Member- Oct 2, 2014
- 283
- Tinnitus Since
- 07/2005
- Cause of Tinnitus
- Loud Noise, Ear Infection, TMJ
Hello Everyone,
My name is Kris from Vancouver BC, Canada. I have been waiting a long time to get to the point where I feel that it would be appropriate to write a "Success story".
This has been a 10 year long journey for me (9 years of Tinnitus and 1 year with H). So this will be a bit of a journey for not only you the reader, but for me as well. My goal of writing this is to give back to this support group - which in my darkest days gave me so much hope and support. If anyone is able to gain a little tidbit of support or hope from this message - then it's served its purpose.
Now, lets get this show on the road!
*Note for everyone: I wrote this out over the course of a month, so I apologize if this jumps around a bit or repeats itself at certain times*
A Little Backstory:
I grew up in a family that loves music. My dad was the type of person who has 600 cds, 700 vinyl disc and lots of music on cassette tapes. Music for me was what would help pick me up on bad days, add energy to a sunny day, and serve as the definition with who I was as a person. Since an early age I would be listening to music through a boom box and into my over-ear headphones. While I always enjoyed rock music, I think I always kept it at a safe level as I have always had pretty sensitive ears.
I wasn't the biggest concert goer, but I went to about 7 or 8 shows when I was in my mid to late teens. I never saw other people wearing ear plugs so I just thought "Well I guess I'm fine then..."
It wasn't until I was 16 (Summer 2005) when I remember hearing Tinnitus for the first time. I was up fishing with my dad and I had woken up in the middle of the night and had to get something from the car. It was DEAD quiet and I clearly remember slipping on my shoes, going outside and then stopping by the car and hearing this "Shhhhhhhhhh" sound. I thought, "Hmmmm, maybe I was just listening to to much music again" and that was it. At that point in my life, I was naive and had just thought that EVERYONE must experience this when listening to music. Plus, I had never even really heard about "Tinnitus" before.
It wasn't until I was about 19 (2009) when I realized that this indeed wasn't something that everyone experiences....
My Realization Of This Thing Called "Tinnitus"
(Spring 2009)
I'll never forget that exact moment when I first realized that hearing sounds like that wasn't normal. I was out on a hike with a friend and I had mentioned to him:
"Oh yea, I really like listening to music while on transit. It helps make the time go by faster. I hate it though when you hear that hissing though, it gets a bit annoying sometimes"
His response was something like:
"Uhhhhh that's not normal"
I started freaking out. He thought it was all in my head because there was NO WAY someone who is as young as me could have T.
I went home and stumbled across a "Tinnitus Help Page" that was run on a Yuku Fourm service. I went on the board (more on this later) and posted my problem and asked the usual questions. "Will this go away, is this normal, will it get worse etc...." Some of the responses were really rough, with some people even saying that it was all MY FAULT. That's what hurt the most - the guilt of the situation.
At the time I was trying to push through my last 2 months of college (I was getting my diploma in Photo Imaging and Business management...aka: Photography). At the time I was shooting for the Vancouver Canucks (NHL Hockey Team) and was spending a lot of nights in louder arenas. I tried my best to use ear plugs and push through. Amazingly I was able to finish my work term there and graduate...but I had just squeaked by without having a mental breakdown.
After school finished I crashed hard into a depression. I tried explaining it to my parents, but they didn't really understand. I slowly picked myself up and realized that I needed to kick my T to the back of the bus and then proceeded to do so. I realized that I could still listen to music, but had to keep the volume even lower (Ex: on a iphone there is 16 volume notches. I kept mine between 3 or 4). I picked myself up, moved to Vancouver Island and lived out there for a year. I had friends out that way; and between dating, working and hanging out with friends I just sort of kicked my T to the back of the bus and that was that.
When I look back on it, I would have to say that mine was still pretty minor at that point. I would hear it if I was sleeping, in a quiet room or forest, had a couple of beers or in situations like that. And thats where my experience with Tinnitus stopped. For about a good 5 years I was fine.
The Volume Turned Up
(Summer 2014)
At the time of this incident I never really thought about my T.....EVER. To the point where I was living with a woman for a year and she didn't even find out about it until after we stopped dating. At the time I was living a normal life. I was working at a smaller Apple store, taking transit, traveling, going to a concert here or there with ear protection; and was living a very normal life.
In summer of 2012 I decided that I wanted to follow a passion that I have had for my whole life - the environment and the outdoors.. I really wanted to have a career with Fisheries here in Canada, or with some sort of environmental or government agency. So I went back to school and did some upgrading and then got into the Recreation, Fish and Wildlife program at Selkirk College in Castlegar BC ( A small town of 6,000). The program had been around for a long time and had a very highly regarded reputation. It was in a very small cheerful town. Time moved a little bit slower and people had different hobbies such as ATVing, shooting, hunting, hiking, fishing etc...
It was during the summer after my first year in the RFW program. I had a friend who was a very experienced, but young trap shooter. She convinced me to go out with her and give it a go. I asked her if she had any of the "earmuff type" of ear protection. She said both her and her dad never used them and only used ear plugs. She went and asked her dad (Think small town close-minded red neck male stereotype) and he uttered the following words:
"Oh, you mean those pussy ear muffs?! No, I don't have any of those. Just use the ear plugs and you'll be fine".
In that one split moment, I put my trust regarding my ears into the wrong persons hands. I went out with her to a small field and did some target practice with her (I won't go into the details because they don't matter).
Anyways, we then proceeded to come back to her house and hang out with her friends and I never really thought about it after. When I went to sleep that night, my T sounded a lot louder. Now I was sleeping out in the backyard in their spare tent trailer, so it was pretty quiet as well. That's when the worrying began. For the rest of the weekend I went on some adventures with her friends, but was mostly worrying about the possible permanent increase in my T.
At the time, I was very stressed because of work, getting ready for school and living with my grand parents (they are very old fashioned to put it lightly) in a small town and not knowing anyone. So wether my tinnitus got worse or not (I'm almost certain that it did); or that emotional connection that I didn't have to my T was now reconnected - it's a bit hard to say.
That's when my life started to unravel. I tried continuing to work, but I was becoming so stressed that I wasn't eating much or able to sleep and had to quit (they were very understandable, and for that I was extremely thankful) my summer job. I moved back in with my parents who lived about 7 hours away and then searched for possible treatment options.
Hopeful Healing
(August 2014)
I don't want to focus on the so called "depressing part of this journey", but I do feel its important to note where I was feeling at this point. I was very depressed, somewhat suicidal and had no hope for the future. I had started to develop Hyperacusis after the gun fire incident. Wether this was caused by the actual sound of the gun, or my extreme emotional state it's hard to say - but I think you could make the argument for both.
On top of that, I also experienced a loud car horn when I went to the mall with my girl friend after returning back to my parents house. It added a fluctuating ringing tone to my usually hissing T in my right ear. Now I should note that this car horn was EXTREMELY loud, and must had been modified in this car. My girl friend (Who also has T as well) who was with me at the time also agreed that it was extremely loud. I have sometimes wondered if this may have caused my H as well - but once again its hard to say.
