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  #1  
Old 08-26-09, 10:49 PM
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Chemo-Brain and ADD - Diagnosis predicament

So I finally got a call from the doctor with my diagnosis. I went there so sure I had ADD.

They said I infact do not have ADD. The reason they gave was that I wasnt really figiting, and some other tests that I shouldve scored worse on I scored within average range. (Superior-very high on non-ADD related tests)

The doc said I was experiencing "Chemo Brain" from chemotherapy I had 8-9 years ago.

So I've been reading about this "Chemo-brain" and it turns out it has ALOT of similar symptoms. Attention, memory, concentration problems, and fatigue... but i guess it lacks the can't sit still symptom?


Anyway, I still think I have ADD, because
1. I had a really light dose of chemo

2. It doesnt explain all my genetic suspicions
- my brother absolutely has ADD, got tested 10 years ago, but was not diagnosed because...it was 10 years ago.
- My dad fits a lot of descriptions I've read for older ADDers. He dropped out of college, was an alcoholic at one point, now hes a rigid workoholic, with severe hoarding issues (you wouldn't believe how much random **** he has in storage... not really an issue, he has space for it, but its kinda crazy) and hes definetly socially different than my mom, and most people in general.
-than theres also my G-ma, and my cousin... so theres def something genetic here.

3. It doesnt explain my pre-chemotherapy observations
Not doing HW assignments, not having many friends, somewhat odd sexual exploration... goes way back


So yeah, bit of a rant. Luckily, this Chemo-Brain they said I have, has quite similiar treatment options, but I don't think any of them are 'official' and i dont think the diagnosis is officially recognized.

I'm going to see a psychiatrist and see what the say, I'm really hoping for medication because I really think my quality of life is impacted here... a little push could go a really long way.
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Old 08-26-09, 11:06 PM
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Re: Chemo-Brain and ADD - Diagnosis predicament

Let me ask you a question. But before I do, you should know this: I've have multiple bad experiences with drugs and shrinks in the past, and have absolutely no faith in a getting "cured" by a magic bullet (er, pill). I'm all for a behavioral-based approach to change.

So to my question: would a magic pill fix your habits? If you're tired, would it magically get you to bed earlier? If you have poor attention and struggle with getting things done, would you magically get better planning skills as a result of taking this magic drug?

I've discovered a few things: first, drugs do work (sometimes). But, they don't fix your habits. Also, they have side effects (no need to elaborate, I'm sure you've enjoyed many with your chemo!). And, mostly they just wear off after awhile. So...what to do?

For the past couple of years I've been taking a more hands-on approach to "fixing" myself, and now with having learned about ADHD-I this past May, I've really been on a swing to learn everything I can for dealing with this rotten, stupid condition (although there are aspects that I LOVE, like the hyperfocus and creativity!).

So, drumroll...

What I've basically learned is that by controlling your body (sleep, diet, exercise) and changing your habits and situation, you can get waaaaaay better results than you can with drugs. This is just a general statement - there ARE people who REQUIRE medication - my friend's kid HAS to have his Ritalin or he just can't function, period. So you gotta evaluate where you are.

But ultimately, I think a lot of it is just taking the ADD approach to life: realizing that you've got to be strict with yourself about your health and your routine, and working hard to make that happen ever day. The fact is, we have a different set of problems (and perks) that other people don't have, so we need to approach life a different way than most other people do. It's not anything crazy or hard or weird, it's just different than what we all learned growing up.

Like, people would always say to me, "well just do it". That SURE doesn't work for me! But if I can find a way to motivate myself about doing the task, then I just have to hold on for the ride once my hyperfocus kicks in! Little tricks and habits and stuff like that have really helped me the most. Just speaking from my own, personal experience.

What I guess I'm trying to say is, don't necessarily let the doctor slap drugs on you and convince you that it's the only way to go. Personally I'd suggest drugs as a last resort - it's an easy way out, but yuck - side effects, wears off, blah blah blah. Take some Adderal and get focused, but lose your creativity. Take some Prozac to help with your depression, and then enjoy never having to sleep again!

