A National Migraine Centre Heads Up Podcast transcript
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[00:00:00] Did you know that many people with migraine also have other conditions like hypermobility, allergies to medications, irritable bowel syndrome and food intolerances. Hopefully, future research will help us understand why these things are linked. Welcome to the Heads Up podcast, brought to you by the National Migraine Centre, the only UK charity treating migraine and headache.
Dr. Katy Munro [00:00:28] Welcome to this episode of Head’s Up Podcast. And today’s episode is all about mast cell activation syndrome, which some of you may have heard of, but probably a larger number of you won’t know very much about. And I’m very delighted today to welcome Dr. Bethan Myers, who is a consultant haematologist at University Hospitals of Leicester. Welcome, Bethan. Thank you so much for joining me today. So can you just say a couple of words about yourself and how you got interested in this topic?
Dr. Bethan Myers [00:01:01] Yes. So as a registrar many years ago, I had a patient with a rare diagnosis of mastocytosis, so it’s a haematological condition that is very rare. And although I’m mainly a consultant in haemostasis and thrombosis, I’ve retained that interest in mastocytosis over the years. And then more recently expanded back into other mast cell disorders as these became more recognised over time. And so I now see patients not only with mastocytosis, but also with other mast cell disorders and there are a few of those.
Dr. Katy Munro [00:01:52] Yeah, so I first became aware of mast cell activation syndrome when a patient of mine at the National Migraine Centre was suffering not only from really severe chronic migraines, but also had a plethora of other symptoms which she was really struggling with. And she went and saw somebody else and got a diagnosis. And it actually really transformed her life and made me realise that we were probably seeing a lot of patients with this kind of condition. So looking into it, I’ve realised that it’s only relatively recently that we’ve kind of described it as a thing, mast cell activation syndrome, I think it was around 2008?
Dr. Bethan Myers [00:02:33] Yes, around that time. And you start to see publications mentioning mast cell activation as a syndrome or syndromes from about 2010, but largely ignored by the majority of the medical world for quite some time.
Dr. Katy Munro [00:02:56] So what exactly is mast cell activation syndrome? Is there- I know that there’s been some people, a working party trying to kind of define it and put some measurements on it. How would you summarise it, our state of understanding of it now?
Dr. Bethan Myers [00:03:15] Okay. Yes. So there’s more than one definition. There are several groups that define it slightly differently. And if you think about what mast cells are to start off with, they are multi-functional innate immune cells that- they really line the entrances and exits, if you like. So they line the gut and the respiratory system, the genitourinary system. They’re derived from bone marrow cell progenitors of, sort of, stem cells, as it were, but they live in the tissues and also the skin and they are in the brain as well. So they’re basically everywhere and they’re full of granules. So many, many different granules. And I suppose the most familiar one is histamine that they contain. But hundreds of others. Each one is not identical and then they have triggers which sets them off. So that’s the activation component of the definition. So those people that are prone to have over-reactive mast cells, if you like, primed to respond inappropriately. There are lots of different triggers, like differences in temperature, emotional stress, many, many different- you know, insect bites, all sorts of things really. Different people also have food intolerances. So there’s a vast spectrum of symptoms and many patients will have lots of different symptoms as well as you can imagine from the ubiquity of these cells.
Dr. Katy Munro [00:05:13] So talking about histamine, a little bit, in the skin. I’m aware that sometimes I’ll get mosquito bites and I’ll have a very big reaction and talking to patients, with a little bit more knowledge now about mast cells, there’s also sometimes urticarial rashes that come and go, aren’t there? And it’s a bit like the feeling when you get stung by a nettle and that is kind of a histamine release? When you get a nettle sting, is that right?
Dr. Bethan Myers [00:05:43] Yes. Yes, that’s right. And not all patients with mast cell activation syndrome have urticarial reactions, but it is a very common phenomenon and sometimes without any obvious reason for it. And some have more severe allergies like anaphylaxis. But again, it’s a subgroup, if you like. So some don’t have any allergic components at all and others, the allergic component is the major part of their condition.
Dr. Katy Munro [00:06:18] Do you think that makes it much more tricky for us as doctors to kind of identify people because there’s such a wide range of effects and it’s revealed in very many different ways, isn’t it?
Dr. Bethan Myers [00:06:30] Yes, absolutely. It’s a very much more complex situation than we’re used to dealing with. So we’re normally used to a particular symptom with a specific and individual treatment. But with these, the symptoms are very widespread and the treatments are also different for each person.
Dr. Katy Munro [00:06:57] Yeah, it’s quite a daunting thing I think. Once you have a diagnosis of mast cell activation syndrome or some kind of idea that you might have it, it’s to know where to look for help as well, isn’t it really?
Dr. Bethan Myers [00:07:11] Yes. And I think just thinking about the diagnosis, we have to be careful because there could be other underlying conditions that mimic mast cell activation. So it’s important to exclude those. But apart from that, other things that we look for are a range of symptoms in different body systems, which makes sense when you know that the mast cells are pretty well everywhere. I do look for any biochemical changes and we can talk a bit more about that in due course. And then responses to either mast cells stabilisers and/or mast cell mediator blockers like antihistamines.
Dr. Katy Munro [00:08:04] Okay. So just to stay with the symptoms a bit. When I’m- so I’ve got a little list now that I ask people about and skin reactions are one, drug allergies, food intolerances. But I also have some patients who have really quite profound irritable bowel syndrome, and they kind of rush off to the loo very suddenly for no apparent reason sometimes, or maybe get wheeziness or chronic rhinitis. And then we have- of course, we see a lot of patients who have chronic headaches and are often diagnosed with chronic migraine. So it’s really multi-system, isn’t it?
Dr. Bethan Myers [00:08:46] It is.
Dr. Katy Munro [00:08:46] And the little test that I’ve been aware that you can do to see if you’ve got a rather sensitive mast cell is to draw a line on the forearm with your fingernail and see if you have this thing called dermatographia and I always do it at the same time as the patient’s doing it. Just to check. I haven’t got a red line there now, but often they say to me, ‘Oh, I’ve got a red line’. What sort of signs and symptoms should we be trying to ask about? Is there a checklist or is it just an endless checklist?
