27: The one about medication adjustments

Moira finally got a hopeful result about a medication adjustment AFTER TWO YEARS. This episode is about the process she went through, how much effort it took, how we can help each other, and why to not give up. We're worth it. There is also some info from a few doctors about medications too.

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Transcript

Moira Maybin 00:05

I finally got a hopeful result about a medication adjustment. This episode is about the process I went through, and how much effort it took, how we can help each other, and why to not give up, we're worth it. I also have some input from a few doctors about medications too. For the last six months, I've tried to resume more of a regular life. One that is ADHD friendly. And it's clear, I don't have the capacity I used to. I work and there's nothing left, but sheer will, for my own well-being or anything else for that matter. That leaves me exhausted and disappointed. Not wanting to live life this way, or to be a hypocrite. Here's how I'm continuing to put myself on the list. So, I don't have to accept my physical, mental, and quality of life suffered, as I miss out on so much, including any social time with my husband, kids, or friends. Welcome to the ADHD friendly lifestyle. I'm your host, Moira Maybin a woman, mom, educator, and I have late-diagnosed ADHD. This is the place to practice getting rid of guilt or shame and spending more time with our strengths and passions. There are things that I wish I had known about my ADHD sooner that are allowing me to make different decisions to make my life more ADHD friendly, and I want to share them with you. For show notes including next steps, resources, and articles on this topic, visit ADHDfriendlylifestyle.com. 

Moira Maybin 02:17

September 18, 2021, posted on an ADHD message board. “Booster dose with Vyvanse what works for you? I'm trying to start a new prescriber and really want to try a booster dose. I'm currently taking my stimulant every morning at 5 am and a non-stimulant every night. I think this is pretty common but got Hmm. Looks from a family doctor and already tried an unhelpful psychiatrist. No longer for me. Bye-bye. I have long days and my meds were off mid-afternoon. I also have teens with ADHD who come alive at night. So, I need to be able to function. Any insights into how to make this a helpful discussion for my next medication appointment. Thanks in advance.”

 I received many helpful responses received this reply and she shared both her experience , I told my doc about being out driving out of town and meds have long since left the building. In order to drive safely, I need a smaller dose about eight hours after the first one. I find a concrete example help drive the point home, Daniel expressed concern for your ability to sleep at night. Well, my brain needs stimulants to focus. And apparently, I need enough focus to sleep. So, I don't see it as a problem. You could call this a trial run and see how it goes. That way you're going urging that you'll be flexible if it doesn't work the way you hope and expect which often means the resistance. I also speak in terms of effort required to do something. There is a huge personal cost trying to think past our meds. If you can give a concrete example that will help the doc, see what you mean. I've said things like I may be able to summon enough energy for my toenails to get through this long day. But it will leave me exhausted for three days unable to sleep for at least one night and will likely take me much longer to recover than I care to admit. Find a specific concrete example of your own. This is outside the box thinking you can acknowledge that you're asking them to lead the way in this treatment option. Don't be condescending to them, be sincerely appreciative of their stretching beyond what they've been taught. I speak in terms of functionality both in the moment and long-term capacities bring up quality of life issues to why should you be dragging your mind and body through maneuvers with ADHD teens in your care when their meds available that would help you manage the hours of the day that your kids need supervision the most.

Moira Maybin 04:49

My reply to that post. “Thanks a lot. Like you, I go to sleep way easier with medication, otherwise, my brain is running. My non-stimulant has helped with that as it helps with sleep initiation. I hear what you're saying. This week, we've got a school open house for one of our kiddos that will require a 45-minute drive during rush hour involvement from six to 8 pm. And then the same drive-in reverse. I'm dreading it due to what my functioning will be like you've helped a lot.”

