Has anyone experienced complete loss of awareness of what's happening around them? I've recently had 2 such events where I had no idea of who I was, where I was or what I was doing there. Fortunately, my husband was with me both times and, despite being freaked out by what was happening, he was able to sit me down and patiently talk me back to 'reality'. It hasn't happened again (and hopefully won't) but I have had several bouts of severe vertigo, and visual problems on a daily basis.
Loss of awareness: Has anyone experienced complete... - LUPUS UK
Loss of awareness
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Lizziequink
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I think you should contact your team or your gp in case something needs further investigation. Best to be safe.
Thank you for your message. I saw my GP who arranged for me to have a CT scan which came back clear and she's now referring me to a neurologist. She feels it may be Lupus / autoimmune related but wants to cover all bases. I just wondered if anyone else with autoimmune had experienced the same thing. I did get my eyes tested but there was nothing that would explain the visual problems.
Sometimes a standard optician may not be able to shed light on what has occurred. But your team or GP should be able to refer you for more specialist investigations.
Just a thought. Has your medication routine changed recently or have there been any other changes that could have prompted recent events?
The only change was a bad fall I had last October when I smashed my elbow which needed to be replaced and broke my shoulder blade. Pre-op blood tests showed I'd got Lupus anticoagulants which was totally new. The visual problems, vertigo and lack of awareness have only happened following the fall, so there does appear to be a link.
If it happens again go immediately to the emergency department. It could be a TIA or a seizure both of which do not show evidence on ct after the fact. At the neurologist discuss possible seizure meds and ask about your stroke risks incase the episodes were TIA. TIA are precursors to a full blown stroke often.
Take care xo
Thanks for your advice, which is much appreciated. My GP has referred me to a neurologist and I got a letter from them today asking me to phone to arrange an appointment. Hopefully they'll be able to sort me out.
Can I just say a huge thank you to everyone who offered advice and support to me following my post earlier this week. You empowered me to write a strongly worded letter to my consultant which I had delivered this afternoon and I call in response to it within an hour of delivering it. You all gave me the strength of purpose to take control of my situation x
Hi, Yes, Roarah, and phillippo are right, that is not something to hope it doesn't happen to you again. I had some events, with vertigo, chest pain, memory loss, went to the ER, and found out I have NOH, not a common thing. At first the ER Dr dismissed my symptoms as fantom symptoms, but I knew something was very wrong. Many of us here have had some dismissals by Dr's, but we keep each other informed, and encouraged. I am encouraging you to seek help that is available to you. Glad to here you have someone in your life that can help too!!! Praying for you. peace, blessings thestorm
Thanks for your advice. I've never heard of NOH and, having googled it, certainly some of the symptoms fit but more don't, but certainly worth keeping in mind. I too have had doctors who've dismissed my symptoms but have a GP that I trust implicitly which helps.
Again, many thanks 
Can I just say a huge thank you to everyone who offered advice and support to me following my post earlier this week. You empowered me to write a strongly worded letter to my consultant which I had delivered this afternoon and I call in response to it within an hour of delivering it. You all gave me the strength of purpose to take control of my situation.
You go Lizziequink, Great work on your part for standing on solid ground!!!! That is empowering, advocacy!!!! Congratulations for being pro-active of yourself. What you did will encourage, and help other too. Keep on going and do not stop listening to your own body. We here are all glad to help.😊😊😊! As a nother member here once post "you are a whole human being, not just body parts." I pray the dr's get to the bottom of these events for you. peace, blessings thestorm
Many thanks x
Didn't want to alarm you but think the later posters are right. You definitely need to seek further investigations to ensure your safety. If it occurs again before investigations have been done then A&E is the best place.
If you are a driver, it might be best to not drive yourself for a while.
You should definitely consult Your GP...especially if you drive.
Thank you. My GP has referred me to a neurologist and I got a letter today asking me to ring to organise the appointment so, fingers crossed, I won't have to wait too long. Fortunately, depending on whether you're a glass half full or half empty person, I've not been able to drive since a fall last October when I smashed my elbow, which had to be replaced, and broke my shoulder blade. By the time I'd recovered enough from that I was getting the symptoms previously mentioned. Afraid I'm a bit of a disaster looking for somewhere to happen
Well let’s hope you can now get everything sorted out.......I tend to be a Polly Anna & tell myself it “will be alright on the night”......decided a long time ago worrying about something I have no control over is just too stressful......and pointless.
See the medics ...I’m sure they will have an answer.
Hope you’ve had your last disaster.......take care.
