I hear the A in ADHD-I stands for angst
December 1, 2019 6:45 AM   Subscribe

How to get evaluation and potential treatment for ADHD-I, explained like I am 5 in the tiniest baby steps? Side questions, how to deal with self-doubt and concerns about judgment and medication side-effects?

About me: early 40s cis woman, unemployed, partnered but unmarried, Boston area. Long suspected I have inattentive ADHD. Currently unemployed, no health insurance. Only possibly-related issues are Gilbert's syndrome, which causes occasional random fatigue, and undiagnosed-but-I'm-pretty-sure-I-have-it PMS depression. I'm also anxious a lot but it almost always seems linked to my inability to manage myself. Had a GP but haven't been seen for a couple of years or more; not sure if I'm even still on his rolls. I'd be ok waiting until I get a new job to start this process but if there's anything I can do now that wouldn't be exorbitantly expensive, great. Either way I am super duper intimidated by all things healthcare from the logistics involved in finding a doctor or therapist (what kind? how do you find them? Do you just call them to make an appointment or do you need a referral? I hear they have waiting lists of months oh my god...) to dealing with anxiety around the process. I'm worried about being labeled a drug seeker and ruining my chances for future treatment.

I don't really want to take medications of any kind, especially not for ADHD as I already have trouble sleeping. But at this point I feel like I've hit the wall with how far my own workarounds can take me. I've read articles and books and blog posts and tweets full of advice, some of which I have successfully incorporated. Despite this I feel like I'm constantly swimming against the current of my overall lack of focus and drive. If medication can help me stop wasting my time, I'll try it.

What follows is a whole bunch more about me that might or might not be relevant.

Reasons why I think I have ADHD-I

1. Long history of disorganization going back to early childhood. Lots of comments from teachers to my parents about messiness, plus "not working up to my potential." I remember school as a nightmare of physical papers everywhere, underused planners, assignments invariably done at the last possible second if done at all, and staying home "sick" for days even weeks due to snowballing anxiety over missed work. Unfortunately I have chucked all my old report cards so I don't have any written records of this. Writing papers in college was the worst.
Counterpoint (?): I usually managed to get good grades anyway, expect in a couple of my worst subjects. I test well and scored high on the SATs. My mom once took me to a local learning center, when I was particularly struggling in high school. I was evaluated for a bunch of things but they didn't diagnose me with anything. I continued to go for a while and it basically just served as a place to do homework under supervision. I got into a good college and got my degree without any special accommodations.
-> Counter-counterpoint: I think tests in institutional settings are so much easier than say, writing papers, because aside from studying, (which for me almost always consisted of cramming for a few hours before the test,) there is no need to organize or structure my own time, PLUS there are so few distractions at a school desk with nothing one test booklet in front of me in a blissfully silent room, compared to other distracting environments, many of which contain the whole fucking internet.

2. My younger brother was diagnosed as ADHD-H as a kid. I am pretty sure my dad has some flavor of it too, but he has never been evaluated. Unlike my little bro I was not hyperactive or disruptive, instead I was able to spend many hours reading and had no apparent difficulties concentrating in class. In retrospect, I was/am often only able to process verbal information about new concepts if I can take notes while that person is talking, or if they also include visual aids. Fortunately, most of school involved note-taking, and most teachers wrote stuff on the board and there was accompanying reading material so I muddled through. I relate so hard to this. About the reading for pleasure - I spend soooooo much of my unstructured time unable to pick a thing to do, and instead just do soothing activities like eating or reading all day.

3. I am still messy and disorganized, but I cope/hide it much better now. These days, I know I need visual order to be calm and that cluttered surfaces stress me the fuck out, so at home I take the time to tidy throughout the day. My apartment looks lovely to guests. But if you look inside my bulging closets, dresser drawers, handbags, cabinets, or personal paper files, you would see that there is no internal order. These spaces are chaos zones that I will clean out in twice yearly binges (after which things generally degenerate again in a week.) I spend more time hanging out in my living room than in my closet so I prioritize straightening the living room. Of course, every morning is terrible when it takes me thirty real minutes to get dressed because I can't find a clean pair of leggings.