Moira Maybin 05:18

Here's some backstory. I did have a family doctor for 20 years for most of my adult life who I really liked, but she didn't have a single adult ADHD patient. When I was diagnosed, I was fortunate to be seen by an outstanding psychiatrist and a leader in the ADHD field. When I was in my first year of ADHD treatment, he retired. Then my family doctor retired, and I sustained a brain injury. When I found a new doctor, the gaslighting and misunderstanding of how my symptoms would show up in her office meant that after two years of trying, we parted ways. So, in a province where due to shortages, 50% of people do not have a Doctor, I have been trying to navigate this on my own. And by navigating, I mean finding practitioners who will work with me. Also, for the last few years, I have struggled with capacity for half the day. I have been trying unsuccessfully for two years to have a medication adjustment. Yesterday, my son had the same thing happen in 15 minutes with his skilled pediatrician do I need to add fear for what will happen when my kids age out of pediatricians to my parenting list? 

I'm sure you are aware of what life has been like for most of us during the last two years. For me, we can add in returning to work full time as a teacher after healing from our brain injury. And then my back telling me that my healing wasn't quite done yet. I had a disc extrusion and a vertebra that had moved into the spinal corridor causing excruciating sciatica. And I kept doing everything on pain meds until my surgery in October of 2020. Since then, I've been healing starting this podcast, as well as ADHD coaching. 

Moira Maybin 06:59

I've seen six doctors about my ADHD in the last two years, too, won't have anything to do with ADHD to wanted to split my stimulant dose. I tried that with the first doctor that just left me undertreated all day. One thought I was doing well enough. And then in mid-September, I had some hope that I could find someone willing to treat me someone who treats ADHD regularly. Email, one month later, I write to the adult ADHD center. Hello, I saw Dr. Blank a month ago, she was going to refer me for a consult regarding the treatment and medication and my ADHD. Can you please advise if you've received the referral and or the timeframe for booking an appointment? Two days later. We have not received your referral. Please contact your doctor's office again. Okay did that. Six days later, our adult Attention Deficit Hyperactivity Disorder Center has received a referral for you to have an ADHD assessment. Please note, due to the high demand for assessments at our adult ADHD Center. We are currently scheduling for 2024. To proceed with this assessment, please complete the attached wealth page assessment form and send it back to us. Same day I respond. Hello. I have an ADHD diagnosis. I have been referred for medication consult as I don't have a prescriber and require a medication adjustment. Please advise. A month later still nothing. So, I turn to Google and message boards again. If there's something somewhere that will help and my meds are running out this last Sunday evening, a stressful weekend with my family. My teenage daughter and I are not getting along well. I yell out in hearing of my husband. I have no one to help me with this. I am running out of meds, and I am on my own. Well, that got my husband's attention. That night. We scheduled a time to talk on Monday about it. When we did excellent all the challenges of moving forward. Having him by my side help me to pull up the website for my latest hope and see this comment reports will have details about management including medication recommendations. These recommendations may then be implemented by the patient's family physician or nurse practitioner. So, no help coming from that corner.

Moira Maybin 09:32

I have a new family doc. We've only talked over the phone. But I was clear about my challenges, frustrations and hopes for our relationship. It seemed promising, but I haven't been able to pick up the phone and make a prescription refill appointment so that Monday my husband did it for me. I had an appointment to speak with her the next day. Now what fingers crossed, she will let me have a trial or consider a referral to someone who will either a not be months to see or be willing to try. appointment day, I review all my medications because ADHD isn't my only medical condition so I can have a list ready for our call. I start to get anxious; I can feel my heart pounding in my chest. I returned to the safe messages from my post back on September 18. booster dose was stimulant what works for you any insight in how to make this a helpful discussion for my next appointment. I'm so glad that I bookmarked printed and copied to my project board, the comments that were helpful, I refer to all three, I start to put together the information I'd like to share with my doctor, hoping I won't be shut down. That'll be heard and understood. Scared to death. I create bullet points trying to be respectful. Bottom line it, create an accurate picture. I interrupt my husband at work and ask him for help on how to start the conversation. My last step is one that is truly me, lover of research and all things ADHD, a pull out a binder with slides from two presentations on medications from last year's 2019 virtual international ADHD conference, I finally get a clearer picture on how the two classes of stimulants work. One increases the amount of dopamine release in our brain, the other slows down the absorption of dopamine. So that is available for us longer. Another piece is that we can evaluate our meds like Goldilocks did. Are they too weak? too short, too slow? Or are they too strong? Too long, too fast? Or are they just right? That was so helpful to be able to separate those three pieces. I'd spent time getting the strength of dose rate, how my medications came on and left me, but no one would discuss with me how short or fast I went through the dose. It's different for everyone. And it's not based on body size or age. It's based on how our brain chemistry works and how much executive function we're trying to use.

