New Member with Pulsatile Tinnitus

Discussion in 'Support' started by Sunnyjoy, May 20, 2013.

tinnitus forum
    1. Sunnyjoy
      Inspired

      Sunnyjoy Member

      Location:
      washington dc metro area
      Tinnitus Since:
      08/2012
      Hello, everyone. I'm grateful to find similar folks here with experiences I can learn from, because this sound of a loud drummer in my head marching to the rhythm of my heartbeat is really scary. Being here sort of feels like there's someone to hold your hand, I guess. And the information is very rich. I've learned more here than from the doctors I've seen so far.

      This is just assuming I actually have Pulsatile Tinnitis. I've had very loud buzzing tinnitis for years because of having earphones in my ears all day doing transcribing work, and I could live with that, but this additional pulsating banging is hugely bigger. It seems to fill my head, not just my ears. So I think that's probably it.

      I'm just beginning this investigation, since specialists haven't been helpful outside their specialty .. cardiologist, neurologist -- and I'm not sure who to see next. I suppose I'll seek out a neurotologist next - (I think I saw that recommended on this site) - because my terrifying symptom is the loud drumming/roaring/banging/heartbeat sound I HEAR in my head. And sometimes there's a clanging or "metallic" sound, when it's loudest. Just the sort of thing you're all describing, or that I also saw on the "whooshers" website.

      This started six months ago as something that would happen occasionally shortly after I fell asleep. I would be waked by the loud banging/drumming noise in my head/ears several times a week. I would wake up and lie on my back, and it would quiet down in a few minutes and I would go back to sleep for the rest of the night. Then it increased to several times a night on several nights, and my doctor had me monitor my blood pressure. One night when it had wakened me three times in a row, my systolic was 160, so needless to say, I headed straight to my doctor. I was terrified by that number.

      That's how I got diagnosed with high blood pressure and am now prescribed a calcium channel blocker. I'm 10 days into that, so it hasn't been evaluated yet. When the drumming starts, my top number can go up to 145, but other times it's 118 or 125, which is what my top number used to average before this started.

      Today for the first time, this has happened while I'm awake, so whatever this is is escalating. I can hear it as I'm typing this. When it was only at night, my doctor said it was natural for BP to speed up shortly before morning, but she never seemed to take it in when I explain that it happens about 30 minutes or less after I fall asleep, even if it's only 11 p.m.

      The neurologist did a brain MRI, MRA, arteries, veins, carotid MRI, ear canal MRI, all with contrast. (I had had vertigo at first, but that was fixed with one acupuncture treatment.) Everything was "normal" on the MRI, but I got a CD copy of the MRIs so I can show others.

      The cardiologist was horrible. He told me to increase the BP medication dosage and come back in six weeks! When I said, aren't you going to do an examination?" his answer was that all he needed to know was the BP numbers, and his assistant had taken my BP. (He had done other types complete exams a year ago, but before this started.) I told him there was 15 points difference between the two arms, he said she only wrote down the one side. I was appalled and will never ever go there again.

      Because of the sleep connection, next week I'm having a two-hour consultation with a sleep expert who founded and runs a sleep lab. I scheduled that in hopes that she'd seen lots of different problems. The other two doctors are just treating it as a high blood pressure problem.

      I'm very worried about going to bed tonight. Last night when I went to sleep and was wakened by it, I waited till it quieted and then went back to sleep, and this happened four times in one night. Finally I just went outside for a walk. I'll try to do the same thing tonight, but sooner. I also experimented with falling asleep sitting up in bed leaning against a big soft cushion along the wall, comfortable enough, but it didn't stop the drumming from coming after I fell asleep sitting up. It's a serious problem to be exhausted at my job, which is already demanding and stressful.

      Of course I'm concerned about the hypertension I apparently now have and I'll change my lifestyle to get over it, but this banging in my head has got to be indicative of something additional. It's quite scary, as I guess everyone here already knows. I'm grateful for any thoughts anyone has, similar stories, suggestions. A big question I'm dealing with is how do I find someone knowledgeable and thorough and smart and patient enough to find the cause?

      A friend is suggesting it's a panic attack. I occasionally take the lowest dose of Ativan, but not on a regular basis .. my doctor calls it a "rescue" use only .. and the Ativan helps me relax but doesn't stop the pounding from eventually starting. I avoid drugs in general because they scare me, and I see there are others here who want to avoid them as well. My doctor wants me to take Cymbalta to help with anxiety and maybe depression, but I haven't chosen to do that yet. I guess I would if I got scared enough and couldn't bear the feeling.

      I've only read a few of your "my stories" here, so I'm going to read more now. Thank you all so so much for sharing your experiences.
       
    2. 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, Sunnyjoy, and welcome!

      I've just read your post, and your situation sounds similar to mine. A question: Is yours in one ear, or both? Mine is in my right ear only. If yours is in both, I can only imagine what that must be like to hear the drumbeat sound on both sides simultaneously! I used to have only ringing tinnitus (right ear), and this pulsating has added a new, unpleasant dimension to it all.

