*&#@$#& Epilepsy...sigh

I'm sure most of you know I have epilepsy. I have mentioned it before how the city sirens always set off my big seizures. I have it pretty much under control with meds but the sirens always set off a big one. Angie (my foster mom) is here visiting me. I was luckily in my room on my knees packing a suitcase when the sirens started going off. Two times since moving here I have been out with the dogs at noon and landed on my face in the pine needles. The only thing that city hall would tell me is that it is some time during the end of the month. It really pisses me off because they don't have an exact time and day so I can prepare myself with headphones or something. The one sure fire thing I do know is that it is ALWAYS at noon. Well, mom decided to take the dogs out today and didn't ask me to help for whatever reason....thank God! When she heard the sirens she came straight away back inside and she said it was one of the scarier ones she has seen me have in years. I just hate it because it makes me afraid to leave my house in the last week of every month. It does seem that they test them at noon on one of the weekdays in the last week of the month. That's the closest I can narrow it down to. I think all the people with epilepsy in this town should go down to the next town council meeting. I surely can't be the only one who is set off by sirens. Sigh....I'm done ranting. Thanks for listening guys.

Hi Taylor

I am just glad to hear you are ok

can you not give them your mobile number and ask someone in the office to text your just before they are going to test them i mean it wouldent hurt them to do so?

glad to hear your ok i no how shaken up and tired you are after one so dont forget to get yourself some rest / sleep :hugs:

Thanks guys. I don't think they would give me a second thought before setting off the sirens. It really pisses me off. It was a pretty long seizure and I slept the better part of two hours after I cleaned myself up. God, it's so embarrassing because you pee on yourself and stuff. Now I'm all sore from my muscles contracting and tightening the way they do. Ugh!! I feel like shit tonight and I am going on a trip to Orlando, Florida tomorrow and have to pack and junk. Just like any other guy I waited til the last minute to pack so I am not feeling like packing at all. Maybe my mom will help me. lol

I feel your pain. I was knocked to the floor in a Barnes & Noble about 5 years ago with a seizure. After the MRI, Cat Scan and EEG they diagnostic me as epileptic due to a venous angioma in the left hemisphere. I was on meds for about a year but luckily haven't needed them since. I ended up dropping out of school due to the side affects of the meds.

Taylor, I think you SHOULD contact someone regarding this and make sure they understand the ramifications to YOU when they test those alarms....and going to a town hall meeting is not a bad idea...There is no reason that there can't be something put into place for epileptic people to be warned beforehand...and there apparently NEEDS to be....I would get aggressive about it, you shouldn't have to suffer like this, dude....Big Hugs, **Trey**

I agree, they really can't do this to you.

Take care.

Have you thought of contacting your local ACLU office for help? They love getting headlines and government officials hate bad publicity.


Emily Ann

Something close to this happened with my friends Epilepsy, though his was a tornado alarm. (we had one in like 40 years don't know why we even have one.) they test it in the middle of the month. they would not give him a day/time ether. So he sued the city. he won and now they put out when they are doing the test 14 days before and everyday until, and have to alert people via tv and radio 30min and 5 min before setting it off. he got some money too for the 2 hosptal stays.

food for thought.
hopes
keris.

Suggest you go and be in their office the next time they do a test, just so they understand what they're doing to you...:mad:

Some people are just incredibly thoughtless. :Angry3: