Another Pulsatile Tinnitus Thread

Discussion in 'Support' started by mtoafs, May 30, 2015.

tinnitus forum
    1. mtoafs

      mtoafs Member

      hey everyone...

      i've been suffering from T for the better part of ten years. mine is caused by years of playing drums in loud rock bands without wearing hearing protection. for the most part, i'm able to tune it out. it's only ever really noticeable when my surroundings are extremely quit. occasionally, i get loud ringing, usually out of nowhere and for no apparent reason. this tends to come and go rather quickly but can be pretty distracting. luckily it doesn't happen too often.

      for (at least) the last six months, i've noticed a strange sensation in my right ear. the best way to describe it is that it sounds like i have a sea shell up to my ear. it's not constant and only seems to happen when i bend over (but only if i bend over to the right - bending to the left or bending straight down does not cause the sensation) or when my neck is at a very drastic angle - for example, bending at the waist to look at something on a low shelf or holding a phone to your left ear by tilting your head and wedging it between your head and shoulder.

      a few other characteristics i've noticed:
      some days are worse than others.
      the sensation will eventually stop if i stay in one of these positions long enough.
      sometimes i feel like pressing on my carotid helps, other times it doesn't do anything.

      initially, i thought nothing of it until one dreaded day i decided to google my concerns.

      i made an appointment with my general physician who said my ear drum was red and it looked like i had some fluid in my ear. he gave me a nasal spray, told me to take an OTC allergy med and sent me on my way. i followed his instructions but after three weeks, it didn't seem to do much.

      at this point i returned to my general physician. this time he said my ears "looked fine." i was given a script for a steroid as well as antibiotics for a lingering cough stemming from a really crappy cold. after a few days on both, it seemed like the problem had disappeared. within a day or two of completing both meds, i started hearing the dreaded noise again.

      fed up, i made an appointment with an ENT. he was friendly and knowledgeable and the first question he asked me was whether the noise matched my pulse. i told him i didn't think so but at times it was hard to tell. he looked in my ears, sent me for a hearing test and told me he felt that while my hearing was "good considering what i do for a living" the hairs in my ears were damaged and that was causing it. he didn't feel i "had a tumor or anything" and didn't think further testing was warranted though he told me to return if it got worse.

      initially, i was satisfied with his answer and my anxiety diminished, but it soon came back with a vengeance. not wanting to deal with the wait or expense of a specialist i returned to my general practitioner, explained what i thought the issue was and that it was causing me a lot of anxiety and asked if he would be willing to schedule a carotid ultrasound for me which he did. otherwise he didn't ask me any questions about it or investigate it further.

      that was done on wednesday and while i'm still waiting for the official results, the tech that completed the ultrasound was nice enough to tell me at the end of it that "at this point, if i saw anything of concern i would go find a doctor... but i'm going to let you go home now..."

      my questions are... does this sound like PT? how accurate is an ultrasound? if the results show nothing of concern, is it worth pressing forward or will i just be wasting time in money and annoying my doctor by demanding more testing?

      if it matters, i don't think i have a brain tumor. i'm more concerned with blockages in my carotid.

      i suppose it would help to say that i'm male, 37, pretty overweight due to back injuries that prevent me from being as active as i use to be and depression that my stupid brain tries to treat by eating. i also suffer from "health anxiety" and generalized anxiety. i'm currently on meds for severe acid reflux as well as high blood pressure (which is under control with meds.) as of my labs last year, i don't have high cholesterol though my "good" cholesterol was a bit low.

      i'd love to hear what others had to say... and sorry for the length!
       
    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, @mtoafs ,

      I'm a pulsatile tinnitus (and regular tinnitus) sufferer myself; I've had the PT for five years now. Mine started after I took a blood pressure drug for the first time. Before that, I only had mild regular tinnitus (in one ear only).

      I've read your post, and a couple of things jumped out at me. First of all, you mentioned weight gain. I've heard of a number of other people with pulsatile tinnitus whose PT went away, or at least sudsided, after losing weight. Another possibility for you is that you have high blood pressure, which is another possible cause of PT. A third possibility to consider is benign intracranial hypertension, a condition of fluid buildup around the brain, that causes PT in some instances.

      My advice would be to wait until you get the results of the ultrasound from your doctor, and then make a determination as to whether it would be worth it to have more testing. I've heard that people who have benign intracranial hypertension found out they had it during an eye exam, because it shows up when the eyes are examined.

      I'd consider all of those possibilities before you'd go for more testing. As for myself, I've had a carotid ultrasound, a CT scan, and an MRI and MRA. All of those tests didn't turn up anything unusual. I've had PT for five years, and have since gotten myself off the blood pressure meds, and my T and PT have improved considerably.

      I wish you well, and would like to hear what the results of your ultrasound are. You are lucky that your PT isn't constant; mine is always there, with no letup, and is in sync with my pulse.

