It’s like a Stroke In Your Eye

Branch Retinal Vein Occlusion, That’s a phrase I had to learn in October. It’s a fancy term that means a person has a blood clot in a small retinal vein. I know this, because I have one. It’s not that uncommon in elderly patients. The problem is it happened to me when I was 29. Let me tell you the story. I had been getting these dark blobs in my vision and they would resolve. I thought they were a form of migraine auras. Then one morning I woke up with a dark blob in my right eye that was shaped like a shark, only it never went away. When I saw the man who is now my Ophthalmologist he took one look in my eyes sat back, took a deep breath and said ‘You’ve had a stroke in your eye.’ I about fell out of the exam chair and Doug about fell out of the chair across the room from me. At least I had an answer. There was a spot in my vision that had gone gray. He said a whole lot of words after that but I only remember a few. He went on to tell me that I had a Branch Retinal Vein Occlusion and that they rarely happen in people my age. He then grabbed my hands and looked at my fingernails and said ‘Yep just as I suspected.’ At the time my fingernails were covered in splinter hemorrhages, tiny little blood clots under my fingernails. He asked me if I had a family history of Lupus and I said yes. He said to have my doctor to test me for that and more specifically Antiphospholipid Syndrome. That the splinter hemorrhages, branch retinal vein occlusion and my recent miscarriage were all signs of APS. He dictated my entire appointment onto a tape recorder. I was in tears because someone was finally able to give me an answer as to what was going on. A direction. Dr. B was the first one of my doctors that mentioned APS. He would later be the doctor that convinced my old PCP to place me on Plaquenil as well. He has been one of the most helpful members of my team to date. He is also the doctor that has been on my team the longest. In that first moment though, he gave me answers or at least a direction to look in. For the first time since the bizarre symptoms started I felt I’d at least find out what was happening to me before it took me.

Branch Retinal Vein Occlusions are killers of your eyesight. A funny thing happens when you lose part of your eyesight. Or at least it did to me.  My brain in trying to make sense of the newly formed blind spot in my right eye tried to put random images in that spot. So I’d be sitting talking to my loved ones and a random cat would pop into that area of my vision, out of no where. Logically I would know a cat didn’t belong there, but there it would be. The freakiest one was an image from girl scout camp, a place I haven’t been in 16 year. I thought I was going insane. Charles Bonnet Syndrome, is the official name for this phenomenon, which I learned after a few weeks of it going on. There is nothing more unnerving than sitting in a space and seeing a random image that you know doesn’t fit. Hallucinations because your brain is freaking out, is not a fun thing. The brain is pretty smart though, and that’s how it tries to compensate for the blind spot. Something else pretty amazing happened, my brain eventually stopped seeing the blind spot when I have both of my eyes open. That’s right as long as I have both eyes open I see mostly normally. That’s pretty cool. If I close my left I have a pretty significant blind spot hanging out in my lower not quite center right vision. It still sometimes looks like a shark, but mainly like a shimmering grey void. Not at all what I thought blindness would look like.

It’s made life interesting. I had to see Dr. B for monthly appointments until January. At that point my eye had healed enough and was  stable enough that he cleared me to go 6 months until my next appointment. I see him at the end of the month. A lot has happened since then. The last time I saw him we had classified me as Primary APS, now I have Lupus as well so that makes APS a secondary condition. My meds have changed. I have changed Hematologists (I was in the process of doing this when I saw him in January), PCPs, added a Rheumatologist and am adding a Dermatologist.

There’s a lot more to this part of my story, but it occurred to me I hadn’t really talked about my vision involvement yet and figured this was a good time to introduce it. I want to conclude on a positive note. I haven’t had a transient clotting event in my eyes in 4 months. My vision while I still have the blind spot, and some other lasting visual disturbances that I’ll go into later returned to 20/20 in both eyes. The clot  may have impaired my vision but it didn’t totally render me blind. I have that to be thankful for.

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21 thoughts on “It’s like a Stroke In Your Eye

  1. I am glad your vision returned and that you are doing okay right now. You truly are an inspiration in that you give out such great information and your experiences with it and keep such a good outlook. Hugs hon!! You certainly inspire me.

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    1. Thanks sweetie. It’s taken me a while to get to this point. I was all doom and gloom up until January/February. It took a while to shake the Holy Shit I’m gonna die feeling. I still have moments where I go through panics that I still might. That’s part of why I sought out AL. I couldn’t imagine living the rest of my life fearing death or my illness so off to therapy I went. I’m still amazed at my vision, how quickly it changed, the changes that occurred, and how quickly it recovered, even with the blind spot that remained. I have transient blurry spells where my vision just won’t focus properly, and some other random oddball vision ‘trickery’ that I’ll post about It’s a lot to try to explain so I won’t try to do it through a comment. I still have double vision spells on occasion. At first we thought it was because of my clotting disorder, which is more a hey your blood is too thick disorder than just a clotting disorder. As time has gone on, and we’ve gotten my blood properly anticoagulated, I’ve continued to have double vision spells, and we’ve realized that it appears to be an ocular manifestation of Lupus. Go me. It’s a sign that I’m flaring and need to get to my doctor. I’m getting to know my body extra well because of all this. LOL I guess this is what I get for putting it out there to the universe that I wish I was more body aware…. WOOPS. I’m now extremely body aware. 🙂
      I hope you are having a lovely weekend!

