10: The one about medication

We cover a lot here--why medications are a pillar of successful treatment, and no longer a last resort, how to figure out if ADHD medications are working for you,  when to consider a non-stimulant, and what to expect with side effects. Plus, 2 tools can be used in the diagnosis, treatment, and monitoring of ADHD. For my fellow monthly cyclers, there’s some help with our individual monthly experiences, week by week, to make informed decisions for our health and well-being.
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Transcript

 Moira Maybin  00:05

Today has something for everyone. Why medications are now considered a pillar of successful treatment and not a last resort. We talked about how to figure out if ADHD medications are working, what to expect the side effects and tools that can be used in diagnosis, treatment, and monitoring of ADHD. For my fellow monthly cyclers learning what our individual monthly experiences are, week by week, is central to being able to make informed decisions for our health and well-being at ADHDfriendlylifestyle.com. Our resources are mentioned and used in this episode. Didn't hear last week's episode that goes more in-depth about hormones and ADHD. Go back and listen to episode nine first. 

Welcome to the ADHD friendly lifestyle, the place to practice putting on our own oxygen mask so we can breathe and make it possible to show up in our own lives without guilt or shame. I'm your host, Moira Maybin a woman mom, educator, and I have late-diagnosed ADHD. Join me as we dive into the stories, adventures and mishaps, all while trying to make sense of the published research that could make your tomorrow a more ADHD friendly day. There are things that I wish I had known about my ADHD sooner and I want to share them with you. We are in this together and I am so excited that in upcoming episodes, I will be joined by others who are also creating an ADHD friendly lifestyle. We are going to be answering listener questions and maybe even poke some fun at our ADHD. If you have questions or ideas for me, you can share them at ADHDfriendlylifestyle.com. While you were there, subscribe to the podcast and sign up for emails to get every episode delivered to your inbox and be the first to hear what is going on. 

Moira Maybin  02:20

The changing nature of ADHD symptoms is a direct result of hormonal fluctuations during our monthly cycle. You are not losing your mind that feeling like you're trying to dance on a moving floor. That's it. The previous episode explained how and when this happens monthly and over our life. So if you haven't heard episode nine yet, pause here and go back. Even if you don't have a monthly cycle, you know, people who do and they need to know this. Even without ADHD. Having a cycle can actually help us unravel this challenge. We are able to become aware of and plan for this variability because it is cyclical. We can learn the timing, signs and symptoms of what our brain and body are showing us. Hey, this is what my ADHD is like when I'm here in my cycle. Honestly, doing that this week helped me figure out I had a bit of a cluster in my pill management and had by accident put myself into withdrawal with one of my medications. I was still taking the same number of pills, which is how I missed it for almost 10 days and was feeling worse by the day. Knowing what I usually feel like at that point in my cycle, and being curious instead of judgmental or brushing it off, I was able to consider other options, than something was wrong with me. And voila, massive blunder revealed in my pillbox, such a relief that the wheels weren't actually coming off the bus. I just needed my meds and to not by accident go cold turkey on it either. Now, a few days later, I can feel that improvement already. I suspect I'm not the only one in the room who has glitches like this. What to make it easier to notice and monitor what we experience. Even if we can decide on something we like and sort out a way to remember, can the actual system be ADHD friendly, especially when chart tracking and logging can be somewhat triggering for me, you will not find a sticker chart in this teacher's classroom. 

Moira Maybin  08:12

Before we get to the how it helps to have strong reasons why we are doing this. To get off the hamster wheel might be a good reason to care for others might work for someone else. Maybe you don't know what else to try, but nothing else has worked so far. depends on where you are on the optimism to pessimism barometer is today. And that largely depends on the state of your hormones. So come on, let's do this experiment. Can it get any worse? What if it gets better? Now that I know that my body and your body can be very different in what happens each day, and that affects my moods, medications, everything. I am both curious, and kind of pissed off that this is in common knowledge. This is an important and ongoing process to find my patterns in both my cycle and ADHD. I look back on the last 15 to 20 years especially. And I don't want the next ones to be so hard. 