      Good luck, and please post again when you receive the test results.

      Best wishes,
      Karen
       
    3. mtoafs

      mtoafs Member

      thank you for your response. I've been creeping around these boards for awhile now and have read many of your posts about it.

      I'll definitely report back with the results.

      regarding the weight gain, I've been at my current weight for several years and was actually about 45 pounds heavier at one point.

      assuming the ultrasound comes back "normal" is that alone enough to rule out something like a blockage? I guess at this point my goal is to rule out any causes that could be potentially dangerous. financially, I'm not in a position to hunt for a diagnosis for something that's nothing more than a benign annoyance.

      sorry again for rambling. I only ask because my GP doesn't seem to know anything about PT and the ENT didn't seem concerned in the slightest so I'm kinda advocating for all of this on my own, which seems silly because I'm the one without the medical degree.

      thanks again for your time!
       
    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
      Hi, again, mtoafs,

      I agree that we have to be our own advocates when it comes to pulsatile tinnitus. Many of the doctors out there (ENT's included) do not know very much about PT, or don't have the time to help us find any answers. After your ultrasound comes back, if you are still concerned and/or having problems, I'd suggest going to a neurologist or neurotologist. They usually know a lot more about this condition, and can take the time to help with a possible diagnosis. I know what you mean about the financial aspect of having to search for a solution on your own.

      Have you thought about blood pressure as a possible cause for your PT? Even though yours is now under control, something may have changed that caused the PT to begin. I think that's what happened to me.

      Why don't you see what your doctor has to say when the results come back? Then, you can determine whether it's worth it to keep pushing for answers. In my case, I went to a second ENT for another opinion, and he is the one who ordered my MRI and MRA (both came back negative). When I went to a neurotologist, he ordered a CT scan of the temporal bone, to check for a dehiscence. That was negative, too. I'll be interested to hear what your test results are.

      Take care, and try not to worry!!
       
    5. mtoafs

      mtoafs Member

      thanks again for taking the time to respond. I've definitely considered BP as a factor if this indeed PT but it did go away while I was on the steroid despite my BP issues. I've wondered if this is more a problem with my eustachian tube since I don't get a clear pulse sound and it goes away if I remain in the position that causes it long enough. seems like if the cause was turbulent blood flow, it would continue as long as I was doing wherever caused 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
      From what you're describing, it does sound like it could be something else, other than PT. Hopefully, your ENT will be able to determine if it's a Eustachian tube problem. Since yours comes and goes, that's a possibility.
       
    7. mtoafs

      mtoafs Member

      @Karen - my carotid ultrasound results were "normal" with "nothing of concern noted."
       
    8. 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
      @mtoafs,

      Thanks for letting me know. That's good news! Perhaps then, as you said, yours is more a problem with Eustachian tubes. Is your doctor going to send you for any more tests?
       
    9. mtoafs

      mtoafs Member

      my doctor sent me for the ultrasound, basically, to appease me so I doubt it.
       
    10. mtoafs

      mtoafs Member

      I'm not sure what direction to turn to from here... if i should just deal with it or push on. it sounds like the two major concerns with PT are carotid blockages and tumors. I'm assuming (?) that the ultrasound is sufficient enough to rule out the blockages and I'm not suspicious of a tumor. Most other causes seem to be benign.

      I've been reading about Stapedial Myoclonus and that sounds like a possibility. something that has been happening as of late that I simply forgot to mention before is that I've been getting a very bizarre thumping / knocking feeling in my right ear when I'm listening to a phone call with my left ear. I think I forgot to mention it because I rarely talk on the phone so it doesn't happen often. When it does, it's much more of a physical feeling than the other stuff I experience when, say, bending over. It's almost as if you could see the cause of the problem if you were able to see the inner-workings of the ear. Sorry if that sounds crazy.
       
    11. 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
      Yes, that is a very weird symptom, but as you mentioned, it could be stapedial myoclonus. If I were you, I'd hold off pushing for more tests right now, and see if the symptoms subside any. Then, if it is still bothering you, you could seek out a second opinion. If you do go for that second opinion, my suggestion would be to seek out a neurologist or neurotolgist. They might have more knowledge of what PT is, and might be more likely to order tests for you.

      P.S. -- Did you hear about stapedial myoclonus from your doctor, or from doing your own research? And I was wondering if you asked your doctor about it, and if he thought that could be your problem?
       
    12. Aneta
      Supportive

      Aneta Member

      Tinnitus Since:
      2006
      Hi there, I feel your pain, I'm constantly anxious about the possible underlying problem that is causing my PT.

