Aa
Brain Fog - what it really means for your life survey
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.
-------------------------------------------------------------------------------------------------------------------------
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?
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.
-------------------------------------------------------------------------------------------------------------------------
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?
I'm sorry, what was your question????
You know things are changing when you find yourself in the bathroom going...."now why did I come in here??"
You find your glasses prescription you were supposed to fill last year still in your purse...unfilled...
and the one from 3 years ago...also unfilled..
but when your hubby walks in and your putting the KY on your face and the Oil of Olay elsewhere....you know then to abandon all hope..........
but seriously,
it can get better,
work on tx, ones own health, supplements, ammonia levels etc..
also get checked for true altheimers...there are some good meds now if that is part of ones dynamic
mb
You know things are changing when you find yourself in the bathroom going...."now why did I come in here??"
You find your glasses prescription you were supposed to fill last year still in your purse...unfilled...
and the one from 3 years ago...also unfilled..
but when your hubby walks in and your putting the KY on your face and the Oil of Olay elsewhere....you know then to abandon all hope..........
but seriously,
it can get better,
work on tx, ones own health, supplements, ammonia levels etc..
also get checked for true altheimers...there are some good meds now if that is part of ones dynamic
mb
Yes thanks scratchinghead. I have given outsourcing some thought. I didn't really want the expense and hassle of outsourcing. Some things are OK but others... phew better off doing it yourself.
My original plan was to cut back to maintaining systems that are already in place. Especially for the first few months. I also put in place a low income financial survival plan for a year. If I can't hit the ground running at the end of that year though, I will be in a lousy position. Before I started, I thought I would be able to get back up to speed a few months after finishing treatment. Now I am not sure. Lots of people seem to be saying they still have side effects for a long time afterwards. If that's not the case, I sure wish the lucky ones would start posting.
My original plan was to cut back to maintaining systems that are already in place. Especially for the first few months. I also put in place a low income financial survival plan for a year. If I can't hit the ground running at the end of that year though, I will be in a lousy position. Before I started, I thought I would be able to get back up to speed a few months after finishing treatment. Now I am not sure. Lots of people seem to be saying they still have side effects for a long time afterwards. If that's not the case, I sure wish the lucky ones would start posting.
truly speaking I am a relapser. It relapsesd twice so quickly that i think It is no reponse.Anyway, my viral load initially was 10 million and after 72 weeks it is back at 1 million. In between it was UND for many months.I am 47 Male
Hey. Thanks for that info.
For me I noticed several things:
1. A sudden inability to read from about the week. When I first really noticed it I was feeling quite upbeat because I felt well enough to try and read and work. I looked at the words, I could understand each one but I had troubling holding the meaning of the whole sentence in my head. At paragraph level I was completely lost. Reading ability has been coming and going a bit which makes me slightly hopeful.
2. A sudden inability to deal with symbolic things. It is hard to describe really. Prior to starting treatment I could map out a large number things in my head and consider them simultaneously. Now I can't. I relate to what you say about getting lost. When map reading in the forest a few weeks ago I had to look at the map all the time for every single turn, decision, marker etc. Before I was quite good at topographic visualization.
Can I ask you about your treatment? Was it successful? How long were you on it? What was your initial viral load?
For me I noticed several things:
1. A sudden inability to read from about the week. When I first really noticed it I was feeling quite upbeat because I felt well enough to try and read and work. I looked at the words, I could understand each one but I had troubling holding the meaning of the whole sentence in my head. At paragraph level I was completely lost. Reading ability has been coming and going a bit which makes me slightly hopeful.
2. A sudden inability to deal with symbolic things. It is hard to describe really. Prior to starting treatment I could map out a large number things in my head and consider them simultaneously. Now I can't. I relate to what you say about getting lost. When map reading in the forest a few weeks ago I had to look at the map all the time for every single turn, decision, marker etc. Before I was quite good at topographic visualization.
Can I ask you about your treatment? Was it successful? How long were you on it? What was your initial viral load?
It's really interesting to hear your experience. Fantastic tx improved things for you! I will be really pleased if that happens for me.
You said you were a non-responder. Do you mean that the treatment never reduced your viral load at any time? Can I ask you some questions?
-- What was your viral load before, during, after treatment?
-- What was your genotype?
-- How old are you?
-- How long did you have treatment?