4. Same deal with work. My entire professional career up to now has involved administrative and project management work which has required a ton of organization and self-direction. Faking it till I made it luckily worked ok for a time, as I learned to use strategies such as blocking out my time and tasks every day, and "achieving through procrastination" by knocking out tasks as a way to avoid doing something else. But I would have bad days when hours would go by of spinning my wheels because I could. not. force myself to concentrate. (Negative credit to my incredibly noisy open-plan office.) I spent untold hours doing unreported overtime since it was often only possible to focus when the office was finally quiet, and I wasn't receiving a new email every ten minutes. I want to never do this again. (Just to head things off - advice to switch careers/industries is not gonna be helpful at this time. Believe me, I have a good handle on what I am good at and while I know there are jobs out there in which I wouldn't need to be organized or self-directed, those are generally an even bigger mismatch for me for other reasons. "Just work from home" is also not a solution since my home is tiny and full of its own distractions, plus not every organization allows/encourages it.)

5. I can barely keep up with the daily demands of life, let alone put in steady effort on passion projects. When I have free time I fritter it away. I have never had any long-term goals. People who can achieve things like getting graduate level education, buying a house or raising children amaze me. I can't do marathons. But I am aces at taking on new challenges in little sprints, such as organizing a move, getting to a volunteer session if someone asks me to be there at a particular date and time, giving feedback on an essay for a friend that they are going to send in the next ten minutes, etc.

6. Things that help: getting better than adequate sleep every day. Very low-moderate amounts of caffeine. Unfortunately caffeine destroys my sleep, which is why I am super apprehensive of ADHD medication. It's also really easy for me to have too much and tip over into hyperfocus on something I shouldn't be doing (usually screwing around online.) Making to-do lists. Taking frequent breaks to walk around. Having regularly scheduled check-ins with supervisors. Working in the mornings or evenings (afternoons are terrible.) Working in quiet, boring, distraction-free spaces with good natural lighting.

Thank you for reading, and any help/hope you can offer!

Throwaway email: the_a_in_adhdi_stands_for_angst@protonmail.com
posted by anonymous to Health & Fitness (12 answers total) 19 users marked this as a favorite
What you describe sure sounds like how ADHD affects me. But I’m not a doctor or your doctor, and ADHD is different for different people and even for the same person in different circumstances. (E.g., hyperfocus vs inability to focus)

I think the way any psych medication (Or really any medication at all) works is you try one for a while and if its side effects (Sleep disruption) are worse than the improvements it makes, you discontinue it and try something else. Most ADHD meds for the most part are fairly convenient to go through this process with in that they don’t take weeks to start having an effect and can be quit easily. So don’t get too hung up on possible side effects: if it doesn’t work for you, it doesn’t work for you, but you haven’t lost much by trying. And if it does work it could represent a pretty substantial improvement in your life!

Strattera is like the one ADHD med that is not a stimulant; it’s a selective norepinepherine reuptake inhibitor and has characteristics similar to SSRIs: it takes a while to get working and also has similar side effects. A friend of mine used to say it fixed her ADHD with no side effects but then she had a kid and something changed in her body and it stopped working completely. I tried it and it was great for sleep (normally my “it’s time to go to sleep” sensor doesn’t work very well; with strattera I suddenly get tired at a reasonable time and slept well!) It did okay with the other ADHD symptoms but other side effects made it untenable for me, so it wasn’t a good solution for me.

IMO it’s worth getting evaluated for ADHD even if you don’t take any medication for it. And then, if you do have it, learning a bunch about it. For me recognizing which of my challenges are affected by ADHD made it a lot easier to stop beating myself up over them and be more constructive about it. It meant that the things that I always felt should be easy but are actually very difficult for me are actually difficult for me, so it’s okay to struggle with them, and because those things are difficult I shouldn’t plan as though they’re not. And often it makes sense to do some extra work up front to break tasks down or build up some structure so that the difficult parts are more manageable.
posted by aubilenon at 7:33 AM on December 1, 2019 [1 favorite]

