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Dr. Michael Boedts — Transcript

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0:00There he is. There he is. We're so
0:03happy. Hi.
0:09We are so happy.
0:12Hi. [laughter]
0:14>> I couldn't find I couldn't find a Zoom
0:15invitation, so I was stupid looking in
0:18the middle. Hi. Hello.
0:20What I do with my cell phone, with my
0:22phone for the hour before the meeting is
0:26I have the Zoom link on uh Poppy because
0:30it happens to me every time. So before
0:33we start, Michael, we know how to
0:36pronounce your last name. It's Boots,
0:38right?
0:38>> Boots. Yes, that's it.
0:40>> So how do you pronounce is your first
0:42name Michael or Mikuel?
0:44>> Michael.
0:44>> Michael is fine. Michael is fine.
0:46>> Big crowd. I am so happy we have a big
0:49>> so many people.
0:50>> Welcome everyone. If you can uh get if
0:55you can be on your video uh if you
0:58cannot be on video we understand but
1:01more people that are on video it's a lot
1:03easier for a speaker to talk to live
1:06faces. So thank you very much. Uh
1:09everyone here knows our fearless leader
1:13Dr. Jim Henry, the guru of all tenitis,
1:17and our amazing host, David Trorgi, who
1:20just saved me. And uh I will introduce
1:25you to more people later, but I I am
1:28thrilled and delighted to have Dr.
1:30Michael Boots here. He is an otologist,
1:33an ENT specialist in Gent. Is that how
1:38you say it?
1:39>> Yeah, in Belgium.
1:41>> Belgium.
1:42>> And
1:43We This is why we had it on a special
1:46day. If you will keep yourself muted
1:49until we go to the questions and
1:51answers. Uh when we go to the questions
1:54and answers, please be mindful. We are
1:56recording this. I'll send the recording
1:58out tomorrow. It will end up on on uh
2:01YouTube. So, be mindful of anything you
2:04don't want that's out there. Uh, and
2:07after when we go to the Q&As's, if you
2:10have a question, if you can hit that
2:12little orange hand or wave or holler or
2:16if you can't handle uh please try to
2:20restrict the chat because it's really
2:22hard to monitor the chat and you'll see
2:24me with these looking the text is small.
2:27So, just one more thing I need to Jess
2:31did you want to ask something before we
2:33start?
2:35Let me know.
2:37>> No, there somebody has their hand up.
2:39>> Okay.
2:39>> Okay.
2:41>> Well, I'm going to read you our
2:43disclaimer.
2:45Our tinitis hyperacusis and other sound
2:47disorders groups are peer discussion
2:50groups focusing on updating and
2:53educating patients who live with sound
2:55hypersensitivity disorders which is
2:58mostly tinitis, tinitis, tonitis and
3:01hyperacusis. The information is intended
3:04for educational purposes aimed at
3:06advancing discussion groups members
3:08understanding of current research
3:12uh therapies and trends in the heel in
3:15the field. We don't uh we really don't
3:18endorse any specific product institution
3:21or researcher. This does not constitute
3:24medical advice. Uh it's for general
3:26information only. If you have any
3:28specific concerns, please go to your uh
3:32practitioner who I have to say as we all
3:35know will not know as much about tonitis
3:39and hyperacusis as you do with the
3:41exception of Dr. Boots. Uh so thank you
3:45so much. Do you want to share your
3:47screen or are you just going to talk?
3:49>> Well, I I made um uh I think I have 20
3:53to 30 minutes you told me. Yeah.
3:55>> Right. Fine. And I have a PowerPoint
3:58that I gave last week. It was a
4:01conference on Tinus TR
4:03>> and I I I have that PowerPoint, but it's
4:06rather um theoretical. So I hope it's
4:09okay. If you feel it's too theoretical,
4:11just tell me.
4:12>> Don't worry about it.
4:13>> We are thrilled to hear some real
4:15research.
4:17>> We don't always get to hear that and so
4:19we're thrilled. So if you will hit your
4:22share screen and uh we'll start unless
4:26you want to talk before that. That's
4:28>> no no it's fine. Uh if you feel it's too
4:30theoretical or if we say stop down a
4:33little bit just tell me and I stop and
4:35we talk during the presentation. Uh
4:38>> thank you. [clears throat]
4:39>> So uh
4:42here it is.
4:45>> Hit the little share screen button.
4:47There you go.
4:48>> Can you see it? Yep.
4:50>> Okay.
4:50>> Yeah.
4:54>> So,
4:56yes. So, we're treating tinitus and
4:57hyperacusis and it's all mixed up. Um it
5:00in the beginning it all looks mixed up
5:02and there are some similarities and some
5:06um
5:08things that are not similar. Uh so in
5:10tinitus we have continuous tinitus. We
5:12have a lot of patient patients with
5:14tinitus with fullness feeling, vertigo,
5:17hypercusis,
5:19uh pain, uh uh headaches, other
5:23complaints uh around the head. Then we
5:27have people with reactive tenitus which
5:29is very similar to hyperrais. Uh every
5:31time there's a sound they feel the tinus
5:33goes up and you have the immediate ones.
5:36So there's a sound and whoops the
5:39tinitus goes up and then you have the
5:40delayed many feel that when they go to a
5:43restaurant in the evening the tinitus is
5:45a little bit louder.
5:47So there's a difference between these
5:49immediate and these delayed forms and
5:51then you have tinitus disorder which
5:53means tinitus with uh concentration
5:55problems anxiety sleeplessness and so
5:58on. So there are different types of
6:00tinitus. Now hyperacusis as you all know
6:03because I I have the impression that
6:04most people with hyperacus are very very
6:06much uh know very much about it. Uh so
6:10you have loudness, anxiety, annoyance
6:12and pain hyperacusis typically. But
6:14there again you have people who tell me
6:16we notice that most of pain hyperacusis.
6:20Uh some people uh there's a sound and
6:22then whoops their pains come up comes up
6:25and then the sound stops and the pain
6:27stops while in others the sound comes up
6:30nothing happens but after 20 minutes of
6:33sound exposure slowly the pain comes up
6:36and then it lasts for hours weeks so two
6:40different types very strange then you
6:43have people have a a stable threshold
6:44and an unstable threshold people who
6:46tell me okay every time I'm exposed to a
6:49sound my loudness or pain or whatever
6:51comes up and it can last some time but
6:54then when it goes down I'm going back to
6:56the to the previous state nothing
6:59changes in the long term while in others
7:02every time there's a sound exposure they
7:04have their symptoms and then they notice
7:07that their threshold has come a little
7:09bit low so the problem has become a
7:12little bit worse and over time these
7:14people get worse and worse and worse
7:16with every exposure so again two
7:18different types
7:19And then also like in tinitus disorder
7:21you have sound hypersensitivity disorder
7:23which is hyp hyperacusis plus
7:27sleeplessness uh anxiety concentration
7:30problems and in the end loss of energy
7:33depression and so on and then you have
7:35all kinds of other complaints and this
7:37is with my background from ENT where I
7:40started with finitus that is the
7:43fullness feeling in the ear which I
7:44notice very very very often in
7:48And then uh vertigo uh pain, migraine,
7:54um nasal pain, uh burning mouth
7:57syndrome, all types of symptoms that go
8:00together with tinitus and or hyperus.
8:04Now um
8:07I come from tempanic membrane and tensor
8:11tmpony background which means that as an
8:13ENT I started out by uh working with the
8:17tempanic membrane. Um and uh what I
8:21found a long time ago was that if I
8:23applied a paper patch on the tempanic
8:24membrane that a lot of complaints were
8:27better. Very strange very very strange.
8:30So people with hyperacusis that said oh
8:32my hyperacusis is better or vertigo or
8:35pain fullness feeling very often tinitus
8:38sometimes. Um so I did it for many years
8:44for a long time I just tried by trial
8:46and error I applied cigarette papers on
8:47the tempanic membrane and um I found
8:51that it worked in many cases but then
8:53when I put it on the wrong location on
8:56the tempanic membrane people got worse.
8:59So I removed it and I put it on the
9:00right location and then say they said
9:02it's better. So there must be nerve
9:05endings and and receptor endings that
9:08measure the tension of the tempanic
9:10membrane and that respond to it when the
9:12tension of tempanic membrane is too
9:14high. They provoke problems. So um I
9:18read a lot of things. uh clock is the
9:20man who started everything with tensor
9:22temp tensor temp syndrome in the 70s but
9:25even older books 1920s 1930s 1910 uh the
9:30older ENTs who had a lot of interesting
9:33information and then there was work by
9:36Miriam Westcot who you know uh who
9:39developed the concept of acoustic shock
9:42and then Arnon Norina uh which I will
9:45talk about a bit later and then finally
9:47um Robangar also
9:49And so what we developed was an idea
9:51that uh this tensor tempony we started
9:54with tensor temp but now believe tens of
9:56vid palatini is also very important. So
9:58you have those two muscles tensor temp
10:00which increases the tension of the
10:02tempanic membrane. tens vid paralatini
10:05which is the brother uh of this muscle
10:08and increases well it very in a very
10:11difficult way closes the taken tube
10:13opens it up here and closes it in
10:15another part
10:17and we believe that these are at the
10:18center of a huge system that's related
10:21to attention and you have in this system
10:23you have inputs
10:25you have central throughput and then you
10:27have outputs and the general idea is
10:29that if a sound arrives in my ear these
10:34receptors will carry capture the sound
10:37they will send it to I believe this is
10:40the way it acts but I'm not sure but I
10:42think that's the way it works these
10:44receptors activate tens of tempt and
10:47maybe some other muscles these start to
10:49contract so there's nothing you can do
10:51about it whenever there's a sound these
10:53muscles will start to contract okay and
10:56then you choose to listen to that sound
10:58then they contract even more
11:01and The fact that these muscles contract
11:04sends signals to other locations to the
11:06output. So your skin will get a little
11:09bit more sensitive.
