Tinnitus: Dr Sedley at NTDF 2/2

what I'm more interested got a few other thoughts that a bit to that little share but one thing I'm interested in it should we should we be changing the way we organize our tinnitus services should it's the present model of how health professional look after tinnitus in the NHS is it right is it working could it could it do more and this is related to the research and it's also simply just related to ensuring that people are even before we crack tinnitus are we treating people in position such as yourselves properly in the way you'd like to be treated so there's no right answer to these but any any feedback will be immensely and he answers to these will be immensely helpful for me so the first thing is who who have you seen about about your tinnitus how helpful if they be in either healthcare professional ways how helpful have they been what did they do well what did they do badly any immediate teeth losses you've got and Willie when I've talked talking about it I've said you'd be wasting your take and he said you could he could do what's inside he could send me up there we should have been wished me type rights ah yes that yours should we hand the my crowns anyone asking a question just for the sake of everybody here in it trying to come up we'll just give you the microphone ask a question to get your answer and then all right yeah do you want to do it again Freeman mr.

Chambers the conduit for you and and what it's what how was that what you know what what did you make of that four or five years ago and that's getting you one percent worse right okay there's suddenly worse never go back so I suppose unit to paraphrase a bit just interested or perhaps real it perhaps realistic any any other any other experiences of how you found health care professionals you've consulted tick stoppers for blood pressure and I know it must only two of them the side of one of the side effects is ringing in the ears which I'm being picked up from my GP so I have pointed out too with GP with the side effect was to news so the process of changing that right I don't know if it's a very used to your research good it could be an drug drug side effects are a very tricky thing particularly when you get into the small print ones because if you read that it's it's enough to put anyone taking off taking any medication if you sit down and read the full lists it can be very hard to know what are the what are the common ones and what isn't that yeah sometimes only only giving a trial of stopping it and seeing if it helps will will never tell you okay I wanted to share one experience I have seen the pair of parents of a friend of mine who had seen it GPS paid privately to see any MT surgeon who accused her of being mad she took a bottle look said why did you bring a bottle of water into the consultation that's not normal and in the end said I don't know what you're here for and it seemed to do her a lot of a lot of harm by basically saying not only I can't help you but but you you know you're wasting your time and mine to come to come to me so I well that's an isolated one I wasn't sure if anyone hadn't encountered similarly if not if not if not hostile at least you know tippet of but maybe we can do things under in a show of hands where do people feel if you do you feel like you're being taken seriously by the medical profession by health care professionals you've seen them do it okay yeah good good so I've got three in it and if anyone felt like they've not been not been taken seriously have option there's no krabi is and so we see first business off was horrendous it was the surgeon and then I went to my own GP boxes and the first doctor doctor I saw then gave me I'm dribbling and one of the side effects of amitriptyline is tinnitus and he did read libel so I took that for a month and it was horrendous nice and now I've been seeing different doctor and she's been watching a fantastic events Lucy yes and tell us okay so make mixed but the one who made it worse was trying taking it seriously and try to thank you well thanks everyone histories shared there so it's some other slightly more technical ones I suppose are more specific ones if there were tennis as tennis a specialist you could get referred to to see easily but who you knew couldn't offer you any medicine or treatment that would make the tinnitus get quiet or I'll go away but was just a specialist thing could discuss it with you which would you would you want to have an appointment at the hospital to see you such a person so show it show of hands for who who would who would like it's a certain sir probably at about three quarters here and then I heard at least once so HAMP hands up for no I heard at least what least one no and it you know I think these are you know there's no there's no right answer to these I'm I'm not sure if I were you know was troubled by my tennis as what what side what I think that but that's that's interesting and and okay for all the people who've said yes what would you be wanting to get out of such a consultation if you knew there was no treatment so to speak so like should I come round this is I just want to know as much as I could about the condition on medication yeah okay so knowledge advice on medication so I'm not trying to snap the camera I just find when you go to the tinnitus clinic I mean in all the tinnitus therapists they can get rid of your tinnitus just told you so yeah what you makes you feel so you can get your life back it's very inspiring to hear who do you see it to the batteries teed I wondered if it might be actually sex I'm sure anyone anyone else okay good I've got even more technical questions as well okay so that we