Hi emonon
i had a flare in october for the first time in 7 years and started experiencing similar syptoms. So after 3 mri's, a visit to a neurologist, rheumatologist, internist, opthamologist and a pain management doctor, they determined that the migrains I had had all my life had taked on a new aspect, occular migrains. You can have the light disturbances without the head pain. It can still make you seem off balance or dizzy, nauseous and be light sensative. But somtimes, just white blobs of light floating in your vision. You might ask one of your doctors about this.

Good luck

mia

Hi emonon
i had a flare in october for the first time in 7 years and started experiencing similar syptoms. So after 3 mri's, a visit to a neurologist, rheumatologist, internist, opthamologist and a pain management doctor, they determined that the migrains I had had all my life had taked on a new aspect, occular migrains. You can have the light disturbances without the head pain. It can still make you seem off balance or dizzy, nauseous and be light sensative. But somtimes, just white blobs of light floating in your vision. You might ask one of your doctors about this.

Just a note about plaquenil, it can cause eye problems and you should be seeing and opthamologist every 6 months for and eye exam!

Good luck

mia

Hi mia,

thanks for responding

i experienced a few ocular migraines as a child and have also had one recently (flashing and blind spots in my vision then a terrible headache which makes me vomit). I hate them!! But I found the best thing to do is get to bed straight away and keep the room as dark as possible (had to resort to sticking my head under the blankets a few times!). If you're lucky enough, you fall asleep and sleep through the pain of the migraine.

Unfortunately my recent problem is a little different. The spots stay there and are always there, getting bigger, until I take prednisone (or up the dose which I hate doing!). There are no other symptoms like a headache but because of these spots I am seeing an opthamologist regularly so I don't have to worry about getting the extra eye exams.

Are ocular migraines a common symptom of lupus?
Does anyone know?

At least that's what they were diagnosed as. They start out with parts of the picture of my visual field missing. For example, i'm looking at writing a check, and I can't see the date in my visual field, until I look away, and then I can see it. That lasts a few minutes. Then I get this small flashing light that grows. I get this in both eyes. And it elongates and looks like an arc (or a brilliant snake) that pulsates and takes a good part of my visual field. The whole process lasts about fifteen minutes. It might be followed by a slight headache. My doctors have told me that i'm lucky, that most people get horrific headaches with these. I had the first one when I was 18. And they were very rare for many years. I'd have one maybe twice a year. Now, I have them every week, sometimes three or four times a week.

These visual auras have changed more recently too since a huge flare two years ago. Sometimes this dark field comes into my line of vision. This one is just in one eye. It lasts for about thirty seconds and then slips aways again. But I get a strange pressure sensation with it, and lots of little, what I call, "lightning flashes." i've worried that it was my retina tearing. But i've had it all checked out. The opthalmologist said everything looks fine in my eyes. And that this phenomena must be ocular migraines. I worry though. I see floaters all day long, worse in bright sunny weather. And the lighting flashes are with me every day as well.

It's a scary thing when your vision is affected like this.

Hi emanon! Welcome to the lupus forum!

i've experienced black dots...And loss of peripheral vision for a while. I've had countless neurological and opthamological studies. My latest i'll be getting back next month. They've found a few things and even suspect a few more. As I continue to find...A lot of this takes time.

keep us informed if what you learn! Please...

Hugs,
ladybrannon

Ladybrannon what do those black dots look like? I sometimes wake up with a blackish or gray dot in front of my left eye. It's right in the center of my vision. As I get up and move around, the dot goes away. The opthalmologist could find nothing wrong. But I worry because my father is blind.

They literally are black dots that take out small sections of my vision for random amounts of time. Sometimes they are just there and other times they make me feel incredibly ill.

I'll let you know what I find out from this latest round of tests!

hugs,
ladybrannon

It helps to know what others are dealing with. I saw the rheumatologist yesterday. After listening to my history he asked, "has anyone ever told you you had lupus?" he also is checking into some other diseases like waggoners' disease and hepatitis c. At first he thought my symptoms sounded like anticardiolipin disorder. But saw that the neurologist already did that test which was normal. He was particularly interested in my severe preeclampsia diagnosis 20 years ago. Said that five months gestation was much too early for that diagnosis. That's when he asked about the lupus. So, let's hope for an accurate diagnosis of whatever is going on.

Hi tallwoman. I read your post about your doctor's interest in your preeclampsia 20 yrs. Ago. I had a similar experience 18 years ago. They came up with a medical journal article that accounted for all of my odd symptoms (hemolysis, elevated liver enzymes, low platelets, & protein in the urine). The syndrome was called hellp. The final stage of the syndrome was preeclampsia. They took my baby at 7 months. I had been ill w/ this syndrome for over a month before they diagnosed it. They never tied it to lupus, though. It was another 15 yrs. Of odd illnesses before I got the diagnosis. Looking back, of course, it's obvious to me I had the lupus then. I wonder how many others have had the same experience with a pregnancy.

That's interesting. I'll have to look up this syndrome. But I don't remember anything going on with my liver at the time. But you never know. They were mostly concerned with my liver and my lungs. I had a pneumothorax (which they thought was aspiration during surgery to terminate my pregnancy). I was on a ventilator for four days. The reason the rheumy is looking for hepatitis c is because they gave me a blood transfusion at the time. Do you remember everything that happened with your preeclampsia experience? I had high high blood pressures 210/120. Went blind. I already mentioned the pneumothorax and kidneys shutting down.

Hi tallwoman,
yes, I remember everything pretty clearly, although it seems like I couldn't really have gone through all of that. I hesitate to tell you how high my blood pressure went because it will sound like i'm lying. I was on a monitor that displayed the read out every few minutes. My husband was right by my side & he saw it too. I'm sure that when doctors look at my medical records they are sure it is a misprint. It was 260/174--i swear! It's nothing short of a miracle that I didn't have a stroke or heart attack and die! For about a month before they took my baby I had horrible pain from my liver dysfunction. I also had some kidney problems. My blood wouldn't clot & I remember having a bunch of little red dots all over my arms and legs where blood vessels had burst under the skin. I was so exhausted that i'd be up for about 10 minutes and then would have to sleep for hours. I started swelling terribly by the end of the month. I just happened to have a doctor's appt. The day my bp skyrocketed. I had felt so lousy that I didn't notice a difference that day. I'm sure I would have died right there at home that day if I hadn't gone into the doctor's office. He sent me right to the hospital--trying not to alarm me or upset me. For as bad as everything was, I was so fortunate that I bounced back to my version of normal within a couple of months after they delivered the baby. And even though we had plenty of scares, my baby had no lasting problems. It's hard to believe that was 18 yrs. Ago. As a matter of fact, this friday, the 21 is my girl's 18th birthday & she graduates from high school on the same day! I have a lot to be thankful for.