Memory

[JollySailor]

Hi folks, I read that a side effect of APS can be impact on memory. It’s hard to put a date on it, I was finally diagnosed Triple P a year ago after strokes in 2021 and 2022, and I don’t know if it’s other reasons, but if I don’t complete a brief diary every evening of what I’ve done during the day then by the next morning I struggle to recall what I did, without getting prompts from others or checking my calendar / schedule. Does this sound familiar to any other APS patients? Cheers.

[HollyHeski Administrator]

Brain fog is very common but I would get your B12 checked, as when mine is low I have the symptoms you describe above.

[JollySailor in reply to HollyHeski]

thanks, I’ll take a look into B12

[Lure2 in reply to JollySailor]

Are you diagnosed triple positive twice (kardiolipinantiobodies, Beta-2-Glycoprotein1, Lupus Anticoagulant) by a Specialist of autoimmun illnesses who works daily with these problems and who really knows APS. That is exstremely important. Try to learn as much as you can about this very rare illness.

We need usually Warfarin at a rather high level (perhaps 3.5-4 of INR). I am triple positive with very high levels also and have had this illness for around a bit over 20 year now. Often a lot of microembolies and showing like neurological symptoms, also memory problems of course.

Read Kay Thackrays books; she has APS and writes about all the different symptoms she has got. Prof Graham Hughes has said himself that her book is very good indeed.

I have been on this site several years earlier. I am too old now to continue but I still know that Warfarin has been my life saver.

Learn about this very very rare illness and get a Specialist. That is what we have to do.

Kerstin in Stockholm

[Greenmil3]

that sounds exactly like me I have lost all recent memory but can remember childhood but been fully checked by Queens square and no dementia or Alzheimer’s so they were not interested.

[Annslack]

I definitely have this . My mind seems blank but then when I see things in the diary it comes back to me.

[GinaD]

I too was triple positive and was finally diagnosed after what MRIs revealed were strokes. My wonderful neurologist attributed my slow recovery to my continued routine of reading , writing, walking and hiking, and listening to music.

[Stella]

I struggle all the time with my memory. Names constantly evade me and it can be quite embarrassing at times. I find it best to be upfront about it. It also helps but I have been married to my husband for 50 years and he can remind me of places we have been and things that have happened. Given time I can usually remember something about a particular event. I also Have times when my mind goes a complete blank.

[LindaMorrell]

yes I can relate all of the above over the years. It does get very scary as you think you are losing the plot. I used to blame being blonde as a joke but believe me at times it can very embarrassing and upsetting.

I now have a lady who helps me find ways to remember. Like drawing a picture of something absolutely crazy which is my shopping list. I drew a shopping list picture on my apple notes with my finger. It’s hilarious to embarrassed to share. Can you believe I can still remember the items weeks later from that picture.

Remembering names was very embarrassing. I now relate names to funny visions. Like Wally

I had to remember a young man called Wally young Wally’s hair was so neat and well groomed I related his hair to my neighbour Lawn. I imagined this perfect lawn sitting on young Wally’s head. My neighbour with this neat lawn is Wally. So I now always remember the vision of this young man with the neat hair as WALLY.

Also when being introduced to someone I now repeat their name 3 times. Hello john

John how has your week been. John it’s been nice meeting you. That sort of thing normally works for me.

Photos help me remember what I did yesterday.

Crosswords wordles Anagrams reading are all working for me too. Doing daily crosswords indicate how my day is going to be. If I do well with my crossword things are usually good. If I am slow at the crossword I think, today you need to be steady slow down and take time on your tasks. Double think about not doing a difficult task, like driving a long way.

Luckily when I do forget I try and make it not an issue. I tell myself your phone will turn up or your glasses will be where you left them, you will bump into them any minute Now . Yes I then bump into the glasses on the bathroom shelf or near my book or outside on the table.

Trying not to stress about any of these issues is helping me greatly too.

Support from family and friends makes life a bit simpler. Prompts like did you take your warfarin or a question how much warfarin did you have today. I am glad of any prompts lol helps keep me focussed on important things.

Appointments remembering times and dates

Aghhhh I now use calendars and my phone

Good luck to all with brain fog Never ending task is remembering but stay calm and try not to worry .

[MaryF Administrator]

Hi, you are correct yes, but you need to check other co factors, low D, low B12 and low Thyroid function and even Low iron can contribute to feeling brain foggy! MaryF