Moira Maybin  09:06

To increase the chances that I will actually do any of this. I have set up an auto-repeat in my daily calendar, the phase I am in, it reminds me that this is important to my well-being and honestly seeing it every day helps. If you are someone who wants to track both your menstrual cycle and your ADHD over the course of a month or two, maybe up to three, you will probably find duplication in the process and information you're gathering for your ADHD or for your cycle. But as you get to know your own monthly cycle, you will be able to eliminate the things that aren't part of your experience, which will help you increase awareness of the ones that are to track our menstrual cycles. There are a few apps that make it easier, including clue and flow. They will even remind us to do the tracking. But yeah, even with my watch phone and calendar reminding me I can put it off. I've used the period tracker on my Apple Health app, and it's been good But when we stop using a tool, sometimes a quick change out re-engages us. For me, I also need a daily task and my digital schedule as well. Something I will have to click on as being done to get me to do the thing. I just love crossing things off a list. If we miss a day or two, it's no big deal. We're looking for trends over time. If we, do it for a few months, some might develop an internal awareness within need the external trackers less. I find when I stopped doing this sort of stuff, it falls off my radar completely. So, I'll need to keep some sort of tracking and regular rotation. I originally started as a paper and pencil person, and there are printable charts online that I will link to in the show notes. One thing that I'm going to start again is taking my temperature each morning before I get out of bed. basal body temperature is a piece of learning how to recognize when Ovulation occurs, my cycle is becoming more irregular. And the part that changes is when I ovulate. Each of us typically stays consistent. And the number of days between ovulation and menstruation. Knowing when I ovulate could really help because I increase my stimulant medication mid-cycle. And right now, I do that on day 14. And it's a bit of a guess. In the months I have a short cycle, I could be unnecessarily struggling. As my hormone levels change. There are a few ways to figure this out. You can use an ovulation predictor kit, learn more about the fertility awareness method. And there are many other sites and books that cover this. As we know now, we're all individuals. So any tool that generalizes like an online calculator may not be as accurate as we need it to be. The important piece is building awareness about how you were feeling and thinking in addition to your body signals. I used to have this knowledge about myself, and we could begin to feel transitions from one phase to another. Now I just need to remember to find and then put a thermometer on my nightstand.

Moira Maybin  12:01

One important piece towards the more ADHD and hormone-friendly treatment plan is underway when we have more details about our cycle. Now we need a way to check in on our ADHD and how any medications are working. There's a good reason I'm bringing up medication today. Well, hormonal regulation is also affected by several factors like our environment, physiology, thoughts, behavior and emotions which I will be talking about in the next few episodes. The most important treatment consideration is medication. It used to be believed that medication was a last resort. We now know that treatment works best when combined with medication. ADHD is fundamentally a problem in neurochemistry. And the most effective treatment is to improve this with medications. stimulant medications work for 80% of people, and are among the most research-tested, understood and have a very high success rate, especially when compared to medications for other cognitive and mood conditions. There are some risks with any medication. There are also very significant risks to having ADHD without medications, the biggest one has reduced life expectancy of up to 13 years. I think we all know the damage to our sense of self to how effective stimulant medication can be is directly linked to where we are in our monthly menstrual cycle. stimulant medications are impacted by hormone levels and are less effective post-ovulation, stress, depression and lack of sleep also seem to reduce the effectiveness of stimulant medication for anyone with ADHD. If we start a medication without knowing the factors, or where we are in our cycle, we've been given a near-impossible task of trying to determine how effective the medication is. If you start medication in the second half of your cycle, it may feel good, but in the first half, you may feel overmedicated. The other way around is true too. If you start medication in the first half and decide it works well. That's when we have the experience. We know we took our meds but feel like they aren't working. To be able to evaluate the benefits and possible side effects. We need to know what to expect and where we are in our cycle. Some teens and adults with menstrual cycles might require increasing doses in the second half or near the end of their cycle and continuing into menstruation until estrogen levels have increased again, how do we sorted out I'm guessing simple and easy might be the way to go. Two rating scales have been game-changers. And all you have to do is tick the box. We have to do this because most clinicians don't know about or understand the impact of hormones on ADHD. And we have to be able to share guides and take an active role in our health and treatment until this becomes more common knowledge. I take my hat off to any clinicians listening to this and thank you for the work you were doing. If you have any ideas on how we can help each other with this, I'd love to hear from you. One tool that is helping is The West self-report scale for ADHD that can be used a few different ways. My family uses it every month or so when someone has a medical appointment, or we need an overview how one of us is doing, I find it's bonus value is helping us identify what are the areas that are going well. And at the beginning, it helped us learn what symptoms we may not realize we have. With treatment and support, we are looking to bring down both the number and severity of symptoms. Another way we can use it is to help get an idea of how our ADHD changes during the monthly cycle. Take a few minutes once a week for a few months to tick the boxes of what your week with ADHD has been like, and you'll be able to see how your symptoms change regularly, we can use them for our own knowledge, but they are also validated scales that we can take to our doctors or teachers for our kids. Even better, they don't have the gender bias that other scales have and can help diagnose and treatment with a snapshot of our minstrel and ADHD symptoms over the four monthly phases. The next piece is being able to know and evaluate any side effects of ADHD medication using another simple and easy rating scale that can be shared with our health team. It too is a one-pager, that list of side effects that you took off, you could do this weekly to where I might do it at the beginning of the month, and then check it off once a week to update it. If there are any changes. You'll find these links in the show notes for today's episode at ADHDfriendlylifestyle.com.

