The Hyperacusis Network Message Board

Neurontin Probably caused my hyperacusis

jc — Wed, 18 Nov 2009 21:36:22 GMT

Hi Everyone -
First I'd like to say that I'm so happy to have found this resource and thankful to those who run and contribute to it.

I'm a 31 year old female. I was prescribed Neurontin (gabapentin) for a neuropathic pain problem in September 2009 - I have a dislocated tailbone which sits on a nerve. 5 days after taking a dose of 300mg of Neurontin 2x a day, I started having all sorts of problems - pain in my joints, TMJ and tooth pain, double vision and parasthesia. While on the medication, I also experienced sensitivity to sound, but it wasn't that severe yet. Because of the myriad of problems, I started tapering off Neurontin. A week after the Neurontin taper (october 11), I woke up with terrible Hyperacusis and Tinnitus in my left ear. I also had ear fullness, headaches and had become hypersensitive to light. I live in NYC on one of the busiest and loudest intersections. My boyfriend hung a blanket over the window to dampen the sound and darken my room. I cried when i heard traffic and cried when the man who lives in the apartment above me decided to use a hammer drill to install venetian blinds. At one point, my boyfriend placed a soup bowl on a desk - it sounded so loud to me and made both of my ears ring (the left always rings now and the right ear rings upon aggravation). We started eating with plastic cutlery and my boyfriend watched TV with captions and no sound. I couldn't even stand to be around the TV because of the buzz coming from the electronics. I couldn't sleep well because everytime i rolled over the bed would creak and hurt my ears. I felt like there were needles in my ears. If i went outside, I wore earplugs and construction earmuffs because NYC is so damn loud, even if you don't have hyperacusis.

I booked an appointment with a ENT. I had a hearing test, but the audiologist didn't want to test my LDLs because she was afraid she was going to hurt me. My hearing test showed the my hearing was good so recruitment was rulled out and my ENT told me i had hyperacusis.

I spoke ad naseum with my Neurologist who's pretty tired of me at this point. I was tested for all sorts of things - MS, Lupus, lyme - because she didn't think that Neurontin would do this to me. I was put on two short courses of prednisone to help with the joint pain and TMJ. The prednisone helped with the joint pain, but not much with the TMJ, tinnitus or hyperacusis. A few times since this happened in October, I would have good days where i was less senstitive, but then i would wake up the next day and my ears would be sensitive again. But i'm happy to say that in the last week and a half i've had major improvement. I can watch TV with sound, I can tolerate the ambient sound of traffic from my apartment. I've started to eat with silverware again. When i go out, i still wear earplugs (unless i'm in the park), but don't wear earmuff unless i have to go in the subway. My ears are more sensitive in the morning and seem to habituate throughout the day. I try not to protect them too much as i know this is bad.

I hope my ears continue to improve more on their own. I figure that when i reach a plateau, i will try TRT, but for now, i want to see if they can recover more on their own. My eyes are still problematic - street lights look like they have lenses on them and red and white lights make my eyes go unfocused. I also continue to have other neurogical problems that I believe were brought on by Neurontin. I hope that with time, by body will recover.

I've seen that Neurontin can help some people with hyperacusis, but it did the opposite for me. My body reacted very badly to this drug. I'd love to hear from anyone else who's had neurontin induced hyperacusis.

