Scintillating scotoma instead of TC seizures now?

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Tiredmom

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I need help. I have been sitting here with flashy lights before my eyes for exactly 40 minutes. I used to get full blown seizures due to an AVM in the occipital lobe. Thankfully, a combo of Keppra XR and Topamax has stopped those.

However, now I am stuck with vision loss every few weeks. This is really scary and it starts out just like my full blown seizures used to. I am somewhat confused right now and can't really see thru the flashy lights. After, I will have the crushing migraine I used to get with the TC seizures.

Does anyone else get this? How do you stay calm? I have lost my license in the past so I don't dare even bring it up to my doctor. I lost my license, then job, and almost my child due to these flashy lights. It's only on my right side. Can anyone relate? Thanks.
 
Before I ever had any seizures, I would very occasionally get scintillating scotoma (but no headache). Like yours, it would last for about 40 minutes, and then I'd be able to see properly again. I assumed it was a kind of migraine and ignored it.

But since my seizures (tonic-clonics) arrived 14 years ago, I haven't experienced the scintillating scotoma at all. My guess is that either the scotoma was a kind of simple partial seizure that evolved into the tonic-clonics, or the anti-seizure medication I'm on has suppressed it.

It may just be a matter of adjusting your medication -- ask your doctor about tweaking your dosage to see if it helps. I know you don't want to lose your license, but if it interferes with your vision, you may not be safe behind the wheel.

Another possibility: We've had a few members whose migraines went away after they started taking a magnesium supplement. Worth a try.

One more thing: Do you keep a seizure diary? Have you been able to identify what is triggering the scotoma/migraine? If it's every few weeks, perhaps there's a hormonal connection.
 
I have actually tried everything to stop these within the past 10 years. Hormonally, I have tried stopping all hormones with Depo. It did seem to help at first but now that I have been on the shot for 3 years my body seems to have adjusted and I get the migraines again.

Someone once said allergies cause these. I have had so many and I can't pinpoint anything.
 
I've never been allergic to anything, so at least inmy case the scintillating scotoma weren't related to allergies. If there is a hormonal connection, maybe natural progesterone lozenges would help.
 
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