82 – The hidden link between epilepsy and hormones

0:02So Sian it's lovely to have you on my podcast. I've known you for quite a few years now actually. How many years is it? Four years I've been working with you with Newson Health. So you're a nurse and actually over four years ago you reached out to me, lots of people reached out to me on email for advice about a patient and you reached out and we sort of had lots of correspondence over emails and then I said to you how about you working in the hospital? clinic and that's what you've done. I love it, love it. Yeah and it's great because you know when I started the clinic and left general practice I thought oh maybe I'll just see the same sort of person all the time and I'll get a bit fed up because I really like variety but actually we learn so much from our patients and we see patients of all ages, of all ethnicities, of all backgrounds backgrounds and also a lot of them have other conditions as well, don't they?

0:58They do. Many of them do, yes. Yeah, which is what we're used to, you know, working in general practice. We're used to people with more than one condition and we can cope with that. So today we're going to talk about epilepsy, actually, and I haven't done a podcast about this before. And it's very interesting because I quite like history and I was reading a book that was written in the 1800s by a physician who helped people with, well, he didn't know at the time about hormones, but about women who had problems with their mental health and with other symptoms, especially around their periods. And he talked about seizures a lot.

1:37And there's a whole chapter in this book about women having seizures. And some of them were very catastrophic. and some of them were very severe. And he documented that some of these women had seizures before their bleeding, so before their periods. And it's been very well documented for years. Now, I did a neurology job many years ago in 1994. I worked with a lovely neurologist and we often saw young women who were newly diagnosed with epilepsy and I never asked about their hormones. Okay, but there is an association, isn't there? There is, there is. Apparently, one in three women have what they call cyclical epilepsy.

2:20It's called catamenial epilepsy, which their seizures can be affected with their cycle. So some women find they get some more in the middle of the month or some it may be before a period. It varies massively, but it can be quite disruptive with that. And it can sometimes be triggered quite early when people are going through puberty, they have all sorts of changes in their hormones. And the brain likes everything the same, doesn't it? It likes calmness and stability. So if we've got these hormones that we make in our brain as well, and they work in our brain, if we've got those levels going up and down, it can trigger all sorts of things, including seizures, can't it?

2:59Pregnancy as well, it can change. Some women, I did epilepsy clinics when I was in primary care. And one lady, when she was pregnant, didn't have a single seizure. The day she gave birth, they came back with a bang. Massively, hormones have such a big effect on it. Yeah, it's very interesting, isn't it? And I don't think we think about hormones enough in a general way, thinking about epilepsy as well, because there's lots of medications, obviously, that are given for epilepsy, but a lot of them have side effects and some of them have longer-term health risks as well, don't they? They do, yeah.

3:37Can you explain what some of those side effects and risks are? Well, are we talking about menopause as in change of hormones? So no, with some of the epilepsy medication that's given, because some of them can cause side effects, just things like nausea and weight gain. Yeah, tiredness affect them more, because obviously a lot of it works on the brain as well to keep things down, so it can have a lot of side effects with it. And they can interact with other medications as well. And that's something you always have to be really careful with, with any medication, but certainly with some of the epilepsy drugs as well.

4:15They can, yes. Especially the enzyme-inducing epilepsy medications. Other things can interact with it. And like the contraceptive pill potentially can affect it. So they either increase the pill or, you know, it's a very fine line of making things. It doesn't affect the seizure control as well where possible. Yes, and I've thought about this a lot actually, because when I was doing family planning training, I was always taught about the interactions, quite rightly, of contraception with epilepsy medications, especially the ones that induce enzymes because they get metabolized differently. And I was always a bit scared seeing women who needed contraception thinking, oh, what am I going to do?

4:54But actually, there are none hormonal methods that we can advise women to have. We sometimes forget that as well. But also, I didn't really know then, many years ago, the role of these synthetic hormones in our brain. And they are very different chemical structure to our natural hormones. So they can block our natural hormones working, but they can also have negative effects on the brain. And so, I mean, I'm not sure there are good studies, but you wonder sometimes whether having a synthetic contraception can actually be negative for some women with epilepsy. Could possibly be, yeah, with the progesterone.

5:33With the natural hormones, the natural progesterone has anti-seizure properties and the oestrogen can lower the seizure threshold. So obviously the cycle, if it's cyclical, it can make a massive difference with the seizure frequency. Yeah, and we need to be really mindful of that because that's one of the reasons why seizures can become more frequent or start actually in the perimenopause and menopause. And often people have a relative progesterone deficiency before even estradiol drops as well. And people sometimes get very confused, don't they, with progesterone and progestogens because progesterone is the lovely natural hormone and progestogens are the synthetic ones.

6:14but you're very right in saying that progesterone can be anti-seizure so it can reduce frequency and severity of seizures as well, can't it? So you often find that in the second half of the cycle from ovulation they can have fewer seizures but the first half of the cycle, that's sometimes when they can get an increase in seizures as well. And with the perimenopause, the hormones are fluctuating so much they don't know where they are because they can't predict or it usually comes in the middle of the month. So they can sort of allow for that. That doesn't happen. So that can be a really stressful time.

