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Thankyou evryone for the helpful info - it's a real concern for me.

Katybug - well originally they diagnosed vestibular migraine - which I am only on 10mg propranolol at this stage. I am convinced it's this and the POTS, then the separate spinning vertigo.

I didn't know so many had similar visual probs to me - it's unreal! The dark makes me worse, patterns eg carpets, looking at books - trying to read!!!! Even typing this.

Naomi - yes, I agree with you. The vestibular system is just nasty. It's definitely changed.

Thankyou all again xxx

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My daughter has claimed to have super hearing. She always says "huh? to us when she should be able to here us. I was planning to take her to ENT to get some specialized ear plugs as she gets severe migraines that last for days that are triggered by the noise. She could not go into pep rallys, watch science videos at school or attend church services as it was all too loud for her. She goes to a special room while in church as we are very active there. Today, the noise level was very quiet as the speakers were not adjusted properly. I though she would be okay and insisted she stay in the sanctuary. She ended up with another migraine. I allowed her to leave, but it was too late. I am so glad you posted about this, I now know that it is all valid. Forgive me, its not that I don't believe her, it is just a lot to take in sometimes. She is on propranolol which helps a lot, but if we can get the ear plugs and some headphones to drown out some of the noise, I hope she can participate more. It then becomes an issue of everyone seeing headphones on her. With this condition it doesn't matter how hard you try, you just can't win.

Thanks for the information, Carol! And, yes, the hyperacusis is very annoying...I never realized how much background noise there is in the world until now. And, the "white noise" machines in offices and stores are like nails on a chalk board! But, the rest of the world doesn't know it because they can't hear it. It's weird! :rolleyes: It also makes it seem to others, at times, like I have a hearing loss problem because when people talk to me, I sometimes have to ask them to repeat themselves even though I am clearly paying attention to them. It's because the background noise is so loud for me that it becomes hard to focus on hearing just the person who is speaking. It turns out having super-powers isn't all it's cracked up to be! :lol:

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TLC's Mom,

Sorry she is dealing with this. Just so you know, treating my migraines has helped my visual disturbances but has not made a big impact on my hearing/ear issues. Although, it is easier to deal with these symptoms when you do not have the pain of a severe migraine in addition. As a severe migraine sufferer, I can not tell you how much better my quality of life is now that we have found a good profilactic treatment and a good acute treatment. I have a mild migraine tonight and it is the first one I've had in a month. I was having them 3-4x/wk prior to this drug regimen.

Hope you can find some things that work for your daughter. It is a lot to take in. Sometimes I can't even take it all in and its happening to me.

Katie

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I noticed that after i had an MRI, my vertigo was better for a few hours. Could the vibrations have cleared something? Maybe it was all in my imagination, who knows. I definitely think the ear thing has a relationship with dys. I find the longer i try to stand the worse the vertigo is.

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TLC's mom,

If you get small foam earplugs and insert them well, with long hair over them, they aren't that noticeable. The other potential issue with using earplugs or headphones, though, is that it doesn't help desensitize the person to everyday sound levels - - and the current treatment for hyperacusis (last I checked) is desensitization therapy (systematically helping the person adjust to louder levels of noise). You could ask an audiologist about whether this might be useful to your daughter, but with the triggering of the migraines, that might not work in her case.

This is interesting to me because I have always disliked loud sounds, even as a child, and now that I've recently developed MCAD on top of the POTS, I have found I'm even more bothered by loud sounds (can trigger an episode) so that I was wearing earplugs a lot over the holidays while all the family noisiness was going on, so that I could tolerate being in the room (I have some extended family members who were visiting who have especially loud voices, plus the noise of excitement from the kids). With the earplugs, it was tolerable and I could still hear everything going on, so maybe worth trying for your daughter.

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We have tried all the ear plugs on the market, but none of them will stay in her ears, she has very small ear canals. This is why we are wanting to try the custom made. Ooh, I am so afraid of desensitization therapy, I am afraid she would have a migraine that would last a month long. When in church this weekend, to me the sanctuary noise level was at its lowest ever, it was very soft, but for her it was excruciating. She even talks softly.

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Wow! All of this is so interesting to me. My daughter was 10 when she started to have lots of ear issues. For the next 7 months, she had frequent problems with ear infections, sinus, and stuffiness, ears popping. She then got POTS. At the beginning of 2010, her symptoms were improving. She went through vestibular therapy to get her upright again and for 13 months, she was back to normal. Since October, she's had a POTS crash and now she's been complaining to me about her ears again. She's had so many migraines, even worse than a few years ago and I'm wondering if the headaches are more sinus-related.

Guess I'm going to have her try something for allergies to see if that makes a difference. It's so frustrating to have many symptoms back again plus some that are worse than before the crash!

Thanks for all the good info on here.

Brenda

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