Pulsing Medical Mystery

Discussion in 'Support' started by Candacemiller, Aug 17, 2016.

    1. Candacemiller

      Candacemiller Member

      Tinnitus Since:
      Cause of Tinnitus:

      My PT started with just fullness in my left ear at the end of my pregnancy. It turned into a pulse with in months and became louder and constant 24/7.

      I first saw my local doctor who said my ear looks clear and refered me to an ENT. There I had my 1 st MRI. I was told it came back normal and you will have to live with it. I waited a couple months and couldn't take it anymore. I found that if I turned my head to the left or pressed on the artery the noise would stop.

      I found an otolaryngologist who took me seriously, I had a CT and another MRA/MRI. The only thing they saw was my bone was thinning near the sigmoid sinus but no diverticulum in the vein. They said maybe I have intercranial hypertension and started me on diamox and sent me onto a neuro ophthalmologist and a neurologist.

      The eye doctor told me my optic nerves look good with no swelling. I followed up with the neurologist who told me I could stop the medication he didn't believe I had the IH since I don't have visual problems or optic nerve swelling. He ordered a CT of my neck and head with contrast.

      A month later I returned to find my results were Normal. By this point I now have headaches daily on the left side of my head from the back to the temple along with neck and shoulder pain. He prescribed me propranolol for my headaches and thinks it may be carotidynia. I will follow up in 2 months with him.

      I'm not sure I fit the symptoms of this and I am now stuck. Any advice or support would be great!
    2. Karen

      Karen Manager Staff Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      Cause of Tinnitus:
      First time: Noise 2nd Time: Ototoxic drug
      Hi, Candace,

      I can totally sympathize with what you're going through. I too have pulsatile tinnitus in one ear only (right ear), and have had a lot of tests with no specific answers.

      I've heard of several other women whose tinnitus or pulsating started right after pregnancy. Perhaps it is due to the many changes in your body (hormonal changes and excess fluid) during pregnancy that causes this to occur. But whatever it is, it is certainly bothersome.

      A couple of questions: While you were taking the Diamox, did it help in any way? Did you notice any difference in the level of your pulsating? Were the headaches relieved? I've heard that sometimes people may have IIH even though they don't totally fit the symptoms.

      It might be worthwhile for you to consider sending your scans to another doctor (or doctors) to get another opinion. On Whooshers.com, it is often suggested that a neurointerventional radiologist may be a good specialist to consult. They often have more knowledge about PT and its symptoms, and may be able to see something in your scans that others haven't. Do you live in or near a large city, with a teaching hospital nearby? That might be a good place to find such a specialist. Or -- there are a couple of doctors that are often recommended on Whooshers.com. You can send your scans to them, for a fee, and they will review them and contact you with their findings.

      I hope you are able to find some answers soon, and that you find a doctor (or doctors) who will listen to you, and work with you to find treatment.

      Best wishes,
    3. Theres

      Theres Member

      Tinnitus Since:
      Cause of Tinnitus:
      This sounds very similar to mine (symptoms and test results), except I've never been pregnant. I found that tipping my head and shoulders over the arm of my couch (with my arms dangling to get a nice stretch in the shoulders) makes the noise go away for about 10 minutes. Also, the muscles on the side of my neck where the PT is used to feel soft, very unlike my unaffected side. I'm sure this is any help to you since I don't have an answer for my PT, but if I find one, I'll keep you in mind and let you know. Wishing you the best.
    4. DirM

      DirM Member Benefactor

      San Diego
      Tinnitus Since:
      July 11, 2016
      Cause of Tinnitus:
      My symptoms are similar, but as a guy I have never been pregnant. :)

      I can stop my T temporarily or change the tone by pressing on my neck or sometimes even my face. When I look up it goes up and when I look way down (chin on chest) it almost goes away. I joke that I can play a tune only I can hear by just pressing around areas on my head and neck. My ears and everything come back clear, and my hearing is perfect. Interestingly muscle relaxers (Robaxin) bring it down quite a bit, and heavy alcohol can almost eliminate it completely. Caffeine and stimulants spike it.

      In my case they are treating it as TMJ. The theory is that bad orthodontics and night clinching drove my jaw up into close where the ear is. This is verified by a CT scan. My treatment is bite plates at night, continuation of muscle relaxers, and physical therapy (basically head and neck massages). If this helps, and my T is relieved by the bite plates, they are talking about new otho to reset my mouth, but I won't know this for several months. About 10 days into treatment I *think* there is improvement, but I have good hours and bad hours. But that is an improvement when it first hit, when I had nothing but bad hours.

      This all being said, I am also looking at other causes (allergies, etc.) while I do this therapy since the TMJ is just a theory...but so far I think it is the right track.

      Good luck!

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