please contact [email protected]

They are all listed here: internationalpain.org/supplements-suggested-dr-forest-tennant-aracnoiditis/ We hope this helps.

@@InternationalPainFoundation big thank you this morning i will dig into this and see .

Transcription Continued... 14:35 I listen to books on a soft volume because it's steady. B: Sudden sharp noises are probably extremely painful as well? J: Yeah those are like being stabbed in the temple. B: You live on the East Coast and there's a lot of weather changes and patterns out there compared to Arizona where I live. 15:06 Are you affected by the atmospheric pressure changes with the storms that come through; thunder or the rain hitting the house or the car? J: Thankfully the atmospheric pressure change does not, but the noise of thunder is definitely painful or if it's raining really hard. 15:32 I have my closet which is inside of my soundproof room. I usually go in there if it is raining or thunder. That's the furthest place from any windows or outside noises and the other thing that happens as season changes for us is in the spring especially. There's a lot of lawn mowers and we don't know when our landscaping crews come all the time. 16:05 We will also have to suddenly leave the house and go to my grandmas and as far as the leaf blowers and then weed trimmers, it can be the best season or the worst season. In the winter, there are snow plows and the snow plows obviously are there because it's not safe to drive on the road. 16:31 So, I usually end up in a lot of pain when the snow plows come because we can't get away. The other thing is the pain. It lingers long after the noise like if there's a kid screaming. I would be at school for example; I would be in pain then and then it would all of the pain on my head and you're kind of convergence into migraines. 17:07 I'd have that all that night and the next day and for several days afterwards in pain. B: Do you have any other medical conditions that interact with the hyperacusis, I know you are legally blind. J: I am legally blind. I was born with cataracts. 17:38 I also have chronic migraines. I have seizures and I also have a sensory processing disorder where different clothes textures and things are sensitive to me. I am very bothered by them. But it's not like I get pain with noise. 18:05 If someone touches me or anything like that, I get the migraines definitely. They play into the hyperacusis because I don't deal well with pain in my ear. I get it all through my head. 18:36 B: Another question from Annika. Can you tell us how virtual school learning has been for you? J: Is this the best thing ever. Oh, Yes. Yes! Before this pandemic I was attending a small special education program. 19:05 And even with a lot of accommodations like heading to that area, I left early. I went in an office by myself when everyone else was transitioning. I was in severe pain all day every day and the pain were so bad that every day. When I said, all I could do is sleep eat dinner can go back to sleep, but I wasn't able to do even homework, 19:37 see friends. Nothing. It's just from the noises like the bells or students and teachers talking laughing or playing near my desk in my office, from other classrooms. Things like that. I have had a really bad experience in general with the school system. I in elementary school I was placed in several different programs that were extremely loud. 20:12 The only thing that was ever helpful was on my hospital instruction. And that was the only time I was able to learn without being in pain. Because the doctors thought the hyperacusis was the psychosomatic condition and the therefore the school believed what the doctors think. They took me off of home and hospital in sixth grade. 20:41 I just really been struggling and in a lot of pain with school since then. So, this virtual school has been the best thing for me. I really enjoy actually school. 20:55 I've always been a very good as a student, getting mostly straight A's. I have been in contact with our accounting director of special education as well as limits on how I continue to try to ensure not only other students who are benefiting because of medical conditions like this, different clinics, pharmacies and pain continue with this virtual learning after the pandemic. 21:32 B: Great answer. A person in the chat said, it is such a pleasure working with you and she believes that you're an intelligent young lady and a wonderful author and she's glad that virtual learning is working out for you. I agree, I think you're beautiful and intelligent and I am excited to be doing this interview with you today. 21:57 You're quite an inspiration. Next question, have you learned braille for reading? Are you a candidate for laser eye surgery for cataract? J: Yes, I read braille.

