S2 E6: CSF Leak

A National Migraine Centre Heads Up Podcast transcript

CSF Leak

Series 2, episode 6

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Dr Sarah Miller [00:00:00] Hi Everyone. I’m Dr. Sarah Miller and I’m a consultant neurologist and current clinical lead at National Migraine Centre. Thank you for downloading and listening to the podcast and I’m very sorry to interrupt, but I have an urgent message on behalf of our centre. The National Migraine Centre is a small charity that offers a unique service to headache sufferers, providing both clinical expertise and education. We understand that the next few months will be difficult for everyone, but as a small charity, the National Migraine Centre will be fighting to survive the impact of the COVID 19 crisis. So I’m asking everyone listening to the podcast to please donate what they can now. If you’ve been listening to previous podcasts meant to donate but did not quite find the time, please do it now. If you’re in the UK, and have been thinking of organising an appointment for a clinical review, please do it now. We are still open for business and are offering telephone and video consultations. Anything you can give will help the National Migraine Centre to continue providing headache care and education. The links to our Justgiving page to donate to the National Migraine Centre are in the blurb below where you downloaded the podcast. Our website address can also be found there and through it you can see how to arrange an appointment to speak to one of our specialists. Please make that donation today. All the money goes towards keeping the centre open and enabling our doctors to keep helping headache patients. Thank you in advance from the whole team. Stay safe. Stay well. And remember, tough times do not last but tough people do.


[00:01:15] Did you know our brains are surrounded by about 150 millilitres of fluid called the CSF. We literally have water on the brain. Welcome to the Heads Up podcast brought to you by the National Migraine Centre, the only UK charity treating migraine and headache.


Dr Jessica Briscoe [00:01:37] Hello and welcome to this slightly unusual episode from the Heads Up podcast. It’s unusual because I’m Dr. Jessica Briscoe, but I’m not actually with my colleague, Dr. Katy Munro.


Dr Katy Munro [00:01:48] Hello. I’m here but I am nowhere near you because, of course, with the pandemic and the COVID 19 restrictions, we aren’t able to meet up. So we’re in our separate places.


Dr Jessica Briscoe [00:02:00] We’re social distancing and isolating. So we can only apologise about any changes in sound quality. So because we’re not together, we’re not using our usual recording equipment. And as I said, we’re not together like we usually would be so it might be a slightly different feel than we usually have. But we think it’s really important in this time when you are probably spending more time at home to bring you information about headaches and this week, we’re talking about CSF leaks and orthostatic headaches. So moving away from migraine.


Dr Katy Munro [00:02:34] We are indeed. And we’re talking about CSF leaks and coincidentally, I was doing a telephone consultation with a patient last week who I’m pretty sure has had a CSF leak for two or three years and hasn’t been diagnosed so it feels very topical to be doing this.


Dr Jessica Briscoe [00:02:51] And I saw someone the other week as well, didn’t I, who I suspect might have it? Definitely feels like it’s a good time to be doing this episode.


Dr Katy Munro [00:03:02] So do you want to talk about itself? What is CSF?


Dr Jessica Briscoe [00:03:07] So CSF actually stands for cerebrospinal fluid and it surrounds the entire brain surface and the whole of the spinal cord. Bit of fluid, about 150ml of it, which goes around the nervous system. And essentially it’s involved in nutrition and the excretion of material from the central nervous system. So getting rid of the waste products and nourishing the brain and the spinal cord.


Dr Katy Munro [00:03:33] So it’s pretty important stuff, is what you’re saying.


Dr Jessica Briscoe [00:03:36] Absolutely vital I think is the key. And it’s something that can be- if there are problems with the- it’s obviously a pressurised system, because it’s a bit like a pipe type system, I always think of it. So it’s like water going through a pipe and if there are problems with the pressure, so if the pressure’s too low or the pressure’s too high, you can get all sorts of different symptoms. And today we’re talking about what happens if that pressure is too low.


Dr Katy Munro [00:04:03] That’s right. There is another condition called intracranial idiopathic hypertension. But we’ll do that another day, I think.


Dr Jessica Briscoe [00:04:10] Yeah, that’s a whole other topic.


Dr Katy Munro [00:04:13] So the other thing I wanted to just clear up, at the moment, we’re going to be talking about orthostatic headaches. So orthostatic headaches are those which are particularly triggered by changes in posture. So a headache where the patient is upright and is relieved by lying down is sometimes called an orthostatic headache and there are various different causes for that. But the one we’re concentrating on today is when the CSF begins to leak out through a small hole in the system and drains away. And so the brain is not floating in that lovely cushioning fluid.


Dr Jessica Briscoe [00:04:53] And this is quite an interesting topic for us, because although it’s rarer than migraine we do find that it can be misdiagnosed as migraine and often migraine that isn’t managed particularly well in the sense that it doesn’t respond to treatments because migraine isn’t the primary cause of the headache. So I think it is a really important condition to talk about because, you know, it’s one of those ones where it can be years before people realise that orthostatic headache is the cause and not migraine.


Dr Katy Munro [00:05:26] You can of course get an orthostatic static headache in a normal situation where somebody has had an epidural or something like that for a pregnancy delivery and sometimes people will get an orthostatic headache after that or if they’ve had a lumbar puncture or if they’re just not making enough CSF fluid for some reason and people who’ve got shunts inserted to try and correct their hydrocephalus, which is a condition of raised intracranial pressure, if they are not adjusted properly. So there’s lots of reasons why you might have an orthostatic headache.


Dr Jessica Briscoe [00:06:01] Yeah. So what are some of the features of this type of headache?


Dr Katy Munro [00:06:05] So the type of headache we’re talking about very typically relieved by lying down, they may sometimes have a thunderclap onset where suddenly you feel as if they’ve been hit by a bolt of thunder. And occasionally, after a while there can be a paradoxical orthostatic thing. So what happens is that the CSF drains down, the brain begins to realise that that’s happened, more CSF is produced to try and make up for it, and then the leak seals. And so people get a raised intracranial pressure. And so then the relationship standing in line can be a bit confusing. I think that’s what makes it so difficult to diagnose.


Dr Jessica Briscoe [00:06:47] Yeah, absolutely. I think also the problem is that some of the features of migraine can exist. Some people can get light sensitivity. It feels like it’s worse with movement. So sitting up, particularly if you’re sort of recumbent and lying down then you sit up, you can have it. And that’s quite similar to having a migraine. And also things like feeling sick with it too. And also people can have migraine and orthostatic headache because migraine is incredibly common.


Dr Katy Munro [00:07:23] That’s true, that’s pretty much true of all the primary headaches that we see that are rare is often people with migraine can unfortunately get a different type of headache. So it’s really all in the history, isn’t it, just taking a really careful history of what’s happened to people. And that can take us quite a long time in the clinic situation.


Dr Jessica Briscoe [00:07:41] And it’s not necessarily on the first visit that we’d pick this up actually. That’s a difficulty with it. Sometimes it’s when people have kept their diaries or started looking out for features of it, or as we ask more questions and get to know people, we might realise that there are more features of this type of headache.


Dr Katy Munro [00:08:00] I think the CSF leak kind of headache is very commonly worse when people have been standing for an extended period of time. So we often hear people saying, well, I was all right when I got up in the morning, but then it gradually came on worse and worse until the afternoon, and then I had to lie down. Then I felt a bit better again. So second half of the day headaches. We need to have that in the back of our minds. Quite often I think migraine starts during the night or in the early morning. We see people saying, well, I woke with the headache, but these are just clues really, aren’t they?


Dr Jessica Briscoe [00:08:33] Absolutely. I think it’s also important to think about other conditions where it’s much more likely. So the thing we tend to think about is postural orthostatic tachycardia syndrome or POTS and Ehlers-Denlos Syndrome, EDS, which is more of a hypermobility. Well it’s a spectrum of disorders for which hypermobility is often a key feature. Sometimes if people have any symptoms that make us think of those conditions, we’d be more likely to think about an orthostatic headache as well, or I certainly do.


Dr Katy Munro [00:09:09] Yes. I think more and more people are realising that they maybe are a bit more hyper mobile than their friends. And so Ehlers-Danlos Syndrome has actually about 13 different varieties of Ehlers-Danlos. There’s probably enough to talk about with Ehlers-Danlos and POTS to fill a whole other episode.


Dr Jessica Briscoe [00:09:29] Or a few actually.


Dr Katy Munro [00:09:32] We’ll get some expert guests on to talk a bit more about that at a later date. But it is one of the things that raises our suspicions. If people say, well, yes, I’m very flexible, I’ve always been very flexible, and sometimes that contributes to spontaneous puncturing or leaking of the CSF. Often these kind of headaches are worse also, if people do what’s called a valsalva manoeuvre, isn’t it, where if you pinch your nose and blow into your closed mouth that’s called a valsalva manoeuvre. It is a sort of straining manoeuvres and that can change the nature of the headache.


Dr Jessica Briscoe [00:10:08] Yeah. Because essentially that’s where you change the pressures in your body. So yeah, it kind of also changes the pressure in that fluid surrounding your nervous system and that can give that headache too. So coughing or straining are two particularly common forms of valsalva  manoeuvre, the sort of things that people do when they’re trying to pop their ears when they’re coming off the plane.


