posted
Has anyone found anything to help with severe hyperacusis (sound and other sensory hypersensitivity)?
Mine is SO BAD at this point, and none of the antibiotics have really touched it, in fact it has gotten progressively worse. I am doing IM Rocephin now and have been for almost 8 weeks, but that has not touched it either.
I have to wear earplugs most of the time, and cannot tolerate any sound at all really, including human voices. I have neurological symptoms now from the sound of my own voice, and I cannot listen to any music or audio of any kind (no TV either). It is extremely frustrating.
I have been in a major crash for about five months ago and everything is much worse, including the hyperacusis. But I am ready to try something new.
I have treated for bart and babs as well, though I have taken a break from bart and babs treatment. This all started before the break though, so I don't think it's related to bart or babs.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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Ideally you want something decreases inflammation without decreasing immune system action. Two possibilities are benicar and turmeric. Steroids, like vitamin D found in fish oil, will decrease inflammation by turning down your immune reaction, something generally considered Not Good during an infection.
Boosting serotonin itself might help, but caution is needed because some suggest in lymies it gets converted to the neurotoxin quinolinic acid.
The thing that works best for me is boosting GABA; valerian and the benzo meds will do this. The drawback is I've yet to find any GABA booster for which the body does not develop tolerance/addiction.
Posts: 727 | From USA | Registered: Mar 2006
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Keebler
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Since you were in an auto accident recently, have you been able to get some gentle cranial-sacral therapy?
You might look up the UPLEDGER INSTITUTE's web page to find someone near you. Normaly, anyone trained in this method does NOT do the "snap and crack" approach, but be sure to ask. Clearly, avoid sudden twists as some D.C.s and D.O.s do.
--
You might also need adrenal support and sometimes, hyperacusis can be from adrenal shock that just goes on and on.
Support for your nerve tissue, too, with B-vitamins, krill oil.
I understand about no radio or TV. Same here. However, certain DVDs work. Travel videos are the safest (but, if by GlobeTrekker, their music can shift suddenly and be pretty percussive at times).
You might also need to explore if this is SCD if this is not just regular hyperacusis. There is a link and a short video at this thread:
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links
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[ 05-12-2009, 07:34 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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About GABA, caution is vital as too much can turn to glutamic acid in the brain and can lower seizure threshold for those affected.
Also, if the liver is stressed, GABA may not be properly metabolized and cause adverse effects. Always start very slow and gradually increase when taking this. Any sort of odd feeling and the dose should be brought back down.
People can vary widely as to how GABA affects them. While I am extremely sensitive to even tiny doses, theoretically, it should help and many do find it to do so. Just be careful.
Carol in PA
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Hyperacusis is a symptom of low magnesium.
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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Keebler
Honored Contributor (25K+ posts)
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Carol's point is vital to help decrease the neuro excitability that often goes with hyperacusis (it's not just the ears) - and it may take a while to get magnesium levels up.
Also, from the EAR thread, linked above:
From what I read, it may be that Turmeric, and it's stronger componet, Curcumin, might offer some help to decrease tinnitus and hyperacusis as in both detox and to lower the excitatory NMDA receptors.
Brain Res. 2008 May 19;1210:84-91. Epub 2008 Apr 16. Links
Curcumin protects against glutamate excitotoxicity in rat cerebral cortical neurons by increasing brain-derived neurotrophic factor level and activating TrkB.
posted
I have considered going back on benzos -- I took Klonopin for a long time but had the same tolerance/habituation thing with it. I was never taking a high dose but it took years to get off of it. Maybe I will try it sparingly though.
I do take GABA but I have not found it to help the hyperacusis much for some reason.
I have noticed anti-inflammatories sometimes help so thank you for that reminder and the suggestions.
