8 Long Years With Pulsatile Tinnitus

Discussion in 'Support' started by mynamewastaken, Feb 25, 2014.

tinnitus forum
    1. mynamewastaken
      Angelic

      mynamewastaken Member

      Tinnitus Since:
      2006
      I'm a 34 year old female, and I have had subjective unilateral pulsatile tinnitus since 2006. It came on suddenly one day, and hasn't left since. The sound I hear is similar to that of a pregnant woman's ultrasound exam, and is in perfect sync with my pulse. If I press lightly just below my ear on my carotid artery, the sound disappears while holding. I was 27 years old at the time, and with the exception of mild PCOS and some sinus/allergy issues, I was healthy --- normal blood pressure, no evidence of diabetes or anemia, and of average weight. Within a short period of time though the pulsatile tinnitus was then accompanied by intermittent dizziness, headaches, and nausea. Through it all though, I was still consistently deemed to be "healthy" by my doctor.

      In the years since the sound first started, I've seen half a dozen specialists (ENT, Cardiologist, Neurologists & GI) and had all of the standard testing (MRI with and without contrast, MRA, doppler of corotid arteries, CT of temporal bone, nuclear stress test, endoscopy, and hearing tests) all without finding any cause for my pulsatile tinnitus. I was diagnosed with acid reflux disease and given Protonix to take twice a day, along with Zantac at each meal. Of course, although the nausea did improve, the pulsatile tinnitus did not. The closest I'd gotten to an explanation was from a cardiologist that believed that it was being caused by a benign cardiac arrhythmia I have that causes me to have a slightly increased heart rate, but I was always skeptical of that being the cause.

      The last doctor I saw in trying to get a diagnosis was in July 2008 and he performed an MRA and told me that he didn't find anything, but that I "should be thankful for what it's not". He suggested I try to take a low dose of Effexor XR (an anti-anxiety/anti-depressant medication), because by this point the constant fear of what could possibly be wrong with me had really taken it's toll, and he thought it would help with the pulsatile tinnitus too. At this stage I'd begun to feel as though most doctors didn't even believe that I was actually hearing a noise in my ear at all, I was frustrated and felt defeated, so I took the Effexor XR (lowest dose) and continued to take it for the next 5 years, and it did in fact reduce my anxiety associated with this condition, but didn't touch the pulsatile tinnitus.

      Flash foward to January 2014, I had been Googling "pulsatile tinnitus" and came across the contact information for a neuro specialist on a website for people suffering from this condition. This doctor was a short distance from me (in NYC), so I figured that it would be a quick trip for me to go see him, and that I had nothing to lose. I made an appointment, went to see the doctor, and brought him CD's of all my previous imaging tests for him to review. From the moment I sat down and explained to him what I was hearing, and for the first time in this extremely long & exhausting journey, I was finally sitting in front of a doctor who was not only extremely knowledgeable, compassionate, willing to listen to me, but most importantly had heard of this condition! He assured me that the pulsatile tinnitus wasn't a psychological condition, and he reviewed all my imaging tests with me one by one. As he reviewed my MRA and CT images, he also didn't find anything of interest, but then while reviewing my MRI he suspected that I probably had a stenosis of a vein on my left side, but he couldn't confirm it because of the MRI's low image quality (it had been done in 2006). He then sent me for a high resolution MRI with contrast and a MRA, which I performed last Monday.

      The doctor called with my results two days later, and the good news is that I don't have a tumor, or an aneursym. What he did find though is bilateral stenosis of two veins (one on each side of my head) and that is what is causing the pulsatile tinnitus in my left ear. He recommended that the next step be to schedule a lumbar puncture to check my CSF pressure, as many people diagnosed with this condition also have Idiopathic Intercranial Hypertension. I recently had my vision checked and there was no sign of papilledema, but from my understanding it is possible to have IIH without it, although it is more rare. I'm hopeful I don't have this condition and can move onto deciding what the next step will be. I'm so thankful that after all of these years to have finally gotten a diagnosis, and not left to feel as though it's all a figment of my imagination.
       
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    2. Miss lavender

      Miss lavender Member

      Location:
      Australia
      Tinnitus Since:
      04/01/2011
      Cause of Tinnitus:
      Virus
      Good on you for perusing this further. Hope it resolves many issues for you. Good luck.
       