Dr Katy Munro [00:10:32] That’s it yes. I was trying to think of an example. Tend to do that on an aeroplane and I’m changing pressures in the aeroplane but yes, that’s certainly it. The headache when you get a CSF leak, the headache can be quite confusing as well because it can change. So with migraines we often see them being strongly one sided, but they can be on both sides and with CSF leak, it really can be anywhere, can’t it. It can be one side, across the front, across the back. Somebody I spoke to the other day had a lot of sinus pain and ear pain and was diagnosed with infections in his ear and also some dental problems. And speaking to Lisa Jamieson, who’s our guest on this episode and about this at a later date, she was saying that she thinks what happens is that there’s some pulling down on the brain from the CSF leaking and that can activate pain pathways and in other places so people having jaw pain or sinus pain, it can be a sign of a leak as well. The other thing she mentioned, which I don’t think we covered in our interview, was memory difficulties. So people often find that they just can’t remember things and their memory doesn’t function as it used to when they’re in the acute process of coping with a CSF leak. And that can go on for weeks, months and even, sometimes a couple of years.


Dr Jessica Briscoe [00:12:05] Yeah, you’re actually talking to a patient and someone who actually knows a lot about the condition on this episode. And she’s because she gives a lot of information about CSF leaks and her own experience.


Dr Katy Munro [00:12:18] Her own experience and also, she’s a real advocate. And we’re going to be talking later to somebody from the CSF leaks organisation. So I think it’s probably time to hand over to them.


Dr Jessica Briscoe [00:12:29] Perfect.


Dr Katy Munro [00:12:32] So today I’m joined by Lisa Jamieson. Thank you very much for coming to talk to me today. Lisa, can you tell us a bit about yourself.


Lisa Jamieson [00:12:40] Oh, thank you for inviting me. Yeah, my name is Lisa Jamieson. I’m a pharmacist by background, started my career in community pharmacy and then I worked in general practise in primary care pharmacy advising GP’s on prescribing, which I did for about a decade. I’ve also worked in clinical commissioning and I now work at the interface between the pharmaceutical industry and the NHS. And I’ve also got a specialist interest in nutritional medicine. So I did a master’s in nutritional medicine a few years ago.


Dr Katy Munro [00:13:10] So tell us about your experience with CSF leaks.


Lisa Jamieson [00:13:14] So about six years ago I developed quite an unusual headache that was like no headache that I’d ever experienced before. I have been a migraine sufferer in my twenties, in my teens and twenties, and it wasn’t like a migraine. And I developed some hearing loss in my left ear. And this headache continued for several days. And after about four days of this headache was there during the day, predominantly, I realised that it was worse when I was upright and every time I went for a lie down the headache reduced or got much better. So when I woke up in the morning I didn’t have a headache. But within about 15 to 30 minutes, maybe 45 minutes of getting up in the morning, the headache would start. And the longer I was upright, the more I felt unwell. And then I would start to feel nauseous and quite weak. And I felt that if I didn’t lie down, I felt like I was going to collapse. So I then with felt compelled to go and lie down. And after lying down for a few minutes, I would recover maybe 15/30 minutes lying down, I would recover and then I’d get up and it would all start again. It was like starting a timer from getting up. It was about 15 to 30 minutes and by 45 minutes of being upright by an hour, I felt like I needed to lie down again.


Dr Katy Munro [00:14:35] So quite different from the way that a migraine feels. How did you notice the difference when you first started getting the headache? Did it come on like a migraine and you thought that’s what it was or did it feel very different?


Lisa Jamieson [00:14:46] Felt very different. The pattern of where the pain was felt very different. For me, a migraine. I can almost draw a line across the middle of my head from the bridge of my nose all the way around to the nape of my neck. One side would throb and be painful. The other side would be completely pain free. So this felt very different. This was a headache that started at the back of the head and that would spread forwards to my forehead. And there was also as the headache progressed over a few days, I started to get a sensation like a dragging downward sensation when I was upright and it was almost like somebody was pulling on my spinal cord. There was this awful pain between my shoulder blades and a really heavy, downward dragging sensation inside my skull that felt very different to any other kind of headache I’d ever felt before, which is what prompted me then to go and seek help. And I went to see my GP after about nine days of experiencing this. It happened over an Easter holiday, so I couldn’t get an appointment.


Dr Katy Munro [00:15:55] That’s always the way, isn’t it.


Lisa Jamieson [00:15:56] So, on the Tuesday as everybody went back to work, I got an emergency appointment at my GP practise and explained.


Dr Katy Munro [00:16:02] So over that Easter holiday, had you been doing anything unusual? Was there anything that you thought, ‘Oh, it started when I bent down or lifted this or I have banged my head’.


Lisa Jamieson [00:16:12] No.


Dr Katy Munro [00:16:12] Or anything like that or just suddenly woke up one day and it came on gradually.


Lisa Jamieson [00:16:17] So it started on the Monday before Easter on the Sunday. And I developed this headache and the hearing loss in my left ear. And at first I thought I might be developing a cold or a sore throat. I was expecting a cough to come on or a blocked nose because the hearing sensation was like having your head underwater or like when your eustachian tube is blocked, the tube between your nose and your ear, when that gets blocked, when you’ve got a cold and you get a muffled sensation inside your ear.


Dr Katy Munro [00:16:48] Yeah. Very uncomfortable feeling.


Lisa Jamieson [00:16:49] Yeah. And I thought, well I’m expecting a cold particularly expecting a chest infection or expecting some of the respiratory symptoms to go with this, because that’s kind of what seemed to fit with my only other experience of having this sensation in my ear.


Dr Katy Munro [00:17:06] Did it make you feel dizzy as well?


Lisa Jamieson [00:17:08] Not dizzy in the sense of usual kind of dizziness, but more of a sense of the longer I was upright, I’d start to feel a bit spaced out. And almost feeling quivery and shaky in my legs almost like I’m losing the ability to stand up. I felt like I was going to collapse.


Dr Katy Munro [00:17:29] Right.


Lisa Jamieson [00:17:29] And if I didn’t sit down or, you know, support myself. There were a couple of times where I had to hold on to things because I thought I might fall over if I don’t hold onto something. And that happened a few times during the week as well. But because I work from home, a lot of the time, I was able to go and have these breaks and lie down.


Dr Katy Munro [00:17:48] Pace yourself.


Lisa Jamieson [00:17:48] I was studying at the time and I was writing essays. So I was at home that week and I kept going to lie down and every time I would lie down I’d, Oh, I feel okay now and I’d get back up again.


Dr Katy Munro [00:18:00] You’d think, ‘I must be fine’.


Lisa Jamieson [00:18:00] Yeah, exactly.


Dr Katy Munro [00:18:01] You start to make yourself think that don’t you.


Lisa Jamieson [00:18:04] Exactly. I’d feel okay after lying down for 20 minutes, so I’d go and lie down and check my email and, you know, do things that I would do normally anyway. And just having a little rest, but I’ll lie down and then I’d get back up and I’d feel okay for a few minutes and then it would start all over again.


Dr Katy Munro [00:18:17] So when you went to your GP with this slightly unusual tale, I’m sure most GPs would say that they don’t often hear stories quite like that. What did your GP think about it and what did they suggest?


Lisa Jamieson [00:18:32] Well, I know my GP really well.


Dr Katy Munro [00:18:34] That’s great.


Lisa Jamieson [00:18:34] She’s lovely. And I could see her going through all different types of headache. She was asking me all kinds of questions. Obviously, my pharmacy background, I have knowledge of different types of headache. I’ve also, you know, experienced migraine myself. I could see that she was looking to see in case I might have an inflammatory type of headache. She did some urgent blood tests, she gave me some pain relief, and she booked me in with one of her colleagues for the following day.


Dr Katy Munro [00:19:03] Oh, okay. To check-up on you and see how you were.


Lisa Jamieson [00:19:05] So she sent me straight off some blood tests to see if there was any kind of inflammatory- whether there might be temporal arteritis or any other kind of inflammatory problem going on on that side of my head. She did an examination. But this didn’t come in to part of the discussion. And then I went back the next day to see her GP colleague and I felt equally just as bad. In fact what happened was I took three doses of pain relief, so some over-the-counter pain relief that I’d already been taking. She prescribed two different types of painkiller. At that appointment, I went home and I took those and in that afternoon I put something away in a kitchen cupboard and I leant forward and it was about 2 to 3 hours into the middle of three pain relief and I thought I should have some pain control at this point. And as I leaned forward to put something away in a kitchen cupboard, I got this terrible surge of pain into my forehead. And I thought, this is really abnormal. This shouldn’t have happened. That sensation shouldn’t have happened with that amount of pain relief in my system. And that was when I knew this is not an ordinary headache. This is something quite different. So when I went back the next day, it was great in a way, I saw a different Dr. Fresh pair of eyes. She went through it all again and I said, I think there’s something really seriously wrong here and I think I need to go to hospital. So she admitted me to the medical assessment unit of my local hospital.


Dr Katy Munro [00:20:33] Okay. And you stayed in hospital for a few days, I think, didn’t you?


Lisa Jamieson [00:20:38] Yes. So it was just unfortunate the timings of who I saw, but I didn’t get to see the neurologist. I was admitted on the Wednesday. I didn’t get to see the neurologist until the following Tuesday, just because of how-


Dr Katy Munro [00:20:50] Nearly a week?


Lisa Jamieson [00:20:51] Nearly a week. And I didn’t have the MRI until after the weekend because you know how things work in hospitals.


Dr Katy Munro [00:20:57] Sometimes a little slower than is ideal.


