Does anyone else struggle with Lupus blackouts?

[Raeia]

Last Saturday, I worked my entire shift in a lupus blackout. My last real memory of the day is clocking into work at 10.42 am, and when I 'woke up', it was midnight and we were closing the bar/restaurant. I have no memory of the shift, though from what everyone told me, I was running around, running food and drinks, taking drink orders, making cutlery sachets, fixing coffee, clearing tables and doing everything I normally do. When I woke up, the first thing I did was go to the nearest bartender and asked if I'd worked my entire shift. She took me outside and once I'd explained it to her, she understood. They sent me home, and I called my mom in tears and told her what had happened. She's had lupus for nearly forty years, so she's had blackouts and she understands how scary they can be, though hers never lasted as long as mine do. I was just wondering if anyone else suffers from them as well?

[suzannah16]

oh gosh that sounds awful. I have never heard of this before. I know I completely go blank about things but as far as I know this has never happened to me. hope you find a reason for it.

[maggielee]

Did your mom's doctor ever explore what it is? Memory loss, kinda of fog?Sounds scary & neurological & definitely to be explored by doctor/s.... Hug ml

[bhuebhek]

Hi Raeia, that sounds so scary. I once in a while had blackouts or in autopilot mode. But never really in that long period like you experienced. Do you sleep ok? Maybe consult to a neurologist? I had inflammations in my brain and spinal cord. Since few years I’ve been struggling with temporal memory and speech problems (I’m neuroscientist and was able to memorize periodic table after 3-4x looking at it). I hope you get better soon!

[addai]

Hi Raeia, approx 35yrs ago I suffered blackouts and amnesia, the blackouts meant I went down for a period of time but when I came round, I couldn't remember anything. It was investigated, approximately 5 brain scans as well as other trials and tests, epilepsy was ruled out, several drugs were tried, eventually Epinutin was the drug they found to be most effective. The blackouts lasted approx 2yrs, but the amnesia was a very slow progress. But I still don't feel like the same person I once was. When eventually I was diagnosed with Lupus, butterfly rash on face and constant painful joints and headaches. Once I got this diagnosis, I was told that the blackouts, may have been early symptoms of the lupus as back then, it was still new to some consultants. Thankfully now, by God's grace, blackouts are well and truly in the past.

Ps. Keeping a day to day diary helped me heaps with my memory back then.

Stay blessed 🙌🏾🙏