This is the link for the International Association for Suicide Prevention.

This site has been up and running for almost nine years. When it was launched, I truly didn't think anyone would find it, much less read it.

That's in part because I was the only person I knew with pulsatile tinnitus. I was told by doctors - very good doctors in a large US city - that they'd never seen another patient with the symptom I described. Some of them didn't believe me - they actually told me that. I don't think I was completely conscious of the impact of each day that went by before I found doctors to believe me, to help me, and to work with me and for me toward a diagnosis. Looking back, I recall being extremely determined and diligent on my quest to find answers, but was there a part of me that wondered, what if I never do? You bet.

That's a scary and exhausting prospect for anyone who experiences pulsatile tinnitus for any period of time. Even for the most optimistic person, it can be an incredibly isolating reality, in a world where you hear a sound in sync with your heart beating

every.second.of.every.minute.of.every.hour.of.every.day.of.every.week.of.every.month.of.every.year.

And for some of us, years really do go by.

It's very difficult for anyone who doesn't experience pulsatile tinnitus to imagine, even if they try to.  

I recently marked my nine year whoosherversary. What are nine years of pulsatile tinnitus like?

60 whooshes a minute.

3600 whooshes an hour.

86,400 whooshes a day.

31,536,000 whooshes a year.

Nine years of whooshing = approximately 283,824,000 whooshes.  

In that time, I've heard from people from all over the world: men and women of all faiths and no faith; all occupations; all levels of education; married, single, widowed, engaged, pregnant. A melting pot for sure. But what's shared among each and every person is a quest for a diagnosis and, in the meantime, a method of coping - that is, a way to get a decent night's sleep, a way to not be anxious all the time about an unknown cause, a way to feel hopeful that the answers are near. 

In nine years we've come a long way. We led the way to a set of pulsatile diagnosis codes, which formally distinguish our community from the tinnitus community and have already helped many get the attention and tests warranted. Doctors around the world recognize pulsatile tinnitus and continue educating their colleagues. Thousands of people from all over the world have joined our group discussion page and dozens request to join every week.    

But some people remain in despair, despite the support available now in and for our community, to find answers or methods of coping that work for them. And it's not their fault, nor their choice. Some people with pulsatile tinnitus - especially those with severe intensity pulsatile tinnitus - endure such difficulties dealing with what life with pulsatile tinnitus is like that they decide that they cannot and do not want to live another day. If we're lucky they reach out to tell us - a cry for help. But sometimes they don't, they can't. 

This post is dedicated to those people, to anyone reading this who may feel that way.  

By far the hardest part of maintaining a community like this is not the scores of emails each day; it's not moderating our very active group Facebook page.

The most difficult part is knowing that some people out there are in such despair that they feel they just can't do it anymore, and not being able to convince them otherwise. It's hearing from people with familiar situations - the doctors do not believe them that they hear a sound in sync with their pulse, or their family does not believe them, or the doctors do not order tests to find the cause nor refer them to doctors who may, or their insurance companies won't authorize the tests that doctors ordered, or their quality of life or work has been irreparably changed with no hope in sight - there are so many obstacles members of our community face.  

But even the very worst and difficult day for me for reading or listening about someone's despair is nothing compared to the difficulties faced by those who relay these feelings to me, and sometimes, with our community on our group page.

While I had no idea anyone would find this site, I sure am glad for each and every person who did. In nine years we have made many accomplishments to increase awareness among patients and the medical community. Personally, I've gained much optimism from the success stories, the Cured Whoosher stories, even the small steps members of our community make every day toward a diagnosis and treatment ("I helped my doctor understand that pulsatile tinnitus is not tinnitus!" "I made a doctor's appointment!" "I had my cerebral angiogram and it wasn't too bad!"). I'm grateful to see every new visit to this site, every new member request to our group page, because I know that reaching out is sometimes not the easiest thing to do.

Years ago, because I'd heard from one too many people who expressed these feelings, I posted a link to suicide resources to our homepage. Today, I remind everyone that it's there. Help is there. It's here. Our community, to support those who feel alone, is here. And we're not going anywhere. We hope Whooshers everywhere, their medical professionals and their family and friends, will stick together and help each other remember:

You're not alone. We get it. There is help.  

This is the link for the International Association for Suicide Prevention.