Around this point (Aug - October 2014) is where after returning home I started looking for some sort of treatment. I tried seeking out some online support groups and found some positive boards (Tinnitus Talk) - and other groups that weren't so positive (more on that later). What followed was a journey of me having to wait until I was able to get into an ENT for a referral to the Tinnitus Clinic at St Pauls in Vancouver BC. During that time, I would only go outside to walk/run at the park near my house. I spent most of my time at home watching Netflix trying to pass the time until I was able to get into the clinic.
When October rolled around, I went to the ENT who said I had a large amount of earwax in my ears. He cleaned it out and even had to use one of those small vacuum cleaners to get all the impacted wax out and he then gave me the referral that I needed to gain access to the Tinnitus Clinic.
Lets Add Some Positive Energy
(Late October 2014)
In late October I was finally able to get into the St Pauls Tinnitus Clinic in Vancouver. It is run by a wonderful audiologist named Glynnis Tidball (Who has Tinnitus herself). You first must go through a group session with about 5-6 other people who have T before you're able to proceed with individual treatment. I was the youngest person by far in the group, as most of the people in my group were 40+.
The session consisted of Glynnis documenting our medical history with our T (How loud is it, do we have any other symptoms, how we got T or H etc..) and providing us with extensive information about T and H and how we can manage it and possibly reduce its impact on our lives. The point of the group session was to help some of the people who only needed that information, and were then able to understand their T and move on with their lives. For someone like me, she recommended trying sound therapy through another audiologist who does the "sound portion of TRT" at a different clinic, as well as booking an individual TRT counseling session with her - as I was a bit more of a difficult case.
I then proceeded to book my individual session with Glynnis, as well as booked a session with Audiologist X (protecting this person for privacy reasons) for the sound portion of my TRT.
I will get into this a bit more during the last part of this post. But I unfortunately wasn't able to find a plan that worked with Audiologist X. I tried the sound devices that the audiologist gave me for the 45 day trial period. Unfortunately while they may have helped my H, they in turn caused my T to sky rocket to extremely loud levels at the end of the night when I took them out. We tried to readjust the plan for how I would be able to reduce/manage both conditions, but there was a lot of miscommunication on the audiologists part that plagued the process so I returned the $3,000 devices and continued on my way.
I went home that night extremely depressed and got a 6 pack of beer, got drunk and was extremely upset at what my life might look like in the future feeling as my last hope for relief had just failed.
Seeing The Flicker Of Light At The End Of The Tunnel
(Mid - Late January 2015)
I was first recommended by Glynnis to go check out Maria at Westside Physiotherapy in Vancouver. As originally suspected by Glynnis (and from what I remember growing up) I have a TMJ issue where I "clench" my jaw at night. This problem only increased and got really bad after my exposure to the gun fire in the summer as it seems to fluctuate with my stress levels. I ended up seeing Maria for 4 visits. She helped first show me how proper posture makes a big difference (as we all know, that upper shoulder/neck/jaw area is all connected), how to massage my jaw muscles and how to realize/correct when I am subconsciously clenching my jaw during the day. Overall, she was a BIG help and I can see myself going back to her in the future for a tune up or two.
Finally in late January I was able to see Glynnis for my 3 hour marathon TRT Counseling session. We sat down in her office (with my mom taking notes) and started the session.
Here are some of the main points that we touched on:
- She identified where my H sensitivities (Loud sudden sounds: Dog Barks, Car horns and real HIGH frequency sounds from electronics) are, and how long I've had tinnitus for.
- We went over what LDL tests are and how with her she says that she finds that she gets more information from actually talking with the patient. If it's really needed, or if the patient insists then she will do one - but normally doesn't as she doesn't like causing pain to the patient if it's not needed.
- We tried to pin point where I have other areas that may hold me back from habituating with my T. For me (especially since I realized that I have T) I have a habit of catastophising health events and in turn always think the WORST case scenario will happen (ex: My H will ruin my quality of life, making my T worse and pushing me to suicide).
- We went off into a sound proof room and she did some tests on my ears. She did a BEAR Test (I believe that was the name, but can't remember for sure) which is able to tell at what health the hairs in your ears are. She said that I have "beautiful inner ear hair" - that made me laugh
- We didn't do a hearing test as I had 3 in the summer and they all turned out "normal"
- She said that she has a feeling that my H was caused by the extreme anxiety that I had leading up to AND after the gun incident. It should be noted that once I started to get a control on my anxiety, my H started to minimize a bit and overall has continued to do so.
- We talked about protection and covered some of the normal talking points. Wearing plugs at concerts, and in louder situations, what heavy duty protection looks like and when it should be used etc...
- When I asked her opinion on when it comes to H and why some people get better and others don't. She said while new research is being done - it's still in its infancy. But from what's been researched so far. It seems to come down to the auditory, physical and psychological characteristics of each patient - but still so much of it is unknown.
- Said that Cognitive Behavior Therapy is a big help with some people who have T.
- Recommended that I stay as active as I can. Yoga, Running, Gym etc... it plays a big role in overall health as well as releasing all those lovely endorphins.
- She believes that I had pre existing H, even before I realized it this summer. That either the gun, but more likely the stress of the incident caused it to get a lot worse as I have no physical signs of damage from any of the testing that was done.
To say that Glynnis helped me is a huge understatement. I now see why Dr. Nagler says that the counseling part of TRT is almost more important then the sound therapy in a lot of cases.
For me, it gave me the time to have many of my questions answered, and to have an open conversation about both of these very mysterious conditions with someone who has been working with patients for 15 years. I found that after that long conversation I was now given some basic tools that can help me manage and move forward with both of these conditions.
Moving Forward... (March 2015)
I've now come to the point where I've reached a fork in the road. Do I continue to just stay inside and live a very sheltered life. Or do I take that first step towards living a somewhat normal life again.
What's the alternative? Live with my parents for the rest of my life? What happens when they pass on? Yes, it's really scary sometimes at the thought that my H could come back and be as bad as it once was - or maybe even come on worse. But at the end of the day, I feel pretty good and just have some more mild sensitivity to high frequency sounds and loud dog barks that cause some discomfort and can make me jump once and awhile.
I can protect myself to the best of my ability, but who knows what can happen in life. I could also die from a car crash, an aneurysm, a heart attack tomorrow, and so on and so on and so on.....
Am I bit bummed that I can't listen to music through head phones anymore, or go to concerts - yea a little bit. But I am SO VERY THANKFUL for what I am able to do. Plus if there has been any silver lining to this whole situation, it has given me a chance to spend a lot of time with my parents and create some truly wonderful memories that will last a lifetime. I truly count them as two of my closest friends that I have in my life.
Currently, I am now preparing to return to my previous summer job as a park patroller, and move in with my girl friend (we are currently doing a long distance relationship after meeting last summer). I am also following up with another TRT clinic on Vancouver Island to see if I can try TRT with another audiologist named Robynn (More on her later) with the hope of completely reversing my H and seeing if I can get rid of this more mild sensitivity that I have now.
My end goal is to be well enough to return college and finish up my schooling that I had started last year at Selkirk College. I am just trying to take this one step at a time and hopefully with a little luck, I'll be able to return to a somewhat normal life.
Tips, Tricks and Opinions:
I wanted to include this at the end of my story. As I have been dealing with T for a decade, and H for almost a year now and feel that I have some information that could be of use to some people with T or H.
I want to state that I am not a doctor, and have no medical training. So it's important to follow whatever your doctor or audiologist instructs you to do. You can take what you what want from this, or choose to ignore it or skip some of these points - but I feel that I have some important lessons to pass along.