22:28 I have a vision teacher. I had my cataracts removed when I was a baby so I would not be a candidate for that surgery B: What's the hardest thing or things about living with hyperacusis? 22:58 J: I would say first the pain. It is the first hardest thing. Just getting pain from everyday things like if I turn on the water too hard or I would simply drop you know my cell phone on the floor or bottle onto the floor. That feels like I'm being slapped. 23:26 The second hardest thing is people not believing about the pain. I have been told many times since I was in elementary school; things like, you're not really in that much pain or that that sound is not going to cause you pain or you're fine, it's all in your head or it's just stress. 23:54 I've even been told by doctors sitting right in front of me that they thought it was just trauma and that I was being manipulative. So, I would say people not believing me. 24:12 And then thirdly and lastly, I would say the lack of understanding about the condition of people generally just think they can try to force me to be exposed to the audience and especially when I was younger and I didn't have too much control, a lot of noise exposure was forced. And that was very painful for me and also traumatic. 24:44 B: What is your favorite thing to do in life that you that you can do despite living with hyperacusis. J: Well I love reading I love Muslim too looks really softly That is one thing one of the few things that I'm still able to do. I love writing. 25:12 I'm currently working with an editor and publishing consultant to edit and self-publish my novel Alien Princess which is the first book in my chronicles. The main character has hyperacusis. I enjoy playing with my dolls like my mommy and my Bratz dolls and different Barbie dolls. 25:40 B: Congratulations on working on that book. The first one is always the hardest. And after that it starts going a lot faster. I'm looking forward to reading Alien Princess and there's other people commenting about how inspiring and brilliant and persistent and wise and resourceful you are inside out from us. And she's also looking forward to Alien Princess. 26:41 What would you like for society and the medical community to know about hyper hyperacusis? J: I would think the medical world to know that this is one condition to remember. That they don't even have a fully functioning model of the human monitoring system and that most of the brain is still unexplored. 27:10 And to remember how many conditions were previously thought to be psychosomatic. For example, fibromyalgia. I wish they would know that it is not psychosomatic. I wish they found mechanisms for it. Providers should please keep in mind when a patient is telling them what they get pain from sound even if you don't understand why or how, to believe them. Finally, to acknowledge the patient’s expertise. Providers have limited experience. 27:58 What new research would help this person. If none, please be honest with the patient and say I don't know but I believe you. Just because they can't see the pain, that another person is going through doesn't mean you're not in pain and just because you've never heard of something doesn’t mean it doesn’t exist. 28:31 Imagine someone you know having stabbing pain from the sounds of a fork, the telephone ring. Try to imagine if that was you and you were getting pain from these everyday noises how you would want people to treat you and how difficult it must be to live your life in pain from everyday sounds and have people not believing you. 29:07 Please try to be accommodating to that person and get to know their hyperacusis and how it affects them. B: The next question is from Michael who asks, how bright is the future for someone living with this condition. 29:30 J: Well it really depends on a lot of different factors on how they live. 30:14 There is hope, there is a future. Hopefully hyperacusis could get cured and if not cured with the way technology is advancing, that they may even be able to develop a device that could allow you complete control over the noise or at the very least be able to have that person in an environment where they're not in pain and use our technology to engage with the world and do things like work or school. 30:46 I really think it depends on a lot of factors. I would like to say though with the way this technology in modern medicine is improving. 31:02 Next, a generation or two generations down the line someone will have this hyperacusis and they would have a cure for it. They could do for, if not a cure than that it may be something noise accommodations and a quiet environment and more online tools that they would need to be able to live are paying for your life. 31:42 B: I hope for a cure, Jemma! Are there any surgical interventions? J: No there is a hope but that that's not happen right now.

