Medical Despair Ends in Suicide

http://www.dispatch.com/content/stories/local/2015/05/03/medical-despair-ends-in-suicide.html

 

Medical despair ends in suicide

By Misti CraneThe Columbus Dispatch  •  Sunday May 3, 2015 6:32 AM
SCOTT PARSONS
Brett Helling suffered from “empty-nose syndrome.”
Brett Helling could no longer find solace in the music.

It didn’t touch his soul as it once had, he wrote to his friends and family. It couldn’t rescue him from darkness.

“Nothing feels the same anymore. Nothing feels like anything. It’s like I’m on one side of the river looking at everything across it, but the bridge is out,” Helling wrote before he killed himself in February.

“I think if I could still listen to and make music, I could survive this thing: but without that, I don’t really stand much of a chance.”

Helling had much more that he wanted to do, the 36-year-old told his friends and family. He wanted to crack wise and play badminton, to struggle over the crossword in the Sunday New York Times. He wanted to sleep on his uncle’s couch in California. He wanted to play the guitar with the hand-me-down strap that he left behind for Preston, his nephew.

In the months before he died, Helling became singularly focused on the fallout from what was supposed to be routine sinus surgery. He lived with the constant sensation that he was suffocating, went days with little or no sleep and complained of pain and nasal dryness.

Helling had been miserable after a couple of years of lingering sinus problems, including infections that moved into his ears, and had the surgery in February 2014, said his older brother, Paul.

Helling saw a surgeon with more than two decades of experience and expected relief following what is considered a low-risk procedure, said his mother, Carol.

In rare cases, people who have had sinus surgery — particularly surgery that includes removing bony structures in the nasal cavity called turbinates — experience the sensations that plagued Helling. A Mayo Clinic doctor coined the term “empty-nose syndrome” in 1994 to describe it.

Although some doctors are skeptical, researchers have published several small studies about the syndrome in recent years, and an increasing number of physicians are thinking more seriously about how to explain and avoid the life-altering condition.

Mrs. Helling said her son’s discomfort began last summer and that, by October, he felt he could not breathe.

He saw ear, nose and throat doctors, including his original surgeon, who told him he was healing fine, she said. He was sleepless, having panic attacks and rarely leaving the Hellings’ home in Worthington.

Mrs. Helling said she’d carry his guitar to him sometimes.

“Everybody has something in the world that is their center. He would always go back to the music,” she said.

But he wouldn’t play.

Helling died frustrated that nobody warned him about empty-nose syndrome. He was convinced that there would be no relief.

“My heart still has a lot of music to make and a lot of love to give. I desperately want to get old,” he wrote. But to breathe was, in his words, “Torturous … Absolute hell.”

Empty-nose syndrome is not well understood, and most of what experts know comes from patients’ descriptions.

You can’t see it on an MRI or pinpoint a spot where a surgeon should never tread. Two people could have similar operations, and one might feel great while the other wishes he never went in for surgery.

And there are those who contend it’s psychological.

“Patients hit a lot of roadblocks. Surgeons say they’ve never seen it. No one has any answers for you,” said Dr. David Poetker, an associate professor of rhinology and sinus surgery at the Medical College of Wisconsin. “You can’t measure empty-nose syndrome like you can bone density.”

Poetker is among those who believe that the syndrome is real and that it wreaks havoc physically and emotionally. Patients should hear about the risk before surgery, he said.

There were 606,000 outpatient sinus surgeries and 196,000 turbinate-removal operations in the U.S. in 2006, the most-recent year for which the Centers for Disease Control and Prevention has data.

“It has such a huge psychological and psychiatric impact on somebody’s health,” Poetker said, comparing empty-nose syndrome to tinnitus — chronic ringing in the ears.

The nose’s job is to warm and humidify air, Poetker said. A rich blood supply ensures that happens. When surgeons remove tissue from the turbinates, which are like shelves inside the nasal cavity, they reduce the surface area inhabited by blood vessels and nerves.

Poetker said that’s where things probably go wrong, but he added: “Nobody really knows exactly what’s going on.

“They say that they are unable to breathe through their noses, but their noses are wide open. It’s very paradoxical.”

Poetker said surgeons must balance the potential benefits of getting that tissue out of the way with the potential harm, adding that he’s conservative about removing turbinate tissue.

There’s no good way to figure out who is most likely to have complications, he said, and empty-nose syndrome is hard to study, in large part because it affects relatively few patients.

When his symptoms worsened, Helling saw two Ohio doctors who have taken a particular interest in the syndrome: one in Cleveland, the other in Columbus. Both declined requests for interviews.

Helling praised both doctors but wrote that he left their offices without much hope, other than an expensive and experimental implant surgery that he wasn’t optimistic would help.

In his final words to those he loved, Helling said he was terrified, bitter and self-involved. He said he’d lost his empathy.

