What Treatment Options Do I Have 6 Weeks Out?

Discussion in 'Support' started by jdjd09, Jan 29, 2016.

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    1. jdjd09

      jdjd09 Member

      So, I had hearing loss and loud tinnitus end of December. Then I entered the AM-101 trials, after seeing a doctor and having him tell me nothing could be done.

      Well, now I come to find out I was suppose to be treated with prednisone, which could have gotten my hearing somewhat back and also gotten rid of tinnitus possibly too. My tinnitus is noise induced with hearing loss.

      Well, I finished my shots this week (could be placebo for all I know). I'm so pissed off that no doctor attempted to give me this option. Not the doctor I first saw or the ENT who I talked to about this trial.

      I'm about 6 weeks from the onset of this. What do I do at this point? I'm losing my mind. If I take prednisone now, I am gauranteed nothing and will get kicked out of trials.

      If I stay in trials I can't get on anxiety meds. I am freaking the hell out though.

      I'm so furious no one attempted to help or guide me in the right direction. My life is now ruined because people wouldn't help me.

      I can't reverse my hearing loss and can't enjoy music now because of the offset. I can't stand this ringing. I can't stand life anymore.

      Seriously, my life was great until this. I don't know what to do. What treatment options do I have at this point? What should I do at this point? I'm lost, please don't give me nice words. Give me guidance. What am I suppose to be doing right now to best help me in this situation.

    2. glynis-harbron

      glynis-harbron Member Benefactor Hall of Fame Ambassador Team Awareness Team Research

      England, Stoke-on-Trent
      Tinnitus Since:
      Cause of Tinnitus:
      Meniere's Disease
      A trial is good to help specialists find out if some treatments help but they don't guarantee your not getting a placebo or not.

      To do a trial you need to be in a strong mindset as it can cause anxiety etc.
      When the trial is over your not guaranteed the treatment to continue as its just a trial that medication needs to be passed before it gets to public use .

      Prednisone steroids don't get offered as tinnitus treatment as its for respiratory problems as is a anti inflammatory medication but some doctors from some countries do prescribe it for early onset tinnitus.

      It has to be your decission on continuing the trial and have to feel confident in taking part in it and if you are suffering emotionally that might be time to quit....lots of love glynis
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    3. liquefact

      liquefact Member Benefactor

      Seattle, WA
      Tinnitus Since:
      Cause of Tinnitus:
      Loud Indoor Rock Concert
      It's too early still and if you've had your AM101 injections in 6 weeks (which is awesome), you're guaranteed that you'll have the real drug around 4 months, which'll probably give you a significant permanent relief.

      You'll get much better even if you're given placebo in the first round. First months are the hardest because you fight with anxiety, depression which is perfectly normal. This alien sound freaks your brains out right now. It'll in time get used to it and start filtering it out, slowly but surely.

      Trust me. You'll get better.
    4. Nucleo

      Nucleo Member Benefactor

      Tinnitus Since:
    5. AlexSongitus

      AlexSongitus Member Benefactor

      Tinnitus Since:
      Cause of Tinnitus:
      Noise induced
      I am on Prednisone right now and also scheduling the AM-101 trials. Day 3 on Prednisone.

      They told me I only need to be off of Prednisone for 2 weeks, and it can take 2 weeks to be screened. At first she said I was supposed to be off of it for 2 weeks before my screening, but then someone told her that you can in fact still be taking Prednisone right up to the beginning of the screening and use the 2 weeks screening period to flush it out. My Prednisone treatment is prescribed for 9 days. So you should have had time to take it and use the 2 weeks screening period to have it flushed out, so I don't know why they didn't tell you that. But then again, Prednisone is kind of a hit and miss so far for me, so I think the sooner you started the AM-101 the better.

      First day Prednisone relieved mine completely down to total silence by evening. Second day woke up with it loud and got it down to about a 3 at best by evening. A disappointing setback. Today I woke up with it moderate and will see how it goes.

      I'm not feeling like Prednisone is really going to help get rid of it entirely so I wouldn't stress out over you missing out on that at this point. I'm also feeling some adverse side effects like very dry mouth, bloating, confusion, the corner of my right upper lip is experiencing twitching like temporary paralysis about 6-7 times an hour. I think it's good you started the trials and I wouldn't put that at risk by taking Prednisone at this point. Last night I was a bit worried about the side effects and if they get much worse I said I would stop taking it since it hasn't been as effective as the first day.

