Brain fog

[mark747]

I am a geno1a stage 2-3 on my 3 shot of pegIntron with 1200mg riba. Sides are bearable except this brain fog. I have tried Provigil, along with diet change. It seems to get worse. I work a job that requires quick decisions with millions of dollars at stake. Everybody at work is noticing this. Now is the time where I feel that a decision needs to be made whether to finish or? I would hate to lose this job that has given me and my family so much. Any suggestions?
thanks

[nygirl7]

If it's possible for you to do I found that what really helped me was to really REALLY rest on the weekends when I didn't have to come in to work. I tried to build up some stamina for the week.  

Unfortunately week 21 is most likely too early to quit and achieve SVR however if you were UND at week 4 and could hold on just a few more weeks you might have a chance.

Brain fog isn't the worst side believe it or not - I don't know your situation but if you're having it this bad this early keep a good eye on your CBCs especially your hemoglobin. The anemia compounded with the brain fog is the worst for someone who is working.

I treated for 72 weeks and worked the whole time however - it was VERY difficult and I am glad I got SVR because I don't ever want to do it again.

Be careful please..........try and get assistance with things where you can and rest rest rest when you are able to.

[sfbaygirl]

It took me as long post tx and after a year, I am finally getting past some fog only to find out that the Fibromyalgia I got on tx causes brain fog too!  I don't remember you on the forum, Kirk. Were you here before?  I also relapsed.

I agree with Kirk, Hang in there, don't let it get you down. It does end and we go on with life.  Whether we relapse or don't respond or get SVR, life goes on and you will be okay.  I am finally going back to school to start a new career. I couldn't work during tx, I wasn't just prior to tx, but couldn't imagine teaching middle school kids on tx. I would have bitten one of their heads off and lost my job anyway!  Rely on those to help you.

Wishing you the best,
Linda

[KDH59]

For me it took over a year post treatment for that fog to go away. I think i still have some now even 18 months after....  But everyone is different........


YOU HANG IN THERE MARK.... DON'T LET IT GET YOU DOWN<<<<  Kirk

[sfbaygirl]

Sounds good that you have an asst. and a good sec.  Somewhere to bounce off things. At times my mind was as good as it ever was, then it was so bad I couldn't form sentences or drive a car. So as LL so politely put it, good thing you aren't a pilot or ground control.  You may go bite that pilot's head off on tx. Probably a good thing they keep that door locked on the planes!  Hey, if you can make it to the right flight gate, you are doing well.  

[Lady Lauri]

.........PIR: Look, f*cker, I want to land this thing NOW.
Ground: Come again, Captain? ............

Cute. So who'll be checking out thier next flights pilots:}?

Okay, read your not a pilot, so also not a mechanic, ground control?
Really, just tell me you never handle planes in Fla.!

We're teasing ya' Mark....we do that a lot, silly tx brain fog :}

LL

[Lady Lauri]

Hi. Agree with jmjm, really hope that job isn't control of 747's and if so, please don't ever pilot any flights with horse's and my 2 sons on it. J/K...sort of!
  As you can see, not much uplifting news on this. It truly comes and goes, for myself, many....it's here more than gone! Never really 'gone' either, just lighter.
No medical leave available? Perhaps push thru a few more weeks and see how you 'adapt' to these drugs being in you, get that VL test.
  Sorry we can't give much boost on this one.

LL

[alagirl]

I understand.  But in the end, for me. THE most important thing is my long term health and being around for my son and his future wife and children, and the rest of my family (I have a large extended family).  Certainly there have been MANY times on treatment when I have felt humiliated by my inability to do things (particularly work-related) the way I used to do them, with being too weak to function, having difficulty speaking or moving, etc.

Even now, I frequently have problems writing.  I misspell words, delete words entirely, or substitute the wrong word in sentences.  Very bizarre things that I've never done before.  Everyone knows I'm on chemo, they assume its for cancer, and I haven't given any colleagues details of my condition.  Most of them, I feel, think I'm probably terminal (I look it lately, I know - plus, I've been in the hospital a lot).

If you are having a lot of pain, don't assume its the treatment.  Its not normal really to have severe lower abdominal pain for any treatment related reason I can think of.  You should have it checked.  People tend to assume (doctors do this too) that all the things that happen on treatment are treatment related when some aren't.  

