Just a Quick Introduction...

Discussion in 'Introduce Yourself' started by moij06, Jun 12, 2015.

tinnitus forum
    1. moij06
      Doubtful

      moij06 Member

      Location:
      England
      Tinnitus Since:
      03/2000
      Cause of Tinnitus:
      virus /menieres
      Hi. I'm new to this forum.
      I was diagnosed with tinnitus in 2000 after having a virus or tonsilitus I was left with a pulsing noise in my left ear, It's a lot like when you listen to a babies heart beat on a monitor when its in the womb. It's continuous the only time it stops or quietens down is when I press my neck on the left.
      I was sent to ENT who told me what I was hearing was my heart rate and not to keep pressing my neck because I was cutting off the blood flow to my brain and I now have Tinnitus and there's no cure and nothing they can do about it apart from sending me to a group where I could sit in a circle and talk about it with others.
      My response was.. 'Ok so you can't fix it and what good is talking going to do when I can't hear anyone over the noise? Plus I'm too busy I have 4 babies at home between 3 months and 5 yrs and one with severe special needs and disabilities, I do not have time to sit in a circle every week.' So he told me to just go home and learn to live with it.
      My life was so busy I just learned to deal with it best I could... until a few years ago I noticed I was getting a lot of pressure in both ears, missing out on words completely during conversations on the phone or in person, getting sharp piercing whistles in both ears and rustling and crackling sometimes with pain, migraines double vision glared vision, tripping steps, catching doorways with my shoulders.. feeling dizzy and like I was drunk, but without the alcohol and needing to sleep for hours after. I ignored them and got on with life. Then I had over a month of nausea so bad I took a pregnancy test (even though I was unlikely I'd be pregnant). The car felt like it was moving when it was parked up, the patterns on walls and floors where giving me the sensation I was on a boat. One day I was sat in the garden with my brother and husband on either side they were talking and i was turning back and forth because I can't hear everything I try to read people lips.. suddenly my vision became distorted like I was looking through a kalidescope and I felt like I was on rollercoaster and was being pulled to the floor by my head.. I gripped the arms of the seat and slid back to stay in my chair.. I couldn't hear anything for the first time in over 10 years even the pulsing had disapeared. Then it stopped and I went to A+E , I couldn't hear very well everything was muffled, they sat me on a chair and lay me back lifted me up , I almost vomitted and was diagnosed with severe vertigo and tinnitus in both ears and a suggestion I had Menieres desease. Which the gp an ent and neurologist all confimed.
      Again 'no cure.. I'm afriad you have to go home and learn to live with it.'

      My world has become so very small now.. I used to be very sociable, but I rarely leave the house or have people visit, when I do go out I'm with family and enjoy nights out because I fit in well.. everyones drunk (except me but I look it sometimes lol) and no one can make out what anyone else is saying because of the music! ;)
      I try to find out any infomation I can online about tinnitus and menieres desease hoping I'll maybe come across something helpful, because the doctors and consultants have done nothing but give me pills for the sickness and betahystine hydrachloride pills for Menieres but they do nothing for it.

      Hope the intro wasn't too long :D, I look forward to getting to read your stories and know you all. :thankyousign:
       
      • Hug Hug x 2
    2. patwalsh
      Confused

      patwalsh Member

      Location:
      England , Isle of Wight
      Tinnitus Since:
      March 2015
      Hi. Check this youtube video out, it's a interview with the singer Ryan Adams.
      It sounds like he had similar problems to you. Have you tried to get a second opinion from another ENT doctor?
      Ryan Adams: Interview

      Regards Pat
       
    3. SoulStation
      No Mood

      SoulStation Member Ambassador Team Tech

      Location:
      New York
      Tinnitus Since:
      2012
      Cause of Tinnitus:
      Noise / Possible Medication
      Cool video - I notice he said he's trained himself to focus on how his fingers feel. You can see he starts kind of a repetitive finger motion at some point in the interview- it definitely seems like a distraction technique to me.
       