11:11Part of your uh smell, part of your
11:14taste, there's a trigeminal aspect on
11:16that. So the same nerve will be
11:18activated. Uh in animals, the whiskers
11:21will be activated, the ears will come
11:23up. Um the hairs will come up a little
11:26bit. Your muscles will start to
11:28contract. I believe that your uh
11:30vestibular system so your equilibrium
11:32will be activated so you're a bit more
11:35stable
11:37um and you can get local uh symptoms
11:39also. So the general idea is if a sound
11:43comes in then your whole your antenna
11:48will be activated. Uh the things that
11:51capture information from the outside
11:52world they will close off your inner
11:55sounds and make you open for external
11:58sounds. Not only hearing but everything.
12:03Um same if you get some electrical
12:05stimulation. This has been proven long
12:07time ago. Same if you contract certain
12:10muscles
12:11um and the whole system will be
12:14activated when you want to listen which
12:16means or because you want to have some
12:19listening effort uh some jobs you
12:22because your hearing is not so good so
12:24you're going to really to activate the
12:26system and you see what I do I'm I'm
12:28listening I'm contracting all those
12:30muscles
12:32uh or because of uh uh uh vigilance
12:35alertness
12:36so hyper vigilance which we all know is
12:40uh when you think the world is is not so
12:42safe, you try to get as much information
12:44and you're going to activate the system
12:46and it happens in all of us. Um and very
12:49strangely it's only when this period of
12:51stress is over very often that
12:53complaints develop because the stress is
12:56over but the system remains activated.
12:59So you have this acoustic stimuli uh you
13:02have this central stimuli hypervigilance
13:05listening effort. You have sensory
13:07stimula the nerve endings you have motor
13:10stimuli the the muscles the jaw and neck
13:11muscles and then you can have local
13:14stimula also for example a teeth
13:16problems or whatever. And the idea is
13:20that every time you activate it's called
13:23trigeminal cervical trigeminal is the
13:26face. It's mostly the lower part of the
13:29face and the ear. Cervical is the neck.
13:31So all these are inputs that activate
13:34the system and then you get this
13:36increase in uh sensory output. So so uh
13:41your your skin your muscles but also
13:44your hearing you can get your hearing
13:46will get a little bit sharper. It's not
13:48that your hearing gets better. It's not
13:51that you hear if you do tests before and
13:53after treatment for this it does not
13:56change in in quantity. It's about
13:58quality. It's the intrusiveness of the
14:01hearing. It's the sharpness. It's the
14:03emotional aspect of the hearing. It's
14:05all those things that are not really
14:06content but everything that's around it
14:08that gets yes sharper.
14:12Um okay. So this is the idea that we
14:14have and not all of this has been
14:16proven. Um there was a huge leap forward
14:20when Arnon Norina
14:22did his um results and actually he has
14:24proven part of it. Um part of it is
14:27still hypothesis. So uh clockov a long
14:30time ago ago described the tensotmpony
14:32syndrome and tensotmpony syndrome is
14:33actually all of these little bit of
14:35hyperacusis a little bit of tinitus a
14:38little bit of uh muffled hearing or uh
14:42dull hearing a little bit of fullness
14:44feeling or a lot of fullness feeling a
14:45little bit of headache little bit of
14:47vertigo. So a little bit of everything
14:49and actually that's not so difficult to
14:51cure if you see the clusters. So the the
14:54thing is you have to see those clusters
14:56of symptoms and many doctors uh if you
15:00if you don't know it you won't see it
15:02but once you see it you can't unsee it
15:05and so this all these uh complaints
15:08together help you know if this is a
15:09diagnosis so I I work with paper
15:11patching I work with um physotherapy
15:15botox uh a lot of things to calm down
15:17the system so what we actually do is
15:19decrease the inputs so the outputs
15:21decrease also
15:23Now
15:25when you have real tinitus or
15:26hyperacquisit this more than this um so
15:31you all know in tinitus everybody talks
15:33about neuroplastic changes and the
15:35typical example is in tinitus uh okay
15:38there's hearing loss so normally the
15:41input from the ear coming to the hearing
15:43pathways is disconnected they don't know
15:46what to do so they're going to couple to
15:48another input so from then on instead of
15:52hearing fibers coming in and going to
15:55the cortex, you'll have triinal cervical
15:58fibers of the listening system. So I
16:00call this the hearing pathway. I call
16:02this trigeminal cervical complex. I call
16:04this the listening system. Uh and from
16:07then on, every time you increase your
16:09input in your listening system, you get
16:11an increase in tinitus.
16:13So this is the classical example. But
16:14many people don't have uh don't have
16:17hearing loss. We see many people without
16:19any hearing loss.
16:21There's another type Weinberger is
16:24somebody who did a lot of research on
16:25that and he showed that you can have
16:27neuroplasticity
16:29without any hearing loss. You don't need
16:30hearing loss. What you need is
16:33conditioning, urgency and a trigger.
16:35What this means? Neuroplasticity means a
16:37brain changes. So when you're a student
16:40and you want to study and you want to
16:42study but you don't have any exam, it's
16:44very difficult to study. The system
16:45doesn't want to change. Costs energy.
16:48You don't want that. But if you study
16:50and you're having an exam the next day,
16:53it's very easy to study. Everything goes
16:55inside your memory is is is triggered.
16:58Why? Because there's an urgency. You
17:00have to. So the system says, okay, we'll
17:03change. Um also there's a conditioning.
17:06If you think well I missed my exam, it
17:09won't work. It's not going to to happen.
17:11Your neuroplasticity, you won't memorize
17:14anything. They think, okay, I have a
17:15chance of getting through. It's worth
17:17it. you get there and then you need a
17:20trigger. The exam is the trigger. Well,
17:22the same in tinitus and hyperrais mostly
17:25in tinitus is people tell me well I went
17:28to a party and oh, you know, the music
17:31was not that loud and I was a little bit
17:34afraid that something would happen and I
17:36came home and there was tinitus. So, you
17:37see there's this conditioning people
17:40thinking, "Oh, this sound will harm me."
17:43um and then they start to contract their
17:46muscles because they get hypervigilant.
17:49Uh there's an urgency and when I talk to
17:51these people always always always before
17:54it happened the last week before it
17:55happened there was a period of stress
17:57intense stress. So they had it's like a
17:59football player you know they have weeks
18:02and weeks and months and months of
18:03training and then they go on the field
18:04and they get a tick on their on their
18:07legs and they crawl they they fall all
18:10over. Not because they this was so
18:12heavy, but because their muscles had
18:14been contracting for months and months
18:16and months and then they just need some
18:17small stimulus to cramp. And this is the
18:21the the trigger. And the triggers can be
18:24a sound, it can be an emotional shock,
18:26it can be vaccination, it can be a
18:28medication, it can be uh oh whatever uh
18:31an infection, a car accident. We see
18:34many things and always the trigger seems
18:36so stupid. You all say why why the
18:39stupid trigger and you don't have to
18:40look at the trigger but you have to look
18:42at what's what came before the urgency
18:44and the conditioning. So people go to a
18:47doctor and he says oh so it's damage
18:49nothing is come it's for the rest of
18:51your life and you were stupid to to go
18:53there to the party and this is
18:55reinforcement of the conditioning and
18:57this makes it worse.
19:01Now uh if it goes on and on you get this
19:04uh this anxiety those um sleeping
19:08problems concentration loss this tinitus
19:10disorders. Now the most interesting
19:12thing I think for hyperacusis anyway is
19:15that Arno Norina a few years ago with
19:17Philip Fier from Quebec and Arno is from
19:20in France
19:22they have shown that in some patient
19:23with hyperacusis and variable tinitus
19:26the tensor tony contracts in an
19:29exaggerated way. So there was an um uh a
19:33device to measure the the pressure of
19:36the tempic membrane and you could see in
19:38some patients that when you gave a sound
19:40that this device warps this tensor
19:42tempony ex contracted in an exaggerated
19:46way which actually means that this
19:47neuroplasticity has not taken place in
19:51the hearing pathways but that there's a
19:52problem at the level of the tensor tony
19:55at the trigeminal nuclei at the
19:57listening system. Um and um when you use
20:02this device you see that the stensor
20:05contracts in an exaggerated exagger
20:08exaggerated way in some patients but not
20:11in other patients. In other patients you
20:12don't see anything at all. Very strange.
20:15So what happens in these patients is you
20:18get a simple stimulus but you get an
20:21exaggerated response there. You see when
20:24the stimulus comes in it goes to the
20:26brain stem and there it goes to the
20:29muscles TT TVP tensi
20:33and then it goes to the skin to the
20:35muscles and it goes to the hearing
20:37pathways and the brain but there
20:39something has happened instead of one
20:42relay you have two or three relays you
20:44have an exaggerated uh neuron going
20:47further on um and this from time from
20:51from then on every time there's is a a
20:53simple stupid stimulus, you get this
20:56much exaggerated response. Be it in
20:58hearing, be it in pain, be it in motor
21:01contraction, whatever.
