Temporary solutions to manage / More of my personal experience / Hyperacusis & Tinnitus

 TEMPORARY SOLUTIONS TO MANAGE

There is no cure for Hyperacusis / Noxacusis & Tinnitus as of yet, but I want to share with you all what I do to manage my symptoms everyday, until a cure surfaces. I just recently saw the best Neuro-Otologist in Canada, told him my story, and about my recent appointments with my former ENT Doctor. After explaining everything in full, he flat out told me he also has no solutions, which left me jaw dropped. I am currently taking sedative medications and need to reduce my dosages he said, essentially fully move off. I am using one medication for Physical pain, and was prescribed another for my Auditory symptoms. The medications are Gabapentin & Clonazapam which both his the Gaba receptors in the brain. Some people do well with Clonazapam for Hyperacusis & Tinnitus and some don't (What I was taking it for). Eventually these medications stop working for the majority of people as well, so they are only really used as an emergency solution in the toolbox, every now and then. I'd like to point out that I am no doctor, this is just my own experience. The Neuro told me to resort to CBD products, in which I already use CBD gummies to help control my anxiety, sleep and depression on top of my other medications. I told him I take Benadryl occasionally as well, which helps to suppress Tinnitus & sometimes Hyperacusis depending on what the root cause is, and your body / brain chemistry & pathology. He also told me to resort to Acupuncture, which I will be starting to do soon as well, at this point I will try anything to alleviate the pain. Other things I do to manage are guided meditations on Youtube, spirituality, and the fake it until' you make it strategy. Also being in quiet is number one, so living in a quiet residence is key to managing Hyperacusis LDL's (Loudness Levels). I also go for walks at night when it is quieter. 

PERSONAL EXPERIENCE 

A lot of people already know my story, but there is more to it, some things that I did not mention. One thing being having a job, and my previous work experience, and why I needed to stop working. I worked in restaurants for 20 years of my life, was the most exhilirating experience for me, it was my passion to be able to make guests happy. Not to mention I love food, and always have, I think we all do. In March of 2018 after Lymphoma treatments, I went back to work in the hospitality industry, and for the first couple of weeks the noise was not bothersome one bit, but then it started to get to me, and couldn't explain any of it, it was all so foreign. I did the whole medical thing to find out what was going on, saw multiple doctors and specialists and they brought to my attention that I had Hyperacusis & TMJ (Temporomandibular Joint Disorder). I spoke to my manager at work, and he put me in the "Quietest" part of the restaurant at the host stand downstairs completely separate from the dining area, so I could be more comfortable. I worked with the wonderful ladies in that department for a good nine months, but subsequently my ears just could not handle it any longer, and I had to stop, even in the quietest part of the establishment. The last time I worked was March of 2019. So after Lymphoma, I was still able to work for a full year, in all of the pain I was in, not just the ear pain, but back pain as well that my doctors could not figure out, and that's the reason I am on the medication Gabapentin, which has made my Hyperacusis / Tinnitus & Noxacusis worse. All in all, when the conditions get severe and catastrophic it's hard to hold down a job whether out in the physical world, or even sitting at the computer at home, because it all just becomes Physically, Emotionally & mentally draining for one to handle with these conditions. A few months after this all happened, I flew into a downward spiral, and just could not bare to not have one of my five senses fully there, so I can function in the real world. I couldn't find any help, and lived in a loud residence. This was it, I was determined to not stick around anymore. I attempted to take my life, but I did not succeed. I thought of my beautiful nieces and nephew, my sister, my father, the rest of my family, friends & loved ones. They would all be torn to pieces if I were not to be around anymore. Especially after all of the help I had going through my Lymphoma Journey. I came to my senses and stopped in the middle of what I was doing, and checked myself into the hospital. I was able to pull my head together, and accept that I have Hyperacusis, and now I just need to find help wherever I can. This is when I started to join Facebook groups, and met a lot of people who have the same conditions, I did not feel as alone anymore, other people were suffering just like I was from the very same thing. To this day we all still help each other in the groups and on the forums, and I have met some of the coolest individuals online, most of us are spread all across the globe, because the conditions are so rare. I keep on with these people, and I don't know what I would do without them. So before even thinking of drastic measures such as taking your own life due to this, think of all of the good in life - Family, friends, loved ones and maybe there is purpose in this pain. Gratitude always wins, even if we have no cure yet. Being grateful is one of my go to's that works a HUGE DEAL There is hope with this all, and with a team of others who also have Hyperacusis, Noxacusis & Tinnitus. WE ARE NOT ALONE. 