Dealing with younger people who have T: I'm a very motivated and driven person and at the time when I first got T, I only really briefly explained it to my parents what T was and just sort of took some precautions and kept pushing on with my life. However, I never really took the time to explain IN DEPTH to my parents what I was going through, what T is and about what I had researched.
When you're young, you don't ever really want to feel different from other young adults who are the same age as you. Thus pushing yourself to go to events such as clubs, bars, concerts or certain events that may cause your T to get worse. I feel that if I had explained that to my folks and friends a bit better, then they would have understood and maybe been that safety net where they could said "Hey Kris, do you think that is such a good idea? What about your T?" etc...
Try dealing with the H first: When I first got my H, I was a mess. I was afraid of every little sound as so many sounds in my environment caused me discomfort or pain in my ears. It wasn't until I was able to control my anxiety that I was able to achieve some form of progress. If you are someone like me who has H and T, I would say if you are not able to reach a clinic for assistance with these conditions, then do what you can to help manage or reduce your H. I say that as once I was able to notice a reduction in my H (and TMJ) that I in turn felt better about my T and was able to finally make some progress.
It seems for some, "progress" can be achieved using different methods. Stress control, massage, sound therapy, TRT counseling, CBT or just simply TIME can help. It can be extremely frightening in those early days. But at the end of the day you need to do what you need to do to help protect your ears, especially during those very sensitive early days. I know for many this is easier said then done.
If you feel uncomfortable DON'T do it: As I mentioned above with the story regarding the gun. In that moment I knew that I was uncomfortable with the situation and that it probably wasn't the best idea for me to be firing a gun. I should have listened to my gut and said "No". It took me a long time to get over the anger, regret and frustration, but overall I have been able to move on from it. It has taught me a very valuable lesson though regarding listening to your gut and if you don't feel comfortable with a situation, then just politely say "No"
Since having H, I have learned now more then ever how important that lesson is. There have been situations with friends, audiologists, parents and my girl friend where I have had to say "No" to certain situations or take extra precaution - and in some of those cases it caused a lot of frustration on their part.
But as Glynnis has said to me, at the end of the day it's MY ears (and brain) and you are the only one that knows how they are feeling. I have made progress since my original diagnosis, and I hope to continue to do so. As I explained to my girl friend one night:
"Right now, being this cautious is my reality. I hope for it to be a short term reality, but it is mine right now none the less. I am going to try and get out more in the world, as I have already been making some great progress with my sound tolerance increasing already. My main goal is to be able to live with you, and also hold down a job. For many people that sounds simple. But for me it's a large step that will have it's own anxieties and fears that go along with it. Hopefully, like when I've taken previous steps before, those anxieties will be resolved as I continue down this path towards a more normal life.
I can't promise that it will be smooth, and I ask for some extra support and understanding right now as I make this transition back to a more normal life. I know you are fearful that there may be a repeat of last summer - but I need to do this. My H is more mild right now and to be honest - what other option do I have. Right now I can try my best, be smart with my ears and follow the advice that has been given to me by my audiologist and just hope for the best"
This was my response to us possibly having a night out with some of her friends and I had to say "No" to it. She understood but was worried about the future. Once I explained this to her, she understood. We are both moving towards that goal together now.
Once I am able to hold down a job and live with her, then I plan on going out to restaurants with her, frequenting malls more (I already do now), walking down streets without worrying and only using protection when its needed. Wether it's with your partner, audiologist or anyone else - communication is key to help reduce as much frustration as possible.
Finding Appropriate Support: Very early on in my journey with T I did what a lot of people do and seek out online support. I found two support groups that I thought would be able to help give me support as I tried to figure out how to progress onwards with my life. However in less than 24 hours, I saw nothing but very depressing posts. As well as people blaming other posters for them being foolish and not protecting their ears, bickering on opinions and some giving misinformation.
I soon realized that this was doing me no good and tried to stay away from them. I eventually found "Tinnitus Talks" and the "Hyperacusis Network" and I have recommended them to other as these boards focus more on the support part while trying to maintain a positive attitude. Those are just the two that worked for me, but there are many other boards out on the web which can serve this purpose as well.
Finding a Good Audiologist: Like with many things in life, finding a good restaurant, doctor, audiologist all have one thing in common (Ok, besides the food element), they usually have good customer service. When I was searching for an audiologist very early on I was lucky enough to come across a couple of good ones....while also coming across a couple bad ones. What usually separated the good ones from the bad ones was an audiologist who can be open and honest with you, answer your questions to the best of their ability, and if they can't help you directly - then at least they can hopefully steer you in the right direction.
I remember one audiologist who was trying to help me with my H would throw out statements like:
"What's the matter, you don't trust me? (when I asked questions)"
"Really all you have to do is this, this and this and you're set. This really isn't that hard!"
(This audiologist said that statement when it came to discussing a treatment for my Hyperacusis!!)
The point that I'm trying to make is that if you feel uneasy with an audiologist, doctor, or even a restaurant - then it's time to find a new one. (I know that not everyone is able to travel to or can afford it. Which can make things more frustrating).
Now if you contrast that to when I spoke with Robbyn Brodie an audiologist from Vancouver Island and has a TRT clinic. Firstly, she returned my phone call and answered all of my questions and gave me 30 min of her time for free. We talked about the TRT that she administers at her clinic - which follows more in line with the TRT protocol and would be a better fit for me. She jokingly said that she hopes that I DON'T have to come see her, but if I do then her door is always open for me.
I remember sometime during our conversation, I was worried that I was taking up to much of her time and she just simply said:
(FYI for anyone that doesn't know Canadian geography. I live in Vancouver and her clinic is on Vancouver Island. To get there you must take a hour and a half ferry and drive for about an hour to get to Victoria - which is where her clinic is).
"If you are willing to travel across an open body of water to come see me. Then OF COURSE I am going to try and help you and answer your questions before coming. That way we can set you up for the best possibility for success."
BHAM, that right there at least showed me that she has a skill set (Communication skills) that is sadly missing with many medical professionals these days. She was empathetic, honest, kind, genuine, not acting like she knew everything about H and T and ANSWERED MY QUESTIONS (To the best of her ability).
Currently, I have a couple appointments booked with her in April to try and start the sound (and probably a little counseling) portion of TRT again. While I am a little afraid that it could do the opposite and set me back a bit to where I was before. I obviously want to try and get FULLY better...and this may be my best shot at it!
DIY (Do It Yourself) .
I am firm believer in if you want change to happen, then YOU need to make it happen. One of the biggest knocks that Tinnitus and Hyperacusis has against it is usually when people overcome it - they in turn stop talking (and in turn stop supporting) about it! In many ways thats one of the biggest hurdles that both of these conditions have in regards to getting funding for research.
For me, I plan on supporting both the American Tinnitus Association (or you can support another Tinnitus Organization) and HyperacusisResearch.org. Through talking about these conditions I have had many friends and family donate to these organizations and get involved in the conversation - especially when it comes to being smart with protecting your ears. In the future I would like to see if I can pull together a charity run, or another kind of event to help raise money and awareness for both of these conditions.
I am really stoked to see people like Markku and his team on Tinnitus Talk and how they are doing an amazing job creating a resource for people who have T, H and PT. There is also up to date information on new treatments, funding options and so much more!
