If You Have Pulsatile Tinnitus, Here's the First Thing You Need to Do to Get Answers and a Diagnosis

Discussion in 'Support' started by tiniturtle, Sep 22, 2019.

    1. tiniturtle

      tiniturtle Member

      Tinnitus Since:
      3/19/2017
      Cause of Tinnitus:
      Paromomycin
      I've been reading through these threads and there is lots of speculation about what the causes are, guesses, misinformation, etc. A lot of people going in circles. Pulsatile tinnitus is not tinnitus. Pulsatile tinnitus is a rhythmical noise that is synchronous with the patient's heartbeat. Most of the time this can be diagnosed and treated, but an ENT, audiologist, or primary doctor cannot diagnose this or know what to look for. You need to go to a specialist in a city or university hospital.

      You need an MRA, and a radiologist that knows what to look for. MRI and CT are not sufficient. The type of specialist you need to consult with is a neuro-interventional radiologist. Pulsatile tinnitus is caused by a vascular issue most of the time. It isn't always dangerous, but sometimes it is. These types of doctors will usually very easily identify the cause of your PT.

      Why should you listen to me? I went to ENT and audiology first. They said my PT was "just my tinnitus". This led to a long delay in diagnosis. I had an MRA, and it indicated a dural arteriovenous fistula. It was confirmed on follow up cerebral angiogram. If I had not had it treated early, it would have led to an intracranial hemorrhage (a stroke). With minimally invasive treatment, the fistula was cured, and the PT disappeared along with it. I've had this happen to me twice, and I've needed a total of 3 procedures.

      Unlike regular tinnitus, the cause of pulsatile tinnitus can very often be identified and treated. They are not similar and related in any way, and have very different causes and mechanism of action. They should not be lumped together. If you have these symptoms after a head injury, it's even more indicative that you should get this checked out as soon as possible.

      Send me a message if anyone has questions or needs recommendations for a doctor or hospital. I don't want to post them directly in a public thread out of respect.

      Information:

      whooshers.com

      neuroangio.org
       
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    2. AUTHOR
      AUTHOR
      tiniturtle

      tiniturtle Member

      Tinnitus Since:
      3/19/2017
      Cause of Tinnitus:
      Paromomycin
      I hope this is useful to someone.
       
      • Like Like x 1
    3. Ian Mc

      Ian Mc Member

      Tinnitus Since:
      April 2019
      Cause of Tinnitus:
      Unknown Pulsatile Tinnitus
      Hi tiniturtle, can you please tell me what your PT sounded like, how frequent it was etc. I'm scheduled for a contrast MRA in the next week or so, my PT isn't all that bad and generally can only be heard when I'm in bed or in a very very quiet room. Thanks Ian
       
    4. AUTHOR
      AUTHOR
      tiniturtle

      tiniturtle Member

      Tinnitus Since:
      3/19/2017
      Cause of Tinnitus:
      Paromomycin
      I didn't always hear it. Generally the nature of PT is that it changes, sometimes it's very loud, sometimes you don't hear it, sometimes it's faint. It can vary by the positioning of your head, etc. I'm glad you're getting it checked out. My surgeons have told me that the severity of the PT isn't tied to the severity of a potential vascular issue. It can be loud and benign, or faint, or gone, and still be life-threatening. In summary, any time you have PT for more than a few weeks, the cause should be investigated. Let me know how you make out.
       
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    5. Lilah
      Bashful

      Lilah Member Benefactor

      Location:
      USA
      Tinnitus Since:
      12/2018
      Cause of Tinnitus:
      Unknown, Lupus
      Is your PT the whoosh, thump, or high pitch kind? Thanks.
       
    6. AUTHOR
      AUTHOR
      tiniturtle

      tiniturtle Member

      Tinnitus Since:
      3/19/2017
      Cause of Tinnitus:
      Paromomycin
      It's been all of the above, it changed and varied. There was also a low rumble like hearing a car engine running outside. My PT was cured with surgery, but before this I also have general tinnitus caused by a drug. That I still have and probably won't go away, but it's gotten better. They are completely separate.
       
