Disclaimer: I’m referring the the US medical system, but I imagine people in other countries may encounter similar things.
I cannot be the only one who has had this experience, but all my dealings with the medical industry feel like they were refined by a group of psychologists to exploit the weaknesses of those with ADHD.
The volume of calls, appointments, and paperwork I had to full out to get a diagnosis and prescription for treatment is completely unreasonable to expect someone with poor working memory and attention issues to navigate.
Then, to stay on medication, you need to schedule and make appointments with a psychiatrist every month, for the rest of your life, and if you miss a single one, you will run out of meds (and likely charged a fine), which will make it even harder to remember to make the next one. If you miss too many, that psychiatrist will refuse to see you again and you have to go back to your PCP to get a new referral.
Look, I understand that their time is valuable, but this system couldn’t be designed any other way to be more accommodating to people who clinically forget things?!
It’s like designing a wheelchair ramp that’s actually just stairs that are 3x as steep as the regular stairs. Also, if you fall to the bottom, someone takes your wheelchair until you can climb back up.
This is one of the benefits of being on non-stimulant meds, the hoops to jump through are way less (I still had to fight insurance for a prior auth, which took nearly a month). I use an online Psychiatrist (Talkiatry) and have been really happy with my doctor. I also only need to see him as often as we think is medically necessary since atamoxetine can be refilled. It’s been shown in trials to be as effective as methylphenidate and works well for me so far.
The diagnostic piece though is indeed hard, but I can sort of understand that. It’s a pathway to drugs with a high probability of abuse, and no sure fire way to diagnose. So from a liability and care viewpoint I get why psychologists do due diligence in evaluating people (especially adults) for ADHD. It still sucks if you need help, but in theory you only have to deal with that process once to get a diagnosis. Also, as many people have pointed out, many PCPs are willing to fill scripts for controlled substances if needed, especially once you are on a stable dose that you know works. Like many things, the start up is the hardest and it gets easier once you hit steady state.
I’ve been self medicating for decades with nicotine and THC. It works well for me. I guess I’m lucky.
THC helps a lot in very low doses (20mg or so) but I build a tolerance to it after 2-3 weeks, and also it makes me completely stupid. Its great for getting chores and shit done but terrible for my job. It also makes me really really wordy, which is kind of annoying for everyone involved.
Chances are someone did make it as hard as possible on purpose. US is the source of eugenics…
Shout out to all my spiritual siblings who skip days to stockpile meds because we live in a nightmare world.
Damn. I don’t know where you live but I live in VA and my pcp just refills my prescription every month. We check in via what are basically text mesages and I do telehealth visits every 3 months.
The shit that pisses me off is the 4 week refill time because over the span of several months the refill date and appointment date get out of sync. Just make it so you can’t fill more than three times in 90 days or whatever and it would accomplish the exact same shit but with way more flexibility.
maybe i got lucky, but my psychiatrist is private practice, and she lets me skip every other month and i just text to remind her to fill my meds. she’s great.
oh, and offered to see me quarterly because she is encouraging me to find a therapist and i told her my budget is too tight to add another bill.
…yeah, i think i got lucky.
Germany here. It’s kind of similar here. The system is rigged against us.
My strategy is to use medication to enable me to build a support structure and learn techniques that help with dealing with symptoms. E. g. meditation, physical exercises that help mind-body connection, CBT, routines, etc. So that when I’m without meds, I can fall back on skills I acquired and trained.
What I also do is hoard medication. Ask for a higher dose or more pills, than I actually need. That way I can miss an appointment and still have enough for the next month or so. I even hide pills in different places around my apartment.
Also in Germany, undiagnosed.
There is an ADHD clinic close to me - They sent me a bunch of forms to fill out. Not form-fillable PDFs. They expected me to go to a print shop, print it, fill it out, scan it, and email it back. About 8 months later I ended up just learning how to write texts into PDFs because I kept forgetting and postponing. Now to wait “up to 24 months” for the first appointment, what a joke.
Do it like I did: fail so hard at life that lose your job, lose Bürgergeld welfare, and are in danger of losing your apartment. Have a mental breakdown and go to a psychiatric hospital crisis center.
