Newsflash...

[randijeanw]

Epilepsy SUCKS. Likewhoa. Really really sucks.

I've had seizures since April 2004, and I thought I had finally come to terms with it. I never have anything but grand mal seizures, but after reading several books and mourning the loss of my non-epileptic self, I really thought I was okay with epilepsy. I was averaging one seizure a year(ish), but then I've had two in the past three weeks.

This past one was at my work. I crashed head-first into a book cart, landing myself with a black eye and stitches in my face. My tongue is killing me, and I can't lift up my left arm. THIS BLOWS.

Maybe I'm just in my post-seizure slump. I always get these. Ever played the Sims? I've always described having a Grand Mal like having all your mood bars of your sim set back to 0. You pee yourself, you get disgustingly dirty with sweat and pee, you sleep for a jillion years, wake up hungry and sore... you get the picture. Now that I'm starting to feel better (minus the injuries) I'm just in this really nasty phase of depression. I'm eager for it to go away. GAH. I just want to cry and hug my family, but I feel guilty for being upset about it. I'm mostly stressed out because I had it at work... I left the office I share with three other people with a puddle of pee and blood. This is so frustrating.

I guess I just needed to vent. I had epilepsy... I hate that I have it, I hate that every single decision I make, I have to consider my epilepsy. I hate that the past two seizures haven't been induced my by my regular triggers (my period, drinking, and not getting enough sleep) and that I can't drive, hang out with my friends (I AM at University), and make decisions based on regular old consequences... not crazy life-altering ones.

THIS SUCKS.

[/vent]

[Bernard]

Hi randijeanw, welcome to the forum.

Yeppers. Stacy has:

• fallen into a doorway frame with her two front teeth taking the brunt of the impact (and shattering)
• fallen sideways and hit her head on a window sill (blood pooling all over the floor from her busted scalp - it was the scariest seizure I had the displeasure to witness) requiring staples in the ER
• fallen down the stairs
• dropped a glass on the tile floor and convulsed on top of the broken glass

Having uncontrolled tonic clonic seizures during the waking hours, when there is a good chance that you will fall and injure yourself, does indeed suck.

I can tell you that life gets better when you get the seizures under control. What are you doing right now for seizure control?

[speber]

You are in a bad way, but don't dare give in to too much disdain!...you made it here somehow and there's a wealth of good info and good cheer. Got your 'virtual back' so to speak!
Myself (and countless others) have gone through 'extreme patches' and have gotten REALLY down. What I would impart to YOU is that 'this doesn't mean this is how it will always be!'...things can change.
I used to have an average of 3 full-on tongue-biting GTC seizes\day during a stint in elementary school until a new drug was tried (for example). A few times later in life I would have a stretch of these multiple seizes, but they had become nocturnal only (thank God) and only surfaced during times of severe illness.
Anyway, look around this forum...TALK to the people here (they are VERY nice and VERY helpful)...hopefully something can get you some relief!

PS. I'm personally pushing 'music\audio' as a therapy as it works for me!...but Bernard's got a very nice link to MANY OTHER alternative therapies listed in his signature as well.
Peace.

[RobinN]

Hi Randijeanw - Welcome
My heart goes out to you. My daughter is the one that has seizures and it can be really tough at times. She is 15 and the majority of them happen at school in the middle of class or out in front of the whole "world".
Just remember all of the really great people in history that have dealt with the same thing, and know that you can go on to lead a successful life. Especially from your personal knowledge of compassion. Treat yourself well, especially for holding your head up during the tough times.

[POSITIVEPERSON]

Hi Randijeanw: NIce meeting you. I am the one in my family with epilepsy. I have had szs at the pool I swim, in my apartment, on the street, in the NYC subway, and my dad and my dr always told me I had to pick myself up hold my head high and keep going.
LIfe goes on. I had a seizure in a chair and somehow knocked my front tooth out and had to get braces to save the tooth. That was this year, it was amusing getting braces at 51 yrs old.

As for the chopped up tongue you can gargel with warm water and hydrogen peroxide to help heal the tongue
Or warm water and tea tree oil

My childhood drs always expalined to me that if I had a heart condition or diabetsis instead of epilepsy than I would be taking that into consideration instead. Epilepsy was not an issue or an excuse!!!!!!!! I was to live my life to the fullest and I have tried thanks to my Dad , and Drs.

I am now off meds and I use homeopathy and the Gard diet to control my szs have any questions, feel free to pm or post on the board a question.

welcome to the board and nice meeting you
Riva

[randijeanw]

This could be so much worse. All of you... you're all amazing troopers, and I couldn't be more inspired by all of you. Having triggers that are so likely at University is pretty annoying, but I usually don't let it hold me back. This... not knowing when it is going to happen is what gets me the most. It could be so much worse... but it doesn't mean it does blow a big one. Having the support of my friends, family, and strangers on the internet helps more than anything. Thank you <3

[Bernard]

You are welcome to vent here any time.

