Wondering how premenstrual dysphoric disorder (PMDD) and ADHD intertwine? Imagine being a midwife with an undercurrent of undiagnosed ADHD. Join us for an insightful conversation with Kirsty, a seasoned midwife who bravely shares her journey navigating these challenges. Listen as she reveals her battles with intense bouts of anxiety and physical symptoms of PMDD, leading her to seek treatment through antidepressants. As Kirsty's story unfolds, she also delves into how her medication's effectiveness started to decrease over time, marking one of the most challenging times in her life.
Kirsty's journey didn't stop at PMDD. She takes us through her personal and professional challenges around ADHD diagnosis and medication. From lengthy forms to dismissive medical professionals, Kirsty gives us a raw account of what many individuals face when seeking mental health support. Her experience with ADHD, its impact on her family, and her current medication regimen provides valuable insights into managing ADHD and associated medications.
In our eye-opening conversation, Kirsty reflects on hormones' role in her ADHD and how they affect her medication needs. We discuss the importance of understanding women's health, mainly how ADHD medication interacts with hormonal fluctuations. Kirsty's story underlines the need for better collaboration between gynaecology and psychiatry. Join us on this episode as we explore the complexities of mental health, hormonal influences, and the struggles and triumphs of living with ADHD.
Outro
This is a special edition episode recorded from a webinar.
Wondering how premenstrual dysphoric disorder (PMDD) and ADHD intertwine? Imagine being a midwife with an undercurrent of undiagnosed ADHD. Join us for an insightful conversation with Kirsty, a seasoned midwife who bravely shares her journey navigating these challenges. Listen as she reveals her battles with intense bouts of anxiety and physical symptoms of PMDD, leading her to seek treatment through antidepressants. As Kirsty's story unfolds, she also delves into how her medication's effectiveness started to decrease over time, marking one of the most challenging times in her life.
Kirsty's journey didn't stop at PMDD. She takes us through her personal and professional challenges around ADHD diagnosis and medication. From lengthy forms to dismissive medical professionals, Kirsty gives us a raw account of what many individuals face when seeking mental health support. Her experience with ADHD, its impact on her family, and her current medication regimen provides valuable insights into managing ADHD and associated medications.
In our eye-opening conversation, Kirsty reflects on hormones' role in her ADHD and how they affect her medication needs. We discuss the importance of understanding women's health, mainly how ADHD medication interacts with hormonal fluctuations. Kirsty's story underlines the need for better collaboration between gynaecology and psychiatry. Join us on this episode as we explore the complexities of mental health, hormonal influences, and the struggles and triumphs of living with ADHD.
Outro
This is a special edition episode recorded from a webinar.
Afternoon. Everyone. Welcome to our podcast. I am Laura Spence and I'm here with my co-host, louise Brady.
Speaker 2:Louise, nice to be here, hello.
Speaker 1:And today we have the lovely Kirsty with us. Now, kirsty is the first midwife that we've interviewed on the podcast, so a very warm welcome to you, kirsty, hi, and we're just very interested to know about your yeah, your diagnosis, I suppose first and foremost Kind of tell us a little bit about who you are and what you do.
Speaker 3:So I'm Kirsty. Obviously I'm a midwife. I had issues completing academics when I was younger, unsurprisingly so I didn't qualify until I was 32. I started training at 28. And I'm coming up 42 now. So I've been a midwife 10 years.
Speaker 3:I didn't start struggling with anything really until I was about 36. I got sterilised at 35, so I came off contraceptives and about a year, 18 months later I just I suddenly had bouts of intense anxiety, like physical anxiety. I felt physically anxious, I was jumpy and shaky. After only about three months of it happening I realised it was premenstrual. So I put it with it for a little bit. I remembered my mum suffering terribly with the premenstrual stuff. I remember hiding in her room for like a week at a time and she was around about the same age. She was in the late 30s, so I thought I'd probably about six months or so.
Speaker 3:I just dealt with it and then I went to the GP and burst into tears because I was due on when I went to the appointment and I didn't really know how to describe what was happening either, because the word anxiety didn't really help me. It didn't make sense, but over time it became the only word that I could use. So basically it was either straight away off of the antidepressants, which I didn't want, because I wasn't depressed. I wasn't really anxious other than just for the two weeks after ovulation. So I tried to panellol. That worked for the physical symptoms, but the side effects were too much for me. So I went back a couple of times and eventually I just took the antidepressants because it was getting worse and there was no solution.
Speaker 3:I remember asking, like it's only when I'm due on, is it my hormones? And the doctor was just like well, it doesn't really matter, because the treatment's antidepressants either way. So we're not going to do any investigations into your hormones, because obviously I was in my late 30s then. So that is this like perimenopause? And basically the answer was it doesn't really matter, the treatment either way is antidepressants. So I take the antidepressants or go on the pills the other option. So the antidepressants worked actually really well for a while, maybe a year or so. It was still there, I think at the time I described it. It knocked it from 100% down to about 20% of the symptoms and that was bearable then I was so to describe my worst. I did come off this and being a bit all over the place on Don't don't, don't, don't.
Speaker 1:I'm not saying. I'm saying we are a wiki on that, because we do exactly the same.
Speaker 3:Yeah, yeah, yeah, so, yeah. So I tried the panel all went on the antidepressants that worked for that worked really well for a while, in that it knocked my symptoms down to be manageable, but it wasn't an explanation for anything. Over time they became less effective and I'll come off them for a while because I thought I was fine and it was probably the worst six months of my life. I was I'm going to get emotional talking about it and because at the time as well, the only word I had to use were words associated with anxiety towards the time that was off the antidepressants, and this was probably this is the back end of 2020. I think going into 21. Yeah, august to March, I was often that that time, by the end of it, I went back on him and I was just I was.
Speaker 3:I couldn't cope with my life at all. I was having what I was calling panic attacks before work, sort of. I'd look at my diary and I'd just see my list of patients and I just I can't do it, like how am I expected to do it? Sorry, and then I was a single parent at the time as well. So I'd go to work, I'd come home, the house would be a mess from last night, the kitchen.
Speaker 3:The kitchen wasn't clean from last night and I'd come home from work and I'd be worn out and I'd have been stressed all day. I'd be feeling really panicking and I'd have to have a drink and a sort of like a cigarette before I'd send the kids off to the bedrooms to do whatever they need to do and get changed or whatever, and I'd have a cigarette in the back garden and have a glass of wine or a gin and tonic and only then would I be able to like write OK. So now I've got to clean the kitchen, I've got to wash, now I've got to feed the children and just all of it. Just an absolute mountain until my period came and then I was fine. Yeah, a different person Like a different person.
Speaker 2:It's been a while. You're getting emotional.
Speaker 3:It's, yeah, it's a real.
Speaker 3:Yeah, I'm an emotional person. I'm getting aged, yeah, yeah, which I know now. I didn't know that at the time, obviously yeah. So so, and at the beginning of this year, there was loads of stuff going in my personal life to do with my daughter and loads of loads of loads of just basically, from 2022. I was I've gone back on this is how the, which was helping, but it didn't take it away, it just made it more manageable. I still have no all. I just had severe PMDD. Didn't know why I wasn't even really diagnosed, because that's not like a UK diagnosis, is it? It was just that's what I'd been reading about.
Speaker 3:And then my life got more and more stressful. I met somebody. I moved to Manchester with my children my younger daughter who is undiagnosed ADHD. I didn't know that at the time Things were going well. It was all this stress Move jobs, moved house, new partner. My daughter went to live with the dad, my other daughter's going to uni and I think just the amount of stress it was just it just become less manageable. And then I referred myself counselling because the premenstrual feeling that I had was starting on day seven. It wasn't, it used to only be day 15. I'd wake up and I'd be like, oh God, I've populated, that's it. And then it was ovulation was difficult. So it gets the day 10 of like. Oh, I feel, really I feel premenstrual now, and then, at the point it was starting on day six, day seven, that's when I referred myself in for like counselling.
Speaker 1:And if you get less of a break.
Speaker 3:Well, yeah, I guess I was just, I was just more confused. So I was like, well, these premenstrual symptoms are no longer premenstrual and I don't really know what to do with it anymore. I know that I'm stressed and, like I said, by this point we're talking five, six years of me having treatment for it, five years maybe and all, and I'd sort of gone from thinking you know, this is not anxiety, there's something physically wrong with me and it's to do with my hormones and I need help with it to just accepting that. Or I've got anxiety. It's made worse by my period, it is what it is.
