Transcript Available Rebecca: How do you get on with life and still live well with a brain aneurysm or recovering from treatment? It's something a surprising number of people have to face and a topic we're exploring in today's episode. Welcome to Brain Aneurysms & Beyond with me Rebecca Middleton a brain aneurysm patient and the founder of Hereditary Brain Aneurysm Support. We're a UK charity supporting people with brain aneurysms, and their families. In each episode, we'll be discussing exciting research, remarkable stories and looking at the practical and clinical information surrounding our condition. To discuss how to live well with an unruptured aneurysm, I'm joined by... Fiona: Hi I'm Fiona Moss. I'm the director of the The Natalie Kate Moss Trust and we are a charity which focuses on the prevention and treatment of brain haemorrhages. Cat: So, I'm Cat Lamb, I'm a neurovascular nurse specialist. I work at the John Radcliffe Hospital in Oxford and I was involved because of some work I was doing with Rebecca and her team to highlight, unruptured brain aneurysms and the familial link. Rebecca: I started by asking Fiona to share more about her sister Natalie's story. Fiona: The charity is obviously called The Natalie Kate Moss Trust, named after Natalie, my sister, who unfortunately, back in 2011, had a brain haemorrhage at the age of 26. So before that she was absolutely fine, she was healthy, she was normal, she was like any 20 year old. And, unfortunately one day experienced a thunderclap headache, which is obviously a very common symptom of a brain haemorrhage, was rushed to hospital and after five days in intensive care, sadly passed away. And I think, obviously brain haemorrhages are very, very devastating. And obviously when they happen they really shake up communities, but particularly when they happen to somebody who's seemingly in the prime of their life and starting out she’d just moved to London and was just kind of really establishing herself and, it really shook up a lot of people, obviously our, family, our friends but the wider community as well everyone she went to school with, went to university with, and it really touched a lot of people's lives. And I remember my mum vividly saying to me at one point we need to make sure that this isn't in vain and something good comes out of this because obviously it really tore our family apart in many ways individually, and probably collectively as well changes the structure of us as a family unit. And so we set up The Natalie Kate Moss Trust and we reached out to the University of Manchester initially because she was an alumna of the university and initially it wasn't really meant to be a huge charity or anything that was as big as it is now so to speak. And we reached out to university and just said is there anything that we can support? Is there any way that we can channel our energies and create some good out of obviously a very dark situation. And having a conversation with the research team at that point there wasn't really any research being done into treatment after a hemorrhagic stroke, obviously a brain haemorrhage being a subtype of stroke. And so we donated a really humble amount of money at the beginning which is around £12,000 which in research terms is a very small amount of money. But what that meant was that they could formulate a research project, use that initial research project to leverage funds from other sources. And we continue to fund them over what has been now the last 13 years. They've obviously been able to use the funding that we've given them leverage funds from other areas each year and subsequently they've grown their team from initially there was only one PhD student working on that project to now 30 plus researchers. And they've developed a centre of excellence for brain research which is called the Geoffrey Jefferson Brain Research Centre centred in Manchester as well. Rebecca: And now in her memory you have established the charity and working really hard to drive home the message about how important it is to manage your blood pressure and you're going into the community. Tell us more about those campaigns and the impact you're making. Fiona: I think the piece around blood pressure to me when it first came up in a conversation with the university and we were like that is something that people can be doing to help prevent brain haemorrhages. It seems like an absolute no-brainer. It seemed confusing to me that this is not a more common message that's pushed - it is pushed but to older people to people who seemingly are the ones at risk of having high blood pressure. But the truth is actually a third of the population has high blood pressure and 50% of those people are undiagnosed. And they're undiagnosed because high blood pressure shows no symptoms. But also you can have high blood pressure even if you're not overweight, not super stressed, not eating terrible food, not drinking all the time. Even though lifestyle factors are a major contributor to high blood pressure you can still have high blood pressure even if you are seemingly perfectly fit and well and healthy. And I think the problem is as well that we're not educated on this topic enough. We all know roughly we get our blood pressure check when we go to the GP, but do we really know what that means? Do we know what the numbers mean? Do we know what the risks are if you have high blood pressure? And that's what we're trying to do is spread that message and spread that education to make more people understand the importance of checking their blood pressure and if it is high, what they can do about it. Because as I said before, it is very