might be able to do some of these in show of hands cuz they so when you first developed your tinnitus hamp hands up for who had heard of who who had heard of tinnitus who kind of thought ah this is tinnitus yeah okay that's about four or five people on who had no idea what it was okay so Lea a clear majority maybe it's a two-to-one split also okay okay and then how how long did it take you to consult well if you did to consult a doctor or other health care professional who did only anyone sees someone within the first week so one in the first week first two weeks first month and it will keep your hands up if you said in any less time so it so we're up to probably more than half by by a month and then within the first two months you more okay and what about if not consulting a health care professional who read up did anyone read up on the internet about it within within the first week if there was it must have been a very rudimentary not not a publicly accessible internet thirty years ago no right okay and then oh sorry sir okay it's such early days you don't have any you don't have any idea whether this is just going to so I'm really asking to put yourself in the mindset of what you made of it then you have no knowledge of how anything's gone since wait and then said okay well I can give you a treatment but I'm just trying to get an idea off so for a show of hands who would have in that position taken a treatment involving taking tablets yeah and this isn't it it seemed you'd have no idea whether the tinnitus was just going to go away on its own accord okay so most people would take tablets what about having injections yeah what if what if you had to come into hospital so you've had your tinnitus a week or two weeks you might have to come in have a day case admission to the hospital sit there on the unit all day show of hands for who would okay all right and what about taking a medication whether whether whether daily tablets or or of another kind that might give you side effects like drowsiness concentration difficulties it's still still fairly high okay that's very interesting to know and I think that's that's quite enough specific questions for me to come with anyway but can I just make a comment I I come at it from a different angle but I had a tumor which caused the tinnitus so diagnosis was vital for me early on and that I was given a scam and I had to GPS I've boxed uncut with one was very cynical and said what your GP said go away live with it and the other one who was a female GP who was rather more younger and open-minded and said did it come on suddenly and with a tumor that that's very significant the one thing you haven't gotten one day you have and she she got me the scan and the hat I had a long-standing tumor and hand it out I've forgotten the drift what to say so we're talking about a bit so just to summarize in case anyone didn't hear so the diagnosis was vital for you because you're finished sister turned out to be to do with it caused by a tumor and assuming possessive acoustic neuromas estabilish follow me yeah yeah yes Ernie oh you had a GP who was dismissive but one who took it very seriously and said it's come on suddenly let's scan you and I guess yes found that you were in her pants dismissive GP would have gone down tried to analyst race exercise it but in my mind all those tumors are very very rare I'm grateful to that lady GP who had the understanding to think of the possible yeah and and many and it's you know it's a fair point that you know these acute acoustic or auditory nerve tumors are the needle in the haystack but though there are many people who will say well if you have tinnitus that's just in one ear check check for it and you know a lot of people will will scan everybody and you know you do enough scans you do you do find them and see one or two people with senators tutor due to these that's a very that's a very important point because we've we've been really talking about some of this idiopathic or common or garden tinnitus but yeah there are there are those those significant minority where something because if you hadn't had it picked up I guess things would have would have progressed with the hearing loss and tinnitus and possibly other problems I was just going to sleep on you're asking about injections and tablets and medication I think when it first starts everybody is so distressed somebody said would you take this tablet and they thought it was going to cure yeah we'll just tape anything yeah all of it yeah give work yeah that's a really good point and actually because my my group my gmail knows that I'm interested in tinnitus because it sees it in my emails and the banner always says take this put peel or potion for tinnitus miracle cure I've never clicked on any of them but there's a lot of snake oil merchants out there and I mean it's a good point and it's actually very interesting to know that it's not just the chronicity because I could almost expected that one year they might have said well when it was just there for a week I thought so it'll go away and then the distress has built up but it's interesting to know actually the you know the the distress and sort of upset and everything of it was right right there from the stands so that because sort of schizophrenia for people hearing voices and things like that when you go something like say I'm going on you think well have I got this and before you go through the or everything you think oh my god yeah and it's in it and that's a really good point cuz tinnitus is technically a hallucination and everybody worries about from the hallucinations we see a lot of people to get music as well I think that's probably underreported