In this episode, we talk to Imelda and Rebecca who both experienced headaches caused by their brain tumours. They share how these were often dismissed by GPs and not taken seriously despite also having a range of other symptoms which were all indications that something wasn't right and needed looking into.
They explain what the headaches were like and what made them think there was something more going on than just having bad headaches or migraines.
You can find more information about the signs and symptoms of brain tumours here and information on brain tumours and headaches on our website Headaches in children and Headaches in adults
If you would like to talk to a member of our support team call 0808 800 0004 or email support@thebraintumourcharity.org
In this episode, we talk to Imelda and Rebecca who both experienced headaches caused by their brain tumours. They share how these were often dismissed by GPs and not taken seriously despite also having a range of other symptoms which were all indications that something wasn't right and needed looking into.
They explain what the headaches were like and what made them think there was something more going on than just having bad headaches or migraines.
You can find more information about the signs and symptoms of brain tumours here and information on brain tumours and headaches on our website Headaches in children and Headaches in adults
If you would like to talk to a member of our support team call 0808 800 0004 or email support@thebraintumourcharity.org
Welcome to Let's talk about brain tumours, the podcast where we'll be talking to people who have been affected by brain tumour diagnosis, either their own diagnosis or the diagnosis of a loved one. We'll also be sharing news and updates from the brain tumour charity about what we're doing to halve the harm and double survival. Welcome to the podcast we're joined on this episode by Imelda and Rebeca to talk about a subject that comes up a lot in relation to brain tumours and that is headaches. Welcome to the podcast.
Rebecca:Thank you.
Imelda:Thank you. Hello.
Andy:Hello.
Sarah:I'm gonna start with you Rebecca, would you mind giving
Imelda:Sure well, first of all, hello again and thank you for
Sarah:Brilliant, thank you for sharing, Imelda do you want to us a little bit of a introduction to yourself, a having me on the podcast. My tumour was diagnosed in March of give a little bit about your journey so far. little bit about your brain tumour journey so far?
Rebecca:Yeah, sure so I'm Rebecca so I have an last year. It's just coming up to a year actually, from the astrocytoma. My tumour is a little bit special, because why diagnosis. It was a giant, they described it meningioma mid wouldn't it be so mine's kind of like a mix between a grade two frontal olfactory groove so it's kind of like right by my frontal and a grade three, we kind of caught it part way as it was trying to change but I initially got diagnosed in 2018. I had lobes, and it was removed had to be removed pretty soon really bad double vision and headaches and it was an optician afterwards, a few weeks later, they said, basically, I was who sent me to get a CT scan and then obviously from the CT scan, about to go blind, and close to dying, by the time it was found they found the tumour. So from then, all of my surgery and so they had to remove it straight away. I've had treatment has been up in London. I've got a really, really symptoms, though, for 18 years I could list them there are lots fantastic team up at UCLH and the Macmillan centre up there. So I've had craniotomies I've had radiotherapy and I've had of them but basically, headaches, memory loss started chemotherapy as well. But yeah, my main issue and symptom for I about 18 years ago, I've actually lost my memory from the think about eight months was headaches so last 18 years, so I only know that because I've looked at my doctor notes otherwise, I wouldn't have a clue. But I also was sleeping loads had hearing loss, personality change. I lost my sense of smell about 11 years ago and in the end, I was so tired, I can walk for more than about 10 minutes and I was misdiagnosed that whole time and then eventually, a neurologist said just kind of like last minute, why not do an MRI and then I got a call back saying we need another one and then he called me in and told me the news. Fortunately, I was treated by excellent surgeons at St. George's. I have three surgeons nine hour operation, and they managed to get it all out. So I'm very lucky there but I'm now dealing with all the after effects and there are a lot of unfortunately,
Sarah:Yeah, and that is the downside of successful treatment, it's not always the end of the story, is it? And you've both touched on when you were talking about your diagnosis that headaches were a big part of what you were going to the doctors with you're nodding your head there,
Rebecca:Yeah so yeah, as I said before, my main symptom was Rebecca. headaches. I had that for about eight months and then it was kind of within perhaps the last two months before I got diagnosed and that my headaches were then accompanied by other symptoms so as I said, I had really I had, I have natural double vision Anyways, my eyes are absolutely terrible so I usually wear glasses or contact lenses to correct that. But my optic nerves were so swollen from all the swelling inside my skull that I was having double vision kind of normally and it was because of that that I needed to go see an optician but I was also sleeping a lot, I didn't have any energy, I couldn't keep any food down, I think I was sleeping for like 16 to 18 hours a day, I couldn't move anywhere at all, It was really debilitating.