    3. James
      No Mood

      James Member Benefactor

      Location:
      California
      Tinnitus Since:
      Pulsing 03/2013
      Wow, I'm happy for you. Maybe one person can beat this. What I'm afraid of is, its only a diagnosis. I wish you luck and that your doctor cures you. How wonderful.

      I have subjective bi-lateral pulsing tinnitus, both ears. I don't have the light pressure on the carotid artery thing, and it stops pulsing. I can't even find my artery. I figure mine is nerve damage due to old age, or that hypertension, hell I don't know and my ENT told me there's no cure.

      I hope your future life will be T-free and you sleep well have sweet dreams. Let us know how it goes.
       
      • Hug Hug x 1
    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
      Wonderful news! I'm sure it's great to finally be taken seriously about your pulsatile tinnitus, and to actually get a diagnosis after all this time. I also hope that your doctor is able to cure the stenosis so that you will be PT-free.
      Is your doctor by any chance a Dr. Shapiro? I've heard great things about him from others with PT, and wish I lived closer to NYC.

      I have had unilateral pulsatile tinnitus since 2010. It started suddenly, and I've had a lot of tests and been to a lot of doctors, too. So far, no one has been able to find anything.

      I wish you success, and hope you'll let us know what the results of your lumbar puncture and final diagnosis are. Best of luck, and best wishes for a cure!
       
      • Like Like x 1
    5. Mark McDill
      Curious

      Mark McDill Member Benefactor

      Location:
      Papillion, NE
      Tinnitus Since:
      03/2013
      Cause of Tinnitus:
      Likely stress, anxiety, an antibiotic and nsaids

      I experience pulsatile tinnitus at night (especially during times of high anxiety/stress); although I'm sure mine isn't nearly as severe as yours. Since my T bothers me a lot more, I don't worry too much about pulsatile (I can usually calm down and it goes away).

      I am interested in more info about it; especially since it can sometimes get my T started.

      Mark
       
    6. 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, Mark,

      Pulsatile tinnitus can be caused by many factors, so it's hard to pinpoint exactly why it occurs. It is considered to be vascular in nature most of the time. However, as mynamewastaken mentioned above, sometimes a specific cause can be identified, and then it can be cured (often) by surgery. There are many people who have pulsatile tinnitus as a result of IIH (intracranial hypertension), which is caused by excess fluid around the brain. Those people often experience relief after they have a lumbar puncture to drain the fluid. Others of us never find out what is causing ours, and just learn to live with it.

      There is a lot of information about pulsatile tinnitus at the Whooshers.com website. There, you'll find information on possible causes of PT, and a list of "cured whooshers". There is a lot of information on PT on the internet, and you might try Googling it to read some of the scholarly articles.

      Since yours is mild, it may be possible for you to live with it, and it could eventually disappear on its own. For some of us, it is a lot more bothersome. Mine has calmed down quite a bit, but it has taken almost four years to get to this point!

      Hope this information helps!
       
      • Like Like x 2
    7. mynamewastaken
      Angelic

      mynamewastaken Member

      Tinnitus Since:
      2006
      Thank you everyone! I feel like finally having a diagnosis and a cause identified for my pulsatile tinnitus eases my daily anxieties in a tremendous way. I've lived for years worrying that I had a blood clot, and could have a stroke at any moment. Not in all cases, but in mine I not only hear my heartbeat, but I also feel it in my head as well; as a pulsation. The pulsation sensation increases with any type of exertion. I may never be cured of this, but now having a doctor who takes my symptoms seriously is a huge relief. The reason that I started trying to identify the cause again is because my husband and I are planning for pregnancy, and being that I have normal (even low sometimes) blood pressure, I'd been told by my OBGYN that there was a possibility that the pulsatile tinnitus would get worse with the normal increased blood volume, hormones and blood pressure elevation associated with being pregnant. It makes me really nervous, since I already have a hard time right now dealing with the sound in it's current form.

      Yes Karen, my doctor is Dr. Maxim Shapiro at NYU. I found him via the wooshers.com website that you posted above. As you noted, many people with PT have reached out to him. He's been excellent with me so far, and I just went to see him for the first time a few weeks ago. My lumbar puncture is scheduled for tomorrow, so I will update you with the findings.

