Brain Fog

[Rittmiller]

I have been suffering with "brain fog", or at least that's what I've come to believe it is. I have Hepatis C and I do not know how long I've had it. I had a liver biopsy in 2001 and was told I had stage 2 liver disease. My liver enzymes are always slightly elevated and I have occasion pain and vomitting. My ammonia level is normal. Could Hep C really be the cause of this "Brain Fog" and if so, what can I do to improve my mind? I am an ICU nurse and I try not to self diagnose. My doctors are not Hepatitis specialists, and my GI doc admits to knowing little about Hep C. My PCP is very wet behind the ears and has not even heard of the term brain fog. I am in the Kaiser system so my hands are somewhat tied. I have been doing alot to self educating to get proper care. Thanks for you help.
Louise RN, BSN

[Califia]

Wow.  Beautifully said.  Do you remember Chauncey the gardener from "Being There?"    Not such a bad person to be, not at all.

[Micro2]

Ahhhhh...The fog. It would seem that I am the only one, (and those close to me), who know just how fogged I am. Yeeeees...the fine art of walking through life as though everything is wonderful. I am truly NOT the same person I was before tx. Even my doc has admitted that! I have trying to figure out who this new guy is so I can proceed with life. I tend to gravitate toward the other person way and just get lost in the shuffle like a kid in the grocery store. Rather than freak out (like I did at first), I have chosen to embrace the new guy and I rather like him. Of course he cant do much physically or mentally and he seems to need lots of rest but people like to sit and chat with this person. He is really not that bad!! The other guy was always trying to be the boss and have things done his way(which of course was the right way), but the new guy has no choice, he is at the mercy of many so worry does no good. He is powerless over people, places, and things. He now swims(or floats) WITH the current. Life seems much easier and simple when you wait for the sun to come up instead of pushing it to meet your schedule. God does not need my help but I sure need His! I prayed to be taken many nights on this tx but was not. My journey is ever changing. each day is both different and never what I plan or expect. What now? I dont know. I will try not be upset about it. That way I may enjoy some of it. To me.. the fog is like a subculture...only those who are there, understand it and when I meet someone who is also there...we have fun!! Tlak to post chemo people. You will be amazed at the commonality of feelings and issues. Lets trudge the road of happy destiny!! Can you tell its Sunday and my first cup o joe!!

Be Cool, Michael

[Califia]

Forgetting has its definite advantages!

[cuteus]

HAppy b-day, how can you forget THAT? is this an April's fools joke?

if you had stage 2 damage, I would get a bx every 3 yrs, and I would be thinking about treating or going on maintenance to prevent further damage.
Hope you get that job, it sounds good for you!

How can you forget your 50TH!

[Rittmiller]

I recenty bought Bourne Legacy too but haven't started it. Am ready Patterson's 2nd Chance. I haven't been too foggy today. I am awfully tired but can't unwind. I worked today. I work in an ICU in a long term acute care facility. Mostly ventilated pt.s but I am getting too old and tired for the physical aspect of the job. I applied for a job as a hospice nurse and was offered a job after two interviews and a ride-a-long. But they want to talk to my current boss before finalizing things. I hope he gives me a good word because I need to change my line of work. It will be less hours shorter days about the same pay with better benefits.
I'm thinking about having another biopsy this year sometime. My last one was in 2001. I was stage 2 grade 2 then. Any thoughts? Is it too soon?
God bless all,
Louise RN

[Rittmiller]

OH by the WAY!!! Today April 2nd is my........
            50th Birthday!!!!
I am going to ride my Harley with some of my girlfriends and go to lunch. Then Hubby has something planned. woo hoo!
Have a great day all!! God bless.
Louise RN

[donAlfonso]

Last night I picked up my copy of The Bourne Legacy and had to go back 10 pages from my bookmark before I could remember who/what/where/when.  I was so mad at myself.  Sometimes I can laugh, sometimes not.

Great thread.  I hope I can remember that I read it tonight when I pick up my book again.

dA

[layla]

Make sure you are having your TSH tested (thyroid) and it is at least under 3. LL

[Califia]

As you're new to this list,  you may not realize yet that none of us are in the regular habit of getting real personal.   That's not what this is about.  There are tons of smart people on this board.   We are here to share our hepatitis knowledge, both theoretical and anecdotal, and to exchange information about what our various hepatologists are doing and thinking across the country....a kind of information that can't be found in medical journals.   Primarily we are here to support each other through interferon treatment.  As a patient I do not appreciate being told--by anyone--that I'm not experiencing what I'm experiencing.   It feels like invalidation, which I do not come to a support board to experience, especially a board that has come to feel like a second home.