Well, your story sure sounds familiar to me, though I suspect I'm "higher functioning" than you are (my life didn't completely implode until I had a child). I was formerly diagnosed at 35 and have been medicated for 6 months now. I want to encourage you to not be afraid of stimulant medication--the immediate release Adderall that I'm on only works for 4-6 hours, and so I don't take it at night so my sleep isn't disturbed at all. In fact, I consume far less caffeine now and my sleep is much better as a result. Additionally, pretty much every aspect of my anxiety has disappeared since starting Adderall. I'm no longer socially anxious and can helm new projects that I once would have thought beyond me, such as leading a girl scout troop. I'm still a bit on the messy side, but cleaning and organizing no longer require the constant, exhausting work it once did.It's trivial and easy to touch up spaces. I notice mess more easily and address it quickly, without the focus switching problems. I'm so much less irritable with life. It's been a really lovely, validating, and life-changing experience. Life just isn't as much work as it used to be. It's not as hard. It doesn't need to be as hard for you as it is right now.
posted by PhoBWanKenobi at 8:04 AM on December 1, 2019 [6 favorites]

Sure sounds like me but I was diagnosed at age 7!

Without Insurance:
Explore your area's free/low cost mental health resources. Search terms include your city, county, state, free, low cost, sliding scale.

With Insurance:
+PPO: You don't need a referral. I found my doctor by searching my insurance company's website for doctors in my area. I called down the list until I was able to make an appointment.
+HMO: Go to your primary care doctor and tell them your reasons. They will refer you.

Note: It is better to call on off hours and leave a message than to put off calling for several months and fall into a guilt/shame spiral. In my experience, mental health books a month out. (I have always had insurance.)

Meds: Your doctor will likely recommend medication. You should try it. Tell the doctor your concerns about sleep. Ask about the differences in meds. If you don't like it, you simply don't have to take the rest. I've noticed that caffeine destroys my ability to sleep but medication didn't. Stimulant medication makes a huge difference in my ability to work without getting distracted.

A psychiatrist will prescribe medication and probably not do much talk therapy, strategy finding, etc. You'll want to find a psychologist/LCSW/MFT/whatever to address the self doubt, shame, and other ways this affects your life. If you get a bad one, find someone else. (One doc recommended I get a planner. Groundbreaking. :/ )

Getting Organized: Highly recommend "Organizing Solutions for People With Attention Deficit Disorder" by Susan C. Pinsky. Also check out Unfuck Your Habitat.
posted by meemzi at 8:18 AM on December 1, 2019 [1 favorite]

Your story sounds very familiar to me, too. In my case I was high-functioning when it was only me I needed to worry about. Then I developed some chronic health issues that affect functioning (thyroid, iron anemia) and had several children in rapid succession in my late 30s/early 40s and it all came crashing down.

I'm not clear from the question if you know about formal ADHD diagnosis. There's getting formally diagnosed, and there's describing your symptoms to your psych doc and them being all "yea, that sounds like ADHD, want some Ritalin/Adderall?" I did the latter for a few years before I went in for testing, which involved interviews and some computerized testing and my family had to fill out some observation forms. If you think you'd ever want an accommodation from work, for example, then you probably need the formal diagnosis. But you don't necessarily need it to talk to a psych doc about medication or other options.
posted by cabingirl at 8:21 AM on December 1, 2019 [3 favorites]

Your story sounds very familiar to me. I was diagnosed 6 months ago and it has been a very positive change. The meds have changed my life for the better, even if it isn't a cure-all. They help with task ignition, and if I meditate too, my ability to prioritize gets better too. Plus now knowing that there are a bunch of books that teach me something about myself is useful too.
posted by umbú at 9:41 AM on December 1, 2019 [1 favorite]

I (not a doctor) am female & was diagnosed in my late 40s and your symptoms very much sound like my own ADHD. I had a terrible time getting a diagnosis and proper treatment. It took 2 years and a lot of tears but I am so glad I persevered. Trust your gut!

I successfully treated my ADHD with microdoses of mushrooms...but the effects ceased after a year. :(

I worried about traditional meds also after a lifetime of insomnia. But life with a relatively low dose of adderall and an occasional mild sleeping pill (Trazodone) is pretty wonderful. Bonus: now if I have a bad night's sleep it doesn't effect me nearly as much as it did before meds.

