My Dirty Little Secret

[RAB]

The title is somewhat misleading, I apologize for that. 

It was intended to capture as much attention as possible.

It is also, frankly, pretty accurate.

It's not intended as judgement.  So don't even try and turn this discussion into another venue of what's wrong with the overall situation in this country.  I'll rip anyone's face off that views this as another trough of victimhood on which they can build their pedestal.  I am serious about this.  It's too important to me. 

My dirty little secret is that my "brain" just doesn't work like it used to.

Clinically, we have ruled out:

A.  Hep C.
B.  Depression
C.  My Testosterone levels are normal
D.  An MRI shows nothing "structurally" going on.

I'm not struggling with dementia as I understand the definition.  I know my name.  I know what day it is.  I know where I live.

But if you ask me to look at any issue beyond it's surface level, I become confused and withdraw.  If you ask me to seriously analyze an issue down to it's second or third level, I can't maintain the focus.  If you disrupt my daily routine (3:00 p.m. lay out tomorrow's pills, set coffee up for the following morning) a routine which I recognize I have constructed more as a defense to function daily than a matter of convenience, my world becomes unmanageable. 

I'm not a stupid person. 

I think I am reasonably sane.

But with each passing day, while the changes are minuscule and beyond notice, cumulatively the change is undeniable. 

We've talked about this before in these forums.  Usually we refer to it as "brainfog".

I saw this brief snip on MSNBC. http://www.msnbc.msn.com/id/15107854/  I usually don't pay much attention to these sorts of news stories because if they have any real merit, we've learned about them months before in these forums.  The media also has a tendency to abbreviate things in such a manner that the real meat is not communicated accurately.

The story reminded me of the thing I struggle with the most in "Living With HIV".

Am I the only one?

RAB

[Matty the Damned]

You're not the only one doll. Matty the Damned experiences brainfog and has AIDS Daze all too often at the moment. He's trying to figure out why too, but that's an effort.



MtD

[newt]

This is deffo a real thing eh? and I think will become more and more a topic of long-term survival, not the dramatic brain stuff that goes with encephalitis and HIV-related dementia complex etc, but the long-term grinding down of facaulties.  It may be (a) the virus affecting the brain or (b) the immune system causing damage upstairs or (3) HIV drugs. Or all three.

It's an area that needs more focus.  We's pushing it in the UK with the British HIV Association.  There's not even really a diagnostic framework.  I do find though, that half an aspirin a day keeps the fog at bay (a bit) prob cos it damps down the inflammatory effect of white cells in the brain (which are toxic toxic in large quantities) but know this is just a sandbag, untested (it should be tested) and not the whole story.  There's a whole thing to look at on blood supply which is more about heart & circulatory health, for example.

- matt

[Robert]

Rocky.

This is a very real problem with me.  I noticed it as I was recovering from PCP and thought it would improve as I got better.  But I just don't see it.  Like you said, anything below the surface and I just get confused.  My phones were down for 8 days.  The repairman came today and explained to me how the lines got crossed (something about magnetic fields).  I was completely at a loss.  Like you said, it's incremental.  Everyday something seems to chip away at the gray matter. 

I love to read.  I love mysterys.   Especially if they take place in Los Angeles.  There is something very noir about an LA mystery. Anyway, I'm reading a book by Joseph  Hansen and whenever I pick it up from where I last left off, I am at a complete loss.  I have to go back and reconstruct what I've previously read and go over each character to make sure I've got everyone on the right page, so to speak.  It's as though I'm starting all over again. 

Dementia is a trait that runs in my family.  The added burden of the virus vs.the meds vs. long-term survival scares me.

robert

[Jeffreyj]

I have something that may be similar, as I have trouble with focus more now then I ever had before. I don't know , but I always attribute it to normal aging. Maybe I'm wrong, I can't be sure. But when I read your post It definitely "struck a nerve"...I'm 49, and have been on hiv meds for 22 years.

But you bring up an important point. And it has always amazed me, why no one in the medical community has  asked me  to be part of a study. I am willing, but there seems to be no "market" for it. I have always told my DR to let me know of anything...but nothing has ever come up. I'm ready, able and willing to whatever I can so that we can learn, and make the world a better place for those future long-terms.


Thanks for bringing this up. I hope it starts something that can help everyone.

[Moffie65]

RAB, and Guys,

As you might recall from our last conversation about BF, (Brain Fog) I was having a severe bout of the fogs.  It seems really strange, but when I dumped the Olestra based Kaletra and went to the pill form, much of the severity of the fog left, and my mind seems to work dramaticly better than it did before.  I will however point out that this is only an observation and there is no way I can prove tht this had anything to do with it.

One of the things that I have done to help keep the fog at bay is to use my mind in games on the computer.  I think the repitition of game action with word games keeps my mind working better than if not.  I know I used the computer to recouperate from PCP fog, and I still use it for some exercise.  What ever games you choose, make sure they make you think.  Word games are my favorite and keep me thinking smoothly.  I know that it is a pain in the ass, but analytical thought really helps to keep the cob webs out of the brain and I cannot advocate enough for mental exercise.  Solve those problems, and keep going.  Even though sometimes it is not easy, you must keep going, otherwise.......... Who knows.

I agree with RAB here, and I think it is vitally important for us to keep the search on for someone to pay attention to this, or else there are going to be a load of long term survivors in a few years, walking into walls, and nobody will have the slightest clue as to what took place. 

When we had our last discussion, I went to my doctor and set up an appointment, however, the wait took so long for the apt., I cannot for the life of me remember why it never took place.  Odd isn't it.

In constant confusion.

[jack]

I have the same problem.  I make lists all day long of things I need to do, but sometimes I forget to look at the lists. I have messages to myself all over the walls of my office. Maybe we are just getting old?

[J.R.E.]

Hello Rocky.

Sounds a little like me...  Most of the time, I believe I am somewhat focused, and don't have a problem. Then there are times, when I will be talking to Ed, And I will completely go blank mid-sentence !! I will sometimes have to ask him, what the heck we were just talking about. It doesn't happen that often, but it still happens.

