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Sticky Blood-Hughes Syndrome Support
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Memory

Hi guys , does anybody get really bad short term memory loss . Some days I frighten myself how bad it can get x

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All the time!

I can be halfway through a sentence, then go completely blank and have no idea of what I was talking about!

I was trying to type something up today and had to keep re-reading thru what I'd typed because I'd completely forgotten what I had just typed, if that makes sense?😵

Wait, what did I just type?! 😉

It's usually worse when my INR has dropped and if I drop into a flare up then my brain is absolute mush 😱

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Hi, yes have terrible days - its linked to how sticky my blood is as well as low B12.

My mother had vascular dementia so yes again I frighten myself thinking I'm going that way too!!

I now just except bad days and go with the flow. Fortunately good days out weigh bad days. Also find exercise helps, gets the circulation going.

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I forgot what you just Asked -- wait a second ---- yes me to . but some times of day it can be just the other way around - My Doc sent me to a memory specialist and he asked { do you have long or short term memory loss } and i said it depends on what i am trying to remember??? he wasn't impressed at all - but it is true -- i could tell you about a fishing trip we went on 15 years ago and you would agree to every thing we did in detail but couldn't tell you what we had for breakfast 3 hours before . and then later in the day just the opposite !! or can tell you all about our friend from school 47 years ago and you would agree but neither of us could remember her name ??

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Yes, no worries; it seems to be the norm. I'm going to start lions mane.

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What’s lions mane ?

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Please do check in with not only your GP but your main Hughes Syndrome/APS consultant, as any supplement has the potential to mess up your INR or cause allergy. I take a lot of supplements some main stream, others not so, but I am not on Warfarin. Allergies have been reported and we are a sensitive lot:

healthline.com/nutrition/li...

I am not sure that any human trials have been done in any depth, so please do check in with them.

HollyHeski

MaryF

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Have I missed something? Im mentioned but not sure why?

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Oh only the paper on using this mushroom....it looks promising but a doctor would still be needed to verify, drug contraindications and allergy. MaryF

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👍

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People say" oh it's an age thing" well it's not completely true .might be for some but I have just got worse.It makes me feel stupid and insane.If you asked me my grandchildrent name and ages I would have to look on my calendar and I often insult my daughter in law when I get the name wrong.my two sisters are alot older than me and their memories are perfect

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Hi,

I am that age when you say it is because you are getting old ....... my memory is bad but much better when I am in range at an INR around 4 and also after exercise.

Worse memory for us has to do with too thick blood ........ APS!

Kerstin in Stockholm

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HI I do during a flare, or obviously if unwell and not sleeping well, it usually resolves, however I keep an eye on everything, such as my Thyroid function, and I was far worse before I started on LDN and also was still eating gluten. So not perfect now, but better than I was years back, plus I always maintain my levels of things by having regular blood test, alongside my checkups regarding Hughes Syndrome/APS. MaryF

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Hi

Often. It became part of my diagnosis as I don't test positive {but have all the other criteria} by Prof Hughes as it goes with APS. It goes away when my INR is good and high but if it ever drops I can't even recall simple things. I then go and check my levels.

My family find it hilarious. Before I got a diagnosis I was always forgetting things, especially names and was doing things like putting meat in the vegetable rack and carrots in the freezer lol.

Kaz

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Welcome to the club. I'm 65 and family tells me I'm just getting older. I don't believe memory loss is inevitable.

I just learned that I have "Normal pressure Hydrocephalus" This one REALLY robs short term memory. I will be having brain surgery after the holidays and that MAY bring memory back to just plain awful APS related brain fog.

Drink plenty of fluids and get solid sleep every night.

Now where was I.....

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Hi DannyBoy,

May I ask; Is it because of your APS you are having brain surgery? Do you want to tell us?

Kerstin in Stockholm

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Not APS. Rather not say here.

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Of course. I wish you best of luck!

Kerstin

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Me? On and off. Some days I flub everything. Other days, its smooth sailing, INR? Maybe. My own observations attribute flub days to too much sugar and empty carbs consumed the day before. This past weekend I cheated and had a couple of sugar laden desserts. ( I was on a weekend retreat/class at Sandscrest in Wheeling where the food is wonderful!) The next day I flubbed. A lot. The flub crescendo came when I was telling the story of my aunt who was an inspiring artist and teacher but was late for everything! "Yes," I said, " we're all sitting in the church, the organist has finished the prelude, us family members begin to chuckle inappropriatly so that we're down right laughing when they bring the casket in because, she really was was late for her own wedding!" Everyone laughed, but it was a combo of laughing at and with me. Why did I confuse " funeral " with "wedding?" Yes it was a church related event and there are lots of metaphors involving weddings to describe church. But still? Yep. That was my flub crescendo.

Back to limited carbs, I havent flubbed since. When will I learn?

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Yes. My neurologist has me under go neuro psych evaluations once a year. ( he feels they can be more subtle and accurate than an MRI in many ways. He uses them as additional testing metrics to supplement my EEG’s, MRI’s and venograms. )

These tests are administered by a PhD neuro psychologist.

I am shockingly deficient in short term memory, and it is continuing to decline. I am given tips on how to help manage this decline.

( at first -2012- we thought it was break through seizures, but the EEG was showing they were under control. We couldn’t understand why it was so bad... until the APS was diagnosed- late 2016. )

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I keep frustrating my husband by starting sentences and stopping half way through. He has to remind me he's not a mid reader!!

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Anyone interested in lions mane pm me and I'll provide you with link to what I think is the best one out there from Amazon. Do check with your doctor first to make sure it is okay for you. Btw, they probably won't know much of anything about it even though Chinese have been using it for a 1000 years.

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Oh yes! Some days it's terrible! We've now got an extinguisher and fire blanket in the kitchen after I - late last year - started a fire by forgetting about something cooking on a hob. If my INR is >3, then it tends to be slightly better. But it's never great. However I have also had very complex surgery during which the blood supply to my brain was 'off' for a long time - and I think that the after-effects of that have also badly affected my short term memory.

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