Ep. 4 - Sudden hearing loss in pregnancy - Share Your Story

Jaimee shares her very personal experience with profound hearing loss suddenly hitting at 36 weeks pregnant. She discusses the events of when & how this occurred, going into detail about the emotional & physical journey, including a possible link with T1D. She talks about her experiences with various healthcare professionals, & the power of a few words to give comfort & hope at a time in need. This is a personal experience & is by no means medical advice. Please always check with your healthcare team for any concerns regarding your own health, or a loved one's health.   

Transcript

audioJaimeePaniora11675503055 0:16

I thought I'd, um, jump on today while I have some time. Um, my, my boys are asleep and just have a little bit of a chat about what's been going on with me, which sounds a bit uh self-centered but I think it could be interesting to very few people out there, but I think if it can save someone what I've gone through and potentially help. Uh, identify whether, you know, you're going through something similar or, um, whether it's just of interest to anyone, to be honest. Um, so long story as short as I can. And hopefully don't bore you I've recently had a baby as you may or may not know if you've listened to a few of our other podcasts. He's often grunting in the background. Um, and at 36 weeks I suddenly lost my hearing in my right ear. So. A bit of background on how that happened. I was sitting on a spin bike at home. Yes. 36 weeks pregnant sitting on a spin bike. And it was to get my glucose level down a little bit, to be honest. So not always safe to exercise, um, to bring your level down, but sometimes it can be sensible and I was going very gently and I had my little, um, EarPods in which, you know, just to play a little bit of music while I sat on the spin bike. And I was only on there for 20 minutes. So I barely got up a sweat or anything. And I got off the bike after that time. And I thought, oh, my hearing feels a little bit fuzzy. Um, and I guess I didn't think too much of it, but it was, was if it was funny aura that I sort of felt, if that makes sense, it's a bit hard to describe, um, what I felt and even going, how it feels. So I carried on as you do. And the next day I woke up and. Yeah. Couldn't hear anything in that ear really. Um, and I can't remember what day it was that the tinnitus and the vertigo symptoms came on. So for three days after that, I had severe nausea, vomiting, hypos, you know, low blood glucose levels galore, um, being heavily pregnant with those symptoms was awful. So I did try and get into the GP. But couldn't. And just with a bit of background in nursing, and I did work in emergency for less than two years, but, you know, had a, had a bit of experience there. I did. Sort of have a feeling that it was a bit of a medical emergency, sudden hearing loss. So I also Googled it as we do these days, Dr. Google and I saw that there was potentially a link with sudden hearing loss and diabetes. And I don't even think it mentioned whether it was type one type two, you know, anything like that. But I thought, you know what? This is severe enough for me. Um, hearing wise as well. All the other symptoms with the nausea of vomiting, vertigo was horrific. So as soon as I set up outta bed or anything, I'd literally have to run to the bathroom and throw up, um, not to mention that spinning feeling. I'm sure some of our listeners have experienced that, and I have a new empathy for you and for anyone with any loss of sensory of any kind of, of course, I'm not going to even try and compare, you know, this to a visual loss or anything. Here in Las in one year has had more of an impact than I ever could have imagined as does verti goes. So, um, as always, I try and treat it as a bit of a, you know, something life's thrown at me to gain more understanding and more empathy for other people. And it certainly has as the, as this sort of continues. So going back, I couldn't get into the GP. So I went to. A minor injury in illness clinic, which is, you know, it's a, it's a Monday to Friday service, I think, um, in my town. But it's, it's sort of an emergency type clinic. If you like for when you can't get into the GP or, you know, they do minor sprains and fractures and things like that. So went and sat there for three and a half. Heavily pregnant feeling horrible. And I waited that long because I was concerned. I genuinely had some concerns about what was going on. Eventually I got in and I saw a lovely doctor who had a look in my ear and said, it looked a bit red and prescribed me some eardrops ear drops. So that was all of about a 10 minute consult, which was fine and went away with some ear drops. After three more days, nothing had improved, except I say nothing. The nausea and vomiting had eased. Um, but I did go back because things were still not good. So I went back to not my GP, but another GP trying to do the right thing and avoid the emergency rooms and everything like we're advised to do where possible. Um, if it's not necessary, of course you absolutely go. If it