6:49Yeah. And I think also a lot of general physicians, neurologists aren't trained in prescribing hormones either. So it's a lot easier for them often to think about, let's just give you some seizure medication and not talk about hormones. Whereas it can be very satisfying having the right dose of hormones for women with seizures because if we can get it right and balance those hormones and even balancing the oestradiol, the progesterone, testosterone as well and give them the same amount every day, it can actually be very beneficial for people. It can, yes. I've got one lady that I've seen that's come to us and she's 44, came perimenopausal age 40.

7:36And also research does show that some women who have frequent seizures may go through the perimenopause a bit earlier. than the average age for menopause. Her seizures changed. She had temporal obe epilepsy, daily focal seizures, two or three tonic-clonic seizures every year. That was her normal amount of seizures and she knew they would never be completely controlled. She became perimenopausal, seizure frequency increased, night sweats, she was having anxiety, she wasn't sleeping, and tiredness was one of her trigger factors. So of course she ended up with more seizures, but now she's on HRT and it's back to where she was before and feels fabulous.

8:17Isn't that amazing? Because it's not just about having seizures, it's about not being able to be so independent, not being able to drive. You have to be really careful. I mean, people have to be careful, obviously, when they've had a history of seizures but it can really reduce and limit their lives as well, can't it? It really affected her massively because she worked full-time, she exercised every day and it just threw it all out completely but when she went on the hrt she went on continuous progesterone rather than with because her cycle was up and down but then you know the normal cyclical regime we would use wouldn't what could have interfered with her cycle so she was on steady progesterone on a transdermal patch and it just sort of helped to balance things out a bit more and she's also on testosterone and she just feels really good She's got a zest for life back.

9:07It's great. It's amazing, isn't it? Yes. And so, because often when people are perimenopausal, we start the progesterone for two out of four weeks and people still have periods. But there's no reason why we can't just start with a continuous progesterone. And that's what we did. Yes. Which is great. Started with that first because of the anti-seizure properties, then brought in the oestrogen, then brought in the testosterone. And it worked really well. Which is really important because a lot of the time we talk more and more about individualising care, obviously. but also individualising hormones.

9:35Because in the past, it's been very sort of formulaic. You give estrogen and progesterone together, then you might give testosterone. And certainly we've all learnt over the last few years, especially because we've got bigger in the clinic, we're sharing our experiences and our knowledge, that giving those hormones separately, starting them at the right time, at the right dose for the right person, really can make a difference, can't it? hugely it is such an individual approach the longer i do this job i don't think any ladies is the same any of them at all no we have a team's chat going on all the time and it's oh constantly it's just brilliant what do you think about this i know and every so often someone's asked something and we and we all go i'm not sure let us know how you get on and um it's very supportive though because medicine you know and it should be like this we all are all different You know, the way we respond to different foods, to different exercise, to, you know, our personalities are different.

10:33Our brains are all different. And so I know you've been doing a training as well for healthcare professionals, haven't you? You've written a great article about epilepsy and you've been doing some training. And what's been the response when you've been teaching people about hormones and epilepsy? They're just really pleased because it's such an area where there's a fear, isn't it? Yes, it's a patient. And do they go to the GP? The GP, they're not specialists. Some of them are not specialists with hormone replacement therapy either, but they refer to neurology. Neurologists are not specialists.

11:07So I did a talk last year for epilepsy, the annual conference for the epilepsy specialist nurses, and they gained so much information and it empowered them just to have that conversation with the patient to go through things. And I've worked, as you know, with Epilepsy Action. and they've devised a toolkit, which I had input with, that is now available on their website that they can fill in, take it with them. It's a really good resource to take with them to the GP to start that conversation, you know, because they should have the same, if possible, the same care as any other woman. Of course they should.

11:40Of course they should. They really should. But I do think, all right, people are scared and it's easier to say no sometimes in medicine. Yes, yes. And the last thing we want to do is cause harm and we'd feel really bad if a seizure, you know, frequency increase from a treatment but actually a lot of people with epilepsy are very empowered and they're very knowledgeable aren't they and um you know they're really on board with trying a treatment that might really make a difference and improve their quality of life because like the research is very there's very little research out there as you know but the research that is on the old oral synthetic made from pregnant maize urine how anybody thought of that i have to say have no idea and synthetic progestogens could potentially increase the risk of seizures but the body identical transdermal estrogen micronized progesterone is unlikely there's no evidence that says it won't but it's less likely because a one is transdermal and b the other one um is body identical so and i've got about four or five ladies i think that i see and they've been fabulous with it they really have yeah they have and it's very different because often a lot of them they've been told by neurologists or you can't have hrt because they're thinking about the synthetic hormones and um you know and i often think you know when people are stable or more stable their epilepsy it's often when their hormones are more stable and and you know we know that hormones work in the body in a very beneficial way especially in the brain so it makes sense to replace what's missing as well um and you know there's also some of the drugs can lead to have an increased incidence of osteoporosis and we know that menopause increases incidence of osteoporosis if you have a seizure when you're elderly and your bones are weak and you fall you're more likely to have a fracture as well aren't you yes yeah you are yeah and women are on the enzyme inducing ones are more likely to be affected with their vitamin d levels as well which increases the risk of osteoporosis or calcium vitamin d weight-bearing exercise as well is really really important and the nice guidelines actually say that all adults taking enzyme inducing epilepsy medication should have their vitamin d levels checked every two to five years for that reason because like say if they fall and they get a fracture like all these things are unavoidable are avoidable you know they are avoidable which is really important and that's where we need to be looking at everything when we look at our patients and try and we want to try and keep people as healthy as possible because we don't want to be draining the NHS and absolutely for as long as possible as healthy as possible and also thinking about younger people as well because you know we all see more and more women with PMS and PMDD and people whose brain responds more adversely to changing hormone levels, so because they get mood changes, for example, those women are more likely to get epilepsy.