the more complex it is the more you're worried that you'll be told you're mad or committed to some kind of institution or but banned from this or that which it which is not true / – the you know it's a but it's a real worry that's one a lots of people share isn't it a bit more seriously because it's not the past as a disability and or some people it can be really stressful I really agree I mean you need you have every parts of the spectrum from shrugging it on with it – you know cannot enjoy anything anything in life existence is completely dominated by hands well in the middle of the night like that a weak shot with a shock no sort of thought right no no once once I wake up but no thing it's late it's very difficult to get back to sleep two to go did you want sir well I have it in my right ear and sorry I don't do today that's ago I was told I have a wireless arm law yeah and they thought I don't get a full night's sleep word help does help yeah I don't have anything left here but out of the blue I got a booming noise right it's just just now and then right any to any time or just when you're falling asleep or oh it's not every day months go by and suddenly out of the blue boom you know and I was given treatment on their dreamin yeah school but it gave me a pain in my other doctor said get rid of this plug it was what relevance is it whether you've got it in one year or two because a lot of doctors do ask that question and I had it in one year for a long time but over recent six months it's now in the other ear well this being jest why it's enough having it in one and the deafness and Genesis together it's a real it's a real double whammy insult to injury isn't it I mean I think that the reason doctors oh sorry I learned what God to your distance the I think the reason some of the doctors think from a diagnostic point of view comes back to what we're saying about tumors on the on the auditory nerve that if it's one purely one-sided they think all hang about is this due to a brain or you know central nervous system cause like a tumor and in reality only even only the very small minority of cases in one ear are due to that I'm not sure if it's ever really been looked at actually whether you can get it in both ears even if you've only got something in one era I don't know if enough is known but I think I think that's what they're thinking whether there's a rationale to it I don't know well the curiously I mean I'm one sided tinnitus where the tumor was and I had a subsequent elimination to cut the auditory nerve to try and stop the tinnitus it's actually made that it's just worse but I find when I'm lying in bed at night I get tinnitus in both ears and it's as if being horizontal claw and it you can almost feel it traveling around the bones through your skull into the other rear I think does it sound ridiculous yes I think about everything everybody's set up until now sound sensible but that there no I mean Genesis is very sensitive to position changes pressure changes in the air in the whole head and neck area and the balance organs this so there's a lot of work going into what they call cross modal inputs in tinnitus from the valence system from the head and neck from the feeling systems from the muscular system in any of these things can feed into it calls it exacerbated so it it's quite common for position movement for pressure changes jaw problems neck problems any of these things will just changes in position to to change the tinnitus experience so we need to do we were things spinning or like you had any I was gonna say I'm I mean um I'm hasn't got enough experience to know the full range of things but they're very wide ranging it's here oh yeah thought you've gotten like that yes that happens to me that if I lie flat it seems to be worse and then I'll set up impaired and put fillers problem so forth so I'm smaller sitting up and it it's quite a yeah I mean you wonder whether it could be anything to do with pressure changes yeah it's certainly certainly people with high high pressure in and around the brain classically reports are sort of bilateral whooshing tinnitus that goes with the pulse but in me that'll that's often worse online and it could be that even just the physical and pressure changes you know in and around the brain that that just just tips things have any test being done in like hyperbaric chambers and see if it affects hype is a hyperbaric chambers I think it has been looked up or people with a cute sudden severe hearing loss I couldn't tell you what the results are but that some of the ENT surgeons when they see people will use hyperbaric or high flow oxygen with the the thought that it's a compromise in the blood supply to the cochlear that causes the hearing loss and that that might help more of it survive I'm not sure of the results but I haven't heard of it in long-standing tinnitus only in that acute setting does anybody know why you get them the feelings in your ear a fullness in air and everything like that what causes all lat that's a good question and I've wondered this could certainly a number of people with with tinnitus reports a foot a fullness a physical sensation you know touched tactile sensation in the air and sometimes even pain I've not I've not quite understood it other than that we know there are these rich cross modal links between the sort of the feet the bodily feeling the hearing and other organs and so we know that tinnitus gets fed into by all these other things maybe maybe it feeds out and makes sort of is physically attributed to the hear but it's I think it's an interesting question I'm not aware of a good you know scientific arms that is and I've noticed and a lot of people have