      Have you read this article before? http://www.dailymail.co.uk/health/a...emailing-expert-3-000-miles-away-America.html
       
    8. mynamewastaken
      Angelic

      mynamewastaken Member

      Tinnitus Since:
      2006
      Sorry, correction - his name is Maksim, not Maxim.
       
    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
      I'm glad you were able to see Dr. Shapiro, and that he was able to help you. Thanks for posting the article!

      I wish you well with the lumbar puncture, and will be interested to hear how things went.
       
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    10. beemovie

      beemovie Member

      Location:
      USA
      Tinnitus Since:
      Nov 2013

      Just wondering if you ever took Xanax or some other benzodiazepine medication? And if so, if did anything?
       
    11. mynamewastaken
      Angelic

      mynamewastaken Member

      Tinnitus Since:
      2006
      No beemovie, I have never taken Xanax or any other benzo. My anxiety was pretty well managed with 75mg of Effexor XR, but I have been off of it several times over the years. I just started taking it again in February 2014, but hadn't needed to be on it for almost a year. There is someone on another tinnitus message board (her handle is "Lucy Lane", and she said that her pulsatile tinnitus is gone 90% of the time now that she is taking Klonopin and Effexor, but I suppose since my cause is vascular in nature, I never had any relief.
       
    12. mynamewastaken
      Angelic

      mynamewastaken Member

      Tinnitus Since:
      2006
      Thanks Karen, I found these studies to be really interesting too:
      http://www.hindawi.com/crim/otolaryngology/2012/814696/
       
      • Helpful Helpful x 1
    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
      Thanks for this information, too! It looks as if a lot of cases of PT, especially in women, it seems, could be attributed to IIH. It would be wonderful if the lumbar puncture totally relieves your symptoms. Good luck!

      If so, this may make me rethink going back to doctors for a diagnosis. I gave up on them after having all those tests and seeing all those doctors a couple years ago. I've had PT for almost 4 years now, and I had been hoping it would subside over time. It does seem somewhat better, but it is definitely still there.

      Thanks, and please keep me posted on your progress!!

      Very best wishes,
      Karen
       
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    14. mynamewastaken
      Angelic

      mynamewastaken Member

      Tinnitus Since:
      2006
      Hi Karen,

      I had my lumbar puncture this morning, and my opening pressure was 25. Dr. Shapiro removed 20cc's of CSF fluid, as he felt that it was high and an IIH diagnosis, but unfortunately the pulsatile tinnitus did not subside once I got up. The information I've found regarding what a "normal" opening pressure is isn't entirely clear, some doctors believe anything above 20 is considered an IIH diagnosis, while others believe it is anything above 25. In my case, since I do have vein stenosis, it's hard to say which came first - the increased pressure caused by the stenosis or the narrowing caused by the increased pressure. If I do in fact have IIH, I do not have a typical case of it at this time. I'm going to follow up with the doctor tomorrow, but pregnancy is a real concern to me as many women do experience increased symptoms with hormonal shifts. The lumbar puncture wasn't as bad as I had anticipated it would be, and the doctor made me feel really relaxed by speaking to me throughout the procedure. They sent me home with great information to reduce the possibility of a low pressure headache, so far so good.
       
    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
      @mynamewastaken,

      I'm glad to hear that your procedure has been done, and that you're doing OK. It's too bad the pulsating did not go away after it was completed. It really does sound as if Dr. Shapiro has an excellent manner with his patients.

      I can certainly understand your concerns about becoming pregnant while having this condition, because it's possible that your symptoms could worsen during the pregnancy.

      Thanks for the update, and I hope Dr. Shapiro is able to give you more information tomorrow.
       
    16. billy43
      Lucky

      billy43 Member

      Location:
      nj usa
      Tinnitus Since:
      9/28/13
      I have pulsatile tinnitus the past 5 months.mine also increases in loudness with any exersion and is subjective and bilateral.ive had multiple tests and seen multiple doctors with no luck so far.i have also seen dr. Shapiro and will say he was by far the best doctor out of all them.he spends alot of time with you,and listens to what you have to say.he also suggested I go for a cerebral angiogram but im scared of such an invasive test and nyu hospital is far from where I live.
       