While I hope one day there will be a cure for Tinnitus and Hyperacusis, what I would more so like to see is another form of treatment besides TRT be created. Especially for people that don't respond to TRT and need another option. I am a firm believer in science and am encouraged by much of the new neurological research that is being done and how research into one condition (ex: epilepsy) could help another (such as T or H).
Who Your Real Friends (and Partners) Are
Many people are afraid of illness - especially young people. When I was first diagnosed with my H and T it made it very hard for me to be able to see my friends in the city. A couple of people who I considered to be closer friends came out once or twice and that was about it. Amazingly, two friends who I wasn't as close with totally stepped up and took me out on hikes, hung out with me at home and many other things. For that, I am extremely touched and thankful to say the least.
Having a condition as unknown and frustrating as T and H is hard for a lot of people to wrap their head around. You may end up losing a couple of friends, but hopefully the ones that really matter will show their true colours and come through for you. I know in my case I am extremely lucky to have the couple good friends that I have in my life, a wonderful girl friend and very caring parents who have supported me and kept me motivated through out this whole process.
Sorry, I Don't Care What You Think
Anyone with T or especially H can relate to this.....
You're out at a parking lot, concert, subway etc... some situation that require protection from very loud noise. Someone then comes up to you and asks "Why do you have ear plugs in?!" or maybe they give you a weird look like you're some type of leopard for wearing ear plugs in public. Well for many of us these are situations that we've experienced and they can cause feeling of frustration, shame or sadness.
In those situations I used to feel many of those feelings. Now I just don't give a f*ck anymore (pardon my french). If there is anything that having these conditions has taught me, is that you need to do what's best for your ears - no matter what people think.
There have been some situations where people have asked me to take my headphones off, or in some cases even openly mocked me once or twice. In most cases I have gone back and explained my situation to those people, and in most cases they apologize profusely and now have a new understanding of what an "invisible" disability looks like (This is more of an issue with people that have H).
I just don't care anymore. If you think I'm a bit off for wearing ear plugs in public then COOL - I don't really care! My parents, girl friend, friends and family know whats going on with me, and those are the only peoples opinions and thoughts that I really care about.
There's Different Flavours of Tinnitus and Hyperacusis....sort of.
Over the years I've been reading many different variations on peoples accounts of their Tinnitus and Hyperacusis. Different pitches, volumes, frequencies, sensitivities etc... everyone seems to have their own flavour.
Until we are really able to come up with a way to know how both of these conditions originate and how to treat them, I feel like it will be only then that we will know the different variations of these conditions. Or why some people who get T after only just one concert, while someone like my grandfather who has had MASSIVE hearing loss and uses very strong hearing aids (He hunted growing up, worked in a mine for a decade, and then a factory after with no hearing protection) yet has no T or H. Or why is it that Hyperacusis that is caused by Lyme Disease or strong oxitoxic medication seems to be so much stronger and harder to treat.
While I know that this thought is often debated, I think the main point for everyone to take away from this is that if you need help, then it's important to seek treatment, get diagnosed and hopefully be able to come up with some form of treatment that will HOPEFULLY obtain some sort of relief from your T, H, or both.
Wonderful Motivational Stories:
I am someone who really likes hearing inspirational stories, as they help me motivate myself in trying times. I wanted to pass along some of these stories that really made me look at my own conditions and how I can hopefully overcome them. Here are a couple that gave me a lot of motivation and drive to fight back against my Hyperacusis and Tinnitus.
Rebecca Alexander: Rebecca is a young woman who has a condition called Usher Syndrome III which causes the gradual loss of her eye sight and hearing. She has AN AMAZING and honest book called "Not Fade Away". It is a extremely interesting and motivating book that profiles her life and condition, as well as how she plans on moving forward with it. She currently has only 10% of her vision left, and was implanted with a cochlear implant so she will have some form of hearing. However, it makes most sounds sound very "Mickey Mouse" as she puts it. I should also note that she ALSO on top of all of this has TINNITUS, and body pain from an accident where she fell out of a second story window and survived. Yet she keeps a very positive attitude and continues to thrive running her own psychotherapypractice and trains for events such a marathons and other physical events.
I found her book to be extremely inspiring. I just thought to myself, if this woman can handle all of these obstacles and continue to thrive and move forward, then I need to try as hard as I can to overcome both these very mysterious and debilitating conditions.
Melody Gardot: When Melody was 19 years old she was hit by a car that was making an illegal turn. She suffered extremely serious injuries, to the point where she couldn't leave the hospital for a year. She suffered many broken bones that still to this day requires her to use a cane. She has light sensitivity issues and has to deal with severe tinnitus and hyperacusis.
Through many different therapies she was able to recover somewhat, but still deals with many of the injuries to this day. However, through music therapy she was able to find some new found joy in her life and after a couple of years she tried singing some songs of her own and continued pushing towards a new goal of becoming a singer. One thing lead to another and now she is a grammy nominated jazz singer. She went after her goals and continued to push forward even after having to overcome (and still on a day to day basis) EXTREMELY difficult obstacles.
Dr. Nagler: Very early on I got to know Dr. Nagler through his "Doctors Corner" section on this website - where I peppered him with HEAPS of questions very early on which he graciously answered (Thank you doctor!)
It wasn't until I learned about his story that I really found strength and great admiration for the support that he gives to many of the people on Tinnitus Talk. I was taken a back by the story that he told about how even on the famous boat "The Maid of The Mist" which cruises by the foot of Niagara Falls, and how he can EASILY hear his tinnitus through the wave of sound emitted from the falls. That BLEW ME away, as my tinnitus can still be masked by running water and the shower.
He also recently had a change in his tinnitus after it staying the same for about 20 years. Like many of us, he reached out for support and I was really stoked to see people reach out and give him support right back. He was able to once again find relief through TRT and from last I heard is now back to living a normal and happy life (and even went out for Thai food, which usually kicks up his T a bit temporarily).
I am very grateful for the support that he gives on Tinnitus Talk, and helps give good general information, and steer people in the right direction if they are asking for good TRT clinics or audiologists.
Wrap Up
I am now going to try and transition from this more solitary life to one where I will be working and living on my own with my girl friend. I am moving back to the city where I worked last summer where I hope to transition back to my job as a park patroller and start a new life with my girl friend. I know it won't be easy and I'm sure there will be set backs along the way. But I know that my sensitivities have gotten better and hopefully will continue to do so. Luckily my job keeps me away from cars and has me in quiet parks most of the time. Plus dog owners usually keep their dogs in line around me since I'm a park patroller - so that usually means less barking
As mentioned above I am going to try TRT again with Robynn and hope for a better result compared to what I had with Audiologist X. I feel that I have sort of plateaued in regards to sound tolerance gains and will see if this might allow me to recover fully from my H - instead of still having this mild bit of it left along with my T.
I hope for anyone that has read this that they were able to find some form of support from this. I can honestly say that for me it has gotten better with time and I hope that in continues going that way. I still have some bad ear days, but now I am mostly having good ear days.
I would like to just take this time to thank @Dr. Nagler , @billie48 (Especially your success story that I still refer to from time to time), @RCP1 and @Claire43013 (As well as your wonderful success story) during those early days. As well as Cheryl, Rob and Dan Malcore from the Hyperacusis Chat website for their help and encouraging me to seek out treatment and giving me courage to adventure outside again.
Thank you once again everyone!