If you're interested in this approach, post some more about your problems. What kind of stuff are you struggling with? Why are you struggling with it - hard time going to bed? Difficult time feeling motivated to do your laundry? Having problems committing to an exercise plan? Don't be afraid to share, we all understand you here
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Old 08-27-09, 03:36 AM
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Re: Chemo-Brain and ADD - Diagnosis predicament

I have motivation issues, Fatigue, procrastination, concentration, memory problems, an addictive personality, and also i am socially avoidant... my social skills are lacking, and I guess my confidence is low too. I also rarely exercise unless it is doing something I am interested in... like mountain biking

I've been reading about Modafinil.... its much safer than adderall, and not as strong. Its used for narcolepsy, but has been used for ADD, and 'chemo-brain'. Theres several erowid posts about it being life changing in areas I am having trouble with.

I have also read that it can be addictive, even though its advertised as non-addictive. so I'm a bit leary there.
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Old 08-27-09, 10:26 PM
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Re: Chemo-Brain and ADD - Diagnosis predicament

Quote:
Originally Posted by Bobthebuilder View Post
So I finally got a call from the doctor with my diagnosis. I went there so sure I had ADD.

They said I infact do not have ADD. The reason they gave was that I wasnt really figiting, and some other tests that I shouldve scored worse on I scored within average range. (Superior-very high on non-ADD related tests)

The doc said I was experiencing "Chemo Brain" from chemotherapy I had 8-9 years ago.


Anyway, I still think I have ADD, because
1. I had a really light dose of chemo

2. It doesnt explain all my genetic suspicions
- my brother absolutely has ADD, got tested 10 years ago, but was not diagnosed because...it was 10 years ago.
- My dad fits a lot of descriptions I've read for older ADDers. He dropped out of college, was an alcoholic at one point, now hes a rigid workoholic, with severe hoarding issues (you wouldn't believe how much random **** he has in storage... not really an issue, he has space for it, but its kinda crazy) and hes definetly socially different than my mom, and most people in general.
-than theres also my G-ma, and my cousin... so theres def something genetic here.

3. It doesnt explain my pre-chemotherapy observations
Not doing HW assignments, not having many friends, somewhat odd sexual exploration... goes way back
Contrary to what your doctor may have said, there are no tests that show whether or not you have ADHD. The following are just some of the reasons that someone may do well on a particular type of test in spite of having ADHD:
  • there are no tests that have been scientifically researched to "prove" or "disprove" ADHD
  • those with superior intelligence can perform better on some tests in spite of their ADHD
  • novelty or interest can help someone with ADHD focus
  • anxiety, worry and/or fear can cause some people with ADHD to focus better
ADHD is diagnosed according to the standards of the DSM-IV (Diagnostic Statistical Manual of Mental Disorders) used by psychiatry. It requires interviewing the individual and/or parents, teachers, etc and going over their history of symptoms. The symptoms, should have been apparent before the age of 7 (although that age is likely to be changed to account for those whose symptoms were not apparent until middle or high school) and the symptoms have been ongoing and not just for a few years. One must meet at least 6 of the 9 inattentive symptoms for inattentive ADHD, or 6 of the 9 hyperactive/impulsive symptoms for the hyperactive type. Fidgeting is only one symptom and is not required in order to have the diagnosis. And should you have the inattentive type, fidgeting isn't even listed as an inattentive symptom.

The DSM-IV does not require any testing for a diagnosis of ADHD!!

Unfortunately, some doctors have their own "litmus" test for ADHD which is not based on the DSM-IV, but on their own beliefs of what ADHD should look like.

It is important to find someone who is knowledgeable and experienced in diagnosing ADHD. Even some psychiatrists are not knowledgeable regarding ADHD, especially in adults, females, or those with the inattentive type.
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Old 08-28-09, 12:24 PM
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Re: Chemo-Brain and ADD - Diagnosis predicament

Quote:
Originally Posted by Bobthebuilder View Post
I have motivation issues, Fatigue, procrastination, concentration, memory problems, an addictive personality, and also i am socially avoidant... my social skills are lacking, and I guess my confidence is low too. I also rarely exercise unless it is doing something I am interested in... like mountain biking

I've been reading about Modafinil.... its much safer than adderall, and not as strong. Its used for narcolepsy, but has been used for ADD, and 'chemo-brain'. Theres several erowid posts about it being life changing in areas I am having trouble with.

I have also read that it can be addictive, even though its advertised as non-addictive. so I'm a bit leary there.
Yeah dude, that sounds like classic ADHD to me.

