I have pulsatile tinnitus. This means that I can hear a noise in my ears that is to the beat of my heart. For a long time I didn't know what it was that I had. I still don't really know what causes it, but I am glad I know that it has a name and other people experience it too. Many people experience tinnitus, but only 3% of those that do, have pulsatile tinnitus.
The majority of my experience with pulsatile tinnitus has always been in just my left ear. It all started about 3 to 4 years ago. It's hard to pinpoint a time, because it has been a long time and only around 2013 did it worsen. It used to be only occasionally, usually at night. It wouldn't last very long and then it would go away. This is fairly normal for a lot of people, I think. However, for me, it gradually became more and more present. I tried a lot of different things for various amounts of time, including drinking a lot more water, reducing salt, less starch, more protein, stretching exercises, I started going to the gym at that point, tried to improve my posture while at the desk, etc., anything I could think of that could be causing it. I have yet to see any difference with the noise depending on diet. It doesn't hurt to do those things, though.
Instead of hearing it just for a moment, it would start going for a good 10 to 15 minutes. That turned into a half hour to a full hour, to happening from about 6pm until I went to bed, to being in the middle of the day, instead of just at night.
Fast forward, and it is the noise I hear almost 24 hours of the day. About two months ago I started to hear it in my right ear at the same time. Luckily, this hasn't set in completely, otherwise I think I'd go berserk and you'd be getting blog updates from an insane asylum.
From the moment I wake up to the moment I fall asleep, it is what I hear. It doesn't affect my hearing, but it does affect my focus. It feels like it takes peace out of a lot of situations. This past weekend I felt really happy because the window was open and birds were singing, and the sun was shining through the blinds while I was snuggled under the fluffy comforter. But I can't fully concentrate on the bird noises or fully relax, because there is this constant drumming pulse in my ears.
Sometimes it is sort of a dim background noise. It also isn't very consistent. It will be quiet, then loud, then quiet again within seconds. It can be roaring and I turn my head and it goes back to just whooshing. I'll bend over and it is a constant "whoosh" instead of a beat. The tone can change too. At times it is a mid-range droning whoosh, other times it can be sort of higher pitched and loud. I can't seem to correlate these differences. In addition to that, I can feel the muscles around my right ear tense up when it goes, in a way that my left ear doesn't. There is just a lot that doesn't add up.
It can be disorienting. It feels like when I'm on the phone and someone else in the room starts talking to me. Like two people are talking to me at the same time, but neither can hear each other.
Sometimes it is sort of a dim background noise. It also isn't very consistent. It will be quiet, then loud, then quiet again within seconds. It can be roaring and I turn my head and it goes back to just whooshing. I'll bend over and it is a constant "whoosh" instead of a beat. The tone can change too. At times it is a mid-range droning whoosh, other times it can be sort of higher pitched and loud. I can't seem to correlate these differences. In addition to that, I can feel the muscles around my right ear tense up when it goes, in a way that my left ear doesn't. There is just a lot that doesn't add up.
It can be disorienting. It feels like when I'm on the phone and someone else in the room starts talking to me. Like two people are talking to me at the same time, but neither can hear each other.
When I'm having a conversation with my husband and he is telling me something important, I sometimes find myself struggling to focus on his words, because it might be an especially bad moment, and they are roaring in my ears.
I'll try to stop whining at his point in order to deliver some of the news that we have found:
I went to a nurse practitioner, who said it might be fluid in my middle ear. She told me to take Claritin D for 10 days. If that doesn't work, try Mucinex. I did this for about a full month, every day. It lessened the whooshing noise, but it never fully went away. I scheduled another appointment with her, which was about 5 minutes long because she just scheduled an appointment with an ENT. I was a little annoyed that I waited a month and a half, took off work, and paid a co-pay just to have a 5 minute "conversation" that consisted of her just writing a name on a business card and sending me to the secretary for the to make an appointment. Okay. I can make an appointment myself. Don't tell me to come back and see you if the problem persists if you are just going to do that.
At the ENT they took a hearing test and tested the pressure in my ears. Everything was normal. I don't have fluid in my middle ear. On one hand, I was relieved I didn't have to get tubes in my ears. On the other, I was discouraged that I still didn't know what it was or how I could stop it. I was a bit frustrated because within this visit I spoke to 3 different people. All of them referred to the noise as buzzing or humming. I tried to express that it wasn't a constant hum, it was a pulsing beating noise, and no, I don't have ear damage, no, I haven't had a sports injury, no, I don't have sinus problems. Luckily, we did get some progress, in eliminating the possibility of fluid in my middle ear.
The ENT specialist told me to get blood drawn because I might be anemic, which could cause that noise. She also scheduled a CT Angiogram at the hospital for the following week, because it could be a kinked or bent blood vessel in my head or neck that is causing that noise in my left ear (at this point I had never heard it in my right ear).
I had the angiogram and everything was normal. It was the worst good news I had heard. It meant that luckily, I didn't have a tumor or a partially blocked vein in my neck or head, but it also meant that we still didn't know anything. This was a maddening experience because it felt like pulling teeth to get anyone to respond or send me my test results. There has been no follow up from the ENT specialist, despite her seeming to know that if the test results came back normal, that meant that nothing has been solved. It took about 17 phone calls, who knows how many transfers, and many, many answering machines to finally get a human being to talk to. When I did, they told me that they couldn't find my blood work and that it had been lost. Then they told me that I can come in and get a new blood sample, and they won't charge me. Gee, thanks, I appreciate that...?
