ADHD & Hormones with Saskia Wenniger
Saskia Veneker's journey through a late ADHD diagnosis highlights the complex interplay between hormonal changes and ADHD symptoms, particularly as she approached menopause. This episode delves into personalized treatment options, emphasizing the importance of understanding hormonal influences on ADHD for midlife women.
Highlights
Saskia's struggle and triumph in navigating medical support for ADHD amidst hormonal shifts.
The critical role of personalized, holistic treatment approaches for ADHD and PMDD.
The value of support networks in managing complex treatment plans and emotional battles.
Summary
Saskia Veneker shares her personal journey through a late ADHD diagnosis and its connection to hormonal changes as she approached menopause. Her story reveals the often-overlooked link between hormonal shifts and ADHD symptoms like brain fog and mood disturbances, particularly in midlife women. By highlighting her challenges in finding medical support and her triumphs in addressing these issues, Saskia ignites a necessary conversation about the importance of acknowledging hormonal influences on ADHD.
The episode also explores various treatment options for ADHD and related conditions such as PMDD, underscoring the need for personalized, holistic approaches to care. Dr. Kularny's tailored protocol for PMDD, which involves hormonal therapies and SSRIs, is discussed, highlighting the difficulties ADHD patients face in managing medication effects and the executive function required to track treatment plans. Saskia emphasizes the indispensable role of support networks, like ADHD coaches or trusted friends, in navigating medical appointments and decisions.
Listeners are encouraged to connect with Saskia through her platform, brilliantlydiverse.com, for ongoing support and insights into managing ADHD amidst hormonal changes. Her candid sharing of emotional struggles with conflicting medical advice offers hope and resilience to those facing similar challenges, making this episode a beacon of support for women navigating ADHD and hormonal upheavals.
Transcript
00:00 - Sarah (Host)
00:00 - Sarah (Host)
The Adulting with ADHD podcast is not a substitute for medical advice. Please see a medical professional if you think you have ADHD or if you have questions about your current treatment. To support this podcast or to access the podcast archives, visit patreoncom slash. Adulting with ADHD. This is the Adulting with ADHD podcast self-empowerment for people with ADHD. Today, I'm very excited to have with me Saskia Veneker. She is an ADHD coach and founder of Brilliantly Diverse. Welcome, saskia, glad to be here. I'm so glad to have you. We've known each other for quite a while on Twitter and we have a shared interest in ADHD and hormones. First of all, could you tell us a little bit about your ADHD diagnosis story and how you got into coaching?
00:55 - Saskia (Guest)
Yes, of course I'm one of the late diagnosed women, of which there are many, I think I had a very meandering career and all throughout my studies and building my career I struggled with issues of anxiety and depression and never quite figured out how to manage that really well.
01:18
So I did a lot of things where I was limiting myself in order to keep my head above water, and I did a lot of that as well as I prepared to have my two kids and when I finally left my study job to become self-employed, I once again struggled and I lost a lot because I lost all the supportive structures that I had built in the job that I had been quite successful in for 12 or 13 years.
01:46
And that's when my husband read an article about a lady struggling with ADHD and she was like this sounds so much like you, it's almost creepy, maybe you should look into this. So that's what got me reconnecting to my old psychologist who treated me for depression and anxiety, and she got me referred to someone, was assessed and received on the verge of becoming 40, received a diagnosis of ADHD, and that put a whole lot of stuff into perspective. I had been trained as a coach just before and I was working with people in a role as a strength-based coach, but not really daring to jump into actually becoming a coach and charging money for my services, even though I enjoyed it a lot. But since I received after my diagnosis, also coaching targeted to the ADHD and I really benefited from it a lot, that's when I decided to specialize and become an ADHD coach, but I still do strength-based coaching for people with ADHD.
02:53 - Sarah (Host)
That is so neat to see your purpose come out through all of that and it's funny we always find our way home somehow. But I love hearing all those pieces coming together for you.
03:04 - Saskia (Guest)
I still also work in my old job as a learning designer, but I really like to do both. I think the coaching is so intensive, one-on-one working with people sometimes quite emotional, so I like to balance the two.
