Major Rumbling... Most Invasive... I Need Your Help.

Discussion in 'Support' started by Luisa, Nov 14, 2014.

tinnitus forum
    1. Luisa

      Luisa Member

      Location:
      New York
      Tinnitus Since:
      1990
      Hi all,
      Ive written before, but still need to share whats going on, as I HAVE to find out if there are others experiencing some of this...Ive spent weeks with a Neuro-surgeon and had Cerebral Angiogram....as they felt I had an Arterio-venous Fistula in my head making this noise that could explode at any time...
      Guys....MY NOISE. is not Tinnitus. I have an engine roaring so loud that now I am forced to cancel all vacation plans and normal holidays and life, to sit in a room that must NEVER be quiet with a white noise machine on 24/7. I can track how in the past 3 months, the noise has just grown and grown and grown. Every week, is much more invasive.....now facing horrendous testing furthur into brain and MRA's with contrast of neck and brain...Ive had an angiogram...

      This is not Tinnitus..that I have in my other ear. or is it?? I am hearing and FEELING the vibrations from this intense machine running non stop producing noise...There is no being in any quiet room without utter agitation...That being said...Im trying to plan a vacation!! WHY?? because it makes me feel more normal. I have a feeling they will see something with this next series of MRA and MRI with contrast. I just dread it. Scared of the contrast...
      I realize this letter is a bit disjointed. Im just sort of throwing it out there, Im utterly flabbergasted that any brain could produce this level of progressive motor engine rumbling and survive without some major event happening. The steady growth and progression of loudness is what worries my neuro surgeon the most.
      Does anyone have any noise similiar?? I do know what the typical T is like. Ive had that for years. This is the other side, not at all high pitched...very low and loud rumbling like a big machine in the next room...Im going to respond to every one who writes...Please would appreciate feedback
       
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    2. 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, Luisa,

      I'm so sorry you're experiencing such a debilitating type of tinnitus, and/or rumbling. Hugs to you for enduring it as well as you have been!! Mine isn't quite like yours, but I do know what it's like to experience that feeling of vibration in your head. I have pulsatile tinnitus, and in the beginning, mine felt like my whole head was vibrating, especially when lying down. It has gotten somewhat better with time, or maybe I've gotten somewhat more used to it. I think planning a vacation is a good idea, and may help to distract you, as long as the doctors feel you can travel without any problems.

      I've had an MRI and MRA with contrast (open MRI), and didn't have any problems afterward. Just be sure to drink lots of water both before, and especially after, the procedure. For me, and open MRI/MRA was really preferable, since I'm somewhat claustrophobic.

      I can certainly understand why you'd experience the noise and vibrations and rumbling if you really do have a fistula. I hope that the tests will help to finalize the doctor's opinion, and give you some answers.

      I wish you success with your doctors in getting some answers, so you can get some relief soon!

      Very best wishes and hugs,
      Karen
       
    3. Luisa

      Luisa Member

      Location:
      New York
      Tinnitus Since:
      1990
      How nice of you Karen to send such a nice letter. I seem to be quite experienced in all kinds of Tinnitus as I understand your pulsatile Tinnitus. Glad to hear its not as troublesome for you as it can be. Im going to look for the open MRI. Ive had so many in the past year, it would be nice to be spared some of the intensity of it.
      I went thru the Angiogram with all its radiation exposure, was to have an embolization in my brain, and halfway thru the told me they were wrong. dont have a fistula....now..they are confused and want to do spinal taps...This condition, with so much lack of rest, has taken a good life and made mincemeat out of it.
      Thank you for your good wishes...back at you lady....Luisa
       
    4. geronomo

      geronomo Member

      Tinnitus Since:
      1998
      I think its simply tinnitus. I know my own changed over the years from very high pitched to a loud rumbling noise, then back toa high pitch. After many sleepless nights depression, the whole bit, my doctor prescribed a cocktail of gabapentin 600mg and clonopazm.5 mg, twice a day and for me anyway it greatly reduced the noise. On the bright side I did habituate and it has become a non issue. Keep strong, have faith, the same will happen to you..
       
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    5. Kopesy
      Balanced

      Kopesy Member Benefactor

      Location:
      England, United Kingdom
      Tinnitus Since:
      19/09/2013
      Cause of Tinnitus:
      Acoustic Trauma'?' (Unknown)
      Hello there Luisa

      First of all has the noise decreased at all yet? Hope it has. When I first deve;oped Tinnitus it was the common high pitched noise you'd associate with it, though about a week later that all changed, basically the same thing as you, I felt like there was some sort of jet engine going on in my head or what I could best describe as a washine machine on a spin cycle repeating over & over & over... my panic was huge! I kept thinking brain tumor! I drove to hospital straight away but they could do nothing for me, I felt like I was going insane with constant panic attacks. After a few weeks however it gradually decreased with spikes here & there but went eventually, back to the tv static T & high pitched noise I currently have now. MRI results indicated no tumors or anything life threating. Suffice to say if everything goes well I would more than likely put it down to stress, I was massively stressed at the time I got my T & it seems that might have triggered what I thought was the end of my sanity!

      Hope all is well & keep strong o/
       
    6. mamag

      mamag Member

      Tinnitus Since:
      January 2014
      Hi - I hope you are feeling better. I just wanted to share that I get a low rumbling, too. Typically it's either a high pitch or the TV static sound. But every once in a while I get that low rumbling/hum. I don't know if it's the same as yours, but it completely freaks me out when it strikes. It's almost like a vibration. Anyway - my T is supposedly due to eutsachian tube issues and chronic congestion. So while I'm told its fluid, it bugs the hell out of me and gets my fear anxiety in full force.

      Anyway - I am sure I was of no help, but just wanted to let you know I hear those low sounds, too. Stay strong!
       
    7. dan
      Chatty

      dan Member

      Tinnitus Since:
      06/2011
      I think it comes down to the pitch and loudness.
      Very loud high pitch tinnitus feels like a jet engine piercing in the ears.
      Very loud low pitch tinnitus will feel like a rumbling vibration in the head.
       
      • Agree Agree x 3
    8. DebInAustralia

      DebInAustralia Member Benefactor Team Research

      Location:
      Geelong, Victoria
      Tinnitus Since:
      30/12/13
      in quiet places, i hear a very faint hum, like a car idling from a distance......

      i used to think it was a car actually as i live near a busy highway, but i realise now that it is a car inside my head.

      ive had many a sleepless night because of this noise, but now decided since i cant change it, ill ignore it. now it doesn't bother me.
       
    9. valeri

      valeri Member Benefactor Team Awareness

      Location:
      Australia
      Tinnitus Since:
      09/2011
      Both a living hell in it's own special way:(
       
      • Agree Agree x 2
    10. dan
      Chatty

      dan Member

      Tinnitus Since:
      06/2011
      Well said Valeri (y)
       
    11. JohnnyMx
      Sunshine

      JohnnyMx Member

      Tinnitus Since:
      Apr/2013
      Hi mamag, my T seems to be caused by the same problem, chronic sinus, chronic congestion, both ears and nose... how are you now, have you made some improvement over time?

      Best wishes for you.
       
    12. SHEILA46

      SHEILA46 Member

      Tinnitus Since:
      06/2015
       

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