January 24, 2016

The People →
Bekah

32 → Kitchener, Ontario, Canada → Photographer & Web Designer → Tinnitus → Audiologist, Tinnitus Therapy.

1. Developing Tinnitus

R: Hey Bekah, we’re back again, but this time for the ringing in your ears. I’m really sorry, I know the hell! Firstly, How did you get tinnitus?

B: It originally started in late 2005 following a root canal. At the time it was so quiet that I had to be in complete silence and strain a little to hear it. In 2012 it became much louder due to an antibiotic I was left on for way too long.

R: How long have you had Tinnitus in total?

B: Approximately 10 years

R: Your tinnitus was caused by root canal! Did you sue the dentist?

B: I had to sign a waiver before the procedure. I was assured this was common practice in all dental offices. Of course later after I left him and went to a better dentist I found out what he told me wasn’t true. I could have sued him for more than just the tinnitus! I decided to just move on and deal with the situation at hand. He is well aware of what has happened.

R: How has your tinnitus developed over the years? has it got better or worse?

B: It’s worse and it could have been prevented. Much like the dentist, I trusted the opinion of my family doctor. She kept me on an antibiotic called Macrobid for much too long. That drug attacked my nervous system worsening my Fibromyalgia and made my Tinnitus go from a soft whisper to screaming 24/7. I did some research and discovered that this medication shouldn’t be given to anyone with a chronic illness, especially long term, as the risk of nerve damage, organ damage/failure, even death are incredibly high. This was confirmed by the FDA. The drug manufacturer refused to speak with me. I connected with other Fibro. patients who had their lives flipped upside down from this drug. As I mentioned earlier, my doctor and the medical board refused to do anything about her negligence.

R: What does tinnitus sound like to you? For me it’s a high pitch scream, like a banshee.

It’s a high pitched ringing with some high pitched squealing mixed in. The volume fluctuates depending on how fatigued I am or if I’m stressed. It tends to get louder when it rains as well.

2. Tinnitus & Daily Life

R: How does tinnitus affect your normal day?

B: My days vary. Some days the ringing is much quieter so I can push it to the back of my mind and live a rather easy day. Other days it’s loud and demands attention. Those days require a lot more effort to push it aside and focus my attention away. I’m hypersensitive to sound so I have had to take some steps to lessen my annoyance. For example we have lined the back of our fridge with fireproof sound absorbing insulation to quiet down the noise of the compressor. It makes a high pitched ring that my tinnitus likes to compete with. The insulation takes that sound almost completely away. I also put a piece under the PVR box for the tv to muffle the humming sound it makes. Don’t even get me started on the insanity that came when we needed a new furnace! Thankfully that after A LOT of adjustments, frustrations and tears we found some solutions and I have for the most part adjusted to the things I cannot change. Appliance and electrical noise and my tinnitus don’t mix. Most people don’t even hear these sounds but for me they are extremely loud. My audiologist and I discovered that I have very acute hearing and can hear things most people can’t.

R: When you wake, is the ringing immediately present?

B: Always.

R: When you go to sleep is it still there?

B: Again, always. It’s become my noisy little gremlin that follows me everywhere. Unlike the cute and cuddly gremlin Gizmo, mine is more like the evil spawn of Gizmo. It’s not here to make you laugh, it’s here to cause chaos and I have to fight hard to keep it from running amok.

R: If you had the option to lose your Tinnitus would you?

B: In a word? YES!! Who wouldn’t want to get rid of the noise?

R: How does Tinnitus affect your work?

Luckily I can do my art from home so I can be in control of the sound in my environment. There is no way I could work outside my home in an office or a store. There are way too many sounds, too much sensory overload. I can hear fluorescent lights hum and they all play their own tune. Every click of a pen, every voice, every single possible sound, I pick up on it. It becomes a symphony of disarray.

3. Tinnitus & Music

R: Do you still go to concerts? If so, do you use protective earplugs?

B: I do! I can’t give up concerts, I love music too much. I have always worn ear plugs even before chronic illness. I use Vater musicians plugs. They provide excellent hearing protection without losing sound quality. Much better than typical foam plugs. I even wear them at the movies, it’s just too loud otherwise!

R: Do you listen to music using headphones? If so, does that worsen the ringing?

I do but I keep the volume as low as possible. I use them every day in fact. I’m doing tinnitus sound therapy that requires me to listen to customised music on headphones 1-3 hours a day. So far it has not made the ringing louder.

R: Can you remember what silence sounds like?

B: Not really! I don’t remember what it feels like to be normal and pain free either.

4. Treating Tinnitus

R: How do keep the ringing under control? 