And thank you for these other suggestions -- I am going to look into everything. I was also injecting magnesium and using magnesium cream for awhile but I haven't been doing that lately so that's a good reminder too.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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posted
I was just reading about SCD too -- very interesting. I don't have the eye stuff, but I have had this: --Case example: a commercial airline pilot complained that on landing, the world would tilt 15 degrees to the side. A CT scan of the temporal bone showed a dehiscence. He indicated that he always had his co-pilot land the plane.--
Not while flying a jet (!) but I used to have this thing where the earth would suddenly seem to tilt to the side and I would go lilting to the left or feel like I was falling toward the wall.
I also feel like my bones are conducting sound, which is a phenomenon in SCD so it's possible.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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posted
My daughter has it really bad...she wears both ear plugs and custom-made noise-cancelling headphones 24/7, she has the light sensitivity too and wears sunglasses as well.
We haven't found any solution, other than keeping the house as quiet as possible, which is hard with other young children in the home Posts: 371 | From CT | Registered: Jun 2008
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Carol in PA
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quote:Originally posted by JKMMC09: My daughter has it really bad...she wears both ear plugs and custom-made noise-cancelling headphones 24/7, she has the light sensitivity too and wears sunglasses as well.
Is she taking magnesium?
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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Marnie
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"The most common treatment for hyperacusis is retraining therapy which uses broadband noise.
Tinnitus Retraining Therapy (TRT), a treatment originally used to treat tinnitus, uses broadband noise to treat hyperacusis.
Pink noise can also be used to treat hyperacusis.
By listening to broadband noise at soft levels for a disciplined period of time each day, patients can rebuild (i.e., re-establish) their tolerances to sound."
posted
What helped me with mine. Eventually it left me after 6 weeks of HBOT at 2.4 ATA two treatments a day in a monoplace chamber while I had a PICC line in getting Claforin. I had maintenance shortly therafter for two weeks
I just read the article on MSNBC about Sue who had late-stage Lyme and committed suicide with Hyperacusis being one of her worst symptoms and I want to tell everyone, it can go away. Mine was pretty bad but eventually it got down to the point where I could use a white noise machine and then nothing at work with barely any cubicle separating my coworkers and I.
Please don't give up if you have it very bad it can go away next time you have an upside in your relapse/remit cycles.
-------------------- RV Posts: 249 | From Healing in USA | Registered: Mar 2005
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Keebler
Honored Contributor (25K+ posts)
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posted
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IMHisda.
Do you have that link from MSNBC about Sue? I searched MSNBC but just the query got no hits.
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Nearly everyday the hyperacucis is what comes close to tipping me over the edge. Of all the symptoms, this is the hardest, by far.
A white noise machine, to me, is like a dozen 747s - and pink noise even triggers seizures. Magnesium is by far the best help and andrographis, too.
I may need to have surgery to plug a hole in an ear bone (SCD). But, I sure hope further addressing lyme will be the key.
Glad to hear that hyperbaric oxygen treatments worked for you. HBOT is very good against lyme. I sure wish all lyme patients had access to it. With your sharing your success, that should help others.
There are MANY causes of hypercusis and they all can't be treated the same way. Some treatments are far too harsh. More links at the tread below.
I'll copy your post over at the this Hearing thread:
i copyied/broke up below for us all..bettyg, iowa activist
All she lost: My sister's battle with Lyme disease
After a decade of unbearable side effects, she decided to end her life Image: Sue dancing with John Sue Baiata, shown dancing with her brother, John, at his 2001 wedding, developed advanced Lyme disease in the years after being bitten by a tick.
One of the side effects she experienced was hyperacusis, a sensitivity to sound so severe that she tried to find a doctor willing to surgically deafen her. View related photos Courtesy of the Baiata family
Hubble team makes tough job look easy Hubble gets last hug: `Good voyage!' Spacewalkers cope with Hubble troubles Surfer saves young kangaroo from drowning Hubble repairmen turn to brute force Most viewed on msnbc.com Obama to unveil big increase in required mpg Feds accuse Wyeth of cheating Medicaid OMG! Teens go 10 days without texting, tech Son's messy room leads to dad's 911 call Cheap countries to see in the recession Most viewed on msnbc.com
By John Baiata
NBC News producer
updated 7:14 a.m. CT, Mon., May 18, 2009
The phone had not even finished its first ring before my wife, Anna, snatched it from its cradle.
