Whenever I read about a "supplement" that can cure or even help pulsatile tinnitus patients, I have to admit I roll my eyes a little.  That's because I haven't read any accounts by doctors that say that these supplements work.

But when Judie, one of the whooshers in our Facebook group, recently told her story about how taking supplements helped her pulsatile tinnitus, I was intrigued.  I'm sharing excerpts of her messages below (with her permission, of course) because the underlying cause of her pulsatile tinnitus is one that we haven't explored on this site yet: ANEMIA

According to the American Society of Hemotology (ASH), anemia is the most common blood disorder, and one possible symptom of anemia is whooshing!  See the resources at the end of this post. 

Men, women and children can have anemia.  According to this medical journal abstract, Anemia is not a disease in itself; it's evidence of an underlying condition.  Anemia is diagnosed via blood tests.

ASH indicates that there are many different kinds of anemia, so symptoms and treatments may differ. 

But one whoosher, with one type of anemia, found that taking iron and B-12 helped her.  Here is Judie's message:

"I am 64 years old  I have Lupus and chronic anemia.

I have recently found out that some people that suffer from PT are anemic, but once getting their hemoglobin to a good range, the PT goes away or gets much quieter.

I have experienced PT for over 5 years.  Sadly, after I saw many doctors, neurologists, and ENT specialists, I had a head cat scan with contrast (ended up getting an allergic to the dye) brain wave test and a few other grueling ones. The absolute worst part is when the doctor said ..."Learn to live with it!"

Once I started taking iron and B-12 supplements it has helped a great deal.

I was so anemic at one point I had an infusion of iron/B-12 and I enjoyed the peace and quiet until my hemoglobin went back down a few months later...

Until I finally found the fact that I was anemic & simply needed iron and B-12 to build me up is when the whooshing got almost silent.  Funny part was when I went to bed it seemed so strange NOT to hear it. But I don't miss it!

My bottom line is that I had suffered with PT for over 5 years and went through all of the gory tests and terrible side effects from the tests and not even an ENT specialist knew what was causing it. By my own reading and experimenting I found that this works for me and I have "quiet ears" now."

Whooshers, a word of caution: As always, we don't promote self-diagnosis here; instead, talk to your doctor about the possibility of anemia causing your pulsatile tinnitus. We all know that there are so many possible causes of pulsatile tinnitus. It is not easy to isolate the cause -- but we do need to depend on doctors to help us with that.  However, we can help them help us by learning more about the possibilities.

And this goes without saying, but before taking any supplements or medications you should discuss this with your doctor and do so under medical supervision. 

Anemia may not be the cause of my whoosh or yours, but it's worth looking into. 

We'd love to hear your stories.  Thank you, Judie, for sharing yours.  Has anyone else been diagnosed with anemia?  Do supplements and/or vitamins help you, too?  Please share comments below by clicking on the "Comments" tab.  

Sources:

"Anemia," American Society of Hematology, Hemotology.org.

"Anemia,"  Marion Dugdale, M.D., Obstetrics and Gynecology Clinics of North America, Volume 28, Issue 2, Pages 363-382 (1 June 2001).

A couple months ago, I wrote about doctor-patient communication.  As a patient, I often hesitate to relay to my current doctors (whom are wonderful, by the way) how some of my former doctors treated my pulsatile tinnitus symptoms. It often feels like you can't say something bad about one doctor -- even if it's true -- without insinuating something bad about all doctors.  I wonder why that is.

Since I started writing about my experience on this site, it's no secret that many of the doctors I first visited did not take my symptoms seriously.  Not at all.  And on top of that, I was treated like I was wasting their time.  One rolled his eyes at me when I said I heard a pulsing sound.  Another told me to "live with it" and actually said I might be crazy.  And yet another -- one of the "top" doctors in the country, mind you -- spent only 3.5 minutes in the room with me before sending me on my way with what he called "nothing to worry about."  That's just the beginning... I could go on and on. 

If I were in a restaurant and the waiter rolled his eyes at me or called me crazy or refused to serve me, I wouldn't tolerate it.  So why should I tolerate that kind of treatment just because someone has "M.D." after his or her name?

But instead of reacting as I normally would when someone says something unnecessarily rude or mean to me, I would just freeze. I was caught off guard because I'd really never had this experience before with doctors -- or with anyone, frankly.  The "live with it" mantra followed me out the door after each of these visits, as did the notion that maybe I was crazy.  They hovered over me.  I couldn't shake it off; I almost began to believe them. 