21:05Um, and so you don't need any hearing
21:07loss for this. It's purely on another
21:09level. It's is it the listening path,
21:11listening system? Is it nuclei? It has
21:14nothing to do with the ear actually.
21:16Uh so you see a small stimulus and an
21:18exaggerated response. And if this goes
21:20on and on because your conditioning is
21:22there because people think something is
21:25horrible, this is going to get worse and
21:26worse and they they get afraid which I
21:29can understand and um they feel bad and
21:33their life is getting more and more
21:34difficult. You get this urgency and from
21:37then on then on every trigger will
21:39increase the problem and you get more
21:41and more central problems as anxiety,
21:44sleepless problems but also here um uh
21:48some of our patients have pain uh
21:51starting in the ear and then it goes to
21:52the jaw then it goes to the shoulder and
21:54then even to to the to the hands all
21:57over the body. So you see this
21:59increasing thing. So I think this is
22:02neuroplasticity
22:04going on and on and on. So this is um
22:08when I see people who tell me that the
22:11problem is getting worse and worse and
22:12worse, I think wow I see neuroplastic
22:15changes happening before my eyes, the
22:17first thing I have to do is stop this.
22:20So stop this ongoing neuroplasticity.
22:23Um and I think I have to work on this
22:26conditioning, on this urgency, and on
22:28the triggers. First and for all stop
22:30this if I see somebody who tells me yes
22:32I've been having hyperacusis for five
22:35years and every time it it it it remains
22:38stable I say okay this is a stable
22:40situation I don't have to work on that
22:43so
22:45you have
22:47neuroplasticity in the hearing pathways
22:49and in the listening system or the
22:51trigeminal system and uh these are
22:54different things and what I think I'm
22:57not sure yet what I think
22:59The people who tell me I have tinitus
23:01and it's louder when I come home after
23:04an evening in the restaurant or when I
23:06have some physical exercise or uh when
23:10I'm stressed. I think that's that's the
23:12left one. I think it's in the hearing
23:14pane. But when I see people who tell me
23:17it's an immediate response uh there's a
23:19sound and my tinitus goes up or my
23:21hyperacusis is there or I feel pain or I
23:24feel noises or anxiety. I think it's the
23:26right side. I think it's sensitization
23:29at the trigeminal level.
23:32Uh again, not much of this has been
23:34proven. These are all ideas, uh
23:36observations, clinical experience. Um
23:40but it seems logical to me. So as I told
23:44if I see someone who's going in the
23:47wrong direction, it's like he's skiing
23:48on a slope and falling and always
23:50falling, falling, falling. First thing I
23:51have to do is stop him falling up.
23:54Immobilize him. And I think we have to
23:56stop this. neuroplasticity going on and
23:59the next thing is then treat the input
24:00and actually treating the input is what
24:03everybody in the field is doing for
24:05tinitus for hyperacquis there decreasing
24:08the input if you decrease the acoustic
24:11stimuli it's uh of course it's logical
24:15um you want to decrease listening effort
24:17so you give people a hearing aid you
24:20want to decrease hypervigilance so you
24:22give uh psychological treatment you give
24:25medication
24:26uh mental coach all those things. You
24:30want to decrease motor input. So you
24:32send people to the physiotherapist
24:34and we do some local things also like
24:36this paper patching. So actually this is
24:39what is treatment of tinitus is actually
24:42decreasing and hyperus is decreasing the
24:44input. Now this works people say it's
24:48better. It's not gone but you know the
24:50fullness feeling is gone. Uh the pain is
24:53gone. The vertigo is gone. my tinus.
24:55Well, it's still there, but I can live
24:56with it. Uh, hyperacusis, okay, it's not
25:00as it used to be. It's still there, but
25:02okay, I can live with it. And they
25:04relapse, of course, because you don't do
25:06anything about the problem itself. You
25:08don't do anything about the the
25:09neuroplasticity that's taking place
25:11about the changes. So, you decrease the
25:14input, but then there's a period of
25:16stress and it comes up again.
25:20And this is new. Um, and I'm not even
25:24quite sure if we be able to do that. The
25:27idea is you stop the neuroplasticity
25:29taking place. You take away the input
25:32and then you should try to get the
25:35system learn in another direction. So
25:38induce another neuroplasticity but done
25:41in the right direction
25:43instead of the system going from uh
25:47relaxed to more and more alertness more
25:50and more hypervigilant more and more
25:53answering to any stimulus you get should
25:56get the system to learn that the world
25:59is safe and that these responses are not
26:01necessary and I'm not sure if we can get
26:03there at this moment it's very difficult
26:05at this moment mostly we stop after we
26:08decrease the input.
26:11So this is what we actually do in our
26:13clinic now is when we see somebody we
26:15try to evaluate is it still going on? Is
26:19there an unstable baseline? Is this
26:21person on a slope and slipping falling
26:23down or is he stable? And then we're
26:26going to look coitions at at the
26:29conditions. We are going to look is
26:31there an urgency? How stressed is he? Is
26:34there conditioning? Does he have ideas
26:35about danger sound being dangerous about
26:39uh this thing going to be for the rest
26:41of his life about impossible to do
26:44something and then facilitating
26:46conditions sleep loss inactivity? It's
26:48incredible how many people I see who
26:51tell me oh yes I had an problem at my
26:54knee I had surgery at my feet and I I
26:56stopped doing sports uh six months ago.
26:59It's incredible once you start asking
27:01it. so many people who do not practice
27:04sports anymore and I think it it's it's
27:07it looks a bit stupid but I think it has
27:09a huge impact. Uh doing sports does a
27:13lot to all those things.
27:17Uh some medication I think may increase
27:19or decrease neuroplasticity
27:21and of course yes we have to evaluate if
27:24there are any triggers. So the first
27:26trigger may have been for example I
27:29don't know a car accident or a
27:30vaccination but then people get aware of
27:34the stimulus that is sound and from then
27:37on uh sound becomes a trigger uh because
27:41of this idea that sound is dangerous and
27:43then it it becomes dangerous at the end.
27:47So and we treat these. So we give them
27:50counseling you know these are the
27:51classical things uh u uh psychological
27:56aiology counseling explaining them uh
27:59trying to get them their sleep better uh
28:02trying to get them to do some sports and
28:05eliminating all triggers.
28:07Uh and then the next thing is actually
28:09what what the present day therapy is
28:12about. It's decreasing inputs. Now in
28:15case of hyperacusis the trigger input is
28:18sound. That's clear. That's very clear
28:20but there are sounds all over and you
28:22cannot really eliminate that. So it's
28:25more interesting to look at the other
28:26inputs which are often covered. So uh
28:30listening effort can be one and we saw
28:32it very dramatically in one of of our
28:34pain hyperacquis patients who uh
28:37worsened whose condition worsened very
28:39much because of uh ongoing listening
28:43effort hours and hours without any loud
28:45sound. So it in some people it is
28:47important and others not at all. sound
28:49exposure, of course, hypervigilance, and
28:53we see people that go to a more um
28:57scanning, we call it scanning related,
28:59so anxiety for things that might happen.
29:02Very often in hyperacusis we notice that
29:04it's more a focusing behavior trying to
29:06get the world more uh safe because sound
29:10is dangerous and and and some people we
29:12see that they after some time they get
29:15to a more controlling way uh of of being
29:18in the world uh which actually is is of
29:22course good because they make their
29:24world safer. they avoid sounds. But I
29:27believe that this hypervigilance
29:30also uh activates the whole system and
29:33makes these muscles contract.
29:36Uh sensory inputs uh motor inputs. So
29:39this is physotherapy, Botox and so on.
29:42And then local. So this is actually what
29:44we at at the present time we can do and
29:46and what we can choose from and and and
29:48I believe that we have to do several
29:50things together. If you do one thing,
29:52nothing worse. But if you combine things
29:54then you get somewhere.
29:56Uh so what can you do? Input
29:58hypervigilance medication uh
30:01psychological therapy. Uh static
30:03ganglium bug sometimes makes people more
30:06relaxed but it doesn't last. Sound
30:08exposure bivvakine is is a local
30:10anesthetic but it doesn't last. It it
30:12lasts only a few hours. Physotherapy
30:15botox same. It lasts for three months.
30:18Uh and then surgery have the the silver
30:21surgery. Um then you can try to work on
30:24the TTTVP.
30:27Uh people ask me spin palatine ganglion
30:29here and there. You heard somebody
30:31here's somebody that was happy with that
30:33and I tried it a few times and sometimes
30:35was good sometimes not. So I it's in my
30:38opinion I I I don't find it incredible.
30:42Uh again you can work at the output. So
30:44the the nerve endings BP vacine nerve
30:46blocks botox and physotherapy.