is, and me not being quite sure. I just went to the GP and I got some stronger steroid eardrops and I got some oral antibiotics because again, they said there was some redness. Um, now of course there was no other signs of infection. Well, not of course, but you know, the doctors. Did the once over. And I also told them there was no pain in the ear as such. It was just all the vertigo symptoms and everything else that went with it. Um, and I just wasn't coping with the diabetes in the pregnancy in general. Also had a three year old to look after my husband was at work, you know, this whole week and yeah, just wasn't coping. So by this time I was in tears in the, in the doctor's room, but the doctor didn't know me. You know, it's always interesting. Did have both female doctors, which for me is always a bit of a comfort, but, and hope they understand a little bit more. Um, so continued on the new eardrops that cost$40. Mind you. I won't forget that. And, and the antibiotics and. The, the nausea, vomiting, all that stopped, which is why I was able to function and just get on with it. And basically just didn't have any hearing in that right ear. So went in for my plants, Asar section as organized on the 21st of April and had my baby. Um, and then it was the endocrine team that came around. Two days after the birth, when we were going home just to do a bit of a review. And I asked them to have a look in my ear. I said, can you do anything it's functionally? I can't hear like all through the Cesar. Everyone had to be on my left hand side or my husband had to repeat everything. And it sounds, you know, pretty minimal. But if I'm honest, I went through similar things to what. The social workers describe for a new diagnosis of diabetes in hospitals. So for the children with type one, the social workers go around to the families and they go through, you know, the, the stages of grieving basically, which can be anything in life. But it was just interesting that I. I did go through that, um, with this hearing loss, because I don't know whether I'm playing it down in my head or what the listeners are hearing here, what you guys are hearing and the people around me, but it was a huge deal for me, functionally on a day to day basis. Um, It, it just changed my life. So I did feel like, you know, there, there was a loss and there was a, a why me, um, I guess on top of the diabetes, it was a little bit of a kick in the guts. And I thought, you know, haven't I got enough to deal with, but you can't do poor me. I'd be lying if I said I didn't. And it didn't last long, cuz that doesn't help. and I've been around it enough to know that you can't just dwell on things. So the endocrine team very kindly had a look and there happened to be one doctor that had heard of this. Sudden sensory neural hearing loss in third trimester of women with type one diabetes. I think she'd seen about four cases before. So she immediately organized a hearing test for me at the hospital, with the audiology team and went down and for about 40, 45 minutes, I had a hearing. Which came back as profound hearing loss. So basically had nothing in that ear, which subjectively I could have told you, because as I said, I couldn't hear anything. If anyone was on that side and then basically went back up and the doctor said, well, we need to start oral steroids. And as I had read when I doctor Googled, but also with that nursing background, The sooner you start treatment, the better possible outcome there is. So I, um, I sort of sat in hospital and yes, I was very emotional when, when. I sort of got the results and everything, but I don't think I fully understood what it potentially meant. I do remember the doctor kneeling down at the bed and, and explaining this is what we think it is. And I did think at the time she's getting down to tell me something serious here, because I feel like that's the body language and the empathy you would use. If you were telling someone there's pretty severe. You know, issue and whether or not that was just her beautiful manner or whether that was, you know, it was in relation to the severity of the hearing loss or the potential prognosis. I don't know, but the doctor ordered steroids now, hours later, I still hadn't had them. For whatever reason. The ward must have been busy. I wasn't a maternity ward. It's not like I was on a medical ward where. I guess on top of all the acute things, um, outside of pregnancy. So, but the doctor, when she heard that I hadn't had the steroids was really, really frustrated and annoyed because timing is off the essence and we'd already missed. Two and a bit weeks opportunity to get those steroid started. And that's why I went back to the GP the second time, because I thought time was an important factor here. So I think a huge part of my, um, grief was around. Why did they miss this? Why could I see it on Google, but you didn't know. And that, and I've since sort of found out that the doctors, you know, probably did what 99% of doctors would've done because in 99% of cases, it would've been a, an ear infection that responded to the treatment they gave