POZ Community Forums
Main Forums => Living With HIV => Topic started by: Ant on March 16, 2007, 04:52:29 am
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I know this has been mentioned before but sometimes it drives me crazy, not that I wasn't a little beforehand.
The feeling of walking down the street like you are a couple of steps behind your physical body, whooshing noises in the head, tinnitus, aching neck and bad headaches. Fortunately there are no voices in my head so that is something to be thankful for.
I get this recurring problem, thought it might be the efavirenz but changed a while ago and have the brainfog again or is this recurring sinus problems. Been checked out by the doc and nothing shows.
Praise to the person that came up with 'Brainfog' it is the best descriptive way to describe the feeling....
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Praise to the person that came up with 'Brainfog' it is the best descriptive way to describe the feeling....
Matty the Damned thinks "AIDS Daze" is better.
MtD
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Matty, does that mean "AIDS Daze" = AD, combined with with ADHD = "One fucked up individual?" ;)
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My whole life is surrounded by head noises and dizziness - I was on Efavirenz and the put me onto Abacavir instead and the noises have become worse - I am going to Sydney next week to see a specialist neurologist to see what he thinks - The last time I saw him , he discovered a benign brain tumor - great help that was - the town where I live can't supply the medical attention I need so I have to travel about 1000kms to sydney for help. bloody expensive and unneccesary.
Yes I can understand it being called Brainfog and I hope no one else has the symptoms I have - If they persist - I will take a short cut off this earth
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Hey Ant,
There is also the shorter version of a brain fog episode called the Brain Fart (http://www.netlingo.com/lookup.cfm?term=brain%20fart) (aka a Senior Moment, well known to those of us who are of the baby boomer set). For example, you go into a room and suddenly don’t know why you did that.
Daniel
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I get it sometimes... I feel like I am an observer in my own life, looking through the wrong end of a telescope.
Drives me nuts.
Brainfog's a good word.
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Amyl helps
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Yesterday I thought I lost $220. I went through EVERY pair of pants and all my shirts and my car, my house I MEAN EVERYWHERE looking for it. I remembered putting it in my pocket on monday. And thats the last I remember it.
Today I come in to work, flip a page on the dayplanner I use here and BANG there it is. I STILL dont remember taking it back out of my pocket and placing it on my desk.
Brain fog.
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After I was first diagnosed, I told my ID doctor that I was experiencing "brainfog" (Yes, strangely I used that exact term as well). He didn't really address it because I was newly diagnosed and obviously full of anxiety, anger, sadness and all the other things that come along with finding out you have been infected. I did have some sinus issues at the time as well. Eventually, the brainfog feeling diminished and I begain to feel "normal" in the head again. I don't know if meds can cause this feeling....but for me it seemed to be mental trauma/exhaustion that caused it at the time.
As always, when in doubt, mention it to your doctor... :)
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The other day I phoned my friend on my mobile then started to look through my CD's and totally forgot I dialled her until I heard a small voice saying hello hello hello! :P
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After I was first diagnosed, I told my ID doctor that I was experiencing "brainfog" (Yes, strangely I used that exact term as well). He didn't really address it because I was newly diagnosed and obviously full of anxiety, anger, sadness and all the other things that come along with finding out you have been infected. I did have some sinus issues at the time as well. Eventually, the brainfog feeling diminished and I begain to feel "normal" in the head again. I don't know if meds can cause this feeling....but for me it seemed to be mental trauma/exhaustion that caused it at the time.
As always, when in doubt, mention it to your doctor... :)
It seems to me like a lot of doctors are somewhat dismissive of this concept altogether. They don't seem very receptive to hearing that some of these meds might be having psychological ramifications of the people taking them...I mean, beyond something like Sustiva that is too documented to be dismissed. I think it is a lot like mental issues in general- somewhat "invisible", so easier to disregard.
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The other day I phoned my friend on my mobile then started to look through my CD's and totally forgot I dialled her until I heard a small voice saying hello hello hello! :P
Sometimes I'll call people and forget who I'm calling.
They pick up, "Hello?"
Me: "Hello... yeah... uh... who is this?"
"You're an idiot, Benj."
About 80% of the time, it's when I'm doing one of my infamous drunk dials... so I try to not worry about too much.