Dr. Bethan Myers [00:09:19] Well, I send out a questionnaire with a checklist, if you like, before patients come to clinic, which helps enormously otherwise we’re there for hours and hours and hours going through those symptoms. So systemic symptoms like fatigue and general malaise is very, very common, or it’s sort of fibromyalgia and other aches and pains and boney pains. Neurological symptoms like, you know, mental health issues, anxiety, depression can be part of it. And migraines definitely can be part of it in some people because we know that there are histamine receptors in the brain, H4 receptors. Respiratory symptoms. You mentioned rhinitis. Some have asthma-like symptoms. And then you mentioned IBS and digestive symptoms are very common, which could be alternating constipation and diarrhoea, abdominal cramps and bloating. Some have nausea and vomiting. And then you’ve mentioned the skin as well, and flushing of the skin, sometimes without any other symptoms. But this urticaria, that is quite common and sometimes swelling of the lips and tingling of the lips as well, which we call angioedema. Some people have what we call oral allergy syndrome, too. And then there’s cardiovascular symptoms too, you know, low blood pressure, fainting or near-fainting, rapid heart rate, light-headedness, that sort of thing. And so, you know, there are multiple, multiple symptoms. And it’s very useful, therefore, to have a list sent out that they can tick and grade what the level of that- experience of that symptom is.
Dr. Katy Munro [00:11:30] I’ve had an interest for many years in fibromyalgia and chronic pain and I’m interested to hear you saying that because I think people with fibromyalgia are often really kind of debilitated by the fatigue as well as the pain, and the, kind of, search for some answers is very common in people with any kind of chronic illness like that and the fatigue. And brain fog I guess is also part of it, isn’t it?
Dr. Bethan Myers [00:11:59] Absolutely. Yes. And I think really basically what these substances that the mast cells are releasing are doing is causing an inflammatory reaction, which is, you know, can be widespread and they can release substances like prostaglandins that can cause pain and inflammation. But lots of other substances they release can do the same. And we see it in other conditions that we look after as haematologists. For instance, our patients with antiphospholipid syndrome who nearly always have migraine as well. All these sort of symptoms like fibromyalgia, chronic fatigue are very debilitating and often we can pick up the biochemical abnormalities that we see in a mast cell activation syndrome. So I think it’s a wider thing. So it could be secondary to another condition as well that it’s causing the muscles to release their substances.
Dr. Katy Munro [00:13:13] That was my next question really, is mast cell fragility- hypersensitivity, if you like, is that something that happens to you during life or is it something you’re born with or does it come and go? What happens?
Dr. Bethan Myers [00:13:30] This is a good question. So it can be a primary disorder and a mother may notice that her baby is very fretful and vomiting, frequently have skin rashes and that sort of thing. And that seems to be a primary mast cell problem, but often it’s secondary to some sort of interaction with the environment that’s triggered off the process, which then carries on and could be accelerated at various points by other triggers or life events like a Death in the Family or, you know, some sort of significant event. And yes, so there’s primary, secondary, and then there’s what we call idiopathic or unknown, which may not present at first, but maybe at some point that person starts to get the symptoms. So there is still a lot to learn about it, really. The mastocytosis, that patients do have a clear cut, easy diagnosis because there is a genetic defect that we can pick up in the vast majority. And there are some labs that can demonstrate within mast cell activation patients, in some of them, they can demonstrate the genetic modulation of some of the genes that control mast cells but there’s not one specific one. But it does seem to be transgenerational as well. And so there must be epigenetic factors involved. So it starts to get very complex from that point of view, too.
Dr. Katy Munro [00:15:23] Yeah, we hear this in migraine, of course, all the time. You know, asking about family history and you’ll hear some people say, ‘well, I don’t know anybody in my family’ and then other people say, ‘well, my mother or my grandmother…’ and often a person will say, ‘well, I get it, but my sibling doesn’t get it’. And it is that interaction, not just the genes, isn’t it? It’s the environment, it’s the behaviour, it is what’s happening to us emotional things, physical things that make those genes become, kind of, more active, expressing themselves and giving those symptoms.
Dr. Bethan Myers [00:16:00] It’s always more complicated when something is multifactorial rather than due to a single underlying process. Yes, and with a number of families that we look after, it’s very interesting that you might see one member of the family that has mast cell activation, but another relative may have a fairly newly described genetic defect called hereditary alpha tryptasemia where there’s an increased production of serum tryptase, which is something that we measure quite often but they might also have activation symptoms. So we’ve seen that in many families and some different aspect of a mast cell disorder. So I think looking at the whole spectrum, they often respond to similar treatments and they may have similar underlying biochemical abnormalities. In the UK, unfortunately, we don’t have access to many of the tests that we would like to do to diagnose mast cell activation and that is another issue that makes life complicated.
Dr. Katy Munro [00:17:31] They have a few more tests in the States, I believe. Is that right?
Dr. Bethan Myers [00:17:35] They do. Yes.
Dr. Katy Munro [00:17:36] What sort of things would you like to be testing and what sort of things can you test? Or is there no point?
Dr. Bethan Myers [00:17:43] Well, the things that we can test are serum tryptase. This is often low, normal in patients with mast cell activation. So it’s not always particularly helpful and it is over 8. So the range that’s quoted is up to 14, but if it’s over 8, they nearly always have this genetic abnormality hereditary alpha tryptasemia and obviously if the level is over 20, they often have a diagnosis of mastocytosis and all of these have activation components to them. So they may have symptoms, not always though. So I always do check that, but as I say, nearly always normal. I take a 24-hour urine chill sample. They have to keep it chilled through the collection.
Dr. Katy Munro [00:18:42] Right. Interesting.
Dr. Bethan Myers [00:18:44] Chilled through transport to the lab and we have to send it off from our lab. And that really looks at N-methyl histamine, so the breakdown product of histamine. And also three different prostaglandins. And this latter test is the one that, nearly always, is the one that’s most likely to come up positive. And we’ve taken these samples in patients across the whole spectrum. So the mastocytosis patients often have all three prostaglandins positive in the urine sample and the histamine breakdown product as well, whereas the alpha tryptasemia group of patients may or may not have one or more. And then the muscle patients often have one or two of the prostaglandins positive but rarely the N-methyl histamine. So this- like a gradation, depending on how many mast cells there are because often with the mast cell activation patients, they’re not a huge number, they’re just behaving badly in small numbers, which makes it more difficult to, you know, if you look at bone marrow with mastocytosis patients, you see a lot of mast cells. Whereas it isn’t informative in the mast cell activation patient because the numbers are too small.