Andy:Were you having headaches then as well, Rebecca?
Rebecca:Yes, at the same time, and the headaches were really debilitating. I found that if there was any form of pressure in my body anywhere, it felt like my head would react to it. If I was walking with each step that I took. I would get a pulsating pain with every step that I took my head was hurting so just doing like normal like walking it was incredibly painful because I would just feel it all the time and I remember when I got diagnosed, I was so sick of the headaches that when they told me I had a tumour, I was just relieved they gave me steroids they gave me dexamethasone, I was just so happy that I didn't have a headache anymore that I didn't really process that they just told me that I had a brain tumour. I was just like, Okay, that's cool. I'm just happy that I'm not dealing with a headache right now.
Sarah:And how many times do you think you went to the doctor with headaches and stuff.
Rebecca:I mean, in the last two months, I probably had between, like, seven to 12 kind of different appointments. I'd seen so many different GPS, they kind of fogged me off with everything. I think because I was 18 when I was diagnosed I'm 23 now it's gonna sound really weird, but I just really feel like I'm getting old. You know, I feel I feel like I'm getting older. But because I was 18 when I was diagnosed, I was also taking the contraceptive pill, it was said, Oh, it's because you're taking this pill, this pill was known to cause headaches, it was to do with a family history of migraines, it was to do with everything but what now in retrospect seemed like a really obvious diagnosis. But yeah, I've been to hospitals, I've been seen at a&e and I had one GP, I actually ended up asking just to have a CT scan after everything that had happened and that he actually refused to give me one because of the risk of radiation and I'm sitting here almost five years later, after having countless CT scans, countless MRI scans and actually having had radiotherapy as well. So I think, you know, in comparison, I think the first CT scan would have saved me a lot of time and worry.
Sarah:Yeah, no, totally.
Andy:When you where you were having those headaches were they affected or treatable through paracetamol or the normal sort of headache sort of things you can take,
Rebecca:Initially initially they were I think as time progressed, and obviously, you know, the the main issue for me, I'm always having the tumour kind of in my brain, it's mine was left frontal lobe, just the sheer amount of swelling that was happening from my tumour, it became it got to the point where nothing was touching it at all. I was taking paracetamol, ibuprofen, cocodemal or anything I could find I tried probably every single migraine cure. I think at one point before diagnosis I was I can't remember what the piercing's called but there's a piercing that you can get in your ear that is meant to kind of help with migraines or something and that was just before I got diagnosed, I had said that I was going to get that done to see if that could help. I never got the piercing done anyways, but nothing was touching it at all in the last I would say let's see the last three, last three months, I would say nothing was touching it at all and I'd been I'd also been given beta blockers. I'd been given a form of antidepressant that was also used as a painkiller, and nothing was touching it at all, no matter what they threw at me.
Sarah:What about you Imelda? Is that similar because that sounds pretty horrific Rebecca to have that constant headache and nothing to be, you know, touching it at all and to be going to the doctors and thinking there's something wrong here this isn't normal this isn't. If you get a headache, you take a couple of paracetamol and they go, what was your experience of that?
Imelda:Yes, so I can see that in my notes and it sort of triggered memories. I was having 18 years of headaches and I've had countless visits, just too many to mention to GPS, but also to specialists as well so I did see, I can see that I saw a neurologist quite often, I was diagnosed with migraines, lots of times my pain is all around was all around the right side of my head, and would come on down the right side of my cheek and so I was told that I had at one point I can see sinusitis, and they said oh, every time that I got a cold I got sinusitis, and then something else called TMJ so problem with my jaw and I was told to have a soft diet and some physio, and I saw an anaesthetist and pain experts about it but nothing helped there. I've being given steroid nasal sprays for it as well so countless visits always just sort of told, I can see on these letters where it says that I've come again with debilitating headaches. So I can sort of remember constantly, certainly at work all day popping paracetamol, ibuprofen, all the time sitting in work meetings
Andy:Did they work?
Imelda:No, they didn't work at all.
Sarah:And with the headaches, were they a constant headache, or did they come and go or what made you think they were different to just a normal headache?
Imelda:They would probably come and go whereas headaches I've got now post surgery are 24/7. These would come and go, they would be worse if I was, I had quite a demanding job so if I had a lot on at work, they were perhaps worse. But I do you know, there were times where I couldn't even get out of bed they were just so so bad. Unfortunately, it never, ever crossed my mind that it was something serious that it might be a brain tumour so I never asked for an MRI. It just didn't occur to me.