      Liked by 1 person

  2. As they say, “be careful what you wish for”. Ha! I hope the flareups don’t last long. My thoughts are with you. The weekend is going okay. My Fibro has been acting up lately because of the rain. I am having trouble with my vision as well. Fibromyalgia apparently does affect your vision, it makes the muscles around your eyes “weak” and it is hard to focus. Yeah me! I am in no where near the problem you have, but I just want you to know that I can understand some what. I have already had a cornea transplant from Keratakonis (the cornea misshapes into a cone) and my other eye needs done eventually. It is very scary sometimes, to think of not being able to see at all. So I can understand some.

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    1. Ladies, just reading both your comments (and your wonderful post Nicole), makes me want to come over there and give you both huge big hugs. Here’s me having a right moan yesterday because the weather here in Hove was too humid, and there are you two going through what I can only imagine is something near hell health wise. I wish you both well and send my found regards and best wishes to you both. Take good care of yourselves and keep the wonderful posts on your blogs coming, as they are such an insipation to me.

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      1. Hugh, Thank you for the virtual hugs! 🙂 I hate humid days btw! I’ll moan right along with you over them. haha. It has been pure hell but what doesn’t kill us…. right? God I hope this doesn’t kill me because I still have a lot of fight in me. Seriously I’m not lying when I say I thought I was done for late last summer/fall. It was a scary time. It will take some time to move past. Luckily I have an amazing support team, (and I consider my blogging family part of that btw… thank you all for being part of it!). I promise I’m taking as best care of me as I can. Honestly I’m such a compliant patient that it makes me shake my head sometimes. Not what I expected given how I was before all this happened. Speaking of which I have yet another appointment tomorrow. This one is a followup with my Hematologist. Fun times, he likes to poke my armpits. UGGG. Much love and hugs!

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    2. I didn’t realize Fibro impacted vision, but that makes sense. The majority of the people I know that have Fibro also have vision issues. Because of my vision issues they also ruled out MS because of the double vision spells and other fun house vision issues I was having because of the microclots moving through my eyes, brain and optic nerve. It was a crazy time and lead to a lot of anxiety. I still freak out at the smallest change at in my vision. Not as bad though. Therapy has helped a lot in that regard and I am hopeful in a few more months I’ll be in a place where I can come off the antidepressants. I’m at a point I want to trim down the med list to only the ones I have to take. That may be the only one I can come off of for a while but hey one less perscription sounds awesome.

      I agree one of my biggest fears from all of this is losing my eyesight. With the transient clotting events, that’s what I face every time one would happen. The possibility of more blindness. Once a clot hits a retinal vein I’ve got about 90 minutes to get to my Ophthalmologist to see if he can get it dislodged before any lasting damage happens. That’s rather terrifying. Luckily the combination of anticoagulants, plaquenil and now the immunosuppressant should drastically decrease the likelihood of them occurring. Prior to adding Plaquenil to my treatment plan they were happening every week or so. I started Plaquenil in January and had a couple since. The other thing was getting my INR increased when I started seeing my current PCP. With my condition clots aren’t the only issue we have thicker blood all together so where as most people on Warfarin have a much lower INR of 2-2.5 and that is sufficient of keeping their clots at bay, I require an INR of 3-3.5. the immunosuppressant was started to supress my immune system to help with my joint pain and fatigue but since my clotting issues are also autoimmune I am hopeful that it will help in that regard as well.

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      1. Not too many people do know that it can. Blurred vision and all that. I hope you are able to keep your INR under control. Be careful with the greens like Kale and spinach. I am sure they told you that. I am so sorry you are going through this and I am glad that I can be here to help cheer you on. 😀

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      2. Good to know. Vision issues seem to occur with a lot of conditions. I didn’t realize they happened with Lupus and APS until, well I got them and started experiencing them first hand. Plus some of the medications I am on also cause episodic vision issues. It can be frustrating at times.

