S.7/E.9 

Hyperacusis

Hyperacusis is defined as a collapsed tolerance to normal environmental sounds. Ears also lose most of their dynamic range.  Dynamic range is the ability of the ear to deal with quick shifts in sound loudness. Suddenly everyday noises sound unbearably or painfully loud. The disorder is often chronic and usually accompanied by tinnitus (ringing in the ears), but can occur in patients who have little or no measurable hearing loss.

Hi, My name is Jemma, I’m  16 years old and have a rare disorder called hyperacusis, which causes me to experience pain from normal noise. There is very little research done on hyperacusis, and no laws or policies to provide accommodations to those living with hyperacusis. My goal is to help raise awareness about hyperacusis and other rare disorders/chronic pain conditions, put in place laws to accommodate those with hyperacusis, and push for more research to be done on hyperacusis. I have started a website, Instagram, Facebook, and YouTube called a Hyperacusis Awareness.

s7e8 Hyperacusis

 

Lita T  00:10

Hello, and welcome to another episode of podcast dx. The show that brings you interviews with people just like you, whose lives were forever changed by a medical diagnosis. I'm Lita, Ron is not here with us today.

 

Jean  00:24

And I'm Jean Marie.

 

Lita T  00:26

Collectively we're the hosts of podcast dx. On today's show. We're speaking with Jemma Tiffany Rosewater. Jemma is a student. And in her quest to raise awareness about hyperacusis, and other rare disorder, chronic pain conditions, she would like to push for more research to be done, and have laws passed to accommodate those with hyperacusis. She started a website, Instagram, Facebook and a YouTube channel called a hyperacusis awareness. I mean, I've got to hand it to you. You are a dynamo already and I haven't even met you in person. And if we haven't already said it enough, she is joining us today to talk about hyperacusis.  Welcome to the show Jemma.

 

Jean  01:16

Hi, Gemma.

 

Jemma-Tiffany Rosewater  01:18

Thank you so much for having me.

 

Lita T  01:20

Oh, it's our pleasure. And Jemma, could you start out by telling our listeners what exactly is hyperacusis.

 

Jemma-Tiffany Rosewater  01:30

So hyperacusis is rare a and painful hearing disorder that causes people to experience physical pain from normal everyday sounds. There are different degrees of severity some people have mild hyperacusis and some people have very severe hyperacusis. symptoms can also vary. Some patients also have tinnitus spikes or vertigo. Some patients can get migraines from the noise. And it takes very severe hypothesis can be a very life changing debilitating condition.

 

Lita T  02:14

I'm, I'm sorry to hear this what (what) symptoms led you to your diagnosis?

 

Jemma-Tiffany Rosewater  02:21

Well, when I was around six, really loud noises like a cafeteria or assemblies and stuff. Were painful, just from my ears, I would wear earplugs and I was able to be okay with that until second grade, I started getting really bad. migraines and then every little sound started giving me triggering my migraine attack. And they at first they just said I had chronic migraines. And then in the third grade our mom took me to see an audiologist and then he diagnosed me with hyperacusis.

 

Lita T  03:12

Wow.

 

Jean  03:13

Well, that's a lot to take in.

 

Lita T  03:14

Yes, for sure. So, so the symptoms themselves, they weren't enough to make the diagnosis, you had to go and have some testing at an audiologist, what exactly did they do to test you for this?

 

Jemma-Tiffany Rosewater  03:29

Um, I believe at the at the time they took and hearing test and then they just kind of had me describing my (my) symptoms. And so that's how they made the diagnosis of hyperacusis. Unfortunately, that doctor was only has been audiologist or familiar with the desensitization protocol. And back. That was eight years ago, there was not very much research done on pain hyperacusis which meant it from most of my life until about the past year and a half. I've kind of been subjected to a lot of very painful treatments that have worsened my condition

 

Jean  04:26

Oh I'm so sorry

 

Lita T  04:27

You're saying that they used to do sensitization. So in other words, they tried to expose

 

Jean  04:34

exposure

 

Lita T  04:34

 to more sound in order to try to fix it.

 

Jemma-Tiffany Rosewater  04:38

Yeah.

 

Lita T  04:39

Oh, that's horrible. I'm so sorry that you went through this.