Sarah:You're going all this time to having these appointments with doctors, did anybody ever kind of even think or suggest that there could be anything more serious?
Imelda:No, I don't think so. no, so certainly not none of the specialists did as I said they just said it could be all sorts of different things. At one point they said was medication I was on, I'm on medication for bipolar, which is quite possibly wrong, now, the diagnosis, the tumour was pressing on the frontal lobes, and therefore caused personality change and mood swings, because of that I had a bipolar diagnosis so it's quite likely that I'm not, but I've been on medication for that for 18 years. So at one point, they suggested cutting back on that in case that was causing was headaches and memory case that was causing problems but cutting back didn't do any good. Now, in retrospect, my dad died of a brain tumour, but it still didn't cross my mind.
Sarah:And it's still that you've got a family history of brain tumours, and even then you're going to your GP and you've got constant headaches, which is a bit of a red flag. I know, headaches are quite a common thing. But most people have headaches, like I said, you know, you take paracetamol and they go and there's a difference between you know, migraines, you know, triggers, there are certain things that happen. So even this is very different, what you both described is very different to a traditional kind of somebody who suffers with migraines. So it's quite shocking that you were going all this time, both of you have had long periods of time with seeing multiple professionals about headaches that nobody, I mean, to go that many times for just headaches on its own is a lot but then to have all these additional symptoms that people aren't putting together is quite shocking.
Imelda:I think, unfortunately, we're not viewed holistically.
Sarah:Absolutely, we get a lot of people sort of saying, I've So you see one person for one thing and another person for something else so I saw so many different specialists, and you don't even we don't see the same GP either and there's no one that looks at it and puts two and two together. Also, maybe specialists. don't lookout for tumours although you would hope that your neurologist would do got a headache could it be a brain tumour with hindsight now, because I know that it's when you're experiencing them like you said, neither of you thought of this could be a brain tumour. But when you look back at your headaches now, what was different about them? You know, if somebody was listening to this and thinking, I'm having headaches all the time, could this be a brain tumour did they feel different? What what did they feel like?
Rebecca:I think, for me, that the thing for me was how constant they were, there was no let up at all. It was like, between a scale of one to 10, it was always at least at a seven and it never faulted below that and the only time I never felt them was if I was asleep, I would wake up with a headache. I go through the rest of my day with a headache, and I'd have a headache before I went to sleep. So for me, it was just that how constant they were and the constant pain as well and when it gets to the point where nothing was starting to touch it. Like Imelda said, I never actually thought that I had a tumour the only reason that I asked for a CT scan was because my mom said to me, maybe you should ask about it but it didn't click in my mind. I don't really think it clicked for her that that's what we were like kind of alluding to.
Andy:Did you feel that there was something wrong? Just as in it just felt that this isn't right. I'm just so people who may be having headaches. If they're not considered normal headaches and the paracetamol 's work, then we don't want to panic people but it did you kind of feel that something's wrong here.
Rebecca:I definitely felt that there was something wrong, I think for me, because when the headaches become so debilitating, it just really tires you down and I think for me, I found I got to a point where I was just dealing with it. I wasn't really thinking about it. But I think for how long that I was that I was dealing with the symptoms. I definitely knew that there was something wrong. I just didn't know what it was and I just couldn't figure out what it why I was going for just through the cycles of having headaches and then being ill and then having nothing for one day, and then it would, it was kind of like a weekly cycle that I was having. But I think for how long it was going on, I knew that there was something wrong and I knew that every time that I went to a GP and was told, just start taking this pill, or stop taking this one, or use a cold pack or use a migraine pack, I did everything that I was told to do and none of it worked so I definitely knew that there was something underlying that was going on but I was so debilitated at that point that I didn't have the personal push to actually do anything because I was just so tired.
Sarah:How about you Imelda? What were yours? Like? Was there anything that kind of made you think this isn't a normal headache?
Imelda:I think for me, it doesn't sound like they were as bad as Rebecca's occasionally they were. But it was more a case of they spread out over so many years. So big, big chunk of my life so they spread out over 18 years or so and sometimes they'd be bad sometimes they'd go I mean, someone a GP I know said oh no if only gone to a&e they'd have given you a scan, an MRI. But it didn't cross my mind because it sounds silly but I always think that you go to a&e, if you're sort of about to die kind of thing if you're really, really bad.