Now....time to take that next step back into the real world. Wish me luck!
Cheers,
Kris
My name is Kris from Vancouver BC, Canada. I have been waiting a long time to get to the point where I feel that it would be appropriate to write a "Success story".
This has been a 10 year long journey for me (9 years of Tinnitus and 1 year with H). So this will be a bit of a journey for not only you the reader, but for me as well. My goal of writing this is to give back to this support group - which in my darkest days gave me so much hope and support. If anyone is able to gain a little tidbit of support or hope from this message - then it's served its purpose.
Now, lets get this show on the road!
*Note for everyone: I wrote this out over the course of a month, so I apologize if this jumps around a bit or repeats itself at certain times*
A Little Backstory:
I grew up in a family that loves music. My dad was the type of person who has 600 cds, 700 vinyl disc and lots of music on cassette tapes. Music for me was what would help pick me up on bad days, add energy to a sunny day, and serve as the definition with who I was as a person. Since an early age I would be listening to music through a boom box and into my over-ear headphones. While I always enjoyed rock music, I think I always kept it at a safe level as I have always had pretty sensitive ears.
I wasn't the biggest concert goer, but I went to about 7 or 8 shows when I was in my mid to late teens. I never saw other people wearing ear plugs so I just thought "Well I guess I'm fine then..."
It wasn't until I was 16 (Summer 2005) when I remember hearing Tinnitus for the first time. I was up fishing with my dad and I had woken up in the middle of the night and had to get something from the car. It was DEAD quiet and I clearly remember slipping on my shoes, going outside and then stopping by the car and hearing this "Shhhhhhhhhh" sound. I thought, "Hmmmm, maybe I was just listening to to much music again" and that was it. At that point in my life, I was naive and had just thought that EVERYONE must experience this when listening to music. Plus, I had never even really heard about "Tinnitus" before.
It wasn't until I was about 19 (2009) when I realized that this indeed wasn't something that everyone experiences....
My Realization Of This Thing Called "Tinnitus"
(Spring 2009)
I'll never forget that exact moment when I first realized that hearing sounds like that wasn't normal. I was out on a hike with a friend and I had mentioned to him:
"Oh yea, I really like listening to music while on transit. It helps make the time go by faster. I hate it though when you hear that hissing though, it gets a bit annoying sometimes"
His response was something like:
"Uhhhhh that's not normal"
I started freaking out. He thought it was all in my head because there was NO WAY someone who is as young as me could have T.
I went home and stumbled across a "Tinnitus Help Page" that was run on a Yuku Fourm service. I went on the board (more on this later) and posted my problem and asked the usual questions. "Will this go away, is this normal, will it get worse etc...." Some of the responses were really rough, with some people even saying that it was all MY FAULT. That's what hurt the most - the guilt of the situation.
At the time I was trying to push through my last 2 months of college (I was getting my diploma in Photo Imaging and Business management...aka: Photography). At the time I was shooting for the Vancouver Canucks (NHL Hockey Team) and was spending a lot of nights in louder arenas. I tried my best to use ear plugs and push through. Amazingly I was able to finish my work term there and graduate...but I had just squeaked by without having a mental breakdown.
After school finished I crashed hard into a depression. I tried explaining it to my parents, but they didn't really understand. I slowly picked myself up and realized that I needed to kick my T to the back of the bus and then proceeded to do so. I realized that I could still listen to music, but had to keep the volume even lower (Ex: on a iphone there is 16 volume notches. I kept mine between 3 or 4). I picked myself up, moved to Vancouver Island and lived out there for a year. I had friends out that way; and between dating, working and hanging out with friends I just sort of kicked my T to the back of the bus and that was that.
When I look back on it, I would have to say that mine was still pretty minor at that point. I would hear it if I was sleeping, in a quiet room or forest, had a couple of beers or in situations like that. And thats where my experience with Tinnitus stopped. For about a good 5 years I was fine.
The Volume Turned Up
(Summer 2014)
At the time of this incident I never really thought about my T.....EVER. To the point where I was living with a woman for a year and she didn't even find out about it until after we stopped dating. At the time I was living a normal life. I was working at a smaller Apple store, taking transit, traveling, going to a concert here or there with ear protection; and was living a very normal life.
In summer of 2012 I decided that I wanted to follow a passion that I have had for my whole life - the environment and the outdoors.. I really wanted to have a career with Fisheries here in Canada, or with some sort of environmental or government agency. So I went back to school and did some upgrading and then got into the Recreation, Fish and Wildlife program at Selkirk College in Castlegar BC ( A small town of 6,000). The program had been around for a long time and had a very highly regarded reputation. It was in a very small cheerful town. Time moved a little bit slower and people had different hobbies such as ATVing, shooting, hunting, hiking, fishing etc...
It was during the summer after my first year in the RFW program. I had a friend who was a very experienced, but young trap shooter. She convinced me to go out with her and give it a go. I asked her if she had any of the "earmuff type" of ear protection. She said both her and her dad never used them and only used ear plugs. She went and asked her dad (Think small town close-minded red neck male stereotype) and he uttered the following words:
"Oh, you mean those pussy ear muffs?! No, I don't have any of those. Just use the ear plugs and you'll be fine".
In that one split moment, I put my trust regarding my ears into the wrong persons hands. I went out with her to a small field and did some target practice with her (I won't go into the details because they don't matter).
Anyways, we then proceeded to come back to her house and hang out with her friends and I never really thought about it after. When I went to sleep that night, my T sounded a lot louder. Now I was sleeping out in the backyard in their spare tent trailer, so it was pretty quiet as well. That's when the worrying began. For the rest of the weekend I went on some adventures with her friends, but was mostly worrying about the possible permanent increase in my T.
At the time, I was very stressed because of work, getting ready for school and living with my grand parents (they are very old fashioned to put it lightly) in a small town and not knowing anyone. So wether my tinnitus got worse or not (I'm almost certain that it did); or that emotional connection that I didn't have to my T was now reconnected - it's a bit hard to say.
That's when my life started to unravel. I tried continuing to work, but I was becoming so stressed that I wasn't eating much or able to sleep and had to quit (they were very understandable, and for that I was extremely thankful) my summer job. I moved back in with my parents who lived about 7 hours away and then searched for possible treatment options.
Hopeful Healing
(August 2014)
I don't want to focus on the so called "depressing part of this journey", but I do feel its important to note where I was feeling at this point. I was very depressed, somewhat suicidal and had no hope for the future. I had started to develop Hyperacusis after the gun fire incident. Wether this was caused by the actual sound of the gun, or my extreme emotional state it's hard to say - but I think you could make the argument for both.
On top of that, I also experienced a loud car horn when I went to the mall with my girl friend after returning back to my parents house. It added a fluctuating ringing tone to my usually hissing T in my right ear. Now I should note that this car horn was EXTREMELY loud, and must had been modified in this car. My girl friend (Who also has T as well) who was with me at the time also agreed that it was extremely loud. I have sometimes wondered if this may have caused my H as well - but once again its hard to say.
Around this point (Aug - October 2014) is where after returning home I started looking for some sort of treatment. I tried seeking out some online support groups and found some positive boards (Tinnitus Talk) - and other groups that weren't so positive (more on that later). What followed was a journey of me having to wait until I was able to get into an ENT for a referral to the Tinnitus Clinic at St Pauls in Vancouver BC. During that time, I would only go outside to walk/run at the park near my house. I spent most of my time at home watching Netflix trying to pass the time until I was able to get into the clinic.