I am still working full time. I don't have any problem at work, still can handle any emergency situation, very professionally, and without problems.

I sometimes find myself having to write myself notes. I will tell Ed, I am going to go shopping, and when I get there, I sometimes forget, what the hell, I went there for in the first place. Haven't lost the car yet, in the parking lot !! There are many times, when I will not respond on this site to posts, because I just can't get it right on the page.

It would be easy to say "I am having an "Anheiser-Busch moment", except I don't drink. My biggest problem was the meds.I sometimes forgot an hour later, whether I had taken them or not. Got that problem solved for now !....

I will have to talk to the doctor about it next week, on my next appointment, But you are certainly not alone...


Ray ( What the hell did I just type)


EDITED....By the way, thanks for the link. I knew I forgot something !

[Alain]

.

[MSPspud]

While I haven't had the disease quite as long, I could tell a difference just prior to going on meds.  I definitely had some fog issues, but since becoming undetectable, I feel like my old self upstairs.  I find this subject particularly scary as it runs in my family too.  What I do today, is take fish oils, which help with inflammation and provide the building blocks for the brain.  In particular, a fish oil high in DHA is best for this.  At the very least it can be preventative.  With all the benefits fish oils have both cardiovascular and mental, HIV folks should be taking them.  You're not alone, RAB.

[Matty the Damned]

With all the benefits fish oils have both cardiovascular and mental, HIV folks should be taking them.

Matty the Damned doesn't care for fish oil. Suggest something different.

MtD

[Christine]

No...you are not alone. I am exactly the same way. I have a very routine day, and if that changes I have trouble coping. Which pisses me off, and scares me at the same time. I used to work in the hotel industry, and each hour was different, and I was able to multi-task the multi-tasks. Now, if anything changes in the day, it is horrible. My anxiety goes up, and I feel confused.

I have also noticed mental changes. I don't feel as smart as I used to. I forget things, I can't think of words mid-sentence, I've gotten my doctor's appointments confused.

I sometimes think it is the meds, sometimes the virus, sometimes just lack of use compounds the fog.

Christine

[AIDS2HIV]

I've got it to....when the virus progresses and breaks the barrier to your nerve system and your brain, you lose some things....ill just speak from my experience with this...

like me, my brain catches things in memory, but i cant recall it when i need it to. I too, get overwhelmed with things, example....lots of reading, im good for cple sentences then im lost, confused, and easily agitated. I have spoken with doctors in depth had all kinds of tests ran, etc its from the virus breaking through that barrier. i forget things that i shouldnt, and lose memory in the blink of an eye.

i almost burnt the house down a week ago, making microwave popcorn for my little one, i put the bag into the nuker, turned it on, and just that quick i forgot about it it burst into flames, filled the house with smoke before i could comprehend the cause of it.

ive stepped into the bathroom only to get lost, forgetting that i was there to take a piss. Ive cooked dinner for the family on like a monday, putting the food into the oven, my wife would remove it, and we will eat. But days later i will suddenly get up and run frantically to the kitchen because my brain recalled i put the food in the oven, resulting in my wife to calm me down, with the play by play for my remembering purposes.

You place forms that have to be filled out in front of me, they create anger and rage, simply due to the overwhelmed feeling i get trying to recall what the ask for. by trade i used to program and operate robotic welders for the auto industry, i was a computer geek, i've since lost that. Doc says it may improve, but will never fully regain its previous normal state. No matter how routine things can be made, i still find myself lost, confused, and forgetting things.

its just something ive learned to accept.......good luck & God bless*

[Robert]

Haven't lost the car yet, in the parking lot

That happened to me when I came back from Montreal.  Parked in the long-term parking lot and I ended up walking up and down the rows flicking my car keys and listening for the "beep" when the doors unlock.  Scared the bejesus out of me.

robert

[Lisa]

Hope you all have read the Neuro AIDS thread, as it is entirely applicable here.

[pozguy75]

One thing I have noticed is that it takes me longer to focus and concentrate on things...my attention span seems to be dwindling...I also am experiencing some short term forgetfulness, but the next day I can remember things I could not remember with the first 5 minutes...

So, Rocky, it's certainly not you...

Jeromy
(who doesn't want his face ripped off...love you man!!)

[CaptCarl]

Rocky,
   It definitely is not you per se. I too have trouble like this a lot, and until recently, just thought that it was me. It wasn't until joining these forums, that I heard for the "brainfog" It was stunned, because that's exactly what it is, a fog that prevents one from being fully cognizant on occasion. It's difficult even to pay attention to what some one is saying, because after awhile they begin to sound like Charlie Browns teacher. Just try to make the best of it, that's all any of us can do.

[angels4kelly]

I have the same thing and until you posted this topic, RAB, I thought it was just me.
Thank you for this post! I wanted to say something about this myself, but I had great difficulty trying to put in to words the way I was feeling.

Thanks again, RAB.
Peace,
Kelly

[ademas]

Me, too, Rocky.
I'm having one of those days today.
It's frustrating.
I was listening to a radio talk show hosted by a doctor a couple of weeks ago, and he was talking about the daily use of ibuprofen to stave off different types of dementia.  He mentioned that it was being studied, mainly because many arthritis patients use ibuprofen daily, and it's apparently been documented that fewer of these patients suffer from dementia.  He went on to say that they are not yet sure if this has to do with the actual use of ibuprofen, or if it has something to do with the altered physiology of simply having rheumatoid arthritis.
Have any of you heard of the use of ibuprofen to prevent dementia?  I googled it and found a couple of things, but nothing sounded very conclusive.

[RAB]

Hey All:

Maybe the phrase misery loves company isn't the best, but it's reassuring to read I'm not alone in this struggle.

I'm glad the research is going on at JH I guess, maybe it will provide some additional insight into what it is we all seem to be experiencing.  Though my MRI showed nothing the research is still a step in the right direction I think.

Somedays it just takes so much energy to wade through the fog and still function on a reasonable basis, it leaves me feeling cranky and bitchy (imagine that? ME?  Never!  ).