Speaker 3:But then all the treatments for anxiety weren't appropriate. Like, if I read about CBT, I'm like, well, I don't have those thought patterns I don't do. Like none of it was helpful to me and I didn't really know why, other than maybe I just wasn't engaging with it because I wasn't self aware enough, and you know all the stuff you tell yourself. Obviously I'm the one that's in the wrong. If everyone's telling me I've got anxiety, then obviously it's anxiety, yeah, yeah.
Speaker 3:And then, using that language to fit my experience as well, like calling them panic attacks, like I didn't. They weren't panic attacks and I only refer to them as panic attacks in retrospect, because I needed a word to describe why I was in the toilet crying yeah. So at the point where I got diagnosed, I'd got to a point where I couldn't go to supermarkets. I tried to fit all of my life into the two weeks before I affiliated and that was I couldn't send to be around people my children, my partner. Now I know I was just. It was sent to be overwhelmed. That's what it was. That's what the anxiety was. It was sent to be overwhelmed and I was having meltdowns, not panic attacks.
Speaker 3:But I didn't know that until recently, yeah, so I referred myself in because my symptoms were no longer just premenstrual, thinking that I needed counseling. And it was the emotional outburst because it was when I was having a trouble sometime with my daughter. So I was no longer able to hold my emotions together in front of her.
Speaker 3:And I'd get triggered and I'd start shouting and screaming and hiding my room, crying and stuff, and I can't. Like he's 15, like she doesn't need that for my mum. Excuse me, I'm just calming my body down, I'm talking, it's okay, just your own, your own pieces.
Speaker 3:Yeah, so and I think it was so I referred myself. So I'd moved from sort of Lancashire to Manchester, so I'd moved from a small town to a city. So I think that made a difference in the services I could access Previously. Only in my GP I'd spoken to obstetricians at work, you know, just like in the break room and stuff, and they were the same. They're like well, have you tried on to depressants that's the treatment for severe PMS and all going on the pill Again, two treatments going on the pill or taking and to do it. So I referred myself in and I think just purely by chance or I've heard myself to something it's sort of like a. It's called Greater Manchester Resilience Hub, so it's just sort of like I apt, I suppose, and I think it was just pure coincidence that the person who triaged me was a psychiatrist. So I typical ADHD.
Speaker 3:So that morning I'd been having my daughter, was it like? At that time she was a school refuser so I'd been trying to get into school that morning. It had been terrible morning I was due on. I'd completely forgotten about this appointment. That was on my calendar so I looked at it as a phone. Once my phone rang at 10 o'clock. I totally forgotten I was due on. I'd had a horrible morning. I was on the verge of tears when she rang me. So she was like oh, do you want to read? Do you want to reschedule it? And I'm like no, no, no, no. I was like no because what happens is if I go and see the doctor when I'm not due on, I can't describe how bad it is. But when I'm due on, you can see how bad it is. I was like no, I want to do it now because I'm on day 27,. I've had a horrible morning. This is what my life is like and nobody sees it.
Speaker 3:So I had like an hour long talk with this woman who at that point I didn't even know she was a psychiatrist. I just it was. People were ringing me about counseling. I was describing my experience so that they could pick the right therapy for me, because I wasn't willing to go up on empty peasants and I wasn't willing to go on the pill. So I like said I had an hour long conversation with this woman and she was asking me questions. She was asking me about my childhood, she was asking me about my academic performance and I was fine, like I was chatting away, I don't, like I wasn't thinking about the question she was asking me, and then after an hour she said well, to be honest, kirstie, I'm pretty sure that you've got ADHD and so does your daughter, and I'm like I was like no, like, you've spoken to people, I can see the connections that you've made, I can see why you say that and I can see what you've picked out of my past that is supporting that. But I'm not hyperactive. I can concentrate just fine. And I just didn't believe it. Really. I've had two books about women with ADHD and I was like, oh yeah, the thing that's so good for me pretty much immediately or it took a long time to sink in was my executive dysfunction. As soon as I read that people with ADHD struggle with their executive function, it was just like all of it is me, which was a huge shock Because I know a lot of people read about ADHD and then they approach health care professionals looking for a diagnosis and I was completely blindsided by it.
Speaker 3:That was in January. I was having loads of trouble with my daughter at the time. That came to a head in February and up until then I had it in my head and I'd sort of yeah, it probably is that, but I was so busy with everything else I didn't have time to process it all really. And then, after things come to a head in my daughter and I just sort of crashed, I just kept showing up to work Because I didn't know what else to do. I couldn't even. I wasn't even functional enough to decide I was too ill to go to work.
Speaker 3:Sorry, and it was a new job as well, so I didn't want to not go in. I'd only just started on the job. So I was just like, well, I took time off while the things in my daughter were getting settled. I expected that I'd be fine to come back to work afterwards and it wasn't. But actually I was. I could. My functioning was so bad I couldn't even recognise that I shouldn't go to work. So I was going to work and then I was just like they were sending me home. I don't know why you're here, kirsty, go home. I probably did that three times before I actually just accepted that I couldn't work and I was off sick. So while I was off work that's when I was just I read loads of stuff about ADHD and I just I just booked an appointment with a private psychiatrist. So I got diagnosed in April. Sorry, emotional first.
Speaker 1:It is a really you know, I can see how difficult this journey has been for you. There's obviously there's been a lot of kind of self-realisation and you know, obviously, all the difficulties with your daughter. It is, you know, and I think it's really important that you let those emotions out, isn't it? Because actually I was reading something Melody there about crying and how it really helps to regulate your nervous system, and maybe that's why I was at ED. Yeah, I've always been a cryer.
Speaker 3:When I had my assessment. That said, I was one of the questions that he asked. He said do you find that you're sort of like prone to tears a lot? And I was like, yeah, like they've been my personality since I was a child. I can't cry, I say that.
Speaker 2:Like.
Speaker 3:I'm the big wife, so if you're facing to tears at work, nobody cares, because maybe you're having to cry all over the place all the time.
Speaker 2:You'll know they will.
Speaker 3:I imagine that will help you know, it's exactly the same. To be honest, I was never embarrassed about it. And then the psychiatrist went out because he was like, well, how often do you cry? And I was like, well, I don't know, maybe like average four, five times a week. I mean, it was like I know.
Speaker 2:But it's really not normal.
Speaker 3:I was like well, I just, sometimes I need to cry Like it makes me cry. It releases the tears.
Speaker 2:It feels so good after you've cried.
Speaker 3:Yeah, well, yeah, because it builds up and it builds up and then it gets triggered, and then I get these massive emotions that I can't think my way out as much as I try.
Speaker 1:Yeah, so I've lost my chance, but I'm not going to cry, so he was asking you about crying. So then when?
Speaker 3:he talks about medication, he said, oh, the medication will probably stop that. And a large part of me was like oh, I don't want it to, I know, but what is crying? I'm like look that one.
Speaker 1:Is this such a child crying you?
Speaker 3:need to be emotional and start crying, and it hasn't stopped it. Really it's minimized it, but I'm still made Like I still have my.
Speaker 2:You started the medication then.
Speaker 3:Yeah, so I started it straight away. The reason that I went to the psychiatrist is because I wanted the medication Like to me, it was the only reason to be diagnosed. I suppose because you can get accommodations without the diagnosis. And I think especially in the NHS they're accepting of the fact that I'm not diagnosed. But look at the process for getting diagnosed. Obviously I'm not diagnosed. I need accommodations now and everyone's totally fine with that because, good, I can't wait three years to go and see a psychiatrist.
Speaker 1:And actually you know something that's the whole process of trying to get diagnosed in the NHS works so much against the ADHD personality. I mean just diagnosis, even the private one.
Speaker 3:Yeah, I didn't fully accept, although there's been multiple and I'm sure you understand, there's been multiple moments where I'm like all right, actually that thing has made me really accept it.
Speaker 3:And then something else will happen and I'll be like, oh OK, now this has happened. I definitely know that I've got ADHD. The first one was filling in the forms for the psychiatrist, so I found him online. I did a little bit of reading, so that was already some executive function, but it was my life focus so I did it. Well, so it's easy, isn't it? You know what you're doing. So I found the guy. I was happy. To be honest, the biggest thing, the biggest deciding factor to me, was the time frame in which I could be sitting. I wasn't. I couldn't wait. I was off work. It was the third time I've been off for a long period of sickness, for anxiety, yeah. So then I found him, sent the email and then they sent back nine forms for me to fill in.
Speaker 1:Oh my.
Speaker 3:God. So I did whatever. I'm of ADHD, I was on it. I went to my GP I'd already spoke to my GP about shared care before I went to the psychiatrist. I went to my GP, I applied for medical records and then that was the day that I got it, sorted all the forms out and then I left it for two weeks so I'd done a little bit of it. So in my head I was like dick. Then, two weeks later, still no closest and any of these forms filled in did my forms.