Basically, I define ADHD as a mixed bag of problems that prevent you from getting your stuff done and enjoying life:

Fatigue? Check.
Procrastination? Check.
Concentration problems? Check.
Memory problems? Check.
Addictive personality? Check.
Socially avoidant? Check.
Low self-esteem? Check.

Welcome home, buddy
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Old 08-28-09, 03:17 PM
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Re: Chemo-Brain and ADD - Diagnosis predicament

thanks

but descriptions of chemo-brain are practically the same as ADD.. besides the addictive personality, and avoidance... but thats a direct effect of the memory, fatigue, concentration/focusing problems.

so I think i got enough out of the neurophyscologist visit to pursue medication, or therapy. Even if I don't have ADD... 9 years of this mental fog is really making an impact on my life
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Old 08-28-09, 05:51 PM
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Re: Chemo-Brain and ADD - Diagnosis predicament

Quote:
Originally Posted by Bobthebuilder View Post
thanks

but descriptions of chemo-brain are practically the same as ADD.. besides the addictive personality, and avoidance... but thats a direct effect of the memory, fatigue, concentration/focusing problems.

so I think i got enough out of the neurophyscologist visit to pursue medication, or therapy. Even if I don't have ADD... 9 years of this mental fog is really making an impact on my life
Yeah definitely, now that you've started to figure out what your symptoms are, you can get to work treating it. Learning what your problem is is always the first most difficult step. I didn't find out until a few months ago that I had ADHD-I, or that ADHD-I even existed. Now I know, and I'm learning everything I can about it and trying a bunch of different things to manage it. So good luck to you!
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Old 08-29-09, 03:37 AM
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Re: Chemo-Brain and ADD - Diagnosis predicament

Modafinil is good. I do think it is a bit addictive. It's not a high, but something different. Kind of like walking outside on a Saturday morning on a warm, sunny day with a cup of coffee after a great night of sleep.

Anyways, I never heard of chemo brain before so I can't really comment on its similarity to ADD. Your symptoms, though, are similar to my own.
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Old 08-29-09, 04:03 AM
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Re: Chemo-Brain and ADD - Diagnosis predicament

I would say if the symptoms were not present until after the chemo treatments then the symptoms are due to the chemo just as the doctor said - if they are life long symptoms that have remained basically the same intensity just maybe expressed them selves differently then there may be a reason to seek a second opinion.

ADD like I have ADD {genetic} is some thing one is born with - not some thing that arises suddenly.
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Old 08-29-09, 04:25 AM
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Re: Chemo-Brain and ADD - Diagnosis predicament

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Originally Posted by meadd823 View Post
I would say if the symptoms were not present until after the chemo treatments then the symptoms are due to the chemo just as the doctor said - if they are life long symptoms that have remained basically the same intensity just maybe expressed them selves differently then there may be a reason to seek a second opinion.

ADD like I have ADD {genetic} is some thing one is born with - not some thing that arises suddenly.
Yes, good point. Also, your health issue may have led to depression. I had a health issue about 12 years ago that I thought caused about 5 years of problems in my life because of depression and anxiety. It was 4 years ago that that while I did have those issues, ADD had been there from childhood and was a bigger issue.
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Old 08-29-09, 06:48 AM
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Re: Chemo-Brain and ADD - Diagnosis predicament

Barkley stated once that if you met the criteria for ADHD, then you are ADHD.

There are a number of causes for ADHD but they can be broken into two categories. First, and the most common is genetic. You inherit the genes that result in ADHD symptoms.

The second stems from external causes. Most are prenatal exposure to substances such as lead or alcohol. Some are post natal causes which can include brain trauma and Chemotherapy as known causes of onset of ADHD symptoms.

There is a mild disagreement among professionals on this diagnostic point. Take head trauma resulting in ADHD symptoms for example. Is the correct diagnosis ADHD according to Barkley, is it better diagnosed with a diagnosis relating to the Traumatic Brain Injury or should you give it both.

I am still thinking about this one. I tend to lean toward Barkley but can see the weight of the counter arguments also.

Interesting philosophical issue.

Oh yes, as ADDMagnet said, there are no tests that are currently considered valid for diagnosing ADHD.

You can refer to this transcript of a
Barkley workshop. The part on diagnosis begins on page 2.
http://www.greatschools.net/cgi-bin/showarticle/2054

Good luck

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Old 08-29-09, 11:40 AM
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Re: Chemo-Brain and ADD - Diagnosis predicament

fyi,

Chemotherapy patients with leukemia often "acquire" ADHD from the medication.