Thank you for listening,

David Vance

An invisible illness. Severe chronic pain caused by sound that affects the ears and the head

 AN INVISIBLE ILLNESS. SEVERE CHRONIC PAIN CAUSED BY SOUND THAT AFFECTS THE EARS AND THE HEAD

Ever wonder what people go through when dealing with an invisible chronic illness?, well that's what I am here to tell you all about. The conditions Hyperacusis / Noxacusis & Tinnitus, all three in which I suffer from are not to be taken lightly, they are all very painful. Imagine walking down the street and hearing the squealing from the train brakes from the train going by, or imagine a walkie talkie used by someone in a department store. These types of sounds can cause relentless pain for myself and many others who suffer from these conditions. The sounds of people talking to you, the shopping carts rolling by in the stores, the PA systems, the sounds of typing on the computer. These are sounds that normal hearing people do not recognize, but for someone who has Hyperacusis / Noxacusis and Tinnitus these sounds can cause extreme pain, and especially exposed to them for long periods of time. 

People will tell you to go out and work, get a job, go socialize with the world, do not make any excuses. Deaf people are out working, and are active in the community. The thing is with deaf people, they don't hear anything, and people with all three of these conditions (Hyperacusis, Noxacusis & Tinnitus) hear everything, and the sounds cause pain. It's an invisible chronic illness, and some people don't believe you when you tell them that sounds hurt your ears, in an extreme way. They will say "Toughen up", "Push through the pain". The thing is when the ears are exposed to sounds for short or long periods of time, the conditions get worse, and in a lot of cases can cause permanent nerve damage. Having a setback can take days, weeks or even months to recover from. "Take off the ear protection, your ears need to adjust to sounds again", some people will say. In very little cases this works but in most cases it doesn't. My family has told me to get surgery to go deaf, and I considered it, I would honestly rather be deaf than suffer from this. But with these surgeries, even if I were to remove my Auditory Nerve (A surgery my ENT discussed with me, that could make me deaf), the Tinnitus would still be present most likely, because it's from the brain. Not a lot is being studied or researched in this department yet, it's hard to tell which is "Physical",  and what's coming from the "Brain".  Science is behind in this department, especially with Noxacusis (Pain Hyperacusis). There is a surgery out in Florida at the Silverstein Institute, that focuses on "Loudness" Hyperacusis, but not Noxacusis. Even the statistics are average, not the best. So it's hard to pin point which treatment option, if there is one, would be best. We need to protect our ears as much as we can - even my Neuro-otologist (Best in Canada) told me to protect no matter what, he's the first doctor to deliver that information, So  I fully trust him. At the end of the day, we know our limits, we are the ones who suffer from it all, so we know what is best to do. 

When people do not believe the pain for us is as bad as it is, it gets very frustrating, because how do we get friends, family and loved ones to believe us?. Some will have their own advice for us, or they google the treatment for Hyperacusis & Tinnitus. Science is coming a long way, and regenerative medicines are in the works, but may not see the light of day for a few years still, maybe more. Sound therapy works for very little, most who are affected get worse by these "sounds" that come out of these sound devices. Very little research is being done, and the cure is still a bit away. Some people have luck with western medicine, with cannabis products, with natural herbs, diet etc. But a cure is not in sight as of yet. 

So what do we do?, when people don't believe us that the pain is as bad is it is?. The looks on our faces when someone is talking too loud or even at a normal pitch, covering our ears, and running and trying to escape from sounds should be enough to convince anyone how much pain we go through. Locking ourselves up in a quiet room, being a recluse. I don't think anyone in there right mind would be doing these things if they could push through the pain and it get better. If this was the case, we would be living life a little better, but unfortunately a lot of us are not. 