    17. mynamewastaken
      Angelic

      mynamewastaken Member

      Tinnitus Since:
      2006
      Hi Billy,

      I'm really sorry to hear that you have this condition too, and haven't been given any answers yet. Do you have any other symptoms along with the pulsatile tinnitus, or any conditions such as high blood pressure? I found Dr. Shapiro to be very thorough and attentive as well, and I can see why you would be hesitant to have a cerebral angiogram done. Did you bring him all your previous testing CD's for him to review?
       
    18. billy43
      Lucky

      billy43 Member

      Location:
      nj usa
      Tinnitus Since:
      9/28/13
      yes.I had mri with contrast mra ,ct of the temporal bone and ct angiogram of the neck. all neg.dr Shapiro looked over all my scans while I was in his office.he was the only doctor who reviewed my scans.unfortunately he didn't see anything unusual.but he still suggested the cerebral angiagram to cover all bases.i kind of want to go for the test but so far cant find a doctor in nj who will give the ok and order the test.i iknow the test has risks and is a long shot to find the caus of my PT.but it really sucks dealing with this so im gonna keep trying.
       
    19. billy43
      Lucky

      billy43 Member

      Location:
      nj usa
      Tinnitus Since:
      9/28/13
      by the way my blood press is borderline high.but all the other doctors felt is wasn't the caus.i also had a pretty bad concussion 60 days prior to my onset of PT.but again most of the doctors felt they weren't connected due to the 2 months seperaration between the concussion and the onset of PT.
       
    20. mynamewastaken
      Angelic

      mynamewastaken Member

      Tinnitus Since:
      2006
      UPDATE: So I went to see Dr. Shapiro again last Monday. He said that he is willing to stent my transverse sinus stenosis, with the understanding that it's to eliminate the pulsatile tinnitus noise I hear only. He doesn't want to make any promise that the CSF pressure will also be lowered if the narrowing is eliminated, although in many cases to date, it has been. I appreciate his honesty and his realistic approach in the treatment expectation though. He recommended that I move ahead with pregnancy plans first, before seeking this treatment. The follow up for stent placement is approximately one full year on two anticoagulant medications, which aren't compatible for use in pregnancy.
       
    21. billy43
      Lucky

      billy43 Member

      Location:
      nj usa
      Tinnitus Since:
      9/28/13
      wow.just read your update.it really seems Dr Shapiro is one of the few doctors who will exhaust all options in an effort to find a cure of the PT in his patients.he was the only doctor I saw who recommended a cerebral angiogram test to me.did he give you an opinion on how certain he was that your stent surgery would eliminate your PT.and how much risk would be involved with such a surgery.ok hope to hear back from you. thanks billy43
       
    22. Laura89
      Tired

      Laura89 Member

      Location:
      Calgary, Canada
      Tinnitus Since:
      Feb 14, 2014
      Hey mynamewastaken, I was wondering how are you doing these days?

      I also spoke to Dr. Shapiro recently, he is a very nice gentleman and agreed to review my MRI and CTA. I will be sending my scans in the next days and then he said he will call me and talk about it. I will report back with what he says.

      I am ask supposed to see an ENT in June and a neuro at some point though I feel the neuro appointment will take longer to happen.

      These days my symptoms are: bilateral PT and sometimes I feel like my head is throbbing, I don't have headaches, nausea, or optic nerve swelling. Though in the past months my eye floaters have increased, its probs not related...
       
    23. 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, Laura,

      I'll be interested to hear what Dr. Shapiro has to say about your MRI and CTA test results. It does sound like he is a caring doctor who actually tries to find a cause for your PT. It must be really awful having bilateral PT; I can imaging that you would feel like your entire head was throbbing. (Mine is unilateral, and that's bad enough!)

      Good luck, and hope to hear more from you soon!
       
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    24. Laura89
      Tired

      Laura89 Member

      Location:
      Calgary, Canada
      Tinnitus Since:
      Feb 14, 2014
      oh damn, sorry I have unilateral!!! Sorry about that!!! (english is not my first language). Right ear only!

      But I will let you know what he says soon here, probs in the first week of May. :) keep me in your thoughts, I hope he sees something that can send me to the right direction.
       
