[F]Hi!
I'm 32, positive for Factor V Leiden (a clotting disorder) and have survived 5 separate episodes of pulmonary embolisms, totally about 40 lung clots total.

A little over a month ago a clot was located the back of my left eye. I'd been going blind in the eye off and on since June (I'm not an idiot but this happened 5 years ago and the Drs told me I was making it up so I admit I took a while this time) The ophthalmologist got the clot to dissolve with two separate types of eye drops. My blood thinner medication, Lovenox (lwmh) was checked and my blood is actually a bit too thin. There was some residual vision loss, the neurologist believes I'm having multiple TIAs. We are working to confirm/deny that diagnosis.

Suddenly two days ago I went almost completely blind in both eyes. Started with a large circle in the same spot in each eye, then blindness spread around the outside of what vision remained so I was left with a tiny sliver between the two. The loss resolved itself completely by the next morning but left me with a nasty headache.

Ophthalmologist saw me while the vision was limited, ruled caused by migraines, seemed unconcerned. On my own I saw my primary doctor today to get migraine meds to stop the blindness. He's normally very calm, but was freaked out by the clot/migraine combo. My MRI/MRA is tomorrow and we're working on getting more heart tests done (holter, trans-esophageal echo, and carotid ultrasound). I was told no migraine meds as they are vasoconstrictors which, in eyes that have been clotting could cause permanent blindness. I'm guessing it could also cause a TIA.

My limited understanding leads me to either an ongoing vasoconstriction issue or a string of TIA's. Any ideas? I should mention that I had 4 PEs while on coumadin, last one with an INR of 3.6 and I take 230mg of Lovenox/Clexane a day just to stay at a basic acceptable level. I know that Lovenox level is high but I clot through anything else. Oh, and I have a vena cava filter but 3 PEs have made it through even though the filter looks OK. Additionally I've been having increasing issues with word choice, lack of focus, and difficulty reading - focusing eyes or focusing brain, I don't know.

My Dr today made reference to "avoiding the worst case scenario" and that I needed to rush all of the necessary tests, that we were no longer in an area where I could mosey along. Infuriating as I was trying to move this along but the first two Drs - rheumatology and ophthalmology kept tossing around who was responsible for ordering the heart tests (even though I have a PPO and don't need a referral the cardiologist is, um, cranky and they both wanted someone else to deal with her). So now it's a month later, someone else will deal with the cardiologist but I'm in danger of losing..? My eyesight? My life? I don't know.

Ok, sorry for the ramble but too much info always seems to help more than too little info!

Take care,
Karinski