cheers,
JC

Forum: New Messages

Stepping Out

autisticaplanet — Wed, 18 Nov 2009 02:17:13 GMT

For those of you who follow my blogs regularly, this may come as a bit of a surprise: I have begun to step outside my house. On 11/5, I went with my aunt and mom to look @ an apartment complex that I might move to. Afterward, we went to an out-of-the-way, quiet Victorian Boutique. The next day, I swept my driveway and raked off the ground cover in my front yard. The following week I devised a plan to walk down the main street where there are no houses, just woods, to the intersection that runs past 3 schools. At the time of day I walked, it was 2pm. School is still in session, so no fracas. Also, I know police step up patrol during school hours, so that makes me feel more secure (so does my cell phone and pepper spray!) I have walked twice. I found so many aluminum cans for my collection that I should be cashing them in soon. I also picked up debris along my corner and recycled as much of it as I could. That had to help the road crew who was finishing up fixing the street by not black-topping a candy-bar wrapper into the street. I have, expectantly, had some challenges. An SUV drove by with a Doberman barking at everyone he saw. Even with noise-canceling headphones, the grating I could hear in his bark cut through, but I didn't feel like I was going to fall apart. I had a harder time today, when I tried going inside a jewelry store in a strip mall with my mother to pick up a Christmas present she had laid-away. A mother brought her toddler inside. The boy didn't do anything naughty, but my anxiety shot up to panic level, because the potential was there. He was walking and chattering all over the store. I asked loud enough for all to hear "How often do children come into the store?" All of a sudden, the mother could keep her son from wandering all over and talking so loud. I was ready to hand her one of my "I am a person on the spectrum" cards if her kid screamed. We left and though I was glad I handled myself well, I still felt shaken. I'm just not ready to be confined inside with a child, even if he is not a brat. Though I wonder, if she wasn't doing a bad job of controlling her child, she could have been doing a better one all along. I will say in closing that tolerance and accommodation for autistic individuals in society will have to come from both neurotypicals and the autistic individual, their families and caregivers. Education and sympathy are two top ingredients. You can't sympathize unless you are educated about what something is. You can't properly educate without sympathy (and common sense).
Allison
autisticaplanet
Blog Post From My Autism Speaks Social Networking Page
Some people just want to focus on hating parents while some parents and grandparents focus on bashing adult autistics. When the small-minded people can see past the hate and bashing, then there can be compromise. We live in a selfish culture and people will do and think what they will. As far as obnoxious noise goes, if you have a neighbor who has a dog that barks non-stop, you can try talking to him and/or you can call the police. As for parents of unruly children, we can only learn effective coping strategies like deep breathing, wearing earplugs or noise-canceling headphones w/an mp3 player. We can see a therapist if necessary. We can hand out cards to people who stare at us or make comments. Autism Meltdown Cards are available. You can make your own for hyperacusis, tinnitus, or whatever your diagnosis is. It really is a 2 way street, but you can't MAKE the other person walk.
http://autismspeaksnetwork.ning.com/profiles/blogs/stepping-out
http://www.maapservices.org
Post Script: Autism Speaks is parent-dominated. Say something, anything regarding kids that is less than sticky sweet and the venom spews faster than pea soup from Regan's mouth. I'm thinking about whether I should stay there, or if my attempts to educate are a waste. I'm considering Facebook. Thoughts?

Forum: New Messages

Past to Present: Chain of Events in a Woman's Life With Asperger Syndrome

autisticaplanet — Wed, 18 Nov 2009 01:32:19 GMT

The moment about to be described was one of the last close to "normal" experiences I would experience in my life. Yes, the (undiagnosed) Asperger's and hyperacusis was there, had always been there. I was 13. It was July, 1993. I was on vacation, 2000 miles away from Chicago in Catalina Island, California. I'd come by taxi, airplane and boat (and 2 airports) to be there with my parents. The foghorn blew. Kids screamed while they played on the beach. This brought me to tears at times, but my reaction was much milder. No screams of outrage or fists pounding in blinding rage. We almost did not make this trip. The other night, for the first time in 16 years, I fully understood why. I have a picture of him standing alone on the cliff there. I will explain that it was one of sand pouring, not sifting through in a mad rush to the bottom of the hour glass. 10 months later, his funeral would be held at the First Congregational Church, but one town away from the one he and my mom were married in. He had a balloon on his aorta (the big artery in the heart), and it was filling with blood. By Christmas, 1993, my parents knew, but did not tell me, as they knew the depth and extent of how I worried when I worried about something. When it became time to operate, the surgeon was called away on emergency. Before he could make it to his rescheduled surgery, the balloon burst. Shrinks have told me that my dad's death is the reason I "became" the way I am. I was woken by my mother to hold my dad as he bled to death, gasping for air while my mom spoke to the 911 operator; a strange sense of calm and resoluteness about me. He was "only a little sick" I had told him. The paramedics would take him to the hospital and the doctor would operate and he would come home. People died, but only in other families. At least, not when there were kids left to raise. My 14 year-old self found out different a week later when I again held his still body, saying goodbye, the disruptive, intrusive humming of a fluorescent light above his bed. What right did this object have to be making its presence known? I got the crying over with later on that day. He was a life-time smoker. He tried to get to surgery, which wasn't guaranteed, but it wasn't to be. For 15 years I had accepted this. Then I saw the Catalina pictures the other night. I came across the lone man with the slits for eyes. The bad color. The bravado of a smile peeking past the pain. A flame burned so hot inside me, I thought I might tear the room apart. It was the middle of the night, but I took the album and went into my mom's room and reopened the case. "Why didn't you find dad another cardiac surgeon?!" I exclaimed, shaking. "Because that isn't how it is done." She exclaimed. There were 2 cardiac surgeons. According to my mom, a nurse at the hospital, a patient couldn't switch over to another surgeon after he had done the work up on the patient. "Why?" I asked, "Its PAPERWORK!" My mom explained that there was more to it than that. A surgeon and a patient built up a relationship before operation. There were exams, tests and check-ups. The other cardiac surgeon stepped in as it turned out, and operated when there was no other cardiac surgeon there. It wasn't elective. It was an emergency.