Hi again. I tend to me of the same mindset working on the principle the what doesn't kill you makes you stronger so I'll just keep on trucking. There's a lot of people so much worst of than me. Thanks for all your support and advice
Hi Lizzie, I reckon having broken my neck in a car crash, having breast cancer, then RA for many years I’ve had plenty of practice in getting sorted,& as you say there are lots worse off.
I tell myself ...been there ...done that ....so it must be all OK from now on!🤪🤪🤪
Hope you get your neuro apt quickly.
Can I just say a huge thank you to everyone who offered advice and support to me following my post earlier this week. You empowered me to write a strongly worded letter to my consultant which I had delivered this afternoon and I call in response to it within an hour of delivering it. You all gave me the strength of purpose to take control of my situation x
Please see you doc- ASAP-get APS antibodies, and r/out TIA, mini stroke, seizures and so on...
Good luck!
Thank you for your reply. GP sent me for CT scan which was clear but have today had a letter from neurology dept asking me to phone them to make an appointment with them so will hopefully get to see them very soon. Thanks again
Can I just say a huge thank you to everyone who offered advice and support to me following my post earlier this week. You empowered me to write a strongly worded letter to my consultant which I had delivered this afternoon and I call in response to it within an hour of delivering it. You all gave me the strength of purpose to take control of my situation x
Thanks for your advice Phillippo. In the past my BP has always been on the lower side of normal but a few months back I had a routine BP check which showed it was much higher than in the past and I was put on medication which has brought it back to the normal range. My GP has referred me to a neurologist and I got a letter from them today asking me to ring to make an appointment. Thanks for your suggestions, they were much appreciated.
Speak to your team as well in case someone there needs to be aware that you may need anti coagulation therapy. Different teams usually tend to prescribe for certain events. If you cant get seen urgently then see if you can speak to a nurse on the team or leave a message with a consultants secretary.
Explain why you have called.
Many thanks for that. I've going to follow your advice. Sometimes we don't think we're important enough to make a fuss. I sometimes suspect they think that since someone is still working they can't too bad.
When I lost my hearing others were telling me to seek urgent specialist investigations. I thought whatever was the problem would just pass, and then normal service would return. I cant say whether quicker action on my part would have had a different outcome. But sometimes we do tend to dismiss something happening to ourself when we would advise others to take a different course.
This may be one of those occasions.
That is so true. I tried yesterday to get hold of the specialist nurse I've always been able to contact if I've had concerns, but all I got was an answerphone message to say there was no-one available to take the call but if I left a message someone would get back to me but they couldn't guarantee when and if I had concerns I should contact my GP. Just not good enough, but enough to encourage me to take direct action. I have just written a strong letter to my RA specialist listing my symptoms and expressing my concerns that the appointment with him has been put back from September of this year to next May, and copied my GP into it. I will hand-deliver it this afternoon. It's time to stand up for myself. Thanks for all your support
If you dont get a call back, leaving a message with the consultants secretary might be a worthwhile course. It's no guarantee that he will actually be available on the day, but messages will get delivered and he may schedule an earlier appointment or get the nurse to contact you.
All the best.
Would you believe I got a call from the specialist nurse within a hour of delivering the letter to say she was sending out forms for blood checks and my appointment was being brought forward. I can't thank you and everyone else who've given me support on this site since I posted the question. Please keep me posted about how you get on with your issues. Many thanks x
My deafness issue is now permanent. Happened a good few years ago. I used my tale to help you acknowledge that your issue was indeed not something to just be dismissed.
I hope you have a successful outcome
Can I just say a huge thank you to everyone who offered advice and support to me following my post earlier this week. You empowered me to write a strongly worded letter to my consultant which I had delivered this afternoon and I call in response to it within an hour of delivering it. You all gave me the strength of purpose to take control of my situation x
This happened to me when my BLood Sugar was very very low its an awful feeling. Make sure you eat regularly and with the heat stay hydrated
Thanks for that Wittycjt. Episodes tend to be after I've eaten but certainly worth considering. Much appreciated
Hi I had this once few months back went to doctor's got back in the car sat there didn't know which way to go home it was very frightening look through this site and looked up information on lupus and they call it brain fog hope this don't happen again but know doubt it will struggling with this lupus xx
Thank you Cjgi.. My GP is already talking about Lupus based on the number of other symptoms I have but the lack of awareness was something she hadn't come across before with it. I have an appointment with a neurologist at the next month and an appointment with my rheumatology guy the following day so fingers crossed I'll get to the bottom of things. The 2 incidents were very frightening and I really need to know what's going on. Thank you again for sharing your experience. Best wishes, Liz
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