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Discussion Starter #1
Hi Everyone,

I hope you all had a nice holiday.

Back in 2005 I lost vision in my right eye completely and this lasted about 1 hour. It was as if someone pulled a shade down over the eye. Other then issues with blurry vision from time to time I have not had any other big issues until this week and what happened this time was different.

I was in my kitchen preparing my meal and out of the blue my vision went crazy. Everything I looked at appeared to be melting in front of my face. I did not loose vision at all yet I had severe visual distortion. It scared me so badly as I did not know what was happening.

It did not last long, maybe 5 minutes at its worst but since then my vision has really not been good. It is blurry most of the time now and my eye lids have become very red in color as if I put on eye shadow. I am sure the red eye lids are NOT related in any way to the visual distorting I experienced.

I am wondering 2 things...

*Has anyone had this happen to them with their vision?
*Do you ever have issues where your eye lids become very red in color?

I am shaken to the core over this. My vision is perfect, 20/20 and it is the only thing I have that has not been a big health issue for me. I did the Amsler Grid test and passed it with flying colors.

Any thoughts or insight that anyone could provide would be greatly appreciated. I don't know if this has anything to do with it but my recent blood work did show a very low Iron Saturation level. I don't even know if this is associated with Lupus or not either yet it is the least of my worries right now.
 

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Howdy Karol,
I have yet to have any eye symptoms as severe as yours. I do get "painless migraines" (a very unrealistic description), blurring and focus problems and if exposed to sunlight then all sorts of nastiness ensues.
I was, frankly, getting concerned since I read voraciously as well as watch TV a lot. At my regular appointment with the ophthalmologist I was relieved to be given a clean bill of ocular health. 'Twould seem that all my vision problems are related to the SLE and/or stress.
It was a most reassuring visit to a medico!
Perhaps such a step i.e. seeing an ophthalmologist would help you too.
All the best.
Douglas+
 

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That sounds scary

So, based on your message, it does not sound like you ever had the first episode addressed by a medical professional back in 2005?

I am with everyone else on seeing an opthamologist.

I did have vision problems once, but I had other things going on too, such as I became paralyzed for about 30 minutes on an airplane and lost the ability to speak. My vision didn't completely go away, I just felt like I was looking through the world through a haze. I ended up getting an MRI the next day, because my PCP was scared I had had a stroke, but my MRI was clean. They chalked up my experience to being an abnormal migraine.

What you described sounds a lot like optic neuritis. Obviously only an opthamologist, could diagnose that. It is believed that stress and or a virus can cause optic neuritis. While optic neuritis is something that is sometimes associated with other diseases such as MS, from my work, I know that half of the patients who come in with optic neuritis, have an episode once or twice, and it never returns ever again, and they do not have any future neurological episodes and they are never diagnosed with MS. Regardless of the cause and associated conditions, optic neuritis very very very rarely causes any permanent damage to the eye, from what I have read and been told by the neurologists I work with.

Hopefully, this was helpful.

I myself haven't been formally diagnosed with lupus, but I am taking plaquenil for a variety of symptoms that suggest that I have lupus and seeing a neurologist to try to figure why I occasionally have problems walking.

My Christmas was not my favorite Christmas ever, I had to postpone my Christmas dinner because I was in the ER with the worse migraine ever and could not stop vomitting for 12 hours. Here's to a better Christmas next year.

Hopefully, the episode with your eye never returns, and it can be chalked up to stress. But, either way, I think it is unlikely that this will cause you any permanent problems with your eye sight. That being said, I really don't think you should ignore this-and it sounds like for your own peace of mind, getting it checked out and finding out what caused the episode, is going to make you feel a lot better about things.
 

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Hello Karol

I am sorry you have such a scary experience and now have something else to worry about ((( Karol))).
It could be something to do with your APS or some vascular problem and it might be hard to say exactly what caused it even with thorough testing.
I hope you can get to see an opthalmologist very soon and hopefully get some reassurance.
Let us know please.

All the best
Clare
 

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Hey Karol,

I'm sorry to hear about your latest eye problems.... It must have been a very scary thing to go through.... :(

I have had a number of vision problems and vision changes from APS, including an episode of sudden unilateral vision loss about two years ago (that sounds like what you went through in 2005) where the vision returned 2-3 minutes later. The doctors at the time agreed it was something called amaurosis fugax caused by APS.

A family friend of ours has gone through something that sounds a lot like what you're describing a couple of times now. She has said it is a visual distortion that comes on suddenly and makes her vision "strange" like she's looking at things through a waterfall. She's had a brain MRI for this and gone to an eye doctor and neurologist and they both seem to agree that it is an atypical optical migraine. She has no permanent damage to her vision from this; her vision has always returned to normal immediately after each episode.