here mentioned the same thing that you reasonably help you with your tinnitus and then you have a good rest a good sleep and suddenly you wake governess worse than ever after a good rest that seems counterintuitive isn't it yeah and why why it should why that should why that should happen I can sort of collapse at some straws of theories but I don't think we you know we haven't settled what is it what is it that makes a good day in a bad day and actually that's it's a really exciting question because I mean there's a range I know from talking to a lot of people some people the tennis is wanted very much a level other people get real ups and downs and you thought if even if you couldn't make it go away if you could find a way of getting it at a good day all the time you know that's that's worth playing for you know my understanding in a great many cases it's one of the reasons for the studies that Donna tried to see other things in the brain that correlate with the day to day experience in tinnitus and I was getting a hint of that in one of the studies but no good no good solid answer to that most of wants to do in finding envy you you your work actually it's fascinating stuff yeah thank you and it's my privilege to be able to to do such things and work on something that you know find interesting what is a very important cause well she won 90 you had crafted between mood or stress levels on the intensity of the tennis that's been perceived and I know that must be difficult about to try and measure it could be measured a lot of people report it to do you get the sort of common experience that the tennis is worth under under high stress yes sir yes I mean I think it's been said in previous cuffs sometimes when you go on holiday or if you're in a particularly relaxed atmosphere you find that you're actually hardly aware of you to notice and there is certainly a connection a phone between certain days I have you know there are you unbearable then other days I don't know why I should assess it somebody was saying perhaps a snorer was a good idea to keep a diary because then you can get quite obsessed with utilities but Sirdar enough days where you know it's very procedural you know it's interesting and then so worse under stress but then we've just been hearing sometimes when you're really well slept and well rested it can come on civilization yeah why it should why all these things should play should play parts I mean all of you know I think these are all things these need to be built into our models and our understanding of tinnitus all of these things because I think with you know if we can't explain these all then we're not really understanding tinnitus properly but I've certainly I know people don't this and I think in the past the human being a flipchart about which food or drinks actually trigger off but I certainly see a connection between alcohol cheese and my moods and perceptions of tinnitus alcohol effect hills because I've come across one whole zone rate for two or three frames really chilly it really chills me out but I see but then suffer the next year for go over a certain limit and cheese but then there's not to do with your mood you see well Sochi cheese is a funny one yeah it's a Korean yeah well it does well yeah if anyone's ever heard of these old monoamine oxidase inhibitor drugs they used to use them before we have modern antidepressants and you couldn't you couldn't eat cheese or Marmite or foods that contained a lot of tyramine or you'd get what they call the cheese reaction and you could become really unwell with it because as you say it does excite the bread anyone familiar with cheese dreams yep I've certainly got vivid dreams with with cheese or Marmite and it's it's thought to be the tyramine it's it is used to but you take cheap cheese and a lot of red wine leave there mate to you know to activate your imagination yeah it's a great manufacture and it will be interesting to see are these are these systematic are these individual differences are there are there systemic things that can further elucidate our our understanding and alcohol is an interesting one so I've met at least one person who the tinnitus goes completely over there seems to be a particular blood level and over that have gone well haven't had any red wine for a few weeks now it hasn't made a hit but the difference to my tune it I know I mention this did I carry on I mentioned this to the G because I was taking medication so I refrain from the red wine dry and dry January no it's smoking in October isn't it is alcohol in January yeah I mentioned this to the GP in you said well he says you might kill you too and thinners but then you might end up with an alcohol problem I mean but sometimes this used to be a physical I was just saying to somebody I've just met for the first time there were this afternoon and we seem to have several things in common and gluten one though I've never actually seen the that common when I come to previous groups is if I actually grew up a fifty fifty five miles an hour it in my car I don't have to do with the tire tread noise but actually it is far worse and a bit if we go up to seventy it is unbearable so if I go on a lot card you and you see my son and back the chair my head is ringing for about a day afterwards because of this long drawing got more rate coming five or six miles no there's not a physical thing is do you find the tinnitus gets set off by being in a loud environment for like do you dino dee-lite is worse the rescue after a burnin noisy not essentially this is a real I mean there's a there's a lot of people interested in tinnitus subtypes and one of the earliest things that seems to distinguish