Whether it's the virus, the meds, the toll of aging, emotional distress, or a combination of some/all of those, we're just going to have to keep moving forward and adapt as best we can.  (So help me if I start drooling and "walking into walls" I'm expecting you all to be right there with me dang it!  I ain't suffering this alone!   )

Thanks again (for the lack of a better sign off) for your confirming support.

RAB

(Who's wondering if he put deodorant on this morning or not?     Suddenly he can't remember!) (Sniff Sniff)  (Yep I did!   )

[Maestro]

That article describes my Uncle to a tee.  However, in the 7 years he has been +, I noticed this happening to him, and then he sort of hit a Brain Fog plateau.  It didn't get any better, or worse...just sort of there.

M

[Strayboy74]

Am I the only one?

I have been wondering this same thing about myself for some time now.  I'm glad I stumbled onto this thread.  I was attributing it to old age as well.  I have been fighting the virus for two years (this is almost my anniversary) and I find that my short term memory is beginning to suck more than ever, but a day or two later, I have a perfect clarity of the situation.  I thougth it was the stress of a new job, but alas, I don't think so.

I have always operated from lists, so it wasn't noticeable at first, I thought it was just because I was tired (recently became anemic) but other times, I'll be inside of my head, just observing what goes on outside of me, unable to connect with what's going on around me.  It's almost like I'm watching my life on a television.  kinda strange.

This is truly interesting.

[jntmax39]

WOW
I can't believe I'm reading this.I thought I was just losing my mind. Damn,now what. I am On Sustiva and Truvada.Only for a little over a year. I have probably had the virus for a very long time before getting tested.I have noticed a signifagant change in my mental health and physically since 1995.
 Thank you for this. Does anybody have any advise as to how to deal with this?

[Grinch]

I experience this as well.   I always put it off as "Chemo Brain" but the bottom line is I've lost alot of concentration.
Switching to kaletra from Sustiva helped quite a bit, but I still have to do things like keep a piece of paper with my own phone number on it.

  Reasoning doesn't seem too badly effected but swiss cheese brain is kicking my ass.

[poobear]

All I have to say is WOW.  I thought it was jjust me.  I would always call these "Brain Fogs"  "Brain Farts"  same thing.  I realy did not think of it to relate to HIV or Meds just that I was getting "brain Farts" due to drugs I used to do back in the day. I dunno.  But this is very interesting.  Thank You   Rachel

[Just John]

Yep me too, I can agree with all of you about most of the problems at various times. The intensity varies with me, usually I've noticed, worse when I'm tired or stressed. It was frightening at first and I dreamed and worried about any and every possibility, then I read in someones blog on here, sorry but I can't remember whose  , about "brain fog" and knew straight away that that was me. I've always been a bit of a dizzy queen when it came to remembering things and have used lists and notes for as long as I can remember, (how long? lol), but to find myself looking at the list and then instantly forgetting what I've read was quite frightening and all the medics could say was that it was "probably stress related". There is also the concentration problem, there are times when I find it difficult even to read a book, having to read and re-read sentences to make sense of them. I thank god that I'm not like that every day and hope that someone somewhere comes up with an answer before it gets any worse. It's also comforting to know that, like the rest of you, I'm not alone.

By the way, my life has depended upon the humble "post it" note for many years now, I've also got a natty little programme for my PC which does exactly the same thing on screen. It's free and can be downloaded from www.zhornsoftware.co.uk

John

[Moffie65]

Wow RAB,

I know we did this once before, and the thread was astounding then.  Now however, there seems to be the same intensity, yet few of us are repeats from that conversation.  I would love to compare the two, but don't know how to get a thread reference from the archives.  I think it was simply called "Brain Fog".

Just John. I must thank you for the computerized post-its.  Downloaded and wow, thanks loads.  I would imagine that this offering could make quite a bit on donations from this site alone.  Again, thank you so very much.  Now, what do I do when the screen can no longer be seen......   

All you guys that are new and entering into this thread; welcome, I trust you will find it comfortable here and stick around for a while.

In Love and Support, (when I can remember what I am doing)

[J.R.E.]

Wow RAB,

I know we did this once before, and the thread was astounding then.  Now however, there seems to be the same intensity, yet few of us are repeats from that conversation.  I would love to compare the two, but don't know how to get a thread reference from the archives.  I think it was simply called "Brain Fog".

Hello Tim,

I believe this is the thread you are referring to . ( from the old forums) It was started by Ann...

http://www.aidsmeds.com/Fusetalk/messageview.cfm?catid=5&threadid=23654&FTVAR_MSGDBTABLE=arc


There was also this thread :

http://www.aidsmeds.com/Fusetalk/messageview.cfm?catid=5&threadid=23795&FTVAR_MSGDBTABLE=arc


Ray

[Just John]

 ;DTeeheehee, Moffie when your screen goes yellow it's either time to get the antistatic cleaner out or;  just right click on the top bar of the sticky note, select 'sleep' then 'custom' and it will disappear until the time and date that you wish it to you reappear. You can also change the colour of them so that they can be categorised.

John.

[Just John]

Oooops; Foggy queen strikes again! Sorry folks but if it's not already obvious, after selecting 'custom' as above, you also need to choose a time and date.

John.

[blondbeauty]

If this makes you feel better...my brain has always been in a fog. But it must be something inherited from my parents. My mother always called my brother and I with the wrong name (and we are only two) or even by the dog´s name...I forget words, but my father was asking me the other day for "one of those white things to write on": a sheet of paper...
Don´t worry too much. A sharp mind is boring and being a bit confused an forgetful can make you look extravagant and relaxed which is very chic.

[Jody]

Rocky...You always seem quite sharp whenever we speak or have met...Your attention to detail and completing tasks is outstanding and your concern for doing things the right way and the best way is most admirable.

Doing stuff such as reading, learning new things, crossword puzzles, etc. can all be quite helpful in keeping the brain working well, similar to how exercise helps our biceps or running assists our cardiovascular system.

Keep on truckin' Rockala, you're pretty perfect to me !!!

