Tinnitus, Now Pulsatile Tinnitus?

Discussion in 'Support' started by DJHazey, Mar 6, 2014.

tinnitus forum
    1. DJHazey
      Frustrated

      DJHazey Member

      Location:
      Maine
      Tinnitus Since:
      03/2013
      I had surgery in April 2013 to remove a cholesteatoma in my right ear and have had regular tinnitus "sea shell" type ringing since. I have learned to deal with this constant sound and it doesn't even bother me and never really has. Around three weeks ago I've had a chugging, whooshing, sometimes like a rumbling thunderstorm sound on top of it. For the first couple of weeks it'd be bad one day for like half the day and unnoticeable the next. Then three day ago a recurrent cholesteatoma was found and removed in-office by my ENT. I thought this new sound was from that because this recurrent one grew really fast over the past month. However, since this "PT" type sound is worse. It's not necessarily constant all day, but seems like it is. I have a bad bout with it for a good half a hour every morning. Then it settes down for a while and comes back when I get home from work like a house of fire when I quietly sit at my computer. If it goes off, when I shift my head like I'm looking at the ceiling it dies down temporarily. If I look down it triggers it. Shifting my head with my right ear pointing towards my shoulder makes it go away temporarily. Doing that thing where you press yur hand againt the ear canal and suction it out makes it stop temporarily. I hear it when I lie down to sleep but I have been able to fall asleep so far without any issue. Any advice would be welcomed with open arms. Thanks! :)

      PS - I have checked my pulse and it goes at the same beat that's why I think PT.
       
    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, DJ, and welcome!

      I'm sorry you've ended up with both tinnitus and maybe pulsatile tinnitus as a result of your cholesteatoma surgeries. What you've described does sound like symptoms of pulsatile tinnitus, based on what I know of it.

      I'm both a tinnitus and pulsatile tinnitus sufferer myself. Both of mine are constant, but since I've had both for 3 1/2 years, mine have calmed down quite a bit.

      Could yours have been caused by the cholesteatoma, or from the surgery? Yes, I do think it is possible. Have you had an opportunity to talk to your doctor about it yet? The surgery may have aggravated your already-sensitive ear, and caused this to begin. It's possible that it might eventually go away on its own, after your ear has a chance to settle down after the recent surgery.

      My advice is to observe it, and see if the symptoms subside after awhile. If not, the next step might be to go to your doctor and ask if this might have been a result of the surgery. The doctor might be able to suggest things you can do to minimize the symptoms, and tell you if this is a common occurrence with this type of condition.

      I wish you well, and certainly understand what you're going through right now. Mine always seems worse in the late afternoon, too. I don't know if it is because it is more noticeable when returning to a quiet house, whether the computer has something to do with it, or if it has to do with increased blood pressure in the afternoon.

      Take care, and have a calm, quiet evening!
      Karen
       
      • Like Like x 1
    3. DJHazey
      Frustrated

      DJHazey Member

      Location:
      Maine
      Tinnitus Since:
      03/2013
      Thanks so much for your reply! The blood pressure idea is interesting, but everytime when I went to my ENT the nurse does my vitals like normal including blood pressure and mine is not just normal but good according to the nurse. I do notice it got worse whenever I exerted myself though (it got louder and faster). Since I had seen on here that blood pressure can be a cause of PT.

      I did call the doctor the first morning that the PT was worse after the second Cholesteatoma removal. He said to go to drops twice a day until Sunday (I had been doing once a day). If it was still bad he wanted me to see his understudy while he was away on vacation. I see him when he gets back from vacation anyway on the 17th. My ENT checks in daily when on vacation on any new status of all of his patients. Yesterday I took my morning drops and noticed it was really bad immediately and instantly thought the drops were making things worse. It was pretty bad most of the day at work. I blew my nose because I've had a stuffy one lately and it cleared up for awhile and came back. Put drops in at home after work and worse again, but then gradually better the rest of the evening.

      This morning, it is less. If I listen for it I can hear it way in the background but generally don't notice it (I think it may be because my regular tinnitus is louder today and blocking anything else out). I was afriad to do drops because of yesterday and this new found better feeling but didn't want to go against the doctor's orders because I think he wants the drops to help heal the cholesteatoma removal. So far they haven't even made things worse but I knock on wood. I don't think I'm out of the woods yet, but so far I'm at least having a quieter day.
       
    4. 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'm glad to hear that things are quieter for you today. It could be that you have some swelling after your second surgery, and that maybe could be causing the pulsating sound (?). I'm hoping that your pulsating will improve as the healing continues.

      Please do keep me posted on how you're doing.

      Best wishes,
      Karen
       
      • Like Like x 1
    5. DJHazey
      Frustrated

      DJHazey Member

      Location:
      Maine
      Tinnitus Since:
      03/2013
      Thanks for the well wishes. Friday was okay until I sat down that evening to play some video games and it decided to kick in. Seemed to go away at bedtme though. Saturday morning until the evening if I heard anything it was light whistle sound instead of the harsh whooshing, but for the most part was really good. Satuday night I went over to my parents house to watch movies and it was like Friday night. It was there but I've had worse. Sunday morning/early afternoon good like early Saturday. Sunday night my ear had some bleeding again, and it the whooshing became more apparent, and woke up with it there this morning. Don't know if the bleeding caused it or what. Even at it's worst right now it doesn't seem to be as bad as when it was at it's worst last week. Maybe it's just because my body is getting used it(?).
       