When October rolled around, I went to the ENT who said I had a large amount of earwax in my ears. He cleaned it out and even had to use one of those small vacuum cleaners to get all the impacted wax out and he then gave me the referral that I needed to gain access to the Tinnitus Clinic.
Lets Add Some Positive Energy
(Late October 2014)
In late October I was finally able to get into the St Pauls Tinnitus Clinic in Vancouver. It is run by a wonderful audiologist named Glynnis Tidball (Who has Tinnitus herself). You first must go through a group session with about 5-6 other people who have T before you're able to proceed with individual treatment. I was the youngest person by far in the group, as most of the people in my group were 40+.
The session consisted of Glynnis documenting our medical history with our T (How loud is it, do we have any other symptoms, how we got T or H etc..) and providing us with extensive information about T and H and how we can manage it and possibly reduce its impact on our lives. The point of the group session was to help some of the people who only needed that information, and were then able to understand their T and move on with their lives. For someone like me, she recommended trying sound therapy through another audiologist who does the "sound portion of TRT" at a different clinic, as well as booking an individual TRT counseling session with her - as I was a bit more of a difficult case.
I then proceeded to book my individual session with Glynnis, as well as booked a session with Audiologist X (protecting this person for privacy reasons) for the sound portion of my TRT.
I will get into this a bit more during the last part of this post. But I unfortunately wasn't able to find a plan that worked with Audiologist X. I tried the sound devices that the audiologist gave me for the 45 day trial period. Unfortunately while they may have helped my H, they in turn caused my T to sky rocket to extremely loud levels at the end of the night when I took them out. We tried to readjust the plan for how I would be able to reduce/manage both conditions, but there was a lot of miscommunication on the audiologists part that plagued the process so I returned the $3,000 devices and continued on my way.
I went home that night extremely depressed and got a 6 pack of beer, got drunk and was extremely upset at what my life might look like in the future feeling as my last hope for relief had just failed.
Seeing The Flicker Of Light At The End Of The Tunnel
(Mid - Late January 2015)
I was first recommended by Glynnis to go check out Maria at Westside Physiotherapy in Vancouver. As originally suspected by Glynnis (and from what I remember growing up) I have a TMJ issue where I "clench" my jaw at night. This problem only increased and got really bad after my exposure to the gun fire in the summer as it seems to fluctuate with my stress levels. I ended up seeing Maria for 4 visits. She helped first show me how proper posture makes a big difference (as we all know, that upper shoulder/neck/jaw area is all connected), how to massage my jaw muscles and how to realize/correct when I am subconsciously clenching my jaw during the day. Overall, she was a BIG help and I can see myself going back to her in the future for a tune up or two.
Finally in late January I was able to see Glynnis for my 3 hour marathon TRT Counseling session. We sat down in her office (with my mom taking notes) and started the session.
Here are some of the main points that we touched on:
- She identified where my H sensitivities (Loud sudden sounds: Dog Barks, Car horns and real HIGH frequency sounds from electronics) are, and how long I've had tinnitus for.
- We went over what LDL tests are and how with her she says that she finds that she gets more information from actually talking with the patient. If it's really needed, or if the patient insists then she will do one - but normally doesn't as she doesn't like causing pain to the patient if it's not needed.
- We tried to pin point where I have other areas that may hold me back from habituating with my T. For me (especially since I realized that I have T) I have a habit of catastophising health events and in turn always think the WORST case scenario will happen (ex: My H will ruin my quality of life, making my T worse and pushing me to suicide).
- We went off into a sound proof room and she did some tests on my ears. She did a BEAR Test (I believe that was the name, but can't remember for sure) which is able to tell at what health the hairs in your ears are. She said that I have "beautiful inner ear hair" - that made me laugh
- We didn't do a hearing test as I had 3 in the summer and they all turned out "normal"
- She said that she has a feeling that my H was caused by the extreme anxiety that I had leading up to AND after the gun incident. It should be noted that once I started to get a control on my anxiety, my H started to minimize a bit and overall has continued to do so.
- We talked about protection and covered some of the normal talking points. Wearing plugs at concerts, and in louder situations, what heavy duty protection looks like and when it should be used etc...
- When I asked her opinion on when it comes to H and why some people get better and others don't. She said while new research is being done - it's still in its infancy. But from what's been researched so far. It seems to come down to the auditory, physical and psychological characteristics of each patient - but still so much of it is unknown.
- Said that Cognitive Behavior Therapy is a big help with some people who have T.
- Recommended that I stay as active as I can. Yoga, Running, Gym etc... it plays a big role in overall health as well as releasing all those lovely endorphins.
- She believes that I had pre existing H, even before I realized it this summer. That either the gun, but more likely the stress of the incident caused it to get a lot worse as I have no physical signs of damage from any of the testing that was done.
To say that Glynnis helped me is a huge understatement. I now see why Dr. Nagler says that the counseling part of TRT is almost more important then the sound therapy in a lot of cases.
For me, it gave me the time to have many of my questions answered, and to have an open conversation about both of these very mysterious conditions with someone who has been working with patients for 15 years. I found that after that long conversation I was now given some basic tools that can help me manage and move forward with both of these conditions.
Moving Forward... (March 2015)
I've now come to the point where I've reached a fork in the road. Do I continue to just stay inside and live a very sheltered life. Or do I take that first step towards living a somewhat normal life again.
What's the alternative? Live with my parents for the rest of my life? What happens when they pass on? Yes, it's really scary sometimes at the thought that my H could come back and be as bad as it once was - or maybe even come on worse. But at the end of the day, I feel pretty good and just have some more mild sensitivity to high frequency sounds and loud dog barks that cause some discomfort and can make me jump once and awhile.
I can protect myself to the best of my ability, but who knows what can happen in life. I could also die from a car crash, an aneurysm, a heart attack tomorrow, and so on and so on and so on.....
Am I bit bummed that I can't listen to music through head phones anymore, or go to concerts - yea a little bit. But I am SO VERY THANKFUL for what I am able to do. Plus if there has been any silver lining to this whole situation, it has given me a chance to spend a lot of time with my parents and create some truly wonderful memories that will last a lifetime. I truly count them as two of my closest friends that I have in my life.
Currently, I am now preparing to return to my previous summer job as a park patroller, and move in with my girl friend (we are currently doing a long distance relationship after meeting last summer). I am also following up with another TRT clinic on Vancouver Island to see if I can try TRT with another audiologist named Robynn (More on her later) with the hope of completely reversing my H and seeing if I can get rid of this more mild sensitivity that I have now.
My end goal is to be well enough to return college and finish up my schooling that I had started last year at Selkirk College. I am just trying to take this one step at a time and hopefully with a little luck, I'll be able to return to a somewhat normal life.
Tips, Tricks and Opinions:
I wanted to include this at the end of my story. As I have been dealing with T for a decade, and H for almost a year now and feel that I have some information that could be of use to some people with T or H.
I want to state that I am not a doctor, and have no medical training. So it's important to follow whatever your doctor or audiologist instructs you to do. You can take what you what want from this, or choose to ignore it or skip some of these points - but I feel that I have some important lessons to pass along.