Speaker 3:You know what the forms aren't? They're like the checklist. I did the one for my partner with my partner filled in all everything, all the paper, and then I got to the point where I had two things left to do. And so I had this little burst when I'd done the initial stuff, left it for ages because I'd done loads and it's fine, and then filled the forms in. So then I was down to the parent, one and just another one I can't remember. So I had done so much to get a diagnosis and I was just I can't do it, I can't do it. I can't make my mum go through this form of it. I can't. I've done mine, I've done my partners. I just can't put myself through it anymore and it's a barrier to me sending these forms off. Please can you just accept an old school report, big, long ADHD email, loads of exclamation points, loads of brackets. Then it's 20 minutes later, sent a new one saying OK, no worries, I've spoken to my mum, I've done the form. Here's the form.
Speaker 1:Yeah, yeah, yes, it gets funnier.
Speaker 3:So then I did that and then I was like, yes, I've done it, I've done it. I had a nice conversation with my mum about it because clearly she's 110% ADHD, which was part of my barrier to asking her. So I was like she won't be a reliable.
Speaker 3:It's like her personality is so ADHD, she's well anyway she's told me loads of interesting stuff I shouldn't have discounted, you mean with your mother's experience. So I did that. So then I sort of had a panic, had a meltdown, couldn't do the forms asked for, like please just let me do it without it. 20 minutes later I was like no, it's all right, I've done it, Send it back. The next day, the reception woman the sort of admin lady, I don't know who she is email me back saying, oh, this is really great, We've got all the forms, but there's two missing. Here's how to use the ones that I'm missing. I was like, right, and so then I sent it up and I was like I hope that was the assessment, because I couldn't have done that in a more ADHD.
Speaker 1:I know it's like a trial. I'm like test them with these forms, yeah, yeah, well, I've just done it, just just read my forms.
Speaker 3:Look at the email of me getting those forms into you. Look at the time scales at which I've done it. And how I've demonstrated my.
Speaker 2:Yeah, yeah, you did, you did.
Speaker 3:When I sat down I said, well, to be honest, I see, some people it's a bit woolly and you've got to pick it apart. Some people, it's really obvious that it's ADHD. I feel like you're on this side, but let's just go through everything. I was like, yeah, me too. Or melody, no, yeah. So that's how I got diagnosed. And then I started on medication straight away because that's like I said, that's, that's why that was one of the biggest.
Speaker 3:The teleprompter is not effective. I've been on medication for a couple of a few years and it's not the medication. It's not helpful.
Speaker 1:Yeah, it's not getting better.
Speaker 2:You might be asking have you now? Have you now come off this telepromp?
Speaker 3:No, no, I want to. I don't want to be on it. I'm only on 10. I'm only on 10 milligrams. I don't need a lot of it. I tried 20 and went back down because it wasn't. Didn't do anything more than the tended, but it's not any easier for coming off it for being 10.
Speaker 2:I think I'm just really sensitive to it.
Speaker 3:Although my first GP, when he first put me on it, I done loads of reading, obviously, and I was like, all right, so it's given me my prescription for 10 to 10 milligrams a day. And I was like, so, if I want to come off it? And he's like, oh, it's only 10. It's fine, just stop taking it. And in my head I was like, no, that's not true at all, I won't take your advice. So I'm still on it. Actually, when I started ADHD medication, I became really bad at taking my cellopam because you can't take them together. So my routine of taking it when I woke up, I had to take ADHD meds when I woke up. So up until probably only about two weeks ago, I was missing it all the time. I was taking it once every couple of days, two, three days and I was like it was fine, I'm not anxious anymore. Now I've got the.
Speaker 3:ADHD meds. I don't need it anymore. And then I had a day where I was getting brain zaps and instead of just taking one to stop the brain zaps as a way of weaning myself off it, I just left it and I was on the full dose of ADHD meds and it was like I was on nothing at all. The withdrawals from the cellopam totally canceled out any effect of the ADHD meds, so I just started taking it again. I've been taking it regularly now for about a week, two weeks, and I'll just make moves to come off it in the future. It's not the right time now. Yeah, there's no rush there. I'm still thinking on ADHD meds. I've not found the right balance.
Speaker 2:What was interesting for me when I had my ADHD assessment really similar although I've suffered with anxiety forever really is. So I'm on Cetallopram and this was probably part of the assessment for me as well After I had my last baby.
Speaker 1:You're not in Celtain. Yeah, did I say.
Speaker 2:Celtain. No, you said Cetallopram. Oh sorry, I'm on Celtain. Same for you yeah.
Speaker 1:I don't know what I was going to say. That.
Speaker 2:After I had my last baby I went from 100 up to 150 because I was very unwell, predictably, yeah. And probably about a year ago or so I went down to 100 milligrams. I said to the GP I'd moved GP practices but I said I feel OK, I want to just try and go back down to 100. Yeah, yeah, that's fine. But I started to get really unwell again, really quite depressed and anxious. I didn't know I had ADHD, I didn't even have an incline that I had ADHD. So I myself increased up to 150 because I couldn't be asked to phone the doctor and getting a new prescription, because it always feels like such a challenge and a chore. So when I had my assessment I'd gone back up to 150 milligrams. But the assessor said to me you must run out of medication if it's not prescribed. I said no, it's fine. Oh, yeah, because you've taken more than yeah, so I know it's fine because I miss loads of days anyway. Like, yeah, I think you've got ADHD.
Speaker 2:Yeah, yeah, that's as bad as any people you kick yeah, yeah, we don't need to do any more. But she said, well, you're not getting the clinical benefit from it then, because you're not taking it regularly or reliably. And I was like, ok, yeah, I do know that. But since I started on my ADHD medication, she recommended just going down to the 100 that I'm actually prescribed. And so far so good is all I can say, because my goal is to really just toy with the idea of not being on non-depressant. If I can just rely on the ADHD medication for lots of reasons, but, similar to you, I wouldn't it's the fear of going back to where you were, because if it's that painful and that distressing, it's quite.
Speaker 1:And actually, I'm a bit the opposite of both of you, that you both seem quite keen to come off it. I'm on the maximum whack of sertraline and the maximum whack of propranolol and there's no way that I'll let them touch my prescription Because I've got to a point where I am on a dose of both of them that works for me and it's almost like a safety blanket now that I don't ever want to go back to the dark, dark places that I've been and it feels, even though I've got the diagnosis and I take my ADHD meds, it feels like too big of a risk to me. Yeah, when you know, I feel as if I'm eventually thriving in my life, I feel happy, more content than I've ever been. I absolutely do not want that to.
Speaker 2:Yeah.
Speaker 1:I don't want the darkness to come back, so, no, I don't and I would.
Speaker 2:if there's a choice, I would stay, and that's why I stayed on them for so long. Now is not wanting that darkness to come back. It was really fucking frightening.
Speaker 3:Yeah, I'm the same. I'm the same. That's why, and when I emailed the psychiatrist, I say no, I've started taking my telepand every other day, which was I was taking it whenever I remembered. He cautioned me against coming off it too quickly. But yeah, I just in my head I was misdiagnosed with anxiety and that's why I was on the Cytalopram.
Speaker 3:I resisted going on it and then it did help, but it helped in a way that we don't know why it helped, because it's not researched. Do you know what I mean? I know that the Cytalopram helped my ADHD, because I don't, if I try and parcel out what is anxiety, what is premenstrual symptoms and what is ADHD and it's only been since April, but I'm almost certain all of it is ADHD. I don't think there's anything that I go through that isn't ADHD.
Speaker 1:Yeah.
Speaker 3:That is the thing like the mental anxiety, the worrying about things and sort of that. When that got out of control when I came off the Cytalopram I can see now that it's had focus I was having. I think it's normal for women, when wants to get into that luteal phase, to have more negative thoughts, and I think that's all women, not just ADHD women.
Speaker 1:Yeah.
Speaker 3:No one is like to feel do you want, isn't it, feeling a bit more anxious about people around you, a bit more guilty about stuff? I think that's quite normal for women who would do what I'm doing, but I think the combination of not knowing that I've got ADHD, not understanding what hyperfocus is I'd get you on and I would be horrendously anxious. I'd be like worrying about things for hours and hours and hours, and then my pain is coming up. I'd be like why have I spent two days worrying about this thing that hasn't happened, like it hasn't happened. It's likely to happen, but at the time it was very important that I figured out this problem in my head.
Speaker 1:Yeah, it's something really at the core and it's taking you out the blue.