Moira Maybin  16:33

Now what to do with this information, I'm very conscious of the fact that I'm not a doctor and you need to determine your healthcare treatment with your medical team. The problem is, is if no one has this information we can be suffering unnecessarily. I have learned so much in this area from Dr. William Dodson, a leading expert in ADHD. He advocates that with a number of different stimulant options and other choices in medication for ADHD, that the goal is to be free of both impairments and side effects. I recently heard another podcaster speaking about diabetes, about why in conditions like ADHD and diabetes if something isn't working well often the first go-to is that it has something to do with what we can change or do to improve this medical situation. If I had broken my arm would treatment be based on how long I could keep my arm in a certain position? Would that be acceptable as the first line of treatment? How about if I had strep throat and the antibiotics weren't really effective? What would we expect to try different or stronger medication? How is this any different? It's just not. When we're feeling down and out. It's hard to advocate for ourselves. These tools can help us evaluate the effectiveness and side effects of our medications make it easier to be clear about what is and isn't working in a way that can be used with our healthcare team. Dr. Dodson also cautions against another common situation, the under medication of adults due to hesitancy with determining what an individual's optimal doses. Most stimulant medications are not based on size and weight like many other medications, it is also individual based on the rate at which our brain uses the medication. He shared a story once about a nurse who was given a promotion and felt like a failure because she wasn't able to keep up with the increased demands she was now facing at work. Being in a relationship having a child. He clarified with her that as the demands on her executive functions increased. So too with the rate she used up her medication, some call that the burn rate. Once you tried a higher dosage of medication, she felt like herself again and was more able to manage those increased demand. Our individual burn rate is why some of us need top-up doses to if we don't try to learn what our optimal dosage is, through trials, we risk our health and maybe even returning to that familiar sense of hopelessness and frustration when we think that the thing that works for others doesn't work for us. What concerns me is if we don't get the opportunity to find our optimal dose, we and our prescribers are not gathering all the information to make an informed decision. We need to know how high of a dose we can tolerate the rate of a successful response stimulant medication increases with higher doses. This means a medication we may decide as a lower dose doesn't work is more likely to at a higher dose. If you don't know if you're getting your optimal benefit from your medication and have little or no side effects. Dr. Dodson and other prescribers recommend trials of increasingly higher doses until the side effects outweigh the benefits. That's really it. increase the dose until drawbacks outweigh benefits. We don't need long on these medications to learn this information. My prescriber had me try each dose for a week when it did get too high. I knew fairly quickly and stayed on it for about three days to confirm that I returned To my previous dosage level, I had questions I learned to ask. And today I asked one of my children's doctors about an increase in a non-stimulant. What can we expect if the dosage is too high? Is there a concern or problem if it is too high? What do we do then? Every time I've asked those questions, the answers have been ones that are low risk and tolerable to gather the information about what optimal doses are. In my trials. Each week, I completed both scales myself report and medication scale, and we reviewed them together and chose based on that. I wasn't tracking my cycle at that point and soon realized that some days, it didn't feel like my medication was working. Once I had my cycle information, we worked through the different options I overviewed. In Episode Three, the first one about hormones and landed on both staying on SSRIs through menopause and increasing my dose to the next higher dosage for the second half of my cycle. For the many of us with PMDD, there are some recommendations that can help alleviate those symptoms to these include continuous contraceptives with no stop week, especially for physical symptoms SSRIs for mood, and temper higher doses of ADHD stimulant medications. With taking stimulant medications, some will need to have their blood pressure evaluated first or be cleared by their cardiologist. Those with certain heart defects are not able to take stimulant medications. In any instance of concerns of heart conditions or medication. Dr. Sarah binder recommends having a consultation between those very familiar with ADHD and your medical condition to make a decision based on your own health care.