 

Jean  04:42

Yeah,

 

Lita T  04:43

that's terrible. I can't even I can't even imagine. But you know what...

 

Jemma-Tiffany Rosewater  04:50

yeah, it was very painful.

 

Lita T  04:52

Yeah, I would imagine.

 

Jean  04:54

I'm glad that there you said in the past year, you know,

 

Lita T  04:58

come up with some thing

 

Jean  04:58

come up with some things in I guess medicine every year. You know, there's (there's) growth in medicine and hopefully change in medicine and we're learning more about the human body. But yeah, I too, I'm so sorry to hear that. Do they know what the underlying cause is for this condition?

 

Jemma-Tiffany Rosewater  05:16

Um, they do not. I'm actually in contact with two researchers, Paul Fuchs. And Dr. Fan-Gang Zeng. And I've been reaching out to some other scientists right now they have hypothetical mechanisms, three hypothetical causes for the pain. The first is Paul Fuchs recently discovered that the cochlear has these type two neurons that are actually pain fiber that had previously been overlooked? Because there's only 5% of the cells?

 

Jean  06:04

Wow.

 

Jemma-Tiffany Rosewater  06:05

Yes. And so they think that in some people, need over activation of those cells and under activation of the type of ones because many people have hyperacusis, including myself in noisy environments, are also unable to understand our not able to understand speech. And so that has to do with connectivity of type ones, and that that could possibly be a cause for pain hyperacusis. The other possible cause they're looking into is some of the muscles and bones in the middle ear, which are actually they just discovered a link between those and the trigeminal nerve, which would explain why me and so many other patients experienced migraines and heavy facial pain from the knowing. And then the third possible cause they're looking into is once the auditory signal reaches the brain, that it may be going to some of the wrong cortexes, such as the pain cortex, or other cortexes, which could contribute to how some patients lose their bowels bounce or have seizures for different types of things from noise.

 

Lita T  07:30

I see. I see. Okay,

 

Jean  07:31

that makes a lot of sense.

 

Lita T  07:32

Right.

 

Jean  07:33

 And we have spoken with individuals with trigeminal neuralgia before. And that is, you know,

 

Lita T  07:41

a horrible pain as well

 

Jean  07:42

 Oh, yeah. That's a horrible pain as well. And I adding that upon your additional pain? I'm yeah. That's difficult. That's very difficult. I'm glad that they're doing more research and that they'll continue to do research.

 

Lita T  07:55

Definitely. Do. I know we weren't going to ask this. But do you live in a large city that has, has access to research like this? Or do you have to travel far to get that?

 

Jemma-Tiffany Rosewater  08:08

Well, I'm for the most part I live in in between Baltimore and Washington, DC.

 

Lita T  08:18

 Perfect.

 

Jemma-Tiffany Rosewater  08:18

 Are we? Yeah, we live in like that Howard County area. So we do have access to Johns Hopkins and other hospital. For the most part, though. I've reached out to a lot of the research scientists online or phone calls.

 

Lita T  08:41

Okay. You're very you're very wonderfully talented young lady. I think you're going to go far in this world.

 

Jean  08:48

Absolutely

 

Lita T  08:49

 So we're going to see your name. We're going to see your name somewhere. Because just the steps that you've taken already to try to find a cure and everything that goes way beyond your years.

 

Jean  09:02

Advocating, Yeah.

 

Jemma-Tiffany Rosewater  09:04

Thank you.

 

Lita T  09:06

Jemma, have you heard? Probably not had had you heard of hyperacusis before your diagnosis, and do you know anybody else with it like family or friends?