me or an inflammation. And it wasn't and we missed out and I've built my bridge on that. Um, so then we eventually got the aural steroids and I went home that night. So two nights after having my baby, um, still very emotional for obvious reasons, just had a baby hormonal as anything, but. I think regardless of that, this still would've had a huge impact on me. And I don't think anyone around you who can fully understand, which is a lot like diabetes, because you can't see it. And Haley mentioned in our last podcast about how that can be quite difficult when you are at an airport or when you're dealing with people that don't understand. Which if I'm completely honest is probably anyone that doesn't live with someone that has diabetes. Type one diabetes or a child with type one or something. So again, I'm dealing with this thing that no one can see, but it has a huge impact on me. So, um, I've lost my train of thought a bit and blabbering on. I do apologize. So I'm just trying to make sure I go through the timeframe. So I go home I'm on my oral steroids. So if anyone knows anything about type one, diabetes and steroids or any diabetes and steroids, it causes further insulin resistance. So I've just had a baby, all my insulin, um, pump settings have. Change I'm breastfeeding, which can cause lows when you're feeding. Obviously it's changing things. And now I'm on oral steroids, which causes insulin resistance. So I had phone calls every day from the end endocrine team, keeping in mind, I am a diabetes educator and. That's the only reason I was actually able to come home and not stay in hospital for another couple of nights, if not a week on these steroids, because it actually plays have equity, glucose levels, but I was able to have a phone call with the endocrine team every day and adjust my pump settings and do what they. Recommended, which was amazing. I was very, very fortunate to have those guys calling me every day and allowing me to go home rather than staying in hospital with my baby. Um, and actually it wasn't too bad. The doctors did an amazing job. And between us, we managed my levels really, really, really well. So I was very fortunate. Um, so we basically started on a high dose and gradually dropped and we were, I was on steroids for about 10 days. I think it was. Um, and then I had to. Go and see the E N T team, which is the Enos and throat guys. And I think we're now about a two weeks after possibly I'm losing my dates a little bit, so went and saw them. It was the five minute consult, maybe 10. Um, and they basically just said this, these are the next steps, which would be, um, Steroid injections into the inner ear. So they put a hole through your eardrum and inject steroids to get more locally to the, into the inner ear, which is where the problem is in the cochlear, which I've since found out. But I hadn't had a repeat hearing test prior to that visit. So then I had to go back and have another hearing test and see the E N T guys again. Now at that visit, I asked the doctor if time was still. An important factor with treatment to which I believe he said no. Um, and because I have a newborn baby and no family and no one to care for the baby, I had to push out my appointment. A couple of weeks, which it turned out to be a month, I think, um, purely due to hospital availability of appointments and me not having a carer for my baby the week after, which is when the appointment was made. The one day I said, I can't attend that's when it was made. And then I couldn't get in for another month. So that's, that's what we deal with in the public health system. And I, I can't complain about that, but I can complain about the doctor telling me that time. Wasn't an important factor here because. It was. And again, I went through that. Why, why have we pushed treatment out? And we've missed another window of opportunity to improve things even more. Um, but I didn't even know that till this week. So that's okay. The last month there's just been dealing with pain in the ear. And when I say pain, it's not pain. As in pain, physically it's pain. Due to noise sensitivity. So one of the worst things is taking my little boy to swim lessons in a enclosed environment with kids, screaming, teachers, yelling, water, splashing, it's horrible. I come out with a headache. I've just got this, um, crazy sensitivity to noisy environments. I'm sure some people can relate if they've had any ear problems. Um, and if there's any background noise at all, like a microwave or a kettle going or something, I cannot hear a thing in, you know, if someone's talking to me on that right side, um, I could go on and about the daily impact. And it's also the ear that I talk with on the phone, which doesn't sound important. Only a lot of my job at work was phone consults during COVID. So it, you know, has a huge impact. And if, if you go away after this and have a answer, the next phone call on your, your non-dominant ear or the one you don't normally use, have a have a go it's very, very weird. I've. Pretty much started answering on my left, but it's taken me a couple of months to get there.

