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Old 06-29-2010, 01:04 AM #11
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I stopped listening to music ages ago. It was only that someone on here told me about the Auditory Szs after I described what was happening to me that I found out what it was. It's really bad here in Oz though because there's less than a fraction the work done on researching epilepsy as in the US. My doctor thought I was making my seizures up and he didn't believe me. I stopped going to him. I just really don't think I need any help in feeling bad for being epileptic and mentally ill

Rhia
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Old 07-01-2010, 02:54 PM #12
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It's nice to see you Rhiannon

that's right you don't need to be sick, and then get kicked around for it by a doctor to boot. i also do not live in the US and it is hard to find understanding docs here. try another one, and then another if need be. there has *got* to be a good doctor who is willing to listen to you and help you! don't give up! you deserve proper medical care, but also respect and kindness.

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Old 07-01-2010, 06:17 PM #13
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Waves!

So good to see you around! I think some doctors just can't see outside the square and outside what they are taught. And are even scared to write down sypmtoms and show them to a neurologist for fear of being ridiculed themselves...seems some educating is in order...I may get involved with the epilepsy association here & see if I can do anything...

Cheers



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Old 07-02-2010, 06:56 AM #14
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Quote:
Originally Posted by RhiannonsMoon View Post
I may get involved with the epilepsy association here & see if I can do anything...
sounds like a wonderful idea! they may even be able to recommend some more 'enlightened' docs to you!

i know that doctors here are also resistant to change and do not seem to grow with the field. which is scary.

makes ya wonder if any are out there still trying to cure blood disorders with leeches...



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Old 07-03-2010, 12:16 AM #15
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Quote:
Originally Posted by Oriana View Post
Does anyone else on these boards avoid listening to music? Do you avoid it all the time or just occasionally? Are there types of music you are able to listen to more than others? What instruments (including voice) do you like or avoid?

I ask this because I have gradually stopped listening to any and all music. I had musical training, sang and played in groups, and used to love being awash in a musical environment.

I am wondering if anyone else here with epilepsy has a similar aversion.

*Very* seldom I have gotten a craving for music (really, it is like a craving!) which has included Renaissance choral music, techno, and harmonic overtones singing. Once the craving subsides, then I must have my silence back.
I am from a very musical background and have always loved all kinds of music. My family history is part of the Smithsonian Instute, I will listen to music when someone else is playing it butt when I am alone I want no part of it! This is very unusual for me as it's alwyas been a part of my life. I don't understand why I can't listen to it when I'm alone? If I drive 5 or 9 hours in my truck I play conthing and want nothing but silence. Wonder why this is?
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Old 07-06-2010, 09:11 PM #16
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Originally Posted by waves View Post
makes ya wonder if any are out there still trying to cure blood disorders with leeches...



~ waves ~

HAHAH! They told me the leeches were NEW!

I think we can get change if we can get Neuros and NeuroPsychs to frequent this board and the forums or even get their research staff to research information on epilepsy and other illnesses.

I've been doing some researching looking and documenting who is on how many forums and what range of symptoms they have (no names or other identifying information is used); it's just a graph of the range of symptoms.

The amount of information on these boards for those doing their Degree/s is so vast and so helpful. I love it because it gives so many options on treatment by looking at what affects people and how it affects them; it maintains their privacy but allows for an information highway on epilepsy and many other ilnesses.

Anyhoo really great to see you Waves...I mean that

Rhian
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Old 07-06-2010, 09:21 PM #17
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Originally Posted by SusieQz View Post
I don't understand why I can't listen to it when I'm alone? If I drive 5 or 9 hours in my truck I play conthing and want nothing but silence. Wonder why this is?
Hey SusieQz

I think you will find it is because when there is someone else there you are distracted and don't fall into the hypnotic beat which most music has (except rap which isn't music it's trash talk to dhuff dhuff sounds).

If there is someone there you are more likely to be in conversation than drawn into the music. There are so many accidents involving 17-24 yr old males because of their very loud dhuff dhuff music in their toy cars and they are unable to pay attention to anything but batting their heads up and down to the noise in their cars.

There were some here on the weekend at the surf club the noise was intolerable and when my partner went out on Monday there was a dead Wallaby (small kangaroo), on the road; that has never happened here before ever and it shows the fact that they can't focus on anything but their music.

Poor Wallaby hope it didn't have a joey in the pouch

Rhian
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Old 07-19-2010, 10:13 PM #18
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Oh that is so sad... about the wallaby.

SuzieQz

I bet Rhian is right on about ending up focused on the music when you are alone vs. distracted by conversation - or even other noises - when others are around. i am sorry you can't appreciate music ... i am also in difficulty with it sometimes due to migraines. it sucks.

Rhian

yes the forums are an immense resource. although one does have to be careful with anecdotal reports on how a med affects someone - folks don't always interpret things correctly and and may make assumptions. for instance when people report weight gain... well golly who's to know if they're eating more or what else could be going on... but yes in general i agree. i am so glad you are around again too.

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