 

Jemma-Tiffany Rosewater  09:17

So I had never heard of that word. Before I started getting pain from sound. My family had never heard of it. Now that I have it, actually. The unfortunate thing was that when I was younger, I did not know anyone who had hyperacusis I did not even know anyone until I was nine who had any type of chronic pain condition. In town, my TVI who had one teacher of the visually impaired students. And then when I was 12, I had the opportunity to meet a young woman from Delaware, who she had not unfortunately been diagnosed that she had, that she got pain from sounds, but when she was growing up, they didn't even recognize it. And they thought it was just mental illness. I now, when I was 13, I joined a support group on Facebook hyperacusis research and support. And I have managed to meet a lot of other amazing advocates with severe hyperacusis. As well as through my website and my social media to raise awareness, a lot of people have reached out to me, so I'm trying to also one of my big things is to put in place. This is the other reason I've been reaching out with researchers to different things, established clinical guidelines in the medical community to protect patients who report noise induce pain, including on the pediatric level, and to increase communication between the research doctors and clinicians so that they're more up to date on new research, and I'm also trying to put in place support programs for people who have hyperacusis so that they can speak with other people who have it, I started the patient education and support program to connect people who have been living with it for a long time. with people who are new to it.  I have a secret team group that I started because I noticed that there wasn't groups specifically for teens or young people with the condition and then an education accommodations training for people who have a close relationship with someone who has it.

 

Lita T  12:22

Well, that's wonderful.

 

Jean  12:23

Wow, you were very, very busy. Abd how has your healthcare team how have they can they treat deserve a treatment for this condition? Or how have they approached it? And they said, in the past, the approach was probably

 

Lita T  12:40

Not what you needed

 

Jean  12:41

right not, not what you needed, but what is the their current approach.

 

Jemma-Tiffany Rosewater  12:47

Right now there's not really much because there isn't an earlier treatment or cure for this so they're not they're kind of just we're kind of just managing from day to day, just trying to make things as quiet as possible or using different types of use different types of electrical nerve stimulation devices, like  Tens, separately to try to manage the pain. But right now, there's not too much that they can do at the moment. And unfortunately, a lot of the research my doctors are aware of it because I've kind of made them aware of it myself. When I was a kid Actually, I started doing research when I was my own research when I was eleven. And I would write research papers to my doctors

 

Lita T  14:00

and do noise cancelling headphones help at all.

 

Jemma-Tiffany Rosewater  14:04

They help someone I do have noise cancelling headphones as well as earplugs.  Even with the headphones or ear plugs I'm still not able to do things like this one of my microwave is painful or music, or like my phone. I have it set on a flash or running bathwater different things are still painful for me.

 

Lita T  14:38

Wow. Wow, that's terrible.

 

Jean  14:40

Yeah.

 

Lita T  14:41

 And I know that that you're part of the bill that you're trying to get passed is so that you can do distance learning because your (your) school wouldn't allow it is that correct?

 

Jemma-Tiffany Rosewater  14:59

So I am trying to get a bill passed called "Title Six Telepresence and High Level Sensory Modification" would definitely cover my school and not just schooling, but it will cover work and any place of public accommodation.  Our County, before COVID-19 did not do distance learning. COVID-19 was kind of proved to them that it is possible. So I have actually reached out to the director of our town's Department of Special Education, who I had a previously established a relationship with to let her know how it has benefited me. And I've got an article on our school newspaper about how to benefit chronically ill students. The bill that I'm working to try to get passed would basically require that all services, I actually wrote this up the preamble and everything. And I've met with Senator Ben Cardin 's office, as well as Senator Chris Van Hollen’s office to ask them to introduce it to Congress. And I have a meeting later this week with Representative Kwiesi Mfume, to ask him to do this thing. And the short version requires that all services, facilities and activities either provide a person who has a condition who would otherwise be in pain, Ill upon a will to participate, due to a sensory and other environmental factors with either a virtual option that online accessibility standards, modify the sensory, other environmental factors to meet their needs, or provide them with a separate specialized environment to meet their needs.

 

Lita T  17:03

Isn't that a shame that the American with Disabilities Act didn't just take care of all of this for you?

 

Jemma-Tiffany Rosewater  17:10

Oh, yeah it totally should have I agree,

 

Lita T  17:14

that's a shame that you your condition, and I'm sure a lot of people that are in your, your boat, just got left behind? It's a shame. I'm glad. "HOOOAH!" I mean, you're doing such

 

Jean  17:26

sorry, that's a military thing.

 

Lita T  17:27

Oh, I'm sorry.

 

Jean  17:28

We're thankful that there are people like you out there advocating for others, and also just, you know, making change happen. So thank you. And yeah, that's amazing. I'm sorry that it took COVID to show them that it's possible. And, but maybe they you know, that that's the impetus, and that'll make everything a little bit easier. And we're looking forward to hearing from those senators and representatives to find out what they're going to do to try to push this bill forward. Have you had any support during this journey? Friends, family, medical caregivers, teachers?