Speaker 1:And then I mean there have been times where I've experienced something similar but really felt a bit so dark that I thought I just don't need to live anymore. If I'm going to feel like this kind of intermittently and I don't know why I'm feeling like this I can't identify any trigger, but the next day you wake up and your period arrives and you go ah, I see, as if it was a surprise, as if I wasn't expecting it. However, I think you don't give it enough credit for the impact that the hormones have on your I think because the impact is so great, you don't give it enough credit.
Speaker 2:Does that actually feel so bad? Do you think that can't possibly be because of?
Speaker 3:I'm on the other end of it and this is whether I'm talking to my GP, whether I'm talking to my psychiatrist about my meds, whether I'm talking to other people about ADHD, like the fact that it's hormonal is central for me, it is the defining thing about it. I only got diagnosed because of the premature stuff and without my hormones I'd be pretty level. I don't distinguish my hormonal problems from the ADHD. The ADHD is the brain reacts to the hormones the way it does. I remember to say, talking to him, I sort of like I've got my psychiatrist and then I've got a GP, but it's through practitioner's health. I don't know if you've heard of it, so it's not. So it's basically a replacement for primary care for healthcare professionals, so it's to do with mental health, addiction and stuff.
Speaker 3:If you're a health professional, you're going to struggle to go to your GP or go to IAPT or to go to local addiction services because you're a professional and there are barriers. So this has been set up. I think it was set up for doctors originally. It's been going for a really long time, but then it was expanded to other healthcare professionals because of the pandemic. So I'm still under practitioner's health, so that takes the place of my GP, and if I was having IAPT it would take the place of that as well.
Speaker 3:I forgot my point. So I was speaking to her about the ADHD. Let me try and backtrack why. I was often on about her oh yeah, and she, yeah, no. Oh yeah, no, that's it. I've got to remember it. And I was saying to her so what I've? This is only like a couple of weeks after being diagnosed. So I said so.
Speaker 3:What I figured out is that my brain is just a variation of normal and my menstrual hormones are normal. So there's actually nothing wrong with me. This is just how I react to my menstrual stuff, like it's not an illness. My brain is normal, it's just ADHD and my hormones are normal, and it was just sort of a weird thing to think. I suffer so badly and my mum suffered so badly and I worry about, obviously, my daughter when she's older. And yeah, it's not actually a pathology. Yeah, I am that quite confident because, like I don't, I've not been told I've got a. I mean, I know I technically have been told I've got a disability, but I don't feel like that. I don't feel like I've been told I've got an illness or a disability. I just feel like I've been told oh right, okay, so you're this subset of normal and that's.
Speaker 3:Yes, yes that's such a good description and that is genuine how I feel about it and I'm glad of that. I'm glad of that.
Speaker 1:For subscript. Of normal, that'll be the title of the episode, because yeah nice.
Speaker 3:It's true though. It's true because, like and I think as well because I've been diagnosed now and I know it's really common as soon as you're diagnosed, you can see it in everyone, can't you Like? Absolutely it is true. So I think part of me is thinking well, actually there is no neurotypical, we're only just discovering that everyone's brain is different and you can't treat them all the same, and that's why there's more and more neurodivergent people, especially women, because of the reasons we get under diagnosed and we switch from. Sorry, the title is destructive and proper.
Speaker 1:Hi Jack.
Speaker 3:Jack, jack, hey, cutie, yeah, totally destroyed my China. Thought you do, though, children do that, though, that's it.
Speaker 1:You will just say about how everybody's brain is just different because, it's abnormal and one is normal.
Speaker 3:Yeah, and I was reading about sort of I'm sure you've heard of like the night watchman and hunter there. Yeah, yeah, yeah, yeah, I know it's just like oh well, that makes for the best. I think as a midwife I've always been very I explain things to women all the time anything to do with pregnancy or breastfeeding or child rearing or anything. I'm always like right. So imagine when you're a cave woman. This is how we've evolved Things like being awake at newborns, being awake at night and breastfeeding hormones being better at night. So imagine that we're cave people. During the day we can't be sat around breastfeeding and be at risk of saber-toothed tigers, so we have to breastfeed in the cave at night time and that's why our babies stay awake at night and that's why our hormones are higher at night. That's always been something I've always been very sort of like interested in the sort of anthropology of it, and I think being a midwife emphasizes that a lot, because there's nothing more human than giving birth, is there? Well, sometimes, then, human feels Well it feels in the human.
Speaker 3:It's not it's why we're all here. It is the essence of biology, isn't it? I forgot what my change of thought was. Yet again, I do this over to you. Oh yes, so then, so that's always been my mind to, anyway. I've always been like, yeah, but we're evolved animals, aren't we? So you've got to look back to why we evolved the way that we are and then to understand how we exist in modern life. So then, so I found out about the ADHD was just an extension of that. So, like, if I mean, I'm saying we don't know how many people play ADHD, I'm just picking 10 percent. There's, like it's lower technically, but obviously it's higher. I'm in the world, I see it. There's more than 10 percent of people that I see. I mean birds of a feather and all that. I'm aware that I self-select my friends, don't I? But yeah, so the whole Night Watchman hunter thing, I was just like, yeah, like if I lived in a tribe I'd be up all night, because I'm up all night.
Speaker 2:Anyway.
Speaker 3:I'm really sort of I'm distracted all the time by things going around on me. So if I'm, if all the children are sleeping and I'm up in my little tribe, I'm being protective because of my neuro-type. And then the adventurousness and not being mischievous, I can see why if a small section of any kind of population has those traits, it would benefit everybody.
Speaker 2:So, yeah, there is, there is, there are lots of theories aren't there about that, about people with ADHD? Have typically allowed the human race to thrive because they're the ones who will take the risks, the ones who embrace change, will explore, passionate about the hyperfocuses. But you think, even now I'm not saying that that all entrepreneurs help humans thrive, but a good amount do, and I think about 90% of entrepreneurs have ADHD as well. You think it's just another form of evolution, isn't it? Another form of progressing societies, almost sometimes.
Speaker 3:But yeah, but we don't live in caveman times, do we? So of the 90% of people who are sort of entrepreneurs, you've also got 40% of people with cannabis use disorder being undiagnosed ADHD, a large proportion of men in prison having undiagnosed ADHD. And I work in child protection and it's really hard for me now that I know I've got ADHD. I see it in some of my women who've got child protection issues For the sake of anonymity. This is a woman who I'm thinking of from long ago, a different place to where I work now, and she was on child protection for, basically for the clinical act, and that was specifically that she had children where she had a small three, four, five year old who had multiple times been found in the street, in the park on his own because he'd got out of the house, because she was in bed. This had happened multiple times. So my region of that is she's staying up late and she's sleeping all day because she's got ADHD and then she wasn't diagnosed but it'd been talked about in a childhood and it was obvious, really obvious, just sitting in, like I go to sit on child protection meetings and stuff.
Speaker 3:So to see an undiagnosed ADHD woman in a child protection conference is painful. It's painful because they're so emotional. Obviously they're terrified. They've got all these people around them. They're really busy. There's loads of people, it's very technical, there's lots of jargon and they just can't process it and they're interrupting because they feel like they have to defend themselves. Because they're social workers, they're on child protection, they need to defend themselves. It's hard for me because it's outside of my scope of practice. I'm not a mental health nurse, I'm not a psychiatrist, I'm a midwife.
Speaker 3:So for me to sit and say I mean, I'm the representative for health, so I do have a role in that child protection. To bring it up, but it's very little I can do really. I can say that I've done a screening with her and I've sent an email to a GP, but we know that doesn't. What's that doing? We?
Speaker 3:talk about putting her on the list for an ADHD clinic and possibly in four or five years time it'll come to something. So yeah, that's it. So her children keep escaping out the house while she's otherwise engaged asleep in bed, although she makes excuses for why she's not there. But I've got ADHD and I've got kids like I know how life is. And the other thing is her home conditions were so bad they had to bring in intervention to help her. So she had someone work with her to keep her house clean and tidy, set up routines.
Speaker 3:And I was in the conference and I'd only just met her and I'd sort of met her and I was like, yep, adhd to the tilt. And the intervention worker was like so we did all this intervention work, we set up routines, and I go back a week later and it's just the same as it was before and in my life I've got ADHD. Another woman has got teenage children. I think the one I emailed you about actually the one who has come home from this is. So I only met her in a sixth pregnancy after I've been dying of a ADHD, and she was so happy that when I explained to her why every single pregnancy she's got to a few weeks got to sort of end the first trimester come off, her end of depression. All her family and the social workers are like no, no, you've got to stay on your end of depression.