One of many reference sources is :


http://www.greatschools.net/pdfs/2200_7-barktran.pdf?


A person can "acquire" ADHD at any point in life.

Approximately 20% are considered to be "acquired."

The 2 main sources are pre & post natal brain damage.

The #1 post natal brain damage cause of ADHD is Traumatic Brain Injury (TBI).

The Pediatric Neurologist and at least one of the adult Neurologist's in this area of the

Upper Midwest, use ADHD medication (s) to help TBI patient's brains heal.

These are old (and well established) data.

Hope this helps and good luck.

tc

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Old 08-30-09, 08:11 PM
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Re: Chemo-Brain and ADD - Diagnosis predicament

Quote:
Originally Posted by meadd823 View Post
I would say if the symptoms were not present until after the chemo treatments then the symptoms are due to the chemo just as the doctor said - if they are life long symptoms that have remained basically the same intensity just maybe expressed them selves differently then there may be a reason to seek a second opinion.

ADD like I have ADD {genetic} is some thing one is born with - not some thing that arises suddenly.
See theres the problem. I have no clue as to what i was like before chemo. I didnt know what ADD-I was, and I didnt know anything was wrong with me until last year.

But like I said, Before chemo... i think the laziness has always been here... and this sense of constantly underachieving. Also social ackwardness, sexual exploration, and the obvious (to me) genetic connection. I'm practically my Dad except a bit more lazy, less motivated.. and we have computers now . smoked pot instead of drinking alcohol... and I wouldve dropped out of college (as he did) if I didnt read about ADD.
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Old 09-07-09, 05:32 PM
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Thumbs up Re: Chemo-Brain and ADD - Diagnosis predicament

Wow. Thank you for starting this thread, Bob.
I've spent about a decade attributing various problems I've had to a combination of sleep deprivation effects (from long-untreated Sleep Apnea), effects from Depression, and...wait for it..."Chemo-Brain".
The interesting thing about these various disorders is that the effects
from them can all be more-or-less similar. If I feel fatigued, for example,
it could be from any one of them, or a combination of all three!

Now, I heard about "Chemo-Brain" from the people in my cancer support group, and I will admit that I was rather annoyed that no medical professional had ever mentioned it to me. I was further irritated to discover that a large percentage of the physicians I talked to about it
treated it as if I said I'd ridden a pegasus to the appointment. To them
it was an unsubstantiated thing that some patients believed in, that was
like an "urban legend". I think maybe it was only beginning to be recognized at that point, and information on it was not yet widely deseminated. But I was amazed to read your post that your doctor told you it was what you had.

I researched it on my own, and learned a little about it, but never heard anything about a treatment other than waiting for it to go away over time. Well, I was pronounced "in remission" in '94, and its never completely 'gone away' as far as I can tell...but then theres the frustrating fact that I can't be sure how much of what I experience might be tied to other conditions. I think its better than it used to be...but I can't be sure. And while I know that I'm nowhere near as sharp mentally as I used to be, the fog that is my memory prevents me from knowing exactly how I used to be pre-cancer. I simply can't reliably remember.
But I know I was different...clearer and quicker thinking, with more energy.

While I found out about "chemo brain" independent of medical professionals, and tried to learn about it on my own, it was the exact
opposite with ADHD. I always disregarded it as a possibility because to me, it was synonymous with "hyper-activity". Since being diagnosed, I've read and read about it, and recognized that it explains so many things I struggled with my whole life, that I always believed were unrelated to one another.

I half-grinned when I read that you were told you didn't have it, in part, because you weren't "fidgetting". I guess I do sometimes "fidget" a bit, like tap my feet or move my knees back and forth, but most of the traits that would be considered "hyper" are totally absent in me. An absence of energy is more typical! When I was first diagnosed as ADHD, I told a friend that a rotting log was more hyper than I was...that was before I understood what it meant to be ADHD-Inattentive. Basically, what you should remember, is that as others have said, no single symptom defines the condition. It will present differently in different people, and you don't have to have the whole list in order to qualify.

What I've been realizing recently is that since so many of the symptoms of "chemo-brain" are similar to ADHD, then what will happen if you suddenly find yourself with both? Well, it seems obvious to me that the severity of the symptoms would increase, possibly to a debilitating degree, certainly enough that previously undiagnosed ADHD may at last be noticed as answers are sought. But they are affecting you in tandem, and "fixing" one or the other will not solve the problem. Its hard, and I sympathize.