      • Like Like x 1
    25. Aneta
      Supportive

      Aneta Member

      Tinnitus Since:
      2006
      Hello everyone, I too have been suffering with PT for nine years. I'm 36 and I have always been in great health with no issues. I had an intense on on set nice years ago, along with common tinnitus, vertigo, and headache. Back then I had a CT scan and MRI without contrast, and the MRI showed I evidently had minor stenosis in anterior cerebral artery, but with good distal filling, so apparently it is not the cause as they believe that is from birth. I went to ear specialists, neurologists and everything has been negative. My symptoms improved so that I could cope in daily life, but a few days ago it came back with avenges, so I went to a urgent clinic yesterday and they did a MRI of the brain and IAC and everything was completely normal. They also looked at me like I am crazy when I told them my symptoms and on my chart it says I cam in with right war pain!! I just found a doctor recommendation on whooshers, so I will contact his office on Monday. Anyway, I'm just so glad that there is support out there, sometimes I feel like I'm the only one suffering as no one around me understands how annoying it is and the nerves of not knowing what causes it and the potential scary things that can. @mynamewastaken, how are things going for you? I just want to let you know that of course I don't know what I have yet and how it compares to yours, but I had a normal uncomplicated pregnancy and birth five years ago.. So I hope and believe that it will turn out that way for you as well, as my blood pressure was also always on the low side.. Good luck!
       
    26. Heather82

      Heather82 Member

      Tinnitus Since:
      01/97
      Other than putting pressure right below the ear have you found anything else that helps? I have had this about 8 yrs as well. Reading your story I was amazed that it is so close to my story. Including the acid reflux meds you are taking. If you have any advice I would greatly appreciate it. Thank you for posting this, I always felt like I was alone in this and that I was going crazy. So thank you thank you thank you.
       
    27. 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, Heather,

      You're not going crazy. Pulsatile tinnitus is a very real condition, and if a cause can be found, it can be treatable, too.
      Mine is unilateral, and I've had a number of tests, all with negative results. I've had PT for over 5 years, along with T.

      For me, the only thing that works is distraction, staying calm and busy, and taking magnesium regularly. It has seemed to help me with sleep, and with keeping my head from feeling like it is vibrating so much.

      What types of tests have you had, and what have your doctors had to say about your condition?

      It's not easy to cope with, and only those of us who have this condition understand what it's like to live with it on a daily basis!!!

      Hugs and best wishes,
      Karen
       
      • Agree Agree x 1
    28. Heather82

      Heather82 Member

      Tinnitus Since:
      01/97
      Karen,
      At first my Dr couldn't figure out what it was, but I finally got diagnosed with PT. Then I lost my health insurance and haven't been able to go to a specialist to get any test done. I am currently trying to get new health insurance so I can get treatment. I am definitely going to try taking magnesium and see if it helps any. Thank you for replying and giving me insight into this condition.
      Thank you,
      Heather
       
    29. 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
      You're welcome, Heather!

      I'm in a similar situation; I'm now on a Medicare advantage plan, and they don't have any specialists on my plan who can diagnose this condition.

      I hope you're able to get on a new plan, and get some answers. In the meantime, I hope the magnesium helps you.

      Take care, and keep me posted on your progress!

      Karen
       
    30. wishingluck
      No Mood

      wishingluck Member Benefactor

      Tinnitus Since:
      2015
      Cause of Tinnitus:
      not sure, but probably acoustic trauma
      sorry to hear you spent so long with pulsatile tinnitus, I actually wish I had this myself as I have learned so far, pulsatile tinnitus HAS a clear physiological cause, the 'only' obstacle is finding which one. I can't believe the first doctors you saw, such idiots. I mean seriously, how can doctors be that dumb?

      I think all of us should use google, books, and becoming a member of every tinnitus major association. Let's not stop at what doctors say, because often these people can't get their heads out of a paperbag. I have already read in several papers that many tinnitus cases go underdiagnosed. The only thing we must avoid on the internet, are 'cures' , quacks and snake oil: they are everywhere, they have always been, since time immemorial, those vultures ready to make a quick buck by preying on vulnerable people who are often desperate to try almost anything.

      I wish you all the best and a speedy recovery.
       

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