Helling spent a week at Ohio State University’s Harding Hospital after a particularly bad spell of sleeplessness in October. After his release, he saw a number of specialists, including mental-health professionals, and tried several medications for depression and anxiety, Mrs. Helling said.

“The psychologist gave him a book on how to cope with your pain,” she said.

Mrs. Helling researched homeopathic treatments, including modified diets and humidifiers, and she sought advice from an online community of people who have empty-nose syndrome.

“Please hold on, we’re going to get more help,” she recalls telling him.

Side effects of the psychiatric medications were a problem; some heightened his anxiety, she said. And the pills didn’t take away the sensation that he was suffocating.

He took each prescription for an average of five to seven days, Mrs. Helling said.

It’s impossible to point to one aspect of a person’s life — a firing, a breakup — when trying to explain suicide, experts say.

But chronic illness can inflame pre-existing mental troubles and lead to new ones, said Jill Harkavy-Friedman, vice president of research for the American Foundation for Suicide Prevention.

Helling had a history of depression, anxiety, obsessive-compulsive disorder and attention deficit, and he “managed it, more or less,” he wrote to his family and friends before he died.

Several of those closest to him characterized Helling’s low points as no more than what you’d expect in times of trouble.

“When your stress system is on alert, that affects your mental health. It affects your sleep, your appetite,” Harkavy-Friedman said.

She stressed that although it might seem as if the suffering won’t ever diminish, “there are things you can do even if it doesn’t take away the condition.”

Routines and tools that give you a sense of control can help, and a good therapist can guide a person to figure out what those might be, she said. Medications can take more than a month to be fully effective, and sometimes it takes awhile to figure out which one, or combination, works.

People with conditions that can’t be measured and aren’t well-understood can feel alienated and dismissed, Harkavy-Friedman said. “Nobody can feel what you’re feeling.”

In his final words, Helling wrote of the support he felt from friends and family, even when the conversation lingered on the same set of complaints.

Helling’s friends said he was at once introspective and a cut-up, someone with a particular talent for developing and maintaining friendships.

In pictures they’ve shared on Facebook, you can see the kind of smile that makes you like a person before he has uttered a word.

In their posts, you learn how much they miss him — at rock shows, when they play albums he gave them, when they drink Bloody Marys that aren’t as good as his.

“He was kind of shy, but the more you got to know him, he could talk your ear off,” said Nick Barger, a friend since kindergarten who played with Helling in the Cabdrivers and the ’80s cover band Fisted Mister. “Music is really where he started finding his own thing.”

But by last fall, “he was just so clouded by what he was experiencing,” said longtime friend Craig Turner.

“It became disturbing and painful for us. The hardest part is there was nothing that could be done. It was very much out of our league as friends and family.”

Eventually, Helling stopped doing the things he loved. He missed work at Natalie’s Coal-Fired Pizza, where he tended bar, and was not spending time with the people he adored. He wasn’t playing the guitar that was like another limb.

“He just totally, totally changed,” said Helling’s dad, Henry.

Brett Helling played in five bands. He played mostly guitar but also was exceptional on bass, said Kyle Sowash of the Columbus band the Kyle Sowashes.

At Sowash’s urging, Helling practiced with the band in early February. They had a special performance coming up, and Sowash wanted him to be part of it.

Although Helling hadn’t been playing for months, “he sounded great. It was like he never put down the bass. But I don’t think that he could hear that. It just wasn’t the same for him.”

A week later, on Feb. 16, they were waiting for him at band practice when they got the call. Helling had jumped off a bridge.

mcrane@dispatch.com

@MistiCrane

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~ by ens3 on May 3, 2015.

4 Responses to “Medical Despair Ends in Suicide”

  1. The Hell that is ENS… my story. Just another nightmare; this nightmare’s not over… yet! (a Recent Letter to Dr. Das) So sad to read about Brett 😦

