Sticky Blood-Hughes Syndrome Support
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Brain Fog

Hi All,

I have been talking to other people on other Forums and a lot of people have issues with Brain Fog and Memory issues and we have been talking about how you get around the memeory issues and are people really supportive on this .

I found my wife has now got that look that when i ask her something and i have asked her more than 10 times she rolls her eyes all done fondly but it must be annoying.

Do other people find this annoying and what ideas do you use to help you over come it, i normally carry a note pad and pen with me and i live by a calender on the wall.

Just thought it would be nice to disscuss how we overcome some of the symptoms or just work around them.



14 Replies

Hi Paddy, I have to write everything down and this works until I forget where I put the list! My calendar (diary) is my best friend and even then I forget things.

I have always worked the same shift and now working at different hours dependingon the day so I will have to be paying more attention to that, as I fear I will forget when I am supposed to be in. I have already gone in on days I am not working by mistake!

I haven't found a real cure or treatment for it yet but would love to hear what others have been doing to help with this as well.


Hi paddy and kristina

Another helpful topic. I too make lists and lose them. I have notice board in kitchen Thats overflowing with appointments, for everyone. I have a diary and use memo ap in phone. Still forget things tho. But keep muddling through.:-)

take care gentle hugs love Jessielou x x x:-) x x


Hi Paddy

For me its more a case of getting stuck with words when I'm talking, kind of forgetting that specific word (which could be a very common one in everyday use ) and try to find it in my mind.....rather then forgetting appointments of things to do. HAve you ever experienced this?


Hi Carla

Never mind forgeting the words (which I do) I forget wot I'm talking about mid sentence, I mean completely n if I don't get prompted u can forget the conversation all together but, it might come back to me suddenly a lot later (that can b quite funny sometimes). I use a diary, calander in the kitchen and diary in mobile< talk about cross ref and alarms on me fone!!

luv Janx


Hi Paddy.

I have to write things down all the time and I also use a small dictaphone for my work. Someone's name can be told to me and I forget it in litterally seconds! So annoying, But the recording of importnat thing shelsp and of course making notes.

For me names are the worst to remember but arguments can occur at home when "You were told that" or "Why dont you listen" or "Get your hearing checked" Arrgghh it doesnt get any better does it!




ooh no my spelling,, apologies once again! It looked correct when I typed it out above!




Hi garry

not worry my spelling rubbish, my speech also awful, got try do French speaking assignmnet for open uni degree. Struggle speak English not much chance French gonna come out right. Oh well, wiil try. Hope you feeling ok tonight.

Take care gentle hugs jessielou x x x(sheena) xxxx:-) :-)


Hi all,

I am glad i am not the only one who uses a calender, diary, noticebaord, phone and note book i feel like i am a walking office lol.

I found that my speach gets muddled when i am tired and if i am not full concentrating it will not stay at all i just stare at the person blankly and they have to repeat themselves. Again if i do not concentrate specific words or names even when i am talking just do not stay in head like Carla has said.

I also found that like Garry said when i write things it looks ok to me then i reread and it does not make sense i find it takes me a while because if i rush through it will be a mix of clear and muddled.

Have any of you been diagnoised with Dyselxia as some of the people i have met with APS have this and i was woundering if this is just a fluke or if it can be linked to APS? Just a thought!



Oh family & friends are that used to me speaking back to front, words wrong way round, forgetting where I was in conversations half way through etc etc!!! they either just smile and let me continue or if I have realised what I ve done I will joke with them....but yes deep down it does get you down but I dont let them see.

I too write most of things down to try to help me remember every day projects.

It is like we have Dyselxia but with a difference I have often said that too!

Nice in a way to know we are not alone in this jumbled world of ours xx


My brain fog is at its worst when my INR is too low - if it gets really bad then I test to see if my INR has dropped. Doesn't help that I had a mild stroke 13yrs ago! I usually remember where I am supposed to be or appointments but am constantly checking to see if I am right. But I lose words or can't get the one I want and it is embarrassing. Nor can I cope with conversations that don't go in a linear way. I often misread words and am always crossing out when I'm writing as I make daft mistakes. I used to teach children with dyslexia and similar problems and it gave me a real insight into what it is like for them.

It is so comforting to know that I am not alone, especially as my 90yr old mum has alzheimers and on a bad day I think I am heading that way.



I too struggle reading newspapers - sentences dont make sense, have to have reminder alarms on my fone to remind me to look at my diary - my 5 yr old is always laughing cos i get muddled!


Hi, All.

Apparently the pre described condition you have dubbed "brain Fog", is just one of the common factors that I have observed in my daughter who has APS.

She has said it's like being drunk, even though you've never had a drink.

I am wondering if it could possibly be due to a lack of Oxygen to the brain, as it seems to occur when INR's are either above or below the "norm"range.

Being that "normal"INR would mean that blood oxygen levels are normal,

any deviation from this would indicate low blood oxygen.

Most docs should be able to explain what the likely ramifications could be.

Given that this has continued for most of you for some long period of time, the collective damage caused by this could be quite significant.

Just something to ponder.

Thanks to all,

Wayne L


I know these comments were left some time ago, and I relate to a lot of them since being diagnosed with APS in February - I can put up with the forgetting little things all described above, I was also coping with the bouts of slurring of the words and taking time to get them out. But I am now so upset - I was out with a group I am involved with Volunterily on Friday evening, for a number of hours I was fine, I was working away with them - then total blank, I can remember some things and unfortunately I cannot remember others - its as if I entered a phase where I was drunk - or off balance - these people would not know of the seriousness of the condition or anything about APS other than I have been i'll and they are now making such an issue out of my 'state' on the night that I am so so upset - I have explained to the Senior member of the group - and whilst he says he understands it feels as if the lynch mob is out - how can you explain something to people who just want to think you are drunk..........................its so so hard am really upset dont mean to moan but if someone could shed some light on this. as I write this I am now in tears - i feel so stupid.



Hi, Rebecca.

So sorry that you are having a bad time of things right now.

I think it was Kate who posted a letter written by a patient of Dr Hughes that explaned her situation very eloquently and clearly.

It was directed to her friends and family, in an attempt to help them understand how she felt and how they could help out.

I'm sure that if you can find this on here and distribute it to the other members of your group, they will understand just what it is you are battling against right now.

Hope this helps.

Wayne L


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