I was inquisitive, and seeing him out cold in the ICU, I felt bad for him, and at the same time I wanted to see what his wounds looked like. There were many tubes and wires, but I got the gown carefully aside to see nothing that I remember around the heart, but an enormous, oversize coat button sewed not far from his own belly button. Why not another hospital then?" I ask my mother now. "Because it couldn't have been done!" I still don't understand why the paperwork couldn't have been enough to assist another surgeon. "What if he'd been your son, your under-aged son instead of your husband?" I asked. "Would this story, even if it had still ended in death, have taken a different turn?" My dad, it turned out, had had a conversation with my aunt. "I don't know if I have another one in me," He had told her, "I don't want to leave my girls (mom and 2 daughters)." My mom found this out from her sister after my dad's death and told me shortly thereafter. This was a man who had suffered 2 heart-attacks and had been nearly killed, ironically, being hit by a car, trying to help someone who had been in a car accident. It weakened the condition of his gut. My dad also suffered from diverticulitis attacks, an inflammation of the bowel. This happened in amongst the canceled appointment and the aneurysm blow. Hormones make the teen years what they are, but for the autistic teen, newly without her father, a bomb had gone off in my psyche that left a big, gaping hole that was ablaze with live, raw nerves. I've tried to escape from that hole so many times. I often wonder if I would have become as sensitive with the hyperacusis, phobic, distrusting without that continued strong paternal guidance that I still seek out in men, and admire. I am not minimizing my maternal influence. The strength, grace and companionship of my mother and how my dad's death transformed her into head of household and caregiver to a very disturbed, at times, violent teenager (on psych meds prescribed by a shrink with half-open ears). She had to do all of the figuring out not only on stuff like tax forms, but on reading up about a condition she had fleetingly heard of once, long ago (infantile autism?) and find out how or if that applied to what her daughter was facing. This was the mid 1990's, not the 1960's. She is still here today, battling a chronic lung-condition she discovered in 2004 when she bled out her mouth called MAC. She also has chronic bronchitis. Still, she doesn't sit withered in the corner. She gardens the acre of land she and my dad bought 40 years ago. She does the grocery shopping. She still absorbs many of my tears, but hugs as well. Sometimes I can feel the both of them in a single phrase or gesture. Those were and are the parents I was and am fortunate enough to have. Not all stories have happy endings. I think most end somewhere in the middle. I hope I am that fortunate at the end of my days. I've had my fill of the peripheral!

Re-posted From My Autism Speaks Social Networking Page

http://autismspeaksnetwork.ning.com/profiles/blogs/reopening-the-case-of-frank

Forum: New Messages

How long after starting TRT did you see improvement.

jayhybrid — Tue, 17 Nov 2009 20:42:43 GMT

Just curious. It's been about a month for me. I'm starting to notice some small changes.

Forum: New Messages

facebook

saab1216 — Tue, 17 Nov 2009 15:34:13 GMT

To whom it may concern: I think it would be a great idea to have a Hyperacusis awareness blog posted on facebook.

Forum: Friendly Chat

Returned mail/address clarifications

DanMalcore — Sun, 15 Nov 2009 19:50:48 GMT

When requesting materials from the network it is important to provide clear-to-read concise addresses. Sometimes it is so difficult to read hand printed addresses. If possible type your address or include a preprinted return address label on your correspondence.

Currently on my desk I have returned package that was mailed September 25 to Western Australia from David Smith. It took a month and a half to get back to me. This is so unfortunate as it cost $4.80 just to send it out. David, if you see this please email your complete address to earhelp@yahoo.com

Also Chun Nan Wu from Taiwan it is difficult to read your complete hand written address. Email me with an address clarification if possible. Otherwise I will send it out by cutting out your hand written address and taping it to the package.

Thank you...

Dan

Forum: New Messages

is my earmold open enough?

RJ — Sat, 14 Nov 2009 18:47:09 GMT

I got an open earmold last Friday, but I have doubts whether it is open enough, partly due to the fact that I hear the sounds a bit softer when I have my WSG's in my ear (power off) this is how it looks like, I'm sorry for the bad quality

Is this a good open earmold, or is there a better way to do it?

thanks in advance,

RJ

Forum: New Messages

Crinkling in Right Ear

mmartinez85 — Sat, 14 Nov 2009 04:22:45 GMT

I've had hyperacusis for over 2 years now. It's mostly healed up now, but about six months ago I noticed something really odd in my right ear - the ear that's affected.