Concern was etched in her face as she handed me the receiver: ``It's the police. It's about Sue.''
My stomach dropped. My older sister had disappeared the day before and my family feared for her safety.
``I'm sorry to have to tell you this,'' the police lieutenant said in an even voice, ``but we found your sister dead this afternoon. We have reason to believe it was a suicide. We're here with your mother now.''
I fought the urge to scream as my mind went in a million directions. ``Do not leave my mother by herself,'' I urged the lieutenant over the phone. ``I'll be there in a little more than an hour.''
I lurched outside and clung tightly to the deck railing, while everything else seemed to spin violently around me. Anna grabbed me with both hands. ``What happened?!''
``She really did it this time,`` I said. ``She killed herself.''
In the decade or so before Sue took her own life at age 46 on August 21, 2005, my sister Dawn, my mother and I had become all too familiar with advanced Lyme disease, which had slowly, inexorably diminished Sue's life.
Sometime in the mid 1990s, my sister contracted Lyme disease, likely through being bitten by a deer tick or black-legged tick.
The bacterium that had introduced itself to Sue's bloodstream went undetected, and then was misdiagnosed for the better part of two years.
Identified early, a short course of oral antibiotics will cure the majority of cases of Lyme disease -- more than 27,000 cases were reported in the U.S. in 2007 -- and wipe out the typical symptoms of headaches, fatigue and a circular rash near the area of the bite.
But left untreated, the disease can affect the heart and nervous system, causing joint pain. Sue faced a parade of symptoms including migraines, severe pain in her neck and major joints and staggering exhaustion.
Each one narrowed the prism through which she lived her life.
Sue had to leave her job as a facilities manager to go on disability, and lived with my mother in the Long Island home where we were raised.
On her good days, she would spend hours in the gardens she had lovingly cultivated in the expanse of the backyard.
More than likely it was there too where the tick which bore the disease that would seal her fate attached itself to her.
Q&A Close Up Of An Adult Female And Nymph Tick Is Shown June 15 2001 On A Fingertip Ticks
Lyme disease Learn about the most common tickborne illness in the United States, from symptoms to treatment and prevention.
msnbc.com On her bad days, she would stay in bed with the shades drawn, cuddled with the dog she loved unconditionally, her beloved Chihuahua, Katie.
She would emerge only briefly to have some tea and a bite to eat, and a few words with our mom.
Still, she had accepted what her life had become. On those good days she could still fill the room with laughter.
She would mine the late-night comedians for material but never really needed to. Making people laugh came naturally to her.
Her life became more attuned to the seasons than ever. She knew instinctively how to grow just about anything.
She kept a pair of pruners in her car in case she happened across something that would make its way into one of her many centerpieces.
One fall while driving through a rural part of northern New Jersey, she forced me to pull over to the side of the road, disappearing into a thicket of brush and trees.
She emerged moments later holding a fistful of exotic-looking flowers over her head, grinning ear to ear like she'd just been handed an Oscar.
One Christmas season, in a burst of energy, she decorated the entire house while my mom was at work.
The memory of walking through the front door that day still lights up my mother's face.
The agony of sound Despite what Lyme disease had already taken, it was not done with her.
A crueler, more insidious phase awaited. She began to develop an aversion to noises that had never bothered her before.
Everyday sounds like the closing of a door or the cry of a child would cause her to cringe.
A passing lawn mower or motorcycle would send her running for her room.
The disease's attack on her central nervous system had brought on hyperacusis, a severe sensitivity to sound. And it became progressively worse.
It was as if a volume dial, set on high, had broken off, and everything in her aural experience was overmodulated.
