Brain Fog

[bunkywoo]

Hi everyone:

Hope you're all feeling good today. Have a post-tx question to all you who have finished. I thought that after approx. 4 months after stopping meds that I had cleared up the brain fog issue. But, it seems to come and go now. Some days are really good and other days I can't remember what someone just said to me. Kind of scary. Hoping you guys will share your experiences with me.

Thanks and have a good day and weekend?

Laurie

P.S. Anyone heard from Travelmom about Amanda's biopsy results?

[Minttwist]

You're right, lackalustre, but I prefer to call it being 'eager to learn'...a thirst for knowledge.  Some people do and some people don't.

[lackalustre]

i was kind of obsessed before tx. and thats ok.  i got all the infor. i could.    there are those of us that have kind of obsessive natures.  not you necessarily deb.  but its ok if we do.  i try not to drive people nuts with it and work hard on it.    its in the genes too.   its also ok to be over emotional at times.  breaks the monotony.     sometimes its refreshing...

[DebbieDo]

My Goodness, I'm sorry, I didnt mean to start any trouble in here. My feelings were hurt, sort of! I come here everyday and read. IM NOT OBSESSED with this.....I know that we are all different.For me, it does help  me to understand things from reading the post here.  Instead of trying to understand all the technical stuff from all the other information sites on Hep C and TX.  I have been lurking here since the beginning of Aug trying to obsorb all that i can.  Before my ultra sound, i didnt know anything.  After that i had my first visit with my GI. I got a booklet/video/Med info......I read it 2X ....then i found this site.  I had my biospy and returned to my GI.  He was surprised at all the knowledge that i had acquired. I told him about this site and how please i was to have found it. I want to be apart of this forum and i dont plan on leaving.  :) thanks for all the input.......Deb

[AK - Hepper]

I wasn't trying to be snide or judge harshly and if it came across that way I apologize. Maybe you misread my post, I told Debbie I DIDN'T think anyone was trying to run her off. And yes, you're right, my meds have been getting to me for about seven months now, so when I make an insensitive remark I hope no one holds it against me, just as I try not to with some things I've read here. We're all in the same boat, after all.

[AK - Hepper]

you stick around and post all you want, you just have to realize there's a lot of grumpy people here because of the ribavirin. I'm sure none of it's personal and I don't think anyone was trying to run you off. Sometimes you just have to have a thick skin and try not to take anything too seriously around here. We all get crabby on these meds, it just goes with the territory. Hang around, we need you here.... Timbo

[Galen]

I was not being grumpy or trying to run anyone off (maybe your meds are getting to you that you judge harshly).  I have been around this site for a lot longer than you and a lot of newbies here and have seen a few, very few, pre-tx folks really get to obsessing about bad news before starting.  My concern is not with learning as much as one can about the disease and tx, but with worrying over-much about the side effects and buying into all the really bad stories.  There are a lot of heppers who only post when they are having bad days and consequently, the postings can be overweighted by bad news.  No one writes to say what a mundane day it was, how they slept ok last night.  You know, a day-by-day accounting of getting through life.  Yes, some days you are the bug on the windshield, but some days you can manage life ok, clean the house, fix dinner, watch tv with family or a friend.  Most of us on tx ARE able to work full-time, and manage to carry on with the chores of daily living, at least part-time.  Some are not because of really bad sides, but they are in the minority.  I was concerned that I would not be able to work on tx and, as I am my own sole support, I must work.  My doctor told me that, yes I would be able to work, but not much else.  I believed him, he was right, and I took one day at a time, one foot in front of another.  Too much fear of what might happen in the future keeps us from living fully in the now and now is all we truly have.  
If you disagree with me, then fine, but there is no need to make snide remarks about medication (I am finished, by the way) or accuse me of trying to run anyone off.

[Ambush]

I agree with Terriri.........I needed to know all I could about what I was about to start.  I didn't "obsess" about it either.  It really calmed me and prepared me for tx.  By the time I started, I was well prepared and am doing well and I thank the folks on the forum for helping me along the way.  After 5 months on tx, I now realize I got better information here than anywhere else. I don't think wanting to know all you can is a bad thing.  Stick with us.
ambush :)

[terriri]

I DON

[AK - Hepper]

I think you should get all the information you can before you start treatment, not just here but other sites, too. Yes, you need to get things in order before you start, too; but you also don't want to go into this ignorant in any way. You need to be able to tell if your doc or nurse is doing something stupid.
Go to the library, get books that deal with hep c and doing tx, go to more formal hepc sites and read up. Don't obsess too much about all the "horror stories" you see here, you might have a fairly easy time of it, remember that the people who have an easy time on tx probably don't spend a lot of time at these sites. Most of all, when you get your meds, read the info sheet that comes with it, that tells you everything to expect and when you need to be get something checked out. The tx is not as bad as it sounds, most of the stuff you hear on these sites is just people venting frustration at not feeling 100%

[OkieJim]

Hi there,
Alot of info huh???? I did exactly what you are doing before I started. I did #5 last night.  Do try to do some planning for the TX time. I didn't do it soon enough. I had alot of hard labor to get done around the place before TX. Of course the weather here in Oklahoma didn't help blew the roof off my little garage just before TX started. Shoot. I barely got it done before I started getting to dizzy to do anymore labor stuff. Now I just do a little at a time, it still gets done just takes longer. And also I have found that if I don't get enough rest then I feel worse. It's not been horrible for me just yucky. This forum will be here for you whenever you need it. To each their own. I have been here all the time and I don't feel bad about it. Personnally I love to see how other are doing and want to help others feel good about what they are doing. God Bless You. We are are rooting for you with whatever you decide to do, what ever you do it is the right thing.