Speaker 3:She's like no, but I feel fine. I feel fine. It's a nutrition and dopamine. I know I'm going to go on and when I've had the baby I know that I'll need him once I've had the baby. But I feel fine just now. And then so I was like yeah, of course I understand that.
Speaker 2:And.
Speaker 3:I explained to her why. I explained to her that, why she's going to crash afterwards, why she feels great, and she just felt validated. She was just like thank you, I've been telling people I don't need them and they don't believe me because nobody believes women who have mental health problems, like if they're doing this, or safeguarding issues, or the safeguarding issue, like I said, it's really difficult because at the point that I need them and, like I said, like looking at certain people's what the risks are in terms of the safeguarding, when I can see that they're all ADHD and so this, the one with the six pregnancies, she's got teenagers who are struggling with school. Surprise, surprise. And she, I went to it. There was some plan for her to encourage her children to go to school and involved her with star charts and so and I was just like so and I actually it was pretty low level, I wasn't involved with it, but I asked to be invited to the last meeting because I want, because one of the things on her plan Was that she needs to sort out her mental health, because her mental health is affecting the care of the children and that's the root of the problem and she has not. It's been on this platform, for she's not getting anywhere with this plan because the problem is she's got ADHD, as do quite a lot of the children. Only one of them's diagnosed.
Speaker 3:So I, so I was in the meeting, so I just I just explained, I just said I've been through the ADHD screening with her, I've been through their PHQ and the Gads the anxiety and depression ones and she does score on a PHQ and Zax that Gads will compare it to the ADHD screening and the stuff she's going for ADHD traits for lack of motivation, the restlessness, all of those things that are mental health issues out of context.
Speaker 3:So anyway, so I ended up having to email the social workers and just saying, look I, there's lots of reasons to be highly suspicious that this is a neurodivergent family and I think you need to be really careful not to set them up to fail by making, trying, by giving them things to do Neuro-tepidote.
Speaker 3:Yeah, I phrased it better in the email, obviously, because I wasn't waffling on a podcast, but yeah, basically I was just like I agree that this is a risk, this woman's mental health is a risk, but the plan needs to be changed because she wants to get diagnosed with ADHD and that is the root to open the spine and also because of this she's a children we're having as well. So and I said I've discouraged her from getting her youngest child diagnosed, because I think getting herself diagnosed and dealing with herself will have far more impact than trying to get diagnoses. But at least with small children, like sort of preschool, early school, aged children, and that's all I could do, that's all. And then I'd be wary of I'm not an expert but I'd be wary of setting the family up to fail by making them try to adhere to parents and strategies that do not work for a neuro-atidpical family.
Speaker 1:And I just how interesting, what an interesting study that would make for Kosti, if you have thought of it for the studies.
Speaker 3:Yeah, I know, but I'm in a position where I'm seeing women having the children removed.
Speaker 1:Yeah, but that's a one of the many women who have the children removed through issues of neglect or all those types of issues actually would benefit from an ADHD assessment. So I don't know if you follow I don't know if you can if you follow Carl Mumford on LinkedIn, because I know that's where we became in contact. So Carl Mumford works for Metropolitan Police and he's a late diagnosed male ADHDer and he has instigated this kind of trial assessment for people at the point of arrest that they are assessed for ADHD and that's picking up a lot of you know 80 to 85% of people that are in prison are undiagnosed ADHDers. You know, through the impulse risk taking all those types of things, but it would be interesting.
Speaker 3:Self-medicating symptoms to misuse as well. That's another thing, isn't it? Yeah?
Speaker 1:yeah, but if you could do some type of kind of auditing round about the amount of women that you have and all the traits that they have you know the women on your caseload just from a personal perspective, you know for your own knowledge that might inform at some point if you wanted to study that a bit further, because how helpful would that be and how much money would that save the NHS in the long run? Yeah, yeah. No, it's a way to public health, I mean and no one know.
Speaker 3:I understand completely and if in an idea of what I would want to do just in my little corner of the service, all of the women that I referred to my team, they should all be screen-predicted. Yes, if you're in a position where you're mental health or you're safeguarding issues meaning you need a special midwife and special care then there's an issue. Isn't there? But the reason that isn't a solution is that I could. We could say we get 50 women, let's say 50 women a month on our team at any one time, because there's a few of us. If we screen every single woman-fraid HD when they're referred to us, we're going to end up with a lot of positive screens that we can't do anything with. I can't actually do them. I can't send them all to the GP.
Speaker 2:That's what I was going to say. Is that even people to assessment is great, but it is great for most of us.
Speaker 2:What other help? Because you think of these families? I'm imagining they're coming from poor socioeconomic backgrounds. You know patterns of behaviour through generations who have probably also had ADHD, whether issues such as, like you say, self-medication with alcohol, drugs, food, whatever, the lack of coping skills is just filtered through as well as the kind of the pathology of having ADHD, and it's almost like there's always been a population of people that are kind of not purposefully brushed to the side. But are you know? Well, they've got poor coping skills, so we'll go in and clean the house.
Speaker 3:But why? Why do?
Speaker 2:you have poor coping skills. So it's so much more isn't it than an assessment. It's obviously it's medication which most of us find really, really effective, but there's going to be entrenched, kind of entrenched deficits of skills and coping skills, if that's what they've seen before them, but my argument to that would be, though it would be that you implement a suitable strategy for that family, not that you get them educated, not that they need to go to the GP.
Speaker 1:It's that you have a neurotypical set of strategies and then you have a neurodivergent set of strategies that it's applied to that care pathway for their whole social and health.
Speaker 3:And that's sort of the str that's what I've seen for me to do in my job immediately because it has to be done. I can't keep seeing women who I know have got ADHD struggling so badly because it's getting a bit better. In the mental health side of thing I've noticed a lot more women. It's being picked up when they're speaking to therapists and stuff. But again, I was told by a consultant psychiatrist on the NHS that I had ADHD and it didn't help me get a diagnosis, it was useless. She's like you need to go to your GP. And so I was like, oh great, so can you diagnose me under this service? No, we don't do it. You need to go to your GP.
Speaker 3:So I'm probably a student who I don't know, I do love my GP, but he was very dismissive of ADHD At that time. I wasn't fully convinced that I had it anyway, so I hadn't, and the conversation was all right. Like he made me aware of things that are important, Like he is suspicious of all these new ADHD clinics and the rigorousness of their assessment. Valid, but the thing that he said to me at the time I was kind of like, yeah, yeah, that makes sense.
Speaker 3:When I first got told it was ADHD before I got diagnosed, what I was wary of because I know I have a propensity to decide that something is what it is and focus on it I have a precept that I didn't want to think. How ironic is that, though, I know, isn't it? So my, I was. I was like, well, I know for a fact that I am the type of person I spent a year thinking my daughter about autism because of a trait. So, because I didn't know anything about ADHD in girls and women. Like all of the traits that made me think she was autistic, the sensory stuff, the explosive outburst, the impulsiveness, all that kind of stuff, all ADHD. But I didn't know that. Done it again. I lost my train of thought.
Speaker 1:I mean, I've lost my train of thought as well. Yeah, you probably didn't have it.
Speaker 3:I've not got it, I'm not trying.
Speaker 3:Back to what I actually. The reason I opened my mouth I went back to is what I can do in my role. Is I? What I want to do in my role is women don't aren't going to be able to get diagnosed quickly, especially the women that I work with. I don't want, as an NHS midwife, I'm not telling people to go private. I'm not. I don't want to encourage it because I'm a socialist. And also if I say, oh, there's a private clinic in the town next door, that they are assuming that as the NHS is telling them, go and see this doctor and I'm not responsible for that, I'm not.
Speaker 1:But the thing that I eat to treat. They can go to the GP and say I choose for you to review.
Speaker 3:They can, and I do tell them about that. What I'm talking about is specific giving them recommendations for specific clinics and stuff. Oh yeah, and I just let them know that there is. It is available privately, that they would need to just resell. I tell them about right to choose.
Speaker 3:But, to be honest, things like UK psychiatry aren't much better now because they're now over subscribed. So I was reading just on Reddit or whatever, and people are waiting like seven, eight months for the initial consultation. They're having a consultation and there have been multiple consultations in order to get diagnosed and then, once the diagnosed, they then put on a waiting list for medication. So they spend months and months waiting for the diagnosis. They spend a good year or so having appointments to confirm the diagnosis. Then they get put on a waiting list to see a psychiatrist about titration. So even going to UK psychiatry just as the example it's not. It's not much better than going on the NHS. It is better but it's not. It's not fair. It's not fair Because the sort of thinking about ADHD to get in diagnosis is a horrible period. Get in diagnosed. I started medications to get away, but knowing that you've got ADHD and that you want medication to then have to sit at home struggling for months and months and months until you can finally get someone to titrate you.
