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Thread: brain fog understanding

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    Default brain fog understanding

    Does anyone have a link to a good article or explanation of brain fog? Hubby just does NOT get it at all. He refuses to give me a break and try to understand brain fog. We've been going rounds about it. He won't accept it and says I'm using it as an excuse to not listen to him.
    "I'm going to get healthy or die trying"

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    http://www.lupusny.org/about-lupus/f...y-and-behavior


    What is the most common kind of lupus brain involvement?
    Many people with lupus—at least one in five—have trouble thinking clearly at some point and experiences memory problems, confusion, fatigue, or difficulty expressing thoughts. Called cognitive dysfunction, the condition likely occurs because blood stops flowing as smoothly to the brain as it should. This also can happen when lupus antibodies cross the "blood-brain barrier," directly damaging brain cells in areas that store memories and other important information. Cognitive dysfunction may come and go, but often steadily worsens over time.

    What is "lupus fog?"
    A part of cognitive dysfunction, some people with lupus get spells of "fogginess" when, for several seconds or minutes, they can not get to information that they know is in their heads. They may read the same sentence over and over again, for example. Or struggle with a normally easy task, like balancing a checkbook or dialing a familiar number.

    What can be done about cognitive dysfunction and "lupus fogs?"
    Reassurance from loved ones helps a lot. So can behavioral counseling, physical or speech therapy, biofeedback, techniques for relaxing the body and mind, and concentration strategies. A lupus diary can be useful to track when fogs happen and what works for dealing with them. Medicines may lessen the fatigue or depression that makes thinking hard. Doctors are learning a lot about how lupus antibodies hurt brain cells and are testing medicines for dementia that might some day help people with lupus.

    Do other brain problems happen in people with lupus?
    Blood flow to the brain feeds brain cells with nutrients (food) and oxygen. Strokes occur when this blood flow is interrupted and brain cells die from the lack of oxygen, causing symptoms such as tingling sensations and problems with vision, speech, and movement (including paralysis). People with lupus have a higher risk for stroke, especially the third or so who have "antiphospholipid antibodies" that make blood "sticky" and more likely to clot and stop or slow blood flow to the brain. Although uncommon, inflammation in the spinal cord or brain's blood vessels also happens with lupus and can lead to paralysis, seizures, difficulty judging reality, and loss of consciousness.

    Can lupus change emotions and behavior?
    Some people with lupus have mild but noticeable changes in behavior such as unusual feelings of fear or lack of fear, or loss of interest or curiosity. More commonly, the fatigue and pain of lupus is draining to the point that a person changes his or her outlook on life. Corticosteroids and other lupus medicines sometimes make matters worse by causing weepiness or other exaggerated feelings. The "emotional rollercoaster" of lupus is something that always should be discussed with a doctor.

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Quote Originally Posted by ruziska View Post
    Does anyone have a link to a good article or explanation of brain fog? Hubby just does NOT get it at all. He refuses to give me a break and try to understand brain fog. We've been going rounds about it. He won't accept it and says I'm using it as an excuse to not listen to him.

    Hi Ruzika,

    Along with Steve's links and info, you could also cite what has happened to me before as an example of what cognitive dysfunction can do to a person. Maybe he would understand an example better, or believe it coming from a guy.

    I'm a 43 year old guy who knows the small town he grew up in like the back of his hand. I've driven into town to go to the grocery store hundreds of times over the years. Despite this, I have gone to the store and then become lost when I tried to drive home after getting my groceries. I don't mean a wrong turn, I mean drawing a total blank lost like I've never been here before. When this happens, I have to call either my family or girlfriend to come to my location so I can then follow them like a guide as they drive back to my house.

    The first time this happened, the brain fog not only kept me from finding my way home, it also prevented me from calling anyone for help because I could not remember anyone's phone number. I now keep those numbers on a card in my wallet where I can easily find it so I can call for help (I have no cellphone with numbers stored because cells don't work well here, if at all). The fog usually comes with a flare, so I've learned to expect it. But sometimes it just strikes from out of the blue with no warning and when I'm not in a flare. It's scary when it happens.

    I need no excuses for not listening to people, I need no excuses for anything really. Having to call your 75 year old father because you are lost in your own town is embarassing, and frankly humiliating even though my father understands brainfog, and would never try to make me feel stupid over it. I can't imagine what it would be like in this situation and not have anyone believe me or understand the reasons why this happens. Tell your husband this story, and then ask him to put himself in my place. What would he do? Wouldn't he want people to understand the reasons why he, a grown man, is lost in his own hometown like this?

    I'm not trying to be mean or anything, so I hope this isn't taken that way. I just hope he can understand what you are dealing with, because I've been where you are. Feel free to use my story if you think it might help.

    Rob
    Last edited by rob; 07-22-2011 at 08:48 AM.

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    More than anything I just want to say, you are in my thoughts, ruziska. I've been fortunate that while it confused my husband at first, he did get it fairly quickly. My coworkers did not. Of course, they had no idea I was sick and they kept telling me I needed to get more sleep, quit staying up late working on the home business, etc.

