Memory : Just wondering how others tell... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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daisyd profile image

Just wondering how others tell people in one word or two about their memory apart from what I say

Sorry my memory is cr - - after looking stupid

Hope this makes sense

14 Replies

Hi Daisyd,

I very often forget words so therefor I tell the person I am talking to that I forget words......... . Nowadays I also can blaim my age. Difficult to explain when I forget their birthday. But things like that you can write down. It is far worse when you forget that you were at that special party some years ago and do not remember.

I wonder if you have been able to get the "iLine, micro INR" - machine?

I am positive to Lupus Anticoagulant and tripple positive with high titres so I can not use the Coaguchek XS . That old one may give a difference between the fingerprick and the vein-values up to 2.0. My Hematologist has given me the other one a couple of years ago. It is important to keep the INR correct. Some of us have more erratic INR especially if we are positive to Lupus Anticoagulant.

daisyd profile image
daisyd in reply to Lure2

Thank you, I have a coaguchex machine, for some reason it was giving the wrong readings about 6 months ago but is ok now,

My memory is really bad even if it’s in range

I go to st Thomas’s again next Thursday where I am seen by the haematologist and a really excellent neurologist where I will also have another brain scan, I don’t think they will find one though, I don’t remember peoples faces, names, I really need a brain transplant!

Haha! That's me-often worse on some days. It frustrates my husband when I don't finish sentences. The word is in my brain but doesn't come out. However, my walk buddy can be the same and can't use APS as an excuse!

All the time my memory is bad.writing this I can’t remember all of yesterday.When I forget what I am to say in a sentence I know try to remember what I was about to say but give in n say I will get back to it.It’s embarrassing and I feel like all eyes on me as I’m trying to recall something.I just have to say my memory is terrible.It used to upset me but doesn’t as much now

Lure2 profile image
Lure2 in reply to Fra22-57

Hi Fra,

We all here have too thick blood. That is APS. I am quite convinced that if we have control over the INR (must be rather high for many of us) we manage the daily rutines etc and do not forget so much. My crossword- puzzles goes much better when the INR is in range I have noticed for example.

We are all unique and different personalities here but we have one thing in common and that is our THICK BLOOD. Some of us have more erratic INRs and are more depending on selftesting often enough and to keep the INR in range, but many of us do not even know what INR we have every day and that makes it difficult to feel as good as we could.

Yes I agree Kirsten.I do crosswords too which does help plus I read alot

MaryF profile image

Hiya I have and memory problems on and off for years and now recovering from a TBI, however along the way my Thyroid working better and also decent B12 levels have helped me immensely, but some of my word swapping is awful, I am afraid I have just learnt to laugh with myself, but I do understand it is difficult. Mary F x

Hello daisyd, I don't find my memory loss amusing at all. I have read somewhere that if you have white matter lesions in your brain and the livedo reticularis, which I have had constantly for many years, that you are more likely to develop dementia. I have both the lesions and the L.V. . An interesting thing has happened over the last two days. I haven't eaten any lamb for a long long time. Organic lamb is considered to be anti-inflammatory; for two consecutive days I ate home prepared lamb, my livedo reticularis faded from vivid purple to faint beige. I felt marvellous. I am forming the opinion that the L.V. is a sign of the inflammation in my body, because even when my blood is within the higher titres, I still suffer with physical and mental symptoms. Ok so the Warfarin does as much as it can to the blood, I will continue adding organic lamb plus any other polyphenols I can to my diet, unfortunately I avoid the green stuff which is of course so good for the brain. Best wishes.

daisyd profile image
daisyd in reply to Zamalek

I have white matter lesions on my brain too, and Livedo Reticularis too, I will think about eating organic food, I still eat vegetables eating the same amount each day, to keep my inr in range, basically I am falling to bits

Short answer: I lie. Kind of, sort of, a little. I say my memory is shot since I had a stroke.

"stroke" is short and simple and anyone who doesn't get it isn't going to understand a linger explanation anyway.

Now, I did have a stroke (well, TIA, says the paperwork) but it didn't affect any area to do with memory and I recovered with no deficits - and I have paperwork that shows all that too. I know that I have memory problems now, particularly short-term, I know that it's most likely APS micro-clots, sludging, or thyroid, or just the poly-pharmacy that is my blood these days. But I don't go into those explanations unless I talking to an interested medic or a very interested non-medic, or someone I am going to spend a lot of time with so the time investment is worthwhile. Those I am already close to already know of course.

I tell people I have a dyslexic brain

Yes mine doubled, l have white matter lesions and under active thyroid as well as over medical conditions that caused me to take early retirement 🙄

I have had three full strokes and dozens of tia’s before I was even 50 yrs. old. It was after the strokes that I was finally tested and diagnosed with PAS. I have some mild aphasia as a result and have noticed that the lower my INR is and the more tired I am, my aphasia is much worse. I might be trying to say the word car, but all I can come out with is wheels and chairs. Sometimes a person who can see I am struggling will fill in the correct word. I find it incredibly frustrating. I used to teach family to family courses about dealing with mental illness. I can no longer teach and help others. Other times the problem is simply brain fog. I use that term as an explanation and suggest people look it up. And as long as Covid continues to infect people, you will see that term used more often.

Again I know that the lower my INR is, the more I am affected. Tiredness and stress also increase the brain fog.

Please try not to feel stupid. Angry I can understand because your body is betraying you. But never stupid. Every person I have met in my life deals with an affliction of one sort or another. My best to you.

P.S. I am incredibly lucky that I didn’t suffer more physical damage from my strokes. Until two years ago I was still able to travel, swim and snorkel in some beautiful areas! And I hope to be able to do that again in the future.

I had many mini strokes ( damage showed up on MRIs) before diagnosis 20 years ago. But warfarin has been my best friend. No more strokes, and despite eating green veggies, green tea and chamomile tea daily, ( as well as ginger with sushi,) my INR remains quite stable --even throughout my mild covid infection! I attributed my memory gaps to usual aging, but I recently increased my pro and prebiotic intake to smooth out my digestive tract. And I notice that my memory has improved! There is a connection between the gut, the heart, the immune system and the brain!

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