I hate having epilepsy!!!

[Taylor105]

I don't usually tell my online friends about it but I have epilepsy. My medication has it pretty much under control except in one tiny situation. Okay, it was actually a big situation. Whenever the city tests its tornado alarms I instantly fall no matter where I am into a seizure. I guess it's because of the high pitch. I don't really understand it though. Well, lucky me. I was walking my dogs when the alarm went off. The next thing I knew I was face down in the pine needles, and very very confused. Amazingly enough my two dogs didn't run away. I live near a highway and that could have been disastrous. When I came to one of my dogs was actually licking my face. They knew something was wrong. Before my meds were under control I would know when one was coming because my dog Van, the guy in my avatar pic, would come near me. He always sensed it. Then I smell something kind of like pencil shavings or oranges and then the next thing I know I'm wherever I fell. But like I said that is all under control now. I was just shocked that the dogs stayed with me until the sirens were over and I was able to finish out the seizure. Most people wouldn't say this but I was glad that noone saw. People freak and want to call an ambulance when they see something like that. I would have been horrified to wake up in some E.R. knowing I have my boxers stuffed. lol I guess it was just my lucky day. My mom is freaked. She told me to call the city and get exact dates on when they are going to test the alarm so that I can be safely inside. I'm supposed to wear this i.d. bracelet that says I have epilepsy but I don't like wearing it so I don't. Maybe I should rethink that. :sad:

[Kieron Andrew]

I'm supposed to wear this i.d. bracelet that says I have epilepsy but I don't like wearing it so I don't. Maybe I should rethink that. :sad:
YESSSS!!! you should seriously rethink that!!

[Julie York]

All I can say is your are a very brave and robust person to be so open and matter-of-fact about your condition. But I think it would be wise to think ahead a little. If you don't want to end up in A+E then wear that bracelet. It might save your life, let alone a little embarrassment.

Also, wouldn't it be a cool thing to know when the sirens go off? You could make a party of it and go...."Hey watch this everyone.......5..4..3..2..1...Errrrrgh!"



(Just kidding sorry.....Made me laugh though.)


Good luck.

[Xaff]

:eek: You have realy great dogs. :thumbsup: I hope you don't feel to bad after an attack(?).

[Shelly Preston]

I would contact them as a matter of urgency

You could have been in the middle of a busy road or worse fall into the road :(

Explain they are putting you danger and see if they can come up with a solution :Angry3:

The braclet is fine for when you collapse but you really need to prevent it or at least make sure you are safe :hugs:

[Taylor105]

Yes thanks everyone for your responses. Actually I do know the day of the month now. I had just forgotten to find out. We recently moved here. I always knew the date in Texas. The only sucky thing is that they can't tell me what time of day. Grrr...if I knew the time of day I could be prepared to put on headphones and crank up my music. And yes, thanks for the compliments on my dogs. The guy in the pic is Van. He is 13 years old and I have had him since he was 5 weeks old. He was with me even during the days that I had to wear a helmet. He has seen his fair share of seizures and he just knows. But as I said, I don't really have them too much anymore. Thank God for good medications and finding the right balance.

[Adam]

yes i would ask them for times of when there going to test it because its a safty thing for you here we get flood warning sirins they sound like old war time ones (its the same one they used to that) and they send letters telling us when there testing them.

the i.d bracelet i think you should wear or at least put a note in your wallet,
i no what you mean though about people wanting to call A n E its because it panics people. I remember when i used to have it as a child people used to panic and i was find well once i woke up haha worse for me was if i hurt myself falling but i am one of the lucky ones i grew out of it when i was 17 (that was my last one) so its been 10 years since i had any problems.

I do feel for you its not nice :hugs:

Dogs tend to sence when there owners are not well and they want to look after you it just goes to show how much your dogs love you the fact that they stayed with you :D

But yes ask for them test dates so you can be indoors the days they test them

[Taylor105]

They said the time of day varies. That it is mostly done in the morning hours. Geez...thanks a lot lady. "shaking head" I didn't hurt myself thank God. I was wearing a wool beanie that came down over my forehead and there was a pretty thick area of pine needles and those things are so soft. I walk my dogs out in this foresty area. I will tell you something kinda humorous now that it is over. As I came to and the cloudiness wore off and my dog was licking my face I noticed that I landed about an inch from a pile of dog shit!! Can you imagine waking up with a face full of crap? lol I was really lucky. Sometimes you have to laugh to keep yourself from crying. I'm glad you outgrew it Adam. It was pretty scary the first time. I went face down and my mom was in the other room and she could hear this rhythmic banging and she came in to see me face down with my head turned to the side, eyes rolled back, blood running out of my mouth because I had bit my tongue. Blood coming out of a gash in my eyebrow because it was a hard floor. Arms curled up in wrists turned in. She freaked! Crying and calling an ambulance. Those were the days. So I ended up in the hospital and that is when they did all these tests and came back with the results. It's something I will have to deal with the rest of my life but it can be treated if you find the right med.