You said you were a non-responder. Do you mean that the treatment never reduced your viral load at any time? Can I ask you some questions?
-- What was your viral load before, during, after treatment?
-- What was your genotype?
-- How old are you?
-- How long did you have treatment?
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?
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?
Thanks for your wisdom Trinity :) Sorry I took a while to respond. I really hope your blood counts stabilize.
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.
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.
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?
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.
Here something, not a lot:
http://tinyurl.com/3xxvmt
For hardcore queries there are many listservs that are pretty good. just trying to help.
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.
Five months off 48 week treatment and no improvement in cognitive abilities,yet. I still won't drive, or I'll get lost.
Albany
Now you know what a man feels like all the time, now add a second fogged brain and you got us pegged.
Harry
Albany
Now you know what a man feels like all the time, now add a second fogged brain and you got us pegged.
Harry
I work for a State University, The way i handled my tx was this:
As soon as i found out i was going to start, i let my immediate supervisor know and my department heads.
i explained everything about hep c that i knew. i also told them what side effects were expected. i kept them informed after docters appts. i took off when i could not work, and there were times it was often, i am only on week 20> Last week i was out the entire week from mouth sores. i explained to my employee about brain fog, i just kinda try and get through it. my job requires me to talk to freshman parents about the procedures and billing system of the university and i know there are times i have made no sense.
when i decide to treat my doc gave me the usual side effects. i have very little of the body aches/flu like symtoms. i have the riba rash/the rage/depression/ sores in my mouth/on sides of lips and alot of hair loss. i think all in all i would have treated had i known everything.
believe its very hard daily to go on. when you just want your life back. but alot people here have told me it goes by fast, and one day we will be done.
i hope this helps.
peace rita
As soon as i found out i was going to start, i let my immediate supervisor know and my department heads.
i explained everything about hep c that i knew. i also told them what side effects were expected. i kept them informed after docters appts. i took off when i could not work, and there were times it was often, i am only on week 20> Last week i was out the entire week from mouth sores. i explained to my employee about brain fog, i just kinda try and get through it. my job requires me to talk to freshman parents about the procedures and billing system of the university and i know there are times i have made no sense.
when i decide to treat my doc gave me the usual side effects. i have very little of the body aches/flu like symtoms. i have the riba rash/the rage/depression/ sores in my mouth/on sides of lips and alot of hair loss. i think all in all i would have treated had i known everything.
believe its very hard daily to go on. when you just want your life back. but alot people here have told me it goes by fast, and one day we will be done.
i hope this helps.
peace rita
"mood swings, depression, and suicidal ideation"
"impairment of memory, concentration, and other cognitive skills"
You're trying to separate and compartmentalize brain functions that are inextricably linked. A person doesn't wake up one day and say, "Hey, my cognitive skills are fine, I think I'll go x myself. My concentration is fine, but my moods are all over the place. My serotonin and endorphin levels are making me depressed, but no problems with my memory." There is a good reason why many treatment docs put their patients on SSRIs before starting tx. There is a good reason why I threw in the towel at 23 weeks even with good blood counts and a gastro who wanted me to do 48. I figured win, lose, or draw I didn't want to continue hammering my brain. I got lucky and SVRd.
"impairment of memory, concentration, and other cognitive skills"
You're trying to separate and compartmentalize brain functions that are inextricably linked. A person doesn't wake up one day and say, "Hey, my cognitive skills are fine, I think I'll go x myself. My concentration is fine, but my moods are all over the place. My serotonin and endorphin levels are making me depressed, but no problems with my memory." There is a good reason why many treatment docs put their patients on SSRIs before starting tx. There is a good reason why I threw in the towel at 23 weeks even with good blood counts and a gastro who wanted me to do 48. I figured win, lose, or draw I didn't want to continue hammering my brain. I got lucky and SVRd.
