----- Original Message -----

From: Sue McGuinness

To: adie_syndrome@yahoogroups.com

Sent: Saturday, September 18, 2004 2:47 PM

Subject: Re: [adie_syndrome] pain

Michaela

I was first diagnosed with Adies about 7 years ago and what you are describing was exactly what happened to me - it was the pain that took me to the doctor in the first place, and then he said - did you know that your pupil was fully dilated?... The rest is history.  It took a long while for things to calm down, but they did eventually, I felt that I would live on painkillers forever.  Now I have Adies in the other eye too.

Reading all the emails from everyone in the group it seems to me that we all experience Adies in different ways, intensity varies, and although lifestyle etc must have an effect it's impossible to put us in a specific category! 

For example, I suffer from Menieres - does anyone else have this on their list?

Best wishes Michaela, and keep trying until you find something that works for you!

Sue x

michaela_rees <michaela_rees@...> wrote:

Hi to all
I have had adies for 20 months now and ever since it came i have had
eye and head pain due to the light, all light effects it, the
brighter the light is the worse the pain gets, i do wear sunglasses
and a cap but i still get the pain.
My house lights are all on dimmers and turned down low, my family
have to go around the house almost in the dark.
I thought it would of eased off by now but it is still going strong.
It is realy effected my life and i can not go into shops or peoples
homes and the brightness of  telly and computor all have to be turned
down but still cause soom pain.
I don't know what to do it is making me feel ill, they say that adies
does not cause pain so i don't understand why i have it so bad and i
never had pain in my eye or headaches before my eye dilated.
I don't now how to get the pain under control and the doctor does't
seem to know how to help me, he has never seen this before, and the
eye doctor has never seen anyone with the pain from adies, i need
soom answers to why i am suffering so much and to get some pain
relief.  
Has anyone suffered like this from adies and what have you found
helpfull?.
I know i have been down this road before, and i am sorry to pester
you all again about my pain, i know most of you don't have pain so i
do feel alone with this not knowing why i am getting constant pain
and when the doctors say they don't understand why i am in pain.
Can any of you suggest anything that i should or can do.
please reply if you can think of anything.
regards to all
Michaela     





 

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