This blog post/conversation actually started earlier today on Twitter, prompted by a question from @splinteredmind and @beyondmeds. My profile on Twitter (@18channels) is a little provocative at the moment and reads: “Don’t send me anti-meds SPAM. I will report/block/humiliate you.” I wrote that because I’d had a classic “alternative treatments SPAMMER” respond to one of my post with an insultingly thinly veiled suggestion to try their “method”. No thanks buddy…but more on that in a bit.
So, Douglas Cootey (a worthy blog-tender at A Splintered Mind) asked me: I’d like to discuss something w you. You know I emphasize dealing with ADHD w/o meds. What about my approach doesn’t offend you?”. I started reading his blog when he was still in his staunch anti-meds era and I kept reading it because I respected his reasons for feeling that way. I really appreciated his question, and I’m glad he asked it, because the issue of deciding to take or not take psychotropic medications is one that every person who recieves a diagnosis of ADHD ends up thinking over.
The short version of my answer is that I think people should use whatever treatment they feel improves their life in the most meaningful and positive way for them (and Cootey seems open to other people choosing the treatment that works for them. He’s not evangelizing.). I am not against non-medication treatments at all. It just happens to be the case that I like using them, and incorporating them into my own treatment. There are lots of coping strategies and treatment methods out there, medication is certainly not the only answer. Some people exercise, some people tinker with their nutrition, some people use spirituality, some people use therapy, I’m sure there are lots of other ways people explore, we’re a creative bunch. I have my own opinions about some of these tactics but ultimately it’s not my job to make these decisions for other people. I myself, had some other issues to tackle before I was even ready to seriously consider the idea that ADHD might be an accurate description of anything that was impacting my life. I’ll discuss this because it will help frame where I’m coming from on this issue.
I have issues with hypoglycemia (low-blood sugar) and in my mid-twenties, I finally got to the point where I realized I had to do something about it. I began snacking and eating more frequently. This impacted my life positively, but having removed that layer, I realized there were more layers. Over the years since then I have continued to peel back layers. Eating less sugar, eating more high glycemic index foods, remembering to take breaks, finding employment that works for me, learning to use logic to mitigate anxiety, learning how to avoid substances that made me not feel great (caffeine and I have a very fragile relationship so I usually avoid it because it’s anxiety provoking), learning to eliminate stressful people and situations from my life…all of these were items that I needed to explore. More recently I have discovered that I cannot eat gluten because I have a very high sensitivity to it, and that sensitivity was probably impacting me for a long time. After removing all of these layers, however, there has always been a remaining throughline of what I now know is described as ADHD, and none of those adjustments seemed to manage it effectively enough. My official diagnosis is ADHD and GAD (General Anxiety Disorder).
I was eager to try meds because after trying just talk-therapy (and tinkering with my life in other ways) it was something that I was interested in. I’m a compulsive information gatherer, and I make sure to ask my prescriber questions. We have worked out a good relationship as we’ve gotten to know each other. At the time I was in grad school so I had all kinds of access to the latest scientific studies on pretty much any topic I wanted to explore. I feel well-informed about my treatment decisions. I understand that meds aren’t perfect, and that they have side-effects. I understand that some of those side-effects can be crazy. I was willing to take the risk because honestly – I was at a point where ADHD and anxiety were too disruptive in my life. As chronicled in the early days of this blog, I tried several different meds and some of them were awful. I was overmedicated at some points, hallucinated, was way too dopey, way too speedy, puked my guts out, had bruising that looked like something out of a horror film…I react to very small doses of meds and that, too, caused some interesting experiment failures. As it stands now, I’m perfectly happy with my 25mg/day of nortriptyline, and my 10-15mg/day of methlyn (see what I’m saying about small amounts?).
I also have one additional curveball factor in play here – an atypical migraine disorder which is actually the reason I started the nortriptyline. It’s a preventative measure. Without it, I am disabled by constant and severe vertigo, as well as a handful of related mentally-disabling neurological issues. It’s just a perk that it also takes the edge off of my anxiety. My brand of anxiety isn’t generally situational…normally it’s a chemical reaction that I don’t seem to have a lot of control over, and it’s very grating. I’m delighted to have the knob turned to “lower”.