Lisa Jamieson [00:21:00] So I didn’t get the MRI until the Monday and on the Tuesday the neurologist assessed me and that was when it was suggested that I may have- originally it was called a low pressure headache.


Dr Katy Munro [00:21:12] Yeah.


Lisa Jamieson [00:21:12] That was what it was described to me initially, but then it was talked about in terms of a spontaneous cerebrospinal fluid leak.


Dr Katy Munro [00:21:21] So did that show up on your MRI scan?


Lisa Jamieson [00:21:23] No. So I had a brain MRI scan on the Monday and then I had a spinal MRI scan on the Tuesday. And I was told that they couldn’t find the leak on imaging and that sometimes you can’t see a leak on imaging. But that doesn’t mean that there isn’t a leak there.


Dr Katy Munro [00:21:38] Yes.


Lisa Jamieson [00:21:38] And the neurologist was clear enough that he felt from my symptoms and my history that it was very clear that the pattern of my headache was a CSF leak and that that would be the way to manage my condition from that point on.


Dr Katy Munro [00:21:54] Okay. So we know that CSF leaks sometimes are quite hard to detect on MRI scans. And I think it’s very important in the clinic here that we always take a really careful history. And so it was really the history that gave it away once they listened to the whole story, wasn’t it?


Lisa Jamieson [00:22:15] It definitely was. And I think because of how I had taken notes on all the different days when I eventually saw that neurologist on the Tuesday, I was very, very clear about the history. By this stage, it’s sort of like- it was a two week history by this stage. The initial ten days even up to going into hospital were very clear. When I was up and about and out and about at home and then my further almost a week in hospital, it was very clear what had happened. And I had a very clear pattern because I had nothing else to do all day in a hospital bed except really monitor what my symptoms were doing. And I was trying not to just be in bed the whole time and I kept trying to see does the pain come back when I get up? So I’d go for a walk around the ward and I was getting this awful dragging sensation again, and then I’d have to go and lie back down. And obviously in hospital you were encouraged to get out of bed. And I was encouraged to get out of bed. And, you know, go and have a shower, will change your sheets. And then there’d be a delay because they’d want me to sit in the chair and not be in bed. And I was nearly collapsing sitting in the chair. I had to actually just lean over and put my head on the bed, even though there was no sheets there, because it was a really quite unsettling sensation. Nothing like I’ve ever experienced before.


Dr Katy Munro [00:23:27] Did it stay at the same level of pain throughout all of those days, or did you feel that the peak of the pain was worsening and worsening?


Lisa Jamieson [00:23:36] I think it was worsening because I hadn’t realised the impact of lying flat was what was needed. So in a hospital bed where your bed can incline, you know.


Dr Katy Munro [00:23:47] Tilted up a bit.


Lisa Jamieson [00:23:49] Tilted up and down and I wasn’t completely flat because you tilt up and down because you’re not lying down all day like you would at home. You want to be upright and you can talk to people. So I think actually that made me worse. And as soon as I was told this is a cerebrospinal fluid leak, a low pressure headache. I was then told to go in trendelendburg position and sort of invert my bed so that my head was down.


Dr Katy Munro [00:24:13] So your legs were slightly higher than your head.


Lisa Jamieson [00:24:15] And that was really uncomfortable. I could only manage a few minutes at a time for that, but that was to try and, you know, get the fluid back to my head.


Dr Katy Munro [00:24:22] Back up where you need it in your brain.


Lisa Jamieson [00:24:23] Exactly. But I was told by the neurologist who diagnosed the CSF leak, your bed needs to be completely flat and at times it needs to be inverted. So your head’s down if you can manage it. But it definitely should be completely flat. You should not be lying with your head slightly raised.


Dr Katy Munro [00:24:38] With your head even slightly off horizontal, yeah. So did they then suggest that this would just get better on its own or did they suggest any interventions when you were diagnosed?


Lisa Jamieson [00:24:49] Both. So I was told that it could just heal by itself because obviously in my case, it was a spontaneous occurrence. There had been no precipitating event that we could identify, hadn’t had an injury, and I hadn’t had any kind of lumbar puncture or a needle close to where might have caused this puncture. And so the usual advice for a post-dural puncture headache when it’s happened after a lumbar puncture is 1 to 2 weeks and it should heal by itself. So I was told that that was a real possibility, that 1 to 2 weeks this might heal by itself. I could go home, lie down and see what would happen over the next 1 to 2 weeks to see if it might get better by itself. I was also then offered the opportunity of an epidural blood patch, which is where they take blood out of your arm and then inject it into the spinal area in the hope that it will travel along and seal wherevers leaking.


Dr Katy Munro [00:25:46] And find the hole and seal it up.


Lisa Jamieson [00:25:50] But obviously in my case they didn’t know where the hole was. It hadn’t been from a lumbar puncture so they didn’t know exactly where the hole was. And because they couldn’t find it on imaging, I was told that it can be quite difficult to treat when they’re doing it in the blind way like that, where they’re putting blood in one particular part of the spine and hoping that it tracks along. It doesn’t always work. And so I thought, well, I’ll try that 1 to 2 weeks of bedrest because that seems a fairly logical thing to do, if that might work.


Dr Katy Munro [00:26:20] A manageable thing to do and if it was hopefully going to help, then a good thing to try, non medication.


Lisa Jamieson [00:26:27] Exactly.


Dr Katy Munro [00:26:28] But that of course, is assuming that you heal in the normal way. So tell us about how good a healer you are in your own body.


Lisa Jamieson [00:26:36] So that was something that I’d learnt through trial and error across my life from having any kind of surgery or wounds or you know, I’ve had some skin surgeries in the past and other types of surgery. I never, ever follow the leaflet that comes with the procedure that says, you know-.


Dr Katy Munro [00:26:56] So you already knew before this CSF leak happened that it was going to take you longer to heal from things.


Lisa Jamieson [00:27:02] Yes. Because I already knew that, for example, that usual might be leave sutures and stitches in for one week and then they’re taken out and your skin should have healed. But in my case, I’ve had surgeries where stitches have been taken out after one week and the wounds pop straight back open again. It’s all had to be redressed. So I already knew and I had already been given guidance from previous surgeons, let’s leave your stitches in longer. You clearly take longer to heal than an average person.


Dr Katy Munro [00:27:29] And did you know why that was?


Lisa Jamieson [00:27:31] I didn’t know why that was.


Dr Katy Munro [00:27:33] And were there any other things? I’m leading the witness here.


Lisa Jamieson [00:27:36] So I’d had a history of joint dislocations from being a young child. I had had a history of gastrointestinal problems, indigestion, irritable bowel syndrome. I’d had a history of musculoskeletal pains. I’d had a history of migraine. I’d had a history of autonomic dysfunction. And by that I mean that whenever I get hungry, I might feel shaky, sweaty, dizzy, light-headed, sometimes would faint and pass out when I’m hungry. Various of the symptoms musculoskeletal pain in virtually any joint that you might wish to name.


Dr Katy Munro [00:28:12] Yeah.


Lisa Jamieson [00:28:13] That would wax and wane. Back pain. Shoulder pain. Wrist pains. When I was doing my GCSEs as a teenager, I used to wear sweat bands on my wrist from writing. I’ve worn knee supports, I’ve had two knee surgeries for dislocating knees.


Dr Katy Munro [00:28:28] And did your knees dislocate spontaneously or were you a dancer or sporty or anything?


Lisa Jamieson [00:28:33] No, they just dislocated spontaneously so I could be walking along. It might be running, might be on a dance floor and I’d suddenly- bang- down on the floor.


Dr Katy Munro [00:28:43] Did anybody along the way question whether there was anything that combined all these under one heading?


Lisa Jamieson [00:28:51] No. Never.


Dr Katy Munro [00:28:52]  You just thought you had more than your fair share of stuff to deal with.


Lisa Jamieson [00:28:56] I just thought it was unlucky that I got this whole mixture of different things. And when I was an undergraduate as a pharmacist, I used to sit in lectures thinking, surely they’ll have come up with something that explains all of my things and I never did as a pharmacist.


Dr Katy Munro [00:29:09] Did anybody else in your family have any of those symptoms?


Lisa Jamieson [00:29:11] No, not in the same way as me. There was a discussion that my great granddad, my dad used to tell me that my great granddad, his knees used to dislocate.


Dr Katy Munro [00:29:20] That’s interesting.


Lisa Jamieson [00:29:21] But nobody in my immediate. My parents have not dislocating joints, not in the same way as me. But no, we’d had this discussion that I’d inherited my dodgy knees but, we didn’t really, they’d never been a name put to it or an explanation for it.


Dr Katy Munro [00:29:39] So how did you find out? I know you did find out what the name of that was, what happened then?


Lisa Jamieson [00:29:44] So when I had been sent home to lie down with my CSF leak, because I was studying for an MSC in nutritional medicine at the time I had access to the university library, so I started to just read journal papers, started to read about spontaneous intracranial hypertension, spontaneous cerebrospinal fluid leaks, and wanted to just read and understand why had this happened? Why had this just come out of the blue? What is this condition? And why does it happen? And I found a journal paper that said there appears to be an increased risk of spontaneous cerebrospinal fluid leaks in people who have a history of connective tissue disorders such as ehlers-danlos syndrome or marfan syndrome.


Dr Katy Munro [00:30:27] Right.