Jody 

[LatinAlexander]

oopppsss.... So that's the reason why.... I forget the name of the things, but remember clearly its definition..And also, I am in the middle of a conversation, and have this horrible feeling of I-cannot-for-god's-sake-remember-the-freaking-word-I-Wanna-say...

Scary...Jesus, Scary... I am a number freak, because of my work, and missing my memory..DO not wanna think about it.

Alex

[aztecan]

Saturday September 24, 2005 9:18 AM   
       
 
I am so glad someone started this thread.
I thought it was just me, or that I was just aging, and not too gracefully. I have noticed it in my writing. Mistakes I should be catching are showing up.
Worse, I have that nasty habit of forgetting what I was doing, why I walked into a particular room, where I am going when I head into town, etc. It is like my mind just wanders off in a direction of its own, taking me with it no matter what it is I am doing at the time.
I don't get "cricket bat" headaches, per se, but I seem to get headaches regularly. Usually a dull droning type of headache, but sometimes accompanied by sharp, stabbing pains behind my eyes. It feels like someone is shoving an ice pick into my eyes. It doesn't last too long, but can stop me in my tracks when it hits. Ibuprofin has become my friend.
The list of "stupid" things I do are endless. Like starting five new projects because my attention becomes side tracked, forgetting what I'm talking about in the middle of a sentence, or having to reread something repeatedly because I can't seem to focus on what I have read. And for those do-it-yourselfers out there, I have measured, re-measured, and re-measured things as part of home renovation projects.
My mother does things like this. She is 82. I'm not.
I remember my mother's social security number, my driver's license number, my checking account number. But I can't seem to keep dates in my head, and names are evaporate like water on a griddle. I write a lot of things down so I can remember them later.
At least I know I'm not alone and I'm not going crazy.

Peace,
Mark


-------------------------
It’s the good girls who keep diaries; the bad girls never have the time — Tallulah Bankhead.

This is what I wrote in the earlier thread. Things haven't changed much, except my typing is getting worse, at least sometimes.

I now remember having conversations with people, but not how those conversations ended.

I guess I better start playing some of Tim's games - and fast.

HUGS,

Mark

[emeraldize]

*

[emeraldize]

Well, I guess I needed a list to remember to post the link I noted. Yeesh. http://www.psychology.pitt.edu/research/publications/becker_2004.pdf

[keyite]

Well, this has definitely got me firmly back in panic-mode. I had just about accepted that I might not die of AIDS at all or at least not for a long time to come but what use is being physically okay if my brain is going to fail? Sharp and analytical thinking is a key requirement in my profession (computing) and it obviously would then spell the end of my career. Don't think I would cope well with that.

Are there anyone who has lived long-term with HIV who has NOT noticed any 'brain fog'? Anything you can do to slow it down apart from HAART?

[Maestro]

What I find interesting about this research is that there seems to be a large segment of HIV + people that all went on the meds during the same time frame (say 2-3 year range when the drugs were introduced).  This seems to have created a large segment of patients who are going through the same phases during roughly the same time...

Im not saying the long term effects of any treatment are detremental, just that something seems to be happening to a lot of people at the same time (hence the large number of replies to this topic...

Anyways, thats the biologist in me speaking...

M

[Moffie65]

Are there anyone who has lived long-term with HIV who has NOT noticed any 'brain fog'? Anything you can do to slow it down apart from HAART?

Keyite,

The problem seems to be universal, and no I haven't witnessed anyone here who hasn't...  On top of that, HAART doesn't do anything for the HIV in the brain, as it doesn't seem to reach that organ.  So, HAART is not the answer, and more and more data seems to point to it being part of the problem in itself.

Maestro,

Interesting observation, but many in research are pointing to our respective ages, and simply ignoring our issues as aging related.  Only recently through some of the studies, they are finding that time on meds isn't particularly significant, nor is the age of the HIV+ person.  It seems very much an HIV problem and shouldn't be confused with time on meds.  At least the respondents to this thread have ages and times since diagnosis that are all over the place.

Curious still....

[Ann]

Bah, brainfog. It pisses me off like nothing else.

I went back and read the thread I started in the old forum (Ray linked to it - http://www.aidsmeds.com/Fusetalk/messageview.cfm?catid=5&threadid=23654&FTVAR_MSGDBTABLE=arc ) and nothing has changed for me really. Still get foggy days and clear days, still get the bad headaches. I still haven't returned to work and don't really have the confidence to try. If I could get a paid job I could do at home, in my own time (and jammies LOL) I'd go for it, but I don't even know where to start on that score. Ever notice some days when I'm really quiet? I'm likely to be lost in the fog on a day like that. How on earth would/could I explain this to a new or prospective employer? What would they think of me on days when I struggle to communicate because simple words have vanished from my vocabulary? It might not be noticeable here on the forums just how much I struggle some days, because you don't know how long I've been sitting here trying to find a word.

I do word and/or number puzzles just about every day and it does seem to help a bit. I also read every day and not just on the internet, I read at least a chapter of a book every night when I go to bed.

The memory thing is very peculiar. I know I know what I want to access, but it's like I just can't access it. Sometimes when I've "lost" a word, it will suddenly pop into my mind hours or even days later. Sometimes a word will pop into my head and I can't remember what I wanted it for or when. It's almost like a signal goes out in my brain to find a piece of information, the route to the information is blocked, and my brain-cells find an alternate route to the info and it can take some time to find that new route. Weird, eh? It's SO frustrating to know that the information is in there somewhere, but I just can't get to it when I want it.

Of all the things I've lost, I miss my whatsis the most.

Ann

[Grinch]

Well, this has definitely got me firmly back in panic-mode. I had just about accepted that I might not die of AIDS at all or at least not for a long time to come but what use is being physically okay if my brain is going to fail? Sharp and analytical thinking is a key requirement in my profession (computing) and it obviously would then spell the end of my career. Don't think I would cope well with that.

Are there anyone who has lived long-term with HIV who has NOT noticed any 'brain fog'? Anything you can do to slow it down apart from HAART?