Softer sounds were tolerable. Sharper sounds were not, and painfully so for her.
Image: Sue and her family Courtesy of the Baiata family John Baiata could always count on his sister Sue to offer a listening ear when he needed to talk -- and to introduce him to the latest music. Pictured in this family photo from the 1970s is Sue, far right, John, next to her, their sister Dawn, far left, and mother, Patricia. Hyperacusis, which can be brought on by trauma to the inner ear, is also thought to be a processing problem with the way the brain perceives sound, which seems much more likely in my sister's case.
Dr. Paul Auwaerter, clinical director of infectious diseases at John Hopkins University School of Medicine and a leading specialist on Lyme disease, describes hyperacusis as ``a bit like the old fashioned AM radios.
When you turn the ``gain'' button up you get more stations, but you get a lot more static, too.''
One of the enduring frustrations for my sister, and for those of us who loved her, was the failure of her doctors to recognize what was wrong.
She was misdiagnosed twice in the early stages of the disease -- once with Chronic Fatigue Syndrome, the second time with Epstein-Barr virus.
She was accused of exaggerating her symptoms to avoid work, or inventing them in order to get pain medication.
By the time anyone thought to give her a definitive blood test for Lyme, the disease was on the march.
Patients treated in the early stages -- within about two to four weeks after the onset of symptoms -- usually make a complete recovery.
Not everyone is so fortunate.
``It's hard to put a number on how common misdiagnoses are, but early detection can be difficult," says Auwaerter.
"It takes the body some time to generate enough antibodies to show up in testing, and the symptoms are common to many other ailments.
There's a general sense that if you have the infection longer, you'll have extended symptoms.''
Newsvine discussion: Talk about this story
For those who are diagnosed late and have persistent symptoms, some doctors will prescribe an extended antibiotic regimen.
That is a controversial approach, however, as several studies have shown it not to be an effective strategy.
There is also considerable debate in the medical community and with advocacy groups over some of the symptoms of ``advanced'' or ``persistent'' Lyme disease, like Sue had, and how to treat them.
One theory, based on research studies, suggests that people who suffer from post-Lyme disease symptoms ``may be genetically predisposed to develop an autoimmune response that contributes to their symptoms.''
CONTINUED : 'It's like they're screaming'Sue was determined to deal with the progression of the disease -- and especially the hyperacusis -- on her own terms.
She went on the Internet and did exhaustive research.
She kept in contact with another sufferer of advanced Lyme who lived in New Jersey, comparing notes on their progressive symptoms.
And she ping-ponged from specialist to specialist, desperate to find someone who could help, someone who believed her.
She took to wearing ear-plugs, then sound-proof headphones. But it was akin to spitting in the ocean. It made no discernible difference.
``Sometimes,'' she told me, ``when people are talking to me, even if they're whispering ... it's like they're screaming.''
My mother found her one day in her room, unresponsive and foam coming from her mouth.
A long suicide note was tucked in a dresser drawer. She'd taken a bunch of pain pills from two prescription medications, but would live.
When I arrived at the hospital my mother was outside stealing a cigarette, crying and ashen.
When Sue came to, she was enraged that my mother had intervened.
In the days after, an uncomfortable dynamic followed:
Dawn and I were naturally supportive of my mother, and yet entirely empathetic to my sister's situation.
A common enemy soon emerged, however.
Her doctors wanted her committed to the psychiatric ward.
We argued vehemently that she was not crazy. She was suffering from the advanced stages of a debilitating disease, and had left behind a reasoned, lucid note explaining her actions.
Q&A Close Up Of An Adult Female And Nymph Tick Is Shown June 15 2001 On A Fingertip Ticks
Lyme disease Learn about the most common tickborne illness in the United States, from symptoms to treatment and prevention.
msnbc.com We eventually got her home and struck a wary truce: we would redouble our efforts to help her navigate the maze of health-care providers in search of some relief, and she would simply not give up.
