My Whoosh – An Unlikely Friend

She never leaves me.
Through joy or sadness
Solace or upheaval
She remains steadfast and true.

I sleep, she is there.
I awake, she is there.
Never wavering, never silent
She fills my day, every day.

I ignore her.
She persists, unfazed.
Her devotion only to be broken by fate
Or by the stillness of my beating heart.

– Mary Onorato

_______________

To a Whoosher’s Pulse

Albatross,
abacus,
heart beads bounding;
 
saffron stacks,
petals flap,
diving birds;
 
water drops shaken.
Songs of souls
never gone.

– Glenn D’Alessio

__________

One of our own Whooshers was recently cured and shared his story with BBC Radio. The clip begins at 10 minutes, 24 seconds into the show and concludes at 21 minutes, 37 seconds.

CLICK HERE TO LISTEN! This link has expired. We hope to get a working link to the radio spot soon.

The interviewer starts by introducing the symptom as "chronic tinnitus," but Ian does a great job explaining that his symptom is not tinnitus at all.  It's pulsatile tinnitus. 

Pulsatile tinnitus is not tinnitus.

Additional coverage of Ian's story can be found in the articles below.

My only gripes are that the writers (with the exception of the last one) completely confuse tinnitus and pulsatile tinnitus -it would be more accurate to use the word "pulsatile" in the titles of the articles. AND they wrongly refer to pulsatile tinnitus as a condition when it is a symptom, not a condition.  These are more than misguided mistakes; these errors provide false hope to sufferers of regular tinnitus, for which there is no cure, and they confuse the smaller pulsatile tinnitus community with the larger, much more common one, which is a substantial difficulty we pulsatile tinnitus sufferers face to get proper attention, evaluation and treatment.

Nevertheless, this is very nice exposure for pulsatile tinnitus and Ian did a great job conveying his experience. I am proud of him.  His story is yet another courageous and wonderful example of a pulsatile tinnitus patient who wouldn't and didn't give up. 

Enjoy the silence, Ian!  

"Tinnitus Sufferer on the Verge of Suicide Finds His Own Cure by Emailing Expert 3,000 Miles Away in America," Emma Innes, Daily Mail UK, March 13, 2013.  

"Tinnitus Victim Cured After E-mailing Brain Scans to US Expert for Second Opinion," The Times Co UK, March 14, 2013. 

"I Got Lifesaving Op for Whooshing Thanks to US Help," David Powell, DPW West, February 19, 2013.

For more information on Venous Sinuses, see this link on neuroangio.org. 

To read another "Cured Whoosher" story about transverse sinus stenosis, click here.

More Cured Whoosher stories, on a variety of underlying causes, including medical reports and abstracts, can be reviewed on the Cured Whooshers page. 

NOTE: Coincidentally, an interesting medical report was just posted to support stenting the transverse sinus stenosis to remedy pulsatile tinnitus after noting that other treatment was unsuccessful. The report links transverse sinus stenosis with some cases of intracranial hypertension, also known as pseudotumor cerebri (although that name is a bit outdated). It reports successful treatment to cure all pulsatile tinnitus sufferers in the study who experienced unilateral (one-sided) pulsatile tinnitus.  

The writers should have stressed and indicated *pulsatile* tinnitus, not tinnitus, since their synopsis clearly states, "Eleven patients reported subjective pulsatile tinnitus."

Pulsatile tinnitus is not tinnitus.

"Brain Stent Eases Tinnitus, Helps Vision," Shalmali Pal, Contributing Editor, MedPage Today, March 18, 2013.

This is a Cured Whoosher story from "AC," a woman in the UK.  After a long struggle seeing doctors who told her she had "tinnitus" and "live with it," AC found a doctor who knew better, and she found answers.  She also found a cure.  Her diagnosis: dural arteriovenous fistula (DAVF).  You can read more about DAVF on neuroangio.org.

Pulsatile tinnitus is NOT tinnitus!

Here is AC's inspirational story:

It all started in March 2010 with a noise in my left ear a bit like the type you get with a cold; blocked nose etc. After two weeks, when it hadn't gone, I thought I may need my ears syringed. I was told they were fine and was given a nose spray. It didn't go and was more persistent; it seemed to have a rhythm as if I could hear my heart beat. It wasn't too bad when there was other noise going on but when there was silence it was very annoying and, yes, it sort of whooshed. It was starting to disturb my sleep.

Eventually my GP sent me to ENT. Here in the UK you have wait for a number of weeks to see someone. I was a little stressed by the time I got there. The week before my appointment I was reading in bed and placed my head in the crook of my arm for more support. My clenched hand was pushing into my head just behind my ear. I realized that the noise had stopped. I removed my hand and it started, so put it back and it stopped again. I devised a method of trying to sleep with a small stuffed toy wedged behind my head to stop the noise. Fine until you moved and it fell away. By then though, any port in a storm. I saw the ENT man who was the most arrogant it has ever been my misfortune to meet. He was very rude and didn't really want to listen to what I had to say. He insisted I had Tinnitus, nothing more. I told him I got a whooshing sound like my heart beat, not ringing or whistles, and when I told him how pressing the back of my head made it stop, he looked at me as if I'd sworn at him. He eventually looked in my ear, told he couldn't find anything and to go away and get used to the fact that I had Tinnitus.
 