[Forseegood]

Hey, just wrote that when i was real punchy, you know, my own version of brain fog. From now on i'm going to try to have someone gauge my punchiness other than myself when i'm up that late. What I hate about the written word in communicating is you can't put in a wink wink. Or perhaps you can, but I don't like those little smiley faces, but that's just me.

I just meant that on your worst days you're better off mentally then most people. Like, you're real smart! It's a good thing! But I do know people who are on tx that are really frustrated that they don't come up to their own high standards, which is understandable. I go up and down, maybe most people do, feels like failing faculties or moments of clarity.

[Califia]

You wrote:  "Sometimes if we don't come up to our own high standards for ourselves we can exaggerate the importance of some percieved impairment. "

Uh, thank you for your post, I guess.   Nothing like starting the day in a state of embarrassment.   Btw,  what it feels like on treatment--catchy little pop tune, isn't it?--is unimaginable when you haven't experienced it.  'Nuff said.

[cigaso]

Califia,

I wrestled whether to treat or not, but I did not want to pass it on to family. Thanks for your support. I find it is as important as water for our tx, but you never grow weary from it.

Revenire,
Boy you said it brother. I wished I had 50 bucks for every time I lost my stash. It's good to know the "fog" lifts.

TonyZ,
I always look forward to your input. The knowledge I gain from  you and everyone else here is invaluable.

[Amerabrit]

Brain fog was an issue for me while on tx but like Rev, I feel much sharper now I'm off, but still a way to go.  The thing is this though, all of my friends from those in their 30s to those in their 60s all report the same type of brain fog; losing track mid sentence, short term memory loss, etc.
Don't you think our lifestyles have a lot to do with increased brain fog; just too much on our minds?
I'm wondering if I am just not as concerend about times and dates as I used to be which is why I need to write most things down otherwise it's gone?  Or, my brain fog is worse than I think it is?  
Things that make you go: "Hmmn!"

[gr8faith]

I too, am on Kaiser and have found my care/tx to be very good.  Upon being dx, my internal dr ordered all the labs that my gasto would need prior to my first appt. w/him.  From the bx to tx, the nurses, docs, pharmasist, all have been great.  My only complaint is that my dr says there is no need for a 12 wk PCR and I am now at the half way point (12/24)

He told me this week, that I can call today to get my ALT and that should show if I am responding.  I questioned the PCR and he said "We don't do it yet".  I wondered if it was a Kaiser response not his personally.

I am just so ever grateful to be on tx, and that my co-pay for the meds totals 20.00 a month!  For me, that is key to being able to do tx.  So I will wait for the 24 wk, Liver Function Test.

Brain fog, had it all my life, (they say I have had HepC for over 25 years, I am 43 years old)  I do have my moments of clairity and look out cus I turn into a Tazmanian Devil getting things done.  Then it is back to being close to lathargic!!!

candy

[Rittmiller]

Thank you for all the helpful information. I don't work for Kaiser but I do have them as my insurance. This may change as I may be changing jobs. It seems like everytime I attempt to address my Hepatitis, something else distracts me and I put it off. I know, I can hear all of you  from here. For example, I am having foot surgery in April and will be convalecsing for three weeks... Those of you who are familiar with Rosanne Rosanna Danna's grandmother, "It's always something." I have a very poor short term memory but my long term memory is totally intact. LOL!!!!! I'll be 50 on Saturday, maybe that's part of it too. God bless all.
Louise RN

[Forseegood]

Brian fog shmog, you are one of the brightest women i've ever had contact with, phooey!!! Sometimes if we don't come up to our own high standards for ourselves we can exaggerate the importance of some percieved impairment. Bush should have the brain fog you have, he'd do better... Anyway, you'll get back your high standards when youre through with tx anyway... lil big mouth.

[Califia]

Nothing like a good scientific study--or a little touch of scandal--to wake us all up, wot?  Carolhab, and family members one and all, you hang in there.   It's wonderful and strange to feel such chemical detachment  from one's immediate surroundings and yet also such a sense of sheltering reality and intimacy with so many invisible friends.   The Church of Interferon lives.

[carolhab]

Hello califia - thanks for the great info, as always - and I hope you are sailing through the last weeks of tx... or paddling with both paddles, anyway.....
I am 16 weeks in, and have been fighting the brain fog bigtime... but alas, I think it is now winning...  I am still working, but don't know for how much longer - I feel like maybe one of these days my brain will just freeze up or I will make a huge mistake, and I will just go home and play with my cats for a few months...  It's funny, this fog has all kinds of presentations and variances, today it was just so bizarre - I felt really detached from the world... my best times are between 1 and 4 p.m. mornings are blurry, nights are blurry.  I also experiance kind of an almost surreal presence at times, and it can be kind of trippy - so this stuff definately plays with your mind..... but it's encouraging to know it will go away after treatment, and it does come in handy as a 'truth serum' (yes, Califia!) to sort out one relationships in work and like.. mixed blessings, no doubt...
peace and blessings to all
sammy

[new-sojourn]

I find the pre-tx 'brain fog' and encepalopathy is now a great blessing in disguise post- tx and currently 3yrs SVR.