Transcription continued: 32:03 There is an experimental surgery actually that is being done by Dr. Ferber. He is in Sarasota Florida. He has done on some patients with hyperacusis. 32:34 Many of the patients have had hyperacusis who see him. There is one case in which the patient works in film. So, you need to see more detailed information about that surgery and also, they only do it once people over 18. 33:00 And it is located in Florida which I'm not able to get to maybe one day in the future. If it turns out to be a viable solution, we can get that worked out. B: Can you talk about any of the treatments that you do or tools that you use each day to be able to go to school? 33:30 J: When I was going to school, I wore noise canceling headphones all day. There wasn't really much else that I could do for the pain. When things were at their worst my school was giving me a private time, which would help the pain to go down faster. 34:03 I would still be in a lot of pain from the noise even with assistance and tools. The other things that I found to have sometimes was depending on whether my seizures were acting up and also being around electrical currents like my cellphone. 34:39 B: Next question, a few people asked in a similar way, how did and when did, you get involved into advocacy? Because it's not necessarily something that that a teenager would get into. How did you get into it? And then Brian wants to know what motivates you to continue your advocacy work. 35:04 J: Since I was little, in elementary school, I would always say it might have something to do something make sure you know a patient that has hyperacusis has the things to help them. We planned to do advocacy early on. I first started and I was always inviting all the other, and continued on in middle school and high school. 35:35 When I started actually turning a lot of my energy into action was last year, in 10th grade. I did a government class and one of our projects was a local proposal project. But it could go much further. My proposal was to get the state of Maryland to establish a school program for students with hyperacusis & high school teachers. 36:05 This was obviously before distance learning of the pandemic. I started reaching out and actually speaking with staffers from my legislative official's office will be writing letters to him and then a big thing was one of my teachers. 36:26 She took me to speak at our county department of special needs. I had the occasion to share my story about being a student with hyperacusis and make suggestions and recommendations. I also established our relationship with our special ed director, Terry Savage. We’ve been speaking about continuing to distance learning. 36:54 I was able to get into a lot of advocacy during the pandemic because when I was in the physical school building here on the weekends I was in a lot of pain. 37:06 There wasn't so much I could do. I really didn't have much energy, so when the pandemic started after several weeks, I created a website and hyperacusis awareness as well as the Facebook and Instagram page and I have been networking and doing research on different organizations. 37:44 A lot of people are currently connecting on social media and on my website. I also am doing some advocacy with EveryLife Foundation and I am trying to work with hyperacusis research to pass knowledge to my awareness projects. I do not have a formal organization yet. 38:18 So that's kind of how I got into advocacy and what motivates me to continue with my hyperacusis. It is two things. One, when I look back on all of the suffering that I went through just in terms of doctors and even those five years. So, to get on A’s at school, this everything. When I have issues despite doing well, 38:48 it makes me very angry and I want to make sure that no one else has to go through them. And the second thing is when I hear all the stories in my support group and people even are now reaching out to me. My page others troubles pop out there. 39:14 How much pain others are in and seeing them suffering and knowing what it is like also motivates me to continue with my advocacy. 39:45 B: Marcus wanted to know where did you get your strength from? J: Well first, I definitely have not always had strength. In middle school, for most of middle school, sixth seventh and eighth grade. 40:10 I actually felt suicidal most days and I actually attempted to kill myself several times when I didn't have strength. Like right now during this pandemic it's kind of easy to have strength because my pain level. Other times, I would say to revise things. 40:41 A lot of times, I pray take me Jesus and I ask for different things that I use. Secondly, school. A lot of my books. I often find strength in the characters. The third thing I would say is I have to do something so that other people don't have to go through what I'm going through. 41:13 B: Do you have anybody that has motivated you or inspired you to be the great advocate you are? J: Yes. People. I'm motivated and inspired by our happenings in the hyperacusis community; for support and research and more.