Dr. Katy Munro [00:20:13] So with the tests of blood and urine that you can do, does the positivity of the test correlate with the strength of the symptoms or not necessarily?
Dr. Bethan Myers [00:20:26] Not necessarily. So some of the mastocytosis patients and alpha tryptasemia patients or relatives of those that may have quite high levels of serum tryptase without any obvious problems. There must be some interaction and some other susceptibility in those patients where the actual level is not telling us the amount of activity, but mainly we’re testing in patients that do have symptoms, that we have started testing relatives of patients with the alpha tryptasemia and often they’ve got high levels of tryptase without any symptoms at all.
Dr. Katy Munro [00:21:15] But from what you were saying before then, it might be that at a future date, if some epigenetic factors came into play, that that might reveal symptoms in them at a later stage? Or is that a bit too much conjecture?
Dr. Bethan Myers [00:21:31] That’s possible, although often the relative is the parent and, for instance, there’s one elderly relative of a patient who has a lot of symptoms and the parent has double the amount of tryptase with no symptoms. So, yeah, it’s something that we have a lot to learn about basically, but there must be some sort of interaction. We know that about 6% of the population have a duplication on one of the tryptase genes, so they’ll be a lot of people without symptoms and it will be some sort of interaction in those that do have symptoms. But that group have symptoms that are very similar and respond in the same way to MCAS patients, Mast Cell Activation patients, and mastocytosis patients that have activation symptoms.
Dr. Katy Munro [00:22:33] So lots more we need to find out about this. But assuming that you have a patient then and you’ve made a confident diagnosis that they have got mast cells which are behaving in a way that’s giving these symptoms, then what can you do about it? What would your, kind of, first line of treatment? I know that, through studying a few things about mast cells, I know that there’s lots of different histamine receptors and I think there are four that I know of. Two that we’ve definitely got treatments to block those receptors and the other two maybe are a work in progress to find effective medications. But is it just about histamine and antihistamines?
Dr. Bethan Myers [00:23:14] No, but we often do start with antihistamines, and often a combination of H1 and H2 blockers work better than a single antihistamine. So a lot of the basic antihistamines are over the counter preparations, but you can’t presume that the same one would work for everybody. And that is a case of trial and error. So for a number of patients, just simply having antihistamines, combination of something like the Fexofenadine, for instance, which is a prescribed one, which- I like it because it’s non-sedating and it seems to work well in a lot of the patients, but many would just have others like Cetirizine or Loratadine over the counter. And then with the H2 blockers we always used to use ranitidine, which worked very well, but that’s withdrawn now. And so I tend to ask GPs to prescribe famotidine for the patients if they live a distance away. So, that would be a starting point. But I do often ask the patient what is- so there are layers of treatments, really, and layers of symptoms. I often ask them what is your most predominant symptom? And if that happens to be gut related. Then we might go for a mast cell stabiliser like sodium cromoglycate, which only really mainly works on the gut, there’s very little absorption and plus or minus the antihistamines depending on- because they are very safe, you know, as long as they are used in the correct amounts. But some patients do need higher amounts so that’s recognised as well.
Dr. Katy Munro [00:25:23] Yes. I’ve certainly heard of some patients taking much higher doses than you would see if you buy them over the counter at Boots or other pharmacies. And when you- so the famotidine, you were mentioning famotidine and I think it’s about the only H2 blocker that people can get hold of at the moment. So would you give the combination of an H1 and H2 for any sort of system symptoms or would you say, ‘right, you only have the famotidine if you’ve got gut symptoms’. Or is it useful for the skin symptoms or the respiratory symptoms and those kind of things as well? Is it just a generalised, helpful thing?
Dr. Bethan Myers [00:26:05] It’s interesting because we think of it as just working for gut symptoms, and that’s what the general license is for. But it does seem to complement the H1 blockers when you use them in combination. So it must be doing more than just that. But I can’t give you an explanation for why that is the case. And again, it is an individual thing.
Dr. Katy Munro [00:26:33] Yeah. How long would a patient have to be on an H1 and H2 combination to know whether they are going to get benefit? And also, if they’re not getting benefit, would you increase the dose, you know, quite rapidly? Or do you have to hang on in there? I know with a lot of migraine treatments, we say to patients, you need to get your maximum tolerated dose and stay on it for three months before you can tell if it’s helping reduce your brain irritability. Is it the same with these kind of things?
Dr. Bethan Myers [00:27:03] Well, yes, so quite similar in that, so I would always say start off with one or possibly the combination when it’s antihistamines and take it for at least a month. So if it’s not working at all, then stop it because they accumulate more and more medications. If it’s working to a certain extent, but not fully, then we might adjust the dose. But we always start gradually with the patients because they may be sensitive to, not necessarily the drug itself, but to the excipients o the filler in the tablet, for instance. And some patients are sensitive and they have to have a certain brand and sometimes chemists will just dispense a different brand and they’ll suddenly notice that they react in some way to a different brand. So we’re cautious about that. We would certainly not change for a month with any new or additional treatment until we know. So I would say not three months, but it’s usually a month for this group of patients. And then we would either add in increase the dose or add in another drug depending on what aspect of their symptoms we’re focusing on.
Dr. Katy Munro [00:28:30] So I’ve also come across people who have been given montelukast so that’s a mast cell stabiliser, isn’t it?
Dr. Bethan Myers [00:28:38] Yeah, yeah. So it’s an anti-leukotriene drug as well, so I don’t give that up front. And also because especially, some of the patients have mental health issues, we know that there’s a potential reaction that they can have. So I’m a bit cautious about that. But for some patients it’s very helpful as an additional drug.
Dr. Katy Munro [00:29:10] What about supplements? Are there things that you would advise patients that they could just go and buy and try themselves?