30:49So these are the things we can work on
30:54and then the last step uh which is still
30:57a question mark I'm not sure but this is
31:00where we in our clinic are now going to
31:02so we
31:04try to evaluate is it neuroplasticity in
31:07the hearing pathway or in the trigeminal
31:09system so for hyperacusis it's I think
31:12mostly or always in the the trigeminal
31:15system and then evaluate the same thing
31:18how ready are people to get their
31:20neuroplasticity
31:22directed, activated but in a good
31:24direction and we do things we do biodal
31:27stimulation of tinitus we do electro
31:29stimulation of muscles we do a lot of
31:31things and we see that uh often people
31:34respond well and from time to time
31:36people respond in a wrong way their
31:38tinitus or the hyperacusis gets worse
31:41and I think what we're doing is we're
31:43inducing neuroplasticity in a system
31:45that's still geared in the wrong
31:46direction towards
31:48more
31:50uh alertness, vigilance. So I think it's
31:53very very important but again this is
31:55not scientific yet. This is first ideas,
31:58first thoughts and we're going to do it
32:00that way and then hopefully in a year
32:03we'll be able to show something. Uh I
32:05think we really want to gear the system
32:08in the right direction. So the urgency
32:10and the conditioning get expectation and
32:13motivation, hope. Um these are all nice
32:17terms but they're very important I
32:20think. um with counseling, with
32:23psychological treatment, with starting
32:25to doing physical activity, with
32:28medication if needed. And then uh people
32:31have to be able to sleep. Uh we're
32:35thinking of medication that helps
32:36inducing neuroplasticity. And this is
32:39where we want to go to to if you would
32:42be able to induce neuroplasticity in the
32:44right direction then there would be no
32:46relapse because then from then on you
32:49could stand stimuli without this
32:52increased response. So but this is is
32:54the future at this moment we are at the
32:58stage of
33:00decreasing the input.
33:05Um
33:06so
33:08uh what we do in the clinic and what we
33:12do as a research what we do in the
33:13clinic is mainly reducing the input.
33:17So um what we want to do is to try and
33:23personalize the treatment. So we want
33:24for every patient that we see to see
33:28which of the inputs that we know is
33:30responsible in this particular patient.
33:32So it appears that in some patients
33:34hyper vision in most patients anxiety,
33:37hypervigilance, focus uh are very
33:40important. From time to time there's
33:42somebody in who there's no psychological
33:44aspect at all. We see them but in most
33:47people we all humans and we all have
33:49this um listening for it mostly doesn't
33:52matter but in some people it is really
33:54very important. Sound exposure of course
33:56is for everybody very important. And
33:58then in some people we try
34:00[clears throat] trial therapies. I I
34:02often inject local anesthetics. Uh we do
34:05electro stimulation of the muscles and
34:07if people tell us well the day after the
34:10stimulation was 20% better okay we say
34:13these muscles we can treat them we go
34:14for it. Um and uh we try all these these
34:19things and it takes us a lot of time. It
34:21takes us a month, a month and a half for
34:23these trial therapies to see in this
34:26patient well it's mainly a motor problem
34:29or in this patient it's mainly uh an
34:32anxiety problem related to obsessive
34:35behavior whatever or in this patient it
34:37appears to be a local problem uh and and
34:40then we try to get some personalized
34:42treatments of these inputs but as I told
34:45you it works people are rather happy it
34:49doesn't disappear it gets
34:51But they relapse sooner or later and
34:52then we do the same therapy and it works
34:54again. This is where we are standing
34:57where we want to go to is this. So we we
35:00doing some research
35:02and these are the things I I um
35:06I gave a talk on on in this conference
35:08last week. Uh one was with burpy vakina.
35:11Whoopy vaccine is local anesthetic is is
35:13actually what what your dentist injects
35:16and uh so you get some anesthesia and
35:18after four five six hours it's gone. And
35:22uh we injected that in some people um
35:26a bit everywhere around the ear and the
35:28muscles and the sensory nerve endings
35:30all over. And we noticed that in quite
35:33some people their tinitus or
35:35hyperacquisa disappeared for a few
35:36hours. And uh what was interesting in
35:40people with continuous tinitus it did
35:42not work at all but people with variable
35:44tinitus it did work with pulsatile
35:47tinitus and with hyperacusis. So I have
35:50in my idea variable actu tinitus
35:54pulsatile tinitus are more related to
35:57hyperacusis than to continuous tinitus.
35:59I I I really see two things and I think
36:01that's the norina thing. I think that
36:04variable tinitus is more related to the
36:07trigeminal nuclei than to the hearing
36:08system because of these results. There
36:10was somebody else
36:13from Germany who did exactly the same
36:16but on another location more centrally
36:18located at the nerve base and who had
36:22very similar uh results. So there is
36:25something there but at this time uh it
36:29does work but it's only temporary. So
36:30now the idea is how can we make it more
36:33lasting?
36:36Um I had one patient in who the response
36:40lasted for a week. So I did in her uh
36:43week after week after week and after
36:45eight weeks it had gone but that's only
36:47one patient.
36:49Um and um I am trying Botox instead of
36:53bipakin because Botox also works on
36:56sensory nerve endings not only on on on
36:58muscles but this is just the beginning
37:00and I'm not sure if this will give
37:02something. Um but there may be something
37:06there. So this is working on the input
37:09on the sensory input or output
37:15actually more on the output if it's pain
37:19more on the input if it's loudness
37:21hyperacusis [clears throat] so this is
37:23something where I think we will work on
37:27further and we hope it may lead to
37:29something
37:31um then uh I have a little experience
37:34with surgery but not very
37:37I only started to doing the silverstein
37:39technique uh I think last year. Um and
37:45another surgery that I'm doing is um
37:48when I apply a tempanic a patch a paper
37:50patch on tipanic membrane and people are
37:53happy with the result. Um normally we
37:55try to look at the underlying things is
37:57what I explained the the other inputs.
38:00Um but sometimes we don't get very far
38:02and it we don't get further we don't
38:05succeed and people three or four times
38:08tell me that they're happy with their
38:09patch and they apply a permanent patch.
38:11So it's a small surgery and I've uh I
38:14increase the tension of the tempanic
38:16membrane by applying kind of a patch.
38:19Now um
38:21Silverstein has another idea. He
38:24increases the thickness of the round
38:26window and over time he started doing
38:28the oval window also and then he calls
38:31it the extended surgery. He now does a
38:34part of the tipanic membrane also which
38:36exactly which is exactly what we do with
38:39the with the patch. So these
38:42surgeries are coming together. Um
38:45um I think what Silverstein surgery does
38:50is applying a cushion. It's like uh
38:53hearing protection on the inside again
38:55the same as we see at Botox with other
38:58things. You decrease the input but you
39:00don't do anything about the problem
39:02itself. It's my idea. I I'm I have don't
39:05have huge experience. I only did it for
39:08the last year. I did not do many
39:09patients. Um but this uh is my first
39:13impression and I think it may be
39:15interesting in some people as it
39:17decreases the input.
39:19Um same with other treatments it's not a
39:22cure but okay it can be interesting. U
39:26at this moment I have but I did only a
39:29few case I have the impression is better
39:30for loudness hyperis than pain
39:32hypercusis.
39:34Um the tempanic patching uh I don't
39:38operate very often because I like to go
39:41to the to the underlying causes but uh
39:44same small surgery and um the nice thing
39:47is you don't have any hearing loss in in
39:49the service surgery I often have a
39:50slight hearing loss uh by applying a
39:53patch I don't have any hearing loss um
39:56yes in in selected cases it may be
39:58interesting so these are local things
40:00but again this I think what we need some
40:04objective measurement to measure what we
40:06do because we're always very reluctant
40:07to do surgery. If you don't know what's
40:09happening and and there may be placebo
40:11effect and so on and I I don't want to
40:14do it that much. Uh once we have a
40:17measurement method then I think we do
40:19much more of this. We know what we'll be
40:21doing and and and how it works and what
40:24results are and then I think this will
40:25be something in the future. Um, another
40:28thing we did was Botox for pain
40:30hyperuses. And so, yes, we started
40:34because people asked us to do that. Uh,
40:37because in the Norina paper, somebody
40:40was better after Botox injection and
40:43people asked us to prescribe chopramine
40:46also
40:47um because it helped in some patients.
40:50So we had some patients that we treated
40:52with combination of chromopramin or um
40:57similar uh vanlafaxine
41:00uh clonam
41:02um and uh and botox injections intensive
41:05viparatini and the TVP which is actually
41:08one of the main muscles involved and um
41:15one did not change very much. Um no
41:21one um has really it's it's there's a
41:24lot of psychology there so he needs
41:26further psychological treatment then two
41:28people did not change very much but one
41:31did not had have it in the TVP but in
41:33other muscles
41:35uh one did not have the medication so I
41:38have the impression that you need both
41:40and the medication and the botox and I
41:42think that the medication is more
41:43important than the botox at this moment
41:45but this is all very new and and and and
41:48our experience experience is very very
41:50limited. So maybe in in two years I'll
41:52tell something else. Uh but then there
41:55were uh four people who reacted very
41:58well. One of them has relapsed in a
42:00quite spectacular way and I hope she's
42:03going better again now. Um but we don't
42:07know exactly why.
42:10Um and then three are very very happy
42:12and these were people with pain
42:14hyperuses that had not come out of their
42:16house for months or years and who are
42:19now able to go to the restaurant uh to
42:22go to parties and they come back every 3
42:24months for their Botox.
42:27Um now again this is preliminary this
42:30your it's a very limited number of
42:32patients and maybe in two years we say
42:34okay now no now we thought it was this
42:36way but blah blah blah. Um
42:39I think this is decreasing the input and
42:43as I told before I think what we want to
42:46do right now is continue this uh Botox
42:49clomopamine or Botox vendelfac
42:52medication and combine it in a broad of
42:55treatment uh as in psychological perhaps
42:59after some time even exposure therapy
43:02um conditioning urgency you know all
43:05these things in order to perhaps and
43:08then maybe some electro stimulation.
43:10We're not sure yet in order to hopefully
43:12get a lasting result to something more
43:15than just the well just decrease the the
43:17input.