Lisa Jamieson [00:30:28] And I had never heard of either of those conditions in my training as a pharmacist. You know, they’re not conditions that have got drugs attached to them.


Dr Katy Munro [00:30:36] No. You don’t treat them with medications so they wouldn’t have walked into your pharmacy and said can I have something for this.


Lisa Jamieson [00:30:41] Exactly. So as a pharmacist, you’re training centres around conditions that are managed with medication. And so I’d never come across these either of these conditions. So I googled ehlers-danlos syndrome and I went to the ehlers-danlos support UK website and started to read about this condition and it was like one of the biggest light bulb epiphany moments of my life.


Dr Katy Munro [00:31:05] Like a firework moment.


Lisa Jamieson [00:31:06] It was. It was like, Oh my goodness me this is my entire medical history.


Dr Katy Munro [00:31:13] You ticked all the boxes. Right.


Lisa Jamieson [00:31:13] You know, joint dislocations, musculoskeletal pain, gastrointestinal problems, autonomic dysfunction, early varicose veins, you know, poor wound healing, easy bruising. I have the entire list. And it was suddenly, how come I’ve never heard of this?


Dr Katy Munro [00:31:29] Yes.


Lisa Jamieson [00:31:29] And this explains everything from my entire life, from being a little girl all the way, I was 40 at this point when I was reading this. And it had never come up. You know, I’d had surgeons say to me, you’re dangerous, you bleed much more than an average person. Your wounds don’t heal like a normal person, but nobody had ever put it all together.


Dr Katy Munro [00:31:51] Do you think that ehlers-danlos- and we are going to do an episode of the podcast on ehlers-danlos and go into it in a bit more detail. But do you think that it wasn’t known about because it is a rare condition or do you think that it actually is not very rare, but it just wasn’t really very understood and we are hopefully trying to get there a bit more.


Lisa Jamieson [00:32:14] I think when I first learnt about it I read that it was a rare condition and in the beginning I thought maybe it was a rare condition. I’m not convinced it’s rare anymore. In the last six years I’ve met countless people and really don’t think it’s rare at all. And on a few occasions when I’ve given lectures to people and I’ve spoken to a group of 30 people on four consecutive years in a particular setting, and every year one person in a group of roughly 30 women say that they’ve got it. So I really don’t think it’s rare at all. I think it’s just massively under-recognized, under-diagnosed and again, you know, the way that my education was driven by learning about drugs that have got, you know, licenced indication, I think the way that education is set up and the way that we all learn about things, our education is driven by the treatments that are available, and there are no specific treatments available for this condition. And I think because of how medicine is set up. It’s nobody’s fault in a way. It’s because, you know, all these different specialities, all look at you in one part, in isolation.


Dr Katy Munro [00:33:25] It’s categorised isn’t it. So you might have seen somebody about your knees but then somebody else about the fact that you were getting digestive problems, somebody else about the fact that you’d fainted. And those are very separate specialities. So it’s really, I think what we’ve become much more aware of working here at the National Migraine Centre is how we need to have a real overview of all the symptoms that people are having. And we’re certainly seeing a number, quite a high number of people, who when you ask them, do you think you’re hyper mobile, do you ever get, you know, rush of blood to the head if you stand, things like that. We’re beginning to think, actually, this isn’t particularly rare, it’s just not been asked about.


Lisa Jamieson [00:34:04] Exactly. Exactly. And I think also, again, going back to my pharmacy background, many of the medicines that are used to treat all of those things, you know, I didn’t actually ever go and see a gastroenterologist. I just kind of self-diagnosed. I knew I didn’t have any red flags that would send me to a gastroenterologist. A lot of the things that I needed to manage, the medicines that I needed were available over the counter. So I didn’t need to go and see a GP, you know.


Dr Katy Munro [00:34:31] You didn’t need a specialist.


Lisa Jamieson [00:34:31] Yes. I didn’t need a specialist. Indigestion medicine is available over the counter, you know, so I could manage a lot of those things. Self-manage. To me it just seemed like bad luck that I had a lots of different conditions that are all linked together with this one umbrella heading, because a lot of it I had managed myself, you know, I’d buy tubey grips and things to put on my knees or, you know, an orthopaedic surgeon, you know, two different surgeons that managed my knees, they didn’t ask about the rest of me. That’s not their job to ask, do you have gastrointestinal problems. You know, their job is to look at your orthopaedic problems. And so nobody was ever piecing it altogether. And I think that’s why in the end, it took me to piece all together because I wasn’t seeing all these different people and a lot of it I was managing holistically myself with over the counter treatments.


Dr Katy Munro [00:35:20] We know that there is a very good toolkit available for GP’s now, to try and help them identify and manage ehlers-danlos syndrome and linked conditions like POTS and Marcel Activation Syndrome. And we will be talking about that more in a later episode. POTS standing for postural orthostatic tachycardia syndrome, which is where people have a very rapid increase in pulse when they go from sitting to standing. So if you are a doctor listening to this podcast and want to learn more about it, go on the RCGP website and look for the ehlers-danlos toolkit. So going back to your story, Lisa, then, so you went home and lay down for quite a long time and then what happened?


Lisa Jamieson [00:36:07] So, as I say, I’d learnt about this- I’d realised about this not healing as quickly as one might expect. So instead of allowing 1 to 2 weeks, like the neurologist said, I thought I’ll allow myself 2 to 4 weeks because that seems logical for my body. So and this was when I realised during this 2 to 4 weeks. I thought maybe I should, you know, see what happens and I’ll maybe follow up with this epidural blood patch if I haven’t healed within 2 to 4 weeks. And then because of my background in nutrition, I was studying nutritional medicine at the time. I just decided to hypothesise to see if I’ve got this- when I realised I’ve got ehlers-danlos syndrome, a hypermobile type, maybe there might be a way that I could manage my condition with a nutritional approach. So I just started to experiment on myself and in the meantime I thought, well, if I can do that, that can’t do me any harm. And my target there was to try and see if I could strengthen my connective tissues in any way. So I took a sort of first principles approach to that to just see how can I make my connective tissues as strong as possible by giving myself the right nutrients and is there anything in my diet that I should avoid that might be aggravating any of the symptoms that I now realise are all related to connective tissue dysfunction. And then I thought, well, I need to just see what happens with this 2 to 4 weeks. Let’s see what happens. And when I didn’t heal after 2 to 4 weeks then I thought, now I know what I’m dealing with, now I realise, but there’s this underlying connective tissue disorder and I now know that I’ve got a very specialised headache disorder. Perhaps I should go and try and find a headache specialist.


Dr Katy Munro [00:37:49] Right.


Lisa Jamieson [00:37:50] So, you know, I asked my GP and I took myself off to a headache specialist for a second opinion.


Dr Katy Munro [00:37:59] So the first neurologist who had diagnosed knows you was a general neurologist.


Lisa Jamieson [00:38:05] Yeah,.


Dr Katy Munro [00:38:05] But you went off then to see a neurologist who’s actually specialising in headaches and there are a number of those around the country. And I think we would always urge anybody with a headache disorder to try and find a headache specialist neurologist because, you know, they have the expertise.


Lisa Jamieson [00:38:22] Yeah.


Dr Katy Munro [00:38:22] So what did the doctor say when you saw them?


Lisa Jamieson [00:38:26] So by this time I had a six week history from diagnosis and obviously an extra week pre diagnosis, well about two weeks pre diagnosis. So I had quite a reasonable chunk of information to give to the second doctor. And I went through it all. I had a very clear history to give to him and I went through it all. And he was convinced at that point that it definitely was. And I had asked for my MRI scans to be transferred to him as well so he and his team could look at that. But he suggested, well, it’s six weeks later now, we’re further down the line, we’ll repeat the MRI and see if we can find anything because, you know, things may have changed on the imaging, so let’s have another look. So I had a second lot of MRIs, head and spine, with and without contrast. So the first lot were without and then they injected contrast and I had another and the same thing happened. They couldn’t see the leak on imaging.


Dr Katy Munro [00:39:28] But they didn’t think it had healed because you were still getting all the symptoms.


Lisa Jamieson [00:39:33] Yes. So, I still was bedridden, housebound for most of the day. My journey to the second, I’d had to come in from Surrey into London and had to lie down in the back of the car. I couldn’t manage public transport. I’d been completely housebound, basically for these six weeks. I could only be upright for 15 to 30 minutes at a time before I needed to lie down again. So I could only manage very small amounts of time basically to be upright, to eat or to use the bathroom. I may have a five minute walk around the house each day and then I’d lie back down again. So it was still very, very clear that the symptoms had not changed. And so at this point, I’d already figured out for myself about the ehlers-danlos syndrome and this headache specialist, after taking my full headache history, said, now tell me about the rest of your medical history.


Dr Katy Munro [00:40:27] Right.


Lisa Jamieson [00:40:28] And the first thing I said was, well, when I was a little girl, my joint’s used to dislocate, and instantly he said, so you’re hyper mobile, you must have ehlers-danlos syndrome, that explains everything. And he went off on this tangent and did a full assessment of me in terms of my history related to everything that you’re at risk of with hyper mobile ehlers-danlos syndrome and said, I’m convinced that that’s what you’ve got. I’ll give you a provisional diagnosis, but I’m not a rheumatologist specialist. You need to go and see somebody who is a specialist in this condition.


Dr Katy Munro [00:40:59] So beginning to pull people into the team that were going to help support you through this.