Moira Maybin 12:07

There were also some reminders in there that I really needed to hear and read, prepared by an excellent doctor who I know who specializes as an adult human with ADHD, and learning disability who cares for children, teens, and young adults with ADHD. Here are some of the things that helped me from Dr. Carolyn Lentzsch-Parcells. We don't know what will work until we try. Starting medication will likely take time and trial and error. Medication is not a last resort; we should not be waiting for people to be in crisis. Before we start gold standard medical treatment, we need to be preventative. ADHD is not just about work or school, we may be able to compensate to a point, but there's often a cost to our mental and physical health. Stimulant medications, when used properly and under the guidance of a medical provider have a very low risk of dependence or addiction. In addition, treating ADHD decreases the risk of drug abuse. The misconception about stimulant medications causing addiction can make it harder for people that need these medications to get them. Data shows that these medications are largely safe and effective. It's important to note that there are consequences to not treating ADHD. 

Moira Maybin 13:27

So back to earlier today, I had my notes and phone at the ready and nervously was waiting, hoping that this was not going to be another curveball. She phones me on time. And so, I began I'd appreciate the chance to talk to you about what is and isn't working with my ADHD medications. I take a non-stimulant in the evening and a stimulant in the morning, usually between five and 5:30 am. My meds are worn off about the same time every day around 2 pm. Over the last two years, I've tried taking meds later in the day, and that shifts around when I struggle. I've tried splitting my dose and it's lower functioning all day. And I did try adding a non-stimulant with 24-hour coverage that's helped with sleep initiation and transitioning out of bed. But I'm now struggling with the getting out of bed part again. Every day I have about 90 minutes of driving children from school. To drive safely. I do better on my meds. I'm less likely to strategize for less waiting, speed, Miss highway exits, and I'm generally more present. I found that it's a huge personal cost to try think past my meds. If I can get enough energy to get through a typical day, it can leave me exhausted for days and overtired to the point I can't sleep. Earlier this week. I was up at 230 in the morning. I've known since just before the pandemic that an afternoon dose might help. But with my back injury and the pandemic at the same time, my world got very small. Now all My efforts are taken up with dragging my mind and body through half of the day. Can we discuss the meds that are available to help me manage for these hours of the day, the ones that my kids need the most supervision and involvement from me? 

Moira Maybin 15:14

So, my new doctor, she was fantastic. She agreed that where I was referred to was not super helpful with what I was looking for. And she had something that I had never heard about. It turns out, we have a center for brain health within 30 minutes from my home. In my head, I'm already cheering because, you know, I don't just have ADHD, I've had three concussions. And I have reports if they want to know what others have already done. And maybe they can help me make sure I don't have dementia as I age, I am probably getting ahead of myself. But I'm so relieved and excited. And because I do have a powerful brain, I'm listening at the same time as these thoughts are going through my head. And she shares that it's publicly funded. And it does a lot of help with ADHD. They have a variety of services, including nurses and psychiatrists. She asked that she thinks that what I need is some medication adjustments, and she will refer me there because it is a good clinic for the problems I was describing. The last thing she said, the referral will only take a few weeks. So, to keep my phone nearby. I said to her You have made my life and my year. I am realistic. I know it may not work out. But it's a new avenue. And the wait isn't long. And I'm going to take that win for today.

Moira Maybin 16:33

I was ready with things. I didn't have to say if we got around to talking about medication, I was ready. What if there's concern about being on a stimulant while you're trying to go to sleep. I know my brain goes to sleep better on stimulants, it gets way too busy to shut down to sleep. And I can always nap on stimulants. Now, I've been told by my kids' pediatrician who I really trust and respect that it's coming off the stimulants that makes it harder. If she was resistant to talking about it or doing something I was going to ask her if we could consider a trial run and see how it goes. And take some of the advice I had gotten from Dr. Lentzsch-Parcells, we won't know until we try, or I might have worked in, I want to be preventative that was also willing to say if I'm able to compensate over the short term, but there is a cost to my mental and physical health. So, for the long term, I'd like better treatment. I was going to play the mom card. All the self-care I'm trying to do is not only for me, but I’m also trying to model to my kids, that how we feel matters and treatment and care for ADHD doesn't stop at 18. And my new favorite one from today, I don't want to be in a crisis before I can have gold standard medical treatment. 