Speaker 2:it pains me. This is what we talk about quite a lot, is it's so? It can be so manageable with medication, with other strategies? Education is a big one, isn't it? It's extremely frustrating that there's a lack of access to that. I wonder, did you I hope you don't mind me asking did you? When you went for your, when you got your diagnosis, did you have to go through a QB test?
Speaker 3:I don't think so, because I don't know what that is. What's that?
Speaker 2:Unless I didn't I didn't know it. It's FDA approved, it's actually a medical device and it's used for diagnostic purposes in ADHD, so it's basically the most boring thing you can do. My daughter had to do it so again we had to go privately for her. But the company we use use a QB test. I think it's used quite routinely in America. Like I said, I think it's an age diagnosis and I think it can diagnose, but it's pretty definitive in lots of ways If you have that, and then you have all of these other areas.
Speaker 3:And what is it? What is it?
Speaker 2:Yeah, sorry, there's me rabbitting on. So it's basically it's a test that you do online. So you have make sure you have a webcam on you. So the webcam is measuring a lot of your actions, your motor skills, your movements, and you get given a set of instructions whereby I can't remember which way round it is, but basically you have images coming up on the screen. So all the while you're being filmed, so an image will come up on the screen of a circle and then it'll be a circle with a cross in it, and every time you see a circle with a cross in it you have to press the space bar on your keyboard and it go on on and it could be quite quick.
Speaker 2:Now I watched my daughter do this. Now my daughter is you would never outwardly suggest that she had ADHD. It was only from my, obviously my, my kind of working knowledge, now my personal knowledge as well, mostly that we put up for an assessment and then this was part of the assessment, so she had to sit there. Now she has no problems in school or anything. No ones ever flagged up any hyperactivity or or kind of disturbed, you know, being disruptive or anything like that. So she masks very well, like a lot of us women do and men. So she had to sit on the stool and she was sat on my like it's like an ergonomic stool, you know, the ones where you kneel on and your bum kind of sits on the other bit. Oh yeah, yeah.
Speaker 2:There were two tiers to the stool right, so she sat on the stool. She's in front of the laptop. The web comes on her. I sat just to the side of the back. The webcam didn't catch me. I was thinking I don't know what this is about. I'm so I really, and I couldn't find anything on the internet about what they're looking for.
Speaker 2:So she had to just press this spacebar when the circle came up with a cross in it. And if it came up with no cross, you don't press the spacebar. And this went on for 15 minutes, right, oh my Lord, I, she, she couldn't. She started off, okay, and she was like oh, this is a bit. And it said in the instructions don't lean on the table. You know, don't lean forward and put your elbows on the table or anything like that. She started doing that. I was like sit back, can't do that. Then she was going from one part of the stool onto the other. She's like fidgeting, pulling her, her braids, pulling all these braids, put me, like you Still, and she. So she stopped concentrating. She didn't. She didn't carry on with pressing it when she was ready, she just kept going on board. Can we go on board and board and board.
Speaker 2:So when we got her results, obviously we had all the assessments like you've described, that we had to do and school had to give, give lots of information to the clinic. But the on the QB test, the feedback we got was she got the highest score possible for a positive diagnosis of ADHD. I was like, yeah, you got 100%, sweetie, really good. You would never know it, you wouldn't know if you, if you just chatting to her, she's you know, you would just wouldn't know it. But when I speak to psychiatrists I got a really better overview and how the, how the camera is measuring your, like I said, measuring your movements, measuring how impulsive you are with pressing the, the space key. It sounds extremely simple, doesn't it? But, like I said, it is an approved medical device, yeah.
Speaker 3:Sometimes, the simple things are the best, though, aren't they, like I know, I know.
Speaker 2:So I just I just wonder. That's why I was just interested. I don't know much more than that, but I just wonder if if devices such as that would help speed up diagnosis and and kind of be a bit more like you said, rather than people wanting to go back time and time again almost like to prove they've got ADHD.
Speaker 3:But I think that that's an NHS thing. I think, like I, I think the way I got diagnosed I don't think there's a reason other than a lack of psychiatrists that would cut that. I went, I filled in the forms, I had a three hour video video consultation with him. He was visually observing me.
Speaker 3:Three hours is a long time to be sat in this chair and I remember, towards the end, one of the questions we had like two and a half hours talking about everything and then the, just at the last five minutes is when he went through the you know the 18 point checklist and then sort of and I remember him saying so, do you find it difficult to sit still? I just said to him well, it depends what you mean by sitting still. Like I'm sitting still right now, but I'm on like a swizzly chair and I've been, so he could see throughout the whole thing that I was in loads, because three hours sat in one chair is a really long time. But yeah, like, yeah, some of the questions that's. I mean it's it's a bit of a diversion, but that's what one of the things I struggle with. I think, not struggle with, but one of the things that I want to change, apart from the name of ADHD, like I don't have just different. Like I can concentrate, this is, this is the thing.
Speaker 1:So if you're interested, you can concentrate. Yeah, have a lack of attention?
Speaker 3:No, no, and if the deadlines coming up, I can concentrate. You know, like if I'm trying to avoid doing something else, I can concentrate, like my, my concentration is different. It's not a deficit and I'm obviously you agree with that, you know, don't you? But something that makes you with the 18 point checklist is that it is not fit for purpose and it's out of date. It all of this, all of the things are observable from the outside and not necessarily the core traits of ADHD, like when it was like I said when the when the doctor's like, oh, I think you've got ADHD, I'm like, well, I can concentrate fine and I'm not hyperactive because I don't identify those things as like I do concentrate fine because I've always had this brain. I've always concentrated like this. It doesn't feel different to me. So, to be told, actually your brain works different and that's why you're struggling. That's fine, I get that. But asking somebody, do you struggle to pay attention? They're going to say no.
Speaker 3:Another one is like where you would a daydreamer as a child? I answered no to that because I wasn't a daydreamer. In my head, daydreaming is sitting fantasizing about the future, baking up stories. People might have thought that was a daydreamer child because I was caught up in my thoughts. But I wouldn't have been. I'd have been rehearsing conversations, I'd have been solving problems in my head, I'd have been thinking about you know, in my mind that's not daydreaming. So when? So, when I do the screening with people and I know that they haven't had any education about ADHD, when I'm screened, I don't trust it, because you can easily say no to something, because the way the question and phrase doesn't actually fit with you, like the daydreamer is a perfect example. Like, does it look to me? Does it look to other people? Like I'm a daydreamer? Yes, do I think I'm a?
Speaker 1:daydreamer? No, I don't. It depends on your definition of a daydreamer. Kirsty. I wanted to ask a question have you come up against much resistance within your trust or kind of other professionals questioning you going through this? You know the online assessment.
Speaker 3:It's been difficult because I moved trust. I've been at my new trust a year and I started in July. I was struggling, to be honest. Actually, I started in July and I went. I started my new job on the 18th of July because that's one of my sick note from my last job run out and if I had been in the same trust I probably would have extended the sick note because I didn't feel well enough.
Speaker 3:Obviously it was ADHD, but at the time I didn't know that. So I went back so and then that was okay, like I've got a new job. It was a new job, it was, you know, so it was all alright. So then when I went off, I worked at my last trust for 10 years as a midwife and I trained there and I used to work in voluntary doing breastfeeding stuff when I was younger before, so everyone knew me really well and I wouldn't have felt judged. I think they probably would have found it quite amusing and with you know, like my friends from my old life, I've got ADHD. They might have been like oh yes, that makes perfect sense. This is why we do they look just stupid.
Speaker 3:They see things like hmm, that doesn't surprise me yeah yeah, yeah, I've got a friend who was diagnosed at 36 with ADHD, and a friend from childhood. And when she told me I was like, of course, because I've known her from being 12. So I was like, of course she's got ADHD. So when the psychiatrist told me, I went to my best friend. We grew up, all three of us grew up together.
Speaker 3:So I went to my other woman who hasn't got ADHD and I said to her I don't like, the doctor said this I'm not really sure. Do you think, thinking that I might get that reaction from her, I might get her going? Oh, of course, no, I know. What she said was Well, because you do need to medicated, don't you? She was right. She was right. What she was saying is you're struggling with something, you're on medication. It's not helping. If the doctor says you've got ADHD, then they're probably right. But, like I said, her words were well, you do need to be medicated, don't you? Cheers, thanks, yeah, so I didn't get that. But not a lot of people, not everyone does does it Like I? Just like I did when I started the medication. I didn't get that. Oh my God, likeable moment. My brain is working better for the first time in my life. I can't believe, you know, I can't believe other people are like this. I didn't get that really.