Andy:Yeah that's true, that's what most people think
Imelda:Yeah and so to to to a&e and say I've got such a bad headache it's killing me, it's debilitating, I'm in agony just didn't cross my mind at all. So it's it's a headaches, but also in retrospect, I had so many different symptoms.
Sarah:Did you either of you, connect out those other symptoms with the headaches? Or did you were you seeing those symptoms in isolation? Because like you said,Imelda, you had lots and lots of other things, or did it just not cross your mind that they were all connected?
Imelda:I just knew I was ill and the last two years I knew I was very ill I put on lots of weight. I now know the tumour was feeding on sugar and so I was to see eating sweets, crisps, cakes and that's not what I normally eat. So I was eating that I couldn't get off the sofa was just couldn't
Sarah:That right there is such a good point. If you are just a really do anything I couldn't walk for more than 10 minutes for about two years, and I was forgetting things as well. I'd say things like, I'd love to go and see Nick Cave, my son said you did about four months ago, I couldn't find my mom's house even though she's lived there. 23 years and I go all the time. I was getting lost I had to sleep 14 hours a day and when I drove I'm embarrassed to say my head office was in Hove but I had to pull over and have asleep. It was an hour just over an hour's drive,I couldn't do the drive without sleeping. So I suppose at least I did pull over. As I said, loss of sense of smell but by the end, I was half dead I just couldn't function at all. But I was told I had long COVID by a psychiatrist and I just.. other people were saying, but who's who's he to diagnose you with thathow does he know? But I thought well, I've got to trust someone, I don't know what's wrong with me. normal regular person and you are experiencing these symptoms, you go to a doctor, you go to all these professionals and you trust, you put your trust in them because you have to that they will take this seriously. They will recognise the symptoms. If they don't can't see it, you know, reason for those symptoms that they will look into it rather than just saying, Oh, maybe it's this. Off you go. You put your trust. We all have to because
Imelda:Exactly, yeah, we do, we we're told something, they're the experts, they're the professionals don't really know where else to turn. This was someone that I've been seeing for 16 years, and knew all my history and that's what he told me. He did when I went and saw him and told I was, I had an appointment with him after my diagnosis and he did say something along the lines of I wonder how many others I've missed.
Sarah:Really?
Andy:Wow, can I just say with mine as well. I was going to see my GP about headaches before my diagnosis and we agreed between us it was early onset arthritis in my neck caused by playing rugby in school and off you go again and keep popping paracetamol.
Imelda:I know now I've been I've been told him my notes that they thought I had early onset Alzheimer's as well. That's a long list of so many things that I was diagnosed with.
Sarah:It just shows how which work there is to do. Hopefully healthcare professionals will listen to this or somebody who is experienced headaches can maybe go to their GP and say, listen to this, look at all my symptoms, and it might even trigger people to start to pay attention to some of the other symptoms and maybe connect their headaches with some of the other things that they're experiencing that, like you said you had all these other symptoms but none of you put it all together. Like I think it was you Rebecca that said, in hindsight, you can look back and see that it was a really obvious diagnosis.
Rebecca:Yeah, definitely.
Sarah:And I think you said that when we've spoken Imelda, when you look back at your notes, and you look back at that whole 18 years, it seems really obvious that now you've been told you've got a brain tumour, but actually, nobody else picked it up and it's how do we get it out there's people are putting all those pieces together, so that things don't go so long.
Andy:One of the important points there, which is really useful is is when you both felt there was something wrong. So if people are listening to this podcast, and they, and they think something is more than just normal, not normal, but headaches that are treated in a normal way, that also is a trigger, to think right are there anything else that's making me feel like something's wrong and then maybe go and talk to their GP about all those symptoms in one?
Rebecca:Yeah, I think as well I find with anybody that I speak to who's had a brain tumour, I don't want to sound rude when I say this, but I feel like I hear the same story over and over and over again and every single time I've spoken to someone they go oh I saw my GP for headaches for months before I was diagnosed and there's a really big pattern of how many people have kind of just been left to kind of sit and rot for a bit before they've actually been diagnosed. I mean, I can't imagine having all of those symptoms for 18 years, I was bad enough during those eight months. But I just I couldn't imagine going through that for so long for I mean, there are people out there who have gone through it for 18 years, and some people want it for just a couple of months. Had I been diagnosed within the first initial three months of me asking, and me complaining about the headaches I was having, I may not have had to have had such invasive surgeries, you know, I've had three surgeries and then I had to go on to have radiotherapy and then I had to go have to go on to have chemotherapy. If it was caught earlier, they could have been a good chance I wouldn't have needed such a long, prolonged treatment. I mean, my treatment lasted well over two years and then following that there was COVID as well, which obviously a lot of us would have been immunocompromised if going through treatment, or just because we had the tumour initially anyways. So it's such a long, drawn out process that could have been cut down in the space of maybe if they diagnosed me five months earlier.
