Suicide is something no one wants to talk about - or think about - but the reality is that in the few years this site has been up and running, I've heard from more than a handful of people whose pulsatile tinnitus is so debilitating, so disturbing, that previously unthinkable thoughts surface. 

So I'm going to talk about it.

Sometimes it's the actual sound that is debilitating; other times it's the lack of seriousness and consideration our symptom receives in some doctors' offices or just the sheer stress accompanying it all.  The thought can last a few moments or be profoundly overwhelming.  Sometimes, sadly, it takes over.  These poll results prove that these thoughts are not all together uncommon. 

The majority of those Whooshers who participated in the poll answered "No," but even if only a single person had answered "Yes," I would still stress this: You're not alone. One quarter of Whooshers who participated in the poll have had suicidal thoughts.  That is a terribly large percentage. 

If you or someone you know is experiencing difficulty, there is help.  You can join our vibrant Facebook group page for support (posts are private and accessible only to group members).  There are many resources, too, at the International Association for Suicide Prevention (IASP).

Or you can write to me at whooshers@gmail.com.

If you're a doctor, friend or family member of a Whoosher, please consider these results.  And stay close.  Pulsatile tinnitus is a symptom that not too many know about before they begin experiencing it, and dealing with it can be a very, very isolating experience.  

-WhooshEr 

A couple of days ago I received an email from a whoosher who first contacted me a few months ago.  Like many of us, she was almost at her wits end searching for a proper diagnosis, and treatment seemed like an unattainable goal. But she and her doctor achieved it, and just a day after her surgery she wrote this:

Every time I lean forward, sit down, stand up, swallow I expect a loud whoosh….and nothing! My surgery was yesterday. I do have some pain in my right ear, but it's a small price to pay for peace and quiet after two solid years of whooshing that progressively got worse.

As everyone has told me, Dr. Eisenman from the University of Maryland is AMAZING! Thanks to the Whooshers.com site I found [the abstract for] his research study from digging around on the site and realized that this doctor was located a little over an hour drive away. On gut instinct, I thought this would be a good bet, since even if I didn't have the same condition that he researched, perhaps he would look until he found what was wrong. Fortunately the diagnosis Dr. Eisenman found (on a CT scan of the temporal bones) was the same as in his study abstract I found on the Whooshers.com site.

Sigmoid sinus diverticulum (for dummies version)

Sigmoid sinus = S-shaped vein that is connected to jugular vein and transverse sinus that all work together to run blood back and forth to brain. The sigmoid sinus (vein) sits right in the ear bones AKA the temporal bones.

Diverticulum = bulge in vein caused by blood flow going through a weak area of the vein (kind of like a weak spot in a water balloon)

The bone area next to the vein wears away over time as well.

The CT scan of the temporal bones and a trained eye revealed the bulging vein near the ear and some missing bone in the same area. The surgery involved shrinking down the bulging vein and using bone grafts and synthetic materials to rebuild the worn-down bone.

Cause of the condition (sigmoid sinus diverticulum) is generally unknown, but it is seen in patients with similar demographics that lead to benign intracranial hypertension, but no direct causation has been found that increased spinal fluid causes the sigmoid sinus diverticulum. There are other possible individual factors. For me one of which is extra small veins on the left side of brain that caused extra blood flow in right side, which could have led to the bulge on the right side. Also, a really bad ear infection with prolonged fluid buildup preceded the onset of the pulsatile tinnitus symptoms, which may have exacerbated an already developing bulge. Another couple of factors, which the doctor doesn't think are related, but I'll toss in there are that I had spinal meningitis as a baby and I have high blood pressure, which started when I was an otherwise healthy teenager.

The two-year diagnostic process leading up to the definitive diagnosis was frustrating and stressful. The sounds started after a really bad ear infection in April 2010. After three rounds of antibiotics, fluid remained in my ears for about a month during the time I flew on an airplane. I never had ear infections as a child, so I didn't even realize I had one until it was really bad. Musinex was prescribed for the fluid and eventually it went away. But that's when the whoosh whoosh whoosh started, so I went back to the doctor and was prescribed ear drops with steroids. Still, no improvement in the sound and the doctor said she could not see fluid.

I ended up moving to a new state and I went to a new doctor with reports of the whooshing. When he pressed on the carotid artery and I reported the sound stopped, he said, "Well this could be an aneurism." He ordered an MRA (angiogram with dye) to rule out aneurism, vascular malformation and tumors. Needless to say, upon hearing the word "aneurism," I was in tears and thinking something really bad could happen to me. When the test came back "normal" I was relieved I had nothing life threatening, but still very much disappointed that no cause was found.