Speaker 1:What did you get from your medication? What have got of the experience? That's been the benefit from the medication.
Speaker 3:Well, so I started it in April. I did three weeks on Elvance, which was horrendous. They come down the wear off, for that just was unbearable.
Speaker 1:Like when it's weird and often the evening.
Speaker 3:Yeah, I'd feel like I mean, I'm a 41 year old woman. I've you know, I've been I've not been a mother in a health professional my whole life, so I have tried experimenting with recreational stuff. So it felt like I was up. And then when it worked, it was okay, I felt. I felt a bit calmer, I could see that it was sort of helping a bit. And then that was only 30 milligrams.
Speaker 3:Suppose I crash out of it really early by five hours, six hours after taking it. I just felt horrendous in terms of like an ADHD rebound, I suppose, but also my emotional issues where I was big emotions, meltdowns, all that kind of stuff. By the end of the three weeks I had like a blood blister here under my eye that just appeared from nowhere and it was probably because I was having sobbing meltdowns every night when the meds were wearing off. But I stuck at it because I wanted them to work. I wasn't like I'd gone through all this and been. I'd got the tablets. I was so excited for them to come, so it took me. I was just like it'll get better.
Speaker 1:It'll get better, yes, and there's a kind of, there's almost a sense of denial, isn't there that you're thinking I've got the medication, now this has to work, yeah yeah, yeah, this is a good thing, I'm full Because I've tried everything, yeah, so the LVANs did not work for me at all.
Speaker 3:There was a point where I took 31 months and I'd been on it like a week or so. So I took 30 and then it got to about six. Seven hours later I was crashing out a bit and I thought stop it. I just took another one, another 30. So I was sort of like 60 over the day.
Speaker 3:And this is this is one of the moments where I, like I have 100% guide HD, because it was speed, it was Lisdak's amphetamine, so I was literally taking amphetamine and because I took more than I was supposed to, I was comatose, I was just. It was like I'd had heroin or something. I'd had heroin, but I just there was no fidgetiness in my body. My body felt calm and heavy and relaxed and sedated. Really, I wasn't really making conversation with my partner, I was just chilling, like probably. And that was then, and that was the point where I was like this is how your brain reacts to amphetamine.
Speaker 3:So obviously I've got ADHD because because when I took the second tablet, the risk assessment I'd done in my head was I'm not awake tomorrow, so if I can't sleep because of it, not a big deal. If I can't eat, it's fine, I'll eat tomorrow. So all the things that I expected to happen by taking too much amphetamine. I got the exact opposite and I was like, oh my God, I've got ADHD, because no other people wouldn't take a second bump of speed and decide they feel like they've had heroin, but anyway. So I got rid of the elephants because it just wasn't for me, and then I started on Concerta. Concerta works loads better for me. I do get a crack. It still wears off too quickly. I have to take an afternoon dose because my body just burns. It stings up really.
Speaker 1:And some people just do, don't they? Some people just need a second tablet.
Speaker 3:Yeah, so I take 36 in the morning and then I take 18. I'm trying to find the right time to take it to smooth out. At the moment I'm coming up and then I take second one and there's like a bit of a gap in the middle of the day where I don't speak to me or expect me to think so. I'm trying to get rid of that at the moment, and I've not really been that successful yet.
Speaker 1:But the Concerta, is that the?
Speaker 3:methylphenidate. Yeah, with the little fancy space age capsule. That amazes me that they've invented this little thing. So I still burn through the stings really quick, but the delivery method means that I do get a better sort of run at it, but I do still need a top up.
Speaker 3:So at the moment I'm on too high of a dose. Good, to go back to the hormonal thing, like I said, my ADHD I can't distinguish it from my hormones. I only know about it because of the effects on my hormones and my brain, so it's not distinguishable.
Speaker 2:I know everyone's different.
Speaker 3:Other women don't do much Other women probably suffer more like it, but for me my ADHD and my hormones are the same thing. I can't distinguish them, which has been difficult with the titration my psychiatrist obviously. Anytime I speak to anyone about anything, it's always like well, I'm on day eight today. I constantly know what day I'm on in my cycle because it matters. Day seven is different to day 14, which is different to day 21, which is different to day 28. I'm a different person, yeah, and it's like a justification. So I struggled.
Speaker 3:When I started the titration, when I got the first prescription, I was around about day 14. So I went straight into my Luteal phase on the medicine. It was the low dose. It wasn't helpful. It was the L-vans as well. So I'm at a point now. I found the titration really difficult because the medication that I had that day was only how it affected me that day, like 36 and 18, which is what I'm on now. I'm on it today. I'm on day 10 of my cycle now, so full of estrogen. I don't need this much methylphenidate. It feels really harsh when it comes up. I get dips when it starts to wear off before the next dose, whereas when I decided 36 was too much before the doctor gave me. I had some 27s. I took a 27 in the morning and an 18 and it was terrible. It was like I wasn't on anything. I was on day 25 of my cycle, so I need to find that medicine.
Speaker 1:So that's what I'm finding really difficult at the moment that begs the question to me of is there anybody out there who's treating ADHD with an estrogen supplement? Well, actually, I think there's no.
Speaker 3:I think there probably is, because when I had the first consultation with my psychiatrist he wasn't very up on the hormonal stuff. As far as I know, it didn't come into the discussion much, but it was an assessment. The assessment is the assessment, isn't it? There isn't room to talk about it.
Speaker 1:I had to go to the books to dive at night.
Speaker 3:So when I first started talking to him, he was like well, what do you think is going on with the PMDD and ADHD? And I said well, I think I am super sensitive to my hormones because I've got ADHD.
Speaker 3:And he was like yeah, yeah that's what's going on and that was the extent of the conversation about my hormones really. But then with the titration it's like I need to be able to decide every day which dose of medication I have, because I don't need this much methylphenidate when I'm full of estrogen. I need a lot of methylphenidate when I'm full of progesterone.
Speaker 1:Yeah, and I mean that might be. I go off my head here on research tangents all the time, but wouldn't that be an interesting pilot as well, you know, for you to kind of map out how the medication affects you on those different days. So that that's your plan then. So that go over in day 10. So that requires 36 in the 18 versus day 26, when you might just need the 27 in the 18 type thing. It just is very individual to you.
Speaker 3:Yeah, well, I've got, like I said, I'm still titrating, so I sort of 36 and 18 is where I am now. That's the most effective dose I've had so far. I feel like it needs to come down on certain days of my cycle. So at my next review I'm going to ask for. It's hard because there is difficult with the concert.
Speaker 3:With the L-vab, you can dissolve it in water and just take as much as you want, whereas with the concert you can't split the actual capsules, can you? So you've got to have them right in capsule. So if I don't need 36 but 18 is too low, I don't have a dose that's useful for me. So I'm going to ask for some 27s, because I think day 7 to day 14 is when my estrogen is rising. I feel quite hyper when I take the medication. I don't need it, whereas obviously later on. So I think what he needs to do is he needs to give me some 27, some 18s and some 36. Or maybe just some 27s and loads of 18s, because I can take it each week. Yeah, you can just double the.
Speaker 3:It's a conversation to have with him on Tuesday, but I think Because I've read it quite a lot and I think it's common for women to know that they're worse in the week before the period and they need more medication in the week before the period but I do wonder if I'm more sensitive than other women, because it's not as simple as that. Day 1 to day 5 is different. Today 5 to day 10, like it. Every single day is different based on where I am. And I find, in terms of titration, I do find that difficult because my doctor I feel like he wants me to just find my dose and go back to the baby, but it's like, well, that's fine, but I need a different dose every single day of my life and I'm 41. So perimenopause is just round the corner, so it's going to be.
Speaker 1:Yeah, so it might actually take you a longer period of time to stabilise your ADHD symptoms.
Speaker 3:Well, I might run out of money first, so we'll just have to save it. It's expensive, isn't it what I would?
Speaker 1:really like to see, kirsty, is, you know, pilot studies being done within gynecology. So when you know women are going to the gynecologist because of their PMDD symptoms, yeah, for them then to have a, you know, perhaps I don't know what that looks like, but a better kind of multidisciplinary relationship with a psychiatrist who has a special interest in ADHD and those two. You know those two disciplines work together to achieve, but then typically women's health is just so poorly researched, you know, I just I think there's so much more to be done. I mean it's very interesting.
Speaker 3:I think there's a lot of you know, there's a lot of scope for improvement in that I think there's an absolute dearth of information about all of it about women with ADHD, about women in their hormones, about women and ADHD and their hormones, about PMDD, about how antidepressants affects PMDD, how they affect women with ADHD. It's just yeah, we're all blind, aren't?