Any unpleasantness in the 35yrs I was infected is now just wiped out and I don't have to remember it @ all.  B/I have no problem reconstructing pleasant memories.  And I just blame it all on the hep c!  ditto w/past emotional outbursts and forgotten promises.

i do have to watch my diet now like a hawk b/c I really don't want any ammonia build-ups and 'foggy days' now.  I have yrs of reading to catch up on.

[Califia]

Wicked!  And no, no subtitles for you....until I start speaking in tongues, of course.  With seven more shots anything is possible.

You know, you just perfectly described my own mental abilities on tx:  short bursts of  profficiency and then profound brain fatigue, inability to concentrate or read long enough to  cover real ground.   You'd laugh if I told you about the kind of work I thought  I was getting done this year--so to protect the innocent and even the not-so-innocent, I won't.   Too darn humiliating.   But even so, this pegylated interferon is infinitely kinder to the mind than the earlier stuff.   As I remember, producing anything beyond a simple sentence was exhausting, conversations were very hard to follow, and for all this the success rate for monotherapy was only around 10%.   Talk about adding insult to injury!   You got to be dumb, mute,  _and_ a treatment failure.

Nervous sytem involvement?  Well, yes, but there are always counter-measures.  Just wait til DoubleDose returns as this is his particular research specialty, and a grim one at that.  All I can suggest is that you try not to stress overmuch about our multi-talented little bug.  You're being proactive by trying to eradicate it and that's all you can humanly do.   Just concentrate on getting through this treatment with as much self-love as possible.   And take pride in the fact that you're doing the right thing, because doing that is never easy.

[cigaso]

caili,

I'm not being impudent, but will you tell us what your post means since we have brain fog and our cognitive skills are diminished?

Actually, thanks for your post.

This is for everyone and for what it's worth:
I am by no means an authority on HCV. I have had it over 30 years, dx 11/04 and started tx last week. I am 1b, vl 2.5mil and bx grade 2 stage 1 with mild fibrosis. I felt my cognitive skills have been suspect (lacking) for a long time. I was some what relieved when I was dx. I knew there was a specific medical reason for my perceived brain fog and the occasional all over malaise feeling.  I can only begin to explain the sx's concerning tx. Over the last few days, at certain intervals of the day, the brain fog lifted. My cognitive ability was so acute I read everything I could get my hands on. However, being acute, it was short lived. I now go in and out of brain fog. When I am in bf I have no interest in reading at any length of time, but I am hoping tx will change that.
That med report is a little scarey. It effects our nervous system? I really feel invaded now.

[Tallblonde]

Wow, what a compelling testimonial.  It's too bad that your mother was reluctant to continue taking it.  But I can understand her point of view.  Before being dx with HCV, I was extremely skeptical about "alternative" medicine.  Now I've turned 180 degrees in the other direction because the results are truly impressive.

(Disclaimer to all newbies:  HCV cannot be eradicated with vitamins and herbal supplements.  Interferon and ribaviron offer the only possiblity for a cure).

Thanks Califia!

Susan

[Califia]

Yes, we are all losing our minds AND we have a solid alibi.  :)    Reassuring, isn't it?

As for the Acetyl-L Carnitine, there's lots of additional documentation on the lef.org site.    (Speaking of  brain frogs, Tony, I just typed "sight."   Aargh!)    I first discovered it when my mother suffered an incapacitating stroke and was struggling to overcome cognitive impairment.    She did so much better when she took it (3 gms daily), but frugality and skepticism about supplements took over and the rapid advances she made just disappeared when she stopped it.    The difference in mental function was stunning.

Susan, it can definitely be taken daily and I had intended to while taking combo treatment, but I'm just surrendering completely to the fog right now.   Acetyl-L Carnitine definitely promotes mental focus and clarity without a "speedy" effect.   Still, I wouldn't take the second dose past the late afternoon.  

See, I sound high functioning, right?  But that took WAY too much effort to produce.  Wheel me away, boys....

[Tallblonde]

Hi Tony,

GARDENING!!  It's really a mindless hobby that brings me a lot of satisfaction.  I spent a hour this morning before work doing some pruning and loved it.  But I really miss the enjoyment I used to get from reading.  I do a lot of reading for my job and it's such a chore now.  No pleasure at all.

Susan