Platelets are dropping - started out at 137 which is on the low side to begin with and as of last week 88. ANC (white blood) was down to 600 but bumped back up to 700 as of this Monday. Doc reduced peg dosage to 135 last shot. I'm on my 8th week and a reduction in peg right now lessens my chance for a 2 lg drop by 12 wks and SVR for that matter. I'm trying to get a rescue drug called neupogen (raises WBC) but it's about $400 a shot and I don't have rx coverage so could be a problem. If ANC goes below 500 he'll pull me off. Damned if I do and damned if I don't. I'm a geno 1A so tougher to treat but I just got to hope for the best. Sleep is something I miss terribly. I was never a sound sleeper but now if I get 3-4 good hrs I consider myself very lucky. I've stopped trying to be super woman and concentrate on the things I have to do like work and eat. Everything else is secondary. My hubby is not well so having to deal with his issues too. It's one day at a time, some days better than others. Lack of sleep, fever, fatigue, low blood counts all contribute to the brain fog but as we are all faced with these challanges we just hope there is enough inner strength to prevail. I want this cure more than anything or should I say I want to be able to know I gave it my best - regardless of the outcome. You're going to be fine - just keep the attitude as positive as you can and I'll bet as you continue down the tx road things will become easier.
Trinity
Trinity
I am 10 weeks post tx. My head is kinda coming back. Hubby now knows to tell me to write things down cause I don't really remember like I used to :-( He even had an account friend come in and help get my checking acct caught up, I closed 3 of them cause I just couldn't keep up. I write lots of stuff down and look at it the next day and don't remember writing it, lots of times with others I just go along with conversations until I remember the whole story most times it comes to me.
Denise
Denise
Your Brain Fog experience sounds similar to mine. The juggling is hard. If you were busy before on 7-days a week, trying to do it all in 2-3 good days just sucks. Have you finished treatment now? Sounds like it. Is your head coming back? It would sure be nice to hear from someone who can say that!
How long have you been on treatment? Which blood numbers are tanking? I am waiting for the chance to see my next results. The research I have seen suggests that my white blood counts may have stabilised by now. It seems that they generally drop for 4-weeks then don't change too much until treatment ceases after which they return to normal (usually). I wish the best for you Trinity. Thanks for sharing.
We are also self employed, he goes out and does the physical labor and I have (for 16 years) been the bookkeeper, payroll, billing, invoicing, tax payer, bank person, whatever. I was able to handle payroll and some billing. But to be honest after 16 years of juggling money, robbing peter to pay paul & the whole self employed juggling act..I have been telling him that I don't know how much longer I can handle the pressure for a few years. After I started tx I just could not do what I had been doing, I didn;t balance 5 checking accounts, It was a bad year for landscaping so the income wasn't really there, I didn't file my monthly taxes let alone the quarterys. I barely kept the bills paid, the lack of money plus dealing with the juggling of the money just got to be too much.. On my 2 or 3 good days a week there was so much other stuff to do like house work (hubby wants the house spotless, always has) dishes, grocery store, pay some bills, and whatever else.....so in the end my "job" suffered but I am catching up now. I would try to balance a checking acct and end up so out of balance I just closed the puter down.
So in a few other posts I have made where I said I didn't work it was kinda true, I don't work out of the house, but I have my share to do here and I did what I could. I also would like to know how other people handled the "juggling"
Denise
So in a few other posts I have made where I said I didn't work it was kinda true, I don't work out of the house, but I have my share to do here and I did what I could. I also would like to know how other people handled the "juggling"
Denise
Thanks for sharing your perspective. I can understand your approach, it sounds pretty good not having to worry about sides that might not happen. Since I obsess about having to support myself, I can't not prepare.
It's good information to know that fever and tiredness are affecting the severity of your Brain Fog. I have been trying to do all I can to improve my sleep patterns. The drugs stopped me from staying asleep for more than an hour or two at a time for the first 6 weeks. Even if I stay in bed longer to try and compensate, how can I get REM sleep under those conditions? It makes sense for sleep quality to be a contributing factor for Brain Fog.
The jury may be still out on the long-term effects of various types of sleep deprivation but my money is on that being very damaging. Certainly I wonder if it causes some of the psychosis, depression, moodiness that many people experience. Sleep deprivation doesn't seem to be the whole story though. I want more, more, more, information.
There was a very interesting TV documentary years ago in Japan about a man whose ability to transfer information from short- to long-term memory was destroyed by a hospital that failed to give him nutrients in his drip after a routine stomach operation. It damaged a part of his brain. Very interesting story. He could no longer recognise his children's faces after they grew up. There are lots of things that could be going on. If we know more maybe we could do something about it.