Lisa Jamieson [00:41:03] So I was referred on to a specialist rheumatologist that specialises in hyper mobile ehlers-danlos syndrome and other hypermobility disorders. And at that point then when he knew what he was dealing with, the headache specialist knew what he was dealing with, in terms of my risk of poor healing, he said, I don’t want to make a hole to find a hole, so I don’t want to measure your cerebral spinal pressure.


Dr Katy Munro [00:41:31] Yes.


Lisa Jamieson [00:41:32] Because by doing a lumbar puncture to measure your pressure, I’m creating a new CSF leak, and because of your history of poor healing, I might be making you worse.


Dr Katy Munro [00:41:42] Giving you another CSF leak in a different site.


Lisa Jamieson [00:41:44] Exactly. And I was really grateful for that conservative approach because he was very clear what he was dealing with, with me.


Dr Katy Munro [00:41:51] There was a logic there wasn’t there, and that must have been a huge relief for you at this stage to think, right here I’m in safe hands now.


Lisa Jamieson [00:41:59] When you meet somebody that understands and knows and can piece everything together, it was such a relief. And so we talked about my, you know, continuation with the conservative approach with bedrest and to try and stay hydrated and, you know, trying to not exert myself, not pushing myself, not being upright for too long. If I could do everything I needed to do being upright for 30 minutes, I could stop a headache coming on and then I could lie back down again. So I was managing my life in that way. I’d be upright to eat a meal, and I’d go and lie down. I’d be upright to have a shower, I’d go and lie down. So I was managing my day like that. It was not ideal. It was really, you know, it was a horrible place to be, being bedridden like that.


Dr Katy Munro [00:42:43] Yeah. A huge impact.


Lisa Jamieson [00:42:43] Luckily, I’ve a spouse to help and look after me, but it was really quite difficult. But I thought, well, I could go down the epidural blood patch route and I was thinking that that was what I was going to do. But actually there was a personal situation. I had a friend’s wedding coming up. And  by this point, six weeks into it, I’d joined some online patient groups and I had learnt from other patients that you can feel worse before you feel better after an epidural.


Dr Katy Munro [00:43:14] After a blood patch.


Lisa Jamieson [00:43:15] Because of the pain in your back from the actual procedure. And I had this friend’s wedding coming up and I thought, well, I’d already spoken to her in depth about the situation that I was in. She’d been to see me a few times and we said, you know, we’d arrange that I could lie in the car, go into the church, go and lie down again, go to the reception, go and lie down. And then at the reception there was going to be a sofa that I could go and lie down on periodically. And so I thought, well, if I go to her wedding, then I will book in the blood patch for the following week.


Dr Katy Munro [00:43:43] So you planned your horizontal places for that special day?


Lisa Jamieson [00:43:48] Yes.


Dr Katy Munro [00:43:48] And that went off all right?


Lisa Jamieson [00:43:49] And that went great. But actually what happened, and this is total serendipity, about two or three days before the wedding whilst lying down at home one evening I developed this new and different pain.


Dr Katy Munro [00:44:01] Oh no.


Lisa Jamieson [00:44:02] And I thought what’s this? The pain started whilst I was lying down and I felt compelled to sit upright.


Dr Katy Munro [00:44:09] Oh.


Lisa Jamieson [00:44:10] And so I would sit up right. And then the pain would ease. And then the old CSF leak pain would start again. And then I would lie down and I yo-yoed in this yo yoing up and down position. But because again of the online patient groups I’d already learnt that you can develop a rebound high pressure headache when a CSF leak heals.


Dr Katy Munro [00:44:33] Because your brain is trying to make some sense of does it need more CSF or less CSF, I presume is that what’s happening?


Lisa Jamieson [00:44:41] So what happens there is that, and I’ve read it in various papers in the literature, is there’s a theory that whilst you’re leaking your body increases CSF production to compensate for the fact that it’s leaking away. So it either increases production or decreases absorption. Nobody really knows for sure. But basically your ability to retain CSF in the cerebrospinal system increases. So when the leak heals, you’ve then got too much.


Dr Katy Munro [00:45:10] Right.


Lisa Jamieson [00:45:10] So you develop a rebound, high pressure headache when it heals. And so at that point, I really didn’t know what was going on.


Dr Katy Munro [00:45:17] But why then were you getting both?


Lisa Jamieson [00:45:20] So, I think for about a week, I was still yo yoing between the two states.


Dr Katy Munro [00:45:25] So maybe a little bit of a leak, then it would heal a little bit, and then you have a bit too much CSF and then you have to sit up and oh.


Lisa Jamieson [00:45:31] And the wedding was right in the middle of this week of this transition over into this rebound high pressure state. So I went to my friend’s wedding in the middle of the week and then by the following Monday. So it was the Monday when it started. The following Monday I was in full blown rebound, high pressure state and that felt completely different. That felt like somebody was trying to inflate a ball inside my skull.


Dr Katy Munro [00:45:55] Yeah, yeah.


Lisa Jamieson [00:45:55] There was pressure in my ears behind my eyes, pressing out towards the back of my eyes, in the soft tissues, in my palate and behind my nose and in the roof of my mouth. It felt like my head was going to explode.


Dr Katy Munro [00:46:09] Almost like a balloon being inflated in your brain.


Lisa Jamieson [00:46:12] Exactly.


Dr Katy Munro [00:46:13] Pushing out. You said right at the very beginning, your hearing had gone very muffled on your left side, I think you said.


Lisa Jamieson [00:46:20] Yes.


Dr Katy Munro [00:46:21] Did that come back during the few weeks that you were lying down? Was your hearing fine then or did it carry on being muffled all the time?


Lisa Jamieson [00:46:30] So the the muffled hearing was bad when I didn’t know what was wrong with me when I was trying to be upright all the time.


Dr Katy Munro [00:46:36] Yeah. Yeah.


Lisa Jamieson [00:46:37] And gradually over the time that I was lying down. So in the beginning, maybe after a couple of weeks of lying down, the hearing returned to normal.


Dr Katy Munro [00:46:47] Okay.


Lisa Jamieson [00:46:47] So whilst I was managing the pain and the symptoms by lying down and not too much CSF draining away and my brain not sagging under the force of gravity too often the hearing corrected itself.


Dr Katy Munro [00:47:01] The hearing was fine. But then when you had the high pressure, did that make both ears feel a bit funny?


Lisa Jamieson [00:47:06] Yes, and so whilst I had the CSF leak I had- I called it, well, it was a type of tinnitus, but the way I would describe it was like the whirring of a washing machine in another room.


Dr Katy Munro [00:47:20] Yeah.


Lisa Jamieson [00:47:21] Like a very low hum. Like a whirring, like a washing machine. It was only there when it was really quiet. So if I was sort of lying in my bed at night time I could hear this tinnitus.


Dr Katy Munro [00:47:32] So more of a whooshing rather than a high pitched whistling noise, which is often what people get with tinnitus.


Lisa Jamieson [00:47:40] Exactly. So when I developed the rebound high pressure state and I had this sensation of like a ball or a balloon being inflated inside my head. I then develop this high pitched, whizzing, high pitched, screeching tinnitus.


Dr Katy Munro [00:47:54] Oh lord.


Lisa Jamieson [00:47:54] That was only there when I was lying down.


Dr Katy Munro [00:47:59] Right.


Lisa Jamieson [00:48:00] So, you know, obviously lying down increases CSF pressure. So when it’s already high, when you lie down, it gets even higher. So I’d get this high pitched, whizzing tinnitus, that was a screeching noise. And then I would sit up and that would gradually, over a few minutes, disappear.


Dr Katy Munro [00:48:18] So could you sleep through all of this, were you managing to get some rest?


Lisa Jamieson [00:48:22] Whilst I had the CSF leak, in the beginning because I’d been pushing through because I didn’t know what was wrong with me and I’ve been trying to spend as much time as possible upright because I didn’t know that actually I needed to lie down to help manage things, sleep was more difficult because the pain would take longer to go away, the longer I’d been upright. So in the beginning and obviously in hospital sleeps is quite elusive for everybody in hospital.


Dr Katy Munro [00:48:51] Yes, wake you up every few minutes to do your blood pressure.


Lisa Jamieson [00:48:54] Exactly. So sleep in hospital was quite difficult. When I came home the first couple of weeks because obviously I had not been flat whilst I was in hospital. I’d got worse whilst I was in hospital. But over the first couple of weeks I was still in quite a lot of pain. More or less even when I was lying down. So sleep was difficult then. Gradually, as the pain reduced whilst I was lying down to manage it at home, I was able to sleep with the CSF leak when I got the rebound high pressure that changed everything because lying down made it worse. And what I, again through learning from other patients and learning, you know, sort of reading literature, I’d learnt that it’s recommended that you recline at about a 45 degree angle when you’ve got raised intracranial pressure. So I just created a makeshift pillow.


Dr Katy Munro [00:49:46] Like a wedge.


Lisa Jamieson [00:49:47] Like a wedge to prop me up. And so I started to sleep, reclined rather than flat, and I was able to sleep that way because that really helped with managing the high pressure states. And I then went back to see my headache neurologist about 2 to 3 weeks after this high pressure state had started, it peaked after about this first week of this yo yoing between low and high pressure. And it was really bad for about two weeks. By the time I saw the headache neurologist again, it had already started to reduce ever so slightly. It wasn’t as bad as it had been right at the beginning, and he suggested ‘I could give you some medication to try and reduce your intracranial pressure or we can see whether or not this might correct itself’. And in his experience, he’d already had other patients where it had corrected itself within about 2 to 3 months.