43:19So this is where it's standing now uh in
43:22our clinic what we're doing right now.
43:24You see some things we succeed we know
43:27some things but a lot is still uh
43:30unclear uncertain and future work. Um,
43:35well, that's it.
43:43I don't hear you.
43:59I'm not the only thing.
44:08Have you put on your microphone?
44:36So I hope it was not too theoretical
44:38well with this PowerPoint. I hope it was
44:40not too difficult. Um it's very
44:42difficult for me to know how to explain
44:44these things without becoming too
44:46theoretical. So I hope it was
44:48>> No, it was not. It was a beautiful,
44:51beautiful, fabulous overview.
44:53>> Okay. Thank you.
44:55One thing I want to say before we go on,
44:59uh, you cannot unmute unmute yourself
45:03this meeting. So, when you raise your
45:05hand and then I'll call on you and
45:07David, our host, will unmute you. But,
45:09I'll take the first comment because I
45:11can.
45:13>> First [clears throat] of all, I loved
45:15the way we could see you up close. I've
45:18not seen that on a PowerPoint before.
45:21So, we could watch you talk and not have
45:23to look in the little square. That was
45:25really beautiful. The other thing I want
45:27to mention is not all of us, but a lot
45:31of us swear that our tenitis has come on
45:35from stress. So many people that now not
45:39hyperacusis, but with tonitis, you can
45:42have it your whole life and then all of
45:43a sudden, bang. And so many people I
45:47have talked to including myself said
45:50just what you said was right after a
45:52period of stress and the way you said
45:56that the world is a scary place. Tinidis
45:59and hyper accuses are scary and no
46:02wonder we react like that. But before I
46:04go on, I want to tell you all that our
46:07uh our uh mindfulness guru David Veri is
46:12going to present at my meeting on
46:15Saturday. And if you don't have the the
46:18form, please email me because he's going
46:20to tell you how to habituate. So, thank
46:23you, Michael. That was just it wasn't
46:26too technical and it was beautiful. So,
46:28>> okay.
46:28>> Okay. I'm going to go to the to the
46:31questions now. I uh don't speak French,
46:33so if somebody wants to get in the chat
46:36and read the French questions.
46:38Okay, Bonnie. Bonnie has a question.
46:45>> You have to unmute her. I think
46:49>> David's going to send you a note that
46:51says, "Unmute yourself, Bonnie." Then
46:53you press on the unmute yourself.
46:59You want to go to John before Bonnie
47:01gets there? John, can you uh David, can
47:05you unmute John if he can talk?
47:08>> All right, there you go.
47:09>> Hi. Uh, can you hear me? It's John.
47:11>> Hi.
47:12>> Hey, guys. Hi, Dr. Votes. Thank you so
47:15much. You know, I've been following you
47:16uh for a long time. Uh wonderful
47:18presentation. Uh love the way you're
47:21thinking about it, not forcing
47:23conclusions where they aren't there. Um
47:26two two questions for you. one just
47:28curious if you could speak a little bit
47:30about whether you feel at all hindered
47:34by a lack of
47:38precise in in terms of hypercusis
47:40precise phenotyping subcategories
47:44you know kind of the best we have right
47:45now is this loudness and pain um you
47:49know you mentioned something like Miriam
47:50Wescott and acoustic shock I'm curious
47:53if if you from what you're seeing in
47:54your clinic do you feel you would
47:56benefit bit much more from you know
47:59better subdivisions and categories
48:02then my second question is just I'm
48:04curious you said the three with pain
48:05hyperacusis that did much better I'm
48:07curious if they also had
48:09>> can I think I'm unmuted
48:11>> right right I just emailed you back
48:15>> we'll get to you right after this you
48:17finally we'll get to you right after
48:19John speaks thanks yeah thanks
48:22>> if they also had loudness or hyperacusis
48:25um the first question. Yes, absolutely.
48:27Absolutely. So, um uh I have an uh
48:34I hope tomorrow it will be ready. We're
48:36going to start a database and we put all
48:38those things in and and not only the the
48:41phenotypes in terms of uh a geometry,
48:44but these less tangible things like uh
48:47motivation,
48:49hope, hopelessness, [sighs and gasps]
48:51uh it's it's a beginning. Um but I think
48:55if we if we put these things together
48:58after some months we'll get to know what
49:01is important and what is not. I want to
49:03go to all these human things actually.
49:08Um and and then the holy grail would be
49:11to have some objective measurement.
49:13We're still not there. Uh that would be
49:15wonderful but a database will be the
49:18second best thing I think. Um and these
49:22people had uh loudness hyperacusis. I'm
49:25not so sure it is possible. Um my
49:29patients with pain hyperuses very often
49:31have also these other things the
49:33reactive tinitus the loudness
49:34hyperacusis
49:36um these come together and and I think
49:39these are the other outputs uh which are
49:42activated also. Uh but uh in these
49:45patients if it was there it was not so
49:47important for them. the pain was really
49:51the most important thing. Um I have
49:54another patient who did not react but
49:56who was happy with the silverstein and
49:58who said after the surgery that his
49:59loudness was better but not his pain. Um
50:03yes very difficult to to tell something
50:05about it. It's very difficult.
50:09I these are similar. I think the
50:11mechanism in loudness and pain and and
50:13and even annoyance and anxiety hyperus I
50:17think the mechanism is the same but I
50:18think these are different pathways.
50:28>> Okay. Are we
50:29>> Thank you.
50:30>> Can we go on?
50:31>> All right. John, did you want to say
50:32some more?
50:34Uh God, I could talk to both for hours.
50:36I one follow-up question would be sounds
50:38like maybe your expectations for the
50:41tempanic device developed by Nania. Um
50:46it sounds like it's pretty variable and
50:47you're uncertain if it's really going to
50:49be objective and and diagnostic. Would
50:52you would you comment?
50:54>> I think it's it's a wonderful tool.
50:55That's a wonderful tool. Um there are a
50:58few problems in that um
51:01you have to make some sound and then uh
51:04which sound are you going to give
51:06because it's not only about DC bells uh
51:10some people you know that uh patients
51:13say no this particular sound or that
51:15sound no for me it's that sound oh no no
51:17no for me it's that other sound so uh
51:20you can give sound I just do ting ting
51:23ting and then you see this tensipony
51:25going up but how can to standardize it.
51:27It's very difficult and if you want to
51:30do clinical studies or make a diagnostic
51:33tool out of it, you have to standardize
51:35it.
51:37>> It's very difficult. And Norina and and
51:39Fer are doing they're really very um how
51:44to say they're very good at that. They
51:46really categorize sounds. They make
51:49tests to distinguish between several
51:51sounds, but there's such a huge variety
51:53and and sensitivity to sounds. It's more
51:56than than just about decibels.
52:00>> Thank you, Dr. Bose. I yield the I yield
52:02the floor.
52:04>> Thank you. Okay, just to remind you, um,
52:07when you raise your hand and David
52:10recognizes you, he will send you an a
52:13little note that says, "Please unmute
52:15yourself." Then you hit that little
52:17thing and you're m you're unmuted. So,
52:19Bonnie, hi Bonnie.
52:24Uh thank you so much for this
52:26presentation. It's very informative. Um
52:30so I have a pulsatile tinitus and
52:34earfulness and eardrum flutter that
52:38developed after a very aggressive uh ear
52:41cleaning to remove wax. M
52:44>> so my ENT
52:46uh has through testing diagnosed me with
52:50a patchulus ustation tube although maybe
52:54I think maybe I have TTS but but anyway
52:58I guess uh my next step in my treatment
53:01will be to put a patch in my ear. I just
53:04I just have it in in my right ear.
53:07>> Absolutely.
53:08>> Yes. So these are the local these are
53:10the local inputs.
53:13>> Yeah. So I wanted to ask whether you
53:17uh if you need to put the patch in a
53:20location on the tempanic uh membrane
53:24that you you cannot really see the whole
53:27membrane due to a narrow ear canal. So
53:30what do you do to address um if you want
53:33to put a patch in a particular location
53:36but you can't really see it?