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I've had brain fog my entire life, so it pre-dates any HIV
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Sometimes I can't remember taking my meds, having done so 5 minutes prior. Gawd I hate that but it happens all the time. I take double doses all the time I'm sure of it! No wonder I feel like I just drank Drano most of the time!
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Sometimes I can't remember taking my meds, having done so 5 minutes prior. Gawd I hate that but it happens all the time. I take double doses all the time I'm sure of it! No wonder I feel like I just drank Drano most of the time!
I am the same way Jeffery. When I take my meds, I have to immediately right it on the calendar, that I took the AM and the PM dose. I can forget an hour later, if I don't write it down. I thought I had mentioned this in another thread, or perhaps it's brainfog hitting again. We must have a few threads going regarding brainfog ! :-\
Ray
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Well I've experienced this brainfog all my life, before hiv and before meds, so how bad is that gonna be when i'm on meds :o :o :o :o :o
It's usual for me (more than twice a day) to be in a room or in the kitchen and stop there and wonder "why the f* am I here" or "ok i'm in the kitchen what was I supposed to get?" I can't go shopping without a shopping list or it's going to need 10 trips to get everything I need.
Is that what you experience? Or is it different?
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I am the same way Jeffery. When I take my meds, I have to immediately right it on the calendar, that I took the AM and the PM dose. I can forget an hour later, if I don't write it down. I thought I had mentioned this in another thread, or perhaps it's brainfog hitting again. We must have a few threads going regarding brainfog ! :-\
Ray
Look, I do this too but I really don't think it's connected with HIV. Rather it's simply an anal retentive obsessive compulsive trait I have. My mother does the same thing with her calcium ostheoperothic (sp?) pills. It's just something that's VERY EASY to do when you take medication daily.
I don't write it down, but I've definitely gotten better with it over the years, and certainly it's not a daily occurrence.
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How about looking for your eyeglasses when they are in your hand or resting on your head.
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Sometimes I can't remember taking my meds, having done so 5 minutes prior. Gawd I hate that but it happens all the time. I take double doses all the time I'm sure of it! No wonder I feel like I just drank Drano most of the time!
Thats why I have to use one of those damn weekly pill keeper boxes. I load it up on Sunday and then when I forget if I took my meds it I look at my computer to see what day it is....I can't remember that either... and if there are pills for that day I take them.
My short term memory really is all fucked up. I've gotten to the point I check my "sent" box before I email anyone at work. I've made the mistake of composing an e-mail 3 or 4 times before. Lucky I don't vacillate on view points very often, otherwise I might be for something before I was against it....
It really is possible to come up with ways to overcome these little issues. My latest is to never shut the front door behind me unless my keys are in my hand, and to always have back up meds stashed in my car and luggage prior to going anywhere.
Because I can't remember my work address or phone number I have my business card taped to the base of my monitor and I always carry them for reference. PDA has everyones phone numbers as does my cell phone. All my log ins are kept in an encrypted file so that I only have to remember one master password.
It's a bit more work but life does go on with brain fog.
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How about looking for your eyeglasses when they are in your hand or resting on your head.
Yeah, I do that all the time. And it gets worse with age. However, lately I've gotten really good with my keys and they ALWAYS stay in a bowl made of jade in my dining area.
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so,,, does this mean that us with brain fogs are not as "smart" as rest of the normal population? Can we really be standing in equal capacity or intellectual and critical level as those people who don't experience brain fogs or memory loss?
mine is getting worse and worse...
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Look, I do this too but I really don't think it's connected with HIV. Rather it's simply an anal retentive obsessive compulsive trait I have. My mother does the same thing with her calcium ostheoperothic (sp?) pills. It's just something that's VERY EASY to do when you take medication daily.
I don't write it down, but I've definitely gotten better with it over the years, and certainly it's not a daily occurrence.
That could very possibly be true, but that doesn't explain the momentary loss of .... you know um, um,... uh ........uhhh, ok no... uh, ohhh,.. ummmm, oh yeah thought, when you in um, uh,..... conversation.
Ray
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so,,, does this mean that us with brain fogs are not as "smart" as rest of the normal population? Can we really be standing in equal capacity or intellectual and critical level as those people who don't experience brain fogs or memory loss?
mine is getting worse and worse...
I don't believe so. My issues are strictly short term memory. Rarely is cognitive thinking effected. As proof I'm carrying a 4.0 GPA in network security while working full time plus. Memorizing on the other hand..... yiikes lets just hope I don't have a class that requires memorization.
