New Here! Struggling with Positional Pulsatile Tinnitus

Discussion in 'Support' started by SunflowerPT, Oct 9, 2019.

    1. SunflowerPT
      Wishful

      SunflowerPT Member

      Tinnitus Since:
      08/2019
      Cause of Tinnitus:
      Unknown
      Hello! I am very grateful to have found this forum. I have had PT since mid-August 2019. I had pneumonia at the end of July which resolved, and did not have PT during this illness. A few weeks after I was feeling better, I randomly started noticing a whoosh in my right ear and that's when this all began.

      My whooshing sounds exactly like a baby's heartbeat on an ultrasound. It is in sync with my heartbeat. It is only in my right ear. If I am standing up straight, I do not hear it. I only hear it when I tilt my right ear down to my right shoulder. I also hear it when I twist my neck all the way to the left, with my chin touching my left shoulder. I will also get it sometimes leaning forward and to the right. The PT will stop if I lightly press my neck on the right side. The sound is worse at night. It's not very noticeable during the day, but maybe I do not hear it because of typical daily sounds. My ear does feel a little full.

      From research online, this all seems to indicate a venous problem. What I can't figure out is what my intermittant PT could indicate. If you have a venous problem, wouldn't you hear the PT all of the time? I definitely do not hear it constantly. Just when my head is turned. What could that mean? I'm scared of fistulas or artery dissections or aneurysms, but wouldn't I hear the PT constantly if I had one of those issues? I have not found much information online at all that gives solutions to positional PT.

      I have been to my doctor. I went at the end of August after having the PT for about 2 weeks. She said there was fluid in my middle ear that could be amplifying my blood flow. She made no mention of hearing a bruit, she had her stethoscope on my neck and scalp so I assume that's what she was checking for. I took Flonase for a month. It didn't help. I went back to the doctor - saw a different one in my practice. She said that I still had fluid in my ear but not a ton and not enough to cause PT in her opinion. So today I am now going for an MRI, MRA, and ultrasound of my neck and arteries.

      So what do you think? I am feeling VERY anxious and scared to find out what is going on. My family has a history of aneurysms and I am terrified it could be one or some kind of brain tumor. What could the positional PT indicate? If it were truly something bad going on inside my head, wouldn't I hear the PT constantly? I am so confused and scared. I also read about something called Fibromuscular Displaysia which also has me so very scared. There's no cure and you carry a high risk of stroke. Anyone know anything about this?

      Thanks for reading all of this! I will post my results when I have them, but in the meantime was just looking for any thoughts or ideas or related experiences of what could be happening to me. The positional aspect of it really has me confused. Thank you all!
       
      • Hug Hug x 1
    2. tiniturtle

      tiniturtle Member

      Tinnitus Since:
      3/19/2017
      Cause of Tinnitus:
      Paromomycin
      This does sound venous in nature, as that's how mine was also, it doesn't remain consistent. It actually disappeared at times. Your scans should give you some answers. Let us know what you learn.
       
      • Like Like x 1
    3. AUTHOR
      AUTHOR
      SunflowerPT
      Wishful

      SunflowerPT Member

      Tinnitus Since:
      08/2019
      Cause of Tinnitus:
      Unknown
      Thank you for the response! I see from your posts you had a DAVF diagnosed via MRA? I'm worried about this being one of the things I potentially have. Throughout the day I really don't hear it unless my head is tilted. When I tilt, I almost hear a rush of whoosh first, like a roaring sound, and then it settles into the PT whoosh with my heart beat. Part of me is still holding out some hope for fluid in my ear causing this or some type of eustachian tube defect, but I think that's just a pipe dream now and I'm frightened as to what will be found today.
       