41:38 And also, Brian. He works on research articles. Brian’s work has helped me in several of my doctors. I wrote this to my own 2011 research. His work and Institute medical records helped me several times. Another person whose whole topic has inspired me, my time and because he just a good person in general. 42:08 Another is my former church friend. When I was eight, she also had a chronic pain condition. So, we choose to empathize and relate. Also one another young lady I know who has hyperacusis. Since she was a child but she's never been diagnosed and they always thought it was just mental illness and treated her that way. 42:42 And now she kind of goes to try to help other children and teens have hyperacusis or rare pain disorders. And I also look at some of the advocacy work just done by other organizations, for other conditions like National Federation of the Blind. 43:18 And there's another advocate friend of mine on the edge of their condition, named Rosie. A lot of motivation comes from other advocates who are so sweet. B: You developed this when you were 6, but you didn't get diagnosed until you, were eight, and you really didn't know how bad it was going to be told you about 7. 43:45 Do you remember that time in life before you had hyper conscious symptoms or do you just remember that is your life? J: I don't really remember very much from before then. I have a few fuzzy memories but that's kind of what I mostly remember is my time in another patient with hyperacusis. 44:20 B: Another patient wrote us and said he is having a really hard time learning and dealing with the stress and he says he keeps promising himself that he's not alone. But for those living with this condition there are people suffering around the world so know that you're not alone. He said he's still trying to find himself and he's in shock. If you could please answer how to tackle this in a positive manner? 44:50 You've been so positive with how you've dealt with hyperacusis. Do you have something that could help him or other patients they're having a trouble - a hard time getting through this. J: Well first I have to say this is how I got my condition and something for people with this type of pain or any type of pain conditions. 45:18 No, you don't always have to have more positive sunny attitude about it. In terms of how to deal with it on a daily basis. If you've just got it, I would recommend really getting to know what sounds cause you pain. 45:41 And once you know that trying to find ways to avoid and minimize the exposure to those things, I know that shouldn't be difficult to do because we don't always have a lot of control of our environment with the people in their environment. I understand. Another thing to remember is that you know housing experts say you're conditioning your body not necessarily the doctors. 46:12 You need to do research to find articles to show to your friends and family if you're struggling with work with their weight everything is there to make sure your work situation. Mean you could consider asking your boss if he might be able let you come home and work from home. 46:37 A few countries have to research and look up disability services. 46:48 If you're not able to work, to try to make sure you do have a quiet environment and then move on. Possibly starting to think there are some relatively cheap soundproofing solutions or if you have to do something strange like going to a closet or underground to get quiet and the relief that you need to know. Listen to and do research to fight for yourself. 47:29 In case you wanted to have more specific details about your situation I think my website, my work e-mail and my social media account is on here so I'd be happy to try to send you research, what types of resources that may possibly be able to help you. 48:00 B: The next question is from Ken. Can this ever be misdiagnosed as something else? J: Oh, yes. 48:23 A lot of people who have it may not be diagnosed with it. A lot of times because most physicians have never even heard of it. So, they diagnosis as guys as common depression, OCD, ADHD. It is often mistaking for a lot of mental health condition. 48:47 Because when someone says sounds are causing pain especially from very young children or mis diagnosed because of the way it is manifest. Example, when I was younger and I was in pain a lot of times I would just completely curl up like a ball war which is you would be running trying to get away so things. 49:13 Even if the child is articulating that the noises are causing them pain. just that structure power structure with the doctor versus immobile child they may not be listened to that much especially because oftentimes the way the children respond to pain from certain disease oftentimes is diagnosed as something else and then that means that even though hyperacusis the treatment options of exposure then that would still kind of be the options and especially with children they're often not believed about being in physical pain well as a great answer.

