Moral of the story: stop making it hard for people to get help.
In December, when I wrote a blog post called “Why Getting Help For ADHD Is Not ADHD-Friendly,” I had no idea I’d still be struggling to get my meds under control nearly three months later. I feel it’s important to write this follow-up however to further demonstrate how frustrating and complicated it can be to treat ADHD.
Let me start by saying that I don’t think my psychiatric nurse practitioner (“doctor” going forward for brevity) is at fault for any of these issues. Instead, I blame the American healthcare system as a whole and it is my goal in sharing my experience to raise awareness of these problems so that we can take steps toward reform.✨
Finding The One
In part one of this debacle (which I last updated on January 6), I shared my experience with CVS pharmacy and the hoops I have to jump through to obtain my prescription. Since first being diagnosed with ADHD in March and starting and trying several different ADHD medications/dosages in June, I finally feel like I have found the right one (knock on wood).
What has happened over the last few weeks is something I’ve read about in ADHD forums but have been lucky enough to avoid thus far. At the end of the year, my doctor and I decided that I should try a different medication since the one I’d been taking for a few months was causing issues with executive function, specifically my short-term memory and ability to prioritize tasks. Essentially, it was making my ADHD symptoms worse and that was just no good.
So my doctor switched me to extended-release Adderall and OMG, it was a game-changer in the best way. Up until then, all of the meds I’d tried helped to a certain extent but never felt quite right. This one was different. I had virtually zero side effects aside from a dry mouth for the first couple of days and I felt like I could function normally and effectively for the first time in my life.
At my next doctor’s appointment, I expressed my joy and relief at finally finding the right medication. My doctor was just as happy and we planned to follow up one more time and then not again for three months since, after nearly eight months of trying, we’d finally found something that worked — or so we thought.
And Then I Switched Pharmacies
At the end of January, I decided I wanted to switch pharmacies once and for all. As I expressed in part one, CVS had been horrible and I didn’t want to give them my business anymore. I’d heard good things about Walgreens and begun the process of transferring my medications there.
To say my experience obtaining my meds at Walgreens was a million times better than the ones I’ve had at CVS would be an understatement. Where I could never get anyone on the phone at CVS, a Walgreens pharmacist picked up right away to answer my questions. There was no line at the drive-thru when I arrived to pick up my prescriptions when in the past I’ve waited more than 20 minutes in line at CVS. The person at the window was friendly and helpful and not only offered Hudson a treat but gave me a choice of two different kinds. (That point isn’t as relevant, but I will say that the last time CVS gave Hudson a treat (a Beggin’ Strip), he nearly choked on it and I had to pull over to make sure he was OK.)
Overall, filling my prescriptions at Walgreens was much less frustrating an experience and I was so happy I told at least three people about it right away.
Discrepancies Between Drug Manufacturers
The thing that they don’t tell you about ADHD meds (and possibly this is the case with any generic prescription) is that different pharmacies use different brands/manufacturers of generics and the results can look much, much different. As I mentioned above, I’d read about this problem in ADHD forums but up until this past month, hadn’t been affected by it.
In fact, I’ve since learned from speaking to both Walgreens and CVS pharmacies, my doctor, and a pharmacist friend that the brand of pill can change from refill to refill at some pharmacies. CVS told me they have no control over which brand they receive, which seems completely bizarre to me.
On the second day of switching to Walgreens meds, I began to feel more jittery than normal. Up until then, I’d been pretty lucky as far as side effects are concerned. ADHD meds are infamously known to cause jitteriness, insomnia, and lack of appetite and I was fortunate to not really experience any of those side effects. I called the Walgreens pharmacy to ask if the pill was different and the pharmacist told me that it very well could be since Walgreens and CVS don’t use the same manufacturer for prescriptions. He said to give it a few days, that it might just be my body adjusting to the change, and if it didn’t get better, to speak to my doctor. Well, it didn’t get better. In fact, it got much, much worse.
In the three weeks that followed my switch to Walgreens, I became increasingly more anxious than I can remember being in a long time (since before starting antidepressants last March). First thing in the morning, I’d wake up with overwhelming anxiety and dread for the day ahead. All my tasks felt like they needed to be completed all at once even when I had more than enough time to take it slow. I didn’t feel like I had time to do anything like take a shower or eat lunch. Even Jeff noticed a difference. I was disappointed and confused because the same medication had worked so well for me the month before. The only difference was my switch to Walgreens.
At my follow-up appointment with my doctor, I explained what was happening and she shook her head knowingly. She told me to call both pharmacies to inquire about what brands they use for Adderall and explained that, going forward, she would have to specifically request the brand that worked for me. When I called the pharmacies I found out that they do, in fact, use different brands of Adderall.
WHY IS THIS OK?
Why is it OK for what is supposed to be the same dose of the same drug to cause completely different side effects? Why isn’t it regulated? Why is it OK for pharmacies like CVS to change a medication manufacturer from refill to refill without informing the prescriber knowing that it might cause problems? Why is any of this OK? It’s not. It’s beyond unacceptable.
Getting Back on Track
Because ADHD meds are a controlled substance, I had a week before I could switch back to the brand that worked for me. So, my doctor told me to stop taking it since the side effects were causing so much discomfort that she believed going without it for a week would be better for me despite the withdrawal effects and increased ADHD symptoms. She was right. I struggled with even more anxiety for a day or two after stopping but felt much better and more myself after that.
On Tuesday, I returned to CVS to pick up my new prescription, and guess what? The pill changed again! Thankfully, however, I’m feeling much better on this one — more like I did during the first month— and again, I feel like this is definitely the right medication/dose for me.
Yesterday, I called a local, independent pharmacy and the pharmacist assured me that if my doctor specifically requested this brand of Adderall, I would receive it every time so I’m switching. To be honest, I’m happier supporting a local pharmacy anyway; I don’t know what took me so long to make the switch. The most inconvenient thing about my new pharmacy is that it’s 20 minutes away instead of right around the corner but I’d say that’s a small price to pay for my mental wellbeing.
As I said in my last post, I don’t know what the answer is when it comes to reforming the system but I will continue to try to find out to make it easier for me and those like me to get the help we need and deserve. Until then, if you have ADHD or love someone with ADHD and have struggled with your meds, please know you’re not alone and my inbox is always open. Additionally, if you have any experience with this and know what steps I might take to help, please leave a comment below so that others can help as well.
With that, I’m off to do a thousand things, not all at once but slowly and intentionally. So although I’ve complained about ADHD meds in this post, I’d be remiss if I didn’t also express my gratitude for the way they’ve saved my life.
As always, thank you for reading!