My job is all about analytical thinking,  That hasn't really suffered.  Just short term memory. You can compensate for it though.  For instance.  If you're setting up a small network, draw the thing out first IP's, hostnames etc. That way when you haven't a clue what IP scheme you were using you just look at your diagram. I literally walk around with all my phone numbers etc in a palm pilot.  I've actually forgoten my home address before, yet I can still walk a customer through trouble shooting her CT machine while driving down the road drinking a cup of coffee.  Of course if I tell her to call me back if she has anymore problems I have to look up my own cell phone number. *shrug*  weird, a PITA but you can work around it.

[Maestro]

There is a game for the Nintendo DS (handheld game system) called brainage.  It is a great way to keep your mind sharp and have a little fun while you are at it...

Maestro

[AlanBama]

It is the same for me, I don't feel like my brain is functioning at the level it did a few years ago.   Little things throw me off....  this is not good for someone who is trying to do accounting work!

My doctor pooh-pooh's it when I have brought it up, just as he did the lipoatrophy (you look fine to me is his opinion).    I'm considering leaving my I.D. doctor of 18 years, for several reasons....this kind of thing being one of them, but that's a different topic for a different time.   

You're not in this alone, honey....it is affecting a LOT of us.

hugs,
Alan

[emeraldize]

This is a fresh article and has some relevance to the thread.
http://simg.zedo.com/intercept/tag/int104c.html

[emeraldize]

Please try this one---for some reason the other one didn't copy properly.
http://seattlepi.nwsource.com/health/287304_hivbrain03.html

[ndrew]

Hello,

I have wanted to discuss this for a while and I am really glad this topic is happening.  As I teach, I have definitely noticed memory issues.  If I am tired (quite frequently), it is harder for me to pull something directly out of memory.  I just draw a blank.  This can be really hard when you are in front of over a 100 students...

Anyway, there are a number of questions I have.  First of all I would love for people to be more specific about what "brain fog" means to them.  Is it difficulty remembering?  Is it not feeling as alert?  Is it having a harder time sorting things out that you know used to not be as complex?  Is it bumping into things (sensory-motor)?  Does it effect vision at all?  What about clarity?  Focus?  Or staying on task?  Does caffeine help?  What about Aleve or anti-inflammatory drugs?  Do certain things make it worse, such as lack of sleep, stress, etc.?  Is there an emotional component?

Does "mental exercise" seem to help?

Sorry for all these questions, but as a prof. my brain is my job/work/life and I have a lot of concerns in this area.

Bests,
Drew

[GSOgymrat]

I've not noticed these symptoms but maybe I've been in too much of a brain fog to notice! I do have trouble concentrating on long, complex reading material when I am tired, but I've always been that way. I often work nights and at 4:30 in the morning I just can't read anything complicated and usually grab an Entertainment Weekly if I have down time.

A couple of years ago I think I had some kind of neurological event. I completely forgot my home telephone number and not just for a few minutes. I had to look it up and even then it was unfamiliar. I was able to learn it again but it was unnerving because I had never experienced anything like that before. I've not noticed any memory problems since.

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[Jeffreyj]

LoL Charles

I was talking to a friend. I forgot what we were talking about (lmao) but i noticed as i got really passionate about what i was saying, it was like the words were in my head, but I could not speak the words, and stuttered a bit. Another weird thing that has happend to me the past year or so. Just thought I'd share.
Love you all
Jeff

[southernfun]

I myself have noticed in the last few months that its harder and harder for me to sit down and concentrate on putting a job proposal together..I may visit the job 2-3 times and rewrite everything down, Then when I try to figure the quote even tho everything is in writing right in front of me I go blank..I cant crunch numbers in my head as fast or figure yardage...I thought it was just so many hours with so little sleep but I think its more than that...I was also talking to my brother yesterday and I told him I cant remember much before 2002..Its rather bad at time but then the next day Im back on top of things and sharp as a tack..I was told it was the getting 40 syndrone..Im 39 now....lol

[alberche]

Hiya folks,

I am only for 5 months on meds, and I often pass thru foggy moments... but this has happenned to me almost always, even before being infected (my infection is also very recent, only 7 months ago...)

For me, this has a lot to do with stress, tiredness, sleeping bad or being sad, not motivated or a bit depressed. HIV for sure should have effects on the brain, as well as meds.

I help myself with notes and trying not to stress anymore. Words, thinkings, ideas, images will return in a certain moment. If necessary, I re-do or review things. Routines are also helpful. And simplifiying is also. I mean, trying to take out of our daily activities those things we tend to do when they are not needed or just simplifying steps when doing things.

I have also taken some help from making some space at home, taking out things I stored but not needed anymore.

And, finaly, writting helps. I mean, keeping a daily or periodical diary or something alike, writing to discuse with oneself things and thoughts.

After all, we are all a bit mad, it is just a matter of taking a look, in little detail, to people walking on streets. So, I decided not to be stressed about it.

Hugs!

:-)

[Ric Wilke]

Dearest RAB (and everyone else),

We need to talk about this!  Obviously you are not alone.  I should say we are not alone.

Memory lapses are very common with anyone who has had an insult to the brain.  I believe that this virus attacks each of our brains.  The meds we take often times do not cross the blood brain barrier and therefore do not attack the virus that we have within our brains.

My beloved spouse, Thom, sufferred a brain aneurysm in May 2001.  He is HIV neg but still has memory problems.  I was diagnosed in Sept 2001.  I loose track of words in the middle of a sentence, words that I have used for my entire lifetime are lost.  Thom and I rely on each other for a single memory that allows us to function as a couple.  Most people don't even know that we fight this every day.

I hope that we can share with each other our travels down this life's road.  There is so much that we can share and so much support that we can give.

RAB, you are a one of a kind person.  This thread has all but ripped my heart out because of what I feel for you.  You are my brother and my dearest friend.

Take very special care and I love you, Ric

[grey_the_hunter]

Well, I think my post will be a little different - and hopefully helpful.  I can empathize with just about everyone on here, since I have had A LOT! of the same experiences.  It has been an interesting experience for me, since I have to do a significant amount of analytical and creative thinking (I do consulting and marketing type work).  There is a lot that I am required to hold in my memory - especially since I suck at writing things down and not losing the little peice of paper I wrote it on, ha ha ha... For me the work I do has been troublesome - but also a blessing (since the work MAKES me use my brain so much).