    I am now 50 years of age; all this start one summer at camp when I was 15 and my life was never to be the same. When I was young, in about 1980 I started to develop primarily a feeling of pressure and fullness in my ears, it sounded loud, distorted, and uncomfortable when I talked. I went to an ENT and somehow was wrongly diagnosed with allergic rhinitis. After a couple sinus lavages, my sinuses were operated on more seriously. The doctor performed a bilateral cryosurgery on my inferior turbinate’s, over the next 3 weeks’ tissue (I believe he called it sluff) died and drained out of my nose. I knew something was wrong right away, I was in a band and sang, and I could not sing anymore; I couldn’t project my voice. I started to notice that cold air really bothered me, whether it was winter or summer in the air conditioning it was hell breathing it; it was terribly painful. I loved to Ski, nothing more beautiful to me than being on the top of a mountain, but it became overwhelming as I would cry going down the mountain due to how cold the air was too me, my emotions overcame me too often and my favorite hobby became a thing of the past. Just one thing, just one loss in the many that would follow. I then I noticed I rarely ever produced any mucous anymore, my nose was always dry and I’d often get nose bleeds, the dryness was unbearable as I have to drink water constantly just to be able to speak; but the worst to come had not hit me yet. I finally got a proper diagnosis for my plugged-up ears, it was called a patulous Eustachian tube dysfunction, in both ears, and almost impossible problem to correct… and after about 10 surgeries, I and the doctors gave up. I don’t believe even today there is much is the way of a cure, It is a horrible problem to live with and the removal of my inferior turbinates’ only made it worse. Proper mucous flow is so important for so many things to happen. It took about 7 or 8 more years for the absolute worse symptom of ENS to occur and when it started I was sure I would soon be dead. I simply could not breath, my nose did not function as a breathing mechanism anymore, and getting a satisfying breath was impossible, as air moves so fast through my wide-open nose it seems like my brain doesn’t even sense the air flow? I don’t ‘feel’ my breath at all through my nose as my brain sends signals to me 24/7/365 that I’m not getting enough air and I feel like I suffocating, or like I’m drowning and I can’t get that initial breath. And with this come the total inability to sleep, the insomnia is incredible… it got so bad I eventually drugging and drinking myself to sleep, I didn’t have a choice; many times I’d go 72 hours or more without sleep then just crash from exhaustion. The sleep was always broken up by my mind waking me reminding me I needed more air, as my initial ‘forced’ nose breathing would always turn into all mouth breathing I’d eventually start gasping for air and wake up. It’s sort of like sleep apnea, which I (once again) was wrongly diagnosed with, this was all coming from the ENS but even a pulmonologist could not come to that reality. But the reality that no amount of oxygen you pumped into my nose is ever gonna make me breath better should be enough proof that I do not have Sleep Apnea; honestly this is much worse. ENS is something, not unlike many horrible disorders, that one can never fully understand the enormity of how devastating it is unless you have it. I believe to this day, Dr. Steven Houser of Ohio is the only doctor I am aware of that over time has come to a more accurate understanding of exactly what ENS is than anyone who doesn’t actually have this disorder. I have never met Dr. Houser, but have contacted him over the years, he has never performed surgery on me but I am actively pursuing his surgical option right now; he’s not the easiest man to get a hold of (Really!). I have dealt with this disorder for over 35 years now, possibly longer than anyone I’m aware of, and I haven’t a clue as to why or how I’m still alive? The Depression, Anxiety, the all out ‘Fear’ that you don’t have a choice, tomorrow’s gonna be the same day all over again, you either live or you die, period! And everything else this does to you mentally has given me absolutely no life at all; I do not want to live this way. I am the only person, and the ENS sufferers will understand this, but I’m am most happy when I’m sick. When I have a cold or an upper repertory infection so many of these symptoms just vanish; but I know it’s only temporary and when it’s over its crushing. I’ve asked my ENT to please inject me with something that can give me a cold, he just laughs, but understands as well as he can. For some reason, I don’t get colds any more, it’s strange but I rarely ever get sick with anything? I’m ready now, for anything, I need help so badly with my breathing as a primary symptom of ENS (oh God and I can’t not mention the insomnia, my God, awful the insomnia…), I’m just once again starting to actively get informed about anything that may be new out there to help this condition, or any doctor that believes it exists and is willing to do something about it. At this point in my life I am more desperate than ever as I am free of drugs and alcohol and I’m feeling life not at all the way I want to experience it. Please contact me Doctor if you would. I wasn’t aware of you or your work with ENS sufferers, I’m very interested in doing something about this. I thank you so much for your time.

    Please, ENS Sufferers feel free to e-mail me at: mjf@arllcorp.com or even phone me at: 518-386-8156. I listen to anything you may have to say!

  2. Turbinate reduction… what a scam to make money from allergies and sinus infections where $30 worth of allergy meds or antibiotics would do.

  3. I am so sorry for your loss. I TO suffer from ENS AND I have had implant and botox and all kinds of treatments. but nothing works. My heart goes out to this family. Godd Bless

  4. Really sad and I can fully understand having dealt with the condition now 30 years.Ive been all over Australia for help in those years and had repeated surgeries to no avail.I battle with pain and blocked nose and have tried everything possible but get very little relief. My only consolation is the first operation only succeeded in destroying the right side (the left side was fixed after the same turbinate surgery) otherwise I would be totally written off. Sleeping is a struggle going to sleep in pain every day and waking up in pain its 24/7 and I have had to remain positive and focus on what I can do and try to keep busy to forget the constant pain.Normal painkillers are useless but I refuse to get addicted to anything heavier just battle on.Some of these medications only make your sense of preservation worse.Good luck to everyone suffering this condition and stay strong.
    Best Regards
    Patrick Henderson Albury/ Wodonga Australia

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