Possible Cause of Pulsatile Tinnitus

Discussion in 'Support' started by Jon J., Sep 29, 2014.

tinnitus forum
    1. Jon J.

      Jon J. Member

      Tinnitus Since:
      4/2005
      I have suffered with Pulsatile Tinnitus for over ten years. My PS is a rhythmic hissing sound that is in sync with my heat beat. The sound is mostly on the left side. I have had most ever test, exam, scan/image done to try to determine what the cause of my PS is from. Most recently I went to see Michael J, A, Robb, MD Robb Oto-Neurology Clinic in Phoenix, AZ. He specializes in disease and disorders of the ear and the brain including vertigo, dizziness, imbalance, tinnitus, ringing and sensitive ears. They performed a CT scan of the temporal bones w/out contrast. This was a much more sensitive CT exam then was conducted before. What they found was "There is a severe focal thinning or dehiscence involving the floor of the left middle cranial fossa at the level of the left temporomandibular joint. The clinical significance of this finding in this patent is not certain." I guess what this means is the bone in the scull that separates the left side of the ear is very thin. The doctor believes that this is what may be causing my PS tinnitus. I am hearing the blood rushing through the veins and arteries on the left side of my head. The doctor feels this is correctable by relining the left side of the base of the skull at the left middle cranial fossa at the level of the left temporomandibular joint. I would love to get rid of my PS but this procedure sounds like brain surgery. The surgery according to the doctor, involves lefting the brain while the base of the skull is relined. I will be getting a second opinion. I will most likely live with this problem unless someone can convince me that this will correct my PS and the risk of the surgery is low. My PS effects my hearing and makes it very difficult to sleep at night. My question to the doctor is how did the bone in the base of the skull become thin to cause the PS. My PS suddenly showed up one morning when there was nothing there before. The doctor has me on a regiment of vitamins base on recent blood work that showed low levels of various constituents. I will be getting my blood retested in 3-months. Any comments from anyone that has a similar problem or diagnosis would be appreciated .
       
    2. RichL
      Inspired

      RichL Member Benefactor

      Location:
      Palmerston North NZ
      Tinnitus Since:
      1990
      Cause of Tinnitus:
      Acoustic trauma
      I get PS in my left ear as well, but it is occasional and not all the time, it started a little while after my T started, as far as being because of a thinning in the bone I would be very skeptical if I was you and would seek further opinions.

      Wish I could offer you more but your post is the first I have heard of that being the cause of pulsatile Tinnitus, hopefully someone else here maybe of further help to you.

      Rich
       
    3. billy43
      Lucky

      billy43 Member

      Location:
      nj usa
      Tinnitus Since:
      9/28/13
      hi jon j.i also have Pulsatile tinnitus.mine is also a hissing that is in sync with my heart beep.my ct of the temporal bone came out ok.i would definitely get a second and even a third opinion.it sounds like serious surgery and my guess is they wont be able to guarantee that your PT will be eliminated.in my research I did see that Dr Robb is highly regarded with Pulsatile Tinnitus and has cured some of his patients.Whooshers .com also list some cases similar to what you describe.those people went through with the surgery and their PT was greatly reduced or eliminated.well good luck with things and please keep us updated on how things work out for you. thanks billy43
       
    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 agree with Billy43. I'd definitely seek out the opinions of other specialists before considering this surgery. I believe I responded to you on another thread about this, Jon. There are a couple of doctors recommended on Whooshers.com who would be willing to review your scans (for a fee), and give you a second opinion. Whooshers.com suggests seeing a neurointerventional radiologist for assistance. One that comes highly recommended is Dr. Maksim Shapiro, at NYU Langone Medical Center.

      Good luck, and please let us know what you find out, and what you decide to do regarding the surgery.

      Best wishes,
      Karen
       
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    5. Jon J.

      Jon J. Member

      Tinnitus Since:
      4/2005
      Thanks for the info. The search for a cure goes on..
      Jon
       
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    6. lyndy

      lyndy Member

      Tinnitus Since:
      10?2000
      Hi. I am new at this so please bare with me. My hearing issues started 14 years ago and am still looking for answers after going to multiple kinds of drs and many test. My PT started with fullness in my left ear, mind you, i had not taken any kind of medication so it didn't happen because of meds. Then the pulsatile started started. It sounded like someone driving down the street with their base all the way up. Five years later and many more tests and Drs, my right ear started the same path. I have mostly fullness in both ears and pt all the time. Every hour varies in the sound in my ears. I have had every kind of noise imaginable, noises so loud I couldn't believe the person next to me couldn't hear it. My right ear was better then my left and for 12 years I thought I didn't have any hearing in that ear but after strong antibiotics for several months, my left ear opened up and I could hear perfectly. It only lasted for a short time because I went off the antibiotics, but I did learn that I wasn't deaf in that ear as some of you might discover. Im sure you all know how debilitating this can be and makes you antisocial. I swore I would never go to another ENT again, but i moved and noticed that my hearing got better. Found out my immune system was so low I was allergic to 13 airborne allergens. When I moved, I found, since my hearing seemed better, I went in for one last hearing test. The audiologist said my hearing loss was not normal and I needed to find out what was causing it. I tried hearing aids but my hearing changes from hour to hour so they didnt work. Also, I have noticed when I eat, my hearing gets better. Anyone experience that? Anyway, the audiologist asked me if i had ever been tested for Lyme Disease. She had experience with it and so I was tested and it came back positive. Thus the large amounts of antibiotics, but I did find out from that experience that I do have hearing under all this fullness and constant PT. I also have this weird thing that happens whenever I lay my left ear on a pillow. My left ear does this suction thing to the pillow, like a toilet plunger does to unplug a drain. Its like stuck to the pillow. Anyone experience this? Also when I get up, bend over or the air conditioner comes on, my ears start really pounding for a few seconds like blood is rushing to my ears. Sorry this is so long, its just been years of no answers.
       