Things went from bad to worse, the noise got louder at times and at times I would say I could feel it. Then I started to hear a squeak. Not often, but it was there. Sleep became harder, my little toy never stayed there all night. After a few weeks and seeing different GPs, one sympathetic locum sent me to the larger hospital for a second opinion. I was ready to throw myself out the bedroom window by then. They couldn't have been more different. They listened, looked in my ear with a special microscope and arranged an MRI and MRA scan. The registrar also arranged for me to go to the Tinnitus Clinic.

A woman named Megan saved my life. I was told there was nothing found on the scans. In the meantime Megan recommended a sound machine to put under my pillow at night to help disguise the whooshing. She saw me every few months for a year to help keep me sane. The machine helped a little but by then I was feeling a pulsing sensation behind my ear and it was squeaking more. The noise would get louder then soften and at times it seemed to pop; all around the ear area felt strange at times. When it was very bad it made me nauseous. Megan suggested I go back to ENT and the GP got me an appointment; this time with the main consultant. He was very kind and said the scan came back clear and that it could be a trapped capillary. He listened with a stethoscope behind my ear and sent me on my way.

That was March 2011, a year after it all began. In June, I get letter to say they wanted to see me at ENT about my symptoms; as I was to wait a month I thought it was just routine. It wasn't. It seems they had taken another look at my scans after my previous visit and found a malfunction in the skull behind the ear!!! He wanted me to go to a Neurosurgeon at another hospital. My feet didn't hit the ground then. Within two weeks the Neurosurgeon was on the phone to me to talk about what they thought had been found and made arrangements for a cerebral angiogram. That showed I had a small av fistula of the dura. At last!!!!! I was told all the banging, whooshing, pulsing and even the squeaking was consistent with what had been found. It was suggested I have treatment called ONYX; a surgical glue that is injected into the blood vessels in that area that would seal the malfunction and hopefully stop all the symptoms. It was done in the same way as the cerebral angiogram, only this time I was given an anaesthetic. Here I am over a year later with no noise or pulsing. It was hard work getting heard and believed.
 
One of the things Megan said I might want to do was join the British Tinnitus Association as although Pulsatile Tinnitus appears different to Tinnitus in lots of ways, there may be something they have that may help. Well, it did, as my first magazine from them had an article about the Whooshers.com site by Emma. I logged in and knew I'd found the right place and help. Without this site I don't think I would have found the strength or knowledge to get the answer and the help I needed. I hope my story will encourage anyone else not to give up and to find the answer to their whooshing and eventually a cure.

I would like to say a big thank you as your site helped me find the cause and a cure for my PT. It was hard work to get listened to by the medical profession, one ENT doctor treated me with contempt. I was sent, for a second opinion at another hospital, only to be told at first there was nothing on the MRI or MRA. Another look at them six months later found I had a small DAVF. Once found it was quickly dealt with. I had the ONYX treatment and a year on still have no noise. It's been heaven. I have to say the third hospital where I was sent to have the treatment done was wonderful. Everyone was very kind and thoughtful and very understanding of my PT. I was told all my symptoms were consistent with what was found. One in the eye to the first ENT man.

Your site helped me not to give up.
 
Many Thanks,

AC from the UK

Read more Cured Whooshers stories along with medical report abstracts on the Cured Whooshers page.  

What if you could make a video that would replicate your whoosh? A video that would let doctors "see" the pulsing, in real time?

A recent New York Times article titled, "Scientists Uncover Invisible Motion in Video," explores exactly that: making visual what is otherwise not.  The video below goes along with the article. 

Cool, right? The team of folks at MIT developed a way to record the movements inside our bodies that are invisible to the naked eye, using color and a computer program that detects and records the tiniest motions.

As a whoosher, the notion that this is a method to record "when the blood goes where" is intriguing, since pulsatile tinnitus is often a result of turbulent blood flow.  Did you see the pulsing colors of the man's heartbeat in the video? 

We know not all whooshes are the same.  That is evident from the collection of whoosher-submitted pulsatile tinnitus sounds on our Sounds page. I've often wondered, do all whooshes caused by a particular cause have similar characteristics?  

I wonder, if a sample of whooshers were "VideoScoped," with this program described in the article, would a visual distinction be available to help determine the cause of one's pulsatile tinnitus? If some of us with a diagnosis could be recorded, would our "whooshes" look different from those with other diagnoses?  Would it have similarities with other whooshers' whooshes with the same cause?  Could this be a method to help diagnose patients with otherwise invisible symptoms?

Would you like to record your whoosh and give it a shot? Here is the link with more info about how to record and upload your video. I'm really excited to try it. It works with any video... so what you'd do is record your ear or head, I guess. The place where you perceive the whooshing. People with a lot of hair may find this tricky... my whoosh can be heard with a stethoscope to the back of the head, so I wonder if my hairdo will not make it possible to record a decent video. All you bald whooshers out there listen up! You have no excuse not to try this. Also, some of you may have a pulsatile tinnitus cause that can be detected via the eye.  Why not try recording your eye, as is shown in the video?  I wonder if you'd be able to see pulsing movement that way, too.  