modifiable. You can either, hopefully manage it through lifestyle, but also there's a lot of very good medications out there now which can help to manage your blood pressure, which have very few side effects. But we're also wanting to speak to younger generations as well, because the age group between 16 and 35 have the highest percentage of undiagnosed cases proportionally to the number of cases. Because we're not talking to younger generations. It's never seen as a young person's thing, it's always seen as an old person's problem. But the more people we can talk to earlier, the more habits that they can create as they move through life. And they're already managing their blood pressure so that they're not catching it too late. Because high blood pressure over time can cause damage to blood vessels and weaken them over time as well. So we are going into schools and we are creating a programme to go into the PSHE curriculum to talk to children about it at an earlier age. And I think this is particularly important as well because, twice as many children now have high blood pressure than they did at the turn of the millennium, and that's largely due to childhood obesity as well. So it's really important that we start pulling everything together. The importance of lifestyle, but also the effect that that's having then on children's blood pressure as well. Thank you, Fiona. And as you said, blood pressure often presents no symptoms and indeed, brain aneurysms also present no symptoms and are more common than we think with an estimated 1 in 30 of people having one. And the vast majority of them don't know but often people do know whether that diagnosis has come about because of a strong family history or an incidental finding, or indeed they are recovering post-rupture as well. So there are many paths and many journeys. Rebecca: Cat, if I could come to you next and thank you for being patient, I wanted to ask you about blood pressure and I wanted to ask you about the types of questions that you get in clinic about blood pressure. Because it is so critically important for those people with brain aneurysms, either post-rupture or unruptured, how do you help manage blood pressure in clinic? Cat: So, if we're talking about unruptured aneurysms, so if they come in and they've got a family history, then I run that clinic, for patients. So they'll get referred in from either their GP or from other clinicians at different hospitals. And they really want to know at that point, what are my risks of having an aneurysm because of my family history. Sometimes they want to know what can I do to prevent having an aneurysm. So that would link in with things like blood pressure, other modifiable things like not smoking, not having recreational drugs, just having a general healthy sort of diet. Sometimes they also want to know they're not just their risks, but their children's risks. So if they are coming, then what about my two daughters? Do I need to think about them? So we talk about that a lot, and the time frame. So the anxiety levels, I think, are certainly higher if, say, somebody is in their 30s and they've had a ruptured aneurysm and they've been referred in and they're in their 30s they'll start sort of linking it together and they'll want to sort of have some answers as in, my risks of having an aneurysm at the same sort of time frame as their family member. If they have ruptured and they come because I run different clinics, so if they've had something we called a subarachnoid haemorrhage which is that rare type of stroke then we'll talk about ongoing risk factors. So things like blood pressure management, smoking cessation, just generally modifying and ensuring you've got a healthy lifestyle, but also talking to them about their risks being quite small as well of things happening and just to kind of try and keep things less anxious for them at that particular time. And generally at the end of the clinic for the unruptured or the family history ones, so we don't know if they have an aneurysm, we'll talk about screening, we'll talk about the pros and cons of screening, but usually at the end of that conversation their anxiety levels have definitely come down. Although I don't have any patient reported outcome measures at the moment, it's something I've certainly looked towards getting to see whether having those discussions do help with you making those healthier choices. Rebecca: Thank you, Cat. That's really important and that's really important to say that people with different experiences of their aneurysm will be in different places in their journey and will have different sort of questions and questions when they come to you and they come to clinic. And from our recent patient survey we also learned from patient experience and they told us that it was sometimes a struggle to find the answers to those everyday questions, to find that reliable information and advice as well. And that's why at, HBA Support, we've put together a new lifestyle guide to help people with those everyday questions. What are the type everyday questions you get whether that's driving or can I still drink or what about smoking? What are those kind of questions that you get in clinic and the advice that you give? So if they are unruptured, as in we found that they have an aneurysm, so that's after the clinic I first hold. So the first clinic is obviously with myself and we talk about the risks of scanning and their risks of having an aneurysm. Then we do a scan we find out they have an aneurysm. Then that will prompt another clinic appointment and that will be with a neurosurgeon and myself or an interventional neuroradiologist, and