B: When it first became loud I had a fan running constantly in the bedroom. At the time we lived in a condo with a very open concept layout with exposed ventilation pipes. They provided the best white noise! We have since moved into a house. Now I run a fan in the bedroom plus use a pillow speaker that plays rain beneath my pillow. In the main part of the house I have a sound machine that is like a crackling campfire. I have discovered food triggers such as MSG, maltodextrin, artificial sweeteners and sulfites make the ringing louder for a good 10 hours or so. Keeping myself distracted helps a lot, anything that can focus the brains attention away from the ringing. Gentle exercise such as walking is beneficial for me as well.

R: Have you been to a specialist for Tinnitus?

B: I have and he’s incredible! I found him on my own by searching for audiologists/tinnitus specialists in my area as my doctor at the time had completely shut me out and I was on my own trying to help myself. Calvin communicated with me by email for quite some time before we met in person. I had so much going on with my medical situation and we were in the process of moving so I decided it would probably be best to see him once all those things had calmed down so I could focus more attention on treatments with him. The fact that he took time out of his busy schedule to chat with me before I became a patient really meant a lot to me, not many people in the medical community are so kind and eager to help any way that they can.

R: Have you managed to find good doctors who are aware of / or have great knowledge of Tinnitus?

B: My former doctor was a nightmare. She would tell me to just “get over it” that it’s “just a bit of noise”. Easy to say when she isn’t the one dealing with it! I left her in the late spring of 2014. My new rheumatologist and family doctor both have more compassion about tinnitus and how it affects their patients. Tinnitus can be common in people with Fibromyalgia and other rheumatoid or autoimmune disease. Seeking out Calvin on my own is one of the best things I have ever done for my health. I have not met anyone who is so understanding, patient, and goes above and beyond to help his patients. He’s always just a phone call or email away. His staff are amazing too. My first visit with him was around two hours long and he spent a lot of time sitting with Daniel and I chatting, getting to know us as people not just patients. His understanding of tinnitus is truly excellent and he engaged us both in conversation and created a very comfortable, friendly learning experience for the both of us. Just knowing that I have support, that what I’m going through is normal for a tinnitus patient and that my tinnitus isn’t something to be afraid of helped me calm down a lot. We did extensive hearing tests and I am happy to know that I do not have any hearing loss. So I felt much safer settling upon the decision that the antibiotic is what caused my tinnitus to worsen, it’s neurological, the drug went after my nervous system.

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R: Did any treatments work?

B: Calvin offers a type of tinnitus therapy called Sound Options. It’s a Canadian created company and currently this therapy is only available in Canada although there are similar programs offered in the USA and abroad. With Sound Options I went through tinnitus pitch matching tests with Calvin. He sent my results off to the people with Sound Options and they created a custom music program for me. The music is classical and it’s tuned to my personal tinnitus pitch. I listen to my music 1-3 hours a day on headphones. It helps teach my brain to focus away from the tinnitus and listen to real sound. It has greatly reduced my stress levels and really does help me learn to focus my attention away from the tinnitus. I started the program in the spring of 2015 and have only missed maybe a handful of days. Those days that I missed, I definitely noticed a difference in my tinnitus volume. When I am consistent with the program the ringing is quieter. Sound Options along with enriching my home with soothing sounds and keeping in touch with Calvin have made a massive difference. I have a sound machine running in the main part of the house 24/7, it sounds like a crackling campfire and fills the house with this background noise that allows me to tune out the tinnitus as best I can. I’ll play music during the day sometimes too. Our cable tv package also includes many radio stations. My favourite is the spa channel or nature channel. They play gentle instrumental music along with nature sounds.

R: When was the last time you felt rested?

B: Truly rested in the way that a regular person would feel, it has been years. I have my own version of “rested”. It’s the days where fatigue doesn’t hover over me like a heavy, crushing cloud. It’s been a while since I have felt my own version of rested. At least a month or more. I’ve been going through some medical issues that have been rather stressful.

R: To deal with my Tinnitus, when I listen to headphones I turn the volume low, and the bass equaliser low,  how do you best manage your Tinnitus? 

B: Like you, I guess in a way I just deal with my tinnitus as well. The sound therapies and education from Calvin have helped me make progress with managing my tinnitus and has given me a better quality of life. Keeping active, watching those food triggers, trying not to become overly stressed or exhausted. Sometimes it’s the little things that make the most difference. Every day is different, some are harder than others, I have to keep reminding myself on those bad days that it isn’t going to stay that way forever.

R: Do you do any other sort of therapeutical things like medication, yoga or alternative medicines to help?

