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Seizures and Lupus

Do I have seizures or something else related to Lupus?

I’m 20 and I was diagnosed almost a year ago with lupus, but I can’t figure out if these episodes I’ve been having are related to lupus.

For almost two years I’ve been having these episodes once or twice a month where my whole body stiffens especially my left side (I can’t squeeze my hands or move much), I’m extremely confused, I stare into space, I’m unable to understand other people like the words get confused in my head, my heart speeds up, my face twitches sometimes, I’m nauseous, I drool, and if I’m exerting even a moderate amount of energy I “collapse” or faint and I’m so exhausted I can’t move for an extended period of time but I’m awake like I can hear everything. Before these episodes I often have a headache in the back of my neck and head.

After these episodes I’m often nauseous and tingly on my left arm, hand, and back. Usually I can remember most parts of the episodes.

I have had a CT scan and MRI during one of my first episodes over a year ago and showed no signs of a stroke. I have been to the ER several times for them and they don’t seem to have a concrete reason. One suggestion was hemiplegic migraines but that didn’t seem like the full answer.

I was looking into seizures and that could seem to be an answer. I take 200 mg of hydroxychloroquine and 4 mg of prednisone and that doesn’t seem to affect these episodes at all.

Any answers are appreciated!

  1. Wow that has to be difficult to deal with. I have never had any episodes of this but I think it is definitely something warranted to speak extensively with your doctor. Here's a great article https://lupus.net/symptoms/seizures that may shine some light on your issue. I hope when you speak with your doctor you get some answers. Thanks so much for your story. ~Racquel~ lupus.net team member

    1. I have lupus and when I was first diagnosed I had similar episodes like this. I had a big neuro work up including MRI's, CT scans, EMG's, lumbar punctures, and EEG's.At first they thought I had MS but all of those tests came back normal. I was sent to a rheumatologist who diagnosed the lupus because of my symptoms and blood work. She sent me back to the neurologist who diagnosed it as vertebral basilar migraine. He told me he had seen it many times in lupus patients and put me on an anticonvulsant as a preventative. It really helped and I only get the migraines infrequently now. I also take Methotrexate for other lupus symptoms but I've been off Prednisone a few years now. Try and see if you can see a neurologist who will be able to figure it out.

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