Tourettes and Epilepsy. So tired of it all!

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Julie30

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Hey. I'm new here. My name is Julie and I not only have Epilepsy but I also suffer from Tourette's Syndrome. I know, lucky me.

I've had Tourettes for since I was 8 years old. Well, when I was 23 I was twitching so hard while driving and I ended up in a car accident which ultimately resulted in my Epilepsy.

Now my Tourette's isn't so bad as I only really tic in the morning when I wake up , but my Epilepsy is the big problem. I have about 2-4 tonic clonic seizures a day, 10-20 complex partial seizures a day and a couple atonic seizures a week. My doctors are constantly working to find a medication combination that will help, but so far nothing has really helped. And with all the medication I've been on, I've had awful side effects. The worst one and most embarrassing is constant drooling. And with all he seizures I've had through the years I've suffered some brain damage and am now having a harder and harder time controlling my bladder.

God I am just so freaking tired of all of this. I don't know. I joined this site to hear from other people who might be in the same situation as me. I doubt there is someone out there who has Tourettes AND Epilepsy, but in terms of all m seizures and everything, there might be. I don't know. But I really hope this site can at least make me feel a little better.
 
hi julie, my name is olivia, im 16 and i was recently diagnosed with epilepsy. i have tonic clonics, absences, myocloncs, and clonic seizures. im working on controlling them and it is hard. i dont really understand exactly what your going through because you have a lot more seizures then i do and you have tried a lot more medications but i get the side effects and they suck. we all know what it is like to want everything to be word for word here. i wrote to someone just the other day that i wished epilepsy was more like asthma where the symptoms were just the same, or a c-sharp was a c-sharp and yellow is yellow and thats that. i may not kow exactly how you feel but we are all here for you. just remember, try not to be too embarrassed, which is kind of hipocritical of me to say, but try because you really cant control it. we all have your back. good luck :)
 
Hi Julie
I sure hope this site can make you feel better too.
Sometimes just going and reading a few of the jokes, puts a smile on my face.

There is some interesting new research on tourettes. Both being neurological disorders, I can assume there are often mixtures of them, as is with autism, and ADHD.

Enjoy your stay.
 
Hi Julie, welcome. My husb. hired a teenager once who had tourettes. He'd be up on a ladder making little yipping / barking sounds like a dog and DH thought he was just fooling around and didn't say anything, cause this boy was kinda nutty anyway. I knew this boy had tourettes and explained it to him. I'm sorry you have so much to deal with and I wish you luck trying to find something that will work to stop all this.
 
Hi Julie, a big welcome and hug to you. You've got a lot to handle; I'm sorry the epilepsy has proven so frustrating. Is there a possibility that you could try neurofeedback to see if it would help a little with the epilepsy?

Best,
Nakamova
 
Hi, Julie,

Welcome to the forum. I'm hoping you can get some comfort from this place, too. You've gone through so much, I can't even imagine what it is like for you. <<<<<big hugs>>>>>

I googled tourettes and epilepsy so I could try to understand what you are going through, and what I found says they aren't related at all and usually don't happen together. So you really got an unfortunate draw of the cards. Kind of odds-beating.
Medhelp/Epilepsy/Tourettes

The meds do some pretty awful stuff to us. I'm finding, though, it brings out amazing kindess in some people - kindness that either I didn't receive in the past, or didn't notice. I'm wishing for you that those are the kind of people who surround you.

I am so glad you are here, and that you have found us. We are all here for you.
 
Hi Julie and welcome,

You do have a very full plate. Sorry you have to deal with it all, the seizures do get old and tiresome. I hope you have someone with you to help 24/7.

I'm not in the same situation as you, but my seizures started when I was 22 and I suffered burns from the 1st TC seizure. I've tried many meds, had brain surgery, the VNS and still have seizures on occasion and have Diabetes now. I'm tired of it all, too, so keep coming back and we will listen.

Lots of {{HUGS}} to you!!
 
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