Moira Maybin 17:52

There were some other helpful things to consider. I got from people on the message boards, who do already have an afternoon boost. One of them was that the key for some is to remember to take the booster before they crash. Or they make a point of taking their top-up dose. If they're driving somewhere significant after work. It was suggested to make note of what we're eating and when we're eating and see how that affects coming off medication. For some if they don't get kind of protein and good fat in the morning. Or if they eat any simple carbs. In the morning, they crash way harder. So generally, it sounds like tracking food, sleep, exercise, and energy level has been really helpful. The things that have helped me over the last two years when my meds don't last long enough in the day, on a day that we must have executive functioning available later in the day. I sometimes take my ADHD meds later. So, it covers that time. Instead, it's hard to start the day that way for me, pre-pandemic and while travelling, I would think about when I needed my medication support the most. Mind you after travelling for 45 years without medication and treatment for my ADHD. Wow, life is so much easier with it than without decompression is a common word in my house. We all know that it means we need to step away from expectations, life activities, and take some time to recoup. One suggestion when out and something was stressful along the way, or they just got tired or whatever they would take a timeout. They invested in Bose noise-cancelling headphones, which I love. And they've been a huge lifesaver. When travelling they can sit in a busy food court put on their noise-cancelling headphones have a cup of something soothing and decompress until they were ready to navigate their way. Some of us use caffeine to help too. We're all different that way. I can't sleep with caffeine anywhere near me, but others use it to help to go to sleep. After connecting with others about needing afternoon boosts, I started trying to see if it would help with later afternoons. It does seem to help a tiny bit better than nothing, I guess. Someone else I know has caffeine in the morning and takes her ADHD meds later. I've learned the hard way that not having strong or long-lasting enough medication means I need to adjust how I live my life by limiting what I take on, commit to, and have a lot more downtime than I really want. But most certainly, I need I tried to make including a nap or at least a rest period daily, so I can manage the regular length of a day. But rarely can I manage a long or full day. I missed that. Finishing up today I'm returning to driving.

Moira Maybin 20:42

I mentioned earlier on that I'm less safe as a driver when unmedicated. My first experience on stimulants was apparent 30 minutes later when I found myself suddenly content to drive, not strategically drive. I also grew up with a dad who could not drive in the car with much going on. This means I'm used to turning off distractions, pausing my own talking or asking others to be quiet when needed to pay more attention in the car. I was reminded how important that is when they shared that they pause in any conversation at every intersection in busy traffic when changing lanes and when seeking directions. Their reasons are for their own and society's well-being taking care while driving. Both slows down the depletion of their self-regulation abilities and honors that their driver's licenses are a privilege. And I want to say thanks for helping to make this a little bit easier for me. The more we make this type of focus saving a part of our day to day, the better equipped we are to deal with anything that comes up especially when we are living life with ADHD and less than optimal treatment.

Moira Maybin 22:07

I hope you've enjoyed today's show and would love to hear your thoughts. To get in touch, you can write me an email at ask@ADHDfriendlylifestyle.com. Connect with me on my website, Instagram and Facebook at ADHD friendly lifestyle or Twitter at ADHDFL. Every episode has a website page with show notes, transcripts, next steps, resources and articles related to the topic. To get these visit ADHDfriendlylifestyle.com. If you'd like to support the podcast, the best way is to subscribe on the podcast player of your choice. And by taking the time to rate and review it there. Here are other podcasts for your listening pleasure. On Hacking your ADHD Will Curb gives Tips Tools and insights. Brenda Mahan hosts ADHD Essentials focusing on parenting and education. Thanks for listening. See you laterAds Intro Outro Thanks for listening. See you later.