 

Jemma-Tiffany Rosewater  18:13

Um, so Yes, I, umm my mother, even she's always been there for me. And she (she) does a lot of things. Like she drives me away from when the power, any power tools. And I have several other conditions in addition to my hyperacusis and whatnot. Now, when I was younger, oftentimes, because of a lot of the misinformation that was around at the time, it was more so lack of information about hyperacusis, she (she) did go along with the allows the things the doctors were saying, like she said, though, she wasn't trying to harm me, though, I have hard to see that at the time. It was what they had thought was truly helpful. She now though, said she always believed that I did get pain. That was one of the things a lot of people do not. And then other people who have been big for me are one of my vision teachers, I think I mentioned her before, before I knew anyone had hyperacusis, she was the first person I met, who had some type of chronic pain. And then some of my mentors who are visually impaired Also, low vision legally blind. They've been such as Melissa and Mrs. Sharon. Very helpful and supportive as well. And my, my grandmother, she lets me go and have underground basement and always would let me come to her house. And keep me when my mom was going traveling. I'm not able to travel.

 

Lita T  20:36

Yeah, that's got to be yes. Got to just be a lot of a lot of difficulty in your life. I was just thinking when you were talking about the basement for your grandmother. Things like fireworks. I mean, that's got to be horrendous.

 

Jemma-Tiffany Rosewater  20:51

Yeah. On the fourth of July, we she fortunately lives in a cul-de-sac which is mostly has older people and try stay down in the underground basement on the Fourth of July, we always go over there.

 

Lita T  21:08

Right

 

Jemma-Tiffany Rosewater  21:10

Yeah, to try to get away from the fireworks.

 

Lita T  21:12

Yes, that's good.

 

Jean  21:14

In gym, how common is this condition.

 

Jemma-Tiffany Rosewater  21:19

So one in every 50,000 people is diagnosed with it. However, as I found out from a lot of people who found my Instagram page, and also my friend, Leila, who she was the one who actually has never been diagnosed. And she tries to connect with a lot of kids have different types of rare, or painful conditions. She said, a lot of people are either not diagnosed or misdiagnosed, and they can have very severe hyperacusis where they're in pain. But most people have never most medical field has never heard of it. And so it's often misdiagnosed as just an anxiety or OCD, somehow depression, ADHD, autism, or different conditions like that. One of the other things I'm trying to do is I submitted a proclamation to my governor, and we're having different people in our hyperacusis group submit to the governor's in different states to have February 6 to the 13th, declared Hypoacusis Awareness Week, which we're hoping would help, in general, raise more awareness about the condition.

 

Lita T  22:57

That's great. That's great.

 

Jean  22:59

We'll make sure that we put on our calendar,

 

Lita T  23:01

definitely we are Yeah. Yeah,

 

Jemma-Tiffany Rosewater  23:03

 Thank you

 

Lita T  23:03

 well, we'll definitely make note of it on this end.

 

Jean  23:06

Mm hmm.

 

Lita T  23:08

 I had a strange question. Can you tell the difference between hyperacusis and let's say an ear infection pain?

 

Jemma-Tiffany Rosewater  23:19

Um, I haven't really had an ear infection. However, I think the main difference would probably be that the ear infection unless the person has hyperacusis shouldn't not be made worse. By noise or to have the pain seems to be directly associated from sound, that will be hyperacusis.

 

Lita T  23:51

Right? I was just kind of curious if it would be worse. All right. And what (what) do you wish people knew about hyperacusis? And what can everybody do to help people with this condition?

 

Jemma-Tiffany Rosewater  24:08

I wish that people knew that people with hyperacusis are in real pain, it's not all in their heads. And that the best thing you can try to do two things, try to get to know the person's needs in terms of noise and provide them with an environment or situation that is not going to cause them pain. And number two, I would say would be to try to be empathetic and understanding. You know, don't call them crazy or that they're overreacting or too sensitive that on top of all of the physical pain that are dealing with that's very emotionally hurtful?