Whenever I expand my right cheek by filling it with air, I hear something in my right ear that sounds like saran wrap crinkling. It's hard to describe the feeling I get when I do this. Sometimes my ear feels relieved and sometimes it feels worse. It's only in the ear with hyperacusis that this happens. I can't get this to happen in my other ear.

I've talked to one ENT about this and he told me it's my tensor tympani muscle and that my right ear is just sensitive. He really couldn't give me any details, but he said that expanding my cheek like that won't hurt it.

Has anyone seen or heard a symptom like this before? I'm tempted to request an MRI so they can see once and for all what's going on. But I'm not even sure if an MRI would pick that up.

Thanks in advance for the help.

Forum: New Messages

Neuromonics

groovybaby — Fri, 13 Nov 2009 19:18:11 GMT

Has anyone tried this with any success?? I've been doing it since August and I don't feel any better. My tinnitus seems louder than ever! I'm not even listeneing to it that loud either.

Forum: New Messages

Season to pick apples

DanMalcore — Fri, 13 Nov 2009 11:38:09 GMT

Turn down your volume and see if you can get as many apples in the bucket as possible.
http://www.ferryhalim.com/orisinal/g2/applegame.htm
Dan

Forum: Friendly Chat

The high- pitched, metallic, screaming noise..

LynnMcLaren — Thur, 12 Nov 2009 21:18:04 GMT

What is the high-pitched metallic screaming noise??
The shrieking and the squeals of metallic anguish.

That article is talking about Bart the wheels and rotating the cars on a regular basis.
But anything on metallic rails can make that kind of noise..
I know they had to replace the tracks of streetcars again expecially after complaints...
that when they updated the rails it made the sounds worse..
Not only the metallic sounds that a person with hyperacusis can hear more then the average person so much better..
But the vibration/shakeing of the street and of the cement and of homes by the tracks, like being in an earthquake/ shake..
But this Hearing Services article is about the "Noise Exposure Inside Bart"..
And all Public Transportation, elevated or underground, which can produce noise levels that are potentially hazardous to our hearing.
How loud is that and what were their finding's on such noise??
Written by an Audiologist that has been in the U.S. Army with expirence in industrial audiology and noise measurement.

Forum: New Messages

New Member: My story

SallyC — Thur, 12 Nov 2009 18:45:03 GMT

My hearing problems

History:

I am a female in my mid 60s. I was first diagnosed with some hearing loss (unilateral) in my 30s, but because I was still functioning fairly well I did not take any action at the time.

By my late 40s the hearing loss in my left ear was considerable, and I had developed constant but not intrusive tinnitus. However, in the early 1990s I developed over a period of a few days to a week a condition of increased and intrusive tinnitus with added hypersensitivity to many everyday sounds paper rustling, wind, banging, loud voices etc. I was sent to an ENT in the U.K. (National Health) and tested. I was found to have a fairly profound hearing loss on the left, but told Id have to wait 6 months to get a hearing aid. Since my real distress was less the hearing loss than the discomfort and isolation associated with the sensitivity to sound I protested and was sent for tinnitus counselling. The tinnitus counsellor suggested a white noise generator, which I used, and the condition gradually diminished and cleared without any further action over the course of a few weeks.

My hearing continued to be impacted, however, and I eventually got a hearing aid for the bad ear, which I did not find helpful. However, recently I have become aware that I do not hear at all well, especially in social settings, so have been visiting an audiologist, and trying various options. My discrimination in the left ear is poor, and a hearing aid on that side actually compounds the problems as I am bombarded with noise which is not understandable. I therefore elected to try an aid in my right ear, which has a mild to moderate loss. I have been adapting fairly well to this until recently.

About 3 weeks ago I noticed a sudden increase in the level and intrusiveness of my tinnitus, with a change in the nature of the tinnitus noises. The hissing, machine in the distance, noises which I was only really aware of in a quiet setting changed to an angry buzzing like a swarm of bees, which came and went, especially with any physical exertion. After a week or two of this increased tinnitus, I had a sudden attach of almost complete hearing loss with distortion of the sounds I could hear. This came and went for a couple of days, and now has settled into a constant racket from the tinnitus (buzzing, humming, hissing and motor noises, mainly in the deaf ear but also to some degree in the better side) with a considerable hearing loss over my normal loss, and hypersensitivity to noise.

