A few years back, in my early 30s, I was diagnosed with ADHD. It was something I had suspected for decades, but was always told I didn’t have it, that all my concentration problems came from my OCD (which was diagnosed when I was 8 years old). The diagnosis was a huge “I told you so!” moment, and I wanted to go back and tell all the doctors I had as a child that if they bothered following any of the guidelines for diagnosis, they would have seen that it was quite evident that I had more going on than just OCD. If they had actually done their due diligence all those decades before, I could have actually done better in school, instead of struggling through every subject, barely passing and graduating.
If you’re interested in the whole story of my OCD and my struggles through school with it, I wrote blog posts about it several months back. It’s in three parts– Part 1: The Beginning, Part 2: The Middle, and Part 3: 29 Years Later.
My current state has been unfocused and all over the place. My mind has been all over the place lately, unable to concentrate on much of anything. Watching TV or movies is even hard, and something I used to enjoy and do often– reading books, has been impossible.
A few years ago, I read 37 books in one year. I haven’t even read 1 book this year. My favorite series– the “Outlander” series, came out with the 9th book in the main series last fall– a full year ago– and I still haven’t gotten more than 30% through the book. In years past, I would read each book in days, or a week or two at most. Now it’s been over a year, and I haven’t even opened it in over 6 months, because I just can’t seem to focus.
I haven’t written a blog post in over a month– I spent the month of October busily making infographics for my Instagram. October is Dysautonomia Awareness Month, and I posted a new infographic every day to help raise awareness that we so desperately need.
Diagnosis
I started going to psychiatrists at the age of 7 or 8, when my OCD symptoms seemingly started out of nowhere one day. By middle school, it was clear to me that I had trouble concentrating in school. A couple of my friends had what was still referred to in the 90s by doctors as ADD. I didn’t personally hear about the ADHD change until I was diagnosed a few years ago. Many of my friends, who were previously diagnosed in the 90s (both early and late 90s) still don’t know.
When one of my close friends was telling me about her diagnosis, and going to the nurse’s office every day during lunch to take her medication, I learned about the symptoms of what we at the time called ADD. I knew I had the symptoms, and when I talked to my own pediatrician, psychologists, AND psychiatrists about it over the next several years, they all denied the possibility that I could have it, and told me it was my OCD that was making it hard for me to concentrate. They wouldn’t even evaluate me for it, even after I asked multiple times to multiple doctors. I even asked multiple doctors as an adult, and was still denied being evaluated for it.
I knew deep down it was more than OCD because the things that were floating around my mind during my moments of inattention weren’t necessarily related to my OCD or anxiety, they were just rapid thoughts, coming through like quickfire. I was unable to even finish one thought before the next thought came barreling through my mind like a high-speed racecar.
I struggled throughout school, having real trouble concentrating, but no one would do anything about it. I barely passed, and had to retake some classes, and had to take fails in others. I made it through though, and graduated high school.
When I got older, I’d try to meditate multiple times, and even took seminars and classes. It would never work though, because the OCD (and what I now know is ADHD) would not let me focus. I’d try to put up a wall in my mind, and I’d try to envision a literal brick wall. But again the wrecking ball of thoughts would come and smash the wall to pieces, leaving me unable to even hear the person giving the seminar as my thoughts came in singularly, but sometimes by twos or threes. If you haven’t experienced it, it’s hard to describe, but the constant chatter in your mind (which I’m now guessing is a combination of OCD and ADHD) is a real struggle. It’s near impossible to process information at times like this.
Fast forward to 2015 or 2016, after I started seeing my current neurologist after my diagnosis of POTS in 2014 (that I think started in the spring of 2012). My neurologist suggested doing cognitive testing, because one of my big complaints was my brain fog. I don’t remember all the things that happened to get the diagnosis, but I know a NeuroTrax test was given to me. A NeuroTrax test is a computerized test that assesses brain wellness across many different cognitive domains, including memory, executive function, visual spatial perception, verbal function, attention, information processing speeds, and motor skills.
The results came back that I did have significant cognitive impairment from my brain fog, which was caused by dysautonomia. In addition, for the first time in my life, I was diagnosed with ADHD. When I saw ADHD, I questioned my doctor, because I knew I wasn’t hyperactive. That’s when he told me that all diagnoses were now ADHD, and ADD was a term of the past. I was 30 or 31 at the time when I was finally diagnosed with ADHD, and it felt like a huge “I told you so!” I knew it, and no one would listen to me for decades.
History of ADD & ADHD
First discovered by a Scottish doctor in 1798, Sir Alexander Crichton noticed some people were easily distracted and unable to focus in the same way others were able to. He also noticed that it seemed to start early in life.
In 1902, Sir George Frederic Still lectured about what he described as mental conditions which caused children to be more impulsive, had problems with attention, and self-control. He also said that these children had otherwise normal intelligence. He noted cases of 15 boys and 5 girls, which is why over 100 years later, doctors still seem to believe that it’s more prevalent in boys than girls, even though now a lot of researchers are starting to think it affects boys and girls more equally.