myself. And we then talk about, what is the size of what we found firstly and what is it that we found and what is an aneurysm? And talk through that in particular. And then it would be really the risks of bleeding throughout their lifetime or five year risk. And that will then kind of feed into any treatment options on the back of that, yes we're talking about healthy lifestyle. So definitely blood pressure, making sure that that's kept a check on, staying active safely as long as people can exercise, taking care of their blood vessels themselves. So by eating healthily, making some sort of changes to diet, managing stress, sleeping well and avoiding those risky things like smoking, excess alcohol, recreational drugs, things like that. And they're really open and honest conversations that we have when we're in clinic. And I think they're important to have so if they're being referred in, I think it's really important that they talk to their own family members as well and talk about their own risks as a family, to then maybe trigger that appointment happening in the first place, them getting referred to someone like myself or to a neurosurgeon to have a talk about their risks of having a cerebral aneurysm in the first place. I've met many patients who have got all the risk factors in the world. They've got all the family risk factors, and they're like, no, I don't want to know. Thanks very much. I just want to live my life. And that's fine. It's all a personal choice, isn't it? As long as they're informed and people are aware. But it's like Fiona said, it's younger people getting to them, getting to them early to make sure that any lifestyle factors can be sort of changed. Talking about it, you talk to many people and they're like, I have no clue about this type of bleed as well. Until it happens to them. And then suddenly people come out the woodwork of like, oh, yes, it happened to this person. So it's happening, but no one talks about it. Rebecca: No, absolutely, absolutely. It often goes unreported in families, as it did in my family as well. And I suppose after my diagnosis, I was keen to learn how I could be proactive, as you say many younger people are getting a diagnosis now, whether that's family history or indeed an incidental findings. And I think it's important that we arm people with the information that they can take proactive steps, that they can guard their health by eating healthily, by staying active, by managing their blood pressure as well. But also, when I was diagnosed, I had questions about driving and flying and, you know, you go back and you you make sure that you you feel okay about your diagnosis and let all of that information sink in, and then you go, okay, but I have to carry on with my life now, so what does that mean for my everyday life? Do you often get patients coming back to you with supplementary questions saying, well, what about this, Cat? And can I go on a roller coaster or can I go flying? Can I go scuba diving? Do you get those kind of questions? I suppose for me as well again, as a patient, is it okay to do that? Because we know you guys are really busy. Is it okay to send you an email, give you a call and say, you know, what about this? I'm thinking of doing this. Is this safe? Cat: So generally, if somebody has had an aneurysm treated and they'll be linked in with us then, so they will always have our contact details and they can, you know, dip in and out and get information from us. But if patients are, met by us in the hospitals, then we will always give them information about driving. So when to notify the DVLA, when not, because you don't need to all of the time. It's about driving on clinical recovery. If they've had a bleed, also, it's very, very individual. Going on roller coasters is definitely one I've had quite a few times. And as long as they're not on dual antiplatelets, which are drugs which thin your blood then we say it's fine. And contact sports is a no no if they're on things that thin their blood, they're the only things really we would say no to. Other than that, you know, driving is fine. Getting on an aeroplane is absolutely fine. We just suggest that they have travel insurance. We're getting lots of questions at the moment with patients who have been treated, who are, asking, about the weight loss jabs, and wanting to know if they can have those, if they're safe. And we're like, we don't really have much evidence, but, you know, it's about a risk/benefit discussion with whoever your prescriber is. Rebecca: Fiona, when you go talking to people on the street, when you go into workplaces, what kind of advice do you give in terms of how to manage, how to take those active steps to lower your blood pressure? Fiona: I have a slide that I always pre-empt when it comes up to say to people, I know you're adults and I know you understand this, but, you know, at the end of the day, sometimes it's the really basic things, sometimes we want the complicated answer, don't we? But actually, the things we need to do are look after ourselves, manage our weight, eat normal, healthy food, not overly processed, not full of salt, not full of sugars or artificial preservatives, you know, doing some exercise, not drinking too much alcohol, not smoking, managing stress, sleeping. It's kind of the things that we hear all the time. But I think in our modern society, it's very, very easy to kind of not, not kind of tick those things off in the way that we should do. You know, it's very easy to be stressed. And whether that's massive stresses or micro stresses, as I talk to people about, and that could be, you know, being late for work and getting a bit