All sounds are distorted, with voices sounding like cartoon characters (electronically modified) or like someone who has been on helium gas. Music is all didgeridoos. Voices blare. Many sounds reverberate unpleasantly in my ears, which feel full. If I wear my hearing aid, everyday sounds are unpleasantly, almost painfully loud especially those which are plosive computer keyboard strokes, my husbands loud voice, the rustle of plastic or paper. It feels like being in a tunnel next to a generator, with large trucks roaring past a combination of pressure and sound. Going to the shops is hell the trolleys banging and sudden loud voices and clacking high heels. In a quiet environment the tinnitus is very intrusive and distracting, and even in a noisy one I am aware of the tinnitus. Without my hearing aid I cannot follow even normal voices, and they sound distorted, and I cant function socially at all. I am not sleeping well, both from the annoyance of the tinnitus and from worry and fear for the future. The tinnitus and hearing loss are exacerbated by tiredness.

I have also become aware of how much I utilise sound in interpreting my other senses - like touch so that I feel sort of numb because I cant hear the scritch when I scratch, if you know what I mean. Needless to say the upshot of all this is that I am fairly depressed and I am not usually a depressive person and tearful. I avoid social encounters, and shopping etc. If I do go, I tend to leave my hearing aid out the cacophony is worse than not hearing. My ENT tells me this will pass, and I know from my reading on the web that that is the likelihood, but meanwhile, what is the best way to cope with this?

I live in South Africa, so really out of the way. The only audiologist registered on your forum here is not in the phone book, so have sent an email to her address in the hopes of some advice.

Thanks for listening, SallyC

Forum: New Messages

Tapping/thumping from neighbor

MonkeyDude2009 — Thur, 12 Nov 2009 02:45:42 GMT

Doing a bit better lately. Not wearing earplugs all the time. Can deal with most sounds.

But one thing that drives me absolutely nuts is when people tap/hammer/thump on surfaces in the apartment building. It's not all that loud. But it's just stressing me out big time. I can't quite tell if it's to the side or from above.

I don't want to be the guy who's too sensitive and looks like a kook for complaining.

I'm sure it's worse because it's been happening in the evenings, and I'm tired and stressed and hungry after work. It was happening on Saturday afternoon after I woke up from a nap, and I felt fine. It didn't bother me.

Any advice? These sounds make me so anxious. And I get anxious about confronting people about them too.

Thanks

Forum: New Messages

new member--would like some advice

david — Wed, 11 Nov 2009 19:04:09 GMT

I've been following this board for a number of months and am needing some advice.

I started with very faint tinnitus in April in my right ear. Had everything checked out. I only recently figured out I've had undiagnosed/treated depression/anxiety for years.

Over the last few months after exposure to loud noises (nightclub, loud restaurant and fire alarm), my tinnitus has gotten much worse as has my hyperacusis. The tinnitus is reactive and my LDLs are 65-85. I have some 40dB hearing loss in my right ear. H is moving to the left ear as well.

I started TRT in August, it was working well, but then after going to a loud restaurant, I wasn't able to wear the WNG's. I had them switched out to Pink noise, but that is still too much for my ears. I also have the rice krispie sounds in both ears everytime my jaw moves. No jaw pain. I wasn't sleeping much from May to September and was put on an SSRI and klonopin. Slowly weening of klonopin (down to .25 mg), but, as expected, that seems to be making me more sensitive/susceptible to sound.

Been doing cranial osteopathy...magnesium...B vitamins. Sound enrichment (nature sounds, classical music)....but most everything winds up or kindles the T. Going to a TMJ specialist tomorrow (no jaw pain though).

I'm wondering what treatments have worked for those on this site with reactive tinnitus and hyperacusis that seems to be worsening. I'm avoiding earplugs, but am afraid my 45 minute commute each way in Houston traffic might be hurting the ears.
Thanks for the help!

Forum: New Messages

Computer keyboards

DanMalcore — Tue, 10 Nov 2009 16:24:34 GMT

This is a bit but I have recently torn a muscle in upper forearm. Until this heals it is a challenge typing. Does anyone out there use one an ergonomic keyboard similar to the one shown in this link:

http://www.google.com/products/catalog?q=ergonomic+keyboard&rls=com.microsoft:en-us:IE-SearchBox&oe=UTF-8&sourceid=ie7&rlz=1I7DKUS&um=1&ie=UTF-8&cid=18429458972240329377&ei=4JL5SvXmHIb-NfL03dgK&sa=X&oi=product_catalog_result&ct=image&resnum=4&ved=0CBoQ8gIwAw#

where your hands type in a more natural position. If so, do you like it and was it a big adjustment switching over?

Dan

Forum: New Messages