        Oh yes I pay close attention to my Vitamin K intake and make sure it stays consistent. It’s pure torture because I love veggies and some of my favorites are the ones I have to limit the most. Leave it to me to get a condition that requires me to be on a medication that limits vegetables. SIGHS. I am so glad you are here as well. Thank you for being part of my support team. It means a lot to me. 🙂

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  3. Nicole, Thanks for sharing this part of your disease. I wish we could discover what causes the autoimmune diseases. I hope it opens a dialogue with others. Talking and sharing gives some relief. I have the threat of loosing my sight as well. Not eminent danger as of my last ophthalmologist appointment. Diabetes destroys small blood vessels, eyes, kidneys, extremities are affected. I have small bleeds in the back part of the eye. As long as I can maintain a good eating and exercise and medication, I can keep blood sugars as close to normal as possible. If I get sloppy with my habits, my body will suffer. Then I must flog myself mentally and get back on track.

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    1. I wish they would too. As long as they’ve been aware of some of them you would think they would be closer. With Lupus they have made some great strides. They have BenLysta now, but I’m in a tricky position where I don’t have the positive labs that support the diagnosis so if we tried to get approval for that treatment through my insurance company we would fail. It is infusions and really expensive. How often do you have to have your eyes checked with Diabetes? My mom has diabetes and I know she doesn’t do everything to the letter, she is not a compliant patient to say the least. lol

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      1. Now only once a year. I’m pretty stable. I have to read diabetes.com and stay current with treatments, to be charged and motivated to take charge of my health. Maybe your mom would like to use that site, American Diabetes Association.

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      2. Good for you! I’m a strong believer that we have to be proactive and advocates for our care. I’m constantly reading about my conditions and when I find info that I think needs to be brought to my doctors attentions I do just that. They are getting use to the routine of me having a list of things to discuss at appointments, pictures of skin rashes that never actually make it to appointments and notes from my other doctors. Balancing a team of doctors is almost a full time job. Ugh.

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  4. What an awful experience, Nicole. But I am glad things seemed to have resolved and your vision is okay. Sometimes the shocks just keep coming in life. Pavanneh you have had your share as well. Wishing you both good health for the future. As I type this I have just finished a post and managed to get some washing done today. My back aches and I know what it is to live with chronic pain. Best wishes to you both.

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    1. The brain is an amazing thing with how it overrides what is really there. The blind spot remains, and occasionally it will distort my vision but a few blinks and I can usually be fine. I try not to close my other eye and just look with my right eye. That still leads to a lot of emotional upset. I hope your back is feeling better today. Chronic pain is no fun, it becomes like a shadow that follows us around and echos our every move. Take care dear friend.

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      1. It must have been strange to see things that weren’t there. As you say the brain does extraordinary things sometimes. It is 10.30 pm here now and I am ready for bed. It will be good to lie down. I need to stretch out from time to time.

        You put it so well about pain being like a shadow. That is exactly how it is. I usually push the pain to the background but it is a pretty constant companion. However, there is a difference between bearable pain and unbearable pain. Mum said this to me. It’s true – there is pain that you can partially ignore and carry on with your life and then there is pain that puts you in bed.

        Nowadays I have bearable pain. I don’t mean this to sound like a whinge! Lol! My life is good now and the blogging is a wonderful distraction. Nicole, you have done a wonderful job with Covey View and the facebook page! 🙂

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      2. It was a strange experience. Especially when I didn’t know it was normal. It wasn’t until after the fact that I found out it was part of the process. It was at a follow up appointment I mentioned it in tears to my Opthalmologist and he grabbed my shoulder in an affectionate manner, assured me that I wasn’t going insane and explained what was happening. He asked me why it had taken me so long to bring it up and I told him I was afraid if I told a doctor I was seeing things that I’d have to be committed. He assured me it wasn’t insanity and gave me a lot of info on what was happening.

        The pain is an interesting phenomenon as well I wrote this a few weeks ago https://triumphantwings.wordpress.com/2014/04/07/theres-a-dj-in-my-joints/
        It’s a fifty word short. 🙂

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  5. I lost part of my eye sight when I was 7. I didn’t find out until I was 26. The damage for me is the brain tissue. I appreciate what you are saying you are seeing something that isn’t there. I on occasion feel like my eyes and brain are trying to see even though there is no possibility.
    I am so happy you sight has evened out. There is a lot of emotion that comes with loosing some or all of your sight. It took me 2 years to come to terms with it, I think we heal and deal in different ways. 😀

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    1. You are right, I can’t even begin to explain the range of emotions I went through beyond fear. Granted part of it was simply because I did not understand what was happening at first. Then when I started having the random images pop into the area that was no longer able to receive ‘new information’ from my retina, I seriously thought I was going insane until my doctor explained Charles Bonnet Syndrome to me. I can’t imagine going through something like that as a child. The brain is a phenomenal organ, it tries to compensate and often overcomes a significant amount of trauma before you see any outward presentation of damage. I have a whole new appreciate for my eyesight and brain due to APS & Lupus and all that I have learned since my diagnosis.

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