Brain Fog
You used to be able to do long division in your head. Now you can’t do simple math on paper.
You always knew what time it was, never needed a watch, and had the entire television schedule memorized. No one bought a TV Guide because they had you. Now you can’t keep up with your favorite shows because you can’t remember the storylines. Or when they were on.
You never had to study because one pass over a book and you had it down. Now you can barely remember what you’ve read a half hour after you put the book away.
You write for a living, but you stumble over spelling words like “who”.
Brain Fog or Cloudy Consciousness is a cognitive disorder caused by…something.
…inattention, thought process abnormalities, comprehension abnormalities, and language abnormalities…reduces quality of life by impairing work activities, social interactions, and driving, but it does not effect basic daily life activities such as dressing, personal hygiene, eating, shopping, answering the phone, or taking public transportation…may even exhibit normal cognitive performances, but overall productivity may suffer from inattentiveness and fatigue secondary to attention abnormalities…(Doctors) have a tendency to “psychologize” it and misdiagnose it as depression or apathy.
So, I’ve been struggling with this for over a decade, and did not get a diagnosis or adequate treatment until 2012 (UPDATE: diagnosed in part, but underlying cause not addressed until 2016 – auto-immune disease. Bummer.) It got bad enough that for years there, I was pretty much disabled, producing only a few pages of work a month. I was so out of it that I had trouble remembering things like my middle name. Every day was one long comedy of errors – variations of not being able to find my keys.
By 2006, I thought I was pretty much done and would not be able to work in publishing anymore.
A close relative also had the same symptoms, and, as I did, later developed severe migraines. (For those of you who have never had a migraine, chronic migraines are debilitating. Mine include migraine aura, temporary blindness, and vomiting. Hit with migraines up to 21 days every month, as a writer and artist, I was simply unable to perform.)
He was diagnosed with ADHD and given drugs that made his problems even worse. Only after years of bad reactions to the medication did a doctor finally figure out the real problem behind his brain fog was chronic Lyme Disease.
My issue was an even more obvious and common problem – an endocrine imbalance (EDIT: alas, caused by that auto-immune disease that went undiagnosed for years. Can you say bummer, twice? I knew you could.) Once that was addressed, most of my brain fog symptoms disappeared (They can go into remission as the disease does, and come back whether you’re getting treatment or not. I got gobsmacked Fall 2016, but feel better several months later. Hope springs eternal.) After years of unproductivity, I’ve published a number of books over just the last couple of years.
Brain fog isn’t just forgetfulness: it’s living in a bizarre twilight world where you are half in and half out of consciousness. Everything seems grey, and you don’t feel the passage of time. ( I could not remember the month, day or year it was.) You float through life, but it’s not a good feeling. You have an almost complete lack of awareness. You’re there, but you do not process what you’re experiencing. What memories you do manage to internalize seem as if they happened to someone else.
If you’re a high energy person like me, you feel as if you’ve had a personality transplant – not a good one. You are listless, apathetic, and you don’t have the energy to fight to get better.
What’s worse is it may seem like depression or ennui to others, when what you really have is a medical problem no one has caught yet. So you’ve got people telling you to snap out of it as if you have magical powers over your thyroid or your progesterone levels, as if you can talk yourself out of Lyme Disease, Celiac’s Disease, or Lupus. After a few years of dealing with all this, you do get depressed about it in the end.
Back in the 1980’s I had chronic fatigue syndrome (they call it myalgic encephalomyelitis now, I’m told,) and when I began having brain fog problems, I was terrified that the viral infection had returned. I’d been symptom free for over 10 years. However, unlike chronic fatigue, my brain fog had no accompanying flu-like symptoms or fever (EDIT: not at first. Later came joint and muscle pain, but I no longer run a mild fever, which I always did when I was first hit with encephalomyelitis. I ran a fever almost constantly for years. Researchers believe that encephalomyelitis, which is an auto-immune disorder, may go hand in hand with the Hashimoto’s disease, with about 20% of patients having both diseases. Hashimoto’s also runs in my family. )
I wondered if a series of personal problems hadn’t plunged me into a depressive state. Everyone feels sad when people die or when someone embezzles your money. Most of us move on. I moved on, but didn’t feel better.