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    7. Lulu187

      Lulu187 Member

      Tinnitus Since:
      1 week ago
      Cause of Tinnitus:
      Unknown
      My T is both continuous ringing which sometimes transforms into low dub dub sounds. Its relieved when I put alot of pressure underneath my ear, which I'm guessing is the posterior articular vein. When I put pressure on this vein it lowers the continuous ringing very much, until I let go then it gos back to normal.

      When I lay down the ringing is at its loudest regardless of wether there is external noise happening or not. Also when I bend down to pick something up my head feels like it's about to explode with blood so i avoid bending over now.

      When I go for a run the noise is lowered very much but when I sit after 10 minutes it's back again. Anybody have this or can give me an indicator of wether this is PT or just T?
       
    8. Greg Sacramento

      Greg Sacramento Member Benefactor Hall of Fame

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
      • Like Like x 1
    9. AUTHOR
      AUTHOR
      tiniturtle

      tiniturtle Member

      Tinnitus Since:
      3/19/2017
      Cause of Tinnitus:
      Paromomycin
      This sounds like PT.
       
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    10. Lulu187

      Lulu187 Member

      Tinnitus Since:
      1 week ago
      Cause of Tinnitus:
      Unknown
      Hey Greg, I had a read and some of her symptoms link with mine except the area that I put the pressure that lowers the ringing is in the area of the posterior auricular vein and artery just directly beneath the earlobe. But you could be onto something, it may be related to the Mastoid Emissary vein. I'm not sure, but I do have an ultrasound coming up for the neck area

      I've yet to hear of anybody that has lowered tinnitus after exercise too, if I could find someone maybe it could give me insight into a cause
       
    11. Lulu187

      Lulu187 Member

      Tinnitus Since:
      1 week ago
      Cause of Tinnitus:
      Unknown
    12. Gwyndion
      Crappy

      Gwyndion Member

      Tinnitus Since:
      09/2019
      Cause of Tinnitus:
      Unknown
      So it does seem like I have it based on the tests I've have done so far (standard ENT tests, bloodwork,...) and how similar it seems to what is described here. Now it might be a silly question but any advice on how to actually get my ENT/GP/... to sign me on for a MRA? They seem to view PT and its possible solutions as worse than the cure so they'd rather me sit out out for a few weeks/months and see how I cope. As I'm sure you can understand that isn't a thrilling concept to me. During the day with sound on it's okay'ish but as soon as I lie down it gets notable louder. ENT claims "but your bedroom" is quiet but can't seem to process that's the same room I spend the rest of the day in and I live alone so no, it really isn't (no traffic noises or the like).
       
    13. Greg Sacramento

      Greg Sacramento Member Benefactor Hall of Fame

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
      • Hug Hug x 1
    14. Gwyndion
      Crappy

      Gwyndion Member

      Tinnitus Since:
      09/2019
      Cause of Tinnitus:
      Unknown
      I live in Belgium so the healthcare is quite good and I do have insurance so the main issue is getting the right appointments....for which I need their cooperation as they need to agree the scans are beneficial....
       
    15. AUTHOR
      AUTHOR
      tiniturtle

      tiniturtle Member

      Tinnitus Since:
      3/19/2017
      Cause of Tinnitus:
      Paromomycin
      You'll have to go to a different doctor. As I stated in my original post. Where I live, the standard protocol is if you have PT for over a month, you get sent for an MRA. Most ENT and GP are not familiar at all with PT, it's causes, and how to diagnose it. You should see an interventional radiologist. Or, at least push your current doctors to have an MRA performed. A carotid ultrasound is very specific and will miss the vast majority of these causes.
       
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    16. Gwyndion
      Crappy

      Gwyndion Member

      Tinnitus Since:
      09/2019
      Cause of Tinnitus:
      Unknown
      Thank you, will try to be more insistent then. Just irks me that they seem to think tinnitus is just "learn to live with it" or "yes tests are possible but the cure might be worse than the PT" as I'd love to at least know the underlying cause and then make an informed choice which I feel I'm being denied.
       