Do yourself a favor and buy a used brother laser printer. The toner lasts ages and they support universal PCL printer drivers. I bought one new 16 years ago and never bought new toner for it, only paper. It cost less than 100 € back then. Still prints.
Older Brother printers are amazing. I’ve had mine since 2007.
Healthcare shouldn’t be political currency. Healthcare care is an inherently political issue, as each government has to determine the best strategy for them, but like many things in the US politicians see it as just another talking point and something that actually impacts people. This leads to policy being made by people who aren’t knowledgeable about healthcare for people who have strong about healthcare but often aren’t impacted by these policies and don’t have a strong understanding of the topic.
While it would still be a horrible thing to have happen, I’m starting to think that having a bunch of LLMs run/control the government wouldn’t necessarily be worse than what we have now (at least in the US).
Yes.
You guys don’t have repeat prescriptions?
I just order mine on an app when I get a reminder and then pick it up from the chemist a few days later when I get a ping.
Your use of “chemist” makes me think you’re out of the US.
Most ADHD meds in the US are “controlled substances” and that means our doctors can only prescribe up to three months at a time. After three months we have to have a follow-up appointment, then they can prescribe three more months of meds.
Plus the federal government decided that too many people were taking medications like Adderall. So their “solution” was to instate a cap on how much Adderall manufacturers can make. Which means there’s now a national shortage of Adderall. And that shortage means folks with ADHD are frequently going without their meds entirely or are forced to call multiple pharmacies in the area to ask who has their meds in stock. (My health insurance through work requires me to use a mail-order pharmacy because it means cost savings for them. But that means I don’t have the luxury of shopping around different stores to see who has my meds in stock - at least, not to fill the prescription through insurance and get the lower price. So if the mail order place is out, then I’m screwed.)
Our healthcare system is so fucked.
Adhd meds here are controlled substances too. It makes it so the prescription lasts only a month. But how many packs of meds you have on this prescription, is only set by your doctor. So I get 4 months refills and have to buy it within one month.
And yeah, med shortage over here is an issue too.
Yeah, the DEA wouldn’t allow that. Where I’m at in the US you can only get one month at a time, and most people have to go to the doctors office in person to pick up a physical prescription.
You only have a 3-4 day window before your pills run out to do this, too, so if your pharmacy is out, you’re fucked because most pharmacies won’t just fill a control if you don’t have other prescriptions with them (if they’re accepting new controls at all). All because they’re afraid of the DEA.
I’ve often day dreamed about starting a class action lawsuit against the DEA for discriminating against the disabled.
Anyone that might be thinking this is an exaggeration, it is not.
My wife has adhd and takes vyvanse for it, a strictly controlled substance. I have to be extremely vigilant about making sure her prescription gets to the pharmacy and that the pharmacy fills it correctly.
We recently moved across country. Here’s a fun puzzle to work on.
- You can not get more than a 30 day supply of the drug
- Due to lack of providers, you can not get an in state prescription for more than 30 days
- while it is perfectly legal to fill the out of state prescription, every large pharmacy that can get vyvanse has a corporate policy against filling out of state prescriptions for it
- smaller pharmacies are willing to fill the prescription, but can’t stock the medicine.
The amount of times I had to explain this to people and just exasperatedly go “so should I just prepare my wife to go through withdrawal of this medication she has been prescribed and taking for nearly a half a decade? Is that ok with you, is that an ok patient outcome? Is that what you’d let happen to your wife”
Luckily shes married to an angry, persistent, yet very polite man who will shame the shit out of people until he gets it fixed. But I have no idea how she was supposed to navigate this alone, while facing the terror of withdrawal.
How did you manage that? I’ve been worried about moving out of state for this reason (not that I have immediate plans, but I’ve thought about it).
It took a lot of persistence and luck. I had found my wife a new doctor to do her medication management and I ended up just politely hounding her staff explaining calmly but firmly the catch-22 I found myself in.
