I tested positive APS back in 2003. I had gone to the DR because of Visual migraines. Anyone else have these? No pain just weird vision

[bluemax01]

They usually last about a half hour and I can feel them coming on. Aspirin clears them and prevents them. I have since lost the upper vision in my left eye...

[Lure2]

Hi,

I had no headache but Auras in the beginning 1995 (about 20 min).

I got a TIA 2002 (could not feel the right side of my body not even the right side of my tounge) and was on Aspirin 75 mg. I was quite OK for some years till the operation of the Hyperparathyreose. After that op 2006 more visual problems continued with Vertigo, doubleseeing.

They suggested I could try warfarin but I hesitated then. Continued with stabbing pain for some seconds in the head. I could not see the lower vision in my right eye for some minutes .When my neurologist heard that she insisted that I should be on warfarin. All the other doctors also. I am trippel-positive with high titres of antibodies.

I started warfarin in 2011 and all the symtomes disappeared but I have still some Auras.and some dizziness also after leftsided Otolitdamage.

Go to an oftamolog (eyespecialist) . Perhaps you are not well anticoagulated.

Hope you have an APS-doctor that understands this rare illness. Take care.

Kerstin in Stockholm

[Lhrlovesmar in reply to Lure2]

Hi, Kerstin this is LeRoy. I have Antiphospholipid Syndrome, I was diagnosed with APS (although I have had the antibody all my life) in 2002 after my eighth blood clot. What you are experiencing is not unusual for someone testing positive for the APS antibody I have had (and still do) times where I lose my field of vision in my right eye, (so far this has only affected my right eye). It's like a blanket slowly goes over my

entire field of vision is black. as soon as this happens, it starts to clear up. This happens occasionally. But, one day I was in the car and all of the sudden both eyes the vision is all jumbled-up, I had to pull over until it cleared-up. If I were you I would mention it to your auto-immune doctor.

[Lure2 in reply to Lhrlovesmar]

Hi LeRoy and thank you for your answer.

This was before I was on warfarin. After warfarin no eyeproblems. Do you still get this in your right eye (I also had the right eye) ? I thought you were on warfarin ?

I have a reumatologist and a hematologist and do not need a neurologist after warfarin in 2011.

Have a nice day and thank you. Kerstin in Stockholm

[packerfan]

I loose my vision for a short period of time, usually about two or three minutes and only in one eye the left. not sure why it happens or when it will happen but if it happens while I am driving I always pull over and stop until my vision returns. when it happens it is painless but scary. hope yours vision loss is brief, painless and it returns after a short period of time. vision doctor does not seem concerned.

[GinaD]

AHHHHH,you remind me of old friend, The Psychadelic Gummy Worm. He used to appear right in the lower center of my vision and if I wasn't driving and focused on him (her?) he would change colors From one vivid tone to another. His visits began to decrease after I went on warfarin, and it has been years now since he last imposed himself on my vision.

Scary, yes. But I always try to find something to laugh about in any scary situation and The Psychedelic Gummy Worm was a funny one.

But do take heart. Proper treatment can return your vision to normal and some patients do recover from impaired vision.( I did.)

Gina

[Elaine77c]

I get aura but no pain - I still get quite a lot of visual disturbance but a lot less since combination of Warfarin and Topiramate - you might want to ask your GP about the latter?

[Lure2]

Aura is one thing. Sometimes it can be headache afterwards. I do not have that. Auras do not always go away with warfarin. This is a sort of "migraine". For me it was not scary.

When you can not see on ONE eye (upper or lower part or the whole eye) it is more scary. These are "amaurosaattacks" I have been told and can be microembolies. Even the vertigo is microembolies and probably need anticoagulation. These things said by specialists here in Sweden.

This is me and warfarin helped me but I am not a doctor and I only say what the specialists told me.We have "sticky blood". That is why and we are all unique but sometimes with a bit similar symptoms.

Kerstin

[bluemax01]

Thanks So much for the replies. I have permanently lost the vision in the upper left eye. I take a baby aspirin everyday. I have not been to the RA in about 8 years now. Originally when he told me I had APS , he called me later and said, "you tested negative for LUPUS". I never heard from him again. No follow up on the APS. So, I have been taking the aspirin and now have an appt with a new RA next week.. I also get very fatigued now and then. Not sleepy, just feel beat...

[Hidden]

Is aspirin helping you, bluemax01? I was put on the same when my heart started to go wrong.

I often think it's circulating antibodies/immune complexes..I've been to eye doc numerous times since 2013..you know APS & neuro association. You may have a perfectly ok set of eyes but it's neurologically going wrong. My observations anyway..antibodies are dangerous/hazardous based on what I had been told. If you have APS, you probably have other autoimmune antibodies (as I do)..eyes/brain are commonly affected if not in everyone.