 

Lita T  25:11

Absolutely, absolutely. We have found out to many of our interviews that there are many hidden illnesses that people suffer with that they're just not obvious. It's not that, you know,

 

Jean  25:26

you might not be able to recognize,

 

Lita T  25:28

right, you can't see it, but it's there. And it's serious and, and people just need to be a little bit more empathetic.

 

Jean  25:35

That's great advice. Thank you.

 

Lita T  25:37

Thank you. Thank you, Jemma. And Jemma, do you have any advice for someone that was recently diagnosed with hyperacusis?

 

Jemma-Tiffany Rosewater  25:46

Yes, my advice would be, you are the expert in your body, not necessarily the doctors and to do your own research and know, one there is not a lot of information about hyperacusis out there right now. And number two, to listen to your body, if something is painful or hurting you a treatment or situation to listen to your body and go with that, and do what you need to do in order to protect yourself.

 

Lita T  26:27

That's actually wonderful advice. Great advice. Well, thank you very much for joining our show today, Jemma, and due to your condition, we're not going to go through our show credits that we normally do at the end. We'll just end it here. And we'll, we'll patch in later. Yeah, our editor can patch in the ending after this.

 

Jean  26:49

But our listeners are going to want to know how can they learn more about you, and this bill and other support.

 

Jemma-Tiffany Rosewater  26:58

So you can check out for more information about the work, I'm doing for hyperacusis awareness and some of the different support programs that I have set up or the bills or projects, you can check out hyperacusis, it would be h T.T.

 

Jean  27:35

Okay. And we'll make sure we have links for everything on our website as well. Okay.

 

Jemma-Tiffany Rosewater  27:42

So, h t t, p, s, colon slash slash, hyperacusis, which is HYPERACUSIS awareness.wordpress.com backslash. And then if you want to find more of the because I'm not necessarily a research, cause I follow and worked very closely with hyperacusis research and President Brian Pollard, hyperacusis research, and that would be I guess they can Google Hyperacusis Research , hyperacusis research.org

 

Lita T  28:41

Okay. That's great. I'll put a link for that on our website as well.

 

Jean  28:46

And then I wouldn't, I just had one more question. When we spoke with someone with trigeminal neuralgia and someone who had phantom pain from (from) limb loss or quadrate, quad amputee, they both said that they had tried ketamine and that had assisted with their pain as well and it's something that they did they went in during a hospital stay. They the ketamine was administered, and but because of the nerve pain is such a hard thing to deal with. Have you ever tried that or is that something you might try in the future?

 

Jemma-Tiffany Rosewater  29:25

I have never heard of that before, is that a drug?

 

Lita T  29:29

 Yes, it is a drug and it's an intravenous drug. They only do it in the hospital.  You have to be hospitalized for it. And we spoke with him now. I cannot I always pay him. The Quad amputee Oh Travis Mills. Travis Mills, He has a movie up on Amazon about what he's been through. He said that the pain was so horrendous that he really had difficulty getting data getting through day to day. And the ketamine, the experience was very hard because it is like a psychoactive drug. So it does have unusual side effects while you're getting

 

Jean  30:14

while it's being administered, so you might have hallucinations and similar things. And he said it was horrifying going through that. But he said it was the best thing he's ever done. Because afterwards, his nerve pain was significantly reduced. And we heard comparable things from Pam about hers. And she has trigeminal neuralgia, right, which is considered, you know, a terrible, terrible pain, which in hearing that it's related to this condition is I, you know, I can understand that. But that might be just something that to think about.

 

Jemma-Tiffany Rosewater  30:46

All Yes, I'm actually pulling up on information about this right now. I've never heard of it. Oh, well, we've

 

Lita T  30:55

We've been learning, we've been learning quite a bit.

 

Jean  30:57

Little bit by little bit

 

Lita T  30:59

The last couple of years, at least, you know, of speaking with people. And that's the goal of our stories, is to share information. And, you know, every person has a story, and this story might help somebody else. And that's what we're hoping that we can do.

 

Jemma-Tiffany Rosewater  31:14

Oh, yes, I would love, I would hope that my journey, living with hyperacusis would definitely be able to help someone else. That's really what I want to do.  Especially I want to try to befriend and mentor younger kids who have my condition.