    4. tiniturtle

      tiniturtle Member

      Tinnitus Since:
      3/19/2017
      Cause of Tinnitus:
      Paromomycin
      Often times PT is caused by something vascular, so it's good that you're being proactive and getting it checked out. The risk of doing nothing far exceeds the risk of any treatment you may receive for it. From the way you describe it in your second post, that definitely sounds like something venous, that's exactly how mine presented. You could just have a narrowed dural sinus vein, which isn't that serious. I still have that on one side, due to the delay in my original diagnosis. I had the davf, and the vein, in an effort to "fix" it, shut down completely. A few months after the davf was cured, the vein reopened again, but it's narrowed, so I'm still left with the rushing sound when I sit up out of bed, etc. I had a second davf on the other side, and that was cured also,but the vein was stented this time to keep it open fully.

      Also, when I had the first davf, after a while my PT stopped completely. This is NOT a good thing. That's when the vein shut down and it was pushing bloodflow backward into my brain. It became life threatening at that point with minimal symptoms. I had surgery a week after that was discovered.
       
      • Like Like x 1
    5. dandy
      Scared

      dandy Member

      Tinnitus Since:
      2019
      Cause of Tinnitus:
      Unknown
      Wow, I feel like I could have written this part of your post. Actually, nearly all of it sounds relatable (the sound is even on my right side).

      Please let us know what happens! I unfortunately can't get in to see my doctor until December. Hopefully they take my symptoms seriously.

      Does yours consistently sync with your heartbeat? Mine confuses me, because sometimes the fluttering sound in my right ear is really rapid and definitely quicker than my actual pulse.

      Take care!
       
      • Like Like x 1
    6. AUTHOR
      AUTHOR
      SunflowerPT
      Wishful

      SunflowerPT Member

      Tinnitus Since:
      08/2019
      Cause of Tinnitus:
      Unknown
      So I had an ultrasound and an MRA performed today. I thought I was getting an MRI also, but that wasn't in the order. Have to follow up on that.

      The ultrasound tech said everything looked great with the neck/carotid arteries. I am still waiting for the MRA results. Is no news good news? I had it done 5 hours ago. That should have been enough time for the radiologist to interpret the scans, right? If it was something urgent like an aneurysm would they have called today? Or do they let something like that sit overnight? Sorry, my anxiety is through the roof.

      Dandy, yes, my PT is in sync with my heartbeat. Sometimes it does sound like an initial rush like when I get out of bed or bend over, but then it settles right into my heartbeat. Whoosh whoosh whoosh. Again, it is only intermittant when my head is in certain positions. As I sit here and type, I hear nothing.

      Tiniturtle, I'm so sorry you have had to go through so much! I still have my PT, so it hasn't stopped at least. I have had sinus problems in the past, I was always very prone to sinusitis. Could intermittant PT be cause by a sinus issue? I'm wondering if the pneumonia I had over the summer irritated something that was already sensitive. I still feel like I'm grasping at straws and just waiting for The Really Bad Phone Call.
       
    7. tiniturtle

      tiniturtle Member

      Tinnitus Since:
      3/19/2017
      Cause of Tinnitus:
      Paromomycin
      Don't worry just yet. An aneurysm doesn't really cause these type of symptoms, so don't worry about that. And even if it were (it isn't), if you catch one of those before it bleeds, they can be cured easily nowadays. No news is good news. I would see about getting an MRI too, that will only help confirm your diagnosis. Let us know what the news is, and if you need suggestions or help at that point, feel free to direct message me also.
       
      • Like Like x 1
    8. AUTHOR
      AUTHOR
      SunflowerPT
      Wishful

      SunflowerPT Member

      Tinnitus Since:
      08/2019
      Cause of Tinnitus:
      Unknown
      Thank you, tiniturtle! You have been very helpful and I appreciate it so much. I will definitely post when I hear back from the MRA. I stress about aneurysms because we have a family history. I had an MRI/MRA done in 2015 and those showed up clean. Hoping nothing vascular has developed since.
       