    17. AUTHOR
      AUTHOR
      tiniturtle

      tiniturtle Member

      Tinnitus Since:
      3/19/2017
      Cause of Tinnitus:
      Paromomycin
      The issue is that PT can indicate a very serious condition. PT is most often a symptom, not a disease in and of itself. In my case, in my original post, I mentioned that mine indicated a life threatening issue, and my symptoms were relatively minor. I can tell you from experience, the cure is not worse than the PT. If you go to the right, experienced doctor; and if you were to need surgery, it's minimally invasive and the recovery period is relatively fast, and you go back to normal life, and it will cure the PT.
       
    18. GJSCAR

      GJSCAR Member

      Tinnitus Since:
      9/2017
      Cause of Tinnitus:
      Unknown
      Tiniturtle, thank you for your post. I’ve had all of it: CATA, MRI, MRA and the grand daddy of all, cerebral angiogram. All came back normal. Arteries, veins, every thing normal. Blood pressure is normal. Still I have PT. I’ve had MRAs like every 6 months for two years. No change. I’ve seen ENTs, neurologists, intervention medical doctors, vascular specialists all at multiple teaching hospitals. Sometimes there just isn’t a cause I guess and I just have the symptoms.
       
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    19. AUTHOR
      AUTHOR
      tiniturtle

      tiniturtle Member

      Tinnitus Since:
      3/19/2017
      Cause of Tinnitus:
      Paromomycin
      Hey, look at this as a positive. You're safe. To date I've had 3 cerebral angiograms, 3 endovascular embolization surgeries, one pulmonary embolism, one cerebral venous sinus thrombosis, to treat 2 different dural arterivenous fistulas. I have quite a lot of platinum coils, onyx, and titanium nickel stents in my head. Numerous CTs, and MRs. And I still need to go back for one more follow up cerebral angiogram. Consider yourself lucky.
       
    20. GJSCAR

      GJSCAR Member

      Tinnitus Since:
      9/2017
      Cause of Tinnitus:
      Unknown
      I’m sorry if I didn’t see it in your post but I thought you didn’t have a diagnosis. So very very sorry you are going through all that. I will never have another cerebral angiogram because during the threading of the catheter there was plaque was scraped from my aorta and I had what’s called a plaque burst and it went to the right side of my brain. Left me with minor damages. So after that I just got MRAs. Good luck to you. I really hate PT!
       
    21. AUTHOR
      AUTHOR
      tiniturtle

      tiniturtle Member

      Tinnitus Since:
      3/19/2017
      Cause of Tinnitus:
      Paromomycin
      I had a diagnosis and a cure. In my case, PT was just a symptom of something much worse. That's why I'm suggesting that people don't sit and wait, and guess and speculate here about why they are experiencing it. They need to get a proper diagnosis first.
       
    22. AUTHOR
      AUTHOR
      tiniturtle

      tiniturtle Member

      Tinnitus Since:
      3/19/2017
      Cause of Tinnitus:
      Paromomycin
    23. Allan Mcmillan

      Allan Mcmillan Member

      Tinnitus Since:
      April 30 2019
      Cause of Tinnitus:
      Acoustic shock from playing guitar with headphones
      Would you say it's curable 80% of the time?
       
    24. AUTHOR
      AUTHOR
      tiniturtle

      tiniturtle Member

      Tinnitus Since:
      3/19/2017
      Cause of Tinnitus:
      Paromomycin
      If it's of vascular origin, from what I know, and the doctors who have treated me, the vast majority of cases are. The primary problem is with people getting misdiagnosed, or undiagnosed. And relying on ENT, audiology, and Primary doctors. My Primary doctor, in all her training and experience had never heard of the issue that was easily diagnosed and treated by a neuro interventional radiologist. I would say the vast majority of people with PT do not get treated or diagnosed and live with it, or keep making guesses at what it can be. Or worse, do not get diagnosed until they have a stroke or intracranial bleed from a blood vessel rupture.
       
