I, too, have constant visual aura. For me, it's been going on for 5 years when I was 42 (48 now) and I'm female. I have scintillating scotoma which, when unmedicated, can last from 30 minutes to up to a couple hours as they sometimes end and then, start up again. When I have three, my body starts to jerk uncontrollably. I also have varying degrees of night blindness, black "floaters" that randomly appear and disappear all over my right visual field, distortion, ghosting and trailers, double vision, rays coming from light sources, quick bursts of color in the center of my vision called phosphenes, wavy/shaky vision, and visual snow. I also have had issues with seeing what looks like shapeless blobs (so far only white or black) moving in my peripheral vision, which can be pretty startling. I very rarely have any pain with these beyond discomfort at the base of my skull.
I've had 2 brain MRIs (with and without contrast), an EEG, an in-hospital video EEG, 2 cervical x-rays, a cervical MRI, a cervical MRA and a brain MRA. The last three were completed the other night and I don't have the results back on those yet. Everything else was normal except for the cervical x-rays which showed mulilevel disc degeneration with retrolistheses and foraminal narrowing. We don't know if that's the source of the issue. The neurologists did note that I was experiencing auras during the video eeg as they had me on film reacting to visual disturbances but there was no seizure activity associated with them. A neurophthalmologist found that I have Adies in both pupils (basically, my pupils react slowly or not at all to light sometimes).
I'm being evaluated by a physical therapist who specializes in post-concussion patients as the auras began after a bad fall down the stairs. Like another poster in this thread, I was found to have neuro accommodations as if I am without sight. Basically, when trying to focus on an object with objects behind, my eyes will jump to the objects behind immediately and lose focus. This apparently creates a conflict in visual processing in my head and is why I'm the super klutz walking into everything and tripping over nothing. She also found convergence issues (my eyes don't work together) to 2 ft out, which is the source of my near double vision. I have visual exercises to try to repair these issues and we don't know if this is stimulating the auras or a result of them. My PT also asked me about
Other issues that have formed or are associated with this are erythromelalgia and livedo reticularis (vascualar disturbances) in my palms and arms that worsen before an episode of scintillating scotoma. I have problems with thermoregulation--I either don't sweat, sweat too much, or am icy cold. My PT has noted balance and equilibrium problems (I fall a lot). I also experience dizziness, nausea, light headed feelings, and constant ringing in the ears. I also have issues with confusion, language, and spells where I'm "gone" that don't appear to be seizure.
I was initially placed on propanolol and 750 mg of depakote to combat this. The auras improved except for the black flecks, night vision issues and double vision for about
a year or so and then, the rest returned. My neuro retired and the new neuro placed me on 1000 mg of depakote. This wasn't working until it did. Then I realized that the pills had changed (couldn't read the bottle) and I had been actually taking 2000 mg of depakote. I was immediately given a depakote level and was found to be in therapeutic level at 80 and not overdosing. My neuro had me taper down to 1500 mg and this stopped the scintillating scotoma episodes and other auras except for the double vision and walking into things. I was taken off of this dosing for the video EEG and when it was done, I suggested we try leaving me off to see what happened as I didn't experience any scintillating scotomas during my stay, which are the larger issue. My neuro declined but let me try 750 mg again as we both agree that 1500 mg of depakote is dangerous to be on permanently (I've lost half of my hair, gained 20 lbs, and it damages the liver). The scintillating scotoma returned, lasting an hour and a half with repeated events. I'm currently on 750 mg depakote, 400 mg B2, and 400 mg magnesium oxide. This isn't working for me either and after having an episode of scintillating scotoma in my primary care doctor's office the other day, she wants my neuro to initiate adding topamax. So, soon, I'll be trying both topomax and 750 mg of depakote as we're trying to find the safest way to control this.
I was placed on a short term high dose prednisone, which did have some interesting effects after a few days. My night blindness, black spots, and double vision lifted; however, my episodes of scintillating scotoma increased back up to 1-2 every other day. I ended up on the prednisone after PT exercises for my neck aggravated cervical radiculopathy at C8 so that could've been the trigger for increased SS.
Hang in there, everybody. I know how hard this is all too well but at least we've found each other.
Post Edited (TheOracle) : 12/2/2017 7:13:38 PM (GMT-7)