Whatever, I felt lousy and couldn’t get stuff done. I was able to get some relief from my symptoms with over the counter energy supplements and herbal remedies supposed to increase pep and attentiveness, like Black Cohosh and green tea. Back in 2010, I blogged about “losing my mojo” and gradually getting back in the game. Even so, I was only working at about half the rate I used to.
Now I feel pretty darned good and am working at about 80% of my prior work capacity. I expect that will improve in the coming months. But I wish my doctor had found out what was really going on, oh, about ten years sooner. Because I lost a heck of a lot of quality of life in there.
There are many medical problems that can cause brain fog. It’s hard to deal with because you feel so listless and out of it that you have trouble finding the motivation and energy to find out what’s wrong. You may have something that affects a lot of people such as low testosterone or peri-menopause, or a thyroid problem. Or you may have a disease no one thought to look for.
If you are unproductive, people tend to dismiss that as a character flaw. At first, I wasn’t very kind to myself when this was going on. I kept thinking if I exercised regularly, or ate the right foods, or stayed motivated, I’d snap out of it. I thought I’d gotten lazy. I’m sure lots of people thought so.
People would joke about my absentmindedness, and when I was at shows, I’d be embarrassed by my inability to add up a total on a purchase, or remember things I’d worked on. Clients didn’t appreciate my spacey attitude. Friends who used to chatter on the phone with me wondered why that stopped. People I met at conventions were offended that I couldn’t remember them. I’d screw up orders and commissions. I’d forget entire assignments.
Now that I know I have an medical problem, it’s easier to take.
But I have a lot of catching up to do. My income plummeted for a long time, my medical bills skyrocketed, and I’ve lost years of prime productivity.
When I first mentioned my spaciness, dizzy spells, headaches and other problems more than a decade ago on my old (now down) blog, several of you figured it out immediately, long before my doctor did!
But a couple of you blogged that I must be a drug addict or drunk. That was sweet. I forgot a lot of things during all this, but I remember you.
Several readers who also struggle with brain fog ask me to blog about how I deal with the problem.
Sometimes, not so well. Sometimes like a champ.
These days I’m much better, because hey, we know what’s causing this and the fix is pretty easy. But it’s a question of maintenance and I still have brain hiccups.
For whatever reason you’ve got your brain fog, your working memory is completely screwed. You have to reduce stress and replace working memory with organization.
Get organized, stay organized, and keep notes and records on everything.
You will not be able to remember things other people take for granted. Think like an engineer, and back up, back up, back up. Redundancy is your friend. This is why I beg people to follow up with me, and to never make requests of me at conventions or other events. I simply won’t remember them, and then I have to deal with these people being pissed off later.
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Keep a blog or private journal, save every email, take notes on everything, and keep them in an organized format to which you can easily refer.
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Don’t try to reinvent the wheel with list-making: keep to a simple, easy to follow routine.
Let the people who need to know realize that they must follow-up with you.
You don’t have to give clients your sob story: few people appreciate it when they feel guilted into treating you differently. Everybody has problems and some are much worse than yours. Just send a friendly note once in awhile to let your associates know to follow up with you.
OK, I’ll blog more about this later.
I promise to remember.
Acephalous made Work Bird. Work Bird made Acephalous write a dissertation.
24 Comments
Sarah Beach
I love Work Bird. I need to download him again, because he got lost when I got a new hard drive.
Sue McLoughlin
I’m glad you’ve found the cause of this, and are doing better! Some of your symptoms sound eerily familiar to things I’ve experienced. I always thought that perhaps I just have too much on my plate at all times. (Which may be the case!) I am the same way as you about taking orders at conventions- I can have a long conversation with someone about something they want to commission, but unless I write down every detail, I just can’t recall it all later on. Haha- I’ve even had people mention pieces that I’ve made several years ago, and I can’t for the life of me remember them!
Colleen Doran
🙂 Too much stress can cause a temporary fog, but I de-stressed and de-stressed and just got worse. Nothing seemed to clear it up. I know a lot of women in their late 30’s and 40’s too who are going through peri-menopause, have never even heard of it, and are having serious mood and memory issues. And my sister turned out to have Celiac’s disease, which messed her up bad: brain fog was a major symptom.
John Platt
Thanks for sharing this. I’m glad you are feeling better and I hope your example helps other people.