Because of what I do for work, I tend to be pretty solutions focused, and also tend to look for as much data as possible.  AND I'll ask anyone to forgive me if I end up coming off like I think I know everything, ha ha ha -- jeeze, the more I go to school the more I realize how much I DON'T know(I happen to be back in school after a long time out, and found I really love neuroscience, which is COMPLETELY different from the type of work I am doing now).  Anyway.... I'll try not to lecture, but I'm sure now that we know we aren't in this alone, some people might want some info that could possibly help a bit with the brain fog issue. 

As you probably all know the brain is amazingly complex, and pretty much every system is interconnected.  So unlike with the rest of our bodies, it can be hard to pinpoint one area/structure as a "cause" for symptoms or disorders.  With the brain, you can have two people with nearly identical symptoms who have very different things going on that cause those syptoms....  So what does this have to do with brain fog?

There are a few things (one or a combination) that can be contributing to it - and some of these things we can do something about:
 
HIV Meds - many of the anti-HIV meds do not have good penetration through the blood brain barrier.  This means they are not as able to effect the reservoirs of the virus in our brains.  You can talk to your doctor and ask if there are other med options for you that could help (BTW Combivir/AZT and Sustiva BOTH have excellent penetration into the brain).  As a general rule if the medication is more lipid soluble (it gets absorbed by fats) it is better able to penetrate the blood brain barrier, and therefor effect the HIV that is hiding out in the brain.

Stress - I don't know about you - but having HIV and worrying about health, relationships, work, etc Stresses me the heck out.  Unfortunately one of the body's responces to stress is to release a hormone called Cortisol.  Without getting into it, this isn't necessarily a bad thing unless you are under stress for long periods of time and your cortisol levels remain high.  Constant exposure to the stress hormone, cortisol, damages cells in the hypocampus (a structure in the brain).  The hipocampus is critical for the formation of new memories - and for the reconstruction of old memories.  Therefore, damage to that area can make it harder for you to remember something form the past - AND to turn short-term memory into long-term memory.  I found that Kung Fu helps me a lot with my stress levels (physical exercise of any kind is good).  I have friends that do yoga instead - but I'm to hyper to sit and be quiet for more than 5 minutes at a time, LOL.  Anyway - any damage to that area of the brain doesn't mean all hope is lost.  There is clear evidence that as long as the hipocampus is partially intact, your brain can adapt - and cortisol isn't necessarily going to completely destroy that structure.  Just do what you can to get rid of some of your stress, and if that is part of the issue, then your brain Will start getting back on track....

Fatigue - I think this is self-explanatory.  If you aren't sleeping well, or are constantly woken up, then you don't get quality rest and your brain doesn't "re-charge" (basically, your brain cells don't get the opportunity to effectively remove toxins, waste, and other neurotransmitters that lead to fatigue if they are "awake" and in use).  Stress can interupt your sleep.  Also - sleeping pills often do not allow you to get the kind of deep sleep that your brain needs.  Personally, I think it is better to try meditation, nutrition, supplements, exercise or something else to help get the Quality sleep I need.

Inflammation - Our brain's are incredibly delicate.  Inflammation, while being a defense that is meant to isolate the damage in one area, can be really bad over the long-term.  Unfortunately, among the many things HIV can do in our brains, is cause wide spread and pretty constant inflammation.  I agree that any anti-inflammatory can help with that.  Just talk to your doctor about any Gastro-intestinal risks (like ulcers) before you start daily dosing them.  Another benefit of anti-inflammatories (like aspirin, aleve, tylenol, etc) is that they can potentially help with the inflammation in our guts where a large percentage of the HIV is hiding out and help our bodies start producing more immune cells there (very important since our mucosal system in the gut is a BIG part of our immune defences).

Nutrition - As far as I know, no one has figured out exactly why we tend to have nutritional deficiencies (personally, I have the feeling it Does have to do with HIV hiding out in our intestines, and maybe also because of some of the drugs).  Nutrition is critically important for all of us.  One of the common vitamins poz people may be short on are the B complexes (especially B-12) which are VERY important for mental health - in fact we use up a lot of B vitamins when we deal with stress.  I usually take (don't laugh) a children's vitamin once a day, since I don't wanna OD on one kind of vitamin and cause other problems.  I save my major vitamins (that have higher % of the RDA) for when I am having a particularly hard day.  That seems to really work for me.  I also take an Omega-3 fatty acid supplement (these can be fish oil - OR flax seed oil).  Omega-3 deficiency has been linked to depression among other neurological problems.

A couple of people mentioned stimulating games.  For what it is worth, I agree that ANY stimulation is way better than none. I think because my work challenges me on a daily basis to be creative, be analytical and find solutions - I have more good days than bad.  That's in part because even though we have literally billions of brain cells, it is the connections between them that are most important (this is one reason why stroke victims can recover a portion of the previously lost functionality - because there brain makes new connections to replace the function of lost connections due to cell death).  I think the more we challenge ourselves (as long as we don't get frustrated, anxious and discouraged) the better we can do in coping and alleviating the fogginess in our thinking and memory. 

OK - I'm done with my lecture -- and I certainly hope I didn't offend anyone - AND more importantly that maybe a few more of us feel we have options and strategies to maybe get our minds back.  I never liked the idea that this virus Hijacked my immune system (and with it many of my goals and dreams) but I  will be Damned if I am going to let it take over my brain without one heck of a Fight!

[u/b]Good luck to you all!!!! and much love [b/u]

[RAB]

Hello Grey T H:

First let me say;  Welcome to the forums!   


Thank you for taking the time and expressing with such depth your suggestions and observations.  I found them not only interesting but helpful.

You said:

I certainly hope I didn't offend anyone - AND more importantly that maybe a few more of us feel we have options and strategies to maybe get our minds back.  I never liked the idea that this virus Hijacked my immune system (and with it many of my goals and dreams) but I  will be Damned if I am going to let it take over my brain without one heck of a Fight!