stressed or emails coming through or something coming up on the news. And every single time it's adrenaline and cortisol coming into your body. You know, it's very easy to get swept up into going to drinks and having a party here and a party there, and our lives are very busy and then we don't sleep and then we eat, you know, not great food, and we just kind of pass it off, don't we that we just go, oh, it's fine, I'll figure it out next week. And actually, sometimes we just need to slow down. We just need to get good sleep. You know, when we get good sleep, actually, I think that's the bedrock and the foundation for the rest of it, because once you sleep well, you feel good, so you're probably going to eat better, you're probably going to do the exercise, you might not be as stressed, because you're not stressed you might not have a drink etc. So, it's just about tweaking some of those things. And sometimes it is just a tweak. It's not always that we have to suddenly become a monk. And one of our trustees is an expert in hypertension and he will say this over and over again. It's not about shutting the door and sleeping 10 hours a night and meditating for most of the day and only eating seeds and fruit. It's about, moderation. And I think it also is about just starting with, when we're talking about blood pressure in particular, taking your measurement and going, you know what is my situation now? And do I need to make any adjustments in order to better manage my blood pressure? Rebecca: Yeah, absolutely. And very much a message echoed in our guide that those simple changes done consistently really can make a difference to your health and also make a difference to somebody who is living with the worry of an aneurysm, that they can take proactive steps and they can actually manage their health, as well. Thank you for sharing all of that. That's been really fascinating. Cat, to come over back to you. I mean, obviously we've been talking about people with unruptured aneurysms, but what about people with ruptured aneurysms? They too can take proactive steps in terms of keeping that blood pressure low and managing their health there. They must have different questions as well. What's your kind of top advice, to that community of patients? Cat: So in the follow up clinic that we have with our patients who have ruptured, a lot of the time, obviously when they're in the hospital, we're talking to them about any changes that they can make, their risks of this event happening again and those things. And what I'm finding a lot is that I’ll do clinic with somebody, they'll forget of the horrific time that they had in hospital, how unwell they were and how close to death that they were. It's a very, very serious condition that happens and they've reverted back to smoking or they've reverted back to other unhealthy sort of lifestyles. And it's really difficult because like Fiona said that adults and you know, you can't lecture people about it, you can just give them information. But inside I'm like, oh, I'm so frustrated. And it's so disappointing because you think how unwell you were and how you've recovered and you've recovered really well, but then you've just slipped back into those old habits which it's easy to do, I know. And then the next question they will say is, but I'm really worried about this happening again. And that then opens the door for a great conversation then of you know what you can do then, don't you to help prevent this happening again. Let's talk about your smoking or let's talk about you not taking your blood pressure medication or you know, they were asked to get their blood pressure checked with their GP maybe when they left the hospital and they haven't done it yet, or you know, maybe they couldn't get an appointment. But it's those kinds of things they want to know, can they have a little bit of alcohol? It's, absolutely fine. In moderation, anything is fine. The only big no nos, I'd say is like smoking and leaving your blood pressure unmanaged. Certainly because it has risks to the aneurysm that has been treated. Not only that, but also the development of ones in the future. Rebecca: And do you think that also kind of fear around the blood pressure numbers also prevents some people from taking a regular reading? I know myself because I went through pregnancy with an unruptured aneurysm, and therefore blood pressure was very, very important to me. I know that I have white coat syndrome now. I know that every time I see that blood pressure monitor, my blood pressure is going up regardless, just because I'm so worried about what the numbers are going to say. Do you think there's a little bit of that as well? Have you come across that in clinic, Cat, that people are worried about their numbers? Cat: I think some of the time they don't understand the numbers and they just say, oh, well, my so and so said it was fine, so that's okay, you know. And, our advice is that if your blood pressure is stable, then why not use that as a six monthly or yearly check. Use that time as a, right, I'm going to put this on the calendar and I'm going to get it checked, you know, this time or every time you're in the chemist or something, you know, if you're passing by one of those stands which says free blood pressure check, just get it checked and you can see what it's like then at different times, because you're right, people do have that white coat syndrome and their blood pressure will go sky high regardless of all the calming measures you can say of, okay, but I think education about it is really important. Educating what's normal for you, what's normal for someone else, knowing that blood pressure