Phew. Okay. So in my own ADHD journey, I had actually already started exploring other types of choices, before I even got to the point of the meds conversation. I understand that all patients are not equally equipped to effectively advocate for themselves, and that bothers me, because I know that it means that lots of people end up taking meds without really knowing what they might be getting themselves into. And really, anyone could end up in that situation if they trust their medical providers maybe a little too much. That’s not a problem with the meds though…it IS a problem with the way prescribers may be approaching patient care.
It is for this reason and many more, that anti-meds spammers utterly offend me. I’m not talking about people who happen to disagree with me, but who want to have a genuine conversation. I’m not talking about people who have simply chosen a different path than I have chosen. I am talking about the people who pop up with their helpful “system” that they passive-aggressively throw at you under the disguise of polite conversation…except they’re not really very polite, because it’s like they can’t help themselves and they just throw it at you. They bomb you with a sales pitch, and are rarely interested in any actual conversation at hand. My most un-favorite are the ones that tell you that you can “cure” your “ADHD” with their nutritional supplements. I’m in a nutritional supplementy phase right now actually, so I’m open to the idea…but not to “cure” my “ADHD”. It’s to find out if I might actually have a nutritional deficiency, because I don’t have health insurance and can’t afford a bunch of fancy tests.
People who are not able, for whatever reason, to advocate fully for themselves in a doctor’s office, aren’t any more well-equipped outside of a doctor’s office, but they really want to help their children. Some of them are desperate. Some of them are seeking to heal themselves. And along comes the spammer, preying on desperate, frustrated people, with a “cure”. HERE, they say, TRY OUR SYSTEM!!!!!
And to that, I say: HEY SPAMMER. I’M REPORTING AND BLOCKING YOU. Prey on someone else. No wait, just go away and stop preying on people. If people want to try these methods…that’s their choice. But choosing to do so is just as experimental as dealing with a dismissive doctor and traditional pharmaceutical options. Who are you more likely to trust, your doctor, or some random dude on Twitter saying “here, try my method/system/whatever”. Some people would say they trust the doctor. Some people would say they trust the random dude. Some people would trust neither. Some will simply try anything, and that’s why I feel that both a doctor AND a random-method dude should be holding themselves to higher standards. You don’t dismiss desperate people, doc, who really need your help, and just shove meds at them without full disclosure or even a simple “we don’t totally know what this might do to you”. And random-method dude, the way you prey on desperate people should be illegal. It’s certainly offensive, at least to me.
And patients: Only you can truly advocate for you. No matter what anyone else does or says, it’s up to you to inform yourself as much as you are able, and make the decisions that work for you. If that means you wanna buddy up with the random-method dude, it’s up to you. Personally I’m very comfortable with the fact that both meds I take have been tested on actual humans for a loooooong time. The variety of side-effects for each is well-explored. Methylin is just another form of Ritalin (RITALIN DEATH!!!! OH NOOOOOO! Google that one for entertainment, not for actual information) and nortriptyline is practically famous for giving people weird side-effects (none of which I have experienced…never would have been prescribed this one if the neurologist hadn’t intervened on the migraine issue and specifically recommended trying it, but it works wonders for me and gave me my life back).
I think I’ve pretty much juiced my brain on this topic now–and left nothing behind but a dry, still opinionated, but tired sponge, probably some typos, and no doubt some horrendous punctuation offenses. It’s just hard to fully express yourself in 140 character tidbits on topics that require backstory and explanation, so there you have it, @splinteredmind and @beyondmeds. I don’t have a problem with your messages because I completely respect where you are coming from, and your right to your own beliefs, and your right to choose your treatment plans, and I don’t consider you spammers. Expressing your opinion doesn’t make you a spammer. Bombing other people threads and pages and such with a sales pitch does.