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Comment by ryanklee | Hacker News Reader

I'm hesitant to make any assumptions about your decision to not medicate, but if it has anything to do with addictive properties, you should look into guanfacine. I have very severe ADHD and was unable to use the common medications for the reason listed. This last year I stumbled upon guanfacine, which is usually a blood pressure reduction med, but is prescribed off-label as an ADHD med. It has no noticeable effects other than having basically been a miracle for me in its reduction of my ADHD symptoms. No addictive properties. YMMV but it changed my life after 41 years of struggling with ADHD.

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> but is prescribed off-label as an ADHD med

Guanfacine is approved to treat ADHD in the United States and several other countries.

Technically, extended-release Guanfacine is approved because that's what was used in the trials. The brand name is Intuniv and the generic is Guanfacine ER.

The generic guanfacine (non-ER) can also be used, though technically off label. The only difference is that it must be dosed twice a day instead of once a day and the absorption is different so you can't do a 1:1 translation of your dose to the ER.

Now that Guanfacine ER is generic and cheap, you might want to consider it for once daily dosing.

The non-stimulant medications are very good, but require some patience to get started with. Too many people give up in the first week or month because the side effects haven't settled yet. Straterra (Atomoxetine) is another one that can take 1-2 months for good efficacy. Clinical trials show the positive effects continue to build over the course of a year. Surprisingly, Atomoxetine has a lower relapse rate after discontinuation too, suggesting it might be making some long-term positive changes to the brain. This is a nice contrast to stimulants, where the patient becomes essentially dependent on the medication and can go through a protracted rebound if they ever have to discontinue.

Can Guanfacine be taken pro re nata like stimulants? If so, how long is the duration on average?

One reason I have never considered the blood pressure medications is because, and correct me if I am wrong, if one takes them too consistently for too long, then sudden cessation can be dangerous and/or deadly.

> The non-stimulant medications are very good

Define very good. From what I have gathered during my browsing of research papers of varying quality, it seems that that non-stimulant options are perhaps at the level of "better than nothing."

If I remember correctly, those who do well on MPH tend to do better on Atomoxetine, but even then, it's no guarantee. I've also read plenty of anecdotal evidence from people using Atomoxetine, and it seems like a large majority either cannot even make it past a few weeks due to intolerable side-effects.

Also, the wikipedia page for Atomoxetine is not very reassuring with the statement:

A 2020 meta-analysis found that atomoxetine was associated with anorexia, weight loss, and hypertension, rating it as a "potentially least preferred agent based on safety" for treating ADHD.

What I really want to see if more head-to-head drug trials with all these medications and non-pharmaceutical alternatives.

For example, how much more effective on average are stimulants than non-stimulants? Are things like caffeine, nicotine, or both combined more effective than non-stimulants? What about compared to stimulants?

All I can ever find is research supporting if a medication is successful in reducing symptoms compared to a placebo. I just want to see them all ranked against themselves. Of course, I understand individual experiences would vary wildly, but I do think there is a potential for some utility in this data.

I’m on guanfacine and I’ve ceased it several times without issue. (Due to running out) It’s discouraged but my understanding from researching it is that’s more as a precaution. The bp drop from ceasing is rarely dangerous.

I can't take stimulants for many reasons, but mostly they just make me a miserable A-hole to live with so I tried Atomoxetine/Strattera which worked for a few months and then my anxiety went from 0-1000.

Even getting in a small argument with my kids would increase my heart rate and blood pressure to unsafe levels. However, it did help me focus and pay attention, it also helped me kick my Marijuana habit (Legal state) which looking back just fueled my ADHD symptoms. It was also being used as a crutch to avoid dealing with my emotions and problems in life which just added to my anxiety.

Going back to the studies, another issue is that these medications can vary wildly from person to person based upon our own perceptions, experiences, and other comorbidities combined.

It really does vary wildly from person-to-person. I know folks for whom atomoxetine did wonders, but 4 months on it for me had almost no improvements in my symptoms but a bunch of minor side effects.

Like lots of medications, you really do just have to try out several until something works well with your particular body.

Started on atomoxetine in February - I was 47 - the difference it has made with regards to staying on task, and short term memory is staggering. Doesn't really help with motivation though, sadly.

I wasn't aware of the long term positive changes, perhaps this is what my psych should have said instead of giving me an analogy of floating down a river and wanting me to carry on down that same stream without the meds...

I was previously on Guanfacine in combination with Adderall for my blood pressure so I don't have experience taking it solely. I did learn I cannot take stimulants at all, it takes my anxiety to 1000 and makes me a complete a-hole around my house which helps nobody.

Can you elaborate which ADHD symptoms it has helped the most? I'm currently not taking any meds but I can't focus or concentrate to save my life which makes a demanding IT job difficult at times.

Symptoms alleviated considerably: task avoidance, distractibility, hyper-fixation, reactivity, perseveration.

I had already achieved quite a lot in the way of symptom management through cognitive behavioral tools and physical exercise, but consistent application of tools and discipline broadly are exactly what ADHDrs often struggle with. Clearly, it's problematic to rely on a treatment for unreliability which is itself unreliable. So good results, but inconsistent.

The guanfacine has been much more stably effective at reducing the general baseline tendencies. For me, like I said, it was a miracle, since like you, but for a different reason, I can't take simulants.

Are you able to hyper-fixate on things you need to get completed? I rely on that heavily in my life. Without, I am as good as useless.

I've noticed that stimulants can make me hyper-fixate, which often times, can be very beneficial. I relied on hyperfocus prior to being medicated, and it seems like medication is just a on switch for hyperfocusing. At least, some of the time...