B: There really aren’t many medications out there that specifically help with tinnitus. If a patient has a certain medical condition that can cause tinnitus then dealing with that medical condition could help reduce or eliminate the tinnitus, it all depends on the individual. For me sound therapy, gentle exercise, and relaxation are most beneficial. Sometimes my tinnitus can increase if I have tension in my neck muscles. In that case heat helps relax the muscles and settle that particular part of the tinnitus. There has been a lot of talk about Ginkgo helping tinnitus but it’s not an option for me, it interacts badly with my other medications and could cause seizures when mixed with them. I sleep with a night guard for my TMJ. That helps reduce tension in my jaw joints and muscles.

I recently discovered that the Gabapentin I take has been making my tinnitus louder. I did a trial run of lowering the dose and once I was completely off the medication my tinnitus did lower somewhat. Unfortunately my pain became so unbearable that I had to go back on until I could see my doctor again. When we did meet we discussed options and we are going to try weaning me off Gabapentin in the new year and replace it with a similar medication that can be beneficial for nerve pain but does not have tinnitus or any hearing issues listed in the side effects. Gabapentin has tinnitus, hearing loss and ear pain as a “rare” side effect. Just because a side effect is considered rare doesn’t mean it can’t happen! It took nearly a year for this side effect to appear for me. Here’s hoping that I will have success!

R: For a while, I thought I was going to lose my mind with tinnitus, it was so loud, and the ringing inescapable. But over the years it resided enough that I only go mad at night before sleep when my head is on the pillow. Do you feel like you can handle your tinnitus? 

B: I know that feeling! In the beginning it was very distressing and frightening. I felt very desperate and probably would have done anything to make it go away. Having a sound follow you everywhere you go is beyond irritating and downright cruel at times! Educating myself and working with Calvin really helped me gain control and showed me that I can coexist with my tinnitus. Of course I have good days and bad, we all do, but now when I have those bad days I know that I will still continue to have good days. The bad days won’t last forever. Stress is awful for tinnitus and the more we focus on our tinnitus the louder it can seem. When we worry about our tinnitus our brain perceives it as a threat and then wants to keep tabs on the noise so what does it do? Makes it louder of course! It’s the fight or flight response.

5. Being Proactive

R: Do you tell friends, family and colleagues that you have Tinnitus? 

B: Absolutely, just like with my Fibromyalgia, I need to be open and honest about what’s going on with me.

R: Do you know others with tinnitus?

B: I have an aunt who has battled tinnitus ever since she had her wisdom teeth removed as a teen. My mom says her ears ring. A friend of mine and Daniel used to be a DJ and has tinnitus in one ear. Recently a few new members in my Fibro. support group have mentioned that they have Tinnitus as well. It’s comforting to know that I am not alone.

R: How do you educate yourself on management and resources? Do you read specific blogs, magazines or news articles?

B: I have on occasion explored some blogs and message boards and every now and then I’ll enter tinnitus into Google and hit the news button to see any new research or studies being done. Back when my tinnitus first became bad I researched non stop. I think that was both helpful and harmful. Doctors and patients all have their own personal experience with tinnitus so it can get confusing, scary and stressful really fast. My audiologist has educated me the most and really helped to get me on a better path.

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R: Have you recommend and books about Tinnitus?

B: The most helpful book I have read was recommended to me by my audiologist. It’s called Tinnitus Treatment Toolbox: A Guide for People With Ear Noise by J.L. Mayes.

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R: I know you’ve seen Archer – I love it. It is so good that, finally, a cartoon pinpoints the fact that a gunshot next to the head would be really loud! Any other online resources on tinnitus such as Youtubers or bloggers?

B: I laughed so much when I saw that episode of Archer! It’s not often that we see tinnitus referenced in tv or movies. The blog I follow the most is on the Sound Options website to follow the progress of their studies and clinical trials.

A blog titled “You Rang? Talking Tinnitus” is great, definitely follow the link in that one to read the full story.

This episode of Ted Talks titled 5 Ways to Listen Better was passed along to me by my audiologist. The exercises suggested at the end I think can be very helpful for tinnitus patients since we often get stuck listening inside our heads.

6. What’s next?

R: What are your 2016 plans for Tinnitus?

B: Hopefully I will have some luck when I change medications. Other than that I am just going to carry on with my Sound Options therapy and the established routine I already have. My audiologist is looking into adding another sound therapy option to his clinic in the future which I am for sure interested in trying.

R: Any thing else you’d like to add?

B: To those living with Fibro, Tinnitus, or any chronic illness don’t give up! Be proactive, be your own advocate and seek support from your peers. To those who love someone with a chronic illness, please ask us questions and get to know our illness. Remember that we love you. Please do not judge us or put us down. We are doing the best we can. Our lives are not like a Lyrica commercial.

R: Thanks Bekah!

Credits
Rodger Hoefel in conversation with Bekah
Cover Photo by
Bekah

 

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