[DebbieDo]

I do have my things in order......I AM ready for TX......I guess some of my simple, but, sincere questions have annoyed some of you......Sorry.... I guess i shouldn't post here anymore....
Thanks to all of you for your advice...I do appreciate it.....Best of luck to all of you......I feel sad.....I sort of felt i had a connection here, now I'm not certain..
Yes, and some of us NEED this.......to understand better....

[Galen]

Please try to stop worrying about what may or not happen when you start tx.  Personally, I think that people who have not yet started tx should limit their time at this forum.  It is too easy to have your life revolve around the fear of what 'might' happen.  Now is the time to get your life a little more organized and try to forget about this for at least most of your days until you start.  I know how hard the anticipation is - we all do.  If there is a support group in your area it can be helpful to be able to see other heppers in person to know that there is life before, during, and after tx.  Please take care and get out of this forum once in a while.

[DebbieDo]

These posts have been very interesting. I have mild fibrous and i dont know my VL yet or my genetype..Not til the end of Nov.  Wanting to learn all i can from the post about sides...This is such a wonderful site...

[Sioux]

I used to call that "over 40 syndrom" haha. Mine started a few years ago, but is alot worse since tx. I have fibrosis grade 2. So maybe it would depend on your liver damage ? (just wondering)

[BethUK]

I was getting a bit forgetful before treatment and I had a low viral load and mild liver disease (just inflammation).  Didn't eat much meat either!
Most of us are in our 40's - maybe some of it is to do with the ageing process.  I think sometimes we tend to blame everything on the HepC and/or treatment

[latrobe]

sorry--i so understand. you'll become accustomed to he damage, and here's hope we will recover
just read this:

[jonihs]

I also don't eat meat and because I had liver failure, I get my ammonia level checked frequently. It has stayed normal since last Dec.     Joni

[mofo]

It is becomming more apparent that treatment is "sometimes" a double edged sword.  Many people are now reporting "brain fog" and other issues post treatment.  I have personal experience with this problem, and was recently told that due to the problems arrising from my first bout with the chemo, I should not treat again.  The words from the dr. were " even though you may clear the virus, your quality of life after treatment, might not be worth the the price you will pay." Obviously, not all are affected this way, but it seems more and more people are. If I could start over again, knowing what I know now, I would not have treated.  My liver wasn't at critical mass. I decided to treat because I was scared.  I thought the aggresive approach was the best, and with my geno-type, chances were good at being successful.  I had no idea  how wild the ride would be, for me. Just another 2 cents-----------------------

[jonihs]

I left to go check out that web-site, then couldn't remember the address!  LOL    Joni

[jonihs]

I am pre-tx., have "barely compensated cirrhosis" and have brain fog. I have to really work to remember things that used to be a breeze. I set things out in my mind in steps so I won't forget anything, then can't remember if I took all the "steps". I take no sleep aids or A.D.s. I'm a firm believer in what you said about blood brain barrier, and that the degree of brain fog can depend on stage and degree of liver damage.   Joni

[willing]

reading this thread has brought on the dreaded heebee jeebies .. a big reason I decided to go into tx was because of fog..now you guys are saying it might not lift. There's an ever-growing pile of evidence supporting a link between HCV and "mild" cognitive dysfunction - though no basis for a mechanism yet. I had hoped mine would reverse if and when I  clear the virus.

This is completely uninformed speculation  but, as far as tx-induced cognitive problems, my instincts are with britgirl/tesstube. However, in my case, I really could not cope by the time I started on Lexapro and don't want to risk dropping it until tx is over...

PS:I like mackys attitude - if you're going to have cognitive dysfunction - relax and enjoy it. You'll soon forget whether  it's a  problem or not.

[TravisB]

I am really curious about what you mean by brain fog.  I'm seven months post TX and still have mild fatigue which is what I believe what causes my (usually) mild "brain fog." It's an inability to concentrate on things for too long but I feel like it's just an offshoot of the fatigue, not a  stand alone symptom.  ARe there any studies regarding brain chemistry for hcv people that shows that our brains work differently from those people who are just plain tired?

[jonihs]

This is my personal opinion and is based on my own logic only. I think that the higher the viral load and the longer you have the virus, the more cells can pass the blood brain barrier. Therefore it seems to follow that the more virus in the brain, the more brain fog. I also think that the longer the virus is in the brain, the more damage and less reversal. That's why I'm so interested in studies pertaining to this factor. Just my opinion, & I could be wrong.

[bunkywoo]

I've been reading the comments about HCV and how it can affect the brain. I was fine before I started tx. Now I have a hard time with short-term memory, concentration and feel like my brain just doesn't process as quickly. So I think, in my case, the meds and not the HCV has a bigger role in this. Otherwise I feel great, which is the up-side of all of that!

Laurie