You certainly haven't offended me, in fact I feel like I owe you lunch!     I appreciate how thoughtful and detailed you've been, like you I don't like how HIV has impacted my immune system and I too don't want to cede anything more than I have to without a fight.  I'll try anything I can to repel the impact I've talked about here. 

Thanks again.

RAB

[grey_the_hunter]

Awwwwwwwwwww.... Thanks!      I am totally flattered.

and for the record I rarely turn down a free lunch, ha ha ha ha ha ha ha

But more importantly, I'm glad you found the post useful.  I personally have a really awesome Dr (who also happens to be one of the formost researchers on metabolic issues associated w/ HIV) but I found even as good as she is, she can't stay on top of all of the new news.  So I figure, this is my illness, so I might as well learn as much as I can.  It can be tough - sometimes depressing - but I also find it sometimes invigorating (especially on those days I am feeling a little lost and hopeless).

Anyway - I'm rambling (which I tend to do a lot  )

OH - and before i forget -- Thanks for the welcome 

[SouthSam7]

Gosh, I see that I'm not alone!  I'm awaiting my testosterone level test but I have a feeling she'll say it is normal.  It's interesting that I am aware that I don't feel as "intelligent" as I used to be.  That's a strange feeling.

I've missed you all! 

Love,

Sam in 'bama

[Catman]

It happened to me today. I was in a company information booth and while I was in the middle of some sentences "poof" I would totally forget what I was saying. I would either improvise or begin a new sentence. It was very frustrating because I like explaining things to people or just being in daily conversations in the workplace. I am also forgeting the names of people who work with me. This is making me shy out of job postings because I don't want to feel like a jerk in the middle of an interview. I don't relate it to old age because I'm not that old. When it happens, I try to calm down and just reorganize my thoughts. It doesn't always work but it's worth the try...

[jmil51]

RAB - Since a lot of people are putting in their two cents worth, I'll add my $.01/2 in..  I started noticing the same thing you are describing back in 2001.  I quit reading everything, even the daily newspaper comics because nothing registered.. I attempted to balance my checkbook, but after only a few minutes gave up cause I couldn't even add 2 + 2. 

I was diagnosed in 1991 and immediately started on the meds. So I don't think I can blame my "lame Brain" on them.  What I did finally realize is that as my brain quit functioning, my stress was increasing.  I went on disability retirement late 2000.  Broke up with my partner a few months later.. Sold my house and moved to a new area.  I also started having problems with avascular necrosis..In other words my life was going down the hole.

The lame brain continued for several years. My doctor even diagnosed "DEMENTIA".  I was taking anti depressant and anti anxiety medications all through this time period.  Finally in 2003, I realized I was slowly regaining some of my mental capacity back.  This coincided with my health and social issues slowly starting to improve.

I have now stopped taking all anxiety and depression medications and have regained most of my mental functions.  I attribute the loss of my brain capacity to the stress, depression and anxiety that I was experiencing at the time.  I do know my Doctors diagnosis of DEMENTIA was wrong based on what I have read about dementia since. You just don't recover the grey matter if you have dementia..

I still have my "senior moments" where I can't remember something, but anyone 55 years of age has those moments as well.

Don't overlook anxiety and depression as the cause of your lame brain.  Good luck.

Jim

counts now holding at 13500 and viral load undet for two years.

[Queen Tokelove]

Wow! I see a lot of people are affected by this. I must put myself in that class as well. I did not know this could happen from hiv. I would laugh and blame it on the weed. I have been smoking for over 15+ yrs, started out being recreational but then tuned medicinal for me because I did not eat. My doctor knows I smoke weed, had tried to give me Marinol, but all that did was make me dizzy. I know for smoking for as long as I have that I have indeed burned some brain cells but is by no means a burnout. A pothead yes, a burn out no. I do things to stimulate my mind. My favorite thing is playing the playstation and playing Resident Evil, for those of you who are gamers, there are enough puzzles in that game to keep you thinking, I also play it when I am stressed. I also like to play Mah Jong, that seems to help me too. But since reading these fog posts, I will definitely have more questions for my doctor when I see him next.

[Darren]

 
ya know, i had this sneaky feeling about this, i thouhgt it was society puttiong too much info into my
brainstream, but reading this, maybe i will ask my Dr, as i thouhgt it could be early alzheimers, as i am only in my 40's.  This is good to know about, thank you for posting this!
:Darren [/font]

[Henritx]

OMG  Am I glad I have seen this 'old' thread.
Indeed I have noticed many of these symptoms.
Though I have always been bad at restaurants names and people names
I could tell what I had to eat, the decor, or someones job.

So I got HIV and it worsened. or was it age?? I am 48 now. 45 when I dx'd.
Now I think it was 1) STRESS, 2) stress, 3) maybe drugs.. esp anti anxiety ones.
Ive felt dumbed down ever since I used them.. but am much better with than
without...for now.

And now I know that stess physically impairs the brainwhich was news to me.
I didnt realize extended stress could actually hurt you physiologically.

From now on I am taking B complex vitamins, doing vigorous yoga daily
and continuing my pet learning projects of satisfying my curiousity of the world.
That stretches my brain..... hopefully.

Thanks for eveyone's previous posts. The knowledge has made me much more comfortable
if not outright enthused. Its NOT just ME!!!!!!!!!

PS   If you read this post..please leave a message if youve got similar experience.

[dgr20002]

I just found this thread too, since it was revived. I have terrible short term memory. I sometimes forget where I parked the car the night before. My bigger problem is that my mouth won't keep up with my brain. I know what I want to say but mix the words and stutter. It happens most at work when a situation arises that needs a quick answer. My doctor says I am getting old (at 46).

I also can not focus on tasks. For instance I think emptying the dishwasher is such a chore I need to do it in steps. Sometimes it takes a whole day. I wouldn't say the house is a mess, but I used to be very neat and tidy and now there is stuff everywhere and I don't care. I live alone so it is no big deal I guess.