Dr. Bethan Myers [00:29:17] Yeah. So we know that vitamin D is important for stabilising mast cells. It’s important in lots of things.
Dr. Katy Munro [00:29:25] In everything.
Dr. Bethan Myers [00:29:25] And I think especially as the weather changes we’re nearly all probably deficient in vitamin D in the winter. Vitamin C, it’s not a mast cell stabiliser, but it does work in a slightly different way to help stabilise mast cells. So that’s another substance that you can just buy. Some patients- so there’s quite a few different plant based substances that are not, you know, we can’t prescribe but things like quercetin, that also can stabilise mast cells and luteolin. There’s a whole range of different natural substances, if you like, that patients can try and again, they have to try and get the purest form, with no fillers that they might react to. So that’s sometimes a difficult thing for them. But one of my patients has made a list, which she kindly sent me, of what she is finding to be the best brands, if you like, for these different substances and then we can send that out to different patients to try.
Dr. Katy Munro [00:30:57] Excellent. I know that patients who are, or people who are listening will be thinking what doses? What dose of vitamin D and what dose of vitamin C would you be talking about? Or does that vary on the individual?
Dr. Bethan Myers [00:31:10] It does vary, yes. And I do like to not necessarily start at high doses, but see what their vitamin D level is. So what we want to be doing is getting the level not just into the normal range, but well into the normal range and then re-checking when they’ve been on it for a few weeks. And either myself doing that or their local GP. And often these patients have found very helpful GPs. So that’s a really key aspect of their management because I might be asking them to prescribe substances, you know, drugs that they’re not familiar with. And I try and put explanations in the letter when I’m asking them to do that. And also quite often send them an article, if they’re interested as an educational thing for them.
Dr. Katy Munro [00:32:11] Yes, I think that that’s really important. And we have the same from the National Migraine Centre. You know, we really do rely on GPs to help the patients on their day to day ongoing journeys because we’re just seeing them intermittently. Going back to vitamin D, I find, and you’re probably aware of this as well, sometimes I’ll speak to patients and they say, ‘Oh yes, I was found to be low in vitamin D so I took some supplements for a couple of months and then I stopped them again’. And of course their vitamin D goes back down into their boots so I seem to be forever saying to people, ‘no, no, no, keep taking it, keep taking it all through the winter, especially through the winter’. So yeah, it’s just really important, isn’t it. So, any other medications or supplements or things that patients can do themselves or any practical things like diet or anything like that, that can be helpful? So I’ve heard about low histamine diets and looking at the list of things you’re not allowed to eat on a low histamine diet, is absolutely restrictive, isn’t it?
Dr. Bethan Myers [00:33:20] It is, and I do worry about that, but sometimes for a short spell going on to the low histamine diet can be helpful. And I mean, sometimes those patients don’t have mast cell activation syndrome, they have reduction or absence of a particular enzyme that breaks down histamine, histamine intolerance. And there’s quite a bit of overlap in the symptoms, as you can imagine with that. I suggest to patients that they avoid those substances with the highest histamine content to make sure that they- we know that the histamine content increases if food is kept for a length of time. So emphasise having fresh food. Some of my patients have started growing their own food and vegetables and things like that, which is great, but if someone is on a really low histamine diet, as you say, it’s very restrictive and they may be missing out on other minerals and things that they really need. And because these patients may have a restricted diet because of sensitivities to different foods anyway, you don’t want to exacerbate that. So yeah, but again, it does vary from patient to patient.
Dr. Katy Munro [00:34:45] What are the top three foods that contain a lot of histamine?
Dr. Bethan Myers [00:34:50] So strawberries and tomatoes, things like that. And some shellfish and eggs. Oily fish.
Dr. Katy Munro [00:35:04] Oh, oily fish? I’m always telling people to eat oily fish because it’s got such good omega three in it. But obviously, if an individual wants to try restricting certain things in their diet, I mean, I normally say to people, ‘if you’re going to do it, don’t think of it as a life sentence. Do it for a month or two and see how you feel at the end and then reintroduce things’.
Dr. Bethan Myers [00:35:25] Yes.
Dr. Katy Munro [00:35:26] But to do it properly for a couple of months, it’s no good in just cutting it down. You have to completely exclude whatever it is that you’re trying to see if you sensitive to it.
Dr. Bethan Myers [00:35:36] Yeah, I think, like you say, that is absolutely right. That you need to give it a good trial. But do one food at a time rather than more than one where you can’t tell which it is. But obviously there’s a number of foods that do have a lot of histamine in them. I know patients with migraines also react to chocolate and that does have quite a bit of histamine in it.
Dr. Katy Munro [00:36:06] Well, it’s interesting because there’s quite a lot of evidence now that craving chocolate is a prodromal symptom of an attack coming. So it’s a tricky one. There are some patients who definitely are sensitive to certain foods. But I think it’s much less of an issue than it was thought to be. So, yeah, it’s interesting. And the prodromal cravings, carbohydrate cravings, people often say, ‘Oh, I know I’m getting an attack because I want to eat all the doughnuts’. So, yes, I think diet and the gut is another fascinating area. Trying to keep a healthy gut and avoid the foods that trigger whatever symptoms you’re getting and try and make sure you’ve got a nutrient balance, it’s quite a challenge.
Dr. Bethan Myers [00:36:51] It is. And avoiding processed foods as well. They have so many not very good for us- not very good for our gut microbiome substances in them.
Dr. Katy Munro [00:37:04] Yes. It certainly seems to be a variety. I was listening to Professor Tim Spector talking on the radio the other day and saying about, you know, it seems to be really helpful to have at least 30 different plant-based foods per week. And of course that includes things like garlic or herbs, spices, as well as piles of broccoli and carrots, the more obvious plant based foods. So, yeah, lots still to learn but ingredients. I say to my kids as well, ‘cook with ingredients and you know what’s going into your food’ rather than just buying something that’s ultra processed because I think we do have far too much fat in our modern diet.
Dr. Bethan Myers [00:37:46] We do yes. Fermented foods are always recommended for our guts, but the patients with mast cell often can’t take them because fermented foods are high in histamine.