[pocoyo]

Aaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaawwwwwwww Taylor!!!!!!
:( :( *huge huggs*

Poor thing! Omg, when the siren goes off, awww bless.

I'm so glad you have found out what days they test them on now.

And wow... your dogs are so cool :D Good lovely, loyal dogs :happy:

I'm very glad you're ok after your fall as well.

Here's another hug for you *hugg* and please give the dogs a hug and a pat from me too!

:hugs: :love:

[Evert]

Here where I live we have a standard testing time... first monday of the month, 12:00.

So it makes me a little pissed they can't do it there where you live. It's for someones safety you @%!&#$%^, yeah I mean you guys, those behind that desk!!!!:Angry3:

[pocoyo]

:eek: :eek: You have tornado sirens in Holland??!!

[Shelly Preston]

Hi Taylor

:Angry3: I would love to see you turn up to there office

Especially when you say your here to see there reaction, when they cause your collapse. I think it may change there minds

I also wonder if you wrote a letter saying as they can not tell you the approximate time if you get injured due to there actions you will sue them :)

[Evert]

:eek: :eek: You have tornado sirens in Holland??!!

No general alarms, for floods and mainly toxic gasses. We live cloese to Rottterdam, which has a large harbour. So we have an alarm for when something goes wrong with the oil or other toxic shit..

[CaptLex]

Aww Taylor, I'm glad you're okay. I'm glad you got the date, but it's still gonna be a surprise if you don't know the time. That sucks. I want to suggest that if you don't like wearing the bracelet, there may be other stuff you can wear. I used to have a MedicAlert bracelet that I hated wearing (for my diabetes) because it's just plain ugly, but now they have dogtags and I have a black one with red lettering that's much cooler (kind of manly too). Maybe you can get something like that.

P.S. I think your pups deserve a treat. Such good doggies. :happy:

[Kieron Andrew]

I used to have a MedicAlert bracelet that I hated wearing (for my diabetes) because it's just plain ugly, but now they have dogtags and I have a black one with red lettering that's much cooler (kind of manly too). Maybe you can get something like that
http://www.medicalert.org/home/Homegradient.aspx - US site
http://www.stickyj.com/medical-emergency.html - US site
http://www.americanmedical-id.com/home/ - US site
http://www.medicalert.org.uk/online_application/Products.aspx - UK site

yes they have a silver tag actually all sorts of cool things that just look like fashion wear

or if you dont want that they have medical alert cards for your wallet

http://www.medids.com/free-id.php - US site
http://www.medicalert.org.uk/update.asp - UK site

[pocoyo]

Oh yeah i forgot to say, yes please do wear a thing saying you have epilepsy dude, that's very important!

[Tamara Croft]

Wow, what jerks.... you should go sit in their office on the day they do this test... and see if they still can't give you the bloody times... ignorant idiots :Angry3:

And aren't dogs just amazing animals, to stay with you the whole time, that's just awesome :hugs:

And one more thing... :slap: that I.D. bracelet is there for a reason... :kickbutt: you should be definitely wearing it, just incase you do end up in the ER, they will know, instead of trying to figure out why you suddenly collapsed in the street!!! Get it on already :spank:

[Kieron Andrew]

And one more thing... :slap: that I.D. bracelet is there for a reason... :kickbutt: you should be definetaly wearing it, just incase you do end up in the ER, they will know, instead of trying to figure out why you suddenly collapsed in the street!!! Get it on already :spank:
Tamara has spoken....id get it dude or an ID card if u really dont want to be wearing anything, she'll whoop ur butt otherwise lol

i mean what if you were out, you had a seizure and you banged your head and couldnt remember anything *ok its a worse case senario but it could happen*

[bi_weird]

Oh man, Taylor, that has to suck. How scary that must be.
I really have to get to cleaning, so I'm going to add here to all the other threads about bad days my sympathy and hugs!

