Tinnitus Sucks

Discussion in 'Introduce Yourself' started by Cheryl K, Mar 3, 2016.

tinnitus forum
    1. Cheryl K

      Cheryl K Member

      Tinnitus Since:
      Cause of Tinnitus:
      Unknown. They tell me hearing loss
      Tinnitus started with a cold then "supposedly" fluid behind the ear drum". Had vertigo 10/5/15 and dr's told me to take Bonnie. Had it for three weeks then in 12/5/15 had vertigo again. Went away after 3 weeks and experienced dizziness for a couple of weeks. On January 4, 2016 buzzing in my ears began and was sent to ENT had a hearing test. "Slight hearing loss" but "nothing we can do." Dr's suck. Sorry. Was left to my own devices. I went to crainio sacro therapist, am now doing PT with some relief but no real answers. Broke my collar bone 17 years ago. I am a Psycho therapist and a CBT therapist so this is throwing me for a loop. Working hard on mindfulness and meditation which I have always incorporated in my practice. I am encouraged by the courageous and honest posts that I read and help me a great deal to work through this. This is the first time in my life that I have signed up for any blog. Thank you all. I am so grateful for the support of this group. Maybe a cure is around the corner with 23 million of our voices SCREAMING OUT for the medical community to solve this puzzle
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    2. billie48

      billie48 Member Benefactor Hall of Fame Ambassador Team Research

      Vancouver, Canada
      Tinnitus Since:
      Welcome Cheryl. Your condition of T and vertigo after a cold may mean ETD. Have you got the ent checked this and ruled out ETD? Your background is interesting. We do have health pro such as doctors who have T also and have posted their conditions here. Dr. Hubbard said he used CBT to help himself. Here are two posts from these doctors (and they are on the Doctor's Corner').


    3. Lorritay

      Lorritay Member

      Tinnitus Since:
    4. Danny Boy

      Danny Boy Member Benefactor Hall of Fame

      Tinnitus Since:
      Cause of Tinnitus:
      Ear infection
      It does truly suck! I had an ear infection with fluid behind the ear and developed tinnitus because of it. I didn't have hearing loss loss, so maybe hidden hearing loss.

      I am sure there will be a treatment one day, as trobalt a KV7 potassium channel worked for me. Most people use GABA drugs, Xanax and clonazepam, have given people relief.

      I'm happy you like this forum and all of us will help and support you ^_^.

      I wish you the best of luck and hope you can get through this.
    5. Cheryl K

      Cheryl K Member

      Tinnitus Since:
      Cause of Tinnitus:
      Unknown. They tell me hearing loss
      Thank you for the links Billie. What is ETD?
    6. Cheryl K

      Cheryl K Member

      Tinnitus Since:
      Cause of Tinnitus:
      Unknown. They tell me hearing loss
      Looked up ETD. Thx
    7. attheedgeofscience

      attheedgeofscience Member Hall of Fame

      Tinnitus Since:
      Cause of Tinnitus:
      Head Injury
      The following awareness post relating to breast cancer was recently shared on Facebook:


      [Note: the pink "circle" was there to begin with; I added just the red one]

      As you can see, the post was shared by a private individual, and yet it managed to get a very impressive 25,000 ratings and +100,000 shares...

      I doubt if you, or indeed we, here on TinnitusTalk, shared an awareness message relating to tinnitus that it would get more than 200 ratings and perhaps 100 shares. For instance, we shared a message by a celebrity not long ago (Mark Ronson) - and still it only got around 350 ratings all-in-all (ratings/shares combined) - which incidentally is the highest ever by a non-sponsored campaign:

      The closest myself, and the rest of @Team Trobalt ever came to reaching an awareness level similar to the breast-cancer campaign, was when we tried to get a research paper (authored by Prof. Moore) relating to Trobalt shared on the Wounded Warrior Project's news feed (+3 million followers and an authenticated profile):


      The reason for contacting the WWP was the overlapping interest between us and them in terms of tinnitus (tinnitus is the #1 reason for disability for veterans of the armed forces). Contacting the WWP proved a challenge (you can't just walk in the "front door" with such an organization; you need contacts). So... I actually ended up liaising with a person who happens to be a friend of former president George Bush. The person can in fact be seen presenting at the inauguration of his library:

      The George W. Bush Presidential Center...

      Despite such connections, we actually did not succeed. A last attempt involved contacting the CEO of the organization directly - which happens to be the hardest e-mail address we have ever had to crack (much harder than that of the e-mails of CEOs of the pharma companies).

      So what is the underlying message so far? Well, if you cannot get those people who you would think would have an overlapping interest in assisting you with your cause, then what?

      Perhaps these two members have the right "recipe" for tinnitus awareness:
      Indeed, there is no doubt that "generation deaf" is a reality to come, and, as an advocate, I did contact the EU's office for health related matters to make them aware of certain low-hanging fruit initiatives they could implement (who would have expected anything less, right?):
      1½ years later, I doubt you will find earplugs handed out at concerts at the European level.

      So... the bottom line is: if you cannot enlist the help of organizations, authorities, and those who suffer from tinnitus, I think it is fair to say you will have some degree of difficulty finding 23 million screaming voices of tinnitus. I wish you good luck, at least.

      As for myself, this past Friday, I had a one hour Skype session with my primary research contact. The call was a concluding session regarding the early stage planning for a major research initiative at the EU level which will cement tinnitus research at the highest levels. More on that after the Nottingham conference later this month:


      Anyway, now you - and others - have a little idea of what advocacy is all about, and, what it takes to make a difference. Looks easy enough on the paper, but, a little harder to carry out in real life...
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