Dr. Katy Munro [00:37:57] Yeah, because, of course, they’re aged by nature of them. They’re having to hang around for a bit and ferment. Yeah. So with mast cell activation syndrome the same as with patients with migraine, I think what we’re both saying is you have to find the right recipe for yourself, for your lifestyle and the things that you’re doing. And it’s a very individual thing. There’s no one plan fits everybody.
Dr. Bethan Myers [00:38:23] No. That’s absolutely right. Yes, it does make the whole thing more complex. And it’s understandable that when patients go to the GP and they’re told, just mention one symptom, it’s a nightmare for these patients.
Dr. Katy Munro [00:38:41] Yeah. That was the other thing I was going to ask you about, you obviously have a special interest and, I’m sure, see a lot of patients. Once somebody is known to have a special interest, everybody heads for their clinic. Are there many people like you in the country? What I’ve come across is that because of these multi-system effects, patients will often end up going to a lot of different specialists and they might see a cardiologist, and a dermatologist and a rheumatologist and a neurologist. And we don’t seem to have people who are doing all of those things or looking at mast cell with an overview.
Dr. Bethan Myers [00:39:18] And it does need that more holistic view. So very few people really. I work alongside local allergists because I think they’ve got expertise and are able to access different treatments, some of which are very expensive and which I don’t have access to. But very few haematologists would be seeing this type of patient. Some allergists. I think views are beginning to change, but some allergists and immunologists are beginning to think about this and we’ve established a mast cell MDT regionally with allergists, immunologists and myself and SPR so registrars as well, so they’re learning about it too. There’s quite a few people that see patients privately, but not and I think it’s partly because it takes such a long time to go through things properly with the patients, but very few really in the NHS.
Dr. Katy Munro [00:40:33] Yeah.
Dr. Bethan Myers [00:40:34] There is a paediatric allergist, so I’ve got a colleague who I introduced to mast cell disorders and he now has set up a mast cell disorder clinic and I sometimes go along to that. And I gather that in the recent National Allergy meeting, there was a more positive vibe about it, whereas in the past there’s been a huge scepticism about this.
Dr. Katy Munro [00:41:03] Yes, I’m certainly aware that sometimes with any change in medical practice or with any kind of new condition or not new condition, but newly described condition, there’s a certain hesitation or resistance or ‘is this another thing I have to think about?’ And especially if it’s complicated and not clear cut, it can feel like it’s a bit of an uphill struggle for patients to get support and help. Can I ask you about just a couple of overlapping conditions? So we’re aware in our clinic that we also see a number of patients with hypermobility, with Ehlers-Danlos syndrome, which may or may not have been diagnosed and with postural orthostatic tachycardia syndrome, and a lot of them seem to have mast cell issues as well. So I think it’s sometimes called the trifecta, isn’t it? These three conditions. And we see a lot of them who also have migraine. So I’ve started saying to patients, ‘Do you consider yourself or have you ever considered yourself to be hyper mobile?’ And they kind of go, ‘Why are you asking me that?’ But it is surprising how many say yes.
Dr. Bethan Myers [00:42:14] Yes, absolutely. Because this is- we see the mast cell patients, predominantly female although we have got some men who have this. And in the women and girls at quite a high percentage they do have this trifecta, they do have- and a lot of them have been diagnosed with hypermobility and often when the family comes together, the mother says, ‘yes, I used to be able to do the split easily when I was younger’. So sometimes if somebody comes and they’re a bit older, you need to go back and ask them, because as we get older that hypermobility aspect has decreased a bit. But yes, I mean sometimes the postural orthostatic tachycardia syndrome is the predominant symptom and they come in a wheelchair or can’t even actually attend a clinic. And there are overlapping symptoms between these. Sometimes it’s difficult to tease out what is what. And with the hypermobility EDS patients often they have gut symptoms because of that rather than mast cells. Which is one of the reasons that we say if you try this for a month and it doesn’t work, then, you know, it’s probably is the EDS rather than the mast cell causing that. But yes, again, it’s something that’s really interesting to research and see whether it’s the mast cells releasing substances that cause these. You know, which way round is it?
Dr. Katy Munro [00:44:03] Yeah. Teasing out what the link is. Yes. Because I know it’s a genetic disorder, Ehlers-Danlos, and there’s underlying collagen issues and that can be linked with blood pressure dropping when you stand and all of those kind of things. But yes, it is a very fascinating area, I think. But as I often say with migraine as well, more research is needed. We seem to have this mantra that there’s just not enough research. We need to have better information about these overlapping things. The other condition, which of course is top of the news at the moment, is COVID and long COVID. And I’ve been fascinated to be reading some of the things coming through that the people are saying that long COVID seems to be giving them similar symptoms to patients with mast cell activation syndrome. So are there studies going on about that? Is that hopeful news that we’ll get more research?
Dr. Bethan Myers [00:45:04] There was research this year actually that showed a clear relationship between the symptoms that mast cell patients have and long COVID patients. They’re virtually identical. Showing chronic multisystem inflammatory symptoms plus or minus allergic type symptoms. So Dr Lenny Weinstock looked at 136 patients with long COVID, 136 healthy controls and 80 mast cell patients and really there was virtually no difference in those matched patients with the symptoms. And so, I mean, it’s not surprising because mast cells can be activated by viruses such as COVID, and then they react by releasing this substances and Lawrie Afrin, a really well known consultant in haematology who has written a book on mast cell activation, wonders whether these patient- yes, you’ve got the book.
Dr. Katy Munro [00:46:17] I have the book.
Dr. Bethan Myers [00:46:19] He’s wondered whether they actually had mast cell activation, perhaps undiagnosed before or perhaps mildly and then exacerbated by this. So he’s been going back over the past history in these patients. And then there’s another publication from a Dr. Davis who has compared another aspect which is sort of a relapsing and remission-type picture, which you sometimes see with mast cell activation. And it seems to be the case with long COVID patients as well. So there’s quite a lot in common and it sort of makes sense from the passive physiology of mast cells.
Dr. Katy Munro [00:47:05] That’s really interesting. And I was- so I did a guest recording with the TLC sessions, which is a long COVID podcast, which is run by two journalists who are suffering from long COVID. And they were certainly saying that they’d been advised to have some of the same medications that you were suggesting earlier in this recording. So really interesting. So anybody who has long COVID who’s listening to this episode, it’s definitely worth them looking into mast cell treatments and just seeing if there’s anything that they could try if they haven’t been offered it already. Just even simple things that we were mentioning earlier.
Dr. Bethan Myers [00:47:48] I know the two mast cell support groups in the UK have been inundated by patients with long COVID symptoms asking advice. So yeah, but the mast cell patients are also concerned because there’s now a shortage of various medications.
Dr. Katy Munro [00:48:09] Oh, yes. I think. I guess the plus will be if there is more research into why long COVID is happening and who it’s happening to, that might extrapolate more broadly and hopefully benefit everybody.
Dr. Bethan Myers [00:48:24] We’re definitely hoping that that will be the case and there will be a better recognition of mast cells and how they behave.
Dr. Katy Munro [00:48:31] Was there anything else that you would like to mention that I haven’t asked you about?
Dr. Bethan Myers [00:48:37] I think you’ve been quite comprehensive with those questions. I can’t think of anything else. I think, you know, there is hope for these patients and if they keep knocking on the right doors, they should find suitable treatments and it varies from person to person. But, you know, we’re getting there with improving things. And there’s also more research looking into this. And I think perhaps long COVID, although it’s a terrible thing to happen, is actually going to help from the research point of view and in the longer term, improve the situation for patients with mast cell disorders.
Dr. Katy Munro [00:49:22] That’s really good. And I think back to the first patient who made me aware about mast cell issues and getting the diagnosis and getting some help absolutely transformed her life. So it is a message of hope going forward, isn’t it? So that’s brilliant. So thank you so much, Bethan, this has been really fascinating. And I think people will be really interested in hearing this episode. So thank you so much.
Dr. Bethan Myers [00:49:49] You’re really very welcome. I’ve enjoyed it.
Dr. Katy Munro [00:49:53] I’m now very happy to chat to Anna, who was a patient who came to see me in the National Migraine Centre and was really very instrumental in raising my own awareness of Mast Cell Activation syndrome. So thank you very much, Anna, for joining us.
Anna [00:50:11] Thank you for having me.
Dr. Katy Munro [00:50:13] So we’re going to talk a little bit about your discovery of the fact that some of your symptoms, although you were getting migraine, but you were also getting issues that seem to be down to mast cells and and what happened next. So do you want to start off by just telling me how you first became ill?
Anna [00:50:33] Yeah, I guess it started really when I was very, very young. So I got told that- my mum got told that I had cow’s milk protein allergy as a young baby, and then through childhood, if I was ever given any antibiotics, I’d have allergic reactions to them but I was a pretty well young thing and didn’t really need to take antibiotics. But things progressed and I guess through life I was having strange reactions, not really allergic reactions, but strange reactions to all sorts of peculiar things. So it could be toothpaste, could be strange things with food. I couldn’t really ever put my finger on it. And then when I had my son, that’s when things really, really changed. So I believe it’s the change in chemicals and hormones within your body that really sort of sparked it off for me.
Dr. Katy Munro [00:51:26] So when you say strange reactions to things, not allergies? Were you getting rashes or were you feeling unwell when you ate certain foods or used certain toothpaste?
Anna [00:51:37] Yeah, I never particularly was one for rashes. It would be more migraines actually were probably my main symptom when I was younger. Also, stomach problems. With certain toothpastes I get these sort of red marks down my face after using toothpastes, or certain toothpastes, just strange things like that. So, never perfect rashes or anything that would fit an allergic type response, but peculiar reactions to things. But also never particularly enough to go and tell anyone about, never enough to go and report. Just a bit strange and just the way I was.
Dr. Katy Munro [00:52:18] So you just avoided things and thought, ‘Well, that’s a bit weird, but I’ll just get on with it And not have those foods or use that toothpaste.’
Anna [00:52:24] Absolutely. And then in my twenties, I suffered really awful migraines and never particularly put them down to a link with anything. I’d never notice triggers again. It was just, I presumed hormones at the time in my life. But yeah, after having my son, really, that’s when things drastically changed for me. And I was prescribed antibiotics again after having him, which made me desperately unwell. So, I mean, I’ve written down the list of some of the symptoms I had. I mean, absolutely bizarre. But, I literally felt as though I was being poisoned.
Dr. Katy Munro [00:53:07] So how old was he then?
Anna [00:53:09] It was from really from when he was newborn.
Dr. Katy Munro [00:53:12] Newborn. So tell us the list. What sort of symptoms did you get then?
Anna [00:53:17] Yeah, this is quite a list. So definitely feeling of feeling poisoned as though my body was really sort of shutting down and at worst as though I was fighting for my life. My face would go incredibly, incredibly pale with very, very black eyes and then constant 24/7 migraines. So felt, as though- I used to describe, like my brain was swelling, real brain fog, blurry vision, almost as though I was looking through water. I’d feel really agitated. And, I used to describe it as terror mode, and I could feel adrenaline just pouring through my veins and my mind was quiet. I was calm, but it was as though my body was literally in terror mode. And it was my behaviour, my body movements were of extreme agitation, totally out of character for me. Excessive drinking so I could drink six/seven litres of water in one go very, very easily. Again, that ties in with feeling poisoned and my muscles would be really tight, my jaw would lock, I’d struggle to function. So I was housebound for, you know, eight months at a time and bedbound for a fair few months. I’d have all sorts of upset stomach situations and bleeding in my stools. I’d get horrific insomnia. So at absolute worst- what I’m describing is when I was at my most extreme, but, you know, I couldn’t sleep for seven days, not even 10 minutes sleep in seven days. It was just as though my mind was quiet, but my brain and my body were completely switched on. I was twitching. I felt sort of spiking up my left arm. I used to quite often lose my voice. And I had sort of this acidic or burning feeling in my nose and my throat, which if I wasn’t removing whatever trigger was causing it- obviously at the time, I didn’t realise, then it would progress to a complete loss of voice and that could happen for days or weeks at a time. And I felt very unwell, so I was being cared for, pretty much 24/7 at worst. And when not at worst, I was struggling to get by.