Dealing with younger people who have T: I'm a very motivated and driven person and at the time when I first got T, I only really briefly explained it to my parents what T was and just sort of took some precautions and kept pushing on with my life. However, I never really took the time to explain IN DEPTH to my parents what I was going through, what T is and about what I had researched.
When you're young, you don't ever really want to feel different from other young adults who are the same age as you. Thus pushing yourself to go to events such as clubs, bars, concerts or certain events that may cause your T to get worse. I feel that if I had explained that to my folks and friends a bit better, then they would have understood and maybe been that safety net where they could said "Hey Kris, do you think that is such a good idea? What about your T?" etc...
Try dealing with the H first: When I first got my H, I was a mess. I was afraid of every little sound as so many sounds in my environment caused me discomfort or pain in my ears. It wasn't until I was able to control my anxiety that I was able to achieve some form of progress. If you are someone like me who has H and T, I would say if you are not able to reach a clinic for assistance with these conditions, then do what you can to help manage or reduce your H. I say that as once I was able to notice a reduction in my H (and TMJ) that I in turn felt better about my T and was able to finally make some progress.
It seems for some, "progress" can be achieved using different methods. Stress control, massage, sound therapy, TRT counseling, CBT or just simply TIME can help. It can be extremely frightening in those early days. But at the end of the day you need to do what you need to do to help protect your ears, especially during those very sensitive early days. I know for many this is easier said then done.
If you feel uncomfortable DON'T do it: As I mentioned above with the story regarding the gun. In that moment I knew that I was uncomfortable with the situation and that it probably wasn't the best idea for me to be firing a gun. I should have listened to my gut and said "No". It took me a long time to get over the anger, regret and frustration, but overall I have been able to move on from it. It has taught me a very valuable lesson though regarding listening to your gut and if you don't feel comfortable with a situation, then just politely say "No"
Since having H, I have learned now more then ever how important that lesson is. There have been situations with friends, audiologists, parents and my girl friend where I have had to say "No" to certain situations or take extra precaution - and in some of those cases it caused a lot of frustration on their part.
But as Glynnis has said to me, at the end of the day it's MY ears (and brain) and you are the only one that knows how they are feeling. I have made progress since my original diagnosis, and I hope to continue to do so. As I explained to my girl friend one night:
"Right now, being this cautious is my reality. I hope for it to be a short term reality, but it is mine right now none the less. I am going to try and get out more in the world, as I have already been making some great progress with my sound tolerance increasing already. My main goal is to be able to live with you, and also hold down a job. For many people that sounds simple. But for me it's a large step that will have it's own anxieties and fears that go along with it. Hopefully, like when I've taken previous steps before, those anxieties will be resolved as I continue down this path towards a more normal life.
I can't promise that it will be smooth, and I ask for some extra support and understanding right now as I make this transition back to a more normal life. I know you are fearful that there may be a repeat of last summer - but I need to do this. My H is more mild right now and to be honest - what other option do I have. Right now I can try my best, be smart with my ears and follow the advice that has been given to me by my audiologist and just hope for the best"
This was my response to us possibly having a night out with some of her friends and I had to say "No" to it. She understood but was worried about the future. Once I explained this to her, she understood. We are both moving towards that goal together now.
Once I am able to hold down a job and live with her, then I plan on going out to restaurants with her, frequenting malls more (I already do now), walking down streets without worrying and only using protection when its needed. Wether it's with your partner, audiologist or anyone else - communication is key to help reduce as much frustration as possible.
Finding Appropriate Support: Very early on in my journey with T I did what a lot of people do and seek out online support. I found two support groups that I thought would be able to help give me support as I tried to figure out how to progress onwards with my life. However in less than 24 hours, I saw nothing but very depressing posts. As well as people blaming other posters for them being foolish and not protecting their ears, bickering on opinions and some giving misinformation.
I soon realized that this was doing me no good and tried to stay away from them. I eventually found "Tinnitus Talks" and the "Hyperacusis Network" and I have recommended them to other as these boards focus more on the support part while trying to maintain a positive attitude. Those are just the two that worked for me, but there are many other boards out on the web which can serve this purpose as well.
Finding a Good Audiologist: Like with many things in life, finding a good restaurant, doctor, audiologist all have one thing in common (Ok, besides the food element), they usually have good customer service. When I was searching for an audiologist very early on I was lucky enough to come across a couple of good ones....while also coming across a couple bad ones. What usually separated the good ones from the bad ones was an audiologist who can be open and honest with you, answer your questions to the best of their ability, and if they can't help you directly - then at least they can hopefully steer you in the right direction.
I remember one audiologist who was trying to help me with my H would throw out statements like:
"What's the matter, you don't trust me? (when I asked questions)"
"Really all you have to do is this, this and this and you're set. This really isn't that hard!"
(This audiologist said that statement when it came to discussing a treatment for my Hyperacusis!!)
The point that I'm trying to make is that if you feel uneasy with an audiologist, doctor, or even a restaurant - then it's time to find a new one. (I know that not everyone is able to travel to or can afford it. Which can make things more frustrating).
Now if you contrast that to when I spoke with Robbyn Brodie an audiologist from Vancouver Island and has a TRT clinic. Firstly, she returned my phone call and answered all of my questions and gave me 30 min of her time for free. We talked about the TRT that she administers at her clinic - which follows more in line with the TRT protocol and would be a better fit for me. She jokingly said that she hopes that I DON'T have to come see her, but if I do then her door is always open for me.
I remember sometime during our conversation, I was worried that I was taking up to much of her time and she just simply said:
(FYI for anyone that doesn't know Canadian geography. I live in Vancouver and her clinic is on Vancouver Island. To get there you must take a hour and a half ferry and drive for about an hour to get to Victoria - which is where her clinic is).
"If you are willing to travel across an open body of water to come see me. Then OF COURSE I am going to try and help you and answer your questions before coming. That way we can set you up for the best possibility for success."
BHAM, that right there at least showed me that she has a skill set (Communication skills) that is sadly missing with many medical professionals these days. She was empathetic, honest, kind, genuine, not acting like she knew everything about H and T and ANSWERED MY QUESTIONS (To the best of her ability).
Currently, I have a couple appointments booked with her in April to try and start the sound (and probably a little counseling) portion of TRT again. While I am a little afraid that it could do the opposite and set me back a bit to where I was before. I obviously want to try and get FULLY better...and this may be my best shot at it!
DIY (Do It Yourself) .
I am firm believer in if you want change to happen, then YOU need to make it happen. One of the biggest knocks that Tinnitus and Hyperacusis has against it is usually when people overcome it - they in turn stop talking (and in turn stop supporting) about it! In many ways thats one of the biggest hurdles that both of these conditions have in regards to getting funding for research.
For me, I plan on supporting both the American Tinnitus Association (or you can support another Tinnitus Organization) and HyperacusisResearch.org. Through talking about these conditions I have had many friends and family donate to these organizations and get involved in the conversation - especially when it comes to being smart with protecting your ears. In the future I would like to see if I can pull together a charity run, or another kind of event to help raise money and awareness for both of these conditions.
I am really stoked to see people like Markku and his team on Tinnitus Talk and how they are doing an amazing job creating a resource for people who have T, H and PT. There is also up to date information on new treatments, funding options and so much more!