Bottom line is we're sick, we just have to adapt.
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I love you Grinch!!! no use in any of the worry.. Just GET ON WITH IT!!!
lis
(who has her share of AIDS haze)
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I prefer to call it "A Blonde Moment ..."
Sometimes we all experience these lapses of memory, whether it's pre- or post- HIV or meds. Its' just part of the way the brain funcitions. We forget people's names, who we dialed, our wallets, keys, etc. It's nothing to get worried about unless it is begins to happen more and more frequently.
I was going to make another point but forgot what I was going to say ... <sigh>
Tom
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Here's an interesting article on Yahoo today touching on this subject
http://news.yahoo.com/s/ap/20070320/ap_on_sc/the_wandering_mind (http://news.yahoo.com/s/ap/20070320/ap_on_sc/the_wandering_mind)
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its interesting because last night, i tried to read something complicated where you have to remember the last few sentences you read in order to fully understand the current sentence. Man,,, my mind started wondering like crazy and didn't know what the heck I was reading.... I just couldn't remember the last paragraph or the last few sentences that might explain the complexity of the current sentence that i was reading....
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Grinch says, "Because I can't remember my work address or phone number I have my business card taped to the base of my monitor and I always carry them for reference. "
I can certainly relate to that only with me it's my HOME address and phone number. I also have them written down on my telephone.
Like the rest of you, I always put my keys in the same place every day.
Ello, reading has become very difficult. So frustrating. I'm not sure if it works or not but it sure gives me a sense of accomplishment and that is working crossword puzzles and double crosstiks.
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A few weeks ago a rental agent on my apartment search asked me over the phone for my phone number. Complete blank. LOL
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:-[
http://www.msnbc.msn.com/id/20283611/ (http://www.msnbc.msn.com/id/20283611/)
The AIDS virus damages the brain in two ways, by not only killing brain cells but by preventing the birth of new cells, U.S. researchers reported
The study, published in the journal Cell Stem Cell, helps shed light on a condition known as HIV-associated dementia, which can cause confusion, sleep disturbances and memory loss in people infected with the virus.
It is less common in people taking drug cocktails to suppress the virus, and why HIV damages brain function is not clearly understood.
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The article (and thanks for posting it!) referrs to the AIDS virus. I assume that they mean the HIV virus and got caught up on the semantics. I still think that this has at least contributed to MOST of mini's neuro-issues. She has bad "brain fog" for years. She has another MRI on January 2nd to check for inflammatory demylenization neuropathy. But, this article sure lends credence (sp?) to the fact that mum is not a town crier.
mum
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Amyl helps
lol
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Had missed this thread when it was originally posted...
At least I see others sometimes can't remember their phone numbers. My memory is getting worse. I am thinking of switching from sustiva to viramune hoping that might help a bit. I've noticed that it's not necessarily simply remembering things... but it's trying to recall things quickly or when I'm put on the spot. It's as if the retrieval mechanism is being interfered with. This happens especially when I'm asked a simple question that usually gets an immediate response. Sometimes my retrieval mechanism just "jams". It feels like I'm standing up to try to give a speech in front of an audience when you're completely unprepared. I call it a "mental white-out"... like trying to find your way in a blinding snowstorm.
I believe there is a physiological basis, but I also believe that many of us don't sleep properly. Sometimes my sleep is tortured with dreams and simply weird mental disturbances. I'm often so exhausted at the end of a work week that all I can think about is laying in bed most of the day on Saturday to catch up on as much sleep as possible. I notice my brain function is definitely improved after about three or four days of maximum sleep. Also, I notice I omit words in my emails. It's as if my brain is thinking ahead of my typing and when my typing gets behind, my hands just skip words to catch up to my thoughts. I always have to reread my emails to be sure they're comprehensible... in fact I just did it in this email.
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Also, I notice I omit words in my emails. It's as if my brain is thinking ahead of my typing and when my typing gets behind, my hands just skip words to catch up to my thoughts. I always have to reread my emails to be sure they're comprehensible... in fact I just did it in this email.