      Just try some masking and sound therapy videos to keep you sane when it spikes while waiting for the drug to kick in. I'm crossing my fingers for you! Post back and let us know how it goes.
    6. jdjd09

      jdjd09 Member

      Seriously, is there any chance prednisone can HELP WITH THE HEARING LOSS at this point? I get it may or may not help with the tinnitus.

      I have hearing loss as well. This is a known.
    7. jdjd09

      jdjd09 Member

      Like I'm seriously losing my mind. I wake up in anger and frusteration over not being treated properly by doctors. This has permanently changed my life.

      I now have less hearing in one ear than the other because of this. It may not have been even related to the headphones, just coincidence. This may have been SSHL.

      What options do I have at this point? Please someone help me, I'm desperate. I will drop out of the AM-101 trials if I legit have some chance of getting my hearing back/relief. It's not just the tinnitus, its the hearing loss.

      I'm getting threats from relatives they will ward me. I need help. Please someone, anyone. Please give me some advice.
    8. jdjd09

      jdjd09 Member

      Sorry, but could someone, anyone suggest something? I'm super desperate for any help.
    9. Atlantis

      Atlantis Member

      Tinnitus Since:
      That's why all of us are here. There is nothing to suggest. Your tinnitus won't lessen in intensity. You have to learn to accept it as part of your life. That is the difficult part. You can talk to a psychiatrist or psychologist if that would help.
    10. jdjd09

      jdjd09 Member

      I'm mainly seeking out treatment for the hearing loss though. Is there any chance of getting that fixed somehow at this point?
    11. Unlikely, though you haven't provided much information about the hearing loss so it is hard to tell. If it was some sort of trauma, 6 weeks out is pretty far. It's worth keeping in mind that the evidence isn't clear that steroids help with acoustic trauma.
    12. Lorac

      Lorac Member Benefactor

      Tinnitus Since:
      Cause of Tinnitus:
      Sudden profound hearing loss in left ear.
      @jdjd09 ,
      I had a similar experience with misdiagnosis in the beginning. My doctor discouraged me from seeing ENT for a month. When I finally made it to the ENT, I was told that I probably got there too late. They tried prednisone to restore the hearing in my left ear but it did nothing. An MRI is another routine test with sshl to eliminate the possibility of a tumor in the ear. I did not have a tumor.

      I am deaf in that ear now and the ENT told me to learn to live with the tinnitus. I was so pissed off! It felt like there was some crazy conspiracy between the doctors to make sure that my life got really screwed up! I eventually went to an ENT at the Cleveland Clinic but he had nothing new to offer.

      I cannot really advise you as to whether or not you should try steroids at this point. It did not work for me after 4 weeks but there is no guarantee that prednisone will work even if administered quickly. I lost too much hearing to benefit from a hearing aid but that might be an option for you. Some people experience a reduction in tinnitus after receiving hearing aids.

      I sought help from a psychologist after several months of deafness and tinnitus and depression and anger, etc. That was the only doctor who actually helped me. I never received any meds for anxiety but I think that could have helped during those first months. I can't really give you medical advice since I am not a doctor. I can only relate my own experiences and offer support. I can tell you that sshl and tinnitus have changed my life but I am adjusting to my new normal. I am okay in spite of the carp life has handed me these past couple of years.
    13. jdjd09

      jdjd09 Member

      Anyone else? Could I take steriods about 6 weeks out from onset of SSHL? Is there any studies that show it might benefit me?

      Please anyone, I just want all my options at this point. Also, is there a chance hearing will come back over time?
    14. The spontaneous recovery rate for SSHL is high - something like 1/2 to 2/3. Six weeks is almost certainly too late for steroids to make a difference. There is information about SSHL at http://www.dizziness-and-balance.com/disorders/hearing/shl.htm Note that they say "Bottom line: At this writing (2015) almost everything looks like a placebo. Because hearing tends to recover spontaneously at such a high rate, treatment is not always felt necessary, especially when impairment is minor."

      In the end, the person to ask about your specific case is is your ENT.
    15. Lorac

      Lorac Member Benefactor

      Tinnitus Since:
      Cause of Tinnitus:
      Sudden profound hearing loss in left ear.
      @jdjd09 ,
      I completely understand how angry you feel about the lack of good advice you have received from doctors thus far but I agree with Aaron, your own ENT will have to address your specific case. Have you been to an ENT? Have you been to an audiologist?

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