Dr Katy Munro [00:50:36] Right. So no question then of you having an epidural blood patch because the leak was pretty much sealed then.


Lisa Jamieson [00:50:44] Yes.


Dr Katy Munro [00:50:44] And hopefully your body’s mechanisms for balancing things were kicking in so that it was going to regulate, that was the hope. Is that what happened?


Lisa Jamieson [00:50:54] It did but again it took much longer than 2 to 3 months. It actually took about two years to completely go back to normal.


Dr Katy Munro [00:51:00] So you were in a high pressure state for two years?


Lisa Jamieson [00:51:03] Yes.


Dr Katy Munro [00:51:04] After the inital leak.


Lisa Jamieson [00:51:05] The first month was bad and then it started to reduce gradually and I just learnt how to manage it really. I learnt how to manage it with just conservative measures, how I would sit, how I would recline. There were various things that would make it worse, like tight clothing pressing on my spine was almost like it would impact the flow of cerebrospinal fluid.


Dr Katy Munro [00:51:29] And I guess coughing or bending or straining, would that kind of thing?


Lisa Jamieson [00:51:31] Yes, all of those things. Having a full bladder, anything that raises intra abdominal pressure. Anything that would, you know, tight waistbands even, anything that would squeeze fluid upwards or constrict its flow would make the symptoms worse. The other things that really made it worse was getting out of breath. So talking.


Dr Katy Munro [00:51:51] So you couldn’t exercise?


Lisa Jamieson [00:51:52] Yes. So talking and walking at the same time were really tough. I could walk slowly. But I couldn’t talk. Right in the beginning I couldn’t talk and walk at the same time because obviously you need more oxygen in your brain. And if you’re using exercise, you’re exercising your muscles and you’re talking you’re obviously you’re not breathing in and out as deeply. And so if I walked slowly and breathed really deeply, I could keep the pressure, stop it from spiking.


Dr Katy Munro [00:52:19] Yeah.


Lisa Jamieson [00:52:20] And that could feel relatively comfortable.


Dr Katy Munro [00:52:23] Did painkillers make any difference? Was there any point in taking painkillers for any of these headache pains or not really?


Lisa Jamieson [00:52:30] I did take painkillers in the beginning with the CSF leak, but I decided through choice that I wanted to see what the underlying pain was like so I would stretch out the doses. So rather than thinking, Oh, it’s 4 hours since the last one, I should take another pain relief. I would see, has the pain come back? How bad is it when it comes back? Is it less than it was the last time? And so I wanted to understand for myself to monitor. I didn’t want to just mask it and then overdo it because I was masking the pain.


Dr Katy Munro [00:53:01] When you did take the painkillers, did it ease it a bit?


Lisa Jamieson [00:53:05] It did, yeah. It would take the edge off. It would take the edge off. But really, the main way of managing the pain was lying down when I had the CSF leak, because there were times where I would take pain relief and then push being upright. And so, for example, about eight weeks into the CSF leak, I’d not been out anywhere. And a friend said, you know, come to my house, I will come and get you and you can lie in the back of my car, come to my house, we’ll have some lunch. And I sat at the lunch table too long because I was with some other friends and I wanted to not be unsociable. And I sat at the table for about an hour and a half, and it took me two days to get over that pain level that that created through being upright for too long. And I’d set myself back. My recovery, I’d been able to stretch out the pain relief and have less. And actually I needed more pain relief again. And I thought that’s not sensible.


Dr Katy Munro [00:53:58] So it was kind of falsely giving you reassurance that you could do a bit more, which actually was not in your best interest.


Lisa Jamieson [00:54:02] Because then when you’re back home and you’ve got nothing else to think about except what’s going on with your head. I felt worse than I’d felt a week before because I was trying to keep a diary of my symptoms and


Dr Katy Munro [00:54:16] Trying to normalise your life a bit more.


Lisa Jamieson [00:54:16] Yes. Yeah. And so I thought, I’m not going to push it anymore. I need to just manage this in a sensible way by lying down. And when I start to feel bad, go and lie down. And stop worrying about what everybody else thinks. And just do what I need to do. Because actually by being polite, sitting at the table, I’ve got two days of extra pain to deal with now.


Dr Katy Munro [00:54:37] Which is hopeless. So at the end of two years, were you then back to a relatively normal life or did anything else happened? You haven’t had a second CSF leak, have you?


Lisa Jamieson [00:54:48] No.


Dr Katy Munro [00:54:50] Phew.


Lisa Jamieson [00:54:50] I don’t think so.


Dr Katy Munro [00:54:51] I was holding my breath for the answer there.


Lisa Jamieson [00:54:51] Well whilst I was recovering, so this all happened- you know, obviously it started at Easter. I was ill over the summer. By about November time, that rebound high pressure had reduced a little bit. I’d started to increase my stamina for exercise a little bit so I’d started, whilst I had the CSF leak I used to try and go out and do a 15 minute walk each day to just try and keep my muscles moving a little bit. I started to try and build this back up and by this point I had the ehlers-danlos syndrome diagnosis. I’d been sent for specialist physiotherapy to support me in terms of, you know, rehabilitation from having been lying down for three months. And on the advice of the physiotherapist she said try and increase your stamina for walking.


Dr Katy Munro [00:55:37] Yeah.


Lisa Jamieson [00:55:38] Try and go a bit faster rather than just slowly, you know, like sauntering and dawdling pace. Try and increase the pace to get your heart rate going a little bit. So I did that and actually I think that opened up the CSF leak again. So for about two weeks I was yo yoing between high and low pressure again. But I don’t think it was as bad as the initial leak. I think maybe whatever opened up again was very small and it seemed to heal again in about the space of about two weeks. So for about two weeks, in November I was back poorly again and I had to lie down periodically quite a bit in those two weeks. But it did seem to heal and I went back to then the high pressure state again. So I thought, well, let’s scale back, let’s go back to being my dawdling pace and just build up when I feel like I’m ready rather than when somebody else is telling me to and just listen to my body. And that was what I’ve learnt through all of this is the most important thing is to just listen to your own body.


Dr Katy Munro [00:56:36] Take the signals, yeah.


Lisa Jamieson [00:56:36] And take the signals and don’t push it. Don’t push yourself. You can’t rush nature. That’s what I’ve learnt. You just have to wait.


Dr Katy Munro [00:56:42] Frustrating though.


Lisa Jamieson [00:56:43] It is frustrating. And you think, you know, I want to get back to full action again. So I ended up having quite a bit of time off work, because I’m self-employed I was able to do a couple of tiny little projects whilst I was recovering, but I didn’t really go back to work until- so it was Easter when I was ill in April and I didn’t go back to work until the following February. So I was quite unwell for all that time. I didn’t drive at all for six months, so I didn’t drive at all between April and October. I couldn’t. I didn’t feel safe to be turning my head and being able to act in a kind of urgent emergency situation. And so I didn’t drive between April and October. I went back to work the following February, by which time I was still having headaches. I was still having the rebound high pressure pain. I still had to be careful when I went back to work. You know, I couldn’t wear tight clothing that would impact on my- you know, what I would wear for work would be different. And so then gradually I got better over that year. So it was 2014 when I was ill, over 2015, I gradually got better.


Dr Katy Munro [00:57:51] And so for people who might be listening, who might be thinking, Oh gosh, I’ve had a CSF leak, or I’m in the throes of it, I’ve just been diagnosed. There is hope. These things can heal.


Lisa Jamieson [00:58:02] Yes there is.


Dr Katy Munro [00:58:03] You can get back to a normal life with the right support and also being very careful of yourself.


Lisa Jamieson [00:58:08] Absolutely. And now I would say since- because all of the whole- other story for another day. Everything I did with my nutrition, my ehlers-danlos syndrome is better than it’s ever been. I don’t have musculoskeletal pain on a daily basis anymore. I don’t have gastrointestinal dysfunction anymore. I don’t have autonomic dysfunction anymore. I don’t have the headaches that I used to experience to the same degree. Everything about what I did with my nutrition and my experiment, has improved everything. My, you know, wounds heal more quickly, just ordinary blemishes or you might cut yourself or burn yourself, whatever, when you cooking and they all heal much more quickly than they would have done previously. And so I’m now I would say I’m healthier than I was before my CSF leak on a day to day basis. I feel fitter and I feel more well than I ever did before.


Dr Katy Munro [00:59:01] And hopefully your risk of getting further CSF leaks is reduced because generally your body is in a better condition.


Lisa Jamieson [00:59:08] Hopefully.


Dr Katy Munro [00:59:09] From a healing stand point.


Lisa Jamieson [00:59:09] Touching wood here but yeah.


Dr Katy Munro [00:59:09] Yes, let’s not jinx anything.


Lisa Jamieson [00:59:14] Yeah, exactly. I think I feel like my body is much healthier than it was before. I think my tendency towards inflammation is lower. I used to experience seasonal asthma. I used to experience all kinds of you know, I’m sure you’ll cover it when you cover mast cell issues related to ehlers-danlos syndrome. I definitely have a history of all of that with skin problems and itching and rashes. And, you know, I’ve had a diagnosis of eczema and a irritant contact dermatitis and seasonal asthma and all of those things that link together with the allergy type symptoms. I’ve had a history of all of those, and even all of those are so much better as well now.


