Brain Fog - what it really means for your life survey

[Odin999]

I have been on Pegintron for 7 weeks now. About to have injection number 8 today. The post-injection physical symptoms, awful for me at the beginning, seem to have moderated to a manageable level now (just nasty instead of bone-crunching). I have genotype 1, hence a 48-week course has been prescribed. I am trying to eat well, exercise, take Interferon and Ribavirin as prescribed and so on. Until recently, I have barely taken any medications at all, not even painkillers or antibiotics. I hate taking medications of any description.

I am single with no relatives, no partner, and few assets. I can manage another 6-8 months of this, but it will clean me out financially if I can't work at all. I have to support myself entirely. I need to earn a decent amount to service my mortgage, and try to land on my feet when I reach retirement age. Haven't got that many years left.

I am turning myself inside out worrying about the memory and concentration problems that I now experience. I can barely work, even on days when I feel reasonable physically. I am terrorized by the thought that I may never regain pre-treatment levels of mental acuity. I feel totally useless at the moment.

I am angry at the specialist and pharmaceutical companies who play down the significance of this particular side-effect. I don't mean to suggest that other side effects aren't worth paying attention to, but this one affects your ability to cope with everything. We are talking about the computer, the central processing unit, the brain. If you knew from the beginning that most of the chips were going to be taken out as a result of the treatment, you would pay attention and take radical steps to deal with it.

Brain Fog described as “mild mental confusion, memory loss, and/or lack of concentration and alertness” sounds manageable. It sounds, well, mild.

It is completely different if you have practical examples:
-- I was sacked from my job because I couldn't keep up.
-- My income has halved because everything takes longer.
-- I walk from one room to another and by the time I arrive I can't remember why I went there.
-- I look at words on a page in a book. I see them, and I understand the meaning of each word, but as my eyes scan across, each word disappears as soon as I look at the next one. To quote from Meki's brilliant description of Brain Fog in another forum - "I don't have the story".
-- I have an almost childlike inability to follow through on anything (Quote from New York Times Chemotherapy Fog article 29 April 2007).

For me this Brain Fog is by far the most debilitating and worrying problem of all, and it will have the most significant long-term effect on my quality of life. Even with the true picture, I think I would have chosen to risk treatment. After all, without treatment, you are ultimately on a path toward cognitive impairment. The point is that I would have prepared differently. Now I want to know what is likely to happen from here on.

I would really like to hear from other people what their experiences have been over the course of the treatment. I imagine quite a few people would want to know this too. I know everybody is different but there are common themes. We aren't getting decent information from pharmaceutical companies and specialists on this. Have to gather it ourselves.

I would like to do a survey on the prevalence and severity of Brain Fog over the course of treatment. I will be my own first respondent. If anyone out there would respond and share their details I would really appreciate it. To make it easy, you can copy the survey into a message reply.

If this survey has enough useful responses I will see if I can spread it around a bit, perhaps get some media interest, see if can get it included in any medical papers.

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BRAIN FOG SURVEY:
1. Basics:
-- Genotype
-- Liver condition at beginning of treatment
-- Treatment details: e.g. Pegintron Combination Therapy, week 7/48, dose details
-- Age
-- Male/Female
-- Any other basic information you consider important

2. When did you first start to experience Brain Fog?

3. Did the level of Brain Fog stay the same throughout treatment? If it varied, how much and when?

During treatment:
Please rate on a scale of 1=bad/incapable - 10=good/capable
-- 0 weeks =
-- 2 weeks =
-- 4 weeks =
-- 12 weeks =
-- 24 weeks =
-- 48 weeks =
-- 72 weeks =

Post Treatment:
If you suffered from Brain Fog, did you regain mental capacity after stopping treatment? How long did it take?

4. Prior to starting treatment did you engage in activities which you think required multitasking, concentration and memory? If you don't mind saying so, what type of activities were they?

5. What effect do you think Brain Fog has had on your quality of life?

6. Are you taking antidepressants? What type? Are they helping? In what way?

7. Do you exercise? What do you do?

8. Are you aware of anything other than HCV medications, such as high Ammonia levels in your blood, which may be contributing to Brain Fog? Please give details if you can.

9. Was/is the prospect of Brain Fog during treatment very important to you for making the decision to begin or continue treatment?

10. Would you like to offer a comment about Brain Fog for people considering or currently undergoing treatment?

[Odin999]

Thanks for telling me about your situation. It is great that you were able to inform key people at your work place. If I told some of my major clients that I was suffering from Brain Fog they would panic, ask commercial lawyers how to get out of our service contracts and head for the hills as fast as possible.

There is too little public awareness of this disease in my country. I don't know what it is like elsewhere.I ask what are the drivers for improving treatment? What drives the focus of research? We need to be vocal to get research moving in the directions that WE care about and that will help us most. The fact that few people feel like they can risk talking publicly about the illness doesn't help at all. We don't have much of a voice if we don't speak out. We can't vote with our feet if we don't have alternatives. I am thinking very hard about whether or not to go public. I think I will at some point.

I ask, what are the incentives to develop a cheap, fast acting cure for HCV? Governments might want one because it cuts their social welfare costs and improves productivity. I guess I am getting off original topic here so I will stop. I really want to know more about the long-term prognosis for this Brain Fog thing at the moment.

If you are up to week 20-something then you must have had your 12-week test. Did you have a 4-week test? May I ask you about your viral load history?

[Odin999]

Thanks for your wisdom Trinity :)  Sorry I took a while to respond. I really hope your blood counts stabilize.

[Odin999]

Thank you for sharing that. Can I ask you how long you have been off treatment and what your starting viral load was?

I really understand your reasons for deciding to go off treatment. I will be assessing my own position in about another month when I get my 12-week viral load test results. Personally, I have a tendency to try and tough things out through sheer force of will. Sometimes it is better to make a strategic withdrawal, sometimes not. It has to be a very touchy subject for us all. Going through this treatment is a massive investment on all levels. Thank goodness you have a SVR.

[dranurag]

I feel I have had brain fog for many years before tx and it seems to have improved with tx. I did not have any depression or suicidal tendency during tx which my doc had warned me and my wife about . I continued to work and my work  involves hours on end of concentration and attention. I have become forgetful though--aging?I was a chart topper student and had first rank among 60000 candidatees in one particular entrance examination in my early life and still can solve maths sums better that my son.I can fall asleep very easily before one can count 100. It was three earlier also and I took it as a blessing.Now I dose off while listening to a boring friend very easily.Is it ammonia?

[scratchinghead]

How about outsourcing your difficult stuff? They can be pretty cheap and pretty fast. Lots of web designers.
Here something, not a lot:
http://tinyurl.com/3xxvmt

For hardcore queries there are many listservs that are pretty good. just trying to help.

[scratchinghead]

I haven't started treatment yet. Holding off for the very reasons that you are complaining about. Once I get our new system up and running I'm hoping I can just fix minor things that I've already done the thinking about. You all are starting to scare me.