Guest guest Posted September 7, 2005 Report Share Posted September 7, 2005 Wow, ! It is so insightful to read what you write. Thank you for helping me to understand things better. Also, thanks for yeast and the B12 advice. We're having blood drawn on Saturday so it is good timing. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2005 Report Share Posted September 9, 2005 ....you really should think about writing a book. Seriously...I bet it would help sooo many people! > > > My son was diagnosed as hyperaccusic by two > > different doctors when he was > > younger. We haven't had him re-checked since > > treating this with auditory > > programs but I don't think he'd still have that > > diagnosis. He used to tell us what > > they neighbors were saying from inside their house > > when he was inside our > > house. Be careful what you say if you live next > > door to a hyperaccusic person! > > Gaylen > > > > > > [Non-text portions of this message have been > > removed] > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2005 Report Share Posted September 9, 2005 I wrote my reply before I read Barb's! > > > > > My son was diagnosed as hyperaccusic by two > > > different doctors when he was > > > younger. We haven't had him re-checked since > > > treating this with auditory > > > programs but I don't think he'd still have that > > > diagnosis. He used to tell us what > > > they neighbors were saying from inside their house > > > when he was inside our > > > house. Be careful what you say if you live next > > > door to a hyperaccusic person! > > > Gaylen > > > > > > > > > [Non-text portions of this message have been > > > removed] > > > > > > > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2008 Report Share Posted November 28, 2008 Dear Jennie, I don't think the ringing in my ears has reached the stage of hyperacusis. I don't use ear plugs, but I do use a small box called white noise. Without it neither my husband nor I can sleep. He always keeps one in his luggage so we don't run off and forget it. I hope you can find some relief from this disease, which I understand from the literature is quite rare. I found a network that shares information about hyperacusis,which you may want to look into. It is quite possible that the membership can share information as we do and refer you to a place that would help you get the plugs that you need. I quote some of their information about the group: " It is important to emphasize that hyperacusis patients should never wear ear protection constantly because it will likely deepen their sensitivity to sound and make it harder for them to recover (re-establish their tolerance to sound). " " As a network we have a common goal - to share information on how we can dramatically improve our collapsed tolerance to sound and support one other until a cure is discovered for hyperacusis. We persistently act as an advocate so hyperacusis can be understood by the medical community and disability compensation boards throughout the world. Until that goal is accomplished it is difficult to obtain medical reimbursement for known treatments that improve our condition. " http://www.hyperacusis.net/ (additional information can be found on the links) Blessings, Lottie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2008 Report Share Posted November 28, 2008 >Hi Jenn, I use the foam. They help but not as much as I'd like. I don't push them in very far into my ear, I don't like that feeling. Have never had nausea from them. How much are custom made? I was encouraged when you posted that your ENT said your ears would adjust eventually. I hadn't heard that. I seem to be picking up new side effects the longer I stay on Gleevec. This one is driving me batty. I'm always asking why everyone is screaming. > Hello everyone and Happy Thankgiving! > I was wondering if anyone has hyperacusis and uses ear plugs. My ENT > recommended I buy specially made ones, but of course they aren't > covered under insurance so I've been using the foam ones. I've noticed > when I do, I start to feel nausea. Am I putting them in too far or is > this normal? (Not that any of this is normal.) > Jenn > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2008 Report Share Posted November 28, 2008 Dear Jen, 1. Just two question do you use the ear plugs on airplanes, or do you wear them most of the time? 2. If you wear the ear plugs only on an airplane, are you consuming dairy products before you fly? If you are nauseated does the ear plugs cause vertical too? I know I read something a while back ago on the site, regarding Hyperacusis, however, this didn't quite fit into the on going problems I have experienced since going to 400mgs, while on Gleevec. I know I have severe water that drips and gets clogged in my ears, however, there wasn't a E.N.T., who could help me.... I because so frustrated that I sought the attention of a masseuse and a acupuncture. They gave me Chinese herbs that helps me deal with the water in my ears. When I travel on a plane I always take gum with me or I am eating something like walnuts, pumpkin seeds, dried cherries, or dried cranberries, the chewing alleviates the plugged ears. When I am not in the air, I use the Chinese herbs which was a great relief, for my water dripped ears! I hope this helps you, as I never had a sinus infection, just severe plugged ears with water in them! Dory Doggie ________________________________ From: ets618 <ets618@...> Sent: Friday, November 28, 2008 8:14:20 AM Subject: [ ] Re: Hyperacusis >Hi Jenn, I use the foam. They help but not as much as I'd like. I don't push them in very far into my ear, I don't like that feeling. Have never had nausea from them. How much are custom made? I was encouraged when you posted that your ENT said your ears would adjust eventually. I hadn't heard that. I seem to be picking up new side effects the longer I stay on Gleevec. This one is driving me batty. I'm always asking why everyone is screaming. > Hello everyone and Happy Thankgiving! > I was wondering if anyone has hyperacusis and uses ear plugs. My ENT > recommended I buy specially made ones, but of course they aren't > covered under insurance so I've been using the foam ones. I've noticed > when I do, I start to feel nausea. Am I putting them in too far or is > this normal? (Not that any of this is normal.) > Jenn > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2008 Report Share Posted November 29, 2008 Hello all, I haven't been on an airplane in over a year, but I use the foam ear plugs when I'm at work. I'm a teacher and I have cafeteria duty. (Children are sooooo loud!) I also use them on some highways near me because the wind is painful, even with the windows closed. I have also used them at home when other people in my house are watching tv, or at the movies once. I'm supposed to go see a friend's band play tomorrow, and I'm afraid the ear plugs will get me sick. The cost for personalized ones are $400 and with Christmas coming up, there's no way I can afford them now. I did speak to my onc yesterday and he claims this is not from the Gleevec, but wants to look into it farther. He says if there is a link, he wants to make sure this side effect is noted on the bottle. I also went to Novartis' web site and I couldn't find hyperacusis posted as a side effect. I've responded very well to the Gleevec, and it's only in recent months that I'm getting more side effects come out. I don't know if this is normal after almost 6 years on the meds or I'm going into some sort of depression. I am getting very discouraged and every day that goes by I feel less and less hopeful I'll ever be able to live at least a halfway normal life again. Ok, I'm done complaining and bringing everyone down. Thanks for listening! Jennie ===================== Posted through Grouply, the better way to access your like this one. http://www.grouply.com/?code=post Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2008 Report Share Posted November 30, 2008 Good Afternoon All Ear Plugs I use a super ear plug when flying I also have a Menieres condition so am quite used to vertigo related impacts. I do not have airplane food while travelling but pack my own bag of fruit, nuts etc. I do not take any other medication while flying however suck on barley sugar of ascent and descent Maybe of assistance to you This is a great website http://www.travelcomfortable.com/ I bought my ear plugs from this site and can recommended them. Originally I was looking for ear plugs not for travel but to see if they would cut out the noise of the power drills. Workmen in nearby property are putting up a giant rural shed. Were there for about 3 weeks and were driving me craaaaaazy with the high pitch noise of the drill. My stress levels must of been low at that time as this would not normally worry me. Anyway came across super ear plugs in this travel comfortable site and have used when travelling. Fantastic Could be a great site for all types of travel. Read the link about Motion Sickness and earplugs -I bought the super duper type. Cheers Sue (Aussie) Quote Link to comment Share on other sites More sharing options...
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