Dr Katy Munro [00:59:54] Can I just ask you, we see a lot of people with severe headaches of whatever cause and one of the things that really affects is their mental health. It sounds as if because you’re somebody who is kind of looking and finding out things, you had a certain amount of control in terms of making your own discoveries and things, but it still must have been quite lowering for you. Did you find that your mood changed a lot?


Lisa Jamieson [01:00:22] It was. It was really difficult. I think the hardest point for me was when I didn’t know what was wrong with me. That was really quite scary.


Dr Katy Munro [01:00:29] You don’t know what you’re fighting, do you know? That’s very hard then and you feel out of control, I guess.


Lisa Jamieson [01:00:35] Exactly. And so those first couple of weeks were really quite difficult because I didn’t know what was wrong and I didn’t know. I knew that there was something very seriously wrong and clearly it was serious. I had to have nine months off work, so it was very seriously wrong with me. But I couldn’t get anybody to, you know, tell me what was wrong. People didn’t know. I saw a lot of doctors in that inpatient admission and it was the last one that found, you know, that suggested this might be what it is. So that was quite scary.


Dr Katy Munro [01:01:08] Yeah.


Lisa Jamieson [01:01:09] And so that was quite hard emotionally and yeah. In terms of mental health, that was quite a low point. I think once I knew then what I was dealing with, I could then be more positive about it because I could then learn, well, this is a condition that can be managed, it can be treated, you can recover. I know what I’m dealing with now.


Dr Katy Munro [01:01:29] The hope is what you need, isn’t it.


Lisa Jamieson [01:01:31] So once I had that hope, I then felt very different about it. And once I was able to start to learn, to understand, to start to hypothesise. And I had a goal then with this whole nutritional approach, which was phenomenally life changing for me, and it was a total blind experiment. Nobody’s ever done it before. It was purely about a first principles approach, and it had a massive impact on every single part of my life. But whilst I was housebound, bedridden, that was really quite difficult. You know, I had to drop out of life. I couldn’t participate in all the things that I would have done normally. I couldn’t work. That’s a big thing for me. I love working. That was really, really quite hard. But what I tried to do during that period was to hold onto that hope and try and manage my mood in the most positive way that I could. So for me, I’m a big fan of comedy. So every day, my aim was at least 2 to 3 hours a day, I would watch comedy on television. So whilst I was lying down, so I was watching stand up comedians. I was watching reruns of, you know, Friends and all kinds of other comedy sitcom rom com panel shows. Anything that would make me laugh, that would lift my spirits, you know, laughter is the best medicine and it even says in, you know, there’s a lot of literature now to back that up, isn’t there? You increase your, you know, laughter that you can actually change a lot of things going on in your body. So that was a big part for me. And also the advent of social media that was just amazing to me.


Dr Katy Munro [01:03:08] Connecting with other people who have had the same thing. Very helpful.


Lisa Jamieson [01:03:11] That was amazing for me. And I was really, really lucky because I just was Googling when I was trying to figure out what on earth is going on. And I found a blog from somebody else who had a spontaneous cerebrospinal fluid leak. And so I wrote to her about her blog and said, you know, I’m really grateful for what you’ve written because it’s really helped me learn about this condition from another patient. And she said to me, there are some online patient groups on Facebook. Join these. So I did. And that was life changing. Suddenly because there was obviously there was no way that I was going to meet anybody in my close personal friendship group who had this condition. I needed to reach out to strangers and wider. And so when I joined these online groups and I conversed with people in the UK, in America, in Australia, in other countries, and that was life changing, just learning about other experiences. And so when you haven’t got a doctor to ask because they don’t know about it. You’ve got another patient who can say, Have you experienced this symptom? How did you manage that? And when you can learn and share in that way, I’m still in touch with quite a few of those people even now.


Dr Katy Munro [01:04:20] Patients are really the experts.


Lisa Jamieson [01:04:22] Absolutely.


Dr Katy Munro [01:04:23] Especially for things like this, where, you know, as doctors, we don’t necessarily see it very often. But we have to listen carefully. And of course, there is a CSF leak association now, isn’t there. Are you involved with that?


Lisa Jamieson [01:04:36] So I know many of the people. I mean, that website. It wasn’t a charity when I was unwell, it wasn’t a charity. It was just a website. And that really, really helped me because they’d already put on their website different hospitals who have an interest. And that was what led me to the headache specialist initially. So that really changed everything for me. And then whilst I was unwell, an American charity was also set up. So there’s the CSF Leak Association in the UK. There’s a spinal CSF leak foundation in the USA. I know a lot of the people who are running these places because we’re all patients and we’ve all met online. So yes, I know a lot of the people involved in both of those charities.


Dr Katy Munro [01:05:21] So we are going to be talking later in this episode to somebody from the CSF leak association to get a bit more information about that. But have we come to the end of your story? The story of your leak and hopefully onwards to a healthy and happy life?


Lisa Jamieson [01:05:38] Yes, I think so. I think I’m hoping I don’t ever want it to happen again. It was a really horrible.


Dr Katy Munro [01:05:48] No. I wouldn’t wish it on you ever again.


Lisa Jamieson [01:05:48] Exactly. But I am grateful for everything that it taught me. It’s been really life changing. And I’m grateful now that I understand that I’ve got Ehlers-Danlos syndrome because knowing that as well was a key thing as well.


Dr Katy Munro [01:05:59] We’re very grateful for you coming and spending some time talking about this because I think it’s one of those things are hearing it from somebody who’s been through is just so helpful for people who may have it, people who may know somebody with it, and also for doctors who might have somebody walking through the door saying, I’m getting a headache and I have to lie down all the time. And it may just make them think, hang on a minute. What could this be? So thank you very much, Lisa.


Lisa Jamieson [01:06:24] Thank you for having me.


Swati Raina [01:06:28] Hi Clare. Thank you for joining us on the Heads Up podcast. Clare joins us from the CSF Leak Association. She’s one of the trustees there. Clare, could you tell us a bit about your organisation?


Clare [01:06:40] Sure, of course. Firstly, thank you so much for the opportunity to come and speak to your podcast audience. I am a subscriber and a fan. I find it really helpful. First off, about what is a leak. So a CSF leak is where there’s a hole, a tear, or a defect of some description in the covering of the spine and the brain. And that’s called the dura, which is the covering. And what happens is that the tear allows some of the fluid to leak out. And this fluid is really important for cushioning the brain. And when it leaks out, what you find is the brain can sag within the skull and basically pull on all the nerves attached to your whole system, causing an awful lot of pain. And the one sort of unique aspect of having a CSF leak is that there’s a postural element to it. So you will have more symptoms when you’re upright and less symptoms, and sometimes you even feel quite close to normal, when you’re lying down. Now I must caveat that and say that is for the vast majority of leakers. But not every leaker will have the classic presentation of a postural headache. And the postural headache. It varies in time from onset from a couple of minutes, at it’s kind of worst it could be a couple of hours and you could experience sort of second half of day headaches, they’re called. And I think it’s when the association between your headache and your posture, when that isn’t as strong, I think that’s when some clinicians can make a misdiagnosis and attribute the headache to something else, something like migraine. And I thought that would be of interest to your audience, we are aware that many people who get diagnoses of leaks were at some point in time probably are told that they have migraines. That’s not to say that you can’t have more than one kind of headache at a time. Of course you can. And so I for one, I have a leak and I also suffer from migraines. But for some people the picture is a bit confused and your doctor might not be sure if you have a leak or migraines or a leak and migraines or other things as well. So you could be quite unfortunate and have a whole plethora.


Swati Raina [01:09:09] So for somebody like me who- I get migraines. And how do you differentiate if that’s the case?


Clare [01:09:19] Yeah, it can be difficult. I mean, the classical presentation is that within a few minutes you have horrendous head pain. Mostly it’s the whole of your head rather than one side. It also tends to come with- so we like to say a lot of times- it’s not just a headache and actually it’s not a headache, it’s head pain. I’m sure many migraine sufferers would agree. Sometimes headache makes it feel a bit benign. For a CSF leak, you also get pain in your neck, pain in your back between your shoulder blades. You can have hearing changes, double vision, nausea, vomiting, brain fog, facial numbness. So although there is still an overlap because I know you can get a lot of neurological signs and symptoms when you have a migraine. I suppose the fact that it happens every time you’re up and it’s kind of constant. And the other thing as well obviously that you have with CSF leaks and you don’t have as much of it with migraine, is that if you do a brain MRI with contrast, you might find some signs of spontaneous intracranial hypertension, which is that brain sag that I was talking about, along with a couple of things. And then if you’ve got a hole in your dura that lines your spine, you may also have a collection of that fluid in the epidural space or a subdural space. I might be wrong. Can’t remember which one it is. But basically you have a collection of fluids outside the sack where it should be. And that sack can be quite easy to see on an MRI.


Swati Raina [01:11:06] Okay.


