For the past 4 days, I've been having the odd premonition-type feelings that I experience when I'm about to suffer a seizure (due to CNS lupus), however, I have never had this unusual feelings for such an extended period of time before, and it's beginning to worry me a little. I'm having repeated out-of-body experiences along with a really really strange warning aura, almost as if my sub-conscious is telling me something awful is going to happen soon. I've never had it last this long before, only usually a few hours at maximum, but it's getting to the point now where I'm unable to sleep because I'm so worried. I'm repeatedly telling my family, friends and partner to be careful when driving or whilst they're out and I'm beginning to get really REALLY paranoid. I've even increased my anti-seizure medication as a precautionary measure just in case the warning signs are directed at me. It's so difficult to ignore and it's keeping me on edge so much so that I'm unable to leave the house without getting extremely nervous. It's driving me insane!!!! I'm putting into practice all that my hypnotherapist has taught me about breathing and clearing my mind etc. and going to a place where there are no worries, but I cannot stop panicking no matter what I do. It almost reminds me of what we know as "animal instinct," i.e. like dogs can sense if a person is epileptic etc. I'm thinking perhaps it may be an idea to get a dog for such times as this, as I'm sure it would be able to reassure me and stop me worrying by way of their actions. It's so ridiculously uncomfortable, and causing me to burst into tears at random times of the day, I'm scared, and don't know what to do with myself I'm so lost... Is there anyone else who suffers the same extended auras? I'm in desperate need of reassurance here...


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5 Replies

  • Hi, I recognise something of what you describe. I get feeling of something bad going to happen, with a sense of deja vue and extreme paranoia. This is always due to a cns flare,and can go on for some time, last time was months, but that was because I didn't get treatment; it's is treated with steroids for me which work really quickly once I have them. I don't have seizures, well only had one and fleeting absences occassionally. I don't have out of body experience feeling, or aura, and it is accompanied by smelling and seeing things that aren't there as well as sometimes, feelings telling me things (rather than voices), It sounds awfull for you, and it sounds different to my experience in some ways, so probably writing isn't much help, sorry, I just wanted to empathise a little! If it is usual for you, I would try to get checked out as soon as you can, take care xx

  • I have experienced the same (CNS involvement in my case but luckily without seizures). I read about a study on Lupoids & the theory that we tend 2 have very heightened senses & r very sensitive 2 things that go on around us. Can't remember where I read it but I find it explains a few things 4 me personally as I've always had a kinda 'sixth sense' & memories of things & don't really believe I have psychic abilities. Now psyCHOTIC abilities, that's another matter....;0)

  • I have had those twice, one before I was diagnosed and one not long after, just as I was starting steroids. I was sure I was going to die, I could feel it and I was so scared! Each time lasted about a week, horrible time. I haven't had those now but I note you connect this to CNS lupus, which I haven't yet been diagnosed with and which terrifies me! I think the steroid treatment got them under control, so maybe you can consider those?

  • Hi Karlyt this is a question and I hope you don't mind me asking. My son had his appendix out a few months ago and post op he had seizures and was unresponsive for over an hour. They also were unable t

    o reduce his heart rate or blood pressure and had to give him oxygen too. He had lots of seizures and when he wasn't having the jerking types he was having flashing in front of his eyes to the point where he would ask us can we see the flashing lights and would panic when we couldn't. He was reviewed by 2 different neurologists and was given an EEG. The eeg was normal even though he was at the time on dilantin and it was more than 4 days from his last episode of seizures. They said he did not have CNS Lupus. How do they diagnose CNS Lupus? They refused to do a MRI head but he had CT head to rule out nasties when he became unresponsive. It is so difficult when we really dont know what caused these things and if they can happen again? One neurologist said he didn't have seizures even though he was taken to ICU because of them and the neurologist was not there to witness anything.

  • Old post and slightly off topic, but.....I knew a lady with MS, and her Mom said her type of MS was giving her premonitions...

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