Oh well, this gives me a change to clarify that I want every possible test result done when they analyze my blood, not just the basics.
In the meantime, my sweet husband has done a lot of research and we are trying out different things. We have found an entire community of people experiencing the never-ending noise. My coworker let me borrow a blood pressure cuff kit she has, and we have found that I tend to have low blood pressure. This is strange, because I was expecting high blood pressure. I also tend to hear it less after drinking tea or coffee. So caffeine/the effects of caffeine, which is vascular, play a role, as well. So far our top suspects seem to all be related to blood. Justin noticed that a lot of the people on the Whooshers website and community page were women. In digging further, we found that quite a lot of women who have pulsatile tinnitus also are on birth control, specifically the one I am on. We also think my thyroid could be playing a role. Just more reason to have blood test results done.
Another bit of progress I have found, is that on one of the whooshers websites I found that some people can record their whoosh. I found to my amazement that by simply putting my phone mic to my ear and hitting record, I can hear my whoosh! Other people can hear it too! This alone lifted my spirits. It felt like having bad cramps while on your period, and magically being able to make every male in the room experience the hell of cramps, if only for a minute. It felt like being able to say "you don't understand unless you experience it, and for 15 seconds, you can!". Not that I want to spread misery, but it's a relief to be able to explain exactly how it sounds constantly.
We're hoping to find another doctor that will really act as an advocate for me. I know that I am not a high priority. My life isn't in danger and I'm not in physical pain. But when I want to cry because it just won't leave me alone, it's a problem. When I want to punch our neighbors in the face for playing their bass which works in a weird opposite and disorienting beat to my ears, it's a problem. When I want to enjoy the sound of nature, not the sound of my heart whooshing in my ear, it's a problem. When I want to go ballistic and smash things in the doctor's office because they tell me that it's tinnitus, and a lot of people experience it, (in other words, get over it) and that they'll just book an appointment for 8 weeks out, it's a problem. When I feel completely overwhelmed to tears while at work, at the prospect of just having to "deal with it" for the rest of my life, it's a problem.
I'll try to stop whining at his point in order to deliver some of the news that we have found:
I went to a nurse practitioner, who said it might be fluid in my middle ear. She told me to take Claritin D for 10 days. If that doesn't work, try Mucinex. I did this for about a full month, every day. It lessened the whooshing noise, but it never fully went away. I scheduled another appointment with her, which was about 5 minutes long because she just scheduled an appointment with an ENT. I was a little annoyed that I waited a month and a half, took off work, and paid a co-pay just to have a 5 minute "conversation" that consisted of her just writing a name on a business card and sending me to the secretary for the to make an appointment. Okay. I can make an appointment myself. Don't tell me to come back and see you if the problem persists if you are just going to do that.
At the ENT they took a hearing test and tested the pressure in my ears. Everything was normal. I don't have fluid in my middle ear. On one hand, I was relieved I didn't have to get tubes in my ears. On the other, I was discouraged that I still didn't know what it was or how I could stop it. I was a bit frustrated because within this visit I spoke to 3 different people. All of them referred to the noise as buzzing or humming. I tried to express that it wasn't a constant hum, it was a pulsing beating noise, and no, I don't have ear damage, no, I haven't had a sports injury, no, I don't have sinus problems. Luckily, we did get some progress, in eliminating the possibility of fluid in my middle ear.
The ENT specialist told me to get blood drawn because I might be anemic, which could cause that noise. She also scheduled a CT Angiogram at the hospital for the following week, because it could be a kinked or bent blood vessel in my head or neck that is causing that noise in my left ear (at this point I had never heard it in my right ear).
I had the angiogram and everything was normal. It was the worst good news I had heard. It meant that luckily, I didn't have a tumor or a partially blocked vein in my neck or head, but it also meant that we still didn't know anything. This was a maddening experience because it felt like pulling teeth to get anyone to respond or send me my test results. There has been no follow up from the ENT specialist, despite her seeming to know that if the test results came back normal, that meant that nothing has been solved. It took about 17 phone calls, who knows how many transfers, and many, many answering machines to finally get a human being to talk to. When I did, they told me that they couldn't find my blood work and that it had been lost. Then they told me that I can come in and get a new blood sample, and they won't charge me. Gee, thanks, I appreciate that...?
Oh well, this gives me a change to clarify that I want every possible test result done when they analyze my blood, not just the basics.
In the meantime, my sweet husband has done a lot of research and we are trying out different things. We have found an entire community of people experiencing the never-ending noise. My coworker let me borrow a blood pressure cuff kit she has, and we have found that I tend to have low blood pressure. This is strange, because I was expecting high blood pressure. I also tend to hear it less after drinking tea or coffee. So caffeine/the effects of caffeine, which is vascular, play a role, as well. So far our top suspects seem to all be related to blood. Justin noticed that a lot of the people on the Whooshers website and community page were women. In digging further, we found that quite a lot of women who have pulsatile tinnitus also are on birth control, specifically the one I am on. We also think my thyroid could be playing a role. Just more reason to have blood test results done.
Another bit of progress I have found, is that on one of the whooshers websites I found that some people can record their whoosh. I found to my amazement that by simply putting my phone mic to my ear and hitting record, I can hear my whoosh! Other people can hear it too! This alone lifted my spirits. It felt like having bad cramps while on your period, and magically being able to make every male in the room experience the hell of cramps, if only for a minute. It felt like being able to say "you don't understand unless you experience it, and for 15 seconds, you can!". Not that I want to spread misery, but it's a relief to be able to explain exactly how it sounds constantly.
