Was put on high steroid which stopped the pain and got problem Under control. It’s auto immune condition so all in the same spectrum as SLE etc.

Thanks Amy. Who do you know who has it? I was checked by an opthamologist last week who couldn't see anything in the eyes that could've caused this, but when I finally see a Dr I'm definitely going to ask about the possibility of GCA.

Ive been constantly thinking and worrying about this and realised that about 2 or 3 days before this happened I had 2 dizzy spells. They only lasted a few seconds so I put it down to the 40 degree heat we had and me sitting in the loft room which was a sauna! Now I'm thinking whether the dizzy spells were a warning sign!

It was my mother. We even saw an eye consultant who said nothing wrong he could see and told us to get ears checked. Luckily our wonderful GP, looked at blood test results from the hospital from the previous weekend and straight away saw extremely high inflammation markers and diagnosed GCA. We were sent to hospital straight away and the consultant put her on 60mg of steroids and almost immediately eye sight improved as well as head pains.

Good luck.

I haven't a lupus diagnosis but it has been suggested due to an abnormal blood test. I had a visual disturbance last March and for about 5-10 mins lost some vision. I was seen be a stroke consultant who after several investigations said that it was likely to be a migraine aura without the pain. There wasn't any indication of a tia. 2 days ago I had a similar occurrence. I didnt have any other symptoms. An aura migraine can be caused by various things. I've never had them before but having talked to people they are more common than I expected especially as we get older. I dont know your age but hopefully this may help.

Thank you Villagelife. When you had your vision loss, was it complete loss? Or did you have some vision?

What can cause a migraine aura? As mentioned above, I'm wondering whether the extreme heat we've had could've caused this?

Hi Surfer guy, I see you are younger than me, Im 65. The time I had the visual loss which resulted in me getting a Gp appointment this is what happened. I thought I would get checked out especially as my Mum had an eye stroke aged about 70. I started with a fortification aura which is like a zig zag shimmering light, gradually I lost my central vision in 1 eye, I tried to read my phone but couldn't only read the edges nothing central. This probably lasted 5 minutes. The one I had a few days ago was a zig zag bright shimmering light in both eyes, it lasted around 20 minutes, I didn't lose my vision although it made for uncomfortable reading. I didnt have any pain either times. My daughter-in-law aged 32 gets exactly what I have described but hers is followed by a painful migraine. I think stress, extreme heat and changes in barometric pressure can cause them. Hope that is helpful and everything goes well for you. If you are uncertain about anything you could always ask 111 advice.

Thanks Villagelife. It's very helpful as I was thinking about the extreme heat possibly having been a factor as the thermometer in my loft room a few days before read 38 degrees (the day of the record temperatures. My eye incident was on the Saturday so about 3 days later. I totally forgot to mention this to the Dr.

Glad that it was helpful. If you do have concerns though its always helpful to ask a professional.

Whoops! Sorry, I forgot to mention my age - I'm 46 😊

Sounds scary indeed and quite a shock for you...

TIAs are often diagnosed when you exclude the major things like a stroke, bleed, cardiac etc. There really isn't a test you can do to show a TIA as it resolves before permanent damage occurs when it happens. Risk factors as well like T2DM, HTN etc. You were FAST negative as well. And stroke usually if they affect the eyes causes a hemiplegia, so loss of visual fields on one side. So right and left eyes can't see the right fields of vision etc.

Could be silent migraine esp. with the heat of late as well. And if an eye issue, urgent same day appointments at the opticians are also a go to because they are often better than the docs in ED. We can't do the testing they can. They can take pictures of the back of the eye and visualise the optic nerve as well. All sorts of eye issues can have temporary visual disturbances as you mentioned above. Even if it was good the week before, opticians is ideal for any acute issues with eye that could be going on.

GCA as people have mentioned, usually, not always have higher ESR and higher CRP, with temporal discomfort. Diagnosed by temporal arterial biopsy. It could be a host of things really. Sorry you had to wait a long while in ED, sometimes how every much we try, myself working in ED can attest to , we can't manage to see people in the four hours, whether due to understaffing, people with higher triage levels, acute emergencies etc. It's a real nightmare everywhere atm. Every other day we are having major incidents, code black, for no space in the hospitals, and for understaffing and then have to somehow deal with traffic incidents, offshore fatalities, etc.

I really hope they find nothing seriously wrong. Keep cool and well hydrated and as people say if it happens again seek help asap X

All the best

Lottie

LottieLou96 you absolute Star.

You most definitely do not need to apologise at all. What you guys do in hospitals is beyond words. Honestly.

I was only this afternoon discussing with my manager how difficult it must be to work in a hospital with all the cuts, restraints, shortage of staff - the list can go on and on! I have nothing but admiration.

My grumble was with the manner in which protocol and guidance was absolutely overlooked in every way and the checks and treatment that should've taken place and given weren't. I hurt so much to see what I saw that day (after I got my vision back of course LOL). The hospital was in a mess in every way possible. The staff were so incredibly over worked. It hurt even more so to then see just how rudely Dr's, nurses, security guards, receptionists were treated by so many patients. It was disgusting. I stepped in on one occasion as it's my nature to not accept poor behaviour and injustice. My goodness it worries my family when I do this, but it's me. And they understand this but still worries them in case someone retaliates one day.