Transcription continued: 50:07 B: On the screen for last few minutes, we've been talking I have put up the hyperacusis research links. Did you want to add anything to about the hyperacusis research? 50:44 J: I also had for anyone reading this because this is something good for you as you know in dealing with doctors and different people. There has not been a study conducted on a sample size population of people with hyperacusis to prove or demonstrate the effectiveness of desensitization. 51:17 There has not been a clinical trial done on a sample size population. What type of research will be able to demonstrate the effectiveness of hyperacusis treatment? What they have and what their doctors are using kind of to promote this success that they've had with patient’s success stories online. There have been case studies but only for individuals. 51:45 And so, it’s kind of view those successes turned it into a mainstream treatment. But the only studies are on a group of people who have normal humans who one group for hearing protection for a period of time the other group for standing reasons and the group that were the you know it is had a higher tolerance threshold. 52:16 Again, these people did not have pain hyperacusis scientists think that's something that we'll have you can keep in mind when you're asking doctors you know don't be afraid to question on when they're recommending options especially if they're causing pain in making worse would you be as its a patient it was hyperacusis. 52:43 B: Would you be willing to participate in a clinical trial that you knew was going to cause you extra pain or severe pain. Even a harder question when you take care of people under 18 who have it. 53:15 J: I just wondered personally for you because you advocate and you share your story. When brought up the fact that there weren’t any studies on hyperacusis to his patients, that were of a population sample size, it's not appropriate to come up with a conclusion. 53:50 It made me think like well who would want to do that to themselves. So that's a tough situation to be in to beat it, to have a condition that is so painful that it's hard to even get an actual clinical trial completed that would be effective and continue to help your population with living with hyperacusis. 54:20 B: I never thought of that challenge before until hearing you speak just now. So, thank you for that information now. Please go ahead. Go ahead. J: Hyperacusis research now this is not a clinical trial for sound therapy or disassociation. They have created an experimental hyperacusis device that would allow patients to control how much noise in interference heading to the exact… 54:53 … discomfort levels. And they're doing clinical trials on the right thing for them. I unfortunately, I participate in those trials for a few reasons. 56:05 B: The final question is going to be, what are your final words that you want to leave everybody with at the end of this presentation. 56:37 J: I would want people to remember that you never really know how much pain someone you've gained from something that you take for granted and when someone tells me that they're in pain to please some absolutely great advice. 57:09 B: Thank you to you Jemma for being here. You are absolute pleasure and so smart and wise beyond your years, really. And I hope that other patients whether they're there in their teens or they are 57:28 an adult that are going through hyperacusis or know somebody that is, that they listen to this and they take from it all the great information and energy that you put into it and use that to better the world and help hopefully help find a cure and or better treatments for hyperacusis going forward. J: I really hope so as well. 57:56 B: Thank you to everybody who attended. If you want more information or webinars you can go to internationalPain.org. End of Transcription

Sorry, no. We can sell you film usage rights. Contact [email protected] if you are interested.

i am not surprised at all ,,,,,they caused every thing i had for the last 30 years and it does not STOP ,,,,wich you well

Thanks for listening

It was just a fact that we felt that the Dodgers should of got to go to the World Series and they got beat out by the Cubs, no insult intended. #GoDodgers! Thanks for watching!

International Pain Foundation oh okay well my bad on my part

ha good one, we went this way because that's not proven publicly… but they did stop him. ;)

@@InternationalPainFoundation touche

Thanks for the visit!

Amen!

He absolutely was! Thank you, Matt.

Did he die?

Thank you! Cheers!

Not yet! We have looked into it, but not decided to put it up on streaming sites besides youtube yet.

This is the full version. :)

Yah! So glad!

Thank you!

Statement of facts by Dr T. But institution or not, patient focused approach should be expected rather than inconvenience. With imaging, many times radiology is there to confirm what Dr ordered. Sort of like restaurant menu.

Good question, to sue the Federal Govt you must have permission. It is very expensive and difficult to obtain. The FDA is part of the Federal Govt. But if you think you have a case, check with a lawyer (or two).

@@InternationalPainFoundation all the corruptions hangs out together with the lawyers etc etc etc

Sometimes you gotta look and find it yourself on MRI if report sounds too good to be true.

So sorry to hear Kathy. We do have some additional information on our website.

We're glad you like it