Can anyone tell me off they have ever experienced a seizure with lupus. I had a strange experience that felt like it could have been a seizure but I don't know. Calling my doctor Monday...but was wondering if any of you had ever experienced one and what is it's characteristics. I am a little worried and scared too. As always....I appreciate all of you on this forum and look forward to your replys.
Thank you in advance
Barbara
I had several full blown grand mal seizures over twenty years which then disappeared as suddenly as they came. I always had an aura of the intense smell of burning rubber beforehand and a sense of distance...like being encased in glass. I now get an occasional phantom smell aura and dizziness, but these tend to end in a migraine, rather than an epileptic fit...thank goodness! I hope you get some results from seeing your GP. It's a very scary thing, but might not be epilepsy. Sending air hugs. X
Thank you for your reply musicteach....I am calling my GP to tomorrow. Can you tell me what you experienced during the seizure? I read that some people lose all consciousness and others only partial due to the type of seizure they were experiencing. What I experienced was this: Upon awakening I got up and used the restroom and decided to lay back down for a few minutes. Well...I was drifting off but not asleep when I wasn't able to move. Then my neck and head began a jerking motion as well as my arms. My one arm actually jerked so hard and landed on my face and then it was over and I was able to move....so I immediately got up!! I was scared to go to sleep the next night. This has really scared me.
Thank you so much for replying.
Barbara
Get your nervous system checked out by a Neurologist who has a good knowledge of Lupus.
Thank you Freckle1000
I am calling my GP tomorrow and I am sure he will refer me to a neurologist. This is overwhelming! I will keep you posted!!
I know its a bit scary, but do keep me posted. I have SLE neuro problems myself. Although in the process of getting this diagnosis I had a swquiillion different blood tests to rule out so many other things that can effect you neurologically that are treatable. Just as is neuro lupus.
xoxoxoxoxox
Hopefully your GP will have some answers for you. I wasn't aware of anything during the actual seizure, but according to those who saw me, I often delivered a banshee scream...the singer in me!...and then knew nothing until I came to, when I would take some time recovering my memory. The fit itself was classic clinic/tonic spasms. When I came to, I always had a severe migraine and was horribly sick. I don't know about other forms, but I believe there is a type called Jacksonian, which doesn't include full loss of consciousness, and there is petit mal, but that's more of a temporary absence. Good luck and keep us posted! Xx
Thank you so much! I look back on the episode and I realize that this wasn't the first time that I have experienced this. It always happened during sleep time, usually upon awakening. My mother had always told me that it was a sleep disorder but was never taken to a doctor for it. She diagnosed it herself...( That's another story) So this has been happening for quite some time. The only thing different this time was my arm hitting me on my face. That never happened before. I shall keep you posted! Again...Thank you!!
🌸
Anyone else with UCTD or Lupus have tooth loss?
Lupus or MS 
Hair loss with lupus
Barefoot With Lupus
