Beyond Frustrated with Pulsatile Tinnitus

Discussion in 'Support' started by StephDay, Apr 23, 2015.

tinnitus forum
    1. StephDay

      StephDay Member

      Tinnitus Since:
      04/2005
      Hi, my name is Stephanie. I am 33 years old. This is my first time posting. I have had PT since 2005. My PT began with a sinus infection and then bronchitis after I was put on an antibiotic. A few weeks later the PT started in my right ear first and over time became apparent in both ears.

      The "wooshing" was at first bearable but has now become so loud that there are times I question whether I can continue living with it. I am a law student and before that a probation officer and have been under a lot of stress for years. I'm sure this exacerbates it. In '05 my dr ordered an MRA and MRI which came up with nothing. At that time I figured I was just going to have to live with the noise. Years later I went to an ENT who didn't really take me seriously. I have had CT scans, taken numerous medications, and had acupuncture. I have been diagnosed with fibromyalgia, migraines, sinus infections, allergies, etc. to explain the condition but none of the treatments for these conditions has worked and I do not believe I have any of these conditions. I do have PCOS and a hiatal hernia but am healthy otherwise. BP is normal, cholesterol is normal, and I am not diabetic. I am overweight (which comes with the PCOS).

      Along with the PT I have depression, anxiety, headaches, nausea, blurry vision, tightness in my neck and shoulders, and fatigue. In fact, I am always tired which is what has caused me to resume trying to find a cure. I did some research and learned that approx 75% of PT sufferers have it due to intracranial hypertension which also causes blurry vision, fatigue, depression, anxiety and stiffness in the neck. I also read that losing 5 to 10% of your body weight can help with the IH and PT but with PCOS comes insulin resistance which makes it very difficult to lose weight. I have an appt Mon. with an ENT who is familiar with the condition and am hoping to get the ball rolling on how to resolve this. It has gotten so bad that I constantly press on my jugular on both sides to get some sort of relief from the noise. I barely sleep at night now because it is all I can hear and I get so frustrated in class because I can't hear the teacher over the noise.

      Any further information, or just some support would be wonderful. Thank you for taking the time to read my story!

      -Stephanie in NC
       
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    2. Danny Boy
      Cheerful

      Danny Boy Member Benefactor Hall of Fame

      Location:
      England
      Tinnitus Since:
      7/2014
      Cause of Tinnitus:
      Ear infection
      Hey, Stephanie! Have you considered trying trobalt? A lot of people on here have had amazing results with it. I don't think anyone with PT has tried it, so it would be lovely if you could try and tell us the effect it has on PT.
       
    3. 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, Stephanie, and welcome to Tinnitus Talk!

      I'm so sorry you're having difficulties with pulsatile tinnitus. Ten years is a long time (way too long!) to have this affliction, and I know you are anxious for some answers. I have pulsatile tinnitus, too, so I know what you're going through. Mine started after taking a blood pressure drug, and all I know is that mine is somehow related to blood pressure.

      Since yours started after the sinus infection and bronchitis, there might be a connection there. I've heard that about intracranial hypertension, too. Did you know that an eye doctor would probably be able to detect that condition if you went for an eye exam? You could try that, to see if he/she noticed anything unusual.

      Have you had any tests for the pulsatile tinnitus, such as an MRI or CT scan? Perhaps you could ask your doctor about it, and see if he would want to order such a test for you.

      I'll be interested to hear what your doctor has to say, and hope you'll report back to let us know. In the meantime, there are several of us here who have PT, and we're always available for support whenever you need us.

      Best wishes,
      Karen
       
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    4. Danny Boy
      Cheerful

      Danny Boy Member Benefactor Hall of Fame

      Location:
      England
      Tinnitus Since:
      7/2014
      Cause of Tinnitus:
      Ear infection
      Karen, do you believe these potassium channel modulators can work for PT? It seems to be helping normal tinnitus.
       
    5. 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, @Danny Boy,

      That's a good question, as to whether Autifony would work for pulsatile tinnitus. In most cases, I would say no (only a guess, however). That's because most cases of pulsatile tinnitus have a vascular cause.

      However, I know that, in my case, I have both tinnitus and pulsatile tinnitus, so I would consider trying it if the trials go well and it becomes readily available. I'd be happy to get rid of one or other (T or PT)!
       
    6. Danny Boy
      Cheerful

      Danny Boy Member Benefactor Hall of Fame

      Location:
      England
      Tinnitus Since:
      7/2014
      Cause of Tinnitus:
      Ear infection
      Hm, I'm just wondering if keppra or trobalt can help with PT, as it's helped others...It just makes me very curious. Anyway, I hope it does work, as isn't PT worse than tinnitus?
       
    7. billy43
      Lucky

      billy43 Member

      Location:
      nj usa
      Tinnitus Since:
      9/28/13
      hi Stephanie.very sorry that your PT seems to be getting worse with time.I also have PT.in my research in some cases the patients who were able to quiet there PT by pressing on their jugular vein were also the lucky few who eventually found a doctor who was able to find a cure for them.usually by some type of surgery.it sounds like you have not had an mri or mra in 10 years.insist on new scans.many times those scans can miss something that can be causing the PT.Do not give up.keep trying until you find a doctor who will take you seriously.many times your better off seeing a neurologist whos familiar with PT instead of an ENT.Good luck and hopefully things improve for you. billy 43
       
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    8. Pilot
      Mellow

      Pilot Member Benefactor

      Location:
      Baltimore, MD
      Tinnitus Since:
      December, 2014
      Cause of Tinnitus:
      Unknown
      Random thought, have you ever been tested for Lyme disease? You have a lot of symptoms, and fibromyalgia has been incorrectly diagnosed at times. I know someone that didn't realize they had it for a long time.

      Lyme disease can cause hearing problems and tinnitus, I don't think it would cause true PT though. I say true PT because true PT vascular, I have a pulsating hiss that I think was caused by a change in my brain.

      I'm sorry you are going through this.
       
    9. tricia_lyn13

      tricia_lyn13 Member

      Tinnitus Since:
      Dec 16 2015
      @Karen how long after you took blood pressure medicine did your PT begin?
       
    10. 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, @tricia_lyn13 ,

      It's hard to remember (that was five years ago), but I think it was within a couple of weeks.

      Do you have pulsatile tinnitus, and if so, how did yours begin?
       
    11. Angeluhh

      Angeluhh Member

      Tinnitus Since:
      06/2006
      Cause of Tinnitus:
      no idea
      @StephDay, I really relate to your woes. I too am 33, have gone back to school, and have been living with PT for a decade or so (in my darker times I think of how I could stop hearing my heart beat if my heart would just. stop. beating). And, like you, I'm diagnosed PCOS, fibromyalgia, migraines, allergies, too many sinus infections, depression, anxiety... whatever it is you "really" have, if there is a single root cause, I think I must have the same thing.
      The intracranial hypertension thing makes me think maybe some good old trepanning could solve my problems but I don't think I'm brave/foolhardy enough to perform it on myself and I highly doubt there are modern medical professionals who would be willing to literally drill a hole in my head.

      You mentioned you'd be seeing a new ENT on Monday. Have you learned anything new from that, or have any new things to try?
       

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