audioJaimeePaniora22675503055 16:43

Of course, my little boy's just working up the baby. So if you hear some granting, that's what it is. Um, I think I was at. Having been to the EMT the first time. So a month after that, I went back, which was just this Wednesday and had a repeat hearing test, which, you know, went for about 40, 45 minutes. Again, it's very, very thorough with an audiologist at the hospital. And then I went that afternoon to see the E N T doctors again. And it was a different E N T doctor this time. Um, And after she sort. Talked through the whole scenario. Again, went through the history. She then proceeded to tell me that it was probably too late to have the steroid into injection into the ear, which I'd been told was the next line of treatment, um, followed by a hyperbaric chamber at a hospital in Brisbane. Um, is the, is the next treatment option? I believe so. Oh, yeah. I was pretty disappointed in that because as I mentioned, the doctor had told me time wasn't important in terms of follow up treatment. So when you know anything beyond six weeks or even eight weeks since the year issue started is generally when the treatment is best and the sooner the better. And I had read some research on it and it's all very airy fairy there's, it's sort of hit and misses to what works and it's, it's just, this is the best treatment that they have. And it works in about a third of people or something like that. So, you know, there's not a lot of statistics. There's not a lot of evidence to suggest anything definitely works or doesn't, but this is the best treatment, the oral steroids, and then the injections to get it more locally into the. so she went away and spoke to her senior, who obviously said, get it done, get the treatment, um, started today. So I went straight into the treatment room and, you know, had this injection into the inner inner ear. So they basically put some local anesthetic in, put a little hole through the eardrum so that they can then inject the steroids into the, in a ear. So you sit there with your not allowed to talk swallow. To do anything for 20 minutes, which sounds easy, but, um, it's actually not easy not to swallow for 20 minutes straight. So, and of course I hadn't even planned that, but luckily my glucose levels were fine and I'm on control IQ where the pump adjusts the insulin and I have a sense or everything, but I hadn't even thought of that either. I was like, yes, let's get this treatment done. The treatment itself is pretty horrible. If I'm honest, um, getting a whole. With a needle, three eardrum is not pleasant. And then having fluid injected into the inner ear causes horrific vertigo. The room was completely spinning. I actually felt like I was on a merry-go-round anyway, this is the things we do. Isn't it. So. That was Wednesday. Now I need another injection every week for four weeks. Um, and I'm sort of winging it and hoping that someone can look after baby. If my husband can't get off work and I've managed to organize a beautiful lady this, this week to mind him for an hour, um, he'll be going where my other little boy goes, which is very lucky, but it's just, um, in this time I've got a very good friend who lives in New Zealand. Um, I'm friends with both the husband and the wife, and they are both got background in, in medicine, in healthcare. So I flicked off a message and the lovely wife, who specializes in unilateral hearing loss. I did know she worked in here in loss, but I did not know that she specialized in this area. She did send me a whole lot of information prior to me going and getting the, the treatment and seeing the T the second time. so I was quite aware that potentially nothing would work. Um, and I'd started looking into. Some hearing aids and or other devices that might be suitable. I was told that a hearing aid wouldn't be useful because there wasn't enough hearing to amplify, which makes sense. If you've got nothing. To amplify it, then amplify is not gonna make any difference. The good news is when I had the hearing test on Wednesday, my hearing loss has gone from profound to moderate, mild to moderate. So it's significantly. Well, whether it's significant or not, it's significant for me. Did I know that it had improved potentially. I, I sort of was in the car and some, my husband had someone on speakerphone and I actually heard something. He didn't, which it sounds silly that I didn't know, but. I think when something gradually improves or gradually comes on, you don't recognize it as much. and I also still had that horrible sensitivity and pain to noise. So potentially that's even worsened because the hearing's improved. If that makes sense. If I now listen to a phone call on my right ear, it's it feels like something is vibrating in my ear and it's actually quite painful. And when the audiologist did the test, without me knowing she. Well, I did know she was doing different volumes. She did lots and lots of different tests, but when she amplified it, it actually