My sleep improvement measures: I try to eat at least 4-hours before going to bed, take the Ribavirin as early as possible. I use hypnosis. I try to make sure that although I am warm enough, the room is reasonably cool. Generally I am trying to get as much sleep as I can. More than usual. I don't drink it often but Sleepytime tea helps me stay asleep a bit longer. I am not sure if the tea has any negative effects on the drugs but I will try to find out. It's hard to imagine that the tea would have worse contraindications than a strong sleeping tablet.
It's good information to know that fever and tiredness are affecting the severity of your Brain Fog. I have been trying to do all I can to improve my sleep patterns. The drugs stopped me from staying asleep for more than an hour or two at a time for the first 6 weeks. Even if I stay in bed longer to try and compensate, how can I get REM sleep under those conditions? It makes sense for sleep quality to be a contributing factor for Brain Fog.
The jury may be still out on the long-term effects of various types of sleep deprivation but my money is on that being very damaging. Certainly I wonder if it causes some of the psychosis, depression, moodiness that many people experience. Sleep deprivation doesn't seem to be the whole story though. I want more, more, more, information.
There was a very interesting TV documentary years ago in Japan about a man whose ability to transfer information from short- to long-term memory was destroyed by a hospital that failed to give him nutrients in his drip after a routine stomach operation. It damaged a part of his brain. Very interesting story. He could no longer recognise his children's faces after they grew up. There are lots of things that could be going on. If we know more maybe we could do something about it.
My sleep improvement measures: I try to eat at least 4-hours before going to bed, take the Ribavirin as early as possible. I use hypnosis. I try to make sure that although I am warm enough, the room is reasonably cool. Generally I am trying to get as much sleep as I can. More than usual. I don't drink it often but Sleepytime tea helps me stay asleep a bit longer. I am not sure if the tea has any negative effects on the drugs but I will try to find out. It's hard to imagine that the tea would have worse contraindications than a strong sleeping tablet.
I agree that the potential for mood swings, depression, and suicidal ideation are not downplayed. I regard "Brain Fog" is something entirely different.
The possibility of _permanent_ impairment of memory, concentration, and other cognitive skills was not mentioned in any documentation that I read. It was not mentioned by my specialist either. The fact that I could be unable to work effectively due to this side-effect was never mentioned.
I found out afterwards that cognitive skills commonly do not return to pre-treatment levels. How much any person cares about mental acuity certainly depends on their entire state of health at a given moment. If you have very serious liver disease already, then losing career and income would be much less of a priority than staying alive. I would never judge that to be a poor decision. I just think that there should be a lot more information about the subject so that people can make informed choices. There are many people who are still reasonably healthy being encouraged to undergo treatment. They are told that starting early increases the chances of SVR. I think they should know as much as possible about "Brain Fog".
The possibility of _permanent_ impairment of memory, concentration, and other cognitive skills was not mentioned in any documentation that I read. It was not mentioned by my specialist either. The fact that I could be unable to work effectively due to this side-effect was never mentioned.
I found out afterwards that cognitive skills commonly do not return to pre-treatment levels. How much any person cares about mental acuity certainly depends on their entire state of health at a given moment. If you have very serious liver disease already, then losing career and income would be much less of a priority than staying alive. I would never judge that to be a poor decision. I just think that there should be a lot more information about the subject so that people can make informed choices. There are many people who are still reasonably healthy being encouraged to undergo treatment. They are told that starting early increases the chances of SVR. I think they should know as much as possible about "Brain Fog".
All IFN I've taken comes with a prominent 'black box' warning about the potential psych effects. Doesn't seem "downplayed" to me.
The sides of this treatment are very unpleasant. I can't disagree with you there. However, even if I had known prior to tx EXACTLY how my brain and body were going to react from this medication I do not think I would have approached it any differently. I had the basic information which was provided my by doctor and the drug info sheets but each week brought different sx which I deal with on an "as need" basis. This works better for me because I don't have the anxiety associated with anticipating the worst if you know what I mean. The brain fog is bad and it gets worse if I become overly tired or running a low grade fever etc. It's during these times I have that talk with myself and literally force myself to concentrate, particulary at work. It's a constant battle inside both physically and mentally but it's the only way I know how to cope and best deal with the sx. I had to treat because of advanced liver damage, stage 3 but because my blood numbers are starting to tank I may get pulled from tx. The thought of having to stop tx is much more devastating than any of the sx thus far. So I guess to sum it up, sx are different with everyone and we all have our own way of dealing with it. Thanks for listening.
Trinity
Trinity
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