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    7. 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, Lyndy,

      I'm so sorry you've been experiencing all these symptoms for so long! It sounds like you've finally gotten some answers since you tested positive for Lyme disease. What is the prognosis for that? Will you be on a course of strong antibiotics for a certain period of time?

      I have pulsatile tinnitus, too, but haven't experienced symptoms like yours -- except for the feelings of fullness. Let's hope that the antibiotics will do the job for you, and that you'll begin to have better hearing again.

      Good luck, and glad you've joined us!

      Best wishes,
      Karen
       
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    8. Cathrine

      Cathrine Member

      Location:
      Germany
      Tinnitus Since:
      3/ 2014
      Dear Karen,
      I have been watching the PT threads for 6 months now. This was the time when my PT started It was a week after a whiplash-injury and it is devastating. I tried everything to get rid of it. Nothing really helped. So I tried to get used to it but I do not manage. It is terrible and I think I cannot go on this way. I feel I cannot live with it. It is an eternal hissing 24/7. Very rarely it is a bit milder. But there is still another tinnitus, high pitch, like a jigsaw. That is also hard to stand, but I manage better.
      I'm addressing you (and appreciate all other comments and maybe help), because I feel that you get along with your situation. My question is: How did you manage - or are you still coping? I wish so desperately to hear from someone, that I could manage it, too. At this very moment I feel like being in the hell. My life isn't what it was before, I am on "Benzos", because I'm in a deep depression and anxiety. I even stayed some weeks in a psychosomatic tinnitus hospital, where they tried to help me.
      I am losing my hopes and the rest of my life from day to day. May I ask another question?: Is it really true, that is more difficult to get used to a PT than to other tones? (I even read it could be impossible.)
      All the best for you,
      Catherine
       
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    9. 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, Catherine,

      I've just read your post, and I'm so sorry you are suffering with PT, and totally sympathize with you. Yes, PT can be very difficult to deal with, and also very difficult to habituate to.

      Some questions for you:
      Have you been checked out by a doctor for your whiplash, and was he able to offer any suggestions about the PT? Have you suffered any sort of neck injury? And --- have you had any tests (CT scan, MRI) of your head and neck area? What type of doctor(s) have you seen so far?

      I've had PT for the last four years, and I am learning how to cope with it. I have had the following tests to date: CT scan, MRI/MRA, and Doppler of carotid arteries. Nothing was found. One doctor I went to suggested having a CT scan with contrast, and I have not done that yet, due to radiation. I thought I'd try to cope with it for awhile, to see if things got better, before going for another round of tests.

      Here's what I've been doing to cope: I take magnesium chloride tablets about an hour before bedtime, and it helps me sleep. I used to have shaking and vibrations in my entire body when the PT first started, but that has gone away now. I believe the magnesium really helped a lot with that! Also, I have been trying to follow a healthy diet, exercising, and keeping my blood pressure as low as possible. I was taking blood pressure drugs, but now I use natural supplements, including fish oil and ubiquinol, to control it. That has helped the PT stay a lot calmer! I believe that diet can play a role in it, too. Try to watch your sodium and sugar intake, and see if that makes any difference. I've been trying to make sure I get enough sleep, and try to stay active and keep my mind distracted as much as possible.

      You might be interested in joining Whooshers.com, which is a closed group on Facebook. There, you can find suggestions from other PT sufferers, and lots of great information. On Whooshers.com, they suggest you keep copies of your tests, and circulate them to other doctors.

      I hope this information is helpful to you, and I also hope you'll keep in touch with me to let me know how you're doing. Please don't ever give up; things will get better!