Clare [01:11:07] If you’re suspicious or if your doctor is suspicious of a leak, then going for imaging might help you differentiate between the two. But also listening to the history. Leaks can sometimes be caused by trauma or any kind of intervention in the spine. So unfortunately, we see a lot of women who’ve had an epidural with a C-section or normal birth, and they end up with a spinal CSF leak, which I feel horrendously sorry for them because they have this little bundle of joy, and yet they can’t be upright for more than a few minutes at a time. Very difficult, you can imagine So if you’ve intentionally put a hole in the spine, then you’re at risk of developing a leak. Most people, to be fair, will self-heal from an epidural needle, which has gone a little bit too far and punctured the dura. Normally the advice is to stay a few days in bed and see how you are after that. And most people are fine. But actually there’s a significant minority of people who aren’t okay and who have persistent symptoms. So that’s kind of one group of people, anything where you’ve had a medical intervention around your spine. Then it could be trauma, so that happens with maybe a car accident. It’s happened that you can have a cranial leak maybe if you’ve damaged the bones behind your nose. So I don’t know how you describe in lay terms, the face of the skull is very thin and those bones crack and pierce the dura. And then you could have a cranial leak, which can sometimes result in external collections of fluid coming out of your nose or coming out of your ear or dripping down your throats. And that’s the main difference between a cranial leak and a spinal leak because your spinal leaked fluid is contained within the body, and sometimes if you have cranial leak, the fluid can find its way outside the body. And there’s a risk for those patients that germs from the environment can find their way into the brain. There is an increased risk of meningitis for people who have cranial leaks than there is for spinal leaks. And that’s a question that we get quite a lot actually, is people saying, oh, I’ve heard they’ve got an increased risk of meningitis. And we’re like, yeah, but only if it’s cranial. So I talked about trauma, medical intervention, and then the other kind of main way of getting a leak is if you have an underlying medical condition. So that could be either you have some calcified discs that are poking into your dura and one bad day you had a sneeze or you turned funny and that pierced the dura and caused the hole, or you have something like a ehlers-danlos syndrome or another connective tissue problem where your dura is kind of by design or by definition weak, and which can lead to tears forming from, you know, things that wouldn’t cause a problem to anybody else, like a hard cough or a fall or a vomiting bug maybe, where you’ve stretched that tissue too far and it’s torn. So we find that a significant number of people who have spontaneous spinal CSF leaks either know they have an underlying connective tissue disorder or they find out along their diagnostic journey that actually that might be in the mix for them. The whole diagnosis of connective tissue disorders is fraught with its own difficulty, which kind of we don’t really cover as a charity. And I’m sure it’s outside the remit of this podcast.


Swati Raina [01:15:11] I just wanted to ask, it’s very interesting, do you know what percentage of the population sort of would have CSF leaks? Like, do you know, within the UK, if you look at, do you have that sort of statistics?


Clare [01:15:25] We don’t, unfortunately. Mostly because there is very little research in the area. So we know there’s one study that was done somewhere in America where they looked at the numbers of people presenting to an A&E department with query leak and they found that that figure was 5 per 100,000 people.


Swati Raina [01:15:47] Okay.


Clare [01:15:49] But we think that that’s actually an underestimate and that it’s not as rare as people think it is. But unfortunately, there’s been no new research done since then. So we have no real thicker statistic.


Swati Raina [01:16:02] There’s no research in the UK.


Clare [01:16:03] No, unfortunately. And that’s one of our aims to promote research in this area and very fundamental research topics like the incidence and prevalence of CSF leaks is lacking and it’s certainly lacking in the UK but also worldwide. So we’re not especially worse off than other countries. It’s a global problem.


Swati Raina [01:16:27] Okay. So if you could tell us a bit about your organisation, CSF Leak Association. It’s a charity?


Clare [01:16:35] Yeah, it is. We’re actually registered in Scotland. We were formed a couple of years ago now, so we’re still fairly young. It’s run by a group of us who are all sufferers of one type of leak or another. And it was formed out of feeling like there was a complete vacuum of knowledge, information and support in the UK a couple of years ago. We hope that we have improved that for people because we have our website which has an absolute plethora of information. But before then there wasn’t really anything around. I think there was a US site and there was certainly a US charity as well. And now, I think there is a third charity, there’s one in Canada. So things are moving very slowly in the CSF leak world, but it’s still going in the right direction. So the sort of things that you can find on our website are our aims and objectives, which are to raise the profile of CSF leaks in the medical community and in the general public. We hope to put more information and resources out there as to the causes, symptoms, diagnosis and treatment of leaks. And we do that in part by producing factsheets. We also have a medical advisory committee who help us make sure that what we’re putting out there on the website and in the public sphere is legitimate. We’re also trying our best to work with clinicians across the UK in a multidisciplinary team, because it’s not just neurologists that patients will meet along their journey. They’ll also meet neurosurgeons, pain specialists, anaesthetists. And probably some neuro radiologists as well. So we’re trying to get all of those groups on board so that we can put together a consensus statement on guidelines so that for future people with CSF leaks, if they turn up to their local hospital and they say, I think I might have a leak or somebody mentioned something about a leak. We want to get to the position where the doctor that they meet, first of all has heard of a leak which is a major hurdle in and of itself. But secondly, will be aware that hopefully in future there will be a set of guidelines which will make sure that there aren’t delays in recognising this as a possible diagnosis, getting the right imaging at the right time, and hopefully setting them on the path to get some treatment or intervention.


Swati Raina [01:19:11] Is your charity- do you have members in your charity? If somebody wants to come and join? What is the process for that?


Clare [01:19:18] We do. Yeah. Just go to our website CSFleak.info and if you want to join there’s a join page. And mostly the kind of things that you can get by joining is a membership card, obviously. We’ve also produced medical accommodation cards, which you can keep in your wallet. And if you have a CSF leak, you want to spend most of your time lying down because that’s when your symptoms are at their least intrusive. And so our medical accommodations card is just a card you can keep in your wallet that says, look, I know it’s a bit of a pain, but right now I need to lie down for my health. And it just explains what a CSF leak is. And it can kind of take some of the  embarrassment out of the fact that you’re lying down in a pub or in the street or something like that.


Swati Raina [01:20:06] That’s really helpful. As somebody who suffers with migraine, sometimes, you know, when you’re putting your head down in a restaurant because you have a headache, you do sort of feel a bit of embarrassment, don’t you? And it would be easier if you’ve got something like that in your hand to explain to the other person what exactly is happening. And it’s easy for people around you to understand that even in a situation where you are feeling unwell.


Clare [01:20:29] Definitely. Depending on how your symptoms are, sometimes you could- the same with a migraine, you could be very, very nauseous and the idea of having to have that very difficult conversation in public with a stranger while people are staring at you, can just seem really daunting. And we know that having a leak is completely life changing for most people. And the symptoms and the effects of the symptoms that can be devastating on your life. So being able to still partake in some normal life events, you know, like going to birthday parties in a restaurant or something like that with friends that you genuinely want to keep up with. But you spend most of your time at home in bed, we know that keeping up with people and maintaining those social links is really important because a lot of our members, and certainly I did when I was suffering with my leak really badly, my mental health took a complete nosedive. And actually, it is a really difficult condition to live with. And we’re aware that some of the people who’ve had this have have taken the decision to take their own lives because they simply felt like there was no hope or help available. And some people who can be left with the symptoms for years without treatment if it’s gone undiagnosed or misdiagnosed, there’s a real worry amongst our members that if you don’t get treatment, if you can’t get your life back on track, that you’re looking at a life that you you don’t want to sign up for anymore. So keeping a sense of community amongst people who have leaks is really important to us. And one of the things that we do if you join your name goes on our members register and we can put you in contact with people who have leaks, who live in the local area or even just, you know, get in contact over the phone and have a chat with someone if you can’t travel. But meeting and chatting to somebody who suffers the same as you do.


Swati Raina [01:22:30] It’s the kind of support you need, isn’t it?


Clare [01:22:34] Massive support.


Swati Raina [01:22:34] Absolutely true. You know, migraines are isolating, I think. I always feel like they’re very, very isolating, like both of these conditions. They can keep you on your bed for days, for hours. Things you want to do. You can’t see your family, you can’t see your friends. It’s so isolating. And I think that just starts impacting you. It starts to make you feel low, starts to make you feel anxious. And it’s all of those factors together, isn’t it? And that just has a huge impact on mental health.


Clare [01:23:05] Most definitely. And what I was about to say there, you know, if you say migraine, at least most people have an understanding of what that is. Whether that understanding is right or wrong is a different question. But when you say you have a CSF leak, most people just look at you like, what are you talking about, you know, gobbledegook. And so the level of understanding out there is quite low. Totally isolating. And then as well, if you’re a person who’s had a, you know, a long journey towards diagnosis, you’ll have people you know, I suppose your fairweather friends have fallen away and you might be left with a smaller group of really trusted friends and family. But it’s very difficult to be that person who says, Oh, I thought I had this, or the doctors thought I had this but it turns out that I didn’t so I tried that and that didn’t work and now I don’t know what’s wrong with me. That again, is it just another isolating factor in the mix.


Swati Raina [01:24:05] Perfect. So what I’m going to do is, for everybody who’s listening, we’re going to have the CSF Leak Association, their website is going to be there in our blurb, and I think I’m going to try and see if we can get the fact sheet as a direct link as well for those of you who want to have a look at it and read more about it. And anybody who wants to know more about it, I think it’s worth going on their website and having a chat with them, give them a call. I think they even have an online form that you can fill in with your message. Do get in touch with them. And thank you so much, Clare, this is such wonderful information and you guys are doing fantastic work, so please continue doing it. There’s more and more that needs to be done in this, I’m sure, but just continue doing what you’re doing. Thank you so much for joining us on our podcast.


Clare [01:24:53] Thank you for having me and for listening to our story and for raising awareness.


[01:25:00] 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.

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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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