Dr. Katy Munro [00:55:45] Really hard to look after your son.
Anna [00:55:48] Impossible, actually. Had it not been for family it would have been quite a different story. Very much so.
Dr. Katy Munro [00:55:57] So what happened next?
Anna [00:56:01] I bounced between an absolute myriad of specialists. This is the thing with MCAS you get bounced between people and I very much did and I just, I wrote a list down the other day when I was thinking about talking with you. I’ve seen multiple allergy specialists, psychologists, psychiatrists, counsellors, physios, haematologists, gastroenterologists, multiple GPs, three neurologists, holistic practitioners, acupuncture, audiology, cardiology, endocrinologist, ENT, and the list just goes on and on and on. And so that’s exactly- I was just bounced between these people with nobody knowing what was wrong with me. And more often than not, quite honestly, it was put down to anxiety or being a new parent. Post-natal depression. More often than not, it was mental health. That’s what they assumed it was. But I passionately- I had strong mental health and I actually very passionately would go in and say, ‘Look, I know it doesn’t have to be like this. I know that I can get through this. Please, please don’t give up on me’. And I think that’s possibly what I said to you when I first came to see you. Please don’t give up on me. And I’d say the same thing to every next specialist that I was sent to see or that I’d researched and gone to see because I just knew it wasn’t something that could be sorted by going to see a psychologist. But of course, I did go and see those mental health specialists because that’s what I was being told to do for a long, long, long time.
Dr. Katy Munro [00:57:44] So from the time that your son was born until the time that you actually started making progress and understanding that there was something going on called mast cell activation syndrome, how long did that take?
Anna [00:57:57] Oh. Five years.
Dr. Katy Munro [00:58:03] I was going to say, I think he was about four or five when we first met. And we met, of course, because of your migraine. And we were dealing with trying to help you with chronic migraine. But you were telling me about your symptoms and then I think when we met again, you had made some progress in getting a diagnosis. So do you wanna say a bit about how that happened?
Anna [00:58:27] Yeah. So I got an incredibly supportive GP who wasn’t entirely sure what was wrong with me, but very, very supportive. And I then went to see a lady called Amie Marshall at Body Fabulous, and she was actually the first person that suspected it could be histamine related. So she worked in with my GP and I came to see you and mentioned the craziness. But you know, MCAS isn’t known about. Histamine problems aren’t particularly acceptable and so it was very touch and go as to who would be prepared to move forward with this with me or not. And then I got sent and eventually to Dr. Croom up in Leicester at the time. And she was the one that really diagnosed and helped me move forward. But I have to say having a good GP behind you is so valuable.
Dr. Katy Munro [00:59:27] Because I think a lot of people with chronic invisible illnesses often come up against this sort of stigma of, well, we can’t see it, there’s not an easy test so it must be something that you’re making up in your head or you know. And that’s a real battle for for patients. You know, even with the maybe the more straightforward diagnoses of chronic migraine, I mean, you add in something just a little bit weird, a bit unusual and not many people have really heard about mast cell activation syndromes, because it’s only really been talked about in the last decade or maybe 10 to 15 years now. So that’s really lovely that you had a very supportive GP. And so what were the first steps you took on your recovery?
Anna [01:00:20] Yeah, So the main thing for me was avoiding triggers and medication. So it’s not always possible to avoid triggers and every one with MCAS has different bizarre triggers. One of which for me was lifting. So I went probably a period of about 18 months without even being able to lift my own handbag because that would set me off because again, any change in your posture, any change in what you’re physically doing can change the level of mediators within your system. And so lifting anything, exerting myself in any way would set me off. So medication that helped to stabilise the mast cells was really the thing that totally changed my life around. There’s certain things that you can’t avoid. So pollen is one of them and that was something I just couldn’t get away from. I was wearing a mask sort of 24/7 and you know, you couldn’t have any windows or anything like that open. But yeah, so once I was established on the mast cell stabilisers, but also antihistamines, life really started to change for me. And that’s one of the diagnosis that they, the point they make in diagnosis is response to medication. And my response was so overwhelmingly positive and enabled me to tolerate certain medications, so for example, I mean, you know, a couple of years on now, but I’m able to take antibiotics if I need to, and that’s okay. I’m not made ill from them. And life has completely changed around for me now. I’m completely so different.
Dr. Katy Munro [01:02:04] It sounded quite dramatic. And I remember seeing you again when you came back and you’d started on some of those antihistamines and saying, ‘oh, wow, life is getting better’. How long did it actually take from having that diagnosis and starting on some antihistamines and mast cell stabilisers for you to start to feel better? Was it kind of in the first week or did it take several months?
Anna [01:02:28] Yeah. So in terms of the antihistamines, I noticed a difference probably in about 20 minutes, but I needed to be on them regularly. So it wasn’t sort of a 1 a day fix, it was something that I needed to be having literally constantly throughout the day. When I started on Nalcrom, the mast cell stabiliser, that’s when I noticed an enormous difference. So I was very, very fortunate in that I- because it agreed with me so well, I could up my dose fairly fast in comparison to how other people sometimes respond to it. But it’s called a mast cell stabiliser and that’s exactly- it feels- I could feel it stabilising my symptoms. So with the antihistamines I could sense that I was either okay or I wasn’t, and they’d very much block out what was going on. But with the cell stabilisers, I could feel I became less reactive to things over time. I noticed a difference within the first few days of taking the stabilisers, however, in truth, it did take a good few months for me to really become established on them. And then I brought in another cell stabiliser as well. pzotifen. And that combined with Nalcrom really stabilised me and it’s a really bizarre thing. It feels, yeah, that you’re just far less reactive to things and whilst I might still react to some things, it’s such a gentle reaction in comparison and nothing is extreme. It really stabilised my system. That’s exactly it. So I’d say, but after maybe a year of being on everything and working out my dosages and taking antihistamines as well as the cell stabilisers, then you know, after a year I was really properly living.
