Tinnitus Memoir

Hello all fellow members hope everyone is well. I've been struggling with T and H for 2 years. I've had some horrible spikes, while dealing with it I wrote in my journal. Although writing doesn't cure my T and H, it however helped me endure it and express myself. I've decided to share pieces of my journal into a memoir about my struggles.(only posted on here). It includes everything even my experience on this site and how the support has been helpful over the past year. If you have the time to read it hope you like it. Again hope everyone is well. Also sorry for any misspelling or grammatical errors, remember its just pieces from my journal.

Living with a monster called Tinnitus:

By: Anonymous/Tinnitus Sufferer


My tinnitus is like a grenade, ready to blow up at every given moment. It does not let me rest, not even in my

sleep. My worst fear is that it would even haunt me in my dreams. Ever since my tinnitus decided to host

my brain, my dreams has been the only place for tranquility where there is no ringing. If that is taken away

from me I will lose my sanity. It feels like there’s an electric field passing through my ear 24/7, completely

resistant to go away. It unmercifully shuts off your once known “Life”, the only thing you can feel is a dark

wave, consisted of pain, agony, and torture. How do you live with this? That’s what I’m still trying to figure

out. I am living in bitterness; everyday is a struggle with this condition.

My Life will never be the same as long as my tinnitus is intact. I only get about two to three hours sleep

average. I can’t read in silence anymore, can’t watch T.V. the same way without lowering the volume to such

a low point. Did I mention that hyperacusis joined the party? Hyperacusis is Tinnitus’s accomplice in crime.

It’s an increased sensitivity to everyday sounds. It make’s loud sounds hurt, very uncomfortable. Imagine it is

already difficult living with tinnitus but when hyperacusis tags along its doomed to create catastrophe.

In fact the extent that we tinnitus sufferers are willing to go for relief is a bit extreme. For instance on the

Tinnitus Talk Forum I visit to reach out to other sufferers and keep up to date with research news and

treatments; was where I read some of these terrifying experiences. The following is an excerpt from a

member on this forum: “undergoing treatment “they did a caloric test (they put water cold and hot in both

of your ears to see if there is an issue or an imbalance), it was the most horrifying thing I ever experienced...

you have to wear goggles so everything is completely dark and the water in the ears made me feel like I was

falling in the darkness of outer space”. Here’s another: “You have to sit on a chair and they spin you and you

puke even it retrains the brain, it’s the same tactic ballet dancers do so they won’t get dizzy when spinning

over and over and over…..” “The worst symptom of vertigo is the brain creating this panic anxiety attacks

repeatedly because your brain doesn’t recognize all that spinning, so it gets into this run or fight mode.”

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From those horrible experiences, what was shocking to me the most was that the person was

able to embrace their endurance with tinnitus; “I am leaving it all behind now, I have to say I

became stronger as a person, more resilient! The tinnitus is like a scar left from the war to

me.”That statement is very encouraging and also very unlikely at the same time. Yes this

condition can make you stronger but you will have many worse than good days. It’s a battle

between ups and downs, and we are all soldiers in this war. This experience has made me

realize that with every challenge life’s throws at us there’s a great story that underlies it.


On the tinnitus forum we all relate to each other, our condition, symptoms, and all the troubles.

We don’t just get tinnitus; in some cases we get hyperacusis, anxiety, insomnia, and several

other conditions. Tinnitus comes with this excess baggage. It’s on the forum where we get to

express how we handle all this, and tell each other’s ways to cope with it better. It’s great to

reach how to people who have this condition and understands it makes us feel a little less

alone.

During times like this with setbacks and no hope, a member on the forum would pray. For

example: “Father, in the name of Jesus please help me and my friends recover from this

affliction called tinnitus. I pray that we all have a speedy recovery, and all come back to give

you thanks.”


Tinnitus is becoming a growing problem for millions of people around the world. If you don’t

believe this look it up and see for yourself, the issue here is not many people are aware of this

condition. Some people tend to learn about it after they get tinnitus, when it’s too late. This

needs to be changed, people should be more aware of this condition; what causes it and ways

to prevent it. Tinnitus is like a headache can be caused for various reasons, but it’s very

important to keep in mind to protect your ears whenever possible. Especially the youngsters

who constantly listen to loud music with their iPods and other devices. Clubs and concerts are

two of the worse places where people end up with loud ringing in the ear that doesn’t subside.



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On some forums talk about how they are developing a cure soon but it is uncertain. Tinnitus is

comes from the brain not the ears which makes it harder to find a way to control it. Doctors are

still baffled by what triggers it, however they are more knowledgeable about it now then in the

past. There are all these myths of supplements that could help like ginkgo biloba, herbs, and

even antidepressants that stimulate the brain. However these are not cures and can only do so

much, in some cases it give a bit of relief but to no avail. Remember one thing there is NO

cure………. So this is a life term condition, like a doctor once wrote terrifyingly “tinnitus is not

something that you die from, it’s something you die with”.


