New Member with Pulsatile Tinnitus

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.

 

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.

 

"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.

 

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.....

 

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.

 

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.

 

Hey, everyone. I am so thankful to have found this forum and I have spent an hour browsing topics and getting lost in threads. It's hard to know where to post my introduction to see where my story fits. Since I do have pulsatile Tinnitus and a lack of diagnosis for the other symptoms I think here is a s good a spot as any of the dozens of others.

My story and I will try to be brief. My issues began, I am convinced, in 2017 (I was 57 after I used a Nettie pot on the advice of my GP doctor. It was fine, I had no issue using it until one day I noticed tinnitus, several tones at once. I had experienced this before after loud equipment (farm kid) or a concert but it always resolved. Soon after I had such a feeling of fullness in both ears, with my right being where the "sound" was worst. Saw my GP. He gave me decongestants like Sudafed, and Zyrtec. No effect. I was referred to an ENT, well respected, and had a hearing test. Marked loss of hearing in right ear (I don't recall the specifics) and got hearing aids---no mention of Meniere's disease or other cause (my ears "looked fine.")

The next year, 2018, I experienced severe vertigo while at work. No idea how I drove home but that was a LONG 12 miles and I needed help to get inside. (Yes, I was so dumb to have driven---so dumb.)

That prompted several MRI's (So grateful for insurance) and lots of visits with ENT--inconclusive about narrowing of the bone. (2019) And so I lived with it and worked hard to eliminate salt and get used to hearing aids. I was 59. Then I developed the pulsatile tinnitus on top of the "regular" tinnitus. (You know, just to add to the issues!)

Two other episodes of vertigo in the ensuing time, one as bad a the first, the last was milder, in late June, 2022. Returned to ENT and finally they "suggested" it could be Meniers Disease.

In this time I lost 80 pounds---266 pounds to 186 pounds. (2019 to 2021)

I was proscribed Meclizine 25mg by my PCP when I called about the vertigo---I am unsure if it works or the slight episodes were just that---slight. I take it immediately when I get "that feeling."

It's the end of August and I am 61 now. I hope to at least talk to others in my boat. I doubt surgery will ever be prescribed as this is NOT as debilitating as I have read about. For that I am grateful.