will fluctuate, it doesn't say the same reading the whole time. So that's important. People know that it will fluctuate, it will change. Rebecca: And Fiona, you have a really useful monthly reminder email that you send to people on your mailing list, which I get regularly. And it does go, oh, yes, I must. I must check my numbers. That is really, really, really valuable. Can you just share more about that in case people want to sign up? Fiona: Yeah, absolutely. I mean, I think one of the biggest things is, like, as we've already mentioned, is, that because it has no symptoms it's a very easy thing to forget to do. And unless, like Cat says you're walking past and you see a sign that triggers that there's got to be something, like anything, there's got to be something that triggers a reminder. And so we say to people, you know, put it in your diary. You know, the amount of stuff that we all put in our diary and that could be I had to go to the mechanic this morning that was in my diary. You know, you pick up the dry cleaning and whatever. And this is so important, it’s potentially life-saving. And so we encourage people to, in whatever way that they can remember to check their blood pressure. And we do say it doesn't have to be done every month and I'm sure Cat would attest to that but I think a month is just a really round number and it's a really easy way for us to remember to do it. And so we, we often, and a lot of us will do stuff periodically and that's quite often every month. And as women, you know, we're encouraged to check our breasts every month. So why not, you know, stack on top of that, checking your blood pressure as well and do a little monthly check. And with the blood pressure it takes 40 seconds to test. So it is really something that you can very easily do every month if you've got a monitor at home as well. That also makes it so, so simple to do. But actually what we've recognised is a lot of people don't remember to do it, don't put it in their diary, etc, so having a simple monthly reminder service, we've recognised that, that, you know, we've had a lot of good feedback similar to that of what you've just said, Rebecca. People just, just that very simple thing of going oh, yeah, I need to do that. Rebecca: Thank you, Fiona, and thank you, Cat. And just another shout out for our lifestyle guide which you can find on our website, hbasupport.org, which has lots more information and practical information and practical advice about how to live well with an unruptured aneurysm and take active steps to manage your health. And I'd like to say a big thank you to Professor Diederik Bulters who helped put that together for us. So a special thank you to Diederik. And before we go, I'd like to come to you both, on one takeaway that you would like our listeners to really remember about today's chat, which has been so valuable and so useful. Fiona, I should imagine it's going to be about blood pressure for you. Fiona: I would just say really kind of start getting into habit of checking your blood pressure and measure it and track it as well. You know, we spoke about how your blood pressure can vary in different situations. And you can have white coat syndrome in different situations. You could also just be, your blood pressure could be up for whatever reason you might be running around. You might be particularly stressed that day and just keep on top of what it is. The more you test it, the more you can get a bit of an average too. We always say, particularly for those people with iPhones and I'm probably sure on other phones as well, when you go on your health apps, there's all these ways that you can measure it now and log it too. So, yeah, just log it, be on top of it. And if you are ever worried about it, my recommendation to anyone I speak to is don't put your head in the sand. Like you're saying, Rebecca, someone says, oh, somebody else said, that's fine. Don't, don't kind of like try and justify if it is high. Just go and speak to somebody. There is never a silly question, I think, around blood pressure. Get it seen to. Rebecca: Thank you, Fiona. And over to you, Cat. For somebody with an unruptured brain aneurysm what’s that one piece of lifestyle advice or steps they can take to stay healthy and live well, live positively and live well. Cat: Well, I mean, the title of this podcast is really apt, isn't it? It's about facts and not fear. So just having all the facts in front of you about how you can change those risk factors that you have and ensuring that you are sort of moving from a, state of fear when you're first referred to being more in control, I think, of what can happen, you know, what the next steps will be if you can modify things. So, yeah, just also start small. If you do smoke and you know that you need to give up smoking, then we sometimes will or one of our lovely consultants, he will always say, take a cigarette out of the packet each week, you know, and just take one out each week and eventually you'll be reducing without even knowing it, rather than you just got to stop now. It's about what works for that person. Rebecca: Many thanks to Fiona Moss and Cat Lamb for sharing their knowledge and their experiences. And many thanks to our producer Rob Birnie too. For more resources and updates, do follow us on Facebook, Instagram and, LinkedIn. And if you found today's episode helpful, please take a moment to follow, subscribe and share it with somebody who might benefit. Every listen helps us make a bigger impact and reach more people. And finally, for our lifestyle guide, take a look at our website, hbasupport.org. Thank you for joining us, and until next time.