[Birdbomb]

I could have sworn I posted on this thread last night.

Oh well, must be the damn oldtimers disease creeping up on me again, anyway....

Welcome RJ

This site has become quite amazing over the past few months. We are gathering an enormous audience of incredible people. Most have "been there done that" and are very understanding of the need to vent.

So let er rip anytime!

[brain]

((((((((( RANDI )))))))))))
But you're always welcomed to vent,
unleash and unload!

Welcome to the CWE Board!

[Yve]

Hi Randi,

There is nothing like a good vent!!! I also know how you feel.
- I've fallen and cracked my head on the edge of a metal bench, waking up with blood and urine soaked clothes with that lovely, familar confusion. The top of my head required nine stiches.
- Fallen in the shower and gave myself a black eye, chipped front tooth and fat, bloodied lips. I had to explain to people that it wasn't my boyfriend who beat me up. lol!
- Fallen at a railway station, wet myself and chewed my tongue to pieces as per usual, and woke up to find a woman spitting at me. I was pretty skinny at the time and she thought I was a junkie.

It also took me a number of years to balance my life with my epilepsy, because I didn't want to give the thing an inch or even think that it had some control. Weirdly enough, I even prefered to have the fits precipitated by my lifestyle than to give up all the things I wanted to do. I wanted to do everything and more that my friends were doing, and essentially worked, studied and partied myself into the ground. That way I was in control of my life, not the epilepsy. However, the epilepsy didn't cower down by my show of control, and I learnt to get enough sleep and to relax.

cheers,
Yvette

[speber]

WOW. What you guys have gone through. I couldn't touch them with my experiences...don't EVER wish to be able to ONE-UP you on those...I just wish you peace when you can get it.
Why I call it a great thread is that you guys harrowing tales of life with epilepsy show others like myself that IT COULD BE MUCH WORSE.
NOW THE FLIP---I mentioned before somewhere mine USED to be very bad to the tune of 3 a day sometimes in spurts but has 'mellowed out'...maybe this can help you guys with monster episodes 'hang in there' knowing that the severity and frequency sometimes decides to 'change course' or 'evolve into something more palatable?' Mine seems to mellow out due to music...others use various other methods of relaxation or redirection to get 'on a different track' with their epilepsy without even relying on the anti-epileptic drug's...there are things to try!

Good Luck eveyone

[Birdbomb]

Well, speber, you know what they say, experiance is the best teacher.

Just think, over 3,000,000 in the USA have epilepsy! So NONE of us are alone in our experiances.

[speber]

How ironic to notice how sad THAT would be? I would NEVER wish it on anyone...but I'm glad I'm not the only one!....................... ..............................


Hey, judging from our sheer numbers maybe we could SUCCEED(simple partial?) from the normal people(normal?) and create a new society all our own!!!!

No one would dare oppose us because we:

• bite our tongues and spit blood at them in battle in the glorious tradition of your more savage armies in history...(hey, it worked for them for awhile!)

• are largely a bunch of 'druggies'...it might send the wrong message to others.

• are OUT OF OUR MINDS and likely to do just about anything...they just wouldn't know how to deal!

Sorry everyone, it's lunch, my sandwich is missing...I couldn't resist a little fun!
Rock on.

[Bernard]

Sorry everyone, it's lunch, my sandwich is missing...

Sig worthy material there.

[brain]

Sorry everyone, it's lunch, my sandwich is missing...

Sig worthy material there.

I'm sorry for stealing some of
your lunch ..........
here.. you can have it back!

[speber]

Mmmmmmmmmm........tuna jelllloooooooo!

[execwife2002]

Randijeanw,
I'm sorry that you had a rotten, no good day. As a mom I truly understand your feeling lousy about having epilepsy. My son who is 19 says the same things that you've stated. He becomes very depressed, frustrated, moody...very moody and sometimes it scares me. I know he won't do anything bad, but the frustration he vents is frustrating for us (his family) as well. We want as much as he wants for his seizures to get under control. We continue to support him and look for the "right" recipe of meds that will control his seizures.Don't give up, having a forum like tis one to vent and get support really helps. In the mean time we continue to read and digest as much as we can to educate ourselves as well as him. I would like to know if there are any teen forums that he could join.
Marian

[Bernard]

The EFA has a forum category set aside just for teens:

http://www.epilepsyfoundation.org/ef...es.cfm?catid=5

[Yve]

Epilepsy Action Australia also has a forum for teens to chat and share their stories.

http://www.epilepsy.org.au/teens/index_teens.asp

[execwife2002]

Thanks Bernard and Yve,
I am going to share this information with my son tomorrow. He's sleeping now. He has a terrible sinus infection. He has been exhausted and has missed 2 days of school. My husband told me that our son was afraid to go to school today because he thought with the sinus infection it could bring on a seizure. My husband told him not to worry because he has no control over the seizures. Tomorrow he will go back.
Marian