Sarah:Yeah, and also the fact that the tumour is growing all of that time that it's doing more and more damage that for some people, the damage that's done during that time, like you said, because they need more evasive treatment, or the tumour has grown and damaged certain parts of the brain during that time that speed really is of the essence of diagnosing brain tumours and there are simple things that have just been missed,
Imelda:I mean for me as well, I agree with Rebecca, I do, feel so grateful that it was found that it was operated on my life was saved. But there is that knowledge that it affected my life more and more leading up to it in terms ofas I said personality changes that affected my job. It's caused so many problems in my life and now I don't remember anything, or hardly anything from the last 18 years, I've forgotten all about
Sarah:And that's heartbreaking, isn't it that like you said, my three children growing up. I've forgotten everything pretty much, except for apparently memories that attached to high emotion stay with you. But if it was found earlier, that might not have happened. So I don't know anything about their experiences at schools, about our holidays about all the little things that they did and that makes me really sad. there are no guarantees that that would have been any different had it been caught 18 years earlier. But there's a high probability that that would be a different outcome and
Andy:or likelihood it would have been better yeah.
Sarah:It's that impact, isn't it that how just people not taking these symptoms seriously, can have huge, huge ramifications on somebody's life,
Imelda:But I'm now also left and I think it seems from the support groups that I'm on through this charity, I can see so many people have problems afterwards. But I am now left with I still have memory problems sometimes get lost. I'm left with headaches, fatigue, all these problems. But I've also got high level functioning, executive functioning problems so I can't process information so can't read a book I can see you're nodding. Rebecca
Rebecca:I'm exactly the same taking my I don't have any executive functioning skills at all. I, actually recently, the last year I started university, obviously, when I got diagnosed 18 I just started, and that was pulled for me very quickly, when I got diagnosed, I've only just come back, starting last October and I had to speak to a neuro psychologist, I said, look, I'm learning all of this new information. I said, but nothing staying. I said, I don't know what's going on, I said, I feel like my short term memory is awful and when I looked at my long term memory, like you said, before, anything that I remembered, was related to a high emotional state, that's the only thing stuck with me and I said, I can't get myself in a high emotional state for every single lecture or seminar that I go to, I can't do that. So I do have issues struggling with my emotions and part of that is because of my executive functioning. So it's really difficult but I've been quite lucky that my university I go to the University of Essex, I've been very lucky that they have been such great help with that. But yeah, I remember just speaking to my neuropsychologist, and he said, Look, this is a really common issue that we find with people who have had a brain injury or a tumour. So my university have been really helpful with any extra support that I've needed. So I have a lot of support, I have a disability advisor as well so if there's any issues I'm having, at all, I'm able to talk to them but it it's slightly frustrating for me because I feel like I shouldn't need it being 23. I know earlier, I said I felt like I'm getting old because I was 18 when I was diagnosed but I think there's a frustration as well especially like for Imelda, for example, who can't remember the last 18 years of her life, I feel like my kind of young adulthood was taken away from me. And that's another thing that you have to deal with and it's a really multifaceted thing, because, you know, you start off talking about headaches, and then it just links to so much like everything else as well and it's yeah, it's difficult but you know, I'm happy that I'm back at uni.
Sarah:I know well done.
Imelda:yeah well done that's brilliant that you've gone back
Sarah:I think Imelda, you touched on it have your headaches now you've had treatment, the tumours out cos I think a lot of the assumption quite often is you've been treated, you had a tumour removed, everything's fine.
Andy:Off you go you're okay, you're cured yeah.
Sarah:Yeah, it's not fine but in terms of headaches, did your headaches go when you had your brain tumour treated? Or is that still something that's an issue that you have to deal with?