    9. DBW

      DBW Member

      Tinnitus Since:
      08/2019
      Cause of Tinnitus:
      Unkown
      Hey Sunflower. Just wanted to reach out and see if you received your results yet. I am dealing with exactly the same thing. Went to an ENT 2 months ago and he saw nothing. The PT disappeared for a while, then within the last 2 weeks it came back super strong. I believe mines related to stress & a spike in blood pressure because whenever I’m not feeling well that’s when it is at it’s worse. Looking forward to your update!
       
    10. AUTHOR
      AUTHOR
      SunflowerPT
      Wishful

      SunflowerPT Member

      Tinnitus Since:
      08/2019
      Cause of Tinnitus:
      Unknown
      @DBW I am still waiting for my results! The anxiety, ugh. I will definitely post when I receive them.
       
    11. AUTHOR
      AUTHOR
      SunflowerPT
      Wishful

      SunflowerPT Member

      Tinnitus Since:
      08/2019
      Cause of Tinnitus:
      Unknown
      Got my results yesterday late afternoon. MRA and ultrasound of carotid neck arteries were normal. Being referred to an ENT now.
       
    12. tiniturtle

      tiniturtle Member

      Tinnitus Since:
      3/19/2017
      Cause of Tinnitus:
      Paromomycin
      That's good news. If you end up at a dead end with ENT (they will probably shrug their shoulders and tell you to deal with it), an MRV would be the next logical step, to inspect the veins of your head. Sometimes one gets narrowed for whatever reason, which isn't usually dangerous.
       
    13. AUTHOR
      AUTHOR
      SunflowerPT
      Wishful

      SunflowerPT Member

      Tinnitus Since:
      08/2019
      Cause of Tinnitus:
      Unknown
      I made my appointment with the ENT but it is not until November. They also want me to do a hearing test first. The receptionist I spoke to on the phone said she was very concerned that I was having PT this long and I needed the hearing test ASAP.

      So of course I got scared - health anxiety, yay! I asked her why it was so urgent for the hearing test. I asked if it was anything life threatening because I thought that's what the MRA ruled out. She said if it's pulsatile tinnitus that wasn't good and could indicate early hearing loss or problems in the middle ear. That's all she would tell me.

      So of course now I'm a big bundle of nerves again and I've got 3 weeks to wait before a hearing test. Any thoughts on these latest developments?
       
    14. tiniturtle

      tiniturtle Member

      Tinnitus Since:
      3/19/2017
      Cause of Tinnitus:
      Paromomycin
      I'd say you should relax. If your MRA didn't show anything, you're likely not in any danger. I would still seek a consult with an interventional radiologist. Don't wait though, see if you can get the ball rolling now.

      As for the hearing test, it's really not going to yield any useful information. If you have PT, that means your ears are hearing things just fine. Most of the time it isn't related to your ears at all. This is what I mentioned before about ENT and audiology really not knowing what to do or how to diagnose or treat PT. It isn't their fault, they just receive virtually no training for this. I feel the hearing test is a good thing to do to set a baseline, otherwise it's mostly a waste of time, it won't be of any diagnostic value, in other words. Get it done, but don't expect anything useful to come of it.

      That is what I was referring to here:

      https://www.tinnitustalk.com/thread...d-to-do-to-get-answers-and-a-diagnosis.36645/

      ENT and audiology were a massive waste of time (for me), and delayed my diagnosis by months, to the point where it became life threatening, and they were completely clueless. An interventional radiologist diagnosed me immediately.

      Read this also:

      http://neuroangio.org/diagnosis-and-treatment-of-pulsatile-tinnitus/

      That site was put together by the doctors at NYU Langone, where I was treated, and they are one of the best in the world for treating these types of issues.
       
    15. AUTHOR
      AUTHOR
      SunflowerPT
      Wishful

      SunflowerPT Member

      Tinnitus Since:
      08/2019
      Cause of Tinnitus:
      Unknown
      @tiniturtle I think one of the reasons they referred me to the ENT is because I still have fluid in my middle ear. The last doctor I saw said it wasn't a huge amount or anything, but that there is a little bit in there. Combined with my PT being positional and the clean MRA, I guess they figured that was the next step?