Hyper-fixation is good only when you fixate on something that is necessary. My hyper-fixation is always on some side project.

How effective was it on your blood pressure? I'm currently on Modafinil and it's been a life-changer but it doesn't help with some of the killer symptoms of ADHD that still plague me (like task avoidance, distractibility, task completion, time management, planning, consistency, etc.). But I was recently diagnosed with hypertension so need to deal with that. I'm worried the GP will say that I need to discontinue the Modafinil as it's not recommended for people with cardiovascular issues. But maybe with guanfacine it might balance out?

It seemed effective in my case and brought my blood pressure down to the normal 120/80 range from my default of ~140/95.

Did you have any weight gain or sleepiness/fatigue issues?

As someone in the spectrum with Demand Avoidance, guanfacine has been a godsend. It's cheap, not controlled, and for me, it works better than any stimulant in regulating my attention.

I have not tried guanfacine.

My problems are loss of appetite, trouble sleeping (leading to sleep deprivation that itself causes loss of executive control), and irritability. This is in addition to the fact that I have high blood pressure, and would rather not have to increase the cocktail of medications that I'm taking for that.

You might already be taking it if you have high blood pressure, potentially under a branded name. One of the things it's used for is high blood pressure, and due to not being a stimulant and also not being FDA approved for ADHD adults specifically (only children for now), doctors are far more likely to prescribe it under the high blood pressure umbrella for adults.

Believe one of the brands is called Intuniv.

It isn't in my current list, but I saw that. And find this fact interesting. If it can potentially replace another medication, that would be nice.]

It certainly seems better for me than a stimulant.

> No addictive properties.

This needs more context, because unlike stimulants, you can't quit guanfacine instantly or you'll feel pretty ill. You have to taper off it for a week or two.

Also, you can't drink on it (enjoyably) and it made me feel tired and emotional.

Also, anytime I told a doctor what medications I was taking they'd think I said "guaifenesin" and write it down wrong.

There are many more offlabel meds for ADHD eg Bupropion. Daniel Amen gives tailored recommendations for meds and supplements for each type in his book Healing ADD. There is one type he called Ring Of Fire, which can only be helped without meds. Highly recommended!

https://www.amazon.com/dp/0425269973

https://www.youtube.com/watch?v=UWnJ4wjVu9k

Ring of fire is BS and exists to marginalize certain people with ADHD in order to consider them a lost cause. Bupropion is not effective for ADHD.

Just want to warn people here. Follow-up warning: Don't trust psychs. Much like cops they're actively trying to ruin your life.

With such a vague warning you might want to add more context or references before making those claims. While it may be your opinion or experience that "Psychs are actively trying to ruin your life", those kinds of statements can also deter people who need actual medical help from seeking said help.

Directing people by default, especially ones with ADHD, is equally dangerous. People need to understand the threat to them.

"ADHD types" as I understand, are pretty controversial. If you're going to say that one "type" should not get medicine for a morbid condition, you should have a good reason.

What happens is a substantial percentage of people with ADHD get hurt by a system that uses them, chews them up, and spits them out with nothing, after taking every cent they have. Often times, we die from associated conditions, so it just gets swept under the rug. The industry isn't exactly searching for answers here, so their death is in vein, which infuriates me.

This is a known problem that I'm talking about, because I want it to change. Healthcare for people with ADHD is openly bigoted, degrading, and often harmful.

I'm astonished that despite all the news, conditions for people with ADHD are as bad as ever, and maybe getting worse. I think there's an interesting link to the trans community as well, since some of the psych issue overlap.

It may seem that trans have it better than ever, but they're up against whole armies now. There may be acceptance now, but I can imagine it being even harder to lay low. Mental health is less taboo, but people with ADHD are increasingly being marginalized, told to just give up on their aspirations, and accept life being disabled.

I have an entire rant about how ADHD kids are abused by the public school system.

The worst idea ever is assigning them "monitors". The kid is in a classroom that goes too slow to hold their interest. And there is an adult whose job is to torture them with reminders to return to task every time they get distracted. Guess how well this works? And yet it is a standard IEP intervention used across the country!

For less than the cost of adding the monitor, you could move the same kid into an environment where they can learn at their own pace. Thereby saving money, having the child learn faster, and removing a major source of disruptions for the rest of the class. But we've literally passed a law mandating "mainstreaming", which makes the common-sense and effective intervention illegal unless the parent pays for it out of pocket.

But that is a rant for another day.

Having a child myself with an IEP I absolutely agree with how utterly useless it is and how horribly the system works in practice. It's even worse nowadays as accountability has been completely removed from students and parents leaving the teachers to fend for themselves without help from the administration that collects fat paychecks.

Eat the rich I say, then we can start solving some of societies problems. Until then we are all just walking dollar signs, I imagine ADHD is particularly profitable to companies due to our impulse purchases and lack of executive function.

Yes, I've been thinking for quite some time of the many creative ways the condition is exploited by society. From social media to credit, advertising, social engineering, and psychological tricks.

Great fodder for the criminal industrial complex too.

Thank you for taking the time to respond and expand. I totally agree with the context you provided as you also see these same types of systems gobbling up many minority groups for profit or puritanical religious reasons.

In my personal experience, my current behavior health provider (which is not a psych) has been very interested in trying to find whatever works to help me get along in this world, be it medication or not. Maybe I got lucky there.

I've always been gotten the impression that ADHD is just another hurdle in my life and that I just have to work harder than more neurotypical people to achieve the same results.

I am curious to know about what age range you are in as I wonder if this is also a generational / parenting difference? I am almost 40 myself and see many hurdles and issues that my kids are facing nowadays which I can't even imagine sometimes.

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