    25. Greg Sacramento

      Greg Sacramento Member Benefactor Hall of Fame

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
      @Allan Mcmillan The approach to getting a proper diagnosis and treatment may depend upon your healthcare system and insurance approval system. This has slowed down many with PT especially when they don't understand causes other than maybe a blood flow problem.

      Many different types of tests my be needed. A neuro interventional radiologist is worth gold. Blood work is also needed. Many doctor offices have radiological services such as X Rays, ultrasounds and EKG, but often more tests are needed.

      There's many reasons why someone may have PT. It can be caused quickly from such as with intercranial hypertension or physical injury to places like within the neck, thyroid or both.

      I was able to diagnosis my cause, but needed tests to confirm. My vertebral artery was injured from hyperextension of neck where muscle spasms straighten my c spine, but this wasn't the cause of my PT. Later, I received too much radiation from multiple CTs for neck, facial and mouth. This caused a thyroid problem and that lead to narrowing of my bilateral extracranial carotid. Since then mild plaque has formed. My cholesterol and triglyceride levels are now higher. After lots of radiation exposure it often takes 30 days before PT will develop.

      I'm not a doctor, but have medical education in anatomy and physiology which requires some knowledge of radiology. I have seen a lot working in trauma hospitals. Any real value that I may had received is from private online research and viewing radiological case studies. Doctors don't understand everything not within their practice. Many generalists don't have the time to keep up to date on research. It's also hard to get doctors to change their ways. One with tinnitus, more so physical tinnitus or PT needs to try to get their GP and healthcare system to request detail study.

      Just one of many articles that discusses my cause. https://www.ncbi.nlm.nih.gov/pubmed/7816447
      "Severe congenital hypothyroidism can cause central vestibular disorders affecting the cerebellum, whereas mild hypothyroidism may result in peripheral vestibulopathy. Metabolic evaluations ... should include a lipoprotein profile, with cholesterol and triglyceride levels, glucose tolerance test, and thyroid hormone measurements."

      I hope that everyone here, has success.
       
    26. Greg Sacramento

      Greg Sacramento Member Benefactor Hall of Fame

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
      PT can be caused from many things. It can associate to neck, thyroid, brain, heart, facial/oral, eyes, ears, temporal bone that houses the ear. Combinations of circulatory system disorders are also possible. One thing can lead/cause another as with physical tinnitus or tinnitus from hearing loss causes.

      What is important is have good radiological techs and radiologists Neuro radiologists for some concerns, but other types of radiologists such as an oral maxillofacial radiologist may be needed.
       
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    27. Halsy

      Halsy Member

      Location:
      Toronto
      Tinnitus Since:
      Sept. 2017
      Cause of Tinnitus:
      Abscess tooth
      If you have SSCD than you'll definitely need a CT to identify that and you'll want to see a neurotologist. That's the first thing I'd recommend people look at for PT as it's much easier to identify, or at least rule out. Finding PT related to venous related conditions is unfortunately like looking for a specific needle in a stack of needles. Always eliminate the easy stuff first.
       
    28. AUTHOR
      AUTHOR
      tiniturtle

      tiniturtle Member

      Tinnitus Since:
      3/19/2017
      Cause of Tinnitus:
      Paromomycin
      It is relatively simple. The problem is most doctors don't order the right imaging studies or know which ones to order. If an MRA will usually indicate something, if it doesn't, MRV almost always does, if it's venous.
       
    29. Gwyndion
      Crappy

      Gwyndion Member

      Tinnitus Since:
      09/2019
      Cause of Tinnitus:
      Unknown
      Thanks for this topic, it has given me some hope. Been struggling with what is probably PT for month and a half (mornings are hell) but so far GP and ENT have been very reluctant to have MRI/MA etc done...Will try and push for one...
       
    30. AUTHOR
      AUTHOR
      tiniturtle

      tiniturtle Member

      Tinnitus Since:
      3/19/2017
      Cause of Tinnitus:
      Paromomycin

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