If you do have ADHD and you are properly treated you will be SHOCKED looking back at how much mental and physical energy you were using up just to get through the day. There are still struggles but for me it's been a great comfort to be able to say "I have a neurological condition" instead of "I am a giant fuck-up".
posted by i_mean_come_on_now at 11:18 AM on December 1, 2019 [3 favorites]

adhd meds help me sleep. ymmv but it's usually adhd issues that's keeping me awake in the first place.
posted by poffin boffin at 11:54 AM on December 1, 2019 [1 favorite]

How some other people went about getting diagnosed as adults, in this March 2018 Ask; this was my own answer.

Steps I would take in your position:

1) Revisit my eligibility for MassHealth medical coverage, using this interactive checker.

2) Look through free/sliding-scale medical clinics in my area at FreeClinics.com; for example, one listing it turned up was Women’s Lunch Place, on Newbury (medical care, but also offers assistance in applying for MassHealth).

3) Ask a friend or my S.O. to help me with the finer details in pursuing this diagnosis and treatment, which could mean providing assistance with filling out forms, or making the appointments and getting to them, or whatever I was aware I was having trouble doing in this process. Asking for help with the laundry, if it's usually my solo chore, because thinking through what makes an appropriate outfit to wear to an appointment and having those clothes clean/pressed/at the ready is somehow overwhelming me so I'm avoiding it? Yes, that counts, I can ask for help with that. (Anxiety & executive dysfunction issues are yoked together for me.)

As I posted in the previous thread, I did get ADHD evaluation testing in my early 40s, through a free clinic in Pittsburgh. But I'd initially paid out of pocket ($60 for the appointment, a sliding-scale rate) to see my NY-based family's primary care doctor, to ask about trying medication for the same life-long difficulties you mention. She was open to prescribing Adderall IR, and the medication had a noticeable effect. My original prescription: 5mg, taken in the morning and again in the early afternoon. I didn't notice a difference until I tried 10mg in the morning. (Honestly, I could have written your question, down to the administrative/project-management work and hatred of open-office layouts. I was also afraid of stimulant medication; I finally sought medical care when all my worked-out work-arounds stopped working.) Going on stimulant medication did ramp up my anxiety at first; being able to think a lot of things through, all of a sudden, was upsetting and disorienting, and I had some other significant health issues going on at the time. After a few prescriptions, I had to find an in-state prescriber.

I don't know if going to that clinic appointment already having success taking doctor-prescribed ADHD medication (generic Adderall IR, first, and after a lot of bumps in the road with a variety of manufacturers and problems with medication, now as the Teva "name brand") to be seen as a person, and not as a "drug-seeker." Or if, since PA hadn't expanded its Medicaid coverage, it wasn't unusual that an unemployed me was also an uninsured me. I do think that presenting as a middle-aged, middle-class (I do remember hand-wringing over what I was going to wear, as hinted at above) white lady helped dispel any possible drug-seeking suspicions -- which was patently ridiculous, as I was there in hopes of continuing the helpful medication. Who goes to the clinic for the ambiance? I have the "Primarily Inattentive" type of ADHD, and anxiety issues; as it turned out, going on medication ultimately helped with the latter, too.

Also, the clinic doctor who did the evaluation, over the course a couple of visits (and I don't know if that time-frame is a free-clinic, overscheduled-doc feature), was really helpful. When I moved out of state the following year, he wrote a script for 30 days' worth of medication (and found a coupon online) at 4x my daily dose; breaking each tablet into quarters, I had enough medication to last through getting medical insurance, getting a primary-care doctor appointment, getting a referral to the psychiatrist, and having the psych appointment. The psychiatrist requested my paperwork from PA (which also took a few weeks to turn up) and wrote the new prescription, which p-doc was okay continuing after that consultation. I don't know how I would've jumped through all the relocation-related hoops to get care without that coverage. (One of the other, not-yet-diagnosed-much-less-addressed health issues was pretty significant anemia, and my thinking, on 'drug holiday' days when I skipped meds, was so very murky.) Please, ask the people in your life for help in getting the diagnosis if you think you could use such assistance right now.

poffin boffin makes an excellent point -- for some people, taking meds close to bedtime helps with sleep. Something else to know, since you mention PMS: ... many women find that their ADHD medication is not as effective in the four to five days before their menstrual flow. Some doctors will adjust patients' dosages before or during menstruation. More on cycles and ADHD.