    My experiences were not much different from Rob's. Worst times for me are actually in the stores. I would go into a grocery store with my husband and daughter and after a few minutes of UV exposure (all those dang fluorescent lights) would stand at the end of an aisle completely befuddled. I could picture in my mind the things I needed to buy. I could not name them or tell you what they were or where they were located in the store. My husband took over grocery shopping not long after that. It scared him too much to see me in that condition. I would get angry and start snapping at them because they'd be saying "What? What's next?" I could look at the list and read it to myself but voicing it was impossible. At work I'd be asked where something was and have to point and say things like "that big brown box that keeps things warm" (cell incubator) or "the room with the swirly thing" (the room where the centrifuge is). I'd walk down the hall with a question for my boss, get to her door and just stand there. Lost. They thought I was an idiot all of a sudden. So much so that when one of the PhDs lost a $500 protein, they blamed me. Later they half apologized and I quit the following Monday. Wasn't worth it anymore to put my body through that Hell. The lab had all uncovered fluorescent lights and the lab I spent most of my time in had UV bulbs that ran half the time to kill infectious agents. So not only was I sick but my job was making me sicker.

    I've only gotten lost once but that was enough to scare the heck out of me.

    I still fog up in the stores if I'm there too long. I cover up a lot to try to reduce it but it only helps so much. We limit our errand running on weekends so I don't get too wiped out. I'm a high GPA student, have an above-average IQ, but when I'm fogged I might as well be 2 years old and learning to speak all over again.

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    I know what you mean KCat,

    I do the whole point and talk thing too. If I'm in a car and I have a foggy mind, and I try to say something like "glovebox", I can't say the word, so I just point and say "that thing right there". Or if I want to say "carwash", I end up saying something like "that place with the spray guns where you clean your vehicle".

    I too was a high GPA student, was in accelerated programs where I got a nice head start on life, but when the fog hits, I may as well be a child. I used to do a lot of flying, and I joke with people by telling them I had to quit because I was worried I'd get up there and forget how to land. Truth is, I could easily forget how to do any number of things like putting the landing gear down before landing, or properly setting the flaps for landing. Omissions that could get you killed. At least in a car, I can pull over, stop, and ask for help.

    Ain't Lupus wonderful...

    Rob

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    Quote Originally Posted by rob View Post
    I know what you mean KCat,

    Ain't Lupus wonderful...

    Rob
    It's a freakin' party, Rob. Where's my pointy hat and that little whistle thing that unrolls when you blow on it? What's that called?

    sigh...

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    I have not gotten lost yet, thank God, because that sounds very scary.
    But I do get these fogs, where I can't think of the proper word, instead of countertop I said, the table with the coffeepot on it, or, instead of prescription, I say, the paper the doctor gives you to get pills, ( I said that on the phone with the doctors office, when I called for a refill). Today I am going to make enchiladas, but forgot to get tortillas, so I called my hubby to please pick some up on his way home, but I couldn't remember the word tortillas, so I said to him ," the white flat bread that they use in Mexico." lol
    My husband is awesome though, he understands me and finishes my sentences.

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

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    Rita,
    If testimonials are any help in convincing him - here's mine.
    Like Rob, I was one of those gifted kids. I graduated second in my class at the age of 16 and went to college on a full scholarship. Graduated with a 3.82 GPA, member of Phi Beta Kappa at the age of 20, with my one year old daughter crossing the stage by my side.
    I recently taught Latin in a huge high school. I know Latin very well. I started forgetting vocabulary words that I had just taught the kids. They thought that I was doing it on purpose when I would pause, so they would shout out the vocab. word. I rolled with it, and the kids got very good at finishing my sentences for me.
    My hubby is also good at finishing sentences for me. As Rob described it very well, a very common word for something can just escape me. I can describe the thing, and Jeff will usually guess it, but it is a very frustrating game of charades for me.
    Hope this helps.
    Hugs,
    Marla

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    I can relate to what Rob has described, I forget how to use the photocopier or like yesterday, the phone - it was as though someone had removed the buttons I wanted, swapped them around and put them back when I wasnt looking.

    Can they treat brainfog? Mine was a lot better when I was on steroids for some reason. But I get dreadful headaches and I have heard they are related.

    What I find seriously upsetting is how those with Lupus often have problems with their partners, and if I am diagnosed, I am terrified this will happen to me, that he will get fed up with me being sick. I realise it is hard for them, honestly I do but I will be straight with you, is the 'for better or for worse' or the 'in sickness and in health' part of the wedding vows a selective thing, as in 'in sickness and in health but not in lupus' because it certainly seems that way.

    I would love my husband no matter what illness he had, and I hope he would do the same for me and when I read about stuff like this it upsets me, lupus may change and affect many things about a person but they are still the same person you fell in love with and yes it is hard for the partners but no matter how hard it is, it does not give them the right to treat their loved ones like this.

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    Hello Rita,

    All i can say mate is i hope he reads steve's link and also what Robs put and if he's still no better mate.

    "Stick a gun to his head" lol...because it's terrible trying to get some people to understand illnesses never mind issues and being your hubby he should know better because you've got that much on your plate it's unbelieveable.

    ((Hugs Terry)) xxx

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