But that's done now and I have to move on. And your message here has been so informative and helpful and I will take this away for guidance for me going forward.

Now, what's "FAST"please?

I had a full eye check last Thursday where they checked the back of the eyes as well and that came out all fine. I'm now just waiting to see a Dr and have been told this could take 2 months. I've also been given 2 meds which are Clopidogrel and Atorvastatin. won't need to take for too long I hope!

PS which country do you work in? Language makes me think US.

Thank you so much again

Haha attempt two after my battery died in my overly long replying haha.

Nah, I'm not American, I work in bonnie Scotland, and I'm all too familiar with the highs and lows of the NHS. I can only speak for where I have worked but elsewhere I too have witnessed some atrocious substandard healthcare. It really depends on your luck of how they run and the pressures they are under.

Our quota is a minimum of one patient every 40 minutes, and to make sure they are admitted or out the door within four hours. Admit 30 percent and discharge 70 percent. But it really doesn't always work like that. And we have been in code 'black' for weeks so no beds at all in the whole hospital so no movement and we are having to use offices and other rooms as like a mini ward, for those unable to get up to the ward. Whilst dealing with trying to get through the influx of people. The winter wards haven't closed yet. And the demand for healthcare has risen in fact. Some of it the lack of gps seeing people and lack of community care, other times major incidents we can't predict.

It can be hard but we must not cut corners or give substandard care. Sorry you have had to witness and be on the end of bad care. It really can be potluck. Unlike surgeries who can close clinics and delay surgeries for us the ED is always, and has to be open, it is a legal requirement. My own department this week put in a letter to the local MP and NHS Grampian committees and health sec to state the problems. How can you run a department on such few staff, it's worse in the long term, as they have to pay double to triple when they fail their auditing for junior doctors. And that could've been spent hiring more juniors or another senior.

The bed issue can't resolve as we get rid of more beds each year. Even though our population and need for medical care increases. Honestly I could go on all day...hence why my phone ran out of battery the first time writing this reply haha.

To answer your qs, the simple FAST test is face, arms, speech, time for ruling out stroke. In ED and stroke units we use a much more advanced proforma. They've started you on the usual meds clopidogrel and atorvastatin for TIA. Again sometimes they like to be safe and it is a judgement call really.

But with those limited symptoms to the eye and one eye only, it does to me, don't take my word, sound like a TIA. The temp blindness of a TIA would be that of like a curtain down half the eye. As in the strange pic. But they are being cautious.

I hope truly, fingers crossed it doesn't happen again.

Take care,

Lottie

The visual loss typically in Tia/stroke

Goodness, if only everyone could see and understand what NHS staff face every single day. But having said that, the society we live in today, I regretfully don't think it would make a single bit of difference to many.

I said it before and I'll say it again, no words can describe how greatful I am for the NHS and most of its staff (I say most as I know of some and have had the bad luck of having been seen by some very poor staff who just couldn't care.

As for me, when I say I lost vision, it was almost all vision and not just half of it. All I had was a pinhole amount of vision in the top left corner. I have a GP appointment tomorrow as need to discuss the new meds. They have been making me go wee every hour at night and it's rather stinky wee too. Just want to make sure I should continue the meds as I also have lupus nephritis 😟

"if only everyone could see and understand what NHS staff face every single day"

They can actually - so much reality TV! There is a series called A&E after Dark - filmed in the raw at Hull Royal Infirmary to exemplify maybe one of the rougher ends of A&E life. It is very current with the present series having been compiled since Covid. Another is filmed in Barnsley A&E - a much less aggressive customer base it appears but very very busy, One from Stoke MTC shows the pressure of being a major trauma unit, And Ambulance is based in the London, Manchester or Birmingham ambulance service hubs depending on which series you choose. All are currently running on various terrestrial TV channels

en.wikipedia.org/wiki/Ambul...

And believe me - there is nothing added to the drama, exists all on its own.

Unfortunately, people seem to prefer Love Island, Big Brother and TikTok so will never know anything.

This is very true

Hello SurferGuy, I just saw your post. I wanted to share my experience with migraines with aura, although please continue to see your doctor to rule out other things indeed. It started maybe 8 years ago (I'm 46 now), it's occasional, I may get them 4-6 times a year (the migraines more often). It starts with "flashing lights" type vision, sometimes zigzags, but mostly big circles lights, which increase in intensity over a period of 15-30mins to the point that I can barely see. I need to take a paracetamol as soon as it starts, as otherwise I get a headache afterwards. I need to stop what I'm doing and rest then it passes, the longest it has lasted is 2hours. I'm very tired afterwards. I saw a neurologist back when it started who did an MRI, but ruled out anything significant but said it was migraines. Usually it happened a few days after something that has affected me, either an emotional stress (like a child at hospital for instance) or some physical exertion (like when I ran a marathon). Last summer, I was diagnosed with a PFO by a cardiologist, which is a small hole in my heart. apparently it's very common and not a worry in itself. But I'm told that the PFO explains the migraines with aura.

Hope you don't get re-occurences and that you get to the underlying cause.

LUPUS UK

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