eye problems

[MaryH]

I keep seeing large floaters and yesterday I feel asleep in a chair and as I woke up I saw a baby bird landing on the cupboard, when we looked there was nothing there I know this sounds crazy but has anyone else had this sort of thing

[Lure2]

Hi MaryH,

I wonder if you have now found a Specialist of autoimmun illnesses who works with Antiphospholipid-patients like us daily. We need such a Doctor. You spoke of your GP.

Also I know you were at an INR of Warfarin between 3.0 - 4.0 some years ago. Some of us need to be rather high in INR. Even though you and I are about the same age I must keep my INR between 3.5 - 4.0 to be without symptoms and to remain well. We very seldom bleed from this illness but clot even if it is easier to bleed when elder. I have never ever had any bleed. Not even at the dentist. I am 75. Of course I test my INR by selftesting so I never let the blood get too thin.

Do you still have chestpains also?

I have also had neurological symptoms and when we are not at a steady level with the Warfarin we get those symptoms back. I think you should ask your Specialist for a referral to an Ophthalmologist which is an eye-doctor who sometimes knows about APS and also Sjögrens. As you know these autoimmun illnesses can often go "hand in hand" and be difficult to separate from eachother. There is also where a Specialist of autoimmun illnesses will be needed.

[KellyInTexas Administrator]

Hello, Mary.

Yes, I have had similar neuro/ visual disturbances.

I have just has a quick read over your previous posts.

I note that you are approximately 73 years old , history of stroke, INR set at 3.5-4.0, and diabetes.

These are the Main things that grab my attention.

As this goes without saying... ( I think we all know this on here- no one should ever depend on an on line forum to replace quality medical care that is custom tailored to you.)

The main value of this forum is gathering general collective knowledge as group of people who all have the same disease .

This is where I hope to help you now. I will now offer up a few thoughts .

1. Visual agnosia. This is a glitch the brain makes when these is a problem. Mine does it due to Temporal lobe epilepsy.

2. Visual confabulation ( we all do this. Our brain fills in the rest of the story- with astounding accuracy- that our eyes see. This way out brains don’t dave to do so much “data processing “ and can get on to other necessary tasks. When our brain or brain / optic nerve ( or maybe eyes- I’m not sure about that- could be- ) we incorrectly , “ visually confabulate.”

I have personal experience with both of these phenomena- and my neurologist- and neuro ophthalmologist have explained it to me- so you are getting my interpretation ( second order) as a lay person from them.

I have several diagnosis here that would potentially cause this- ( here are just a few- only the ones that would pertain to the visual disturbances.)

1. Temporal lobe epilepsy ( partial complex seizures)

2. Optic nerve atrophy ( quite severe)-

3. Cerebral venous sinus thrombosis

4. Visual agnosia

5. retinal embolus

Are you having trouble with not finding words, or saying the wrong words?

This is called aphasia.

I do think you need to call your doctor, maybe today, especially with your history of stroke. That would be the real concern, but I trust you know the symptoms?

You might mention my experience to him/ her -

Temporal lobe epilepsy is not terribly uncommon with APS. I believe it’s about 10 fold more prevelant than in the standard epilepsy population, which is roughly 1% of the general population. If on the very off chance this is what’s going on with you, ( would need to be verified by EEG), anticonvulsant medication can be added easily with great success. I take 300mg topirimate daily and it also is good for helping with cluster migraines.

[lupus-support1 Administrator]

Mary,

Floaters are normal! Unless they almost cover the entire eye! As we age, the eye can dry & we can experience a "floater" which is in one fixed position & moves when the eye moves! This is not really a floater

Having said that, when was the last time you saw an ophthalmologist, ie a medical doctor, not an optician?

Rather than post, go to your GP & ask for a referral.

With good wishes,

Ros

[Elfie1]

Hi Mary do you also see flashing lights especially in the dark? I had lots of floaters and flashing so went straight to the doc. who straight away sent me to the hospital ophthalmologist who diagnosed P.V.D.(posterior vitreous detachment). I think you should see your doc. to be on the safe side. All the best Elfie

[MaryF Administrator]

Hi, it would be a very good idea if you could ring and get an appointment with your GP as soon as possible, this should be he case for any new symptom, or symptom that has worsened, hopefully they will then make the correct referral for you to be checked out as soon as possible. I hope they can sort you out and give you some advice in the meantime. MaryF

[GinaD]

Before I started on warfarin I had floaters and visual confabulation. A stroke had damaged my visual cortex and so my brain filled in the parts I (or it? -what pronoun do I use here?) could not analyze. The most striking was when my daughter saw a flag being flown on the radio antenna of a loud, broken-muffler car. I saw a man on a motorcycle, kneeling on his seat, one foot in the air with a colorful boa flapping in the wind behind him. I was concerned that the boa would become entangled in something and strangle him. I shared this concern with my daughter, and from that point on, she prefers to drive. After a year on warfarin a visual field test showed that nearly all of my visual cortex had healed. I still wear separate reading glasses, but - no more dare devil motorcycle riders with colorful boas! ( Why on earth did my brain think that the boa on the motorcycle was a more logical interpretation then a flag on a run down car???)

[MaryH]

Thank you to all who answered my questions regarding visual disturbances (baby bird etc., !) On a lighter not my husband was having a nap in the lounge and I had been resting in the back room. I flew into him and said about the baby bird, he then spent the next half an hour looking for it. Poor man, he knows I have dreadful nightmares but he really thought I had seen it, so did I. I shall see my GP and once again, thank you all for coming back to me so quickly . This is a truly wonderful site. Love MaryH

[KellyInTexas Administrator]

I saw my friend Carol ( who is real) who was in visiting for a week in mid June ( which is true- this is reality) standing at my kitchen sink. ( this was in fact real.)

My husband and son were traveling abroad for a month- so I had friends rotating staying with me.

Nothing unusual here... I had unpacked groceries and made coffee for us. ( true. Real.)

She was rinsing off asparagus. It was banded together at the bottom with a thick blue rubber band. ( this apparently was a visual hallucination. The asparagus part. ) she came to the kitchen island to join me for coffee with freshly rinsed cherries.

The next day I searched and searched the fridge for that asparagus...😂 Had I not looked for the asparagus I would have never known that was not real. It was just a mundane everyday thing. How often am I doing this?

That’s when I found out I had hallucinated it.

My INR had been too low; I had also had a leg clot about the same time.

My neurologist may change my anticonvulsant.

[Agent-J in reply to KellyInTexas]

I had the posterior vitreous detachment about one month prior to my first (and currently only known) DVT, and subsequent APS diagnosis. Are there any tie ins between the two?

[KellyInTexas Administrator in reply to Agent-J]

That I don’t know. Do you have a really good neuro opthomologist?

[Agent-J in reply to KellyInTexas]

I have an awesome ophthalmologist. I would not have thought about any links until seeing this post. Plenty of floaters. Then the PVT, end of December beginning of January. 2 Feb DVT... I will ask the ophthalmologist.

[KellyInTexas Administrator in reply to Agent-J]

I have to wonder if you might have had a little bit of swelling with the formation of the clot that cause it. I’d be curious to know.

[jetjetjet]

interesting - i have seen like flashes of things -- a blur -usually out of the corner of my eye -- this has just started in the last month maybe . So very weird that this issue comes to light here now !! Thanks - i have an eye doc. appointment next month the 6 TH so i am going to follow this closely -- my age and meds maybe a issue here also .and where they are NOT in my whole inner field of vision and just on the extreme left OR right and last half a second ?? any more info out there on a like issue like mine - i wouldn't see something right in front of me . {not yet } did your problems start with side vision issues may I ask . ??