03:17 - Sarah (Host)
Absolutely so. In this journey, you were on the verge of 40. At what point did you start making the realization that this ADHD thing and then your hormones there's an intersection there? When did you start to realize?
03:32 - Saskia (Guest)
I think it wasn't until I started the very first phase of pre-menopause and it was likely, as I was, I think, ending an 18 month period where I was really doing very well, like I had my meds figured out, I was using all the ADHD strategies I'd learned in coaching and in the treatment I received, and I was building my business and things were going really well. And then my period started becoming heavier and more irregular and I started having these three to four days of like really bleeding where I couldn't leave the house, yeah, um, and because I was changing pads or cups so much, yeah, and also brain fog and quite depressed moods leading up to that, yeah. So maybe the one or two days before my period started and the first two days of the period, I would get really awful brain fog. I asked my doctor for referral and visited a gynecologist and by then, of course, I was knee deep into all the ADHD research, because as we do and as I do, because learner is also one of my top five strengths. So I was diving into the literature and researching everything, yeah, and in the past I'd had really bad experience with being on birth control.
05:02
So when I was referred to the gynecologist. Almost the first thing she said as well, if we want to stabilize this, we'll put you back on birth control. And I said, no, I'd rather not. But she was very dismissive of my suggestions that I wanted to be very careful with that because I'd had bad experiences in the past, but also because I knew there were interactions between hormones and ADHD. And she was like no, it's either this or we can't help you. So I left her office, quite how would you say defeated. I guess I didn't actually pursue that for at least a year after, I think I went back once more then, but then I just left it. And it wasn't until, I think, almost two years later, when things started to really get out of hand, that I decided to go back to my doctor and ask for another referral and I ended up with a different gynecologist that was able to really dig in deep and it was also much more willing to listen to me about what was going on and and I did that because I was.
06:14
The symptoms were really getting out of hand and it almost became similar to what I later discovered is called PMDD, which I think you've done a couple of episodes about.
06:26
Yes, it's very real Menstrual depressive disorder, and my daughter started looking like that and in December of 2019, I think, I really started to experience suicidal ideation.
06:40
In those periods leading up to my period and the first two days, the meds completely stopped working around that time, like in my cycle, so I wasn't getting any benefits from the stimulants I was taking for my ADHD, and it was really weird because I've been depressed and this just felt different. This felt like it wasn't me, like it was some outside force upon me, and even like with having suicidal thoughts in the past when I was depressed, I could trace it back to some sort of mental issue or problem that I was experiencing, and in this case, it just felt like it was coming out of nowhere. Yeah, it felt very not part of me, yeah, which, in one way, made it easier not to identify too much with it or act upon it, but it still felt very scary having two kids and being like I can't just leave these to their fate. I need to get this handled. So that was the last push to reach out to another gynecologist and start a whole cycle of various experiments with hormonal treatments.
08:03 - Sarah (Host)
And good for you for not giving up. That's a long time more than two years to be going through that and it's such a all that red tape and all that bureaucracy and referrals and going through people who don't listen to you.
08:16 - Saskia (Guest)
major props for sticking it out, because it's not easy what really helped and which is why I love to be on the podcast with you as well.
08:24
Being in the process of researching ADHD anyway, I started looking for connections and comorbidities and I started finding the scraps of information that were available at that time around how, for women with ADHD, how their ADHD is handled and how they are on top of it or not, is highly related to how well their hormones are balanced out and and what's going on with their body in that sense.
08:54
And I think I remember sharing an article I found in the ADHD in practice magazine from 2015 with you that, yeah, that had like really clear research that it was referring back to about how estrogen is highly related to the upkeep of our dopamine system and how well the dopamine system functions, and so that sort of gave me stuff to hang on to and go.
09:24
Yeah, I do need to believe what I'm thinking and feeling around this, because there's actual evidence here that I can take back to these doctors and go look, you may not know this because it's a highly specialized area and, like, I can't blame you because there's so much information and there's so much going on in the human body where things are interacting with each other because I have adhd. I've did it, done a deep dive into this, and maybe that'll help you understand why I'm not um willing to accept this treatment, but maybe we could try this other thing, and so finding things like the Kularny protocol for PMDD and finding that information in the ADHD in practice magazine about various things that had been tried with women in menopause and premenopause was really helpful in advocating for myself and and sticking to my guns.
