Tinnitus and Pulsatile Tinnitus

Discussion in 'Introduce Yourself' started by GiGi67, Sep 28, 2016.

tinnitus forum
    1. GiGi67
      Gloomy

      GiGi67 Member

      Tinnitus Since:
      2014
      Cause of Tinnitus:
      Endolymphatic Hydrops, also have pulsatile tinnitus L ear
      Hello, new here and wanted to introduce myself!

      I'm 49, married, kids, grandkids, live in New Orleans, and I'm a retired RN (due to work-related hip injury). I've had tinnitus in my left ear for a few years now, super low volume humming sound with the occasional "black out" of hearing followed by a few clicks and then it will "open up" again. Recently it started intermittently in my right and has gotten worse on the left. I don't remember exactly when I started with the pulsatile tinnitus in my left ear, perhaps in 2014?, but it was intermittent and usually only happened when I was going to bed and had my head turned a certain way.

      Fast forward to 2015, it's a long story, but I was diagnosed with deep vein thrombosis (blood clot in the leg) and bilateral multiple pulmonary embolisms (blood clots in the lungs). In short, I damn near died. I was in heart failure, short of breath with any exertion, and just a mess. I was started on the blood thinner Eliquis which did its job nicely and I'm a little over a year out now and remain clot-free, heart has returned to baseline thankfully, breathing is a bit easier, but I'm having issues with post-thrombotic syndrome in my legs. I noticed not long after the clot diagnosis that the pulsing in my left ear was constant, and was getting louder. Since then it's been non-stop and is so loud sometimes that it interferes with conversation and I no longer hear the ringing, just have the occasional "black out" and then the clicking very faintly.

      I sought care recently due to ear, jaw and eye pain on the left, had some imaging done, and I was diagnosed with a non-cancerous... something... in my head, near the left petrous apex. I've seen a neurosurgeon and a neurotologist, neither can clarify exactly what it is and the plan for now is to re-image me in 6 months to see if anything's changed. I have had a CT-A of my head, carotid doppler study, MRI w/ and w/o contrast and MRA of head and inner ear, CT of inner ear, CT and CT-A of my abdomen and pelvis (looking for clots), heart echo, vestibular testing, hearing testing. In addition to "The Marble" as I refer to it now, they diagnosed me with endolymphatic hydrops on the left but it's not know if it's Meniere's or secondary to The Marble. I also have hearing loss in the left ear and was told that I have a thin mastoid bone or something of that nature which may be why I hear the pulse... but if that's the case, why haven't I always heard it? Why now? I think something's up that they're missing. More questions to ask at the next visit with the neurotologist.

      SO... that's my story so far. I'd heard about Whooshers but for the life of me cannot figure out that website. Is there a forum? I found the Facebook group and asked to join but the request just sat there for days and days, so... I dunno. Meanwhile, this pulsing is making me freakin' nuts and some days it's so loud I can barely stand it.

      Anyway, hello! :)
       
      • Hug Hug x 1
    2. glynis-harbron
      Feminine

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

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      A warm welcome to Tinnitus Talk.
      Wooshers.com is another forum for Pulsitile tinnitus.
      We have a pulsitile tinnitus forum in here also and @Karen has great advice for you...lots of love glynis
       
      • Like Like x 2
    3. 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, @GiGi67, and welcome!

      I'm so sorry to hear of your blood clotting issues, and your tinnitus and pulsatile tinnitus. I have constant pulsatile tinnitus, too, so I certainly can sympathize with what you're hearing. It sounds like you've had all the appropriate tests, with the exception of an angiogram, so that's good. However, it looks like the information you've gotten so far may not totally explain your symptoms. I am glad you have another appointment with the neurotologist, and it will be interesting to see if he has any new information or answers for you.

      It is true that a common cause of pulsatile tinnitus is thinning of the bone, but to me, it seems like yours may have another cause. It's hard to believe that you didn't have this symptom before, if you had thinning of the bone. In my opinion, although I'm no doctor, it seems like your pulsatile tinnitus has more to do with changes in your vascular system caused by the blood clots. I don't know why those changes would result in constant pulsatile tinnitus, but maybe your doctor can provide some answers for you. If he cannot, perhaps you could consider contacting the new clinic that has recently opened in San Francisco, that specializes in pulsatile tinnitus. I don't recall the name of the clinic, but you can Google "pulsatile tinnitus clinic in San Francisco", and find out more about it.