Imelda:So for me, headaches are a huge problem. I have them 24/7 and it's worse than it was before, it's just constant, it's like. So first of all, my forehead was sort of rock hard solid and I think that's partly because I had a very large bone flap. I was cut from ear to ear and the skull was cut off right down, sort of halfway along my head right down to just above my eyes and all that place was just solid, you can touch it and tap and I didn't know what was going on why it was like that. slowly over time that's different, I can feel it, but it still feels hard. But the pain is like a band that goes right across the top of my head, a really tight band and then it goes across my forehead, and then it's all down the right side of my head. I can feel all the screws, all the plates they hurt if I touch them or hurt anyway and then the headache is along the top of my head.
Andy:Is there anything you do to try and relieve the symptoms or the effects of the headache Imelda?
Imelda:Yes, so I wear usually wear hats all the time. They help maybe because they're a bit tight around it. I even wear them to bed quite often. I've got a hat with, it's a fleece hat where you put frozen things, sort of frozen packs in it and I wear that for about 10 minutes and that can help as well as it kind of like numbs it and it gives a bit of relief. The support group helps through the charity just sort of talking to other people knowing that they've got it. Drinking lots of water that helps us well. A big thing I do is distract myself so I'm always out seeing friends, always doing something but then yeah, or exercising as well and I've got involved in charity volunteering as a photographer, campaigner and an ambassador
Andy:And podcaster
Imelda:Yeah and a podcaster so they all keep me really busy which is brilliant because when I'm distracted, I don't think about my headaches. But downside is it's a bit like a vicious circle, because then I get fatigued, and I get tired, because I can't cope with talking for too long or doing too many things so it's a bit of a balancing act but I don't want to just sit down and mope about thinking I've got headache I want to try and live my life so I go out and do things.
Andy:How do you explain that to your loved ones and your family? Is there a way you can sort of try and get that across to people who haven't experienced that?
Imelda:I do rate out of ten, that helps a little bit. Generally, I don't really say very much, because I think it gets a bit boring. So I don't tend to say that I've got headaches all the time. It's, it's gone on now for 10 months, consistently. If I'm saying all the time, I've got a headache, then no one's to hear that.
Sarah:have you've been prescribed medication for?
Imelda:Well, originally, I was told dehydrocodeine, no one told me unfortunately, to only take it for 10 days so I took it for four months and in the end, I was falling all over the place addicted to it and burning myself and the headaches were still bad. I was advised to double it, which I did think not good idea and eventually the GP said, stop now that's going to make the headache worse. So I stopped it and then just took it occasionally Ive tried gabapentin, pregabalin but and it was left to me to to decide which one I wanted. But I was very reluctant to take them because of the bipolar and I'm quite sensitive to medication, I was worried about mood swings, especially as I've got brain damage as well to the frontal cortex, which could cause mood swings and problems anyway. But eventually, I took amatripylin because I was desperate and that caused me to feel out of control, sort of mood swings, I just felt really, really awful so I stopped that and then a few weeks ago, I started gabapentin, but that's not working, and it's taken away my energy so I haven't got the energy to go to the gym or do any of the things that stop the headaches
Sarah:It's a vicious circle and that's the thing about medication is that medication has lots of different side effects, finding one that can treat the thing you want to without triggering unwanted side effects elsewhere.
Imelda:Yeah, it's making me tired and I think it's also affecting me emotionally, as well and the packet either for that or the other one says don't take if you've got bipolar, but I was so desperate I thought I'll try it but it's not really working it seems like it's just something to put up with I suppose.
Andy:Where are you finding all this information out you sound like, you know, obviously got experience of a lot of different medication is that you finding out about the medication or is that through your neurosurgeon team or through your GP or a combination of all those?
Imelda:It's a combination, the neurosurgeon said amitriptyline, but then he did say and fair enough, I understand. He said that's not his area, medication, he basically takes out tumours and he saved my life, so amitriptyline and then your neurologist, but it was a very quick phone assessment phone call. So I didn't see him and in retrospect, it's very hard to describe complex headaches and different parts of your head over the phone, you tend to sort of point to the areas and things like that so he said Gabapentin and pregabalin but he said, go and google it and see what you think and then a psychiatrist recently said, because I'm on mood stabilisers that it shouldn't be okay in terms of my mood and so that's when I started taking it. But as I said, they don't seem to really be working and they seem to be affecting me as well so I'm considering stopping.
Sarah:And how about you, Rebecca?
