Lupus, Seizures, P.R.E.S., severe migraines & peeling from inside of eyelids? Help pls. Tx

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New Member

Date Joined Mar 2014
Total Posts : 4
   Posted 3/27/2014 5:15 AM (GMT -6)   
Hello. 51 yr old female new to the site having some issues & wondered if anyone having same problems. Have had migraines with visual disturbance prior since 16 yrs old. Was dx with SLE in early 90's. Treated by rheumatologist for first few yrs. After several moves, haven't seen one. When I have a flare up, my PCP prescribes prednisone. Had 2 TIA's 2000-2001. Then stroke in 2005. Neuro said it was due to antiphospholipid syndrome clotting disorder, was put on Coumadin. 3 months of speech & physical rehab to walk, I have no residual effects left. Then in 2007 I had the worst pain on right side of head ever, felt blood rushing in head & could see but unable to coordinate my hands to do what my eyes were seeing. Vision very distorted! Dx'd with P.R.E.S. (Posterior Reversible Encephalopathy Syndrome) basically swelling of the brain. Spent more time at Univ of Chicago. Normally caused by extremely high bp (mine wasn't) or drugs taken after organ transplants, again nope. They determined since this is such a rare disease, at the time only about 200 cases dx'd, that mine was unusual, so chalked it up to the lupus. Eventually recovered, rtnd to work & in 2010 began having grand mal seizures. Was already on Topomax for my migraines, so they increased it and put me on Neurontin and Keppra as well. I'm now on total of 300 mg Topomax, 4000 Keppra, 1200 mg Neurontin per day, and when I have SLE flares, prednisone. Has anyone had PRES? Also, now I'm dealing with terrible dry eyes, which I've dealt with before but now the inside of the eyelids are so dry that they are peeling at times. Anyone have any suggestions for good eye drops, artificial tears? Anyone with clotting disorders from lupus?
Thanks and have a great day! Excuse the spelling in here please ;-)

Regular Member

Date Joined Jan 2014
Total Posts : 360
   Posted 3/27/2014 10:24 AM (GMT -6)   
Gosh you have been through so much! You poor thing.

I'm in Canada so I don't know if it would be available depending on your location but I use "Blink" eye drops. They are highly recommended as they are very low in preservatives.

New Member

Date Joined Mar 2014
Total Posts : 4
   Posted 3/27/2014 10:35 AM (GMT -6)   
Thank you acquiesce! I'll look for that here in the Southeast US. Have a great day

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 3/27/2014 4:08 PM (GMT -6)   
Blink is good and Soothe.
Are you seeing a good eye doctor?
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 3/27/2014 4:42 PM (GMT -6)   
You want an eye drop that is a LUBRICANT, that has NO medication, and has NO preservatives. There are several on the market that meet these guidelines.

(this info is from 2 rheumys + 2 eye Drs).

Most drugstores carry at least one eye drop offering that satisfies these restrictions. You can also use eye gels (best at night) if they satisfy these criteria.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
"Life is far too important to be taken seriously." - Oscar Wilde

New Member

Date Joined Mar 2014
Total Posts : 4
   Posted 3/27/2014 6:09 PM (GMT -6)   
I need to remember that saying about the lemons! Love it & it made me laugh for a change ;-)
Unfortunately, no I haven't been able to get to the eye dr. I know I need to because my glasses for tv & distance etc are over 6 yrs old! But my PCP still won't allow me to drive with the seizures, nor would I dare. I couldn't live with myself if I had an episode while driving & hurt someone. So trying to find a ride is an issue. Plus since they put me on SS disability, funds are very limited as well. I guess I never thought I would not be working & living a normal life until I got much older. This wasn't in my plan! But, I'm blessed that I at least have an income & I know there are many people with much worse illnesses! I've survived some of the scary ones so I thank God for every day!
Thanks again & enjoy your evening

New Member

Date Joined Mar 2014
Total Posts : 4
   Posted 3/27/2014 6:12 PM (GMT -6)   
Thank you Lynnwood! Appreciate the guidance :-)

Veteran Member

Date Joined Mar 2006
Total Posts : 2608
   Posted 3/28/2014 1:57 AM (GMT -6)   
The inside of my eyelids also peel & hurt terribly. I use the thickest lubricating fell I can buy & put cold damp washcloths over my eyes. Much of the time I feel like I have sand in my eyes. I sure can relate.
SLE, fibro, renauds, restless leg?

Regular Member

Date Joined May 2007
Total Posts : 482
   Posted 3/28/2014 6:54 PM (GMT -6)   
Oh you have been through so much - I am sorry! Last spring my ophthalmologist prescribed Restasis for my eyes. Same symptoms you describe. The improvement has been dramatic. It is a prescription but worked so much better than any over the counter I had tried. I hope you feel better.
Take care, Fran

Dx: Lupus, sjogren's, celiac, severe allergies, asthma, GERD
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR, CellCept, Zantac, Bactrim, Q-Var, Restasis, Albuterol
Daily Supplements: Calcium, B-100 Complex, Daily Vitamins.
As Needed Meds: Epinephrine, Benadryl, Proventil, Tylenal, Vicodin, Prednisone.
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