In 1932, two German doctors found what they called hyperkinetic disease. They found that children with this condition couldn’t sit still, and had difficulty following rules in school and getting along with their fellow peers.
ADHD wasn’t included in the American Psychiatric Association’s book “Diagnostic and Statistical Manual of Mental Disorders” (DSM) until the second edition, which was in 1968. It identified it as a hyperkinetic reaction in childhood.
In 1980, the third edition of the book was released and the condition was renamed “Attention Deficit Disorder”, or ADD. There were two variations: ADD with hyperactivity and ADD without hyperactivity.
In 1987, the name was changed again to Attention Deficit Hyperactivity Disorder, or ADHD, which combined inattentiveness, impulsivity, and hyperactivity.
In 1994, a fourth edition was released. The new edition now listed three types of ADHD: mostly inattentive, mostly hyperactive and impulsive, and a combined type that included all three. This is also the first edition to finally recognize and mention that these symptoms do not necessarily go away when children become adults.
In the 2013 edition, the APA (American Psychiatric Association) designated the three types (inattentive, hyperactive, and impulsive) as the three “presentations”.
Facts About ADHD
It’s a known fact that boys are far more diagnosed than girls, today the ratio is 3 to 1, but in previous years it was a ratio of 25 to 1. Maybe it’s not because boys are more likely to have ADHD, and actually because girls are just less likely to get diagnosed.
Over the years, it was believed girls were less likely to have ADHD because girls tend to be less disruptive, less aggressive, less impulsive, and less hyperactive than boys, overall.
Now it’s known that although hyperactivity often lessens with age (typically after puberty), the inattentiveness usually does not.
Another interesting fact is that 64% of children with ADHD also have at least one other mental, emotional, or behavioral disorder. 52% have a behavioral or conduct problem, 33% have anxiety, 17% have depression, 14% are on the Autism spectrum, and 1% have Tourette Syndrome.
I wonder how many have OCD. A high amount, I suspect.
Some typically overlooked symptoms, besides the typical symptoms everyone knows about, include: sleep problems, poor working memory (always misplacing things, blanking out during tests, forgetting names, etc.), poor handwriting, mood swings and irritability, time blind, jaw clenching, executive dysfunction, talking too much, impulsive shopping, and more. The list of symptoms seems endless, and there is so much connected to ADHD that I know I myself never considered, and I’m sure many others are the same.
Being an Adult Diagnosed with ADHD
I often wonder how my grades would have been if I had properly been diagnosed when I was still an adolescent, or at least a teenager. I wonder how much less I would have struggled, and how much easier it would have been for me to concentrate.
My inattention issues tend to ebb and flow, and right now I’m struggling quite a bit with it, unable to complete the simplest tasks sometimes.
Executive dysfunction is real, and it’s something I really grapple with. Executive dysfunction is the struggle to analyze, plan, organize, schedule, and complete tasks. Executive dysfunction is a very in depth part of ADHD, and it’s something I should probably make a separate blog post about.
When you’re not diagnosed until your 30s, you’ve already been living with what feels like your “bad habits” for so long, it’s hard to make the correct changes to live a more functional life.
When it comes to treatment options– I have POTS, and really bad tachycardia from the POTS. It’s hard to figure out what treatment might be best because of this complication, and in terms of medications, I haven’t been on much.
My doctor recommended Modafinil a while back, since it wouldn’t affect my tachycardia like a stimulant might. He thought it would help with my fatigue, the brain fog, and possibly my ADHD. The insurance company denied it though, even though they have it on their list of medications they’d approve eventually. I went on Armodafinil instead since insurance would approve that, but that actually made the brain fog worse. My doctor tried to get Modafinil again after that, but they still kept denying it.
Finally in the early spring of this year, I was put on 5mg of the generic for Adderall. 5mg is not much, I know, but we had to test it out because of my POTS. So far, I do see a slight improvement with my energy, but no help with the brain fog or the ADHD. I’m hoping for an increase when I see him in a few months (he’s impossible to get an appointment with, so I only get to see him once or twice a year).
Now that I’m on Adderall though, even though it’s only 5mg, there’s all sorts of hoops I have to jump through to get my prescription. Once again though, that’s for another blog post at another time.
Being diagnosed with something that most people were diagnosed with as children can be a struggle, because other adults I know have learned how to live with it decades ago, while I’m still learning what it means and how to go about living with it.
I often say my young diagnosis of OCD is why I’m able to take other diagnoses I’ve had over the years in my stride, but this one feels different because I should have been diagnosed younger. I should have already had my adjustment period, and learned how to live with it. But instead, I’m still trying to figure it out. It’s not something I’ve really looked into much, mostly because I have so many other conditions on my plate, and this one gets put on the backburner for that reason. But I’m learning, and hopefully I’ll learn to function better (procrastination is a real problem!) in the future.
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