Last Sunday I was talking to my sister and she asked me something about the little shops that are just down the road from where we live. For about 5 seconds I stared at her blankly then said "I'm just trying to remember where we live". She said "You know, those little shops just down from you?". 5 more seconds of blank stare and I said "But where do we live?". It was then her turn to stare at me very blankly!!!!
It would have been a good 20 seconds or more that I COULD NOT remember where our house was or even picture what out neighbourhood was like. It scared me!
I have brain fog a lot but this was worse, somehow it seemed more sinister. Does anyone else suffer from momentary total memory loss?? I've been wondering if it means something more neurological that needs looking into, does it sound likely or is it just something associated with lupus?
And I'm only 31 so shouldn't be at risk of dementia!
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1985mum
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It could be "sticky blood" in your brain. You can try low dose aspirin and see if it improves your memory. Also, do tell your doctor about it. once I was something like that for three weeks. They didn't find much in the tests at the time. Later they found an antibody for APS, but at the time they put me on heperin in the hospital and it perked me up quite a bit. I did have a bit of it when I was younger, but plaquenil cleared it up then. Do you have migraines. Migraines can cause similar symptoms, too.
Thanks Ann. All my antibodies are negative. I think that is what is putting doctors off making any dignosis for me despite my ana being 1:160. I will definitely be telling my doctor because I wouldn't want to try any kind of aspirin without medical advice because I have a history of ITP.
I don't really want to diagnose you. I mostly wanted to reassure you that even after 3 weeks of really intense brain fog, nothing can be seen on my brain. (I actually looked at my last scan and saw I did have one small "white spot," but it wasn't even mentioned by the radiologist.)
However, I have had episodes of petichiea, and ITP is actually a symptom of APS. Also, the antibody they found was called Phosphatidylserine AB – IgG, which isn't often looked for.
I ended up treating myself for APS 2 1/2 years before being diagnosed with aspirin. I sort of think that anyone with brain fog should try aspirin from my own experience, but I'm not a doctor.
Thanks Ann. That is very interesting what you say. I'll be asking my new doc about that antibody. Although my platelets are relatively stable at the moment I am getting petechiae on my arms. Worth a phone call I think.
I did not know that migraines would cause this issue. I was dx with 3 different types of migraines. I also have fibromyalgia which causes it too. Thanks for the info!
My oldest GP had suggested I had atypical migraines. Migraines can cause all sorts of weird neurological symptoms. When I had migraines, my memory and concentration were completely shot, but it would go away after the migraine ended. (Both APS and migraines can change blood flow to the brain. Migraines are also a symptom of APS.) In the 80s my rheumatologist suggested that I take aspirin daily for my migraines. He didn't explain very well why, and I was already taking ibuprophen, so I didn't do what he recommended. Aspirin and ibuprophen are both NSAIDs, but aspirin reduces blood clotting in a way that other NSAIDs don't. By the way, Dr. Hughes believes that many people with fibromyalgia actually have APS. If aspirin doesn't work or causes side effects, stop taking it, since we don't need meds that don't help.
It means antiphospholipid syndrome. It is called "sticky blood" or Hughes Syndrome. Many people with lupus also have APS. Some people have primary APS. Many symptoms that have been ascribed to lupus are actually symptoms of APS, such as blood clots, miscarriage, and others.
I sometimes have these moments but I do have Fibromyalgia and I have been told that this can happen,rather interesting was the other day,I wanted to visit a store locally and could not remember the name, I could see the store in my mind also the location, so I asked my husband if he knew the name, and he seemed to have the same problem,but he has PMR it he seems to have moments like this also, I dont know if Fibromyalgia and PMR are related
I forgot my social security number and my wedding anniversary. I couldn't believe something I knew for my whole life and wedding for the last ten years was gone. Sooooooo frustrating!
Hi I have ITP and was advised that baby aspirin in small doses were fine as long as your platlet count is under control. I've started to take this format migraine with small doses of ibuprofen it helps a lot but I don't take them often just when the migraines are unbearable
Think it hapens to us all at some point, stress or not feeling very well plays on your mind without you knowing it. I drove to the end of the road last week and couldn't remember for a good 30 seconds if I should turn right or left to go to our department store. Re lupus yes from my experience I would say it is brain fog so much going on. If I were you I really wouldn't worry about it at your age, your mind will have been somewhere else.
I forgot my PIN number and left a gym bag on the benches in the gym changing room. I remember turning around and looking at it and thinking, "Oh, someone has the same gym bag as me!" I haven't seen it since and that little incident freaked me out! The first one happened when I was anaemic. I suspect I am becoming anaemic again. Also worth getting your thyroid checked.
Yes this has freaked me out too! I had a thorough work up 3 weeks ago, my new doctor ordered a squillion tests and when I went to get them done I had 17 tubes of blood taken! The rbc, thyroid, vit d, vit b etc were all normal. Wcc, neutrophils were down and esr was slightly raised but that is nothing new for me. I think I will ring my new doc tomorrow and let him know and try the aspirin others have suggested and see if it makes any difference.