Moira Maybin  21:39

Have you discussed the role of non-stimulants in your treatment plan? stimulant medication helps us put the pieces related to directing our attention leaves many hyperarousal impairments untreated, like hyperactivity and impulsivity. Unless the stimulant gets to the overdosage aka zombie syndrome, I'm thankful I haven't seen a child like that since the 1990s. If you or anyone you know with ADHD can't get sleep due to a busy brain or body stimulants have also been shown to commonly fail to shut off physical and mental arousal at that time, alpha agonists or non-stimulants and help deliver a complete response. Along with stimulants. I was thrilled to hear my children's pediatrician explained that stimulant medication only partially treats ADHD. For all of us having that 24-hour coverage and taking them at night to help with sleep initiation. Her re has been a total life changer. It helps with emotional regulation. So in my family, it means there's been an increase in flexibility and thinking, a massive reduction in being annoyed by those around you. And an increase in frustration tolerance. And the one that I love is my mouth is far less likely to get me into trouble. And when I am emotional and less likely to put my foot in for the 20% of children and 15% of teens and adults who cannot tolerate a stimulant. This may be an option. As Dr. Dodson has said, fortunately, many of us don't have to choose. The benefits of ADHD medications are addictive. And many people take two medications from different classes. It is so common that they are FDA approved for use together. The limitation is in that the side effects are additive to my main side effect is dry mouth. And each time I go to the dentist, I'm learning different things to try. So I don't put my dental health at risk. Dr. Dodson has come up with four basic questions to determine who should be considered for a trial of an alpha agonist. I will list them in my show notes. One thing to note, there are two alpha agonists guanfacine and clonidine, and there's only a 30% response rate to each vindication, but it is a different 30%. So, if one doesn't work for you, the other might. The benefits include life-changers, like feeling at peace not flooded with thoughts, emotional armor, one thought at a time, and my family's personal contribution, no more raging arguments. Using the scales of our symptoms, and the side effects are helpful for all of us. When we meet with healthcare providers, we are asked how things are going for us. And we can only think of how we are now not last week or a month ago. Or we don't always know what to look for. And often, quite honestly, they don't either. My family doctor told me that after 27 years of practicing, I was her first adult patient with ADHD and within a month, I knew she had two more and they weren't even related to me. The sad part is how many people are missed because people just don't know. This is why we have to have the knowledge to help ourselves and to help others. I know from that day on, my doctor looked more closely at patients like me who seemed superficially Have it together. yet we're clearly suffering internally, physically and mentally. And the treatment given wasn't working. If at any time during my eight years on medications for depression and anxiety, anyone had heard that I was still overwhelmed, exhausted, and at my wit's end, and they knew the tiniest bit about ADHD and women, the bells would have gone off.