53:38>> Oh, I can see it. We work with the
53:39microscope. Now these are interesting uh
53:44how to say these are interesting. This
53:47is the cluster of symptoms. [cough] So
53:50um your ENT is right and I think you are
53:52right also because I think petalist tube
53:55and TTS are two sides of one problem. Um
53:59the system your ear your middle ear is a
54:02resonance cavity and you can have some
54:05echoes coming up. All of us can have it
54:08our own voice, our own blood stream, our
54:11own steps. Um, but happily we're happy
54:15we have this system with TTVP that
54:18shield us from that. So the system
54:20filters all those body sounds unless it
54:23can't. So as long as it can and you can
54:26see that on the the device of Aronorina
54:29you see in many people you see uh heart
54:32rate and he says yes I I think it's hard
54:35I think is a muscle contracting to
54:38shield us from this heart sound. So if
54:42the system does not work anymore, you
54:44get into problems and a white uh ustaken
54:47tube is one of the problems that may
54:49cause uh echoes of your own voice,
54:52resonances of your own voice. So what
54:54does the body do? It it it contracts the
54:56tens of philip paralini in order to
54:59close this ustakian tube and
55:02it shields you a little bit from those
55:04resonances but you get fullness feeling
55:08you get fluttering you get tinus you get
55:10hyperus you get all those things because
55:11the system is designed to diminish
55:14internal sounds and to increase external
55:17sounds which is actually what happens in
55:19your case. So uh in some people TVP TT
55:23are contracting because of stress,
55:26anxiety, name it. But in people like you
55:30here, well it's always a mixture of of
55:32several things coming together. But here
55:35this open tube is a cause for TVP
55:38contraction. Now um in women it may be
55:42hormone uh a low hormone and it may be
55:45interesting to to try some hormone
55:47therapy. uh otherwise we put a patch. I
55:50always start with a patch and we see the
55:52whole tempanic memory is very simple for
55:54us because we work with a microscope and
55:56any ENT doctor can do it and I'll be
55:58very glad to to help your ENT doctor to
56:00send them some mail with explanation. Um
56:04uh the upper half of the tempanic
56:06membrane is is connected with the the
56:08neck muscles and the jaw muscles. The
56:10lower part is connected with these
56:12muscles. So by trying uh by by feeling
56:16the muscles I can in most cases know
56:19which location I have to do. It's
56:22connected with different nerves and so
56:23it's a very very beautiful system. Uh
56:27very special. Um so yes and sometimes
56:31it's not really clear. So I try one part
56:33and I tell people to come back the next
56:35day. If it's not a good result and then
56:37then I try the other part. But no it's
56:39very simple to do. Most ENTs are a bit
56:42reluctant because they think what
56:44strange thing is this never heard of it
56:46and uh and and and you know there are
56:50quite some patients uh with a lot of
56:53anxiety and and this makes physic
56:55physicians anxious also. Um they're
56:59afraid of trying unproven things on
57:02patients that may tell them it's worse
57:05and they don't feel secure. But if you
57:08can find an ENT that does tempanic
57:10patching, I'll be glad to help to to to
57:12give some explanation.
57:15>> Okay. Yeah, my my ENT he's he's willing
57:18to to do the patch. No, [laughter] no
57:21problem. But he just puts the patch
57:23whatever whatever location he can see.
57:27And I I had read your hypothesis about
57:31uh depending on whether it's dorsal or
57:35the the other location and I actually do
57:39have like a lot of like uh muscle
57:42tightness like with my trapezius and so
57:44forth and so I read that you would put
57:47the patch in a in a particular location
57:50but yeah my uh ENT just yeah he just
57:54puts the patch wherever he can see you
57:57know the the tempanic membrane because I
58:00have narrow ear canals. He can't see the
58:02whole tempanic membrane.
58:03>> Sometimes you can't see it. You cannot
58:05see the whole tempanic membrane.
58:06Sometimes it's difficult. Yes. Sometimes
58:09there's there's a bending in the ear
58:10canal and it's very difficult and then I
58:12just put it where I can. It happens.
58:15Yeah. Maybe it's that's the way in your
58:18case. Yeah.
58:21>> Okay.
58:21>> Okay. We'll go on.
58:23>> Thank you. That was that was so sweet of
58:26you to offer to share information. We
58:29don't always hear that from researchers
58:31and doctors. And thank you. Uh Sher,
58:33would you please uh either turn your
58:36video off or stop moving your hand in
58:38front of the camera? Sherry.
58:42Sherry, can you hear me? Okay, thank
58:44you. Okay, the next one on the list is
58:48Norman. David, can you unmute Norman?
58:50Norman, you're gonna get a little sign
58:52that says unmute yourself. Thanks.
58:58>> Unmute. There I am. Yes. Thank you very
59:00much, Dr. Boots, for taking the time to
59:03provide such an interesting information.
59:06I just want to clarify one thing. Did
59:08you say that um that hyperacusis, which
59:13I've got, uh can impact sleeping?
59:17Uh I I I'm having trouble sleeping also
59:21and I'm trying to work on that. So I'm
59:23trying to wonder whether they're
59:25related.
59:27>> Okay. Well, um
59:31I think it's about an uh attention
59:34system, an alertness system that's
59:36hyperactivated or hyper respponsive.
59:40But it has to do listening. You know,
59:42listening, we can listen in the dark. We
59:45can listen behind corners. we can listen
59:47in in in the mist. Uh listening is is
59:49like our radar. You know a marine ship
59:51with a radar and it helps us to detect
59:55dangers or opportunities.
59:57So listening is very much related to
1:00:00alertness, danger, anxiety, focusing
1:00:04behavior, uh all these that's
1:00:07biological. Our ears are connected to
1:00:09the inside. All the places that are
1:00:12connected related to attention. So
1:00:17the system is activated and at the end
1:00:19you don't know what was the chicken or
1:00:22was the egg. I don't know if you say
1:00:23that in English. You don't know what was
1:00:25the beginning, what was the result, what
1:00:27was the cause, what was the result.
1:00:28Everything influences everything. So I
1:00:30have patients many patients as you told
1:00:33also um who got tinitis or hyperis after
1:00:37period of stress
1:00:38>> figure something out.
1:00:39>> Um but I also have patients who said I
1:00:42was really chill. there was no problem
1:00:44in my life but since I got tinitis I
1:00:46feel that I'm getting more and more
1:00:47anxiety uh and sleeping problems so it
1:00:50can work in all directions the whole
1:00:52system gets more and more
1:00:53>> introduce those of you
1:00:58>> okay thank you very much
1:01:01>> okay who's next
1:01:05uh there's some things on the chat I
1:01:07can't read but if you uh put them in and
1:01:10want to ask they're all in French.
1:01:15Anybody? Oh, one thing I want to mention
1:01:18without fail is uh Oh, yeah. I didn't
1:01:22hear what you said, Dr. Boots. Did the
1:01:25Silverstein's uh surgery help you?
1:01:32>> Uh I haven't done many many surgeries. I
1:01:35I only started last year.
1:01:38Uh
1:01:40>> Oh, you haven't done Dr. Silverstein's
1:01:43uh
1:01:43>> yes I have done a few once a few once
1:01:45but not that many. I only do it I have
1:01:48been doing it for one year now. Uh I I
1:01:51did I don't know maybe six or seven
1:01:53patients and I my impression my first
1:01:56impression is that's like applying a
1:01:58cushion in the ear like applying a
1:02:01hearing protection inside the ear but
1:02:03same as our other methods I have the
1:02:05impression that it covers the problem.
1:02:08It diminishes the the symptoms, but I'm
1:02:10not sure that it cures the sensitization
1:02:12problem.
1:02:14>> Well, what I want to say is that he
1:02:16emailed me the other day and said uh
1:02:19he's got a new paper out and they've
1:02:22accepted it and he wants to come back
1:02:23and update us.
1:02:25>> So, we are trying to figure out when he
1:02:28can come back. It might have to be in
1:02:31January of next year because we're
1:02:34pretty much booked, but hopefully we'll
1:02:36get him. And I was just curious about
1:02:38that. Um, did you did you see the movie
1:02:43Tuner? We had a whole meeting on Tuner.
1:02:46Did that get to you?
1:02:48>> No.
1:02:49>> All right. It was a It was a a movie and
1:02:52it was a really great movie about a
1:02:55piano tuner that had hyperacusis and
1:02:58perfect pitch. And so some criminals get
1:03:01him to be a safe cracker. It was
1:03:04completely, you know, fake, but it it it
1:03:08brought hyperacusis into the world
1:03:12>> very recently. So, I just saw somebody
1:03:14else's hand up. Did I?
1:03:17>> No.
1:03:18>> Okay. Anybody else?
1:03:23>> Okay. What I want to do is I'd like uh
1:03:25to tell you that this particular meeting
1:03:29was a collaboration of myself and Jim
1:03:33Henry from Ears Gone Wrong and the board
1:03:36of directors of Hyperacusis Research and
1:03:40some of them are here tonight and I'd
1:03:42like you to just know who they are. One
1:03:45of them is John Wallace who's off video.
1:03:48Jim Henry,
1:03:50David Trareorgi,
1:03:52Ken D'vor, hi Ken, he's on camera.
1:03:56Kendore,
1:03:56>> hi.
1:03:57>> Who else we have here? Let me see down
1:04:00the list.
1:04:02Uh,
1:04:04oh, Steve was here before, but he left.
1:04:07Steve Baron, the president. Uh, I think
1:04:10I got everybody. What I want to tell you
1:04:12is that Hyperacusis research is an
1:04:16organization that raises money for
1:04:19research. There is no federal money.
1:04:21There is no anything NIH money or
1:04:24anything. They live by donations. And
1:04:27so, David, can you David, can you stick
1:04:30up the email in the chat if anybody
1:04:33wants to? is it's a m and uh another
1:04:36thing too if you've heard of you've
1:04:39heard of tinidis quest
1:04:42>> hyperacusis research has just
1:04:44coordinated with tinidis quest so
1:04:48we are hoping and hoping to cover
1:04:52everything
1:04:54did you maybe you didn't hear me well
1:04:56I'll send it out don't worry about that
1:04:59really really appreciate you Dr. boots.
1:05:02This was absolutely not too technical
1:05:06and we the more we my goal is to
1:05:11have everybody never walk out of a
1:05:15practitioner's office again sobbing when
1:05:18the practitioner says, "Sorry, nothing
1:05:20you can do for it. You'll have to learn
1:05:23to live with it." How many of us have
1:05:26walked out sobbing and that's not going
1:05:28to happen again? Okay, I think we have
1:05:30one more. Sherry, David, can you unmute?
1:05:34Sherry,
1:05:40>> there. There you go. No.