Yes that's very familiar. Or listening to someone tell you something and they might as well be talking a different language because because you don't understand a word they are saying.
So do I, and I find it hard to get the words out clearly!! Sooooo!! Frustrating!! Your not alone!
Ahh I know how you feel! Sometimes...well quite a lot, I forget what words I'm trying to say. I struggle to recall things, friends and family say remember this...umm no 😩 I keep driving and forgetting what gear I'm in or what to do next...scary!
Several of those who have commented on episodes when the brain does not function normally give an account which could be considered to be absences and should be investigated and considered for treatment for partial seizures (electrical problems in brain) . These are quite often treated as a circulation problem with aspirin but before that diagnosis is made and treated require specific consideration of "why" absences and "could it be seizure activity". If due to Lupus if may need extra treatment for Lupus but more often will not be part of Lupus but will need investigation for other causes and a trial of treatment with medication as used for "typical" epilepsy ie with falling down fits can result in episodes stopping or being less frequent. A failure to remember "things" eg names is often experienced as people get older but this is different to episodes when there is "absence" as described. Important to discuss symptoms with a doctor and request consideration of whether new brain symptoms are due to partial seizures.
I have had the same thing happen to me, memory loss. Well my research shows me that my meds can add to that. Life has shown me my age, stress level, and sometimes there is just so much going on and the brain takes a break. It doesn't have to early dementia. I've seen my mother go through that disease. The brain might be saying slow down and relax.
I had similar memory loss last year when I began to be poorly. I've since had diagnosis of possible sjogrens. Nobody can explain my memory loss.
It is very scary. I'm 46 now so hopefully too early for dementia too but I found myself alone at the end of the street where I live feeling totally lost, couldn't recognise the place or remember where I was going or how to get there. I couldn't visualise what was round the corner. Similarly I couldn't remember how to get across my small town to a particular cafe. At the same time I stopped driving and became nervous passenger because the road just didn't make sense.
I've since put it down to extreme fatigue ... I couldn't find words about that time either and if I'm over tired now that comes back.
It is very scary and I found just standing still and taking a few deep calming breaths helped - panicking made it last longer.
Take care and I hope it's a temporary issue for you but there's no harm mentioning it to your GP/consultant.
I have and I have to agree,bits very scary. I was driving in the car with my best friend and her mom. All of a sudden I couldn't remember who my best friend was. All I could think was that I knew her but I didn't know who she was.
It took a little bit before I remembered who she was and then I was fine the rest of the night.
I think this happened to me because I hadn't slept the night before because my legs hurt so bad.
I am all too familiar with memory loss. Before I was diagnosed I was having really bad issues with it. For example, I worked at the same building for 3 yrs, I began getting lost on my way home. I worked 2nd shift and got off work at 11pm. Sometimes I wouldn't make it home until 1 am!!! Sometimes I had to call a friend to help me, which was very difficult when you tell them your lost and they say how can I come get you if you don't tell me where you are. I would have to go to a gas station or store and ask what town and street I was on. Sometimes I would just sit and cry because I didn't have anyone to help. It seemed to happen a lot when I was tired or stressed. This is when GPS was not a popular thing and there were many folks who didn't even have a cell phone yet. GPS was for the rich, and for salesmen and business ppl only. I did get one (eventually) and now I use it nearly every time I go out, (just in case). I felt so stupid, and the sad part was when I told my Doctor about it, he just gave me a funny look and ignored me, telling me I need to see a therapist!! Very degrading!! I try to stay away from toxic ppl and get more rest and it still happens now and again. The plaquenil seems to help too. Try to be calm, (I know its difficult), and get more sleep and/or just quiet time. Too much stimulation isn't good for me, like TV, computers, cell phone, noisy places, etc. I have actually had some ppl say very mean things too. I just learned to stay away from negative ppl and focus on my own health. I hope you seek some resolution because I know its really scary.
Thanks for the reassuring words sr1986. It makes me feel better knowing I'm not alone. I'm not sure how much more I can slow down though. I spend most of my day chairbound and my husband does most of the housework and looking after the kids as it is.
Yes! I have had the symptoms you describe for about 15 years (complete amnesia lasting between 20 -45 seconds) but mine generally occurs on waking up. I also get moments of not being able to find the word I want to finish a sentence but I've learned to compensate with other words (or sometimes just changing the subject).
It seems worse in stressful periods and, if I can force myself to relax, fades away to allow my memory to "click" into place. It's never worsened but it's always there, lurking. Of course you'll monitor this closely but don't panic. I've been able to exist "normally" with this issue (hard to know what to call it, no doctor has ever put a name to it except to assure me that it is not stroke or dementia...).
I was 36 when mine first appeared and had just been through a traumatic experience (family death). I hope this helps you and, if you do find anything else out, please let me know!
Hi. Welcome to my world. I have constant daily brain fog and yes there are times I have no clue what the answer should be, or what I am trying to do or say. I appreciate everything that AnnNY has said, but some people are intolerant to aspirin, like myself and can cause the stomach to bleed. Please see your gp.or Rhuemy before taking thus course if action. Good luck.