Speaker 1:we, we're all blind. And then throw pregnancy and a baby into the mix and yeah, it just kind of makes it a bit more complicated. I suppose we're at a roundup actually, because that's the only one.
Speaker 3:Are they also muffled on with that, actually making any good points?
Speaker 1:No, no, no. It's really interesting, I think, and it sparked a lot of you know kind of.
Speaker 3:I think research needs to be better. Yeah, I think research needs to be better, and I think it's quite niche, isn't it? Women with ADHD is a small percentage of the population. Pregnant women are a small percentage of the population Pregnant women with ADHD and it's all a shrunk ADHD women with severe PMS it's like it's all completely under-researched. I had a conversation in clinic actually with one of the doctors. Just I was off my meds so I was waffling crap in clinic.
Speaker 1:I was off my meds, that too.
Speaker 3:I hadn't filled my prescription, so I was in clinic and I was just Because one of my ADHD women was in clinic and I was like, because they were like, oh, the sonographer asked me to come in after the woman left and she was like, oh, so I just I'm a bit worried about this woman because we were doing this scan and I was trying it and all the time she was on her phone and she was like, oh, she's got ADHD. And she was like, oh, okay, that makes sense then. And it's just little things like that, especially in child protection. She keeps arguing with people, she keeps doing it and she won't stay in the room, she's never paying attention. It's like she's got ADHD.
Speaker 1:And those things that are getting constantly fed back to the crucial work of it.
Speaker 3:Yeah, what she's doing is how she's coping with this situation. It's not a sin that she's not engaged with the process. It's not a sin that she's not engaging with the baby. I was at a child protection conference and she was diagnosed ADHD-er and I was sat right next to her and she spent a lot of time checking her phone and I was thinking she's doing it to keep her. She's keeping herself calm by distracting herself. But I was thinking you're in a child protection conference and all of the social workers and all these professionals are judging you on how engaged you are in this process. Because you're engaging in this process, they say that to be care and love for your baby. So if you're not engaged with the process, they think you don't care about your baby, but if you don't accommodate for ADHD, it's.
Speaker 1:Exactly because all those things that they're assessing is based on a neurotypical presentation of a parent, isn't it? Or a pregnant woman.
Speaker 3:So actually there's so much to be looked at in terms of Diagnosed versus undiagnosed, and yeah, you can imagine as an ADHD woman if you were in that situation and you've been sort of having a lot of input from social workers. They can be quite judgmental sometimes Not always, but they can be.
Speaker 1:Yeah, but you certainly have the perfection that you're being judged, I'm sure. What 100%? Well?
Speaker 3:you are, aren't you? You are. You are, Regardless of how nice a social worker is, how valid their concerns are. You are being judged for your parenting because somebody's had to step in, because we don't think your children are safe. So they are being judged, which is, you know, like we've got to protect children, haven't we? But to see that happen repeatedly, oh no, that's what's nice. So imagine you're an ADHD woman. You've had social workers involved quite a lot of time. You've got multiple children, multiple complexities. You sit down in a meeting with them and they say, right, so have you been getting the children up every morning on time to get them to school? How's the star chart going? As a woman with ADHD, already just the word star chart and I'm like, oh, that brings me back to having some more children and not being able to do the stuff that the books told me. Today I can't do that.
Speaker 3:I feel like a failure when I look at a star chart that is half finished when I start at the start zone, so to then be in that arena as well and being judged for the fact that you can't stick to a star chart if you don't know about ADHD you're just going to think I am a terrible parent.
Speaker 1:I deserve to have my children raised or whatever I mean. It's a huge area. I'm sure we could chat about it all day.
Speaker 3:Yeah, I know well, obviously, but like the meddling took with the DRA divergent leading safeguarding at my hospital. Because what I want is I want information to give to social workers about ADHD and how that affects women's parenting and how that affects their ability to stick to a child protection plan. Absolutely, because it's not there and I've mentioned it in multiple child protection conferences, like a lot of this is about ADHD. I've done the screening, chinese GoSwitch, ep, blah, blah, blah and they might. I've got them out there. Okay, the Suspicions Month got ADHD, but it's written down and that's it. The suspicion is actually that ADHD she needs to sort it out, but then that's not then transferred to the situation that you're in Speaking of what?
Speaker 1:I think it's important. I mean, that's a lot to do with education of the health professionals as well, isn't it? Because the only I mean the rest of the general public probably only have the impression that it's naughty schoolboys swinging in their tails or whatever they do.
Speaker 3:That's why I'm looking through those 18 point checklist. When I first heard about, when I first suggested that I had ADHD, I didn't identify with any of them. But I went through my assessment. At the end of the assessment he did the checklist and I had 17 out of 18. So I do have all of those traits but it just presents in a different way for you. That's a checklist for teachers and parents to identify children who are showing obvious signs of having ADHD. It doesn't get the route, doesn't get to the root of the neurodivergent. It just catalogs some of the presenting factors that are present in some people with ADHD and that's why it needs to be changed, because loads of people don't. I've identified with those symptoms and I see it myself.
Speaker 3:I can have a woman who is clearly ADHD to the roof and then I sit down with the assessment and she's answering notes for a lot of the questions because of her perception of herself and that it's just not a first green into it. It misses too many people and it gives the impression that ADHD is just an issue with attention and hyperactivity and it's not at all. Those are the least of my issues the attention and the hyperactivity. They're the least of my issues. My issue is my emotional dysregulation, my executive function and my ability to withstand stress because of my neurotype. It's not about being distractible. It's not about not concentrating. I can do that all right. I don't do it the same as other people, but I'm 41 and I'm a health professional. I don't give my age to you, yeah, so for that to be the defining characteristics of it. I think that is the problem. We need a better screening tool for it that accounts for the neurotype, not the presenting symptoms of boys in the 80s.
Speaker 1:You get exactly. Yeah, yeah, god. It's such a massive issue, isn't it? But it's been so interesting chatting to you. We must keep in touch because I think, as things evolve, there are certainly collaborations that can be, made.
Speaker 3:Yeah, because I feel like like I went unlinked at any time. So I mean I went unlinked in, I don't. I've sort of gradually reduced social media to nothing over the years.
Speaker 3:My anxiety. Now, I know I just I can't deal with my phone having notifications all the time, so I don't have any social media whatsoever, apart from my date, which is endlessly. Although I have a time on my phone because an hour a day is enough, I don't need to spend nine hours a day on my date, which my brain loves. My brain loves being on my date. So when I'm linked in thinking, I need to keep up professionally and I've only used it once and I saw you know that. Ah, oh, my God, please, you're like bro, look at the boxes, look at the boxes. Yeah, so I think I think more connections between professionals who understand ADHD and understand the gaps that need to be filled to protect women like us, then so, and things like that you sent me I've not looked at it yet, but they're RSD and labor and stuff. Yeah, yeah, yeah, things like that, like that RSD, hyper focus none of that is on the checklist.
Speaker 1:Exactly yeah. Rejection sensitivity is probably one of the symptoms that's had the most impact in my life, and negatively and positively, but it certainly made me a people pleaser my whole life.
Speaker 3:Yeah.
Speaker 1:But anyway that's. It would be great to chat to you again though, so let's keep in touch obviously.
Speaker 3:I've got you in the bus, so what's that? Probably the easiest way to get in touch with me, yeah, yeah. I mean with anything else.
Speaker 1:I'll WhatsApp you the edited episode so that you can hear it before it goes out to public.
Speaker 3:Yeah, and I'd love any research or info that you've got that would help my women, my age too.
Speaker 1:Yeah, yeah, absolutely, absolutely. That's definitely twiddling away in my brain now, yeah, yeah, and yeah, yeah.
Speaker 3:I think we should definitely collaborate on something. Somebody needs to do something, and who's going to do it if it's not us? That's the thing, isn't it? Yeah, where the ones that have the knowledge that is missing.
Speaker 1:And I think it's so important to hand this those ADHD hyperfixes for a positive cause, isn't it? I think it's really important.
Speaker 3:But anyway I'll let you go. Yeah, thanks for your time.
Speaker 1:And we'll be in touch soon.
Speaker 3:Obviously. I mean just one thing obviously you're a midwife, but when you're doing the editing, can you really cut? I've said a lot about my patience. Can you just be conscious of making sure that it's definitely sounds confidential? Yes, I didn't mention any neighbours in the dead, but you've got the character of this stuff, yeah.
Speaker 1:I know, and you don't know who's listening. Ok, I'll speak to you soon. Take care and enjoy the rest of your day. Bye, bye. Nice to meet you. Bye, bye.