Rebecca:So I think for me, following treatment, my headaches have subsided, I do still have days where I get one. But I think for mine, I have specific triggers. I think probably one of the most annoying triggers for me is that I can't nap during the day anymore and I love sleeping so not being able to nap during the day, especially when you have fatigue as well is really difficult. So I find that if I do have a nap during the day, I will have a headache for the rest of the day. irregardless of what time I wake up so say I woke after eight o'clock, if I thought I'm going to go back to sleep for another half an hour, I know that I'll be setting myself up for the rest of the day. Other triggers that I have as well are strong smells, which makes me really difficult to buy for Christmas now, because no one can buy me lovely candles and perfumes and things. So if if I smell something that's really strong, so you know like those oil diffusers, I find they're really terrible for me. So if there's a really strong scent in the room, instant headache, it will trigger that off and I have to take myself out of that situation so I don't have to smell it. So yeah, I find that I think I also found that after I'd had treatment, and while I was going through it, I had really awful health anxiety. So I found that what I was doing was I was looking for headaches. So I'd kind of sit still and then kind of go do I have a headache right now and then I would have one. So I was in therapy for my health anxiety for a good six to eight months, I went through about three different ones as well so you know, it was a really long drawn out process. But I found that as annoying as it is when some people say about brain tumours that it's in your head, I think for me post treatment, there was definitely a psychological aspect to it because I'd fixate on feeling pain, because I was so anxious about you know, if I had a headache, I kind of spiral. I'd be like, Oh my god, like the tumours come back and we'd have to go through treatment again. I'm gonna have to do it all again.
Andy:That chimes with Imelda saying distracting herself is a way of trying to alleviate the headaches, I guess.
Rebecca:Yeah, so that was a that was a big thing that was told to me during my therapy for that as well was that you need to start putting distractions in place, which is what I try and do. So I do try and stay as active as possible. I find for me swimming is a really good one because swimming just kind of alleviates all pain when you're in the water because it takes up any pain that you're feeling in your body at all. So I do swimming. I do that twice a week. So yeah, so I find that if I'm having a really bad headache day, I usually say to my family, I'm having a headache headache. It's kind of like when Micky Flanigan says you're not going out you're going out out if I have a headache, headache, you know, it's serious. And I find that I have to go to bed early, which sounds weird because napping gives me headaches but actually sleeping for a prolonged period of time, as in overnight usually actually helps and also medication as well so I can now take paracetamol and ibuprofen, I find for me, I don't know if it's also just a female thing for going as long as humanely possible without taking medication, I find that I do that a lot in any kind of situation that I'm in. I
Andy:Can I just say that don't think for me because I'm the same I just like I rate mine sort of one to 10 where 10 is, you know, and one is like it's kind of in the background. And if it's like a two or three, then my wife and my family know, it's okay, but I don't like using paracetamol or ibuprofen because I feel while, I've got a bit of a headache and I've got something else I can take. I'm more relaxed. Once I've taken paracetamol, ibuprofen, I'm thinking I can't do anything else now and that almost can add to the anxiety ao I'm, I'm with you on that one.
Rebecca:Yeah, I usually go as long as I can, without taking that I'm at a point where I'm lucky enough that I can now take a paracetamol and ibuprofen that will help me out. Whereas obviously before it wouldn't have done anything at all. So it's quite lucky that I haven't I don't have to deal with those 24/7 headaches anymore. But it doesn't mean that they're not still debilitating when I do get them it usually does wipe me out for the day, and I haven't really got the energy to deal with anything kind of thing.
Imelda:For me, the triggers are if I get I say fatigue, because it's different to tired people say they're tired. yeah, Rebecca you're nodding,, people say that tired, fatigue is like your brain is just overwhelmed, overloaded. It's like a computer and it just shuts down, can't cope anymore and so my headache will get worse and worse. But at the same time, as I said, I don't want to just think oh I'm recovering still and do nothing so I push myself, I get the train to London, get the tube, get buses go out, take photographs, but then there's often a price to pay with headaches. So if I'm concentrating a lot, if I talk too much, if I'm in difficult situations, like I said, going up to London or something, if I'm with lots of people, or if I do too much, if the weather's cold, that can make it worse. And then the other thing is when I do get tired, I also I've got slight facial myalgia, my eye hurts, and that can make my headache worse as well on that side. My right eye gets really sore and in terms of what it's like living with it, it's draining effects, my moods sometimes, I get quite weary. It causes psychological problems and then the other thing is as Rebecca said the anxiety I've had, I've been very anxious a couple of times and in the early days, I went to a&e at St. George's in London, because that's what 111 said, they're the experts there aren't any neurology experts or surgeons experts where I live and then, probably about six weeks ago, I went again, because the GP I phoned the GP, I couldn't get out of bed it was so bad and she said she wanted to call an ambulance. I thought she'd done that 10 years ago. But I said, No, and I got a cab, and I had a scan, which was they said it was brain fluid leak, which was very worrying. But it turns out, it wasn't. But I had the reassurance that it wasn't re-growing, which I thought it might be and things were okay. But I suppose that's all obviously a costs to the NHS, as well, unfortunately, whereas, yeah, I dunno if I could get a bit of help with the headaches I wouldn't have needed to do that
Sarah:Absolutely, yeah. It's a fair point, isn't it? Because they do affect you and if you've had a brain tumour, and you've had headaches, people haven't taken seriously, then when you get a headache, now it's natural that the immediate thought is, oh, it's my tumour grown is something happened is something wrong and that anxiety must be huge
Andy:And sorry for stressing you both out by doing this podcast, by the way, because honestly, I always sleep very well after doing the podcast so I'm sure you guys will hopefully sleep well tonight rather than getting too, too stressed out and headache.