      I have had pulsatile tinnitus for 3 years now, and have had MRI/MRA with contrast, CT scan (without contrast), and carotid Doppler. All tests came out clean, just like yours. I also have copies of my tests on CD, to show other doctors.

      Mine started after I went to my regular doctor 3 years ago for a standard thyroid blood test. While I was there, the doctor checked my blood pressure several times, and said it was way too high. She insisted that I start on blood pressure medicine to control it, and gave me a prescription for an ACE inhibitor. I put off taking the medicine for at least a week, but then I began to worry about it, and decided to give it a try. Well, this particular medicine did not work very well for me, and caused my blood pressure to do strange things. In between pills, my pulse began pounding, especially in my head, very strongly, and wouldn't let up until I took the next dose. I tried a couple of times to get off the medicine, and had a couple of scary experiences where my blood pressure went very high, with my pulse hammering away at over 100 bpm. I ended up at the emergency clinic several times. It was after about 2 weeks or so of this that I began to notice that my head was throbbing. I finally figured out, through internet research, that it was actually my ear that was pulsating, and that I probably had pulsatile tinnitus. I've since gotten my blood pressure under control, and am no longer on BP meds, but the pulsating tinnitus remains. I'm still searching for answers, and have an appointment with another neurotologist. In the meantime, I've been going to a chiropractic neurologist, who has been working with me. My pulsating is still there, but much calmer.

      A suggestion: Since you're in the Washington, D.C. area, there is a doctor in Baltimore, at the University of Maryland, who specializes in PT, and several people on Whooshers.com have recommended him. His name is Dr. David Eisenman, and you can get more particulars from that website.

      I wish you the best, and would be interested in hearing about the results of your sleep study.

      Best wishes, Karen
       
    3. Sunnyjoy
      Inspired

      Sunnyjoy Member

      Location:
      washington dc metro area
      Tinnitus Since:
      08/2012
      Karen, thank you for your thoughtful response, and for reading all the way through my very long post!

      I'm excited to hear about Dr. Eisenmann and will start researching him as soon as I finish here. I've looked at the Whooshers site but haven't posted there yet. Obviously, it's more directly related than this one. University of Maryland area is an easy drive for me.

      You asked about the sleep lab study. Tomorrow morning is my first consultation there, and they schedule two hours for it, so that's encouraging, and I guess that's when they decide whether a sleep lab study is called for. They know why I'm coming because I had to fill out a detailed questionnaire online before they'd even call me to say "we'd like to see you."

      By the way, my dentist, who in addition to making bridges and crowns has a new specialty in sleep apnea, making devices to put over the teeth, says that waking soon after falling asleep with a pounding heartbeat is a symptom of sleep apnea, if that's of any interest to you. He's studying with someone very interesting with a theory about how if we're not getting proper oxygen as we go through our life also during the day, everything from our posture to our emotions are affected because we're fighting for survival (breathing), and we'll do whatever is necessary with our body to keep our airway open. He says he's seen people stand a couple inches taller after getting fitted for something that goes over the teeth to keep the throat open, because they don't have to do weird things with their body to compensate and get air in.

      What did the neurotologist do who you saw that is different from others do specialists do? They deal with the ears, don't they? I haven't been to an audiologist for years. Years ago I went to the otolaryngology department at Georgetown University in D.C. and saw the head of the department just because I had itchy ears and mild hearing loss. They always want you to see the audiologist first. He said my pattern of hearing loss was unusual, because people usually lose certain frequencies first and my pattern was the opposite.. As a result, he tested me for syphillis (sp). He said it was the pattern that made him think of it so he had to rule it out. Quite a shock! I was negative. I probably should go there now, since maybe they have a broader picture. It is a teaching hospital. Maybe I should have seen a hearing specialist in the first place. Have you done that? Would that be the neurotologist? I'll be interested to hear how your appointment goes.

      Good for you for seeing a chiropractic neurologist. That sounds like a great combination of specialties.

      You asked which ear. I don't know! My perception isn't of the noise being in my ear. I'm hearing directly in my head, so it just feels like it's "in my head" rather than my ear, like a booming vibration.. So maybe that would mean I'm hearing it in both ears. I'm not sure. I think my buzzing tinnitus is in one ear, but I'm not sure how to tell!

      I just don't see how this pulsating stuff could not be vascular in nature. I'm a little afraid of having a heart attack or stroke, but I'm not dwelling on that. I'm clinging a bit to my friend's idea that it's some kind of anxiety attack. See, I don't hear it all the time. Do you hear it all the time? I'd really like to know. Up until the last couple days, it's only happened at night, but now I've started hearing it a few times during the day. Please let me know when it is that you hear your pulsating sound.

      I feel sorry for doctors, in a way. I just found myself starting to criticize by typing here what a couple of doctors said to me that seemed like really stupid remarks, in my opinion, but then I realized that that's not fair. We expect them to have magical abilities sometimes, I think, to be able to see inside of us and know exactly what's happening. But their remarks have made it clear that they're not really taking in what I'm reporting to them.