She was sent to a therapist, and placed on medication for depression -- something she had struggled with even before contracting Lyme disease.
In search of a quieter neighborhood without the noises that were agony for Sue, my mom reluctantly put the house up for sale -- the one that held so many memories for all of us, and Sue tore herself away from the gardens she loved.
They moved, and then moved again, finally settling in a 55 and older community that they thought offered the quiet my sister so desperately sought.
The first day the landscapers came by with their torturous weed-wackers, it became clear there would be no silent refuge.
Asking to be made deaf
Sue came to a drastic, but, given the circumstances, reasonable conclusion: she wanted to be surgically deafened.
My sister -- the same one who turned me on to all manner of wonderful music, who liked nothing better than lying on the beach listening to the sounds of the waves and seagulls, for whom peals of laughter were a siren's song -- would rather go deaf than endure any more pain.
Now all she had to do was find a doctor who would do it. No doctor would.
They either did not believe the extent of her pain, felt it was too drastic a measure, or cited the ``do no harm'' tenet of the Hippocratic oath.
The last time I saw my sister alive was on one of her good days, in the summer of 2005.
I had driven out to Long Island on a Saturday, and we spent the day together.
We took a drive, and she asked me what music I was listening to. She could barely stand listening to music anymore, but she still wanted to know what was out there. I played a few tracks for her at the softest volume possible, and she laid her head back and smiled.
Later, we went for a swim and she cracked a few jokes about sharing a pool with a bunch of people 20 and 30 years her senior. Looking back, the day seems impossible. A mirage.
Image: Sue by her jeep Courtesy of the Baiata family Sue Baiata in the late 1990s at a beach on Long Island, one of her favorite places. Later that week, I called to see if it was OK to come out that weekend with my family.
Sue was godmother to my oldest, Alexa, but had yet to meet my son Luke, who at the time was 3 months old.
She wanted desperately to see him -- and I to show him off -- but she was fearful of the noise a crying baby would make.
She urged me to come, and offered to leave the house in order to avoid the noise. I put the visit off again -- a decision I regret to this day.
When my sister attempted suicide the second time, she was determined that there would be no intervention.
Sue was up and dressed early that day in August, and told my mom she was going to the mall.
She called later that day to say she had met a friend and would be home late, not to worry.
Instead, she checked herself into a motel along a busy stretch of New York highway, affixed a bunch of morphine patches to her body, and lay down to die in an empty motel room. There was no note.
I think, in Sue's mind, her actions no longer required an explanation.
In the days following her death, my sister Dawn and I did our best to simultaneously deal with our grief and to support my mother, whose own grief had turned her near catatonic.
The thought of never seeing Sue again, of never touching her or hearing the sound of her voice, was overwhelming.
What was most painful for me was the knowledge that she would not be around to see my children grow.
She'd never again get to spoil her goddaughter. And she had never met my son, Luke.
The day of her funeral, the visitation room was closed to all but immediate family just before her body was to be moved to the church.
I walked in with Luke in my arms, and closed the door behind me. I placed his tiny hands in mine, and pressed them against my sister's casket. ``Sue, this is my beautiful boy, Luke,'' I whispered.
``Luke, meet your wonderful Aunt Sue.''
Newsvine discussion: Talk about this story
I have a favorite picture I keep on my dresser of Sue with her arms wrapped around me on my wedding day.
Her face is lit with undiluted joy. Joy for me. Joy for the moment.
There are times still when my longing to have her back hurts as deeply as the day she left us.
But mostly when I think of her now, I think of all the times, and all of the little ways she expressed that same unbridled passion for life.
My sister fought valiantly against a disease that had diminished the quality of that life to a level that was no longer acceptable to her. It never once diminished her spirit.
Through it all, all she really wanted was relief to her pain, and for someone to believe her story.
John Baiata is a senior editor with NBC News. � 2009 MSNBC Interactive. Reprints
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