Dr. Katy Munro [01:04:22] And that is a journey which is a very individual one, isn’t it, for patients with mast cell issues, because there’s no one regime fits all. It’s about finding what suits you. And I think that’s what I’ve heard from patients is it’s quite frustrating because it may be that they take one medication, but they react to something that makes that medication into a tablet. So the excipients that kind of make up the powder in the tablet may be something you react to rather than the actual active ingredient and so sort of trial and error and working through different combinations and different doses. The doses with mast cell are often very much higher doses of antihistamines than we would normally expect to take maybe for hay fever or something like that.
Anna [01:05:10] Very much. Very much and multiple times a day. But the difference if someone does suffer with MCAS, My gosh, the difference to life is amazing. Yeah, absolutely.
Dr. Katy Munro [01:05:25] Were there any other things, non-medication based that you found particularly helpful to make you feel better?
Anna [01:05:31] I can’t stress enough about avoiding triggers. Whilst it’s tempting to test and think, well, surely I can’t really be reacting to whatever it might be, actually you need- it’s almost like, think of your body as a bucket full of histamine and depending on what your level is, you actually need to bring your histamine level down. So for example, if you react to, I don’t know, dairy, for example, if you had lots of certain food on one day or exposed yourself to lots of MCAS triggers like, I don’t know, food that you’re funny with or certain medication that triggers you or certain smells from deodorant or washing powder, and then you had dairy, you’re far more likely to react more severely to the dairy than if you’d avoided all your other triggers in that day. And so avoiding triggers, definitely. Not exerting yourself. So for me, I can now exercise, I can go out running. This is something that I just didn’t actually ever believe I could ever do again after not lifting my handbag for 18 months. But yeah, so avoiding exertion. Keeping a diary. Oh my gosh. The importance of keeping a diary, but not just a food diary. But timings. Noticing the time of your reactions and actually what you’ve been doing, where you’ve been, who you’ve been with, whether you’ve been exercising, whether you’ve been outside. Could it be people’s perfume? Could it be pollen related? Could it be food related? You know, all these different things. Keeping a medication diary as well. And every time you. Bring in, whether it be a new food or, you know, a new medication documenting it so that you can look back and work your way through just to try and help to identify your triggers. So important. But I have to stress as well, keeping good mental health, because if you suspect that you have MCAS, chances are it’s not going to be an easy road to diagnosis and treatment, for some may be for others not so. And for the majority of people, it really isn’t easy. And so I cannot stress enough the importance of strong mental health. So when you go in and see these multiple specialists, you can actually stand tall and hold your own and really assertively say, ‘look, this is clearly what’s happening. I don’t know what’s going on with me, but I can tell you exactly what’s happening and what’s causing it. But I don’t know why it’s happening’. So really being able to explain what’s happening clearly.
Dr. Katy Munro [01:08:18] Support groups for people with mast cell issues. I know there’s Mast Cell Action.
Anna [01:08:25] Mast Cell Action have been incredible at my years of crisis. They were absolutely there for me and had it not been for their resources, I’m not sure I’d be where I am now. It was only through using Mast Cell Action that I found Dr Croom and I realised that actually there are other people out there with bizarre responses to the most normal of things. And it’s not just me, because actually with MCAS, if you tried to explain what it was like to people, if I really went into detail, quite honestly, you wouldn’t believe me because it’s just absolutely bonkers. Absolutely bonkers. And also Mast Cell Action provided me with a community, so a community of other people that have this weird and wonderful life.
Dr. Katy Munro [01:09:17] Yes, I think it’s really helpful to know that you’re not alone with anybody that has any sort of impactful chronic illness. To know that there are other people who get it. Who understand. It’s really good. So it sounds to me, from what you’re saying, as if mast cell irritability and that sort of rapid response to those various triggers is something that if you are allowing your body to quieten, treating it with respect and doing all the things, avoiding the triggers, it can settle down and be something that becomes very much kind of quiescent and much more manageable. Bearing in mind that there’s still that tendency in the background to kick off if there are stressors on your body. Would you say that is how it feels?
Anna [01:10:08] Yeah. I mean, yes, in terms of positive mental health definitely can’t be the the fix-all to MCAS. However, keeping positive mental health within the journey is absolutely imperative. I mean, it’s so, so important. Medications and seeking help. I mean absolutely seeking help. And I think more than anything not giving up. I think quite truthfully, it would have been easier for me to have given up a few times. And I did, I prepared. I said my goodbyes. I wrote instructions on how we wanted our son to be brought up and this sort of thing but actually I had that fight inside me as well. And I’m so passionate to encourage people to keep their fight because there are answers out there. There absolutely are answers out there and help to move forward.
Dr. Katy Munro [01:11:03] I think yours is such a great story. And, you know, I’m so delighted to see how much better you are than when we first met a few years ago now. It’s really lovely to hear that and thank you so much for coming on the podcast and sharing your story, Anna. I’m hopeful that by doing this episode we will help to raise awareness of this condition, which is still almost in its infancy in doctors being aware of it and, sort of, research on how to best manage it. And guidelines and things I know are being drawn up and coming out and there is more and more information coming through. And I think the long COVID overlap with mast cell issues is really fascinating. So fingers crossed we will get more research funded on the back of a horrible pandemic.
Anna [01:11:56] Yeah. Oh, thank you so much for inviting me. Thank you.
Dr. Jessica Briscoe [01:12:02] Hello. I hope you’ve enjoyed listening to this episode of the Heads Up podcast. I’m not sure if you’re aware that we’re a charity, but we do rely on donations in order to keep going with both our podcasts and with our clinics that we run through the National Migraine Centre. If you have enjoyed the podcast, we’d be really grateful if you could visit the link, which is in the blurb in the podcast information, which will take you to our donation page. Here it would be great if you could donate whatever you feel that was necessary for us, however big or small, in order to help us keep going as a charity. The other thing that we really rely on in order for our podcast to reach as many people as possible is your ratings and reviews on whichever podcast platform you listen to us on. So if you could leave us a rating and a review, we’d be really grateful. Thank you.
[01:12:53] You’ve been listening to the Heads Up podcast. If you want more information or have any comments, email us on info@NationalMigraineCentre.org.uk. Till next time.
This transcript is based on a past episode of the Heads Up podcast and reflects information available at the time of broadcast – some facts may have changed or new treatments become available since.
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