I have been poz more than 20 years and on and off meds all that time.  Today I take Lexapro, Reyataz and Epzicom. I do feel like things are just harder to do and in general have to make lists for everything.

Thanks for talking about this. I read 60 posts and felt for a long time it was just me.

David

[allopathicholistic]

My doctor says I am getting old (at 46).

Well your doctor must be living in the past because 46 is middle age. Get this, I toasted bread, removed the crusts (cuz they're bitter imo) and placed the crusts in a bowl for later disposal. Instead of tossing the crusts I stuck the bowl under running water including the crusts. I never usedto do weird stuff like that.

[LTSurviver]

I'm bumping this old thread to say another "me too" here.

For most of the 22 years I've been poz I have had SEVERE trouble with names and nouns.  Also memory, especially short term.

Oh, and focus.  Sometimes it's like my mind has mud in it.

I've just started the meds 3 months ago and I see no real change in this.

[Jeffreyj]

Maybe we should just name it. Then we can accept it and we will all know what it is by it's new name!


Exciting I think. Let the name contest begin!


I like Moff's BF= Brain Fog.

[Being Swiss]

I've tried to read  your posts carefully. Yet this may already have been mentioned: So-called "subclinical neurological problems" can already occur at an early stage. - I probably caught the virus in 1981, and became  victim of a writer's block in 1983 (it lasted until 1993).  And I had always been a very productive and reliable student!

About a fortnight after having started with AZT the problem literally disappeared, and I felt an urge to write long and well formulated letters (in German, of course  ).  I've enjoyed many meds since then , and the "fog" came back after some years. I have my daily and weekly plans, which my mum (a rather impulsive person) doesn't like very much. But they are necessary for me. - I even find it difficult to concentrate on a movie; that's why I spend a lot of time in forums writing unnecessary posts.

The whole problem should be discussed. Research is necessary, though difficult. It means that one's quality of life can severely suffer.

Bruno

[Winiroo]

I used to say its cause I have "HIV in the brain." 

brain farts, whatever you want to call it.


Sometime around 1993 I had a real tough time with this. I would wander around the house trying to remember what I had gotten up to do. I would go in to the bathroom and stare at the junk on the counter trying to remember what I was going to pick up off that counter and why.
Couldn't remember if I ate. What I ate. stuff like that. I got seriously thin and way whacked out.

I honestly could not tell you what snapped me out of it. I gained weight eventually. More than enough actually. 
I do occasionally have a brain fart or trouble remembering things. But it is nothing like the experience I had in 93.

[anniebc]

See!!! this is why "Dirty little secrets" should stay secret..even after 3 years secrets can come back and bite you in the backside....or did you forget about that RAB..

Hugs
Jan

[BM]

Another "me too" post.

I've been positive, probably since the end of 2004. Since then I've noticed all of the following at various times and to varying degrees:

1. Struggling to remember words. At a job interview I started a sentence three times and could not remember the (common) word I wanted to use. I didn't get the job!
2. When searching for something, say a book, I could be looking directly at it but am unable to see it; that is, my brain doesn't make the connection that I have found the book I am looking for.
3. Inability to express myself fully in conversation (much to my frustration!).
4. Getting tongue-tied.
5. 'Zoning out' in conversations.

[LTSurviver]

BM,

Yep.  It kills me that I can fully grasp a concept, but cannot vocalize it.  It's extremely hard when you lose words... especially nouns.  Everything has become a "doohickey" "whatchamacallit" and "thingy." 

Zoning out is another problem.  It's like a social disconnect.  I've even walked away from people who were talking to me not meaning to be rude at all, but simply because I lost all focus.

I've also taken to interrupting people so I can get a thought out while it's still there.  It's not that I mean to be rude... but if I wait, it'll be gone.

The funniest thing?  People tend to think I'm rude, arrogant and inconsiderate because of these things... but it's not like that at all.

[Steinway]

Hey man, I know what you are talking about.  I used to feel this way all of the time,  but it's not just us.  My sister that has undergone chemo, radiation, and other forms of treatments for cancer is spacey now.  I'm not sure if it's the disease or the treatments, but I do know that I no longer feel that way.  I used to sort of feel down about it.  Like I couldn't remember what day it was even.  I felt it was HIV of the brain too.  If I thought about it enough I even thought I could feel it.  The power of thought I think. 
   Well,  I have made some changes in my life over the past year and have noticed a big difference in the mental side of things.  I am on Atripla.  I don't know if that fogs the brain or not, but one thing I do is make sure i get enough sleep every night, more oxygen helps the brain.  Less sleep, less oxygen and less healing every night.  Another thing I do is work out at least twice a week.  Nothing too major, but enough to lose about a pound a week, or a pound every other week.  More of a maintenance really, but in five months I have lost 19 pounds.  Not the fastest weight loss, but it's not something that I am hitting as hard as I could and I'm okay with that.  I've also changed my diet quite a bit.  I no longer drink pop.  I haven't had an alcoholic beverage since New Year's, but even before that  it was really only maybe one glass of something a week or every other week.  I noticed that alcohol, even the stuff that's supposed to be good for you (red wine), it just has a negative affect on my body.  I think that is do to combining it with Atripla.  So now I simply drink water, and organic juices in moderation.
   I have cut down drastically on fast foods, pizza, big meals, etc.   As a result of all of this I think my brain is a bit younger and more alive.  I also challenge my brain more with memory games, reading, anything that would stimulate the brain.  Less time watching tv, less time on the internet. 
   I have heard that Alpha Lapoic Acid mixed with Acetyl L-Carnitine is a good mix for anyone suffering from memory loss or aging issues.  I know cancer and hiv+ people do experience some early signs of aging.  I would do some research before adding any type of vitamin or herb to your intake, and also as they say, consult your doctor and pharmacist.  Having many opinions will help you make your own judgements.   I tend to do a lot of reading on issues like this when I am concerned for myself or others I care about.  You've got to love the internet. 
   I am wondering if there is a thread on this site under nutrition, Mental Health, or maybe some of the long term survivors have posted some advice or experiences.
   Best of luck to you,  Steinway