Brain fog: How does everyone deal with... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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Brain fog

Croyboy01 profile image

How does everyone deal with the forgetfulness. I get frustrated at times. Not sure about almost everything at times. Leave the house, 30 seconds later going back to the house, because you’re sure that you’ve forgotten something. But you have no idea if you have or not. Etc. Things like that. Is this similar for everyone?

16 Replies

Most definitely.my teeth get brushed well because I can’t remember brushing one side.My most valuable help after my husband is my calendar which I note everything down plus record in my small diary to carry with me.I must look at that calendar numerous times a day like a demented fool.I got up this morning thinking a I was going to the doctors but in fact checking on calendar it’s the book club I am attending.Think we must all be like it.The places I put things it’s like a treasure hunt my for my husband trying to find.It is annoying but funny at times

Zamalek profile image
Zamalek in reply to Fra22-57

I don,t know what your INR range is . Mine is 3-4. I have been coasting along for the last 2 months 2.8 - 3.2. The Clinic , happy with this as it is probably the longest period that INR has been steady. However my cognitive decline, along with no energy and low mood is foul.I would say it feels like dementia, I wouldn't get tested at the moment for that, because I am sure they would say YES> Bearing in mind second 2nd thrombotic event happened around 3.5, Are you energetic and capable of normal life?

Croyboy01 profile image
Croyboy01 in reply to Zamalek

Constantly tired, but can’t sleep anymore than 5 hours. Energy levels are low. But I’ve like this for awhile now, so I’m getting used to it. My INR target is 2.5. Got checked on Monday, it was at 1.6. Back in tomorrow for another check. Only started the warfarin on Friday

Fra22-57 profile image
Fra22-57 in reply to Zamalek

Oh bless you.Yes I am ok.had no clotting events.Just been put on iron tablets for 3 mths as am anaemic so quite lacking alot at moment

KellyInTexas profile image
KellyInTexasAdministrator in reply to Fra22-57

We are all in good company here… God love us.

Yes Kelly, we’re all in the same boat….. HMS Titanic 🤣🤣🤣

Yes it’s a shocker. Been in that situation many times. I often get to an appointment at the wrong time or the wrong day. At times you really think it’s the end of the line. Another day everything runs smoothly. Drives me crazy at times. Yes I know it is not dementia but as you get older you refrain from telling people in case they think it is dementia.Do you have tinnitus too?

I test my day by doing crosswords. I know if I am having a good day or a bad day.

I have always been, as my husband describes " spacey." But I fell from my usual spaciness into brain fog simultaneously with my descent into full blown APS. Warfarin brought me back to myself. But knowing my Mom ended up with Alz has goaded me into researching and following as many brain health guidelines as I can. Daily brain challenges - not just crossword puzzles but reading complex non-fiction books, brisk walks, listening ( and if alone in the car( singing with music. And --this has been on pause since covid -- I once heard on an NPR radio show that the best brain habit comes from hiking in a group because one is: 1, exercising the cerebellum as one is scanning , ( often unconsciously for experienced hikers,) the trail ahead and calculating " right foot here, left foot there, " 2 getting a cardio workout by walking, often (particularly in my state of West Virginia) up mountains, 3 Exercising the cerebrum by talking with other hikers in the group, which often includes identifying this or that plant, or analyzing a friend's problem and offering advice. My hike club now hikes just 2x a month limited to vaccinated club members only,

Forgive me for my passion on this subject. Warning! You may not want to read my reply.

I have to say I disagree with what you say about covid vaccines! We are in a race. The more transmission we have, the better the chance that covid will mutate into a form that has is 100% lethal. Yes, vaccinations do not eliminate the chance of transmission or minor illness. Thats why I still wear a mask in public! (And have been insulted by total strangers for doing so!) This is a planet-wide existential crisis! We all should be scared! And we all should be responsible enough to wear masks, get the shot and social distance! I go to certified auto mechanics to fix my car transmission.I want the truth! If my transmission is shot, I want to know! -even if I would rather hear it can be cheaply fixed. I listen to doctors and public health authorities about how to behave in the midst of a planet wide pandemics! -even if following their advice is inconvenient.

25pooky profile image
25pooky in reply to GinaD

Did you read the Lancet? I am in the medical field. I am glad you found your comfort zone. God Bless. I was not criticizing you.

--and I am not sad that my trail club has limited frequency and participation of hikes. I am proud that my club made these decisions! Just as I am proud my church is using social media more and in person worship less!

But your statement concerning segregation not being the answer is wrong. Isolating the infectious from the noninfectious is, at this point, the best answer we've got! I don't want to ( hopefully never) take a loved one to the ER for chest pain, or a clipping-the-bushes mistake and have them treated by, and thus exposed to, a medical employee who is contagious. I did lose a friend some months ago for the same reason. Her brittle diabetes demanded a trip to a local hospital. She had been staying in, all hunkered down just her and her cat. Her son and I were fetching groceries and leaving them on the porch. She came down with covid 10 days after her hospital visit. And since she had not had the shot ( coupled with her diabetes) she died. So.... did whichever medical employee's right to avoid vaccination and/ or keep that mask on trump my friend's right to get safe care which she and her insurance were paying for? I miss her. And I become irate over this issue. Covid is a planetary existential crisis! Even if a shot and a mask and social distance are all not 100% effective -- its better than nothing.

Wearing a seat belt is not 100% effective at saving a life in a car crash. But statistics show --it helps. So I will click it. And I will disagree with anyone who touts the ineffectiveness of seat belts. ( A grade school friend might still be with us had he been wearing his back in 1970. But he believed it was his right to not wear one. How many lives did his irresponsible decision impact? !)

And does one Lancet article negate dozens of other articles plus NIH and CDC and WHO? Nope. Not for me.

I remember going for a memory sort of test at my doctors.Classic thing of asking you to remember an address then asking some other questions then finally asking you to recall that address.Couldn’t dig it out of my brain but funnily enough neither could my husband🤣

Long time ago I cleaned my teeth with hair remover Oh my nor nice

HollyHeski profile image
HollyHeskiAdministrator

We all laugh it off but we know exactly how your feel!Obvious answer is to make sure we are fully (each of us has our own level) anticoagerated.

My other personal problem is my levels of B12 - if too low plays havoc with my memory. (Have sprayed my hair with furniture polish and found hair lacquer in fridge).

Brian fog is a definite issue! It’s actually one of my first signs that my INR’s are out when I start getting confuddled. If my INR drops below 3, I get my words jumbled up, I can say yes when I mean no and my sentences come out completely the wrong way round but all the words are there! It’s so embarrassing! I’ve been ribbed my whole life for being dottie (hence the username!) but it’s actually my blood being too thick. Luckily those around me recognise the symptoms and even my work colleagues tell me to go get my blood checked! My Haematologist started me on Hydroxychloroquine 6 months ago and it’s helped an amazing amount with the brain fog. I can still tell my bloods are too thick as I still feel off but no one else can, I call that a major achievement!!

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