    6. 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
      It could be that you're getting used to it, or maybe it really is getting better. I think there is a lot of reason to hope that yours will eventually go away on its own, as your ear heals. Thanks for the update!!
       
      • Like Like x 1
    7. DJHazey
      Frustrated

      DJHazey Member

      Location:
      Maine
      Tinnitus Since:
      03/2013
      It's definitely getting less and less. If I do hear it it's much quieter. There are some days where I don't notice it at all. It could be me getting used to it like I got used to the T. My doctor was very happy with my overal progress on my ear Monday. I'm beginning to think the PT was linked to the new cholesteatoma and then swelling after removal of it. The ear drops I believe are helping because I drowned my ear with them twice a day (doctor's orders).

      Me and the doctor have come to a speculative reasoning that maybe PT is a early sign of a growing cholesteatoma if I have more recurrences. Since I have ETD, its likely I'm not out of the woods forever.
       
    8. DJHazey
      Frustrated

      DJHazey Member

      Location:
      Maine
      Tinnitus Since:
      03/2013
      Went to my ENT Monday for a normal checkup and of course PT was still faintly sounding if at all. So I just focused on my post-surgery stuff. Then all is fine until last night and I don't even know what caused it but my PT is sounding alot like it did in early March again. Rushing/Roaring beats are back. I just wish I could figure out the trigger and try to avoid it if there is one. I did good when I was diagnosed with Acid reflux and managed my foods and timing, but then got Prilosec which allowed me to eat whatever I want without symptoms. Unfortunately I don;t think there is a way to "manage" avoiding PT outbreaks. :(
       
    9. citigirl13
      Dreaming

      citigirl13 Member

      Location:
      North Yorkshire, England
      Tinnitus Since:
      17/1/14
      Unfortunately I don't think there are any straightforward answers to stop a trigger - it usually happens without reason, particularly with PT. Sounds like you are doing better though, so hopefully it will fade.
       
    10. DJHazey
      Frustrated

      DJHazey Member

      Location:
      Maine
      Tinnitus Since:
      03/2013
      Thanks, I agree if it's something that is so hard to find a cause for how would we know the triggers right?

      The biggest hurdle I'm finding is learning not to react to it. I almost feel like if you can teach yourself not to react emotionally/mentally to it then it doesn't "seem" as bad. I was getting good at not reacting to the small sounds but now with the big bad whooshes I've been having again it makes my training to not react infinitely harder.
       
    11. citigirl13
      Dreaming

      citigirl13 Member

      Location:
      North Yorkshire, England
      Tinnitus Since:
      17/1/14
      I think the volume of the sound is the hardest part. When mine is low it is quite easy to ignore, but when it loud it feels like my whole head is ringing. You will get there though. If the sound has gone down once before, it can go down again. Keep that in mind. You are on the right track about not reacting to it; in my mind the T wants us to notice it, so ignoring it is the best way to win. Try to keep relaxed and busy, and hopefully the sound will go down before you know it!
       
      • Agree Agree x 2
    12. Marie

      Marie Guest

      I have been diagnosed with ETD after an ear infection with effusion. Would you mind telling me about your cholesteatoma surgery? What were your symptoms before the first cholesteatoma was discovered? How is your hearing? Did you have to have any ear bones removed? I'm afraid I might have this same condition or will acquire it. It would be nice to hear from somebody who has been thru it. I also forgot to ask if you have had tubes in your ears. I had tubes when I was 10.
       
    13. DJHazey
      Frustrated

      DJHazey Member

      Location:
      Maine
      Tinnitus Since:
      03/2013
      Hi Marie, I'm sorry to hear about your diagnosis and your concerns associated with it. I was 29 years old when I first started having multiple ear infections. I never remembered having them as a child (which shocked the doctors). The multiple ear infections in a short period of time is what sent me to an ENT. Also my ear was whooshing to the beat of my heart and I could hear it whenever it was quiet.

      ETD makes your middle ear a vacuum because the pressure is not equalized with the outer part of the ear. This can tend to suck your middle ear and ear drum inward. A pocket can form from part of the ear drum and skin cells collect in this pocket and the pocket grow bigger and into your middle ear towards the the hearing bones. It took my ENT a few looks to discover my cholesteatoma because it grew upwards from the ear drum. He said despite the fact that I've likely had ETD since birth, the cholesteatoma could have just grown quickly out of nowhere like a sleeper cell. Also it could have been slowly growing for decades even.

      The #1 objective of the surgeon (your ENT) is to remove the cholesteatoma. The cholsteatoma will unfortunately compromise any hearing bones in its path, but the surgeon will try to save any of them he can. Unfortunately I have found that my tinnitus has been permanent but not debilitating since surgery, and PT comes and goes with bad episodes. I have a feeling these are symptoms related to the conductive hearing loss since I only really have a my stapes right now (malleus and incus are gone).

      Just because you have ENT does not mean that you will get a cholesteatoma but it puts you more at risk. I personally would get yourself recommended to whoever your GP says they trust as a ENT expert. If you get multiple ear infections, get tinnitus, pulsatile or not, have prolonged symptoms like an ear infection would be present without the infection, etc. you should be referred to an ENT by your GP. The ENT would be only kind of doctor who would be able to detect a cholesteatoma early.

      I also did have hearing loss before diagnosis and now my hearing is significantly less in my right ear then my left but still can hear sounds in my right ear just not nearly as pronounced.

      I hope you never get a cholesteatoma but keep us updated with you condition please.
       

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