The trick I’ve learned over caring for my chronically ill wife, who I love with all my heart, is to be very nice to the front line medical people but to never give up. They take crap all day from angry people, so I make it my mission to never yell at them, never get cross with them. I just explain what’s going on and my goal is always to get them on my side, be my person on the inside.
That worked here too. After calling a couple times and being nice, one person working the phone remembered me and I could tell they wanted to help. I just kept asking them for options, people like it when they can be part of solving the problem. They got in the doctors ear about this and suddenly if she did a virtual evaluation of my wife she could write a preliminary prescription to fill the gap.
Is this how things should work? No. Should you have to beg and cajole and get lucky that someone will help you? Absolutely not. But this is how I’ve figured out how to navigate this broken system.
Tl;Dr - Be very nice to office staff, be persistent, make it a problem you can solve together, keep reminding them that you are advocating for a flesh and blood human being you care about and that them just suffering will never be a good enough answer.
Also don’t get frustrated if you don’t make progress and need to call back, I think it only took calling 3 days in a row for them to figure out they better help me or they were going to have to talk to me every single day
I have to go in every year to get refills on my epi pens and my migraine meds. I have to have a doctor sign off on those and I don’t really know why. I am not on ADHD meds but I imagine that would be the same.
It’s every 6 months for controls.
Oh yeah… I should probably refill my epipens…
My old doctor used to require monthly check-ins to get my ADHD meds.
Usa person, i canget auto refills on meds never tried with adhd meds though. The ones that have auro refill have a final refill date and max refill number.
Like the person above said, I’ve only ever had them do that three months at a time, but it’s better than monthly, which is how I started.
I have difficulty believing that the DEA allows a 90 day supply of stimulants.
On December 19, 2007, a DEA regulation came into effect that allows a prescriber to issue multiple prescriptions authorizing an individual patient to receive a total of up to a 90-day supply of a Schedule II controlled substance.2 However, this is allowable only under the following conditions:
There are some restrictions, but it’s a thing. It looks like it can depend on state. In my case, I believe they did it every month, but I only had to visit the office once every three months, the two after that were just called in/you could fill out a website form if you had any issue. But that likely counted as “three prescriptions,” rather than “a single 90-day prescription,” to your point. The main thing for me was not having to get away from work and into a doctor’s office every single month only for her to say, “Alright! See you next month!” as she charged me more than the insurance allowed to fund her (literal) new Corvette parked out front.
Shoutout to ADHDcentral. They tried to make the process as clear and accessible as possible. With automated reminders.
What is this? I searched this in Brave search and got like no relevant results.
I’m curious as well. This is the closest relevant result I got, sadly it is for The Netherlands.
My anxiety, depression, and executive dysfunction prevent me from talking to a therapist and getting a diagnosis. I am so sick of this…
You really don’t need a therapist. You just need a GP that’ll do the questionnaire.
CBD gummies have worked miracles for my depression and anxiety. Depending on where you live, maybe give it a try for a week or two and see what happens?
What dosage are you taking, when, and what type?
These guys work really well.
https://wyldcbd.com/products/raspberry-gummies
They have different flavors, and for me the peach ones work really well
This is the state of U.S. healthcare, homie just prescribed peach flavoring.
I know this is accurate because I also live in this hellhole.
It’s great, isn’t it? I also got laid off at the end of January, lost my health insurance immediately so I had to cancel my gallbladder removal for the next week because I could no longer afford it.
ThE pRiVaTe MaRkEt WiLl SoLvE tHe PrObLeM
Just hold your breath, it will trickle down any second
I started with a 300mg per bag of 20 (so each gummy would be 20mg each). I would take one a night for a week, every other week (I’d stay sober when with my kids). After a couple of 300, I moved up to 2000 (100mg/gummy).
What brand?
3CHI Gummies
The 2000 is called Pulse. I forget what the 300 was called.
As someone with unmedicated ADHD and a severe heart condition, I feel this rant deep, deep in my soul but more for my heart stuff.
You mean I have to call for follow ups every three months and also remember to fill my multiple medications every month or else I am sent on a death spiral? And you also mean to tell me that I can’t take any of the typical ADHD drugs because it might hurt my heart?
Win win.