      I too have been suffering with PT for nine years. I'm 36 and I have always been in great health with no issues. I had an intense on on set nice years ago, along with common tinnitus, vertigo, and headache. Back then I had a CT scan and MRI without contrast, and the MRI showed I evidently had minor stenosis in anterior cerebral artery, but with good distal filling, so apparently it is not the cause as they believe that is from birth. I went to ear specialists, neurologists and everything has been negative. My symptoms improved so that I could cope in daily life, but a few days ago it came back with avenges, so I went to a urgent clinic yesterday and they did a MRI of the brain and IAC and everything was completely normal. They also looked at me like I am crazy when I told them my symptoms and on my chart it says I cam in with right war pain!!
      I just found a doctor recommendation on whooshers, a few weeks ago. Anyway, I'm just so glad that there is support out there, sometimes I feel like I'm the only one suffering as no one around me understands how annoying it is and the nerves of not knowing what causes it and the potential scary things that can.
      My case is also not always, usually just when I move my head a certain way, or when I get up from sitting squatting etc. But sometimes it happens on it's own when I'm laying down and it comes in waves.
      I have finally decided I'm going to go to the PT Clinic in San Francisco, I have not insurance so it is going to cost me a small fortune, but I need to know why I'm having PT.
      Good to you, hopefully your will go away on it's own, if not be persistent, and try to find out the cause, or you will be anxious.

      Good luck!
       
    13. 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, @Aneta,

      I certainly do understand what you're going through right now. Nobody understands how upsetting and miserable this condition can be unless they experience it for themselves. I've had PT for five years now, and I haven't gotten a diagnosis yet, either. I've been trying my best to live with it, and I have succeeded to some extent. But mine is constant, so in a way, it might be easier to adjust to a constant pulsating than it would be to an up-and-down pulsating.

      The PT Clinic in San Francisco sounds very promising! I would love to hear from you again as to how it goes at the clinic, and what their findings are. It is wonderful to know that there are some doctors out there who truly understand what this condition is all about.

      Good luck, and please post about your experience at the PT Clinic.

      Best wishes,
      Karen
       
    14. Aneta
      Supportive

      Aneta Member

      Tinnitus Since:
      2006
      @Karen, thank you so much for your reply! This is the first time I'v connected with someone who has PT.

      It is amazing that most doctors do not even know what PT is, and don't even understand what you are trying to tell them. Next week I am going for an ultrasound of my carotids, and then in August I will go to the PT clinic to meet the two doctors that founded it, and apparently I am going to have an MRA without contrast that has a special frequency, that is programed to find almost anything, so I will keep you posted on how that goes!

      Feel free to message me whenever, good luck.
       
    15. 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
      Thanks, @Aneta! I am excited for you about the test. I hadn't heard of the special-frequency MRA (without contrast). I hope you find some answers. Nine years of PT is a very long time!!
       
      • Like Like x 1
    16. Aneta
      Supportive

      Aneta Member

      Tinnitus Since:
      2006
      @Karen, hi how are you doing? I just wanted to give you an update, that I had a carotid doppler ultrasound this week, and everything was normal. I'm very happy but I also know that there is still a long road ahead to find the cause. I'll keep you posted.
       
    17. 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, @Aneta,

      I'm glad to hear your Doppler of the carotids didn't show anything. That's good news, but it still doesn't solve the problem of your PT. I certainly share your frustration; on the one hand, you're happy. On the other hand, you wish it had shown something!

      You mentioned that you'll be going for a special MRA soon, and I hope that it reveals something for you. I've recently heard of a specialized MRI called a FIESTA (I'm pretty sure that's it). Will yours be something like that?

      Thanks for keeping me posted on how you're doing, and I hope you find some answers soon!
       
    18. Aneta
      Supportive

      Aneta Member

      Tinnitus Since:
      2006
      @Karen I will be going in towards the end of August for the special MRA. Can't remember what it is called, but I don't remember hearing anything by that name. I will keep you posted! Thanks for being supportive!

      How are things on your end?
       
    19. 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
      @Aneta,

      Thanks, Anita. Yes, I want to hear about the results after your MRA.

      On my end, things are about the same. I have had this condition for five years; I have both a high-pitched hissing tinnitus, and a constant pulsating tinnitus. I've had a bunch of tests, but nothing has been found. Right now, I'm living with my condition as/is. I'm coping as best I can. Trying to stay busy helps the most.

      Take care, and I hope you get some answers!

      Karen
       
    20. Aneta
      Supportive

      Aneta Member

      Tinnitus Since:
      2006
      Hi Karen @Karen,

      I wanted to ask you, does this web-site have a private message area? I would love to communicate with you, and ask a couple questions. Let me know if there is, or if you feel comfortable sharing your email. Thank you..
       
    21. 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, @Aneta

      I saw your message, and have started a private conversation for us. Please check your In box at the top of the home page.

      To start a conversation, go to In box, then click on Start a Conversation. Type in the names of the people you want to include in the conversation, and write your message, then send.

      I hope you're having a good day!!

      Best wishes,
      Karen
       

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