10:21 - Sarah (Host)
Which is hard anyway as a woman, going into a doctor's office and having to push back. But as an ADHD woman, I think it's even harder. Because I don't know about you, but I feel like I've had a lot of struggles with asserting myself and not minimizing myself, and a lot of that came through like years of suffering with undiagnosed ADHD. That's like twofold you had to overcome to assert yourself. That's just incredible. I don't know if you've ever been put on a waiting list, but therapy is hard to come by these days. If you need therapy and you need someone to talk, to consider BetterHelp. I've been using BetterHelp on and off since the pandemic and it's honestly been really helpful when I can't reach my normal therapist, to save 10% off your first month, visit betterhelpcom. Slash ADHD adulting. That's betterhelp H-E-L-P dot com. Slash ADHD adulting. What is this Kolarney protocol for those who aren't familiar? I'm not too familiar, but it rings a bell.
11:26 - Saskia (Guest)
She's specialized in ADHD and hormones. I think Dr Kularny is specialized in treating PMDD and she has various videos up on YouTube where she talks about the prescription protocol that she's tested and gotten a lot of good results with, where she treats people with BMDD with either continuously taking a low dose hormone sort of the pill, so obtaining both estrogen and progesterone, and sometimes medicating on top of that with either extra estrogen or an SSRI. Yeah, that tracks.
12:04 - Sarah (Host)
Like you, I was not interested in the birth control for other reasons, for cardio stuff and other stuff. So yeah, for those who are listening, if your gynecologist just wants to throw birth control pills your way, know that there are other things you can do.
12:20 - Saskia (Guest)
I wasn't fully able to stick to my guns in terms of refusing to even try that, because in the Netherlands there are heavy protocols active at the moment where you have to go through a process of trying certain things before you can try things that are outside of that protocol. So through, I think, three different variations of hormonal replacement treatment that do contain synthetic hormones. And synthetic hormones work really well for some women, but for some reason I'm very highly sensitive to both synthetic progesterone and synthetic estrogen. I get like huge migraines in my stop week, high nausea, and so I had all sorts of adverse effects.
13:11
Knowing about how hard it is for us with ADHD to sometimes be aware of patterns and really observe what the effects of medications are, I started tracking those because I felt like I can't just do this off the top of my head when I'm in the doctor's office, like I really need to chart this and show them what's going on and what the connections are between my migraines, my nausea and when I'm taking what medications.
13:38
So luckily I found a gynecologist willing to work with me and he switched me first to the thing from the Kularny protocol which is called Zooli in Europe here it's a really yeah, and just continuously taking that and then, when that wasn't getting the effects we wanted, he was willing to switch me to a natural estrogen and I was still getting reactions to the synthetic progesterone. And then he switched me to a natural estrogen patch with a natural progesterone pill for 12 days out of the cycle as well, and I started getting rashes from the glue from the estrogen patches so I ended up using an estrogen spray instead. But so far that has been working really well. But it took us about 18 months of various combinations to figure that out.
14:29 - Sarah (Host)
Absolutely, and I did want to point out the protocol, the idea that you have to try these things before you can get to the others. I went through that too, not for estrogen, but for my ADHD, my ADHD meds and just a heads up for the listeners. You can lose a lot of time. It takes so much executive function to keep track of all that. When you try one thing, like to have the executive function to remember when you tried it and remember to push back when it's time to try something else. I lost track of that back before I really had my symptoms dialed in and so they took me on medicine that was fully working and I was on something else for years and I didn't have the wherewithal to really go back and say, okay, this isn't working, let's try something else. And just a red flag for anyone. It's really hard. This might be a place where you can involve an ADHD coach, but just staying on top of that, because I lost so many years, I was on the wrong medicine the whole time.