Many of the things I can think of that would be painful down there really do need to be checked out.  Inguinal hernia, intestinal issue or block, kidney / bladder infection or stones, appendix that's slowly going bad (its uncommon but I've heard of people who have an appendix that has low grade infection for a while before finally bursting - might be more common with a lower wbc, I don't know).  At any rate, I'd get this looked at.  


Anyway, take care.

[mark747]

At least with me I have to feel needed. As you know this medicine can take so much from you physically and emotionally. I am by nature a strong emotional person. This medicine can drastically change that. Feelings of self worth along with **********. you lose that since of bravado. This working thing not only keeps me so busy but satisfies these emotional needs that I tend to have from time to time. When I do kick this  disease  I will be a much stronger person in many ways. Did I mention I don't have time to feel the sx. hehe! Instead of writing a 2 page e-mail in ten minutes. Yes it may take 4-5 hours. That is 4-5 hours I am not realing from some pain that came out of nowhere in my lower abdominal area.

[alagirl]

I read your update and I think that's great.  That's one of the things I have done to enable myself to do some contracting, is to hire someone (someone sharp) who knows my field to help me with much of my footwork so I can try to stay at least minimally afloat financially.

[alagirl]

I work a job that requires quick decisions with millions of dollars at stake. Everybody at work is noticing this. Now is the time where I feel that a decision needs to be made whether to finish or? I would hate to lose this job that has given me and my family so much. Any suggestions?
----------------------------------------------------------------------
I completely understand.  And its true.  (You may want to ask your doc or a shrink for some adderall - that could help).  Here's the part I don't get though.  I too had a job.  Lots of $$$, nice house overlooking the lake, kid in college, etc.

Like you, I'm a genotype 1, but a 1b.  Worst genotype out there, us 1's.  The most recalcitrant to treatment.  Unlike you, I have the advantage of being an acute hepc patient.  I discovered my hepc status within weeks of being infected and it makes my treatment perhaps... more, well... it gives me more options with my treatment than you have.  And STILL, when it came to my job or my treatment, I walked away from the job with my family's blessing.  And it looks like we'll be able to keep the house, but I had their blessing to walk away from that too.  My son dropped out of his freshman year of college to help me through treatment, he'll go back this summer and double up through the summer.

Many feel that you can just treat "any time."  Go do your OWN research on google before you make the decision to tank your decision.  Don't listen to me, don't listen to them.  Go read the studies that have been done on your genotype and go read about what hepc does to the rest of your body if left untreated.  Go read what it does to your renal system, and your brain, sometimes far before it shows up in your liver.

Just do your research, and talk to specialists, really good hepatologist in the field, and ask them about the research - correspond with the actual people who did the studies if you want.  But do that before you make a decision.  That's my advice anyway.  There are tons of jobs out there.  I was just offered a better job than the one I left from someone who knows I'm on "some type" of chemo and won't be myself for another few months.

[mark747]

Update. I made a decision to continue working at this point. I have hired an assistant to travel with me. I also have an awesome secretary that I have empowered immensely. When I have major decisions to make, I always ask people around hypothetically questions. I ponder their response and make a decision. So far it has turned out ok. The sx have become almost unbeareable at times. However staying busy, I mean really busy, catching a late night flight, helps me through the tough times. I don't think I could stay home at this point and deal with this. I can't wait to get to a hotel sometimes and read the board. I have found solid advice here from people going throught the same thing. Maybe later I will be force into stepping down, however for the time being I have people that will let me know, if I start slipping. The Ceo of my company knows my situation and stated that I am harder on myself than anyone else. That helps that I have a supporting cast at work as well. Just wanted to post an update.

[sfbaygirl]

They were pretty funny!!  Glad you got a laugh. If we can't laugh about this stuff we have to cry.  Hope you are doing okay!

[mark747]

The pilot jokes were great. I had to pick myself off of the floor from laughing so hard. I never considered the screen name. That was from the military days. Guys I really needed that.

[glucklich]

Brian fog destroyed my ability to reason mathematically and make decisions. It also took my bravado away.
If oyu are lucky you can tell your boss and get the help you need, but the  bottom line for me was : wish as I might the lights just were not on.