categories of tinnitus is I mean this goes back to sort of 1990 and Jastrow voff and all of that but he he would say one of the key distinctions as people whose tinnitus is suppressed by sound and those who who's exacerbated violence and the larger proportion it's suppressed by by other sounds but there is a very well recognized group who get worse i've certainly met many such people and i think it i mean it can be particularly troublesome because actually being in a louder in have it being in a noise rich environment is often one of the best ways of getting rid of that or you know distracting from the tinnitus but if that if you can't do that so you know you end up in a very very difficult situation i imagine but it it sounds it sounds like you're but you know some somewhere into into that category probably just the same as you travel thoughts in the car it so you can have bought yourself a set of earplugs if I'm traveling gonna trouble what the fairway in the car put the probes in yeah yeah now Troy book is that legal if you pay if you pay for them if you take them finish off without paying I'm the opposite to this gentleman here I love nothing more than motorway driving and 60 or 70 and the loud buzz absorbs mitosis and I don't know I've got it and it's the only occasion I don't know I've got it yes I'm I'm your other time yeah yeah I'm being proven right this is a rare occurrence to me my job was a heavy good driver fifty years I've driven over a million males and never had any bother till I went one deer to made GP he's to get me a syringe quite regular and that churns the system over stop daughter in the surgery he had the border that Medical Center cross the road and it was a new syringe more or less arranged a human and that was a dear may forget my record of it till in a minute the D in a minute does he amazed nice and it Astana yeah big subscriber to here syringe I've done it we've done it once when my colleague said please syringe my ear that was a I don't think it did anything that's I've got my little five days a year so what's up no sorry um it's just goodbye it was going back to being cheese and facility I was disconnected the treatment I was advised not a drink coffee because of the caffeine until you usually for a drink the caffeine take note of the C coffee I prefer it to anywhere and not read cheese which I love look she's so I faithfully carried on not for once I think if what we'll have learned anything is that we're all different anyway some people you know the road knowledge is next yeah it could well have been just as easy the stress driving on the motorway anyway maybe here Louis driving on the motorway to me it would be don't be living on me nervous quite honestly with what continually constantly in all that time that wouldn't tell I was also a porter foots gonna the pillow speaker who probably mp3 just whatever I have it my greatest problem and I've had lately gentleman here I thought to this four more years that up in think over and it doesn't change one little I would get very little sleep at nights and is that safe I could be the frame and quite honestly didn't do one thing for me I can't the tinnitus group for quite a while and I stopped coming because I initially I found it tough because I realized that you're not the only one the synthesis of you is you yeah and they finish it didn't do nothing for me a thought so I haven't before my tinnitus was preceded with the hearing loss menus type symptoms hmm this went on for a while I was quite worried with with everything the tinnitus came it initially louder and louder till it reached the point mr.

Cameron at the ent Freeman he perforated my left ear drum which alleviated the many old symptoms which I fade also if my tinnitus run so I'm going to feel unwell with seasick types and things I find paracetamol oops magically with that but tinnitus went it became the major thing had the hearing therapist held up the Freeman but the the best help I've had with it reads my cheek pain and they prescribed amitriptyline and I started sleeping and being paranoid and we've got and that's it's interesting to hear your experience as being very much help average reptilian and another experience of being exacerbated by a me trypsin in it it may be some of these big drug trials not delivering group level benefits because it's mixing the people who do well the people who move and the other people who don't respond in it you get this average average view although it doesn't do anything but actually you know is it's you know is there something in this into it you know it comes back to the subtyping thing I know the there's big international effort to do work on solid subtyping of tinnitus for these reasons I know the Nottingham group of doing a lot song a lot on this but this is it's interesting coming back to what what you said so about sort of being told to refrain from cheese and this and that so what one one key thing is anything that doesn't work if you unless you like doing it don't do it because you know it's it's all it's all more ways in which you know begin to become owned by owned by the symptom and the condition as opposed to sitteth saying actually so you know as I'm saying before if you the treatment you like if you think it helps you like taking it like doing it brilliant but otherwise you know otherwise you know as it's been said a lot we're all you know also different you've just got to do what what works for you and there's probably no one no one that knows your tinnitus better than yourself no it's good yeah alright um yeah if there's no more questions on that how would you say big thank you yes you

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