Marina
I did a lot of what you suggest when I started college and it was invaluable. I sat down at the beginning of each semester and plotted out my work progress. In Grad school it was a way to keep my portfolio of work organized. Now that I’ve graduated I’ve found my calender actually has me better organized than some places I have appointments with.
Colleen Doran
🙂 Marina, that makes me very happy, thank you for letting me know.
A lot of this blog is about getting and staying organized, for the now-obvious reason that I can’t function without it. However, I got so spacey at times, I had trouble even remembering that I’d made a list.
Now I am really good about it again. It makes a huge difference.
Penny Young
I had to look up how to spell appalled today and that is not a thing I usually do. Great advice. Thanks for sharing all your thoughts on this and I LOVED LOVED the Violet, Brittney (one t or two t’s? argh!!! ) and Sherlock gifs!!
*runs and hides from stern owly stare*
Penny Young
*peeks at bird again* erm… I mean eagle-eyed stare?
Clint H
So glad you found the cause of this. You’re too wonderful a talent to let languish.
Colleen Doran
🙂 I know this sounds odd, but I had the tv taken out of my studio years ago, because it was a waste of money. I would watch a show and not enjoy or remember it very well. Now I am loving all the tv shows I get to watch!
Of course, almost everything I watch again is like seeing it for the first time.
ScarletRegina
This article is beautiful. I’ve dealt with brain fog my entire life due to my mitochondrial condition and very rarely have I seen it, and its effects on a person, explained so well.
I, unfortunately, have to be careful taking medications as they tend to not agree with me on a lot of levels, but over the years I’ve learned tricks to help manage and mitigate brain fog. Still, there are some days where nothing can be done.
Thank you for writing this – for sharing your story. I’m glad you are feeling better and I hope that continues. <3
Colleen Doran
Thank you Scarlet! I am very honored by your note. I was really nervous about writing this, but I am glad I did.
R. J. Whyte
Ahhh, I felt things when I read this.
I was diagnosed with ADHD early in life — for the purposes of stilling mania, the drugs seemed to have worked — but the fog and the typos never went away of course. I have recently been diagnosed with low thyroid thingy, and take hormone stuff for it, but I assume most of my similar symptoms come from having always been simply dyslexic and cyclothymic. I have never been diagnosed with either of these, to my knowledge, but these kinds of things tend to be, like you say, overlooked in favour of me just being a lazy insane person who should go die (to put it bluntly).
No migraines, etc, so I’m tempted to say my brain fog isn’t bad — but Jesus, if I don’t spend forever at the art desk seemingly accomplishing nothing. I’d like to attribute it to being amateur, but I ~have~ been “a serious” amateur for a long time, so… Yep, whatever it is, it’s bawls.
Apps like “Freedom” (an internet blocking thing) and all other manner of organizational methods are a great help, as has been maintaining a single friendship with a person of similar problems. Also, taking charge of your craft by attempting to actually learn (through books and so on — especially on writing; like Brian’s McDonald’s “Invisible Ink.”) prior to diving headfirst into frozen-over lakes has helped me at least completely erase “art/writers block” which certainly helps with time. Have not had art/writer’s block in 2 years; this is big, compared to my experience with it as a youth.
Still. Very rarely meet personal deadlines. >:V
Kevin G.
Thank you for sharing this, it’s helped my feelings a lot. I’ve been struggling with a slightly less severe case of this for years. When under heavy strain I’ve experienced migraines and blurred vision — it really scares the pants off you the first time it happens. I used to be that kid who memorized everything I was interested in, and had loads of energy to burn. It’s been so long since those days that I vaguely remember what it felt like. It’s been about a year and a half since I found out my thyroid isn’t working right and started medication, but it hasn’t helped much. Been trying different antidepressants and need my thyroid looked at again soon, if I can find the right doctor.
I know my family are frustrated with me, but I’m way more frustrated. Needing energy drinks every day to hopefully get some focus and drive gets old quick, and does not guarantee a productive day. I’ll keep seeking a medical solution and hope that soon I’ll be closer to my old self. Your story gave me a definite boost Ms. D, thanks for sharing it!