I hear you loud and clear on that. This is happenning to me more often than I care for. Also noticed my handwriting is getting much sloppier, and skipping letters or complete words. So, it's not only in my emails. I was just mentioning this to Alex the other day in an Email. ( or at least I tried to )
Ray
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Related to this... I saw a segment on PBS last night where the researcher had a rat's brain wired up ... literally wires inserted into the brain that sent signals that were geometrically mapped on a computer screen. He could see that while the rat dreams, the same patterns recorded during the rat's day's waking hours were repeated. It's as if the brain is processing the information from the day.
I also used to always dream like this... where my dreams might be strange but they usually had a recognizable element of something I experienced during the day. In fact, the day would literally seem to play back serially from morning to night. When I dreamed about something that happened just before I went to sleep, I felt that I was "sleep satiated."
Now, after being HIV infected and on meds, my dreams are all over the place. Frequently, there seems to be no relationship to what I've experienced during the day. I never feel totally rested.
The segment also demonstrated that simple tests like typing a repeating pattern on a keyboard, could be performed much faster and with better accuracy in the morning (after sleep) vs late in the day. This all seems to me to lend some credence to the theory that something is screwing up the normal processing of day to day information in my brain and subsequently, I'm always performing below par.
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My dreams are always bizarre. They're surreal and I usually wake up from them in a bad sweat. I'm not sure that I do perform hand-eye coordinated things better in the morning or not. I always take a nap in the afternoon. My sleep has been awful at night, however. Last night I didn't get to bed until around midnight, which is highly unusual for me. I'm usually out no later than 11:00. Then I kept waking up and finally got up about 6:00 this morning. So I'm feeling quite drained right now, and all I did was exercise, take a shower and go to the library to get some movies.
But back to the brainfog... this can be quite troublesome for me being in school when it comes to writing papers or trying to remembers things for exams. Other students tell me about just sitting down at the computer when they write their papers and typing whatever comes to mind. I can't do that. I have to put it on notebook paper first, hand-written and always with a million corrections on it. Oh well, I don't mind that.
I do crosswords and play Jeopardy (which can be done online also) to try to keep my brain sharp. Also always trying to learn new things. For me, it's very important to keep my brain active.
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I do crosswords and play Jeopardy (which can be done online also) to try to keep my brain sharp. Also always trying to learn new things. For me, it's very important to keep my brain active.
I just started doing three of the daily puzzles in the newspaper (Jumble, Wuzzles and Soduko) and it amazes me how much better my concentration in particular has gotten with just doing these damned things everything before bed.
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Was taking a shower ..Did I shampoo yet? ugh....I can't recall...
I hate brain Fog
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Did I mention I hate brain fog???
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Iggy, I know sodoku is really becoming extremely popular. I don't do very well with numbers and have yet to figure out how I just got an A in my college algebra class. :D My brother's girlfriend was trying to explain how to do sodoku and printed me out a puzzle. I have yet to try it.
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Iggy, I know sodoku is really becoming extremely popular. I don't do very well with numbers and have yet to figure out how I just got an A in my college algebra class. :D My brother's girlfriend was trying to explain how to do sodoku and printed me out a puzzle. I have yet to try it.
Oh Betty, once you do you'll probably get hooked. Tim (Moffie) got me hooked on them when we were in Las Vegas with Jan, RAB, Cliff and the gang.
I do at least one a day, usually two or three. I do them while watching television - or rather, listening to television.
It doesn't involve math, just logic. I find it quite stimulating and I think it has improved my concentration somewhat.
HUGS,
Mark
Edited to add: When the spell check hits Sodoku, it comes up with Sodomy as a replacement. Hmmm.
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I have also been doing Soduko puzzles....I think brain 'exercise' and stimulation are critical. Also, it needs to be "new and different" things....for instance, the menial tasks of my job are not stimulating my brain, they are just taxing it!
Alan
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Sodomy eh, Mark? OK, I'll try it. It just seems to me that things that involve numbers are harder for me to try to figure out. But I will try it. I'll probably get hooked as well.
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I don’t know about you all, but were no spring chickens any more (quote:Aunt Bee).
I've ALWAYS been spacey i.e. forgetting why I went into a room, not finding the right word I want to use, even driving and suddenly not knowing where I am till I see a landmark.
I can't blame that on hiv, I'd like to, but I had that way before hiv.
Being 54, I think a little thing called aging is coming into play more than anything else.
I know when I turned 40, the body took a turn for the worse. And I did nothing different but turn 40.
Someday they may have meds for aging....well maybe.