The next step was an Ear Nose and Throat doctor, who really tried to figure it out. He ordered an MRI of head and neck and did note that my left brain vein was smaller than the right and that could have something to do with it, but still no definitive diagnosis. He also placed a drainage tube in the ear drum in case there was a eustachian tube drainage problem- it wasn't his first suspicion but given the low risks of tube placement, it was worth a try. It didn't improve a thing and he removed it after a couple weeks. He said I needed to see a sub-specialist of a sub-specialty. He offered up a couple names of doctors in town, but I was so discouraged and frustrated at the time, I let it go for a while.

About six months later I broke down in tears because I couldn't hear the TV over my whooshing sounds. This was late at night, so I went to the Internet and found Whooshers.com. I spent several hours on the site reading causes of pulsatile tinnitus and felt like I was not alone in the world of whooshing. I also read several of the study abstracts and that's where I found Dr. Eisenman's name, and realized he was close enough driving distance I could see him. When I contacted him through email I got a personal response. Within a week I was able to get all the tests done and receive a diagnosis! I was so relieved!

The surgery seemed really scary to me at first since it's so close to the brain and would be done on a vein that sends blood to the brain. And technically the surgery is "elective" since the condition isn't life threatening, but my quality of life was starting to become low due to the constant whooshing sounds. As a musician it impacted my singing voice and made it hard for me to hear, in spite of having better than perfect hearing test results. Also the sound had gotten worse and louder over time where I could even hear it in more noisy environments. It was hard to concentrate on my work and sometimes hard to sleep at night. So I decided the risks were worth it, and with Dr. Eisenman's success stories, experience and research I felt I was in good hands and just went on faith.

As I'm writing this story, it's been about 24 hours since I left the outpatient surgery center, and my pain is manageable with prescription pain meds and the whooshing sounds are completely gone. I've had a hard time sleeping due to weird dreams about my ear bursting open and the sounds returning. Sometimes I wake up because of pain and other times I wake up because the silence is just so unfamiliar. I had gotten so used to every move making an exaggerated whooshing sound. It's something I'm very happy to adjust to, but after two years of constantly hearing and noticing the whooshing sounds, it is very strange not hearing it anymore.

I've had just one day of silence so far and I sincerely hope the cure is long-lasting! It was worth the effort of researching online and the pain of surgery. I encourage all whooshers to search for their cause and cure. Even if a cure isn't feasible, keep researching ways to manage it and searching for new medical studies. You never know… some new research might be right around the corner and a doctor might be right down the road. Or there could be a strategy that makes it a bit easier to live with.

Thank you to the founder of Whooshers.com for your dedication to helping us find peace and quiet while offering support to us and education to the medical community.

-Abigail T.

Abigail, thank you for sharing your story and especially for your kind words!  I've heard from a bunch of patients with SSD who were recently diagnosed and successfully treated.  It's encouraging and an inspiration for all Whooshers! 

I've added this story to the Cured Whooshers page where links to medical reports and personal stories about many underlying causes of pulsatile tinnitus are detailed.

There is much more information on sigmoid sinus diverticulum and dehiscence, including links to summaries of recent medical reports, lists of symptoms provided by medical institutions and more, within previous Whooshers.com posts, here and here.   

This poem was written by one of our Facebook group members, and she gave me permission to repost it here.  She said it was written straight from the heart during a sleepless night of PT.  There are some "bad" words, but let's be honest.  We've all been there.  

It's time for bed ~ but the swoosh is in my head.
With every beat my heart does take ~ a swooshing noise my ear does make.
I toss and turn and try to sleep ~ but in my head the thoughts do creep.
Is this real, this pain I feel? Just wtf is the deal?
Test after test, I try my best, but doctors I sure do detest.
They guess and guess and get nuthin but a hot mess.
They scan for this and scan for that, marking all the scans as stat.
How did I get here? Stuck in this hell?
Great mental stability was never my best ability ~ but sweet jesus what will it take? How many more appts will I make?
I'll never forget the day it started ~ the day my old life departed.
It's so sad looking back ~ this shit I feel is so wack :(
I miss playing cards with my friends ~ heckling was one of the hottest trends.
We would smoke, and we would laugh, good times we Always did have ;)
But those times have gone away since the swoosh is here to stay.
I wonder how I can go on, doing what needs to be done and never having any fun.
I miss those days and my crazy ass ways!
The swoosh is so hard to explain, it doesn't cause me physical pain.
It sucks the life away from you and there's nothing you can do.
Nothing is quite the same cuz now my life has become so fucking lame.
I can't sleep ~ I let the thoughts creep in too deep ;(
The thoughts and the swoosh, make it so hard to turn off my mind and leave this bs behind ~ now it's almost one and this poem is done ~ goodnight :)

 -Dorine Pidrak Steele