Sarah Beach
Not directly related to what you have talked about, but similar — some of the side effects of statins (cholesterol lowering medications) that go under-reported are aphasia and a degree of brain fog. A writer friend had been put on Lipitor and developed pronounced aphasia, she got herself off it fast (NOT the sort of thing you want to be dealing with as a writer!). So when later my own doctor wanted to put me on a statin, I mentioned this. He dismissed it as a rarely reported side effect and proceeded. So I paid attention to my own reaction to it.
And I had a reaction — I too developed aphasia. It also caused me to have a hard time conversing, because my mouth was stumbling all over the place, even though in my head, the thoughts were clear. The mechanism to get them out was disrupted. I also realized that generally, I was not paying as close attention to my surroundings as I usually did. My attention and responses were vaguer (not a good thing when driving in LA, especially when making right turns on red).
However, one day at work, I was intending to type “keep at hand”, and when I looked at the screen, I saw I had typed “meek” instead of “keep”. That was it. I stopped taking the statin, and in three days the brain goop cleared up.
I came to the conclusion that the reason the side effect on dampening the brain was rarely reported was that few connected the symptoms with the medication. They probably got written off as just signs of getting older. It’s made me wonder how many people have been affected this way and had it dismissed.
(Scientifically speaking, your brain needs cholesterol to process things, as it aids the neurons in their functions. A cholesterol lowering medication goes after the stuff systemically, not just in your blood vessels. )
Colleen Doran
Medications will mess you up. I’m close to several people who are on both cholesterol medication and medications for mental illness. They are all very intelligent, high achievers, and the medications wipe them out.
The cholesterol medication got ditched it was causing so much brain fog, but my friend who is a scientist at a major university can’t stop taking his meds. They just have to keep adjusting until they find the right balance. It’s such a life rip off.
I can’t say any of my symptoms were ever written off as signs of getting older especially since I first started to notice something funny when I was still in my 30’s, and if you have a conversation with me, you might not even know there is something wrong. However, if you place an order with me and there is anything out of the ordinary about it, I can really screw it up. It gets put in the “circular file” in my head, and it can take a long time for me to resolve the issue. There is no reason behind it except that it is outside my routine, and things outside of my routine can be very disrupting. It’s better now, but as I said, I still get brain hiccups. I don’t even like to take a day off work because of the disruption.
When I had a really candid conversation with my doctor about my headaches and messed up life about two years ago, she was very understanding and my description of the problem was very specific. It took a long time for me to articulate what was wrong before, because I didn’t understand it as a medical issue. I thought it was lack of self discipline and focus, something I could beat on my own.
It wasn’t.
Anyway, I was concerned about my ability to work with my schedule this year, so I had a complete physical in November. I passed with flying colors. But for my usual issues with abnormally low blood pressure and pulse, I’m fine.
BTW, it’s really embarrassing to have a little fugue episode in the middle of a lecture or interview. Ugh.
Michael P. Stein
If lay people diagnosed you before your doctor did, I’m wondering if you should be in the market for a new doctor. Do you think the delay in diagnosis was in any way related to the economic issues of health care in this country – i.e., as someone without company-paid health insurance, you didn’t get all the tests you would have been given early on if you had had the kind of coverage provided to full-time salaried people at large corporations?
The TV schedule thing might not respond completely to medical treatment, though. There are more channels now even over the air than when I was a kid, and it seems that shows go on hiatus and get moved to new time slots mid-season much more than they used to. If you don’t remember a show being at that time on that night, or don’t see a show that you expected to see, the problem might be in the TV network rather than your brain. 🙂
Colleen Doran
Well, yes and no. I have health insurance, but when I first started having problems I was living in the city and went to a doctor where no one ever considered this as a health issue. And I guzzled energy drinks and Hydroxycut which, I am sure, covered up most of the problem. What I got were spikes and drops, day after day. And I was in peak condition, very fit, and I exercised every single day. I’m sure no one would look at me and see anything wrong, or even notice anything wrong when talking to me.
As I wrote above, at first I was sure I was just down because of some personal problems. I was very anxious and even breaking out in hives.
My assumption was that I had simply lost my mojo and that I was responsible for my own lack of pep and discipline. I remember for a long time thinking that this was what writer’s block must be.
I don’t think anyone considered this as a serious problem until the migraines became completely disabling.
I’d bet most people feel the same way. In fact, it was my new doctor (got her about 4 years ago) who insisted on a complete physical, not me.