I'm guessing there is a chance that what you experienced might be something relatively "benign" (if one can say that) like an optical migraine; however since you have rather severe medical problems and have APS from which you have clotted it is crucial that you see a doctor and go through tests for this very soon.

Vision problems that come and go like that may seem harmless enough and may not raise our alarm levels immediately since the issue resolves on its own but they may be due to a range of things from warning signs of clots, to problems with the eyes themselves, warning signs of inflammation etc etc and thus should never be taken lightly.

I hope you've already seen an eye doctor or neurologist for this.

Do let us know how you get on... :)

:flowery:

Zoi
 

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Karol,

Good luck at your Neuro Opthamologist!

I hope that they come up with some answers to that scarey episode!

Take care good care of yourself and let us know how you get on!

Love Lesley
xxx
 

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Hey Karol,

Thanks for letting us know! Calling your neuro-opthamologist really is a wise move! :)

I hope he can shed some light into what went on!

:flowery:

Zoi
 

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Discussion Starter #10
Thanks Lesley and Zoi.

Since it was not vision loss but distortion instead I hope some light can be shed too. I will let you know.:wink2:
 

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Are you taking Lyrica? Although it wasn't really like what you had, I had a lot of trouble with blurred vision earlier in the year, capped by a large "floater" appearing in my left eye and an entire day when I couldn't see well enough to get on the computer or read. It turned out that the Lyrica was causing this as a side effect.

I don't really think this is the problem as the effect was somewhat different, but I wanted to mention it just to not discount anything that might help.
 

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Discussion Starter #12
Hi Jirel,

Thanks for your reply. No, I am not on Lyrica but I really appreciate you sharing this with me. It seems that my visual issues are vasculitic in nature and further testing will need to be done to hopefully pin point exactly what happened.

The doctor does not think the blood flow to the brain and optic nerves is sufficient. Interestingly enough the new G.I. doctor seems to think that my recurrent ulcers are due to the same problem......vasculitis of sorts.

Hopefully I will get some definite answers soon to all of this craziness.:eek:
 

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Hey Karol,

It's good to hear that you talked to the doc and that he's got some ideas on what might be causing the visual disturbance you experienced.... :)

Hope all goes well with the tests so that you can get to the bottom of what's going on very very soon! :)

Sending loads of healing hugs your way :grouphug2: :grhug:

:flowery:

Zoi
 

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KarolH,
Hi I have not had issues as bad as you but have had the blurry vision and the focus problems from time to time. I would be calling my eye doctor and making an appointment to see if it is the eyes or if it could be something else. Not to worry you but it could be something with the brain, so it is important to start the process of elimiting what is going on. It could be the stress of the holidays also. The body has it's own way of dealing with things that sometimes don't make sense to us.

You know what is normal for you and this does not sound normal to you as it does have you worried enough to post it. Please do start looking into it as would hate to have something happen that could of been stopped if a doctor knew about it. I wish you the best of luck with you vision, sight is a wonderful gift.
Tammy
 

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Thanks ladies. I am getting ready to go back to the Ophthamologist for a 10:45am appointment. They are going to do some tests and hopefully I will have some insight.

I will keep you posted and let you know upon my return home.:wink2:
 

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I thought an ocular or ophthalmogical migraine site might come in handy on this thread. I used to get these from time to time years ago but I wasn't especially health conscious in those days. These still pictures do not convey the sort of shimmery waterfall impression I experienced. I think mine probably came on when I was tired and stressed and most often on going from dark to bright light. I rarely have a headache and never had a migraine although I used to feel slightly sick when these occured.

http://www.allaboutvision.com/conditions/ocular-migraine.htm

Another more technical site is

http://www.gpnotebook.co.uk/simplepage.cfm?ID=x20040621234550089560

Good Luck

Clare
 

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Discussion Starter #18
I THINK CLARE IS A MIND READER OR HAS A REALLY RELIABLE CRYSTAL BALL.:rotfl::rotfl::rotfl:

My visual distortion was caused by a migraine that was not associated with any pain. He put a name to it but I can not remember what he called it. He said one eye problems are typically CVA or TIA related and both eyes are typically Migraine related.

He said that when this happens it can happen a lot and very frequent for weeks up to 2 months and then BAM......goes away and may never happen again or won't happen for many years.

I am relieved to know I am not with something serious here and I appreciate all of the support I received from all of the wonderful people here. I love you like your my family and thank you sincerely from my heart.
 
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