While I hope one day there will be a cure for Tinnitus and Hyperacusis, what I would more so like to see is another form of treatment besides TRT be created. Especially for people that don't respond to TRT and need another option. I am a firm believer in science and am encouraged by much of the new neurological research that is being done and how research into one condition (ex: epilepsy) could help another (such as T or H).
Who Your Real Friends (and Partners) Are
Many people are afraid of illness - especially young people. When I was first diagnosed with my H and T it made it very hard for me to be able to see my friends in the city. A couple of people who I considered to be closer friends came out once or twice and that was about it. Amazingly, two friends who I wasn't as close with totally stepped up and took me out on hikes, hung out with me at home and many other things. For that, I am extremely touched and thankful to say the least.
Having a condition as unknown and frustrating as T and H is hard for a lot of people to wrap their head around. You may end up losing a couple of friends, but hopefully the ones that really matter will show their true colours and come through for you. I know in my case I am extremely lucky to have the couple good friends that I have in my life, a wonderful girl friend and very caring parents who have supported me and kept me motivated through out this whole process.
Sorry, I Don't Care What You Think
Anyone with T or especially H can relate to this.....
You're out at a parking lot, concert, subway etc... some situation that require protection from very loud noise. Someone then comes up to you and asks "Why do you have ear plugs in?!" or maybe they give you a weird look like you're some type of leopard for wearing ear plugs in public. Well for many of us these are situations that we've experienced and they can cause feeling of frustration, shame or sadness.
In those situations I used to feel many of those feelings. Now I just don't give a f*ck anymore (pardon my french). If there is anything that having these conditions has taught me, is that you need to do what's best for your ears - no matter what people think.
There have been some situations where people have asked me to take my headphones off, or in some cases even openly mocked me once or twice. In most cases I have gone back and explained my situation to those people, and in most cases they apologize profusely and now have a new understanding of what an "invisible" disability looks like (This is more of an issue with people that have H).
I just don't care anymore. If you think I'm a bit off for wearing ear plugs in public then COOL - I don't really care! My parents, girl friend, friends and family know whats going on with me, and those are the only peoples opinions and thoughts that I really care about.
There's Different Flavours of Tinnitus and Hyperacusis....sort of.
Over the years I've been reading many different variations on peoples accounts of their Tinnitus and Hyperacusis. Different pitches, volumes, frequencies, sensitivities etc... everyone seems to have their own flavour.
Until we are really able to come up with a way to know how both of these conditions originate and how to treat them, I feel like it will be only then that we will know the different variations of these conditions. Or why some people who get T after only just one concert, while someone like my grandfather who has had MASSIVE hearing loss and uses very strong hearing aids (He hunted growing up, worked in a mine for a decade, and then a factory after with no hearing protection) yet has no T or H. Or why is it that Hyperacusis that is caused by Lyme Disease or strong oxitoxic medication seems to be so much stronger and harder to treat.
While I know that this thought is often debated, I think the main point for everyone to take away from this is that if you need help, then it's important to seek treatment, get diagnosed and hopefully be able to come up with some form of treatment that will HOPEFULLY obtain some sort of relief from your T, H, or both.
Wonderful Motivational Stories:
I am someone who really likes hearing inspirational stories, as they help me motivate myself in trying times. I wanted to pass along some of these stories that really made me look at my own conditions and how I can hopefully overcome them. Here are a couple that gave me a lot of motivation and drive to fight back against my Hyperacusis and Tinnitus.
Rebecca Alexander: Rebecca is a young woman who has a condition called Usher Syndrome III which causes the gradual loss of her eye sight and hearing. She has AN AMAZING and honest book called "Not Fade Away". It is a extremely interesting and motivating book that profiles her life and condition, as well as how she plans on moving forward with it. She currently has only 10% of her vision left, and was implanted with a cochlear implant so she will have some form of hearing. However, it makes most sounds sound very "Mickey Mouse" as she puts it. I should also note that she ALSO on top of all of this has TINNITUS, and body pain from an accident where she fell out of a second story window and survived. Yet she keeps a very positive attitude and continues to thrive running her own psychotherapypractice and trains for events such a marathons and other physical events.
I found her book to be extremely inspiring. I just thought to myself, if this woman can handle all of these obstacles and continue to thrive and move forward, then I need to try as hard as I can to overcome both these very mysterious and debilitating conditions.
Melody Gardot: When Melody was 19 years old she was hit by a car that was making an illegal turn. She suffered extremely serious injuries, to the point where she couldn't leave the hospital for a year. She suffered many broken bones that still to this day requires her to use a cane. She has light sensitivity issues and has to deal with severe tinnitus and hyperacusis.
Through many different therapies she was able to recover somewhat, but still deals with many of the injuries to this day. However, through music therapy she was able to find some new found joy in her life and after a couple of years she tried singing some songs of her own and continued pushing towards a new goal of becoming a singer. One thing lead to another and now she is a grammy nominated jazz singer. She went after her goals and continued to push forward even after having to overcome (and still on a day to day basis) EXTREMELY difficult obstacles.
Dr. Nagler: Very early on I got to know Dr. Nagler through his "Doctors Corner" section on this website - where I peppered him with HEAPS of questions very early on which he graciously answered (Thank you doctor!)
It wasn't until I learned about his story that I really found strength and great admiration for the support that he gives to many of the people on Tinnitus Talk. I was taken a back by the story that he told about how even on the famous boat "The Maid of The Mist" which cruises by the foot of Niagara Falls, and how he can EASILY hear his tinnitus through the wave of sound emitted from the falls. That BLEW ME away, as my tinnitus can still be masked by running water and the shower.
He also recently had a change in his tinnitus after it staying the same for about 20 years. Like many of us, he reached out for support and I was really stoked to see people reach out and give him support right back. He was able to once again find relief through TRT and from last I heard is now back to living a normal and happy life (and even went out for Thai food, which usually kicks up his T a bit temporarily).
I am very grateful for the support that he gives on Tinnitus Talk, and helps give good general information, and steer people in the right direction if they are asking for good TRT clinics or audiologists.
Wrap Up
I am now going to try and transition from this more solitary life to one where I will be working and living on my own with my girl friend. I am moving back to the city where I worked last summer where I hope to transition back to my job as a park patroller and start a new life with my girl friend. I know it won't be easy and I'm sure there will be set backs along the way. But I know that my sensitivities have gotten better and hopefully will continue to do so. Luckily my job keeps me away from cars and has me in quiet parks most of the time. Plus dog owners usually keep their dogs in line around me since I'm a park patroller - so that usually means less barking
As mentioned above I am going to try TRT again with Robynn and hope for a better result compared to what I had with Audiologist X. I feel that I have sort of plateaued in regards to sound tolerance gains and will see if this might allow me to recover fully from my H - instead of still having this mild bit of it left along with my T.
I hope for anyone that has read this that they were able to find some form of support from this. I can honestly say that for me it has gotten better with time and I hope that in continues going that way. I still have some bad ear days, but now I am mostly having good ear days.
I would like to just take this time to thank @Dr. Nagler , @billie48 (Especially your success story that I still refer to from time to time), @RCP1 and @Claire43013 (As well as your wonderful success story) during those early days. As well as Cheryl, Rob and Dan Malcore from the Hyperacusis Chat website for their help and encouraging me to seek out treatment and giving me courage to adventure outside again.
Thank you once again everyone!
Now....time to take that next step back into the real world. Wish me luck!
Cheers,
Kris
Member