just made me cringe with pain to have the louder sound or the louder speaking voice. so at the end of all, that she sort of said, well, hearing aid is not going to be useful, even though there's now enough sound to amplify, it doesn't help you articulate what the words are. And it doesn't, Doesn't help you functionally. So that was a bit of a positive and then a negative on top of it. and it's not that I'm not excited that I've got a lot of hearing back. It's just. Day to day quality of life. The sensitivity slash pain is the worst part about this. It's not been able to tolerate my little boy, pushing his cars around on the tiled floor and be getting, becoming very frustrated and sore and headaches because of it. Um, No one wants to be a grumpy mom. And then I always say now with my hearing sensitivity and then at a hypo, I'm like the devil mother So it's just, it's just not a fair thing for my little boy to have to deal with on a day to day. And it's certainly not pleasant for me and probably not pleasant for my husband either who is very tolerant of me with all of this going on and very helpful. Again, there is still that lack of understanding because this is not visible and everyone just forgets it's there, which is fine. I completely understand that. Um, and it's also that whole scenario of, well it's two months ago or more now. my little boy's two months tomorrow, so this is over two and a half months since the hearing loss. It's just not something everyone. Going to understand it is continuous for me at the moment. Um, but it is improving and I hold hope that maybe these steroid injections will help. One of my biggest reasons for blabbering on and talking about this is the experience with the healthcare professionals. And that's a massive reason that I've wanted to sort of start doing some private work if you like, is because I feel like with diabetes, It's all about whether or not you gel with someone in the team, if not their whole team, as to whether you feel you can be open, if you feel like you can contact them when you need to, whether you can say what you wanna say, and it's just having that empathy and understanding. So to have my very good friends in New Zealand, Understand that the sensitivity and the day to day quality of life stuff is as important as the hearing itself was huge for me. I actually burst into tears when I read her emails and I'm saying her because I don't know that she wants to be named, she's, she's a beautiful person and very, very, um, what's the word? Down to earth and wouldn't want praise for something I can't imagine, but I just haven't asked permission to talk about her. So I won't mention her name, but she was just beautiful in her emails and both times she's she said it will be okay. And that can, those few words Can make a big difference when you're going through something. And I know with diabetes, it's something that is there constantly. And I think sometimes you feel like you should be able to deal with it because you're not new at it. Um, or because you have to deal with it day to day. I don't know. It's just. It just made me realize again, how important that acknowledgement is of what's going on for you at the time, what your worries are for the future, how it's impacting day to day on your quality of life. That's huge for me. Um, and I've always had that focus in healthcare. When I've worked as an exercise physiologist. I always wanted it to be client centered goals and that's huge in healthcare over the past 10 years or more, but it's something that I've just always tried to focus on for anyone I'm working with or listening to is how something impacts on them or what their goals. For them in their day to day life, whether it's hanging out with their grandkids, um, or whether it's running a marathon, walking upstairs is as important for someone who can't do it as it is for some athlete who wants to run a marathon, you know, I'm not going to be the one to decide what's important. And for me just to have someone understand and actually give me hope that there is hearing aids out there, because I had asked if I can potentially play some background white noise in my right ear when I'm in a noisy environment, it's at the point where. I dunno if I can take my boy, my boy to swim lessons every week to deal with the, the noise at the time, but also the aftermath with the headaches and stuff. And then the grumpiness that comes with that. and then even just things like going out for dinner, I've only been out. in a social situation once since this, and it was horrible. I sat in the back stores, luckily breastfeeding, and I had someone talking to me on my right side and I couldn't couldn't hold a conversation. I had to ask my husband to either repeat something or he just knew to jump into the conversation for me. it's just something I don't wanna have to deal with. It will stop me. Wanting to go out socially and diabetes can already do that. I think it doesn't for everyone, but I am someone that looks at