[Question Mark]

Gack, that sucks. Your dogs are sweet, though. Dogs tend to be more loving and faithful than cats.

[kerrianna]

aw Taylor :hugs: :hugs: :hugs:

and here's some for your wonderful loyal companions :hugs: :hugs:

Thank God for Dog.

Please do wear the bracelet. For one thing poor old Van won't have to explain to the medics - he could just point a paw to the bracelet. Dogs hate having to explain things.

I'm glad you weren't hurt...or worse! And that your dogs are so smart. LOL, at least you have a good sense of humour about things. Waking up in ER knowing your boxers are stuffed. :p Of course, they've probably seen it all in ER.

Take care of yourself Taylor. :hugs: :love:

[Xaff]

No general alarms, for floods and mainly toxic gasses. We live cloese to Rottterdam, which has a large harbour. So we have an alarm for when something goes wrong with the oil or other toxic shit..

Treu. Every time the alarm goes of and it's not 12.00 on the first monday of the month then: Close windows and doors and go back inside. And turn your tv/radio on. Yep.

Pocoyo: The last tornado in this country was around 30 years ago. (My mom has seen it though.) So the sirenes are more to warn you for idd toxic gas or airattacks (for if somewhan would attack us)

[Taylor105]

WOW!! I had no idea I was going to get a response like this one. Thanks for the links Kieron. I think I may go for the dog tags. Those look pretty trendy. I better get on ordering it so Tamara doesn't beat my butt!! lol I think another reason I don't usually wear it is because it has my birth name on it and as you all know...it isn't Taylor. I wonder if it would matter if I ordered it with Taylor instead of ...well my other name. All of my picture i.d. in my wallet has my birth name on it too. So I was wondering if it would be easier to just wear the dumb necklace with my birth name on it. I don't want to but I may have to. I mean it is a safety issue for sure. I'm just an idiot.

[Xaff]

WOW!! I had no idea I was going to get a response like this one. Thanks for the links Kieron. I think I may go for the dog tags. Those look pretty trendy. I better get on ordering it so Tamara doesn't beat my butt!! lol I think another reason I don't usually wear it is because it has my birth name on it and as you all know...it isn't Taylor. I wonder if it would matter if I ordered it with Taylor instead of ...well my other name. All of my picture i.d. in my wallet has my birth name on it too. So I was wondering if it would be easier to just wear the dumb necklace with my birth name on it. I don't want to but I may have to. I mean it is a safety issue for sure. I'm just an idiot.

Are these dog tags? Link: https://www.idhanger.nl/ If it is. These are very cool in the Netherlands. A couple of months ago it was a hot item to have. Everyone had them. My friends and I ordered those too. We wrote down our internet namen, bloodgroup, birthdate and country. They are very cool. So don't botter about them being not trendy. :D

[Taylor105]

Yep, those are dog tags. I would only have one prob with those. I am allergic to any metal that isn't real silver or gold. I have to wear hemp if I want to wear necklaces because I am too cheap to buy real silver. lol I'll never forget the time I realized I was allergic to plain metal. I had one of those necklaces that had all those balls of metal....kinda like large ball bearings...and I wore it overnight and the next day I had all these red itchy, painful welts all around my neck!! I'm more than likely going to go ahead with a medical card in the wallet and maybe a bracelet only for the times that I will be outside my home. Thanks for all the comments. I really appreciate you guys!

[Kieron Andrew]

I'm more than likely going to go ahead with a medical card in the wallet and maybe a bracelet only for the times that I will be outside my home. Thanks for all the comments. I really appreciate you guys!
like i said if you get problems wearing jewellery or you just dont want to, you can carry a card.....one of the links in my post shows you them

[Taylor105]

Thanks Kieron. I truly appreciate you. You are always the king of awesome links!! :)

[Dasein9]

I'm glad you're okay, Taylor. Your comment about the poo made me laugh out loud!

Now, for the tags... How about your legal name, with "Taylor" in quotation marks in the middle-name spot. Then they won't just think you're wearing the tags for fun, but will know what to call you.

And the black tags are coated with something. So you could use a silk or hemp necklace part, and the metal probably won't touch you.

As for waking up in the ER with a packy... well, c'mon! The folks who work in the ER have a tough job. Would you really begrudge them a laugh? (As long as it's at the packy, and not at you, that is!)