There is no way to describe this without sounding melodramatic, and I'm not a melodramatic person.  But there I was: an otherwise healthy woman with a debilitating pulsing sound in my head, desperate for help, yet paying money (big money!) to be treated like I was a crazy person that was wasting doctors' time. Over and over and OVER again.

Very soon after launching Whooshers.com, I learned that, unfortunately, I was not the only pulsatile tinnitus sufferer who experienced this kind of treatment.  Lucky for me, by the time I launched this site, I had found some good doctors, but the veil of (okay, I'll say it) -- SHAME -- wasn't finally lifted until I realized that so many of YOU had experienced the same.  It was sad to me that so many of us had endured the same lack of care, but there really is comfort in numbers.  I'm not crazy and it wasn't me.  It's not you.  

So I was beyond thrilled when I read an article published recently by Dr. Martin Young, an otolaryngologist, titled, "Tinnitus Highlights Poor Doctor Patient Communication."  If you haven't yet read it, do.  Not only does Dr. Young acknowledge the significance of tinnitus patient-doctor communication, but he also specifically distinguishes pulsatile tinnitus sufferers and non-pulsatile tinnitus sufferers by noting that ignoring pulsatile tinnitus symptoms may equate to ignoring signs of a significant health issue.

To tinnitus patients --all tinnitus patients-- the doctor-patient relationship means everything. 

Even if a tinnitus patient suffers the incurable form, it is a conversation that may begin to make us feel better, cope better and live better.  Not only is it not unusual to expect to have this conversation with our doctors, but it is terribly distressing when what we thought would be a conversation turns out to be --well-- something else. It certainly doesn't make us feel any better. 

Now, almost two years into my experience with pulsatile tinnitus, I've found doctors who hear me and listen to me.  They probably hear and listen to every patient who walks into their offices, and they most likely always have.  I regret that it took me so long to find them.  One doctor put his hand on my shoulder and said he didn't think I was crazy.  As funny as it may sound, that was a turning point in my care.  I hadn't even told him about the other doctors, but I'm sure he could tell from the look on my face -- and the long list of films of tests I'd had and my list of doctors I'd already seen -- that I was desperate for that validation. 

Aren't we all?

That's why I encourage other Whooshers to keep looking for advocates when they feel like giving up.  There were times when I thought I was in the Twilight Zone because "good" and even "great" doctors with wonderful credentials and accolades gave me practically zero face time and a level of courtesy that made a trip to the DMV seem pleasurable.  But eventually, I found doctors who believed me when I told them I heard this pulsing noise, and they recognized that my symptoms were important to investigate. They listened to me and several of them heard my whoosh (I have objective pulsatile tinnitus), and they made themselves available to answer my questions.  They treated me like a human being. 

Tinnitus patients seek validation.  This is not a melodramatic need; this is a reasonable need.  And those of us with pulsatile tinnitus seek specialized care, not because we're high maintenance people who want to waste doctors' time, but because medical journal article after medical journal article written by doctors conclude that pulsatile tinnitus can be a symptom caused by something that is more than trivial. You can find links to many of these articles and studies under the "Resources" section on our homepage or on the "Cured Whooshers" page. 

Sure, we'd also like quick explanations, but we know that pulsatile tinnitus is rare.  Once we realize what we're dealing with, I think I can speak for most of us that we can have patience for answers as long as we feel like someone is looking into the underlying causes with care and not blowing us off.

Let's demand better care and treatment and acknowledge the good doctors out there who are helping pulsatile tinnitus patients.  They're out there and they don't receive enough appreciation. 

And by the way, reading Dr. Young's article encouraged me to tell my current doctors about the bad experiences I've had with some (not all!) of my previous doctors.  Change has to manifest from the inside out, so doctors should probably encourage other doctors to treat their patients better.  Dr. Young seems to think along these lines and I agree with him.  And one of these days, I'm going to write to those first doctors I saw, with the sincere hope that they'll consider the next pulsatile tinnitus patient who walks in their offices a little more seriously than they considered me.  After all, how will they know unless we tell them?

Article: "Tinnitus Highlights Poor Doctor Patient Communication," Martin Young, MBChB, FCS(SA), Diagnosis and Treatment, KevinMd.Com, November 2010.