      The article you linked was a great read, thank you! One thing I can't stop focusing on, though, is that my PT isn't constant. Now I am wondering if I have some kind of cyst or growth? But wouldn't that result in the PT being constant and non-positional? Can TMJ cause positional PT? I do have pain on the right side of my face, the side with the PT. It is in the cheekbone, but the part of it that travels back to the ear, if that makes any sense. So the tail end of my cheekbone, if you trace the bone, back to my ear. My actual jaw does not hurt when eating or chewing, though. I have also had face twitching right around that bone area as well. Once before the MRA and once after. It feels tight there sometimes.

      I know it's just a laundry list of symptoms I have, which makes it frustrating. Who knows if any of these are linked or not? And why the PT just suddenly started in the first place? Since the MRA is clean, I'm interpreting that as my PT being a non-vascular cause ... but the article says PT is usually a vascular cause so I guess I am just feeling a little lost and hopeless.

      Oof, sorry to vent. The phone conversation today really got me nervous. I am also frustrated at the lack on info online about what causes positional, non-constant PT. Unless it really is just some stubborn fluid in my middle ear? Even though it's not a lot?
       
    16. tiniturtle

      tiniturtle Member

      Tinnitus Since:
      3/19/2017
      Cause of Tinnitus:
      Paromomycin
      Just one thing at a time, and don't stress. Stress and anxiety never made any situation better, ever. There's a possibility your PT could be super benign, like the fluid just amplifying the sound of the bloodflow in your head. That definitely happens too. It could go away on it's own in time, but it's good that you're getting it checked out. I'm not trying to worry you or have you think it's something really bad, I just don't want people assuming it's harmless either, without getting it checked out.
       
    17. AUTHOR
      AUTHOR
      SunflowerPT
      Wishful

      SunflowerPT Member

      Tinnitus Since:
      08/2019
      Cause of Tinnitus:
      Unknown
      Random update!

      Still waiting on my ENT appointment. About a week and a half ago the PT got worse. Loudest it has ever been. My ear also started hurting a lot. Convinced I had an ear infection and scared of the change in PT intensity, I went and saw another doctor in my practice.

      She said zero signs of infection, but I had quite a bit of fluid built up in my middle ear. She said it was clear, which is a sign of allergies, but I usually don't suffer from any allergies.

      She put me on a Medrol pack to try and calm things down and ... it helped. After about a day and a half of taking it, the PT got quieter and eventually subsided and disappeared. I was floored. I'm assuming something happened to let the fluid drain from my ear. There must be inflammation somewhere caused by something that is making all this fluid build up.

      HOWEVER ... the medication is now over and guess what slowly returned: my PT. I'm hearing the old, familiar whoosh whoosh whoosh as I sit here and type. So now I'm wondering what is inflammed in my ear? Is this a eustachian tube defect? Could I have some sort of growth or cyst or tumor in my ear? Though if I did, it wouldn't have responded to the Medrol and improved, would it?

      I feel like I made some progress in understanding what is happening but still have no answers. I'm feeling a bit relieved that maybe my PT is truly caused by the buildup of fluid in my ear but now I am scared as to WHAT is causing that buildup.

      Anxiously awaiting my ENT appointment!
       
    18. tiniturtle

      tiniturtle Member

      Tinnitus Since:
      3/19/2017
      Cause of Tinnitus:
      Paromomycin
      If that's all it is, consider yourself lucky. If it doesn't resolve, do not rely fully on ENT's opinion. Make sure to ask them about concern about it being something vascular. If they act like it's not, or can't comment on that, and your symptoms still persist, be sure to see an interventional radiologist.
       