[Tamera]

Hi Taylor,
1. Yes! do wear a bracelet telling people of your illness, with possibly a phone number to call.
2. If you haven't done it yet, the internet is very informative of your illness and questions you may have.
3. If I saw someone having an attack my 1st reaction would be to call 911 for I would not know what to do either.
4. I have heard stories that dogs do have that since before one has an attack. Your dog will be your "BESTEST FRIEND".

Good Luck
LOL
Tamera

[CaptLex]

I am allergic to any metal that isn't real silver or gold.
Taylor,

I almost forgot: MedicAlert also has "sports bands" that are cloth with the metal emblem on the top, where it wouldn't touch your wrist. They come in all kinds of funky colors too. Check it out: http://medicalert.org/home/HomeCatalog.aspx?Catalog=Sports

[Tristan]

Taylor,

ER doctors truly do see it all. I'm sure your packy won't be as big of a deal to them after some of the things they've had to help pple remove from certain body parts. Sides odds are after you get out of the er you will never again see those people and I doubt that putting you were packing is worthy of any mention in their notes on you, but I can understand why you'd be mortified - I honestly probably would be too.

[Eva Diva]

Just guessing here, but I would think that under the Americans With Disabilities Act they would have to make reasonable accomodations for your condition - like telling you when the alarm will sound. I would seriously suggest looking into an advocacy group - there are plenty around - that would help you if they try to sandbag you. You're a perfectly healthy person, minding your own business, until they set off their damn alarm, so they are definitely responsible for your problem. All you need is the ability to call them the morning of the test to get the time - seems like a reasonable request to me.

[mylitta]

Just guessing here, but I would think that under the Americans With Disabilities Act they would have to make reasonable accomodations for your condition - like telling you when the alarm will sound. I would seriously suggest looking into an advocacy group - there are plenty around - that would help you if they try to sandbag you. You're a perfectly healthy person, minding your own business, until they set off their damn alarm, so they are definitely responsible for your problem. All you need is the ability to call them the morning of the test to get the time - seems like a reasonable request to me.

I would agree with that- in the Uk organisations have to make 'reasonable adjustments' and usually the US is ahead of us on that. It certainly seems unreasonable that there is no way of warning you when the siren could be putting your life at risk.

[Dasein9]

Not to mention, if you drive it could be a public safety issue.

[Wendy me]

Taylor my son has epilepsy when he was stressed out over it i told him things could be worse he could be termly ill and things would work out for him ... today he is the head chef at a up scale restraint ... hang in there things seam upsetting but have a way of working them selfs out if you give them a chance ... i got a feeling your going to do ok....

[Taylor105]

Das....I laughed a bit about the dog poop thing too. That is after I got back inside my house. lol I have a pretty wicked sense of humor but I don't know if I could laugh about the E.R docs seeing my packy. I think I would turn red to the very roots of my hair!!

Tamera...thanks for the comment. I have actually been epileptic for a long time and pretty much know as much as I need to know. And yes, my dogs are awesome. :)

Capt...Thanks so much for that link. There are some awesome bracelets on there. I think I am going to go ahead and order one of those!!

Tristan....I live in a small town and with my luck the next time I got sick (which is pretty often) I would run into the same staff at the hospital. lol

Eva Diva....I am going to give them a call again. I don't think it's fair that there is a day where I am basically trapped in my home with music blaring all day to try to cover up that damned alarm when it goes off. You know what the scary part is? If there ever is any tornados and I am home alone! So much for getting into a safe place. I would do a face plant where I stood. Yikes!!

Wendy....I have been living with this illness for a long time and I do thank God every day that it is something that will not kill me and something I can have controlled with meds. It's a shame that a lot of people, myself included feel a need to hide it like a dirty secret. It's not something that we can help. So I guess all in all I feel good that I told you all. Hugs all around!!

[janedoe311]

But it can help http://vrp.com/art/1066.asp?c=1177951409562&k=/det/4861.asp&m=/includes/vrp.css&p=no&s=0

look on the web for research on natural treatments, supplements, herbal for epilepsy. It is a brain chemical imbalance, as is ADD, autism and many other conditions.

[Eva Diva]

Taylor

If you don't get satisfaction when you call them, start calling any epilepsy association or advocacy group you can find - I'm sure you know more than me. Someone will have a legal department that can advocate for you.

[Taylor105]

Yeah thanks y'all. I am actually going to head down to city hall and see if I can find someone who can give me a more definitive time. I mean I can't be the only epileptic in this town who has sirens as a trigger!!