    4. patwalsh
      Confused

      patwalsh Member

      Location:
      England , Isle of Wight
      Tinnitus Since:
      March 2015
      Yea I would love to have a proper talk to with him to find in more detail how he copes
       
    5. moij06
      Doubtful

      moij06 Member

      Location:
      England
      Tinnitus Since:
      03/2000
      Cause of Tinnitus:
      virus /menieres
      Hi thanks I will have listen to that tomorrow.. I'm having couple of really bad days right now.. I have just changed gp so I think I will ask them to refer me to another ent and see where it gets me.
       
      • Like Like x 1
    6. patwalsh
      Confused

      patwalsh Member

      Location:
      England , Isle of Wight
      Tinnitus Since:
      March 2015
      Hang in there, it will get better.
       
      • Funny Funny x 1
    7. Karen
      Talkative

      Karen Manager Staff Benefactor Hall of Fame Ambassador

      Location:
      U.S.
      Tinnitus Since:
      05/2010
      Cause of Tinnitus:
      First time: Noise 2nd Time: Ototoxic drug
      Hi, @moij06,

      It sounds like you have (or had?) pulsatile tinnitus, from your description of symptoms. Pulsatile tinnitus is vascular in nature, and can be cured in some cases, IF the cause is found. I know, because I also have pulsatile tinnitus. Mine started five years ago, after taking a blood pressure drug for the first time. It just started suddenly, and I first noticed it one night when I was trying to go to sleep. Back then, my pulsating sounded more like a drumbeat than a heartbeat, it was so intense. Now, five years later, I still have it, but it has calmed down a lot. I had dizziness and occasional vertigo, too, but the dizziness/vertigo is gone now. It seemed to have something to do with the Eustachian tubes, and/or the body and brain adjusting to the pulsating and increased ringing.

      I agree that you should try to find a doctor who can help you, perhaps a neurologist or other specialist who understands what pulsatile tinnitus is. The doctor might order tests for you, including an MRI and MRA/MRV of the arteries and veins. This might help to diagnose your condition, and determine whether there is any further treatment that could help you.

      Have you checked the website Whooshers.com? There is a lot of information on that website about pulsatile tinnitus, what questions to ask your doctor, etc., as well as stories of cured whooshers. It's worth checking out, if you haven't already done so.

      I wish you well, and hope you can find a doctor who understands your condition, and can help you find some answers.

      Best wishes,
      Karen
       
    8. moij06
      Doubtful

      moij06 Member

      Location:
      England
      Tinnitus Since:
      03/2000
      Cause of Tinnitus:
      virus /menieres
      Hi yes I do still have the pulsitile tinnitus , ive had it over 15 years now, it never stops and is quite loud and does get much louder often. I also have many other sounds now too for the past few years in both ears that come and go daily and I can't stand some every day sounds I seem to home in on things like tapping ,breathing, munching and slurping smacking noises when people are eating near by and it drives me to insanity. I'll check out whooshers.com Thank you.

      I have already had mri's and neuro said it was just on just my left ear and neck on that side apparently.. they just said menieres and nothing they can do. Ive been reading about others online with tinnitus and menieres and see everyone else is being treated in some way so I will be seeing the new gp for help.
       
    9. Karen
      Talkative

      Karen Manager Staff Benefactor Hall of Fame Ambassador

      Location:
      U.S.
      Tinnitus Since:
      05/2010
      Cause of Tinnitus:
      First time: Noise 2nd Time: Ototoxic drug
      I know what you mean about certain sounds driving you crazy. In our neighborhood, so many people use leaf blowers, and that sound can definitely make my pulsating and my tinnitus react to it. The sound on a television set does that to me, too, but it has gotten better with time.

      At any rate, yours sounds quite severe, and I hope you find a doctor who can help you. You could try sending your MRI scans to another doctor, to see if you can get a second opinion of your condition.

      Good luck, and please keep us posted on how you're doing!!!
       
    10. moij06
      Doubtful

      moij06 Member

      Location:
      England
      Tinnitus Since:
      03/2000
      Cause of Tinnitus:
      virus /menieres
      Thank you and I will ;)
       
      • Like Like x 1

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