1:05:44>> Hi. Sorry. Uh, a few technical
1:05:46difficulties. Okay. So um would the
1:05:49patch and what type of patch is it work
1:05:50for pain hyperacusis which uh has a
1:05:53addendum of light sensitivity uh after
1:05:56years of being screamed at in a nursing
1:05:57home by the CNAs and residents and also
1:06:00most recently uh odor sensitivity
1:06:03primarily um uh marijuana and other
1:06:07street drugs not bleach which I did have
1:06:09and so forth. So um is there any patch
1:06:12or non-surgical solution that you could
1:06:14recommend or even an electronic
1:06:16simulation
1:06:18Uh the patch doesn't work for everybody
1:06:20and what it does in in patients with
1:06:22pain hyperact some it doesn't do
1:06:24anything and others it it decreases the
1:06:27pain with some 20%.
1:06:30But it's always temporary. You have to
1:06:33put it again and again. Um so I I often
1:06:36try it and and if it doesn't help well
1:06:39okay no harm done. Uh as for
1:06:43>> influence of marijuana I I don't know
1:06:46and that's not through my field
1:06:50>> can someone send me the patch
1:06:52information or or a copy of the chat and
1:06:54the end of the slides I was fascinated
1:06:56thank you so much sir
1:07:03>> who's unmuted there
1:07:09>> uh we I don't I'm not quite sure that we
1:07:13can make a copy of the chat, but I will
1:07:16be sending out the recording.
1:07:19So, you can watch it again. That
1:07:23I don't think I can get back to the chat
1:07:25with that. And uh
1:07:28All right, let's see if there's a new
1:07:30one. Okay, hyperacusis.org.
1:07:34Just the one word. Hyperacusearch.org.
1:07:38Wonderful organization. And I appreciate
1:07:41our collaboration.
1:07:43And uh anybody have a last word?
1:07:48Anybody have a last word? Dr. Boots, do
1:07:51you want the last word? Okay. Alice. Oh,
1:07:53wait. Oh, Alice. David, can you unmute
1:07:56Alice?
1:08:08just click the little thing that says
1:08:10unmute yourself.
1:08:13>> Um Alice doesn't have her hand up. If
1:08:15she can raise her hand.
1:08:21>> Okay, Alice.
1:08:25>> Okay. Alice wants to ask something.
1:08:27Don't Don't you, Alice? Okay. Yeah.
1:08:38David, can you unmute Alice? She She has
1:08:41her hand up now. Thank you, Bonnie. Glad
1:08:45you're here. Glad
1:08:47>> I'm not seeing her hand. I'll try to
1:08:49find her.
1:08:49>> Oh, she Oh, I see Alice. And she's go
1:08:52She's going like she's waving.
1:08:57>> No, she has to raise her hand and zoom.
1:08:59The yellow hand and zoom.
1:09:00>> Oh, can you hit the yellow the the
1:09:02little yellow hand, Alice?
1:09:05on the bottom on react.
1:09:09Look on react.
1:09:13Go click on react and hit that that um
1:09:19that yellow hand the wave cl. No, that's
1:09:21a clap, which is the one we want.
1:09:26I can't figure out which one we want.
1:09:31That's a wave.
1:09:34Which one is the hand, David? I see wave
1:09:37and clap. That's crazy.
1:09:40Maybe you can um It's It's a bar under
1:09:43the icons, right?
1:09:44>> Okay. You You should be able to hear me
1:09:46now. I can see.
1:09:47>> Oh, yay. Okay, there you go.
1:09:51>> I I am not sure. I feel it seems to me I
1:09:55do not have the neither hyper curses.
1:09:59Maybe something in the between.
1:10:02I get tired every if I go to restaurant
1:10:06any other any places I get tired in
1:10:08about 20 30 minutes and uh if I am even
1:10:14shorter time depends on the level of the
1:10:17noise. Uh this is caused by a serious
1:10:20brain injury
1:10:23which happened um about almost eight
1:10:26years ago. is just getting worse
1:10:29and I don't even know if there are any
1:10:32it is called by these symptoms this has
1:10:35a name or is there any treatment that's
1:10:38my question because I have not been able
1:10:41to figure out what to do about it I only
1:10:45use
1:10:46uh noise cancelling earbuds um and when
1:10:50I go anywhere then I can uh do not hear
1:10:54the noise to that
1:10:57It's from the company Bose company. I
1:11:00use this kind of noise cancelling but
1:11:03there is nothing I would know what I
1:11:05could do for myself.
1:11:07Yes, I I haven't heard it before being
1:11:10tired. I heard a lot of annoyance uh
1:11:12making somebody angry uh making somebody
1:11:15sad. I think it can do a lot of things
1:11:18uh depending on the output. So in your
1:11:20case it must be connected somewhere in
1:11:23your brain with an area that makes you
1:11:25tired. But I would
1:11:29you know when we hear something that we
1:11:31just try the same treatments and and and
1:11:33evaluation and we see what happens. I I
1:11:36would think maybe it would be similar to
1:11:38the to the annoyance hyperuse or pain
1:11:42hyperuse but on link to somebody else
1:11:45something else.
1:11:47Uh it was told me
1:11:50I when people start to have hearing aids
1:11:54usually with hearing aids you hear
1:11:56everything.
1:11:57>> Mhm.
1:11:58>> But the same is me. I can hear the bird.
1:12:02I can hear this kind of screaming. I can
1:12:05hear this. I can I hear all the noises.
1:12:08Not I would with the brain focus on
1:12:10certain certain talk. No I hear
1:12:14everything what is happening. I get
1:12:16tired.
1:12:18It It was told me I get tired because I
1:12:20hear everything. My hearing is going
1:12:23well. I hear well
1:12:25>> and I'm just protecting not to hear that
1:12:28much.
1:12:29>> Is there any is there a name to it or is
1:12:32just you don't know this at all?
1:12:34>> I don't know this at all.
1:12:36>> I do.
1:12:36>> I would like much I would very much like
1:12:39to to treat it and see what happens but
1:12:42I can't tell you now. Sorry. I know
1:12:44there's a name for it because I was
1:12:46involved in a hearing loss organization.
1:12:48It is called auditory fatigue.
1:12:54>> Auditory fatigue
1:12:55>> fatigue then you are
1:12:59trying
1:13:00to hear people's conversations and you
1:13:03can't hear them as well. It's exhausting
1:13:06and it's called auditory fatigue. Go
1:13:08ahead and look it up, but it's really
1:13:10common.
1:13:12uh a fatigue is something that everybody
1:13:15has after a few hours listening but so
1:13:19this is then an a very how to say
1:13:22immediate auditory fatigue after 20
1:13:25minutes this is impressive
1:13:31>> is there anywhere I could go I live uh I
1:13:35live in Chicago
1:13:37>> and is there a way to
1:13:40contact some organizations if they would
1:13:43somehow could help me.
1:13:46>> Uh the only ones I know in your
1:13:48neighborhood are Philip Fier and is but
1:13:51they're doing research. They're not
1:13:53doctors. They're doing research on all
1:13:55those strange uh symptoms and I think he
1:13:59will be very much interested in uh
1:14:01examining your hearing. Uh Laval
1:14:05University in Quebec, but they're not
1:14:07doctors. Uh, and as for doctors in the
1:14:10United States, I don't know.
1:14:12>> I can tell you,
1:14:15>> Alice.
1:14:16>> Yeah.
1:14:16>> Um, Jim Henry has a list of providers
1:14:22that he knows about in every si in he
1:14:26doesn't have every city, every state,
1:14:29but he's got them by state. So, you said
1:14:32you lived in Illinois, in Chicago.
1:14:35>> Why don't I get you the list? Do you um
1:14:39will you my email are you on my list
1:14:41serve?
1:14:42>> Yeah, I can I can email you.
1:14:44>> Okay, it's on the chat and I will get
1:14:47you the list at least for
1:14:50p practitioners that he knows about and
1:14:53has looked into. It is extremely hard to
1:14:57find anybody in any city you live in.
1:15:00But I I will get you that list. What is
1:15:02your last name, Alice?
1:15:05Uh, like forest without the s. For f
1:15:09like in Frank. O R E.
1:15:12>> Forest.
1:15:13>> Okay. Foret.
1:15:16>> Got it.
1:15:17>> Okay.
1:15:19Thank you.
1:15:20>> Thank you.
1:15:22>> Okay. Um, I think Floyd is next. Floyd.
1:15:25Our friend Floyd. David, can you send
1:15:27your little note to Floyd?
1:15:31Are you okay with this timing, Dr.
1:15:33Boots? Yes.
1:15:35>> Are you okay standing?
1:15:36>> I have to leave. I have to leave. I
1:15:37think in
1:15:39>> 1930 I should stop but it's okay.
1:15:42>> So tw 10 minutes maybe. Okay.
1:15:45>> We appreciate this so much and we love
1:15:48it when we don't want a guest to leave.
1:15:51>> Okay. Floyd.
1:15:52>> Yes. Hi. Can you hear me?
1:15:54>> Yeah.
1:15:55>> Yeah. I'm I'm sorry. I I missed the the
1:15:57beginning part of this meeting. Is there
1:16:00a way I could uh see it from the
1:16:02beginning? Is there a way you could send
1:16:04it to me?
1:16:06>> I'm sending it out tomorrow morning. I'm
1:16:08sending it out tomorrow.
1:16:09>> Okay, cool.
1:16:10>> We are recording it and so I will send
1:16:12it out to my list served tomorrow and
1:16:14you're on it.
1:16:15>> Okay, good to go. Thank you very much.
1:16:17Sorry about
1:16:23>> Oh, is that it? Okay.