So, I internalized and “psychologized” the problem myself, assuming I was simply lazy or dull or down in the dumps. But when you get to that point, you may not keep looking for help.
A lot of people without health care are not going to get the help they need, and if they are like me, their solution is not only easy and cheap, but it costs a lot less than a reduction in income of more than 2/3, which is what happened to me.
My health insurance got dropped a couple of times because my income fell so much I could not afford it. When that happened, and I was able to afford the insurance again (usually after just a few months) I waited for months more to get care, because I did not want it (whatever “it” was) to be written off as a “pre-existing condition” or my insurance wouldn’t cover it. I was paying hundreds of dollars a month for the migraine medication. Now I pay less than $20 a month.
I am sure our society is much better off with me producing and earning than with me lolling about and not contributing to the tax pool. People can scoff at health care and rules about “pre-existing conditions”, but I’m glad I can’t be bumped, or charged $33 per pill anymore.
Christianne Benedict
I spent most of last year in a brain fog. It was very alarming, considering that last year was the first year that I’ve been trying to make do as a freelancer. The culprit for me was a drug mix. My endocrinologist changed my hormone regimen last January and the results were disastrous. Fortunately, it was fixable, but not before months of productivity were lost. Frustrating.
Colleen Doran
Ugh. Wow, so sorry Christianne!
Meredith
I’ve recently been told my child has ADHD- but I have a hard time believing it because he has whole weeks when he’s quite attentive and focused. I’m convinced that it’s a nutrition problem or allergy…would a nutritionist be a place to start?
Colleen Doran
I’m not a doctor, but I’d try anything at this point. Gluten can be a big cause of brain fog. If you are gluten intolerant or have Celiac’s Disease, you might want to try cutting gluten to see what happens.
This website has a list of possible causes of brain fog.
http://www.drlwilson.com/articles/brain_fog.htm
Almost everyone I know who was told they had ADD didn’t have it. I read a lot about ADD being overdiagnosed these days. Like I said, I’m not a doctor, but you might want to root around.
http://www.huffingtonpost.com/allen-frances/attention-deficit-disorder_b_1206381.html
That my relative, of all people, was diagnosed with ADHD was simply absurd. None of us believed he had it, and the medication turned him into a zombie. Now that he has been off it for some years, he is fine. He is fit and healthy and does not have attention problems. He still has lingering effects from Lyme Disease, but none of them are major or attention-related.
I’d hate to steer you wrong. You know your child better than I do. There is nothing wrong with getting a second opinion. If it feels right to you, then you should do that.
Meredith
I am looking for second opinions, but it helps tremendously for someone else to tell me I’m not crazy. I am under pressure from teachers, counselors, doctors, and family members to medicate him without seeking causes or trying nutritional changes first. It’s like the whole system is stacked against common sense.
Colleen Doran
I don’t see why you shouldn’t try a nutritionist or check for allergies before going full on with medication. I mean, it can’t hurt to know one way or the other.
Here is all the stuff I went through while trying to figure out what was really wrong:
Sinusitus: Had chronic sinusitis from 1992-2005 caused by an allergy to the carpet adhesive in my old condo. All assumed my occasional dopiness was due to my plugged up head. But my plugged up head cleared in 2006 and my dopiness didn’t. It actually got worse.
In 2008 I contracted whooping cough and pneumonia. Another assumption made about feeling low.
Stress. I broke out in hives and felt very poorly, and the assumption was my dopiness was due to depression. Everybody gets sad, and that’s normal. Depression is something else. I was told to think happy thoughts and get fresh air and exercise. Which I already got. And plenty of it. I didn’t get any better, and by then, I was sure the issue wasn’t depression.
Low blood sugar and low blood pressure: both exacerbate the brain fog and confuse the diagnostic issue.
So here’s this laundry list of stuff which made my symptoms worse, and steered everyone in the wrong direction for well over ten years.
Since my medication has a serious positive impact on my state, I am more than happy to take it now, as you may imagine. But I don’t want to take anything I don’t have to take, especially if it’s the wrong thing! I do believe there’s a tendency to over-medicate these days. And since an ex-family member lost their medical license for severely over-medicating patients, I don’t take any doctor’s word as gold. I ask questions and get second opinions.
You have the right to keep on looking and to go through other possibilities before settling on one thing. You just want what’s best for your child.