Did I say the link to try it out is FREE?   

If you do upload a video and you see something neat, please send me your thoughts and clips to whooshers@gmail.com! I'd love to hear from you. 

We've asked this question before: Is there a connection between weight and whooshing?

We recently posted the results of this poll, but I thought it would be worth exploring a bit deeper. 

Since the launch of this site in 2009, we've discovered many, many possible causes of pulsatile tinnitus.  Some are connected to weight and some are not. Yet, often before the cause is determined, many of us are told to "lose a few" to see if there is any change in the whooshing.

I am a patient; I am not a doctor. But I think it's fair to say at this point that I am a patient who has heard from many, many, MANY other pulsatile tinnitus patients. I appreciate all the whooshers who have trusted me with their stories and shared them on this site and on our Facebook group page. We learn from each other, for sure.

I have heard from patients who have gone from doctor to doctor with no answers but instead a "recommendation" that weight be lost. My concern is when the recommendation comes before a formal diagnosis of an underlying cause. I also get concerned when I hear from patients who tell me their doctors have instructed them that weight loss is the answer without investigating other non-related possibilities. 

Just because someone is overweight does not mean that fact is the source of all their problems. 

For some people, losing weight does help the whooshing lessen or even go away. Let me say that again: yes, for some people, losing weight relieves the whooshing. What a relief! Can you think of a better incentive to lose weight? I can't. But it's important to note that these are people with causes directly tied to weight and weight loss. For many, many others, weight loss or weight gain has no effect on the whooshing. I know because I receive many emails from patients who have lost the weight at their doctor's direction, but they haven't lost the whoosh. If your doctor implies that weight could be a factor in your case, ask why. Can s/he explain the hypothesis? If so, that's great and maybe losing weight really will provide relief.

I'm not suggesting that weight never provides a clue; I'm just suggesting, from the many, many stories I've heard from patients around the world, that weight is sometimes a wild card that turns out to have no effect on the whooshing. 

And let's not forget about the "skinny-mini" whooshers, as I call them... the people who were underweight when they began whooshing. Or normal weight. For all the attention that overweight people get, members of community who are underweight are often left in the dust. Sure, it's not a patient's favorite day when anyone tells them to lose weight, but if you're skinny or "normal" weight, you may leave the doctor's office with no suggestion to try. I'm not sure which is worse.  

It's also worth mentioning that there are some conditions that have been linked to weight in some patients but not others. Intracranial Hypertension (IH) is a perfect example. It is a myth that IH affects only overweight patients. Some IH patients are overweight and some are not. Some IH patients who are overweight do find that losing weight helps the whooshing. Others do not. Obviously, there are questions left to be answered about pulsatile tinnitus, and even a diagnosis may bring more questions than answers.

Uncertainty. That's why polls like this are so telling; I think this question should be researched more among doctors, our cases studied more closely on this precise issue. A vast majority of those who answered stated that they'd neither gained or lost a significant amount of weight when their whooshing began. Were they overweight before the whooshing started? Maybe. Might they have different ideas of what "significant" weight means? Probably. But aren't these interesting questions? Shouldn't doctors be exploring the answers before telling a pulsatile tinnitus patient to lose weight to stop the whooshing? 

I think so.  

Granted, this is not a scientific poll. It's just a window, a view into our community, and sometimes that window gets an extra vote here or there. And sometimes people are not ready to admit they have an issue with their weight, even when responding anonymously to a poll like this, so I appreciate that the answers here may be skewed a bit for that reason. However, this poll collected votes over the course of several months. There were almost 300 responses, and almost 30 people responded with their own personal answers, most to specifically acknowledge that there were other factors -besides weight- that very well may have played into the onset of their pulsatile tinnitus.

The topic of weight and whooshing is a recurring one in online support groups and in communications I receive from whooshers all over the world, so I think this is a window worth peeking into and maybe even opening, to see what's on the other side. Scientific or not, I know that pulsatile tinnitus is a symptom that affects men and women and children of all sizes, shapes, and ages.

The question was:

"Did Your Whooshing Begin After You Either Gained Or Lost A Significant Amount Of Weight?"

Yes, my whooshing started after I gained significant weight. 50 Votes  16.8%

Yes, my whooshing started after I lost significant weight.  28 Votes  9.4%

No, when my whooshing started I had neither lost nor gained significant weight.  191 votes  64.1%

Other: 29 Votes 9.7%

Here are some of the "Other" comments:

Thanks for voting! Please participate in the latest Whooshers.com poll on our homepage. And you can always see the dozens of other polls we've posted and their results on our Polls page.  

-WhooshEr

Last week was my 4th Whoosherversary - the anniversary of the day my whoosh began.  I've written about previous Whoosherversary 3, Whoosherversary 2 and Whoosherversary 1.  And in that first year, the months seemed like years, so I occasionally wrote about the monthly Whoosherversaries. 

Thanks to all of you for your stories of support and hope!  We've come a long way in four years.  

-WhooshEr