My 2nd name is memory loss. I have gone to hospital twice thinking i had an appointment. I get lost in the middle of a conversation. I never remember how much i bought an items. My mum has to go with me to my hospital appointments bcos i forget what i meant to tell my doctor. Even with the sat nav on i always drive to the wrong place. When it started i was told it was a side effect of steriods. So i guess it comes with the complexities of lupus. But i think i need to talk to my drs about my memory. Relax my dear bcos alot of us are in the same boat.
As. An RN I can tell you I decided to look into nutrition to help me with my physicial and brain fog moments.
I am using Boonerboost. Named because of rhe baby bomers are facing the down hill deficit. It has help my memory and energy levels greatlym iI don't have the pain from my RA.
Check it out look at their video to understand how it works. Plus you can call them and ask questions about your own needs.
Yes I can also relate to this, mine is talking, mid sentence I totally forget what I want to say. I forget things people have said to me only 2 mins ago. I also cannot follow a TV series, in the fact that if they didn't show a preview of last week I wouldn't know what it was about, and then sometimes still don't. I can't remember how to spell aswell, thank God for predictive text lol. I have to have alarm reminders on my phone for everything.
So I shouldn't worry too much about it, I think alot with autoimmune disorders have the same problem. But still mention it to the doctors, not as if a lot of them take much notice anyway lol. In my experience if you are not crawling into their office they think, "ar you are alright" lol
Take care, I hope you don't have to many episodes xxx
Thanks daisy. Suddenly not being able to spell is very annoying! It has always been one of my strong points but alas no longer!
Thankfully my new doc is one to take note of the small detail and I'm confident he will get me the help I need eventually. He told me I'm one of the most complex he has seen and he specialises in complex cases!
I am glad you have a decent doctors, I have been seeing my rhumy since beginning of 2013 and at last he has decided to listen. I am sure he thought I was an hypochondriac, that is probably spelt wrong didn't come up on predictive text lol xxx
I think a lot of us can relate to your post, unfortunately. I am 41 years old and I have SCLE - subacute cutaneous lupus. I have suffered various types of headaches for years and brain fog. I have had positive bloods - ANA, ENA and Anti-RO - but never Hughes Syndrome. The brain fog for me (confusion, impatience, memory issues, lack of concentration) can be with or without headaches. I have forgotten people's names (took me nearly 3 days to remember the name of one of the teachers in my daughter's school), the names of objects, how to spell even simple words, where I have put things, what I am supposed to be doing at that moment in time etc etc. It can be very embarrassing and scary. I have also experienced twitches in the muscles in my legs and stomach. My Rheumy has never really talked about my headaches and brain fog in any detail, but recently I was having a frank discussion with one of my GPs about how I was getting on and she said, "well, when someone has CNS involvement with their Lupus, like you do...." I guess I had always known that, but hearing your GP say it out loud was a shock. (In the meantime, I have been diagnosed with a syrinx cyst, following an MRI on my spine and am waiting to see a Neurosurgeon. I guess I will then find out if the cyst is related to my Lupus and what he thinks about the rest of my CNS related symptoms). Make sure you document these symptoms, so that you have the details to discuss at your medical appointments. Good luck.
I get all those things you're talking about and I've often wondered about something CNS going on. I will be letting the doctor know about it all. He has been very good to me so far.
Hi there, I had a very scary moment years before I was diagnosed with undifferentiated connective tissue disease. I got stuck in a car park in the woods because I couldn't remember how to drive forwards. An elderly couple were trying to assist and I can remember saying to them over and over " i,ve put it into 'R' but it just keeps going backwards! (As I was getting nearer and nearer to a tree. It must have taken me a good five min to realize I was in reverse. The old couple just stood and looked at me like I was totally mad.i mentioned it to my rheumatologist but he didn't seem to think it worth looking into. My sister has anticardiolipin syndrome (might not be spelt like that) and she once forgot how to spread the butter when she wa making sandwiches and once just plain forgot how to put one foot in front of another when she was coming down a mountain side in oz. Luckily her husband was with her. She has to have an aspirin everyday and has tiny wiggly marks on her skin which she docs in Oz told her were tiny clots.I was tested for it as I was told that due to my condition I could go on to develop it. I looked both diseases up and they did seem to be quite closely linked. I tested negative although I had experienced that wierd episode in the car. It is all very mysterious and scary isn't it but you are no alone. I have migraines and had a scan for them but all clear. Was just told they are probably caused by the connective tissue being damaged. Wishing you well.
5 minutes! You poor thing. You must have been in quite a state by the time you remembered. It is a scary thing. Thanks for the kind words. Funnily enough, I don't get migraines or even headaches really so it's not associated with anything like that.
I have the same problem but I cannot take aspirin because I am on warfarin and I can't take anti inflammatory pain killers because I have lupus nephritis x
Yes I no what you talking about last week I left my phone first time I was on phone at my daughter law house when left my boyfriend said were phone I said in my pocket book then left in hospital them left in coworker car three time last week left my phone so I no
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