The sound of the phone ringing, talking on the phone, the speaker phone, the radio, the stereo, the TV (most of us now use closed captions to watch TV), the sound of anything that is artificial audio causes a great deal of pain. A dog barking, the birds chirping, the AC & heating units, the fridge humming. Not to mention the already blasting sounds of Tinnitus going through our heads as well, and any sound making that ringing louder. Some people have mentioned that their Tinnitus can sound like - Train brakes, morse code, whooshing, Christmas bells, whistling, electrical activity, like you are being electrocuted. This all happens 24/7 for some, they can't get to sleep because the Tinnitus is so loud, so they resort to sedatives, which in turn when they wear off usually make the problem worse. Babies crying, running water, dishes clanking, silverware clanking, the beeps from the construction vehicles, the beeps from the microwave. All of these sounds can cause a great deal of pain, and it's hard to transpire this to our friends, family and loved ones. So we ask them politely if they could turn down their voices, turn the TV down a little, not walk so loud on the floor above etc. Some have good response and are compassionate, but some are not.  

People have to live, people are going to live, and they are going to make noise. The world is not going to be quiet for us, so we have to adjust to the world, which is exceedingly difficult. When we ask for help, we really mean it. We can't do our dishes, we can't cook, we can't make phone calls, we can't make it to the corner store to get butter for dinner, we can't travel on public transit, studying a new course etc.  Even ordering and taking an Uber is hard, because you have to be in the car and the motor causes pain, the other vehicles, the ambulance, police cars and firetrucks going by, construction on the way. When and if we get to the point of the conditions becoming severe and catastrophic we need "Assisted Help". So that means someone helping us to live our lives, to do the everyday essential things for us to a degree, because we are no longer independent, and as much as we want to be independent, and others want us to be, it's just not possible, because the conditions just get worse when you push through, and get worse as time passes. We are not looking for pity, we are not trying to be a victim in any way. Point blank, the honest and biter truth is we cannot take care of ourselves any longer, and this is what a lot of people do not understand, because they can't physically see it, the illness is invisible. We protect ourselves as much as possible with ear plugs and over the head muffs. So when people are telling us to take our protection off and get used to normal sounds, it's like asking someone to commit suicide in a sense, because the pain will just worsen and worsen, many have tried and it doesn't work. 

So when facing these types of problems, when trying to educate and transpire what we need to others, and people offering their own advice can get difficult for us. I mean, it's great that people offer advice & suggestions, it means they care, which is a fantastic thing, and we who have these conditions need compassion and love, but at the end of the day we are the ones dealing with it all, and we know what we need. This is where the mental, emotional and psychological effects come in. Dealing with Hyperacusis, Noxacusis & Tinnitus and having a somewhat good attitude is a HUGE thing, It's hard to keep the mind in check. When dealing with others who offer their own opinions and advice on what we should do really takes a toll on our emotional and mental health, and makes the physical component even harder to handle, because now we have to deal with more on top of the illness. 

All in all, Hyperacusis Noxacusis & Tinnitus are invisible illnesses. We are not in a wheelchair, we don't have a cast on, our legs are not missing, our arms are not missing, but the nerves that are inside our bodies are in heavy turmoil, and for some of us damaged, and there is no fix. I have some of the most beautiful physical looking friends with these conditions but on the inside some of us feel like we are in the electric chair getting blasted 24/7. It's a hard thing to go through, and the whole point of this writing to try to get people to understand it more from out perspective, and not their own.

If you're loved one, family member, or friend is suffering from Hyperacusis, Noxacusis & Tinnitus. Please listen to what they are saying, they are going through it, they know their bodies, and what to do to help in the time being until a cure surfaces. 

Much love, Thank you.

David Vance.

Hyperacusis & Tinnitus / Chronic Pain - Coping strategies / Meditation / Numerology

 

Hi everyone, the following are com coping strategies I use for Hyperacusis, Tinnitus & Chronic pain. Maybe can be of help to you too. 

I'll start with meditation first. Meditation is a big part of me, and always has been. With having Hyperacusis & Tinnitus, I have implemented it more and more into my daily routine. It brings me a sense of calm, clarity, and eases my anxiety and depression living with this all. 