      To answer your question about Whooshers.com: No, there is no forum on their website. The only forum is the one on Facebook, that has not yet responded to your request for membership. So, in the meantime, we are very glad to welcome you here at Tinnitus Talk. We can at least provide moral support, and I'm sure there are other pulsatile tinnitus sufferers here who can offer additional suggestions.

      I hope you'll update us after you see the neurotologist, about what his thoughts are.

      Again, we're glad you've joined us, and are happy to offer you support and understanding!

      Best wishes,
      Karen
       
      • Like Like x 1
    4. GiGi67
      Gloomy

      GiGi67 Member

      Tinnitus Since:
      2014
      Cause of Tinnitus:
      Endolymphatic Hydrops, also have pulsatile tinnitus L ear
      Thanks @Karen for the welcome! I'm happy to be here either way as I do have regular ol' tinnitus too and it's not fun and games either. I'm sure I'll be digging around and reading lots of stuff to educate myself, as I've mostly tried to ignore it until the last year or so. I do agree that if the pulsatile tinnitus was due to the thin mastoid bone that I'd have heard it before now, and I think it's due to a change in my vascular system too... which is extremely bothersome to me.

      If the doc office doesn't go as planned re: answers then I'll definitely check out the clinic in SF. Thanks for that heads up!
       
      • Like Like x 1
    5. MikeP505
      Curious

      MikeP505 Member Benefactor

      Location:
      Ontario Canada
      Tinnitus Since:
      2011
      Cause of Tinnitus:
      Punishment for being so darn good looking!
      @GiGi67

      Goodness girl you have been thru the gauntlet. Glad to know you are no longer at risk of pulmonary failure at least but the other issues are just as hard to deal with I'm sure.

      Here at Tinnitus Talk, we all have many of the same issues and also many different ones. Always a learning curve in life. I can only really understand what your tinnitus is doing to you and also the times you actually hear nothing for awhile. I am completely deaf other than residual hearing in my right ear and suffer the loudest damn tinnitus you can imagine. I never really took hearing health seriously. I played in many bands over the years and performed at many local clubs and events. I knew I was risking injury to my hearing but figured it would come slow and I could make lifestyle changes when issues start to pop up.

      Unfortunately I had a serious kidney issue and needed emergency surgery. That was in 2011. After just 2 days recovering from the surgery I woke up almost deaf and tinnitus raging loud. So a combination of loud environments AND possibly a nasty side effect of a renal drug administered to me. A drug known as a "slow push drug" that needs to be fed into the system very slowly. Chances are I was injected too quickly and poof, here I am! None the less, we welcome you openly here at Tinnitus Talk and others may have better answers for you. People on here have helped me so much since I joined. Simply amazing people who suffer like the rest of us.

      I wish you only the very best in healing from all your other issues and hopefully your tinnitus will at the very least lessen a bit so it becomes less bothersome. Most of us just have to live with it and actually get better dealing with all these issues as time goes on. Get well GiGi and stay strong!

      Hugs from Canada.
       
      • Like Like x 1
    6. MikeP505
      Curious

      MikeP505 Member Benefactor

      Location:
      Ontario Canada
      Tinnitus Since:
      2011
      Cause of Tinnitus:
      Punishment for being so darn good looking!
      @GiGi67

      Just wondering how you are holding up?? Keep us posted.

      Mike
       
      • Like Like x 1
    7. GiGi67
      Gloomy

      GiGi67 Member

      Tinnitus Since:
      2014
      Cause of Tinnitus:
      Endolymphatic Hydrops, also have pulsatile tinnitus L ear
      @MikeP505

      I'm hanging in there! I saw the neurotologist and... just ugh. Nothing really. He did clarify my brain "thing" as a "petrous apex effusion" and the plan is to reimage in April to see if it's grown. I did ask why the constant pulsatile tinnitus is new since the PE and he couldn't answer me. I felt like I got a brush off. I brought it up with the vascular surgeon, nothing. I brought it up with the cardiologist and he mumbled something about plaque causing turbulence but I've been scanned and everything is clear in my head and neck. I brought it up with my primary, nothing... although I have now been diagnosed with hypertension and now taking Lopressor 25mg twice a day. It's helped the BP but the pulsatile tinnitus is as loud as ever.

      Some days I want to cry. Toss in the ear-ringing and it's really noisy, you know? Super frustrated and worried something's being missed.
       

Share This Page

Loading...
If you have ringing ears then you've come to the right place. We are a friendly tinnitus support board, dedicated to helping you discuss and understand what tinnitus treatments may work for you.