Moira Maybin  25:28

When we are dealing with medications and hormones, finding a good health care provider who will listen to us find treatment options and are willing to educate themselves to will determine what our life will be like. We need support and help to manage this life with ADHD, to develop habits to make this work for us. And to be able to communicate all of this with prescribers, and other health care providers is key. A few other things to consider before we end this episode around, making consistency and taking medications easier. I learned this month not to refill my pill containers when it's beginning of caring week. Or if I do have someone else check that they are correct. And yes, I do weekly morning and evening pill containers. That way I know if me or my kids haven't taken our meds, it's helped so many times. The other thing we have shout out to my buddy Dan for turning me on to this micro pill containers that go on our key chains or backpacks that have an emergency dose in case we forget and are already off for the day. Some people like keeping their medications in multiple locations. Others have multiple reminders to take them. I leave a small glass of water out. And it reminds me to do that first thing in the morning. Other people like to have it beside their bed, an alarm goes off, they take it and go back to sleep. When the next alarm goes off. 30 minutes later, they find it easier as the medication is already kicking in. I forgot that vitamin C and stimulants also don't mix. It lowers the effectiveness of the stimulant, and we were giving our kids their medications with vitamins. Now we switch to vitamins at dinnertime. No one remembers the vitamins, but they do seem to be managing life more easily. Sorry, kids. A few other questions that I will list in the show notes too. How long do your meds work for you? pre-COVID, I realized that about 4 pm mine was done. And my life wasn't. So, I wanted to find something to top up to the end of the day. That hasn't happened yet. But when my non-stimulant was added, it provided 24-hour coverage. So that helped enough for my current pandemic lifestyle. I also sometimes consider the timing of my dose. If I have something later in the day, I may take my medication a bit later, when travelling returns to my world and we're having long days or changing time zones. I'll evaluate what part of the day will be harder to ensure I'm getting medication coverage then lastly; do you know what happens when your medication wears off? Does it have a rebound effect, some medications have more rebound than others and some people have more of a rebound too. Also, my children's pediatrician taught me that Vyvanse it's not the actual stimulant that can make going to sleep harder. It's the wearing off that does as someone who's trying to develop a daily nap habit to balance getting up at 5 am I can tell you that I don't have a problem sleeping midday well on a stimulant, what is the situation when your medications were off?

Moira Maybin  28:28

Okay, you've done the hard work by staying to the end your reward. Here are the main takeaways from today's episode. Number one, medications are the first line in successful treatment and not a last resort. Number two, the changing nature of ADHD symptoms is a direct result of hormonal fluctuations during our monthly cycle. And we can learn the timing signs and symptoms of what our brain and body are showing us because it cycles through the same routine every month. And we can use that information to help form our own treatment plan. Number three, we can figure out if our ADHD medications are working by using the West self-report form and a medication side effects form to help anyone with ADHD or as part of a diagnosis process. And these are validated scales that we can take to our doctors or teachers for help with our children. Number four stimulant medication only partially treats our ADHD it's very important to our health, well-being and life expectancy to know how to establish if we are on the right dose of medication. Non-stimulants are effective for those who cannot tolerate stimulant medications and help with emotional regulation, impulsivity, hyperactivity, both physical and mental. And with getting to sleep at night. There are four questions to ask yourself if non-stimulants are a good fit for you. And you can find those on my website at ADHDfriendlylifestyle.com. In our next episode, we're going to start putting together all of these pieces, hormones, medications, along with other parts of the picture to create our own ADHD for lifestyle. I hope you enjoy today's show. This is the place with the late-diagnosed women, moms professionals. Those who want to understand ADHD be heard and know they are not alone; we can have an ADHD friendly lifestyle that includes more time with our strengths and passions. Less with our challenges has ways to adjust what and how we do things to suit us better and expand the ways in places that ADHD is understood and accepted. I'd love to know your thoughts about today's episodes and appreciate questions you'd like to hear on the show too. All questions will be anonymous, respected and appreciated. And I can't wait to continue this conversation with you. To get in touch you can check out my website ADHD friendly lifestyle calm or email Moira at ADHDfriendlylifestyle.com or comment below on this podcast. Please remember, I am not a doctor. The information presented in this podcast does not replace the individual recommendations from your health care providers. help spread the word about understanding and accepting ADHD. By subscribing to the ADHD friendly lifestyle on Apple podcast, or the podcast player of your choice by rating and reviewing you help us get to more people. If you can share the podcast with the people in your life. It helps all of us. Thank you for your support. And now for our feature. Tell me you have ADHD without actually telling me you have ADHD. I'm supposed to be studying today for an exam. And I found myself cleaning the bathtub and the toilet, or really the whole bathroom because I noticed a bit of grime. If you want to tell me you have ADHD without actually telling me you have ADHD, visit my Facebook page. Maybe you'll hear yours on a future episode. Thanks for listening. See you later.