Sticky Blood-Hughes Syndrome Support
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Brain fog has taken over completely!

I have been dreadful the last three weeks - hoped would be better after a week's holiday, but no luck. Going to see the GP on Friday as am experiencing the same cognitive problems as I had after my stroke in 1998. Don't think (hope) it's anything nasty but feel it's better to be sure.

Poor old Barney the next door cat would have gone without his dinner this week if he didn't come and find me! And hubby is going to have to go and get bananas and milk which I forgot to get earlier - although luckily I remembered the chicken for dinner! And as for the safe place where I hid the spare garage key....Then there was the frying pan I couldn't find which was, of course, drying on the sink... etc etc etc.


11 Replies

Oh dear, I hope it settles down for you, and I hope the GP has a good listening ear! MaryF x


Hi Caroline

It's one of the horrid things about Aps, mine worse when inr is too low. I hope yours settles soon hon, hopefully your gp will help, just got keep pushing till they listen, you know when things are not right. Good luck with gp hon.

Take care gentle hugs love Sheena xxxxx :-) :-) :-)


Oh dear hun....unfortunetly we can certainly all relate to this! Mine is too worse when inr is low....even tho' mine is 4.9 at mo' + is has been bad recently....could be because I've not been well?? It's not nice + can be embarrasing at times + other times funny....especially to others! I know my family thought it was funny a couple of days ago when I was getting changed into my scruffs so I could go + clean pets etc + I couldn't find my trousers?!!....10 mins later I found them at bottom of stair rail?! I still have no idea how they got there!?!!! My speach is no better!... I went to say leg exercises to my Mum the other day + it came out as egg lexercises!!!

Hope you do have a good doc' as they have to understand this is all part of Hughes....they didn't tell me this in the 'small print' 11 years ago when I was diagnosed!!!

Hugs xx


Hi Caroline! I wanted to leave a message for you....but I've forgotten what I wanted to say!!! Yours, foggily, Larraine x


Caroline, I can also sympathise with you. I am currently on Rivaroxaban instead of Warfarin and I dont think it is thinning my blood enough. My brain is very foggy at the moment and i feel sorry for my long sufferring husband. In the last couple of weeks i have, burnt toast a couple of times by just forgetting it, cooked half a dinner 'cos I forget the vegetables, called my neighbours children by the wrong names etc etc. Luckily we can laugh about those things, but when my husband was away last week I think I forgot to take any of my tablets, trouble was I just wasn't sure. That's when it gets a bit more serious.

Anyway, back to St Thomas' next week so maybe they can do somehting.

Best advice I can give is "keep smiling" and remember you are not alone xxxxx


I often forget parts of the dinner but then I have to cook 5 variations on the meal to suit everyone's diet so not surprisingly I forget something. Usually it's mine that I get wrong. So frustrating when I spend so long making the meal only to drop part of it when serving. Or the times I go to the supermarket and come home without the main item I went for. Or get totally lost in town when i go shopping ....just can't remember how to get from A to B. The constant time warps when going to do something and then forgetting what it was and the list goes on.

I feel your pain.


The brain fog can be awful, i sometimes feel stupid for forgetting things or keep repeating mysrlf, or even be half way thru something and forget what it is u were talking about, im awaiting more tests at the mo to see what could be effecting mine so xx


Lists! Lists! I have to make a list when I go to the grocery else I won't buy the very item I went for! So I urge all of us to make lists!

But then don't do as I do and leave that list at home.

--but if you went through the ritual of writing things down you may be more apt to remember.

Or not.

Life is more of an adventure for some of us. I remember --yes I do remember some things well --when a trip to the grocery was so simple. Now it's fraught with drama, questionings and existential angst: do I really need to buy another box of tapioca for the cobbler? I don't use it aften, so if I already have one, purchasing another would be wasteful. On the other hand --did I have to pitch it when I battled that moth invasion last month?

Existential questions about tapioca. Only us Hughes patients have such profoundly meaningful grocery trips.


and that reminds me. Blackberries are in season. Do I need tapioca for the cobbler? I must make a list.


I am so glad to read the above, whilst its not plesant, I know now I am not going mad we all have the same problem with Brain Fog - its a pity not more people understand it - sorry Caroline you are having such a bad time - I seem to be stuck in the same place have not stopped crying for 2 days and have never been so confused - but now I know it is all part of APS - take care everyone.



Hi Rebecca

Sorry you feeling so low!! Just wanted send you big but gentle hugs n love Sheena xxxxx :-) :-) :-)


Ah bless, dont worry brain fog is very common in this condition. My GP told me that I had too much going on in my life, just goes to show how little he knows about APS. Really thought I had dementia but it has got a lot better now but seems to return at any time.


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