Tinnitus Memoir

Discussion in 'General Chat' started by stacey, Oct 19, 2016.

tinnitus forum
    1. stacey
      Bookworm

      stacey Member

      Location:
      New York, NY
      Tinnitus Since:
      07/15/2014
      Cause of Tinnitus:
      Unknown
      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.”

      1

      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.



      2


      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


      3


      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.
       
      • Hug Hug x 3
      • Like Like x 1
      • Agree Agree x 1
    2. gotyoubynuts

      gotyoubynuts Member

      Tinnitus Since:
      10/1990
      Cause of Tinnitus:
      Concert
      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
       
      • Genius Genius x 1
    3. stacey
      Bookworm

      stacey Member

      Location:
      New York, NY
      Tinnitus Since:
      07/15/2014
      Cause of Tinnitus:
      Unknown
      Thank you @gotyoubynuts. I really wish they had a shirt that said F*** T and H, I'd wear it everyday.
       
    4. Mahr
      Tired

      Mahr Member Benefactor

      Location:
      The Netherlands
      Tinnitus Since:
      2011
      Cause of Tinnitus:
      unknown, probably hair cell damage
      Design it..
       
      • Funny Funny x 1
    5. Julien87
      Balanced

      Julien87 Member

      Location:
      France
      Tinnitus Since:
      2006
      Cause of Tinnitus:
      Exposure to loud sound (concert)
      Thanks for sharing Stacey, that was interesting to read.

      Maybe true in 2005, maybe not so true in 2020. Keep hope my dear ;)
       
      • Friendly Friendly x 1
    6. Kazue

      Kazue Member

      Location:
      USA
      Tinnitus Since:
      09/19/2016
      Cause of Tinnitus:
      Unknown
      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.
       
      • Agree Agree x 1
    7. volsung37

      volsung37 Member Benefactor

      Tinnitus Since:
      2014
      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.
       
      • Agree Agree x 1
      • Helpful Helpful x 1
    8. dan
      Chatty

      dan Member

      Tinnitus Since:
      06/2011
    9. stacey
      Bookworm

      stacey Member

      Location:
      New York, NY
      Tinnitus Since:
      07/15/2014
      Cause of Tinnitus:
      Unknown
      @Kazue I know taking meds with T is one of the most difficult decisions.
       
    10. stacey
      Bookworm

      stacey Member

      Location:
      New York, NY
      Tinnitus Since:
      07/15/2014
      Cause of Tinnitus:
      Unknown
      @dan Thank You very much :)
       
    11. MikeP505
      Curious

      MikeP505 Member Benefactor

      Location:
      Ontario Canada
      Tinnitus Since:
      2011
      Cause of Tinnitus:
      Punishment for being so darn good looking!
      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!
       
      • Like Like x 1
    12. stacey
      Bookworm

      stacey Member

      Location:
      New York, NY
      Tinnitus Since:
      07/15/2014
      Cause of Tinnitus:
      Unknown
      • Hug Hug x 1
    13. lolkas

      lolkas Member

      Tinnitus Since:
      06/06/2016 ?
      Cause of Tinnitus:
      Don`t know
      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.
       
      • Agree Agree x 2
    14. Penate

      Penate Member

      Tinnitus Since:
      07/04/2015
      People from health care department and government please come to this forums and see how many and how much we suffering, this is ridiculous 2016 and is NOTHING for this horrendous condition,they said tinnitus and hyperacusiss don't kill you, yeah don't kill you in the moment is worse kill you little by little is the worst torture in the world.
       
      • Agree Agree x 1
    15. gotyoubynuts

      gotyoubynuts Member

      Tinnitus Since:
      10/1990
      Cause of Tinnitus:
      Concert
      i'm sure you will whine here like a little boy for years to come!

      why don't you approach your senator and ask them to do something about it!!
       
    16. Penate

      Penate Member

      Tinnitus Since:
      07/04/2015
      You have no idea what tinnitus and hyperacusiss are I don't know what you doing in this forums, you don't know what I'm going through, the most severe tinnitus and hyperacusiss, wife 2 kids, sick mother and keep working in noisy shop for support my family so please shut up.
       
      • Agree Agree x 2
      • Hug Hug x 2

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