Follow-Up

With all that said in my previous PT post, I do want to say something else:

I have the most wonderful husband who is supportive, funny, smart, sympathetic, and strives to be his best for me everyday.

I have three cute little guinea pigs that make me giggle everyday and are a testament to our financial progress since moving (we only got them once we could afford for their care, and since we made a blind move to a place without having jobs it took months before we could get pets)

I have an apartment full of things that remind me of our journey and that comfort me because they remind me of home,

I have a family of people (both blood and law relatives)that love me and that I love and respect.

We are financially stable, I have a full time job with a boss that listens to me suggestions.

I have clothing on my back, a roof over my head, and live in a safe environment.

I have not experienced trauma from my whoosh (such as a bomb or gunfire that could damage the ear) and I am not in pain from my whoosh.

I will NOT let this stupid whoosh and that stupid doctor drag me down. I will not let this whoosh out-weigh my happiness, no matter how difficult it can be to ignore it.

PT Update #3.

Last week I finally had my appointment with the ENT. I was nervous but very hopeful and optimistic.

Turns out, hope can be dangerous.

Within seconds of him opening his mouth I knew he wasn't the right doctor. I believe his first words were "There's nothing that can be done." Other excerpts of the "conversation" (I put conversation in quotes because it was basically just him lecturing us) were "Anything you read online is pretty much grasping at straws" and "It isn't very common in people your age but it isn't unheard of. It's just a sign of early onset hearing loss", and "It's really very, very, common. Asking someone if they have tinnitus is like asking if they have a right thumb, it happens to everyone", as well as "It's just something you can't really do anything about so you'll have to learn how to cope with it." and "Sometimes once you actually reach the point of severe hearing loss, hearing aids sometimes help". Also "You probably damaged your ear from hearing a loud noise or listening to loud music."

Um, okay, first I think I would remember if something suddenly "happened" that set off this noise. AND if it was loud music the majority of my generation (and my parent's generations for that matter) would have what I do. It seems to me that HE'S grasping at straws.

Zero bedside manner. Zero awareness that even if he was correct, he was basically saying "You can deal with the endless, distracting, overwhelming, maddening pulsing noise in your ear for the rest of your life or until you go deaf."

When Justin asked about Intercranial Hypertension, something that multiple studies have pointed to for being linked with PT, the doctor pretty much smirked in his face. Not only is Intercranial Hypertension linked to PT, but it is specifically linked to young (check) women (check) who are overweight (check) and on birth control (check). The fact that the doctor dismissed it right away and said it was grasping at straws made it very apparent that he doesn't know the modern research and is not willing to even admit that it could be a possibility. He was just so arrogant and condescending I wanted to punch him.

The other obnoxious thing about this appointment is that he basically exclusively spoke with Justin. As if I wasn't sitting there. I started crying out of anger and frustration. Both of us are taking time off of work and waited weeks for this appointment just for him to tell me what a google search for tinnitus will tell me. Pulsatile Tinnitus IS NOT your run of the mill tinnitus. Yes, everyone experiences tinnitus at times. Yes, tinnitus is very common. But is PULSATILE tinnitus common? How is it that it changes when I bend down or move my neck/head? Why does it lessen if I push on my carotid artery? Why do I sometimes hear that high pitched tinnitus noise AND the pulse at the same time? How is it that I can record the noise with my phone? Why does it seem to change in intensity and pitch? Why does it seem worse when I'm on my period? Does it not seem important that it basically started once I got on birth control and gained weight? It HAS to be vascular.

It made for a really awful couple of  days. Even knowing that not all options have been explored, it is really difficult to hear that kind of reply from a professional. This was supposed to be the next step to figuring out what to do. I feel like it stripped away my resilience. It seemed like when I would hear my whoosh it felt especially loud simply knowing that there would be no relief.

I wish that after his first sentence we just stood up and walked out. Instead we paid a larger co-pay than usual because he's a specialist. I don't think I've ever really had a real, full-on panic attack in my life until seconds from walking out of the building. To think that I would just hear this day in and day out for the rest of my life or until I could no longer hear anything at all was enough to put me over the edge. The callousness and obliviousness he displayed was staggering. His summary write-up told that he advised me on coping methods and that I complained of a ringing noise and had hearing loss. The coping method he told me was to listen to a fan or white noise machine at night. I didn't even bother responding that I already do and have for a long time even before the PT, because I figure it was pointless to talk to him.

Okay, but I had an audiogram and the person who conducted that and the ENT nurse said it was perfectly normal. And it is NOT A RINGING NOISE. Does ANYONE listen at this stupid office?!?

I have slowly started feeling better after 2 weeks and am back to trying to figure it out on my own. I am trying to lose weight and I'm going to go off of birth control to try and see if that helps. Hormones are mighty powerful and I would not be surprised if that is a factor.

All in all, it was a waste of time, money, energy, and felt like a huge step back. I am NEVER going to go to a doctor again before contacting them before hand to make sure that they know the damn difference between tinnitus and PT and aren't going to be a condescending ass to me and my husband.

PT Update #2

Full blood panel results came back. Everything is normal.

I want to cry.

Pulsatile Tinnitus Update

Bloodwork came back, and everything is normal. I felt discouraged, but it was just a CBC. Maybe I can get more blood tests with different levels of things, like hormones/thyroid levels. We'll see.

My Pulsatile Tinnitus Story

Be prepared to read a crap-ton. That's what this blog is for, anyway. Writing out what I'm thinking and feeling. Before you read this post, I want to clarify that I know that in the big scheme of things I should be grateful for my health and my life. I am. I understand fully that my situation could be a lot worse.

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.

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.