If I'm feeling any of these emotions I go straight to meditation, and I do 3 different practices. Two that are guided on Youtube (Using CC) , and the third - I sit in silence and close my eyes, and just listen to my inner self. 

The first meditation I would like to discuss is a practice for Anxiety. For example if my ears are acting up with increased Hyperacusis & Tinnitus I will do this practice. The first part of the meditation is naming what I am anxious about - Hyperacusis & Tinnitus increased. The second part is putting a "Judgement" on it. Clearly the judgement is that it absolutely sucks!. The third part is naming the "Story" behind it. Maybe I have an ear infection, tapering off of a med, or I just went out to the grocery store, and heard all of the outside world racket. The fourth part is to sit in complete silence, eyes closed and think about what the very next step to do is, not the next 5-10 steps. but the very next one. So for example if my Hyperacusis & Tinnitus is raised because of going out to the supermarket - I need to rest, and what actions can I take to try to make sure this doesn't happen again?. Order my groceries for delivery, or get someone else to pick up for me. This practice helps me in any moment of anxiety, and I'm able to figure out how to deal with it accordingly. 

Link to meditation

https://www.youtube.com/watch?v=O-6f5wQXSu8

The second practice is a guided meditation for Chronic Pain. For the first part of the meditation you indulge in relaxation techniques - relaxing your whole body. Than you think of an image that comes to mind of your pain, and acknowledge that this image is not you. If you were to be another person looking at you, you would not see this "inner" image of the pain that you are going through. Send this image compassion, send it love and accept it for what it is. The second part is to picture another image that you would like to see for yourself in the future - Maybe it's living with your family in hobbit town, or with your dream companion, your own quiet residence etc. Then you try to transition from the first image to the next, and totally disregard the first. The whole practice is about "Transition" and envisioning what you would like your life to look like moving ahead, and trying to forget about the "Pain" image. If you keep up with this practice on the regular, from my personal experience you can eventually see results moving ahead with your goals. These practices should be done a few times a week. For me personally, I do them everyday. 

Link to meditation 

https://www.youtube.com/watch?v=3RNXvq3oCHA

The third meditation is to sit in complete silence, eyes closed and just try to shut off your mind, not think about the past, the future, or the present. Just shut it right off. I know that it's not going to be 100 percent, and it's not for me, but try to do it to the best of your abilities. I will usually sit for 10-15 minutes, and it helps me to gain clarity on what my body is going through, what my body is telling me, what my inner voice is trying to say. It brings me into the present moment, and knowing that I have the moment, and even if I'm in pain, I am still okay. I am breathing, and I am alive. 

The whole purpose of meditation is to try to tune in the "inner self" and to find a sense of calm, and to be aware to live in the present moment. Forget about the past, forget about the future, and just try to enjoy the now as much as possible. 

Now I will dabble into Numerology. I have been fascinated with it for some time now. I notice 555 on the clock, 222 on my phone, or just other personal numbers that I see regularly, and I know they are from my highest good to send messages for my life path. If I see 11:19 that's the most powerful. My mother's birthday is June 19, and my father passed close to Remembrance Day, Nov 11. My Father passed on 6 months ago, and my mother in 2005. When I see these numbers together it's a message they are with me and are guiding me. It doesn't happen on purpose too, I could be in my worst moment of H, sitting in my kitchen crying, having a fit because the pain is so bad, and how much I don't like life that day. Then next thing you know 11:19 is on the clock, and it gives me a sense of ease and comfort, and knowing that I am not alone, and that things are going to be okay. 

When I see others numbers, for example 222, 333, 444, 555. In which I see quite regularly, I google the meanings, or talk to someone who knows about numerology. I find out the meanings, and usually it pertains to my current life, and helps to guide me on which my next moves should be. Now numerology all started for me after I got into meditation, I was able to be calm, and learned how to stay in the present moment. Then these things all started to happen. When I get these little reminders everyday, it helps me to keep going and to know that everything is going to be okay, regardless of my pain.

Meditation, Numerology and my Spiritual side all help me immensely with my conditions to better cope.

Thank you for listening to my personal experiences.

I hope this has been of great help to you, and may we all heal. 

David Vance