[Karinski]

[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

[simoneaugie]

Hi karinsky,

Your post was long, but well written and thorough. I don't know all that much about blood clots. I met a lot of people who suffered from them while working in hospital. My job was to educate them about diet and blood-thinners. Actually, coumadin was the only one I talked with patients about. I know what a TIA and PE is. I feel for you dealing with all the doctors and associated stuff.

My eyes perked up when you mentioned vaso-constriction. I wondered if you avoided caffeine which is a vaso-constrictor.

I used to tell people to avoid foods high in vitamin K which is a natural blood clotting agent. You probably know all about it. Vitamin k foods include: mung beans, green tea, oatmeal, broccoli, leafy dark greens like collard and mustard greens. I can't remember all of them now. I also used to caution patients about taking large quantities of vitamin E.

Have you had a MRI before now? Some of the visual and difficulty with mental tasks could be linked to Multiple Sclerosis. If you have that (I do) a high dose of steroids can halt the vision loss. I'm sure your neurologist has explored this. MS is one of a neurologist's specialties. Don't let them intimidate you! If they don't want to be bothered to help you and each other figure out what's going on with you then find a doctor who will. A good doctor will help you coordinate care, not send you away in hopes that someone else will pick up the ball.

Hang in there,

Simone

[inthebox]

Karinski:

Presumably your visual symptoms are due to lack of blood flow to the optic artery or vein caused by a clot and maybe aggravated by vasoconstriction [migraine ?] of the vessel.

Some tia's are embolic, that is they break off from some other place [ heart, carotid arteries ] and migrate forward ? To your eyes. Both eyes at the same time ? Very unlikely. If an embolic tia is the concern a source should be sought after. Thus, Echocardiogram and carotid ultrasound.

Some medicines may make you more likely to 'clot'
For example
Oral contraceptives iof you are female
viagra if you are male

Other things that may involve your optic neurovascular functioning are Multiple Sclerosis and Temporal Arteritis.

Of course the most common cause of thrombosis/ clot is atherosclerosis, and the risk factors for that should be adresses if they apply.
- diabetes
- high cholesterol
- smoking
- high blood pressure


I hope you get better
Please let us know the results of your tests






Grace and Peace