I am curious about a couple of other things that you mentioned, in the context of them being typical of ADHD, that I either can identify with, or hadn't heard about. You spoke of "hoarding". I'm a "collector" as friends and family have put it, and while I'm much better than I used to be, I still drive my wife nuts. Is that an ADHD trait?

I know alot of ADHD people have addictive personalities, and I think I do.
My opinion is that this comes as a result of using the "altered state of consciousness" typical of any addictive behavior as an escape from the difficulties of their daily lives. What do you think about this, and if you don't mind my asking, what makes you feel this applies to you?

Again, if you don't feel comfortable answering, you don't have to - or you can send me a PM, but I was curious about your remark about "sexual exploration". I wasn't aware that there were sexual behaviors that were seen as common symptoms of ADHD, beyond the fact that an ADDer might develop a relationship with sexuality that was escapist or addictive. I just read something in a book on ADD that gave me a very different outlook on what this might be, and changed my view of my own behavior.

Lastly,
Quote:
Originally Posted by mctavish23 View Post
fyi,
Chemotherapy patients with leukemia often "acquire" ADHD from the medication.
Mctavish, I can't thank you enough for posting this. My eyes welled up when I read those words. I haven't read the article yet, but I'm very interested in doing so. You see, the form of cancer that gave me my "chemo-brain" was Acute Mylogenous Leukemia.
I will be researching this in detail, and am very grateful for the lead.
If my treatments did "give me ADHD" or even if they just enhanced existing symptoms (since I think I did have it most of my life) I gladly accept that price over the alternative of a slow and painful death.

I hope this thread is helpful to anyone else who has dealt with cancer,
chemotherapy, and ADHD. Hang in there.
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Old 09-08-09, 10:04 PM
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Re: Chemo-Brain and ADD - Diagnosis predicament

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Originally Posted by Blood-Phoenix View Post
I was further irritated to discover that a large percentage of the physicians I talked to about it
treated it as if I said I'd ridden a pegasus to the appointment. To them
it was an unsubstantiated thing that some patients believed in, that was
like an "urban legend".
I saw a psyciatrist today and thats exactly what he did. I told him what my doctors in NY told me, what I have trouble with and he handed me a bottle of strattera and sent me on my way. He didnt seem to know anything about this "chemo-brain"
I also told him that before my chemo, I was young, and I dont really have much memory of what I was like.


Quote:
Originally Posted by Blood-Phoenix View Post
You spoke of "hoarding". I'm a "collector" as friends and family have put it, and while I'm much better than I used to be, I still drive my wife nuts. Is that an ADHD trait?
I did a lot of skimming through these forums and believe i saw hoarding as a trait. I dunno for sure though. I think its a sorta addictive behavior. But he just can't throw things out. He has 3 basements completely full of mostly useless things hes acquired throughout his life. People come to him before they throw things out. Old radios, organs, typewritters, sewing machines, lamps, bicycles, engines, instruments and lots of completely random stuff. In 50 years I guess I'm going to have a really large yard sale! or maybe I'll just add on more to his collection .


Quote:
Originally Posted by Blood-Phoenix View Post
I know alot of ADHD people have addictive personalities, and I think I do.
My opinion is that this comes as a result of using the "altered state of consciousness" typical of any addictive behavior as an escape from the difficulties of their daily lives. What do you think about this, and if you don't mind my asking, what makes you feel this applies to you?

I was curious about your remark about "sexual exploration". I wasn't aware that there were sexual behaviors that were seen as common symptoms of ADHD, beyond the fact that an ADDer might develop a relationship with sexuality that was escapist or addictive.
I absolutely agree with that. I basically feel that
I have some sorta void, difficultly in social, or mentally challenging situations... Lack of stimulation, and a need or desire for stimulation.
This is what I believe leads to these addictive behaviors. I don't know if I would say my sexual exploration was a common symptom... but I was easily able to attribute it to this need or desire for stimulation. I did some somewhat strange things back in elementary school.. frequent masturbation for years and years leads to exploration, fetishes... finding what stimulates the most. But yeah it qualifies as escapist or addictive.

side note: strattera seems to have made writing this post easier...
and thanks everyone for your input
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