 

Lita T  31:38

You're an amazing girl, you really are

 

Jean  31:40

you really pursue a career in teaching or medicine.

 

Jemma-Tiffany Rosewater  31:44

I actually want to be a writer and author. So I just finished the rough draft of my first novel, Alien Princess, which actually my main character has hyperacusis, when we're working editors, right now. To edit it, and then I'm going to indie publish,

 

Jean  32:16

okay.

 

Jemma-Tiffany Rosewater  32:18

 And I'm part of something called young (young) writers workshops on learning all about publishing, and whatnot. In addition to that I'm trying to build some of my career in advocacy I want to do is called author community, which is where I sell my book, make money and also to other services, such as being paid to write articles or submissions, I was paid to write an article about distance, virtual access, we need to continue after COVID-19 for a literary journal, and then offering like writing, tutoring, and then virtual speaking services in addition to books.

 

Lita T  33:11

Excellent. Excellent.

 

Jean  33:14

There's a whole bunch of stuff. Are you part of the WEGO Health Group?

 

Jemma-Tiffany Rosewater  33:19

 I am,

 

Lita T  33:21

okay,

 

Jemma-Tiffany Rosewater  33:21

my great friend, Marie, told me about that

 

Jean  33:25

super super. And there's just you're reminding me, there's a series of books that are kind of a subject matter can be a bit risqué, but it's called Red Sparrow, and they actually made it one of the books into a movie, but what they left out of that was that the main character has synesthesia. And so she's a spy with synesthesia, and she utilizes that what some people would call a disability to her ad to, to help her in her work. And it's kind of that's what makes the book fascinating. So we're very excited. We look forward to reading your writing.

 

Lita T  34:12

Yes, we're going to have to get that book

 

Jean  34:14

 Absolutely. Let us know. And we will definitely buy a copy.

 

Lita T  34:17

Definitely.

 

Jemma-Tiffany Rosewater  34:18

 Okay. Thank you. Yes, I will. let you guys know. I think you guys already followed both of my casts.

 

Lita T  34:26

Yes

 

Jean  34:26

Yeah, we do.

 

Lita T  34:27

 We do.

 

Jean  34:28

 So we'll keep an eye on them as well. Yeah.

 

Jemma-Tiffany Rosewater  34:31

 Ok

 

Jean  34:31

And, and we just had author photos actually taken today, because we wrote a book together and it is being published later this year, too. So we'll have to do web author interviews.

 

Jemma-Tiffany Rosewater  34:45

Oh,

 

Jean  34:45

yeah. But that's it's very exciting.

 

Jemma-Tiffany Rosewater  34:49

Yes, and Maryland library supply and has offered to get my book on Bard, mobile and NFB is going to help Get on Bookshare so that all of my visually impaired friends can read.

 

Jean  35:04

That's amazing.

 

Lita T  35:05

That's great.

 

Jean  35:06

That's absolutely amazing. Well, thank you for everything you're doing. And yeah, we look forward to seeing what you do in the future.

 

Lita T  35:13

Yes, this was this was really a delight talking to you

 

Jean  35:16

 Thank you for being so patient with us with all of our technical issues as well.

 

Jemma-Tiffany Rosewater  35:21

You're welcome. Thank you so much.

 

Lita T  35:23

And I'm glad you're feeling better. You're welcome. You're welcome.

 

Jean  35:26

We hope you continue to have you know, good health and, you know, and just yet, let us know how everything goes.

 

Jemma-Tiffany Rosewater  35:34

Okay, I will,

 

Lita T  35:36

and we'll be sending you a copy. Like we said, a couple of days before we publish it, and then you give us a thumbs up or a thumbs down.

 

Jemma-Tiffany Rosewater  35:43

Oh, thank you.

 

Lita T  35:45

 Have a great day, Jemma.  All right you too, bye. So if our listeners have any questions or comments related to today's show, they can contact us at podcast dx@yahoo.com through our website, podcastdx.com and Facebook, Twitter, Pinterest, or Instagram.

 

Jean  36:04

And as always, please keep in mind that this podcast is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition or treatment and before undertaking a new regime, and never disregard professional medical advice or something you have heard on this podcast

 

Lita T  36:20

till next week.

Transcript