15:30 - Saskia (Guest)
And not everybody can afford an ADHD coach but just keeping notes in a place where you'll go back to them and you can find them, like whatever system you're already using. Added to that, if it's a paper calendar, if it's your Google calendar, if it's some folder in your normal computer files, just go there and make notes and keep adding to those notes. I think In general with ADHD it's like a real struggle with us that we need holistic approaches to medicine more than anyone. And even here I ended up midway through our experiments with the gynecologist, having to also talk to my psychiatrist because at some point the gynecologist was saying this isn't working, then we'll just have to put you on an antidepressant.
16:17
And I had to myself go to the psychiatrists that previously prescribed my medication, go back to him, explain the situation and decide what I needed to tell him, which, like as with ADHD, you can sometimes have these meandering stories that go on and doctors don't have time for that.
16:39
Like, really shorten it down to the specifics that they need to know. Also, to go in with what do I want to get out of this conversation? So in this case I was really reluctant to try SSRIs. I've had various people in my life have really adverse effects from SSRIs. So I wanted to come out of that conversation with the psychiatrist backing my plan to try the natural hormones first, and that worked. But you really need a buddy sometimes to vent to and I think you and two other people I connected to on Twitter were really vital in that in just letting me vent and find nuggets of information that I needed to share with my doctors and also get the high emotion out of there so that I was able to be calm and rational when I was talking to the doctors again.
17:30 - Sarah (Host)
That's such a good point and I really love how you're giving the doctors the benefit of the doubt, cause I know I go through phases Like I was really angry at first, so angry, and it's just's just. Oh, they just don't care and you just want to throw a fit. But if you go in there half cocked and just start shooting from the hip, like you said, they don't have time for that and you might undermine yourself inadvertently.
17:51 - Saskia (Guest)
Yeah, you might get dismissed or it might trigger somebody's like ideas that they already have about ADHD. You're disorganized and crazy. You might discredit yourself yeah. And in one case some people are really hard to get through to. Like the first gynecologist I was referred to, I'm convinced I would never have been able to make this, no matter how calm or rational or organized I was. She was just stuck in her way of looking at things.
18:17
And this gynecologist was willing to listen and I worked with that because he was willing to listen the first time and the second time I was like more motivated to keep my emotion out of the room and make sure I processed that ahead of time meeting with him or afterwards. Sometimes I would call him back a week after and say, listen, I thought about what you said and really there are two holes in your arguments here, and can we talk about this again? So I need to really gather my courage to self-advocate and, while I had agreed with him in the first conversation, go like I'm really reconsidering this and I would really like it if we could instead try this. Would you be okay with that? And sometimes that worked and sometimes I had to give in and try another six weeks of a medication that I didn't really believe would work.
19:06 - Sarah (Host)
Yeah, yeah, and it's so hard in that moment and I think this may be an ADHD thing too is in the moment it sounds good, you want to be agreeable. You're like, yeah, you're convinced this is like going to be fine. And then you go home and you have time to reflect and you're like, ah, I just don't know about this. And when you've left the doctor's office, you're stuck at that point. Okay, I guess I'm going to try this now. So really, such a shining example of overcoming so many obstacles to get what you need. That's wonderful, don't?
19:39 - Saskia (Guest)
get me wrong. I had my fits of rage and cry. Well, I was like I don't know about these doctors. They just want me to cut myself up into various pieces and decide which piece I have to hand, which bloody piece I have to hand, to which. They're giving me back all this conflicting advice and now it's up to me to figure out how to fit that into my life and make it happen. And I just fucking can't do it. I'm sorry for my. I love it. Yeah, it's of despair and anger.
20:09 - Sarah (Host)
So it is extremely frustrating. Thank you so much for sharing your story. I think it's going to help so many people. So if people want to still continue to keep up with you and find you online and learn about your practice, how can they?
20:24 - Saskia (Guest)
The website would be the easiest, which is wwwbrilliantlydiversecom, but I'm also active on Instagram under at brilliantly diverse. You can find me on twitter. If you're dutch, try at coach saskia or um. If you're english, then you can try adhd, underscore cyborg, which is where we are connected. Yes, I'm also on facebook, at brilliantly diverse, but I I don't really do very much on facebook.
20:55 - Sarah (Host)
Same yeah, that's great. Thank you for sharing that and thank you so much for being on our. Thank you for having me. It's been a pleasure and hope to have you back.