14:39And sometimes it's not classic seizures. And I remember years ago, there was someone when I was working in New Zealand who used to come in, it felt like every time I was on call, she was in her early 20s. And she had these seizures, and everyone just thought she was making them up. And I sort of got into that trance thinking, or maybe she is making them up. But when she wasn't having a seizure, she was really lovely. And there was no psychological advantage for her to come into hospital to have this. And I've often really thought about her and wondered how much could have been related to her hormones.

15:13I think as well, I like to say one in three women have catamenial epilepsy, but women with epilepsy, and it's not cyclical, if they're getting all the symptoms of perimenopause, that causes so much anxiety that that could be the trigger factors, which again could cause seizures. And like you say, the progesterone can be really neurocalming. So that's probably an advantage in the overall picture for them as well. Yeah, it's very interesting. And the other thing is, one of my patients recently, I've known her for a few years now. She's fairly young and she has PMDD and she is on progesterone and she's done very, very well, the natural progesterone.

15:49And then she had a bit of an accident after having sex and took the morning after pill. So her mother reached out to me and was really worried because she'd had a seizure soon after having the morning after pill. And she actually videoed the seizure. And it was very harrowing, actually, to see because this poor girl was really struggling. And in casualty, they just said, oh, we'll come back if it carries on for more than four hours, which is a long time to have a seizure. And so because I knew the family, I still know the family, the mother could reach out. So she was using progesterone as a pessary.

16:32So I advised her to increase the dose of the progesterone to try and flood her receptors, really, of the natural progesterone in the body. So she was having to use the progesterone four or five times a day for a few days. while this synthetic, because it's a synthetic hormone that's used in emergency contraception. Yes, it is, isn't it? Yeah, yeah. And did it make a difference then? Yeah, absolutely. It really did. You know, it was quite hard, really, to persuade the mother and the daughter to increase the progesterone because it felt a bit paradoxical. But it worked quite quickly. But it was very interesting because I thought, gosh, if I had been on call and she had been my patient 10 years ago, So I wouldn't have known what to have done.

17:18I know. What we know now, like even I've been with you for over four years, what I know now compared to what I knew at the start is just unbelievable. Mostly because the support is there as well. We ask questions constantly, don't we? Yes, yes. But I think also we're thinking more, you know, about the brain because we know that the commonest symptoms in our patients affect our brain. So then you immediately think, well, how are hormones working in our brain? What do they do? And then when you think about... how the cells work. And when we think about epilepsy, we have these sort of action potentials for our nerves to work across our body.

17:54And if anything changes the action potential, you can get these sort of sparks really going in the brain. And absolutely. And if the brain activity goes in the wrong way, hence people can have a seizure and epilepsy. But too often, we've been so siloed in medicine we haven't been thinking about it no i think we're a lot more aware now aren't we you know and then the more i see ladies as well the more i see the benefit of it yes i really do you know and it's so lovely to see them leading a normal life you know it's very satisfying as well but it's such a worry for them isn't it when they become perimenopausal because everything just we know what it feels like to be perimenopausal without epilepsy yeah And, you know, for them, it's just like a double whammy.

18:40It's like, where do they go? Who do they go to? Yeah, absolutely. And that concerns me. It does. And I think also, you know, nurses are so good at looking after patients with chronic long-term diseases. A lot of nurses, like you say, are very well trained in epilepsy, but they're not always as well trained in hormones. So the more that we can educate healthcare professionals, especially about the difference between the natural and synthetic hormones, the better it's going to be for all our patients and long-term health as well. Yeah, and I think it'll give the med healthcare professionals more confidence as well in choosing treatment for them as well because it's much, much safer.

19:20So if anyone's listening and they might have epilepsy or know someone with epilepsy and thinking about hormones or it might be healthcare professionals listening, what are the three things that you have learnt about epilepsy and hormones that perhaps you didn't know 10 years ago? well the whole yeah basically the HRT is very very safe because I've seen patients myself that have come to see me

19:47like I say the research is very limited but there is some out there which can be we need to do more research oh there needs to be a massive amount of research full stop but epilepsy and HRT there needs to be so much more research you know with the body identical and educating as many people as I can yeah it's really important yeah excellent now it's been so useful Sean and we will share more resources as we're developing them as well to help empower people but I'm very grateful for your work and I'm also very grateful for you sharing your time to do this podcast today my pleasure thank you so much