[sfbaygirl]

Sorry for all the jokes at your expence. we just know that brain fog. Besides we like to joke about it, otherwise we would cry. It can be really bad.  I am sure glad you aren't a pilot! I had clear days and tried Provigil. When I had those clear days, I was a happy camper, but those other days I was a basket case. Provigal didn't help much.  Good luck with your job.

Linda

[mark747]

To clear the record, no I am not a pilot. I talked with my nurse last night and she is going to go over my blood work with me in the morning. I am praying something is out of whack. Thus the major fog! I hardly notice the sides from this poison by traveling almost daily. Staying busy seems to do the trick. Getting calls from our Corporate office about major decisions that were made and I don't remember the details. That my friends is scary. The good news is I don't have to make a decision today. I am going to give myself several weeks. I have taken all of the advise that was mentioned here and I will ponder on these. I will let you know the outcome. I DO want to overcome this disease, I guess the question is at what cost.
thanks

[wed1942]

Do you ever wonder if the "fog" is your ammonia level going up? Mine is elevated now (119 with 47 being the upper norm). I was asked by a dietician if I was getting confused. No more than my normal I think. I guess mine has gone up over so many years that I have compensated for it but maybe it's not just the meds. Just curious.

[jmjm530]

ONE HOUR FIVE SECONDS LATER

PIR: Come again? Clear that runway now or I'm going to give the tower a blue ice shower.
TOWER: Captain, we want you to just calm down, can you do that for us, huh.

ONE HOUR TEN SECONDS LATER

PIR: CALM DOWN...ARGGG.... Here comes the blue ice.
TOWER; Captain, can we please speak to the co-pilot...and btw that was a stewardess you dropped on us, not the blue ice.  

ONE HOUR FIFTEEN SECONDS LATER

TOWER: Put the Co-Captain on the line right away, this is an order.
PIR: First I will have to take off his duct tape and gag. He was starting to GET ON MY NERVES.

[FlGuy]

Jim you should add that it was a flight from New York to California and the plane was over Pennsylvania.

[jmjm530]

PIR: (Pilot on Riba)  Need permission to land.
Gound: Captain, please assume holding pattern.

FIVE MINUTES LATER

PIR: Look, how long is this going to take
Ground: Captain, please remain in holding pattern.

THIRTY MINUTES LATER
PIR: Can you hurry things up down there.
Ground: We're doing the best we can, Captain.

ONE HOUR LATER

PIR: Look, f*cker, I want to land this thing NOW.
Ground: Come again, Captain?

.................

[sfbaygirl]

Thanks Jim, why doesn't he fly your way!  I do hope he isn't a pilot. That wouldn't be good with brain fog. My brain fog was so bad sometimes I wouldn't drive. It would seem that a leave of absence would be the way to go, or cut your losses as Jim says and try again when the PI come out and tx is shorter.

[jmjm530]

I hope your screen name is not a clue as to your profession but if so, maybe a leave of absence or at least letting us know your work schedule might be helpful :)

But seriously, that's a tough spot you seem to be in, because as mentioned, brain fog -- as well as other side effects -- can remain throughout treatment, sometimes getting worse -- sometimes better -- but always unpredictable.

A medical leave of absence seems preferable to putting yourself in a position where they might end up penalizing or firing you because of bad performance.

As to actually stopping treatment, you're early enough in the game to cut losses -- but  a lot would depend on how much liver damage you have, i.e. how critical it was for you to treat in the first place. Also, if you can, you might want to get an early viral load test(s) now and at week 4 to see how you're responding. Something you also might factor into the decision.

BTW is it OK to fly to LAX next week :)

-- Jim

[geterdone]

So, 4c is one worse than the other and what about using both at the same time mental and physical? What is the difference in your humble opinion? Please help me understand your statement of an UP thing.

jasper

[Forseegood]

I probably shouldn't even be addressing this, but I've heard over and over that if you have a job where you don't have to be up all the time, it's better...My friend here, Kittyface, is also a real estate broker...that's an "up" gig I would imagine, and strenuous...carting clients to see places, keeping quick figures, being really ON...etc etc...but who knows, maybe you'll be able to do it, you might talk to Kittyface about it though...