      Best wishes and hugs,
      Karen
       
    10. Cathrine

      Cathrine Member

      Location:
      Germany
      Tinnitus Since:
      3/ 2014
      Dear Karen,
      thank you for your answer! To your questions for me: Yes, I have seen many specialists. Of course, first an orthopedic specialist and an ENT. They sent me to MRT/MRI/CT and Doppler. Up to here everything was OK. Furthermore they required an so-called upright MRT (in function). Here they discovered an atlanto-axial subluxation as a consequence of the car accident. In this early times of my torture they stated, the PT is a result of the accident and should vanish one day. But they were not right! Of course, I am still in regular physiotherapy and have seen two osteophatic specialists. They tried an atlanto-axis-treatment (Arlen). Furthermore I underwent such HCO-Therapie (hyperbare therapy) - useless.
      I think I tried everything which is possible and have to see, that only habituation could help me. BUT HOW TO DO IT??
      I feel - as I wrote in the former post - in hell.
      Thank you for the hint to get member on whooshers, dear Karen. Im going to do it.
      I tried to read behind your words and cannot find out, whether you get along quite well with this situation. Am a approaching you to directly to ask again whether you can live a "normal" life with this devil in the head? And whether you have good moments?
      A big hug for you,
      Catherine
       
    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
      Hi, Catherine,

      It looks as if you've had just about every test and procedure you can have for the whiplash and for the pulsatile tinnitus, if I understand correctly. My CT scan was of the temporal bone, to determine if there is any bone loss in that area that could be causing me to hear the whoosh. Have you had a test like that?

      To answer your question about how I am coping with the pulsatile tinnitus and tinnitus, I would say that I have made a lot of progress. When this first started for me four years ago, my tinnitus was roaring and my pulsating tinnitus sounded like a drumbeat. I couldn't sleep, and when I laid down at night, the pulsating made my whole body feel like it was vibrating. I've come a long way since then!

      I still have a high-pitched hissing tinnitus that is constant, and a pulsating undercurrent. I can hear the hissing/ringing all day. The pulsating I can't hear as much during the day, so it is much improved. I can function pretty much normally again, and do things again. I couldn't read or concentrate on anything when the tinnitus/PT first started, but now I can read and think again! Most nights, I can sleep, as long as I wait until I'm really tired before going to bed. Then, I can tune out the sounds long enough to get to sleep. I am working again, part-time (I'm a retired person, but I returned to work to distract myself from the tinnitus).

      The main thing you can do, if you want to try to habituate to it, is to learn how to distract yourself. This is a process that requires patience, but it can be done. It took me a long time because of the severity of my tinnitus, plus the pulsating tinnitus. The way I did it was to try to structure my days so that I kept myself busy as much as possible. In the evening, I still have trouble watching television, because it makes my tinnitus react, so I read, play games, do crossword puzzles, etc. When my tinnitus is at its worst (every day in the late afternoon), I try to go out and take a walk or do something else active. During the morning and early afternoon, my tinnitus is fairly mild, and I hardly notice it if I'm busy. The key to habituation is to stay busy and distracted all day long!

      I hope I've answered your questions, and want to let you know that things can and will get better. Please come here for moral support. Don't ever give up!!

      Best wishes,
      Karen
       
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    12. Cathrine

      Cathrine Member

      Location:
      Germany
      Tinnitus Since:
      3/ 2014
      Dear Karen,
      you cannot imagine what a great help you are for me. It is really for the first time that I hear (read) someone saying. "Yes, it is going better with me - my PT is not controlling me, I am the master." That is a great evening for me! Thanks!
      All the best for you,
      Catherine
       
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    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
      @Cathrine,

      I'm glad I could help you, and hope you'll stay in touch with us on Tinnitus Talk! I truly hope that things begin to get better for you.

      Best wishes,
      Karen
       
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    14. engineerLA

      engineerLA Member

      Tinnitus Since:
      2014
      Hi Karen - has your T improved? You might want to check out my threads on some solutions to T that I've found.

      You certainly will benefit from getting the Lyme under control (that can take 18 - 24 months of multiple antibiotics plus supplements like the Cowden Protocol etc.).

      Lyme can also create allergies because the immune system can't see the Lyme and starts attacking other things.

      Allergies are very likely contributing to your T. Do check out my threads and see if the help you.
       
    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
      Hi, Engineer,

      I'm not the one with the Lyme disease. That person's name is Lyndy. I'm sure Lyme disease can cause a lot of strange side effects, including severe tinnitus. I hope Lyndy is now on a course of antibiotics, and that she is seeing some results by now.

      As for me, I still have both tinnitus and pulsatile tinnitus, and still haven't found the cause. My doctor just prescribed a Doppler of the carotid arteries, and I'm awaiting the results of that test. In the meantime, I'm living with my PT and learning to ignore it as much as I can.

      Thanks for the information!
       
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    16. ruben ruiz

      ruben ruiz Member

      Location:
      Tucson, AZ
      Tinnitus Since:
      2012
      Cause of Tinnitus:
      I believe it was meds and stress
      I thought antibiotics caused T and H? Here Im reading that they help relieve T and H. Does anyone have input? Thank you.
       
    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
      I think that, on this thread, the antibiotics being referred to were prescribed to the person who has Lyme disease. However, for some people, some antibiotics are ototoxic. It depends on the individual, as well as the antibiotic.
       

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