the menu prior to going to make sure that there's something I'm gonna be comfortable with. And if there's not, and I can get a bit anxious about going. There's the whole pulling your pump out in public. And that's, that's way more understood these days wearing sensors and pumps. It's less, less novel, I guess. And people don't stop and stare as much. and there goes my pump. Perfect timing, and I just didn't want something else to deal with. And I sound, I guess, a bit pathetic with it all, but as I said, I'm just more jumping on. Um, so that I can share a bit of my experience as a patient and a healthcare professional. And I hope that that helps me be better at my job when I'm helping others. whether that's women in pregnancy with diabetes or that's children and families live in with type one, or that's someone who's just been diagnosed with type two, that's a huge area that. Underestimated the impact of a diagnosis. Often the GP will just tell someone they've got diabetes and this is, this is it. This is what they need to do. Go away. Change your diet, lose weight, start exercising. And that's it. It's just not given enough, sensitivity, a diagnosis of gestational diabetes, even when I have to call someone and tell them. I feel really horrible. I can't be there face to face with these last few years with COVID, but also, you know, just give them that extra time and effort or not effort, extra time and sensitivity that they need around that because it's. It's a sudden diagnosis. It might be short lived, but it has a big impact on their day to day life during pregnancy. And there can be a lot of guilt in that that comes with it. So I guess I just wanted to share a little bit about that. Um, one in hope that if anyone else with type one and pregnancy ever gets a sudden hearing loss, that they will get treatment urgently. in case it is this and it may not be, it isn't overly common. I believe don't quote me on that, but I, you know, I think if a couple of doctors missed it, it can't be that common. I think I was just very lucky that the endocrine doctor had seen this in a couple of other women with type one. Now, is it autoimmune related? Is it diabetes related? We haven't confirmed that. Apparently I can go and get tests, but I'm being, um, offloaded. You know, the GP for that. And I don't know that a GP is gonna know what antibodies to look for and what blood tests to do. It is something I will pursue down the track, cuz I am interested to see if it is an autoimmune thing that's kicked off this hearing loss. It can be. Definitely linked with type one, or it may be completely external to that. but my feeling is if there's been other cases in third trimester pregnancy in women with type one and it can be an autoimmune link it's possibly. what it is. So whether I am going to post this as a podcast or not, I don't know. It's probably been a bit therapeutic for me just to sit and talk about it to myself, and not burst into tears as well. I am hopeful that the injections might make a bit of a difference and. In regards to treatment some of the devices out there sound like they could really work for me. So playing some background noise, in a hearing aid, amplifying softer sounds but not louder. Sounds apparently that's all possible. Which gives me huge hope. I guess it's a bit like technology with type one diabetes and. We just, we all know what it means because we are in it, but I had no idea these things existed and I'm so grateful to my friend for providing me with that hope. And even if it doesn't come to fruition, it's help him out at the moment. And I'm sure there's something out there that can help. with the pain sensitivity factor to improve my quality of life and my children's and my husband and anyone else that spends any time around me make work life a bit easier when I go off maternity leave. I have new empathy for those that suffer every day from tinnitus or hearing loss, or any sort of sensory loss that no one else knows about because you can't see it. Because, yeah, it has a huge impact on quality of life. So I hope I haven't boarded you all too much. And I thank you for listening. I would love to hear, um, if you have any comments about your healthcare team and I don't mean we are going to sit here. And all bad mouth, anyone, but there's some beautiful healthcare professionals out there. And then there's others that don't quite get that empathetic side across, and underestimate the impact of a, of a diagnosis or, you know, an acute medical condition and things like that. Or even a chronic, probably more so, so let's hope this makes me a better healthcare professional. Um, And as I said, if it helps one person get treatment sooner, which can potentially mean better outcomes, then it'll all be worth it. and thank you from the bottom of my heart, to my lovely friend in New Zealand, for giving me hope and giving me that, that empathy that I, that I've needed and still need. I'm sure I'll be in contact with her a lot more. Thank you. Bye bye.