Sticky Blood-Hughes Syndrome Support
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Need help with memory and cognitive ability. What helps you?

I never realized how much APS has affected my thinking. I'm slipping and it's driving me crazy. It has been a while since I have had to use my brain I guess. I don't really understand but I knew that my 'math' skills have been fried but I never realized how much my thought processing has been affected. I am easily confused and distracted and there are times I have a hard time even carrying on a conversation. Since the TIA I have had intermittent blurry vision, a lot of headaches and funny turns lately.

I used to be well spoken, have a good memory and great cognitive abilities. I NEED to be my old self again to keep my job and sanity. What can I do to help clear this fog? Omega 3, increase water intake, coconut oil, cardio workout.......? I'm open to anything even theories and hunches lol anything that might help really. Does anything help you?

8 Replies

Yes I have been the same over the years after cardiovascular events. I put the month calendar page on front of frig, and put all notes on it. I write a diary every day- even put my Blood Pressure reading at bottom. After 2nd cardiovascular event- had to have speech therapy for some time, and I realised I'd forgotten some body part names. I did a lot of typing of anything. I taped my stories, reading them to myself. The exercise has been important- I have a Low impact aerobics CD- an hour and just love it. as it is something familiar.Try and get out in your garden- love my garden.Talk to as many people as you can- play cards, even bellydancing, join a writing group, visit friends, especially those with medical probs. Join other lupus/aps forums. Be a volunteer- I joined a Visiting volunteer years ago, and she is a great friend now to me. Get out to the movies. I am very lucky to have survived, and I will keep going. All the best in your endeavours


Hi Sassy! I am exactly the same as you, but I take some comfort from the fact that I KNOW how bad I've got, so it can't be that bad! Part of mine is brain injury after stroke but it's also the Hughes Syndrome. I've worked with people in the past with stroke and mental health problems, and they often didn't realise how their brain function had changed, so I figure that if I know I'm slipping, I can do something to improve it as I can measure the improvements.

I play games against the clock (not all the time!) like Sudoku or even Solitaire, to try to keep speed up. I am currently trying to set up my own small business (planning stages) and have a schedule that I try to keep to for research and I enjoy having a purposeful goal that I want to work towards.

I am housebound, so my life revolves around my laptop whilst my wonderful husband is at work - he's really supportive and treats me as if I am still working when I report my daily progress back to him. Most of all, we laugh a lot at the silly things I say and do, so it's not a disability - it's just the way I am.

Yesterday, I had one of those instant powder skinny latte coffees and it was awful, so I asked him to take the remaining packs to the girls at his work. Trouble was, I was SURE it was called a MINKY coffee, so today, he has taken them in to the office, told them they are MINKY coffees, and that's what they are all calling them! (I used to work at the same college as he does, so know these ladies!) I feel as if I'm still part of the real world, if only in a silly way...and I've made some people smile today.

I try to stay positive, but I do feel sad for the loss of the person I used to be, but that won't make me better and will only add depression to my list of ailments. Sorry about the long rant, need a cup of coffee now, but not a minky one!! Larraine xx


O I know exactly how you feel sassy - me too ! Mostly with the speech I just laugh and friends see it as just a part of me -but at work especially I have noticed it has made me change my personality a bit - and I do feel embarrassed sometimes. Ironically I am a speech and language therapist so I get particularly anxious when i have to do training or give presentations. Anyway practically I would say the same as others -relaxation, meditation, yoga ,pacing, not being on computers too much, exercise - but a lot depends on whether you are on warfarin or not - i am only on asprin so am free to try other complimentary supplements - I find powdered barely grass, beetroot juice and tumeric plus lots of fluids has some effect but basically when in a 'hormonal phase' I am still all over the place and I just think i have to get on with it and try to capitalise on it if a good phase comes along !

I would be interested to get more info on theses aspects.

All the best


I think keeping hydrated helps a bit being on the right medication eg probably Warfarin / Clexane.

Some of the things i was given I think by the psycologist see my memory not great

It list a list which helps you to remember Names,/rembering when you have to do something/, remembering where you put something,/ how to get somewhere

and what people have told you., really tired this morning but you should be able to find these things on the web.

Mostly common sense. But one thing I found helpful was saying out loud in my head when I had done something such as switching off things. Will try and copy it later if I can if you want.

Horrible isn't it I feel like taking my head off sometimes and shaking it to get ris of the cobwebs.

Karen xx

hope this makes sense


Thank you for your responses, I know I am not alone. It's been a tease I'll feel good for a bit then terrible, I had a migraine then felt tired with aches and pains for a week. Then felt great Sunday-Tuesday other than the usual aches & pains, i had sharp vision, mind felt like my old self. Then Wednesday morning.... bam! The world twists (funny turns) and its all downhill, headache, ringing thumping ears, cog fog, seeing spots.......I hate talking about it cause I feel like I'm complaining or people think I'm nuts.

I was recently diagnosed i have gone downhill this hear. My specialist appointment isn't until July. He better b good. Hope he

Can offer some help & ideas and get me on thinners. I'll try anything that won't make things worse.



Is this right you have got Hughes syndrome, had a TIA and not on blood thinners you need to speak with your Gp ? get an earlier appointment or ask why you are not already on them, take information with you.

Good luck

Karen xx


Yes, I was recently diagnosed with APS. Also. History with non epileptic seizures (childhood), migranes, headaches, pulmonary emboli, pregnancy gp wants me to see the specialist, he knew enough to test me but doesnt seem to know much about it. When he suspected aps i started doing my homework and it fit my history so well and explained everything in my messy medical history i knew both tests would be positive and i was right. But when he told me about it he said it doesnt cause heart i know for now his knowledge is limited. I am so thankful he diagnosed me though. So i guess i just have to wait until July 20th. I have been printing info as i come across it. Seems no one has heard of it around here. I am going to try to get in early by offering to take cancellations but the clinic is a few hours away. Thank you.


Focus on getting your treatment right and your memory and cognitive ability will improve.

Personally I am on warfarin AND aspirin (target INR 3.5 -4.5), also azathioprine, I have tinzeparin injections 9000 units when my INR below 3.

Consultant also recomended statins and plaqenil but I refused.

I have had a number of MRI scans of my brain. Most large hospitals have access to an MRI scanner.

Everyone needs to have their own treatment depending on their condition and history but I am just telling you what I am taking in case it helps as an example.


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