    19. astaff14

      astaff14 Member

      Tinnitus Since:
      03/2018
      Cause of Tinnitus:
      Unknown
      Hello! Sorry you’ve been dealing with this. I don’t have positional PT in the same way you do, I only get it when I am laying down, on my left side, which is also my worse ear in terms of regular tinnitus. It’s pretty puzzling but I think it has to do with a nerve being pinched in the neck when I’m positioned that way. I don’t know for sure though.

      Hoping you get some answers and that you feel better!
       
    20. tiniturtle

      tiniturtle Member

      Tinnitus Since:
      3/19/2017
      Cause of Tinnitus:
      Paromomycin
      Nerve issues pretty much never cause this. You should get it checked out. The reason it's positional, is because your blood flow and blood vessels move and change as you move. It's likely vascular.
       
    21. AUTHOR
      AUTHOR
      SunflowerPT
      Wishful

      SunflowerPT Member

      Tinnitus Since:
      08/2019
      Cause of Tinnitus:
      Unknown
      I have an update!

      I finally saw the ENT today. I also had a hearing test done. My hearing test came back 100% normal. Surprisingly, I had NO fluid in my ear. I was shocked! Then I started to get nervous. I had convinced myself that my PT was from fluid and that we were going to find a solution. So I was getting anxious. I had actually been comforted by the thought of fluid in my ear since that seemed somewhat benign to me. Well, there was no fluid today and I definitely still have been having the PT, so I was upset.

      The ENT examined me and she took A LOT of time. I really appreciated it. She said my hearing test is excellent and that my ear looks like a totally normal ear. She asked me a lot of questions about fullness in my ear and what positions I heard the PT in, what exactly it sounded like, and also thought it was interesting that sometimes I could almost "hear" and "feel" my exhales through my ear. She said the MRA and ultrasound I had done really rules out anything vascular. She doesn't hear any bruits anywhere on me. So she said she was confident that was not the cause.

      Her theory right now is that I have something called Superior Canal Dehiscence. She said it's not life-threatening and it's something you can live with, as long as it is not disturbing your balance or causing vertigo (which for me, at this moment, it is not). The next step is to do a CT Scan to confirm this. She thinks this is all because of the pneumonia I had earlier this year. She said forceful coughing (which I totally had for weeks) can cause damage to one of the canals in my ear and can cause damage to the teeny tiny bones or membranes there, which can cause PT and all these other symptoms I'm experiencing. Her theory is I only get the PT in certain positions because those are the positions my head is in when pressure is put on the superior canal by my blood vessels and, well, basically matter of my body.

      So I'll get my CT Scan scheduled and go from there ... there are surgeries to correct this, but as long as it is not interfering with my movements and balance, it could just be something I have to live with. Will definitely update again once I find out more.
       
    22. tiniturtle

      tiniturtle Member

      Tinnitus Since:
      3/19/2017
      Cause of Tinnitus:
      Paromomycin
      Good for you. I'm glad you're getting it evaluated.
       
      • Like Like x 1
    23. AUTHOR
      AUTHOR
      SunflowerPT
      Wishful

      SunflowerPT Member

      Tinnitus Since:
      08/2019
      Cause of Tinnitus:
      Unknown
      Aaaaaaaaand CT Scan was normal. Back to the drawing board now. Going back to the ENT in January for follow up. Soonest I could get. I just don't know what to think now.
       
    24. tiniturtle

      tiniturtle Member

      Tinnitus Since:
      3/19/2017
      Cause of Tinnitus:
      Paromomycin
      Remind me, did you have an MRA?
       
    25. AUTHOR
      AUTHOR
      SunflowerPT
      Wishful

      SunflowerPT Member

      Tinnitus Since:
      08/2019
      Cause of Tinnitus:
      Unknown
      Yes, it was normal.
       
    26. tiniturtle

      tiniturtle Member

      Tinnitus Since:
      3/19/2017
      Cause of Tinnitus:
      Paromomycin
      What region of the world do you live in?
       

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