      By the way, about your pounding heartbeat starting after you started BP med, when I mentioned to my cardiologist that my pulse hit 103 and I was freaking out, he was very dismissive and informed me that tachycardia is a side effect of the calcium channel blocker I've been taking for 2 weeks. Fortunately, it hasn't happened again, but I don't know if that information might be of interest to you. My pulsating was happening for months before my doctor insisted I start BP medication. Obviously, I plan to get off this BP med posthaste. Tomorrow I'm seeing a doctor who I've seen before who specializes in helping people transition off their medications, but I've been seeing her in the past for recommendations of nutritional supplements.

      It's been very challenging to be seeing doctors and show up at work when I'm supposed to. So far my supervisors have been understanding, but that can only last so long. I do have a full-time job.

      Thanks again for your responses, Karen. I do appreciate it. I'll probably see you over on the Whooshers site and also hope to hear from you again here. I'd be interested in hearing about the neurotologist visit.

      Sunnyjoy.
       
    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
      Hi, again, Sunnyjoy,

      I hope your sleep lab consultation goes well, and that perhaps they will be able to assist you. Not long ago, I was having terrible insomnia myself, and considered doing the same thing. My sleep problems have since improved, however. I sleep every night now, but it is still difficult, with the pulsating, to get back to sleep if I wake up in the middle of the night!

      To answer your question: My pulsating is always there, 24/7. I can tune it out during most of the day, especially when I'm at work and distracted, but when I come home to the quiet, I can't avoid noticing the pulsating. The worst part of my day, tinnitus-wise, is always the late afternoon/early evening, when it hits a peak. After that, it tapers down somewhat in the late evening. It is still hard to deal with when I'm lying down at night, but it's better than what it was in the beginning.

      Your tinnitus sounds a lot like mine. When the pulsating first started, I couldn't tell that it was really coming from my ear. It was a booming sound, rather than a whooshing, and kind of a like a drumbeat, and I thought my entire head was throbbing and vibrating. My ringing is more like a steady hissing sound. Does that describe yours, too?

      The thing about pulsating tinnitus is that it's more than a sound; you can actually feel it in your head and body. I've tried to describe that feeling to my husband and to others, but it's hard to understand unless you are actually experiencing it.

      You asked what is different about a neurotologist. Well, they are specialized in the fields of otology and neurology, both of which would seem to be helpful in diagnosing the cause of our pulsating. However, I've been to two neurotologists already. Both said they thought I had otosclerosis, and suggested stapedectomy surgery. That will not cure pulsating tinnitus, but it is supposed to alleviate conductive hearing loss. I'm just not ready for that type of surgery right now; I'd rather try to find out what is causing my pulsating!

      The chiropractic neurologist I'm going to has been really kind and helpful to me. He hasn't cured my pulsating, but he has, I believe, improved things. He also does cranial-sacral therapy, and he has helped me cure my vertigo and balance issues.

      Good luck tomorrow, and I hope you'll keep me posted on how you're doing!
       
      • Informative Informative x 1
    5. Sunnyjoy
      Inspired

      Sunnyjoy Member

      Location:
      washington dc metro area
      Tinnitus Since:
      08/2012
      "Your tinnitus sounds a lot like mine. When the pulsating first started, I couldn't tell that it was really coming from my ear. It was a booming sound, rather than a whooshing, and kind of a like a drumbeat, and I thought my entire head was throbbing and vibrating. My ringing is more like a steady hissing sound. Does that describe yours, too?"

      Yep. That's exactly it. Booming, drumbeat, steady hissing.

       
    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
      Interesting! My theory is that our ears were already sensitive from years of tinnitus (I actually had mild tinnitus for about 25 years), and when the blood pressure changes took place, it somehow changed the blood flow, causing more turbulence in the veins. Just curious: You don't also happen to be hypothyroid, do you? I've read that those of us with underactive thyroid may be more prone to PT.
       
      • Like Like x 1
    7. Kibby

      Kibby Member

      Location:
      Washington, DC
      Tinnitus Since:
      12/2009
      Sunnyjoy, I have also been to GU Medical Center. I saw an infectious diseases doc there to rule out Lyme Disease. I too, was also tested for syphillis. I was shocked, but happy to agree to the test as I would love to have an answer to the PT. Of course it was negative.....:D
       
    8. Steven the Great

      Steven the Great Member

      Tinnitus Since:
      One month ago after sleeping on a high pillow
      Chiropractic fixed my pulsatile tinnitus and it only took one session ! Give it a go, you have nothing to lose but your horrible sensation living in you head.
       
    9. robinbird
      Fine

      robinbird Member Benefactor

      Location:
      New Hampshire
      Tinnitus Since:
      02/2015
      Cause of Tinnitus:
      Diagnosed with high pitch hearing loss, both ears, right is worse
      Hi Steven, I would be interested in hearing more about your t and experience with a chiropractor. I am scheduled to meet with one soon and wonder if I should cancel out of fear it will be of no use. Thanks.
       

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