1:16:24>> Yeah, that's it. Thank you.
1:16:25>> Okay. Uh Paul, I think Paul is in the
1:16:29other three speak spoken. I'm sorry, my
1:16:32brain is a little fried. Uh, Paul M,
1:16:35David, can you uh send your little note
1:16:37to Paul M.
1:16:39>> Hello. Can you hear me?
1:16:42>> Mhm.
1:16:42>> Yes.
1:16:43>> Oh, quick question. You talk about
1:16:46neuroplasticity. I've been dealing with
1:16:49tenitis for about 10 years now and I
1:16:52just started using lace AI for my
1:16:56hearing aids and it teaches you to
1:17:00listen u listen to people speaking with
1:17:05background noise and it's I don't know
1:17:07if you're familiar with it or uh heard
1:17:10of it at all but I was just curious
1:17:12about because I just started with it
1:17:14whether
1:17:16That's using neuroplasticity in the
1:17:20proper direction.
1:17:23>> Oh, the use of hearing aids. You mean
1:17:29um
1:17:31I I think neuroplasticity as I see it is
1:17:36in in in in this subject is towards more
1:17:41relaxed or more active state. active in
1:17:46the sense of more vigilant, more alert.
1:17:51So I think it's mostly the state of mind
1:17:56that if you feel that the world's okay,
1:17:58you're calm and relaxed and things
1:18:01happen then you will go in a direction
1:18:04of more relaxedness.
1:18:06If you feel the world is dangerous,
1:18:08chances are that any triggers
1:18:11may put you in a direction of more
1:18:14alertness, more vigilance. Uh again,
1:18:18this has not been proven. These are
1:18:19ideas and and these are things that I I
1:18:22think uh we want to to do research on.
1:18:27Um but
1:18:30that's all
1:18:32I think at this moment. I think there is
1:18:35about it. I have talked to someone with
1:18:38pain hyperactis, an Englishman who said
1:18:41that it um it cured from itself
1:18:45spontaneously and it had become better
1:18:47over months and I noticed that he had a
1:18:50very positive mindset.
1:18:54Um but okay, I'm not sure from one
1:18:56person if that's that important.
1:19:00Um
1:19:00>> great. Thank you. But it it it is it has
1:19:03not been proven all all these things
1:19:05that I say. But um I think there's
1:19:08something we might
1:19:10go for as it seems plausible from a
1:19:12biological point of view. Yeah.
1:19:17It's not not been proven. These are
1:19:19ideas. These are ideas.
1:19:23>> Great. Thank you.
1:19:24>> Okay. Uh we have not heard from Vicki
1:19:27yet. We've heard from other people.
1:19:29David, can you unmute Vicki? Hi Vicki,
1:19:32glad you're here.
1:19:40>> I just have a quick question for
1:19:42everyone and for the doctor. Thank you
1:19:43so much for a great presentation. Does
1:19:46anyone or you can tell me anything about
1:19:48the TMS is the transcranial stimulation?
1:19:54>> Uh I have no experience. I know that has
1:19:56been done for depression and and that it
1:19:57has some use. Um I know that um
1:20:04for hyperacus and tinitus as yet I have
1:20:06not really heard about spectacular
1:20:09results. So I assume at this moment no
1:20:12but I'm not really into that.
1:20:14>> Oh okay. because I have a an appointment
1:20:17next week coming up and I was wondering
1:20:19if anything on the chat here had it on
1:20:23because I do have tinitus and
1:20:25hyperaciosis and the sleeping problem
1:20:27that I have is horrible. I was doing
1:20:30clonipan and I'm trying to get off of
1:20:33clonosipan and the way that they were
1:20:36tippering off you know actually kicked
1:20:39the tinitus actually worse.
1:20:42M
1:20:43>> so
1:20:44you know I was in two migrams and then
1:20:47went down I I I assume too quickly to.5
1:20:53>> and it got my tinitus absolutely to the
1:20:57roof.
1:21:00So, so this tinitus and hyperacusis is
1:21:03part of a much larger thing with uh the
1:21:06whole brain um uh doing something in
1:21:11always in the sense of alertness,
1:21:13vigilance, attention and um all this
1:21:16medication works on that and we also use
1:21:20TDCS which is electrical stimulation not
1:21:23for the tinitus itself but to prepare
1:21:25patients for the therapy Because we feel
1:21:29that as long as they don't sleep, as
1:21:31they are hyper anxious, we cannot do
1:21:34anything. And even if I inject Botox,
1:21:37Botox is is less strong than the mind.
1:21:39As long as their mind is activating the
1:21:43system, as long as their mind is
1:21:45dictating these muscles to contract, I
1:21:47cannot do anything. So yes, we use TDCS.
1:21:51I know that TMS is used. Uh there are
1:21:54many things. Um and I think these can be
1:21:57interesting to prepare patients and then
1:22:00it's the physiotherapist who has to calm
1:22:03down their muscles and then we have
1:22:04those research things with with
1:22:07bivvakine botox and so on um which
1:22:10actually would hopefully cure the
1:22:14tinitus itself then in some cases
1:22:17>> preparation is very important sorry
1:22:19>> do you know anyone in Los Angeles that
1:22:21does botox because I can I don't know
1:22:24anyone Do anybody knows?
1:22:27>> I heard of someone who doing who was
1:22:29doing it. Um,
1:22:33>> no. Right, Trudy? You know everything.
1:22:35Truly,
1:22:38>> I should have a look. Somebody told me
1:22:40about someone doing Botox there.
1:22:43>> I'm not sure.
1:22:45>> Okay,
1:22:45>> I guess you'll have to call around.
1:22:48>> Thank you.
1:22:48>> We have time for one more question and
1:22:52that's going to be Joy. Hi Joy.
1:22:56That's gonna be the last question
1:22:57because we do have to let him leave.
1:23:00>> Okay.
1:23:00>> Unfortunately.
1:23:02>> Okay. Can you hear me?
1:23:05>> Yep.
1:23:06>> Yep. Okay. So, I this is um I'm
1:23:09wondering if you can tell me anything
1:23:11about a cure for autophany.
1:23:15>> Oh, yes. Uh autophagy is I I I find it a
1:23:20very interesting thing. Uh so the
1:23:22classical
1:23:24diagnosis of autophonyy is or or petus
1:23:27tube or uh turbo which means dehissance
1:23:32of superior single circular canal or
1:23:34which is very very rare incraanial
1:23:37hypertension. So your intracanal fluid
1:23:41has doesn't have the right tension but
1:23:43that's very rare. So actually what you
1:23:45do you do a CT scan to rule out the
1:23:47hissence and then you say okay it's a
1:23:49petalist tube. Now what I found is that
1:23:52this petal tube may have several causes.
1:23:56One of them is hormonal especially in
1:24:00women after the menopause and uh I see
1:24:04it very often in in women and uh another
1:24:08one is subconscious
1:24:11contracting of muscles. So again from
1:24:15psychological point of view people who
1:24:17really are stressed and contract these
1:24:20muscles and they without knowing it open
1:24:22their tube. So what I often do is just
1:24:25give them some 10 days of some relaxing
1:24:27medications and I've had people who were
1:24:29better with that. Um if that does not
1:24:33help if hormonal therapy does not work I
1:24:36put a patch on tempanic membrane. It
1:24:38helps sometimes. uh uh we put a grommet
1:24:42a tube in the ear. Sometimes it helps
1:24:44sometimes it wors then we remove it and
1:24:46if nothing nothing helps then then we
1:24:48operate it. We we inflate some filler in
1:24:50the ust tube which can be done um but
1:24:55the results only 60% of good results in
1:24:58in in my experience. Uh so I I I first I
1:25:02try some things. I I try some things
1:25:05psychological hormonal patching and then
1:25:08if nothing works uh physiootherapy even
1:25:11nothing works and I I do surgery.
1:25:14>> Oh thank you. And which which hormone is
1:25:18most effective?
1:25:20>> I think it's estrogen but I'm not so
1:25:22good in hormones. I sent people to the
1:25:24gynecologist or or uh or general
1:25:28practitioner. Um
1:25:31I think it's is too gel or something.
1:25:33Not sure.
1:25:34>> I can't find anybody who's even heard of
1:25:37autophony. They think I'm making it up.
1:25:39>> So, okay. Thank you. Thank you. I
1:25:42appreciate your help.
1:25:44>> Okay.
1:25:45>> I just had to look it up. I had to look
1:25:48it up, Joy. I didn't know what it was. I
1:25:51thought everybody hears everything in
1:25:52their body all the time. So anyway,
1:25:57thank you so much. We do have to let him
1:25:59go and I Dr. Boots, I appreciate you
1:26:02being here so much. You will get a
1:26:04recording tomorrow sometime. And uh you
1:26:08feel free to send it out to everybody.
1:26:10You're getting a lot of love.
1:26:13>> Thank you very much. It was very it was
1:26:14a pleasure. a lot of love here and we
1:26:16appreciate you so much and thank you so
1:26:20much for being here.
1:26:22>> Thank you
1:26:22>> and everybody thank you all for coming.
1:26:24We had a great group and more to come.
1:26:28There's always a lot more to come from
1:26:30us. We are not let we are going to
1:26:32educate you. So you know when you walk
1:26:35into a practitioner's office you pretty
1:26:38much know more than they do. So thank
1:26:41you everyone.
1:26:43Bye.
1:26:43>> Thank you.
1:26:45>> Thank you, Trudy.

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