It was recently determined that one of the most famous painter’s in history; Vincent van Gogh

had suffered from tinnitus. In fact it was shown vividly in one of his paintings that he had cut off

his own right ear in a desperate attempt for relief. It was even noted that Martin Luther and

many other historical figures had tinnitus. It just goes to show that tinnitus had been

problematic even centuries ago but it just was never known. I don’t understand how such a

condition can go on for so long and yet there’s no cure? What make it worse are that doctors

still don’t fully understand tinnitus.



Now in recent time’s even celebrities have tinnitus such as: Keanu Reeves, Cher, Ozzy

Osbourne, William Shatner, just to name a few. What astonishes me about this is that even

these famous people who have more than millions can’t even find a cure. So this means that

not even money can save a person with tinnitus…… At this point it’s all up to the scientists and

what they can come up with. As of right now they are experimenting with the regrowth of

sensory hair cells, practicing this on mice and chickens. This approach seems promising for a

cure in the future for both hearing loss and tinnitus, however I refuse to have my hopes up for

it. There are many other treatment trials going on right now, in which the results aren’t fully

gathered yet. It’s all about time and research, that’s all we have. In the mean time us tinnitus

sufferers must find ways to cope and live with this condition, not an easy task at all. We have to

figure out what spikes our Tinnitus, a spike is when the ringing get louder than its usual sound.

Often the spike can be permanent given the circumstance it had occurred. For example if it was

spiked by an acoustic loud sound then it might not go back to baseline, however if it was caused

by caffeine or alcohol then mostly the spike will fade once the substance is out your system. It


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was recently brought to my attention that it is best to have a Tinnitus diary where you write

down each day what you ate or drank, to keep of what spikes it. It’s a good way to know and be

able to prevent spikes from occurring as it makes most struggling days worse. There are many

factors that contributes to spikes and a major one is sleep, without enough sleep tinnitus will

taunt you even more than usual, tinnitus is like a child screaming for your attention…….


I along with other Tinnitus sufferers have researched so much info on meds that we could

probably even become a pharmacist!!! It’s important that we know exactly what kind of

medications spike T and otoxic drugs that are damaging to the ears and hearing. I believe that

taking meds with tinnitus is a sacrifice because we never know how the ringing will react, and if its reversible. This is the very reason why right before any of us taking any harsh meds when we

are sick, we quickly go on the forum and ask others for advice and opinions to be safe. For

example when my wisdom tooth was swollen and hurting so bad I immediately wanted to take

anything for pain relief and I was offered Naproxen 500mg, I had a feeling that this drug was

harmful to tinnitus. My suspicion was right because when I went on the forum and asked if it

was safe to take Naproxen a few members warned me that it causes irreversible spikes, so it is

believed to be otoxic. In fact one member said that Naproxen even warns that tinnitus is a

possible side effect. So what this does to already tinnitus sufferers is it creates an extra sound

on top of the ringing, making it even more unbearable.


So, what’s the point of all this information on Tinnitus and Hyperacusis? AWARENESS!!!!

There’s not much awareness and this needs to change. Please protect yourself you only get one

pair of ears and once the damage is done its irreversible. I don’t want anyone else to suffer the

wrath of tinnitus, it cost me and all the other sufferers out there our quality of life. Take

precaution and keep the volume down on your iPod/electronic devices.


Hope everyone out there lives a long tinnitus free life!! Enjoy the silence…. You’ll never know how precious it is until you lose it.

 

Young life taken away by the DAMNED NOISE AND PAIN!!

FUCK TINNITUS AND HYPERACUSIS!!!!!!!!!! FUCK GOD FOR ALL YOU ARE GOOD FOR!!!!!!

Great memoir @stacey

 

Thank you @gotyoubynuts. I really wish they had a shirt that said F*** T and H, I'd wear it everyday.

 

Design it..

 

Thanks for sharing Stacey, that was interesting to read.

Maybe true in 2005, maybe not so true in 2020. Keep hope my dear

 

I feel your pain. I was just prescripted Anaprox (Naproxen Sodium) for headaches 550mg and I'm scared to take it. I'll suffer before I take it.

 

Remember when doctors tell you 'there is no cure for tinnitus' that there is also no cure for the common cold but people do get better from it.

 

@stacey , I LIKE your memoir.

 

@Kazue I know taking meds with T is one of the most difficult decisions.

 

@dan Thank You very much

 

Hang in there Stacey. This is slowly becoming a more talked about topic in the world today. With more awareness comes more research and funding.

Stay well and focus on good times!

 

@MikeP505 thank you

 

Hey Stacey,

i am working on getting real support group in in NYC. Please message me and will give you my cell. I have @JadeNYC here with me who is interested to get this setup. We have to push towards solution and i will do so until my last breath, i promise. This has to be fixed, this is worst nightmare human being could experience without it being terminal in short run.