If you do try medication, avoid food, drink and supplements with Vitamin C/citric acid about 90 minutes before and after you take your medication.

If you do try medication, be wary of the same thing you've noticed with caffeine -- you'll be focused on whatever you were doing when it takes effect. You'll learn what your windows are, to time doing something warranting that level of attention (detailed paperwork! a series of important phone calls! a big organizational project!) when appropriate. (She wrote, the person who once, during a period of medication adjustment, spent well over an hour using hand clippers to make the edges in a postage-stamp-sized lawn more pleasingly uniform.)
posted by Iris Gambol at 4:00 PM on December 1, 2019 [2 favorites]

I’ve been wondering a few things about myself and your description sounds familiar in a way I didn’t expect to see. Thanks for posting this question and I’m going to follow the comments with interest.
posted by PussKillian at 8:38 PM on December 1, 2019

Re sleep: having trouble winding down enough to fall asleep at night is very typical for people with ADHD. I’m not among those that actually fall asleep more easily with stimulants, but I make sure not to take stimulants too late in the day (what too late means depends on how long they stay in the body, for me that means no extended release after noon, no immediate release after 3pm). Perhaps it is related to caffeine metabolism. I have trouble falling asleep if I had coffee after mid afternoon. Faster metabolizers have no such problem and some can even fall asleep better with coffee.

If I can’t fall asleep despite the stimulants having left my body, then it’s usually because I’m thinking and doing so many things, i.e., the stimulants have left my body and ADHD restlessness reigns unchallenged. Then I take melatonin and try to convince myself that it’s better to give in to the resulting sleepiness rather than overpower it with an absorbing book.

Good luck for you, I hope you get help and can try out medication that works for you. Life can be so much less hard if the meds are working well, as I found out after my diagnosis in the early forties. Just the diagnosis itself helped so much by explaining and changing the narrative of my life.
posted by meijusa at 2:26 AM on December 2, 2019

I could have written a lot of this (down to the report card comments, doing extremely well on tests but not extended projects, having a brother with ADHD, even some of the work you've done). Some thoughts:

What's the goal here, the bottom line? If it's getting treatment, think about what your options are and what you're willing to do. ADHD treatment = stimulants + working on coping mechanisms (which you're already doing) either on your own or with a paid coach. (If your goal is having the diagnosis for some administrative reason, that's different.)

Stimulants can be hard on the body. If you have heart issues (e.g. palpitations and slightly off heart valves, like me, or any genetic propensity for long QT syndrome, whether you have it now or not), caffeine is a safer bet anyway. (You could have these and not know, and the screening tests wouldn't tell you unless you were already super abnormal. I found out about the valves - still "normal", just slightly leaky - through a test for something else that no doc would order for the hell of it. Long qt, may or may not have it but I just learned a parent does have it. It's often a genetic thing; having the genes for it increases the risk of getting it with a prompting cause like stimulants. Psychiatrists MIGHT do an EKG, which wouldn't necessarily pick up on everything.)

The sleep piece getting sorted (in a regular way) will make things 1000 times better, as you've noted.

Working full-time RIGHT in your weakest areas is bound to demoralize, bore, and demotivate you. People with (and without, but especially with) ADHD do best when they're highly motivated. (This would come up in ADHD coaching, if that were to happen.) Strongly recommend doing some career exploration and investing in a switch to something that makes use of your actual strengths, even if you don't necessarily love everything else about the job/field. Perhaps something that primarily involves accomplishing discrete, short-term tasks vs extended projects.
posted by cotton dress sock at 11:48 AM on December 2, 2019 [1 favorite]

(and of course maybe you'd have to go to graduate school to get to a job you'd like that would let you focus on discrete tasks... in which case the diagnosis obviously is worth getting in order to access supports.)
posted by cotton dress sock at 11:51 AM on December 2, 2019

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