Imelda:Probably yeah.
Sarah:And as we come into the end, just you know, do you have any last words for if somebody is listening, and they were either, you know, having headaches and their feeling that doctors aren't paying a paying attention to them, or they're having headaches post treatment,
Imelda:I would say, certainly if it's pre diagnosis, please, please, please push to get it checked, especially if you've got any other symptoms don't get fobbed off being told it's different things. That's why I think the campaigns that this charity are doing absolutely brilliant for earlier diagnosis, for awareness, because there just isn't enough awareness at the moment. So hopefully, anyone listening to this, will, know that it's a massive it's a big symptom for tumours, and for themselves or anyone they know that is suffering with constant headaches, always taking medication for it, paracetomal to pursue it and get it looked at and even if it's looked at by a neurologists, and they fob them off, just push for a scan that's my last bit of advice I think
Sarah:it's wise, it's wise advice, isn't it? Because I think people trivialise headaches and you know, it's just a headache. But actually, if it's going on and on and on, you don't want something like a brain tumour to go on for months and months or years and years. The sooner you get that identified for what it is, then the sooner you can have treatment, the less impact it's going to have, hopefully.
Imelda:Yeah.
Andy:What about yourself Rebecca,
Imelda:I definitely think I 100% agree with everything that Imelda said and the thing is, I understand how difficult it is when you're in the throes of having symptoms but to try and be more aware and proactive and like you said, push it's difficult, who've tried to talk about when you know it's different. There's just this internal feeling that you have, even if you can't physically explain it and if you have that internal feeling, please just push to have a CT scan, or just to have a scan just so you can be looked at because one scan earlier on during your symptoms could save you a year and a half, two years of treatment, perhaps I think, yeah, definitely just being more holistic in your symptoms, looking at them holistically as well. So if you're having headaches along with any issues with your eyes, if you're noticing or your family, notice any personality changes, big drops in energy levels, if you're like me, who was consistently nauseous all the time, and you're definitely not pregnant. But I that was one thing that was said to me all the time and I definitely wasn't. But yeah, just look at your symptoms holistically and push those when you go to see your GP because obviously, when you see your GP you talk about one thing at a time, just say, look, if I saw you for all of these symptoms separately, you'd see me about 17 times in one week. So just kind of just say, Look, these are all the symptoms that I'm having. We need to do something about this and I know it's difficult when you do feel so debilitated by headaches and things. But even if that is the case, have someone come with you and and try and be that push or voice for you because it can be difficult because you're in a vulnerable state so
Sarah:That's such good advice from both of you. Thank you so much for coming on and talking about this because the big one because it's something that many, many people are going through, you know and being fobbed off for want of a better word by their doctors by anybody they talk to because it's just a headache it's a migraine, it's this, it's that, actually, that can be really invalidating for somebody who's saying this is really impacting my life.
Andy:Cheers, guys, thanks for coming on. It's been really, really interesting and really useful, I think for anyone listening to this so well done
Imelda:I hope so it's a pleasure thanks for you very much.
Rebecca:Yeah thank you for listening.
Sarah:We hope you've enjoyed today's episode. Don't forget to subscribe to the podcast so you'll never miss an episode. If you'd like more information, you can visit our website at thebraintumourcharity.org or email our support team at support@thebraintumourcharity.org And finally, before you go, if you enjoyed this podcast, please can you leave us a review on iTunes wherever you get your podcasts so we can reach more people and raise more awareness