ADVERTISEMENT
ADVERTISEMENT
Fam

16 years old and all of them with seizures.

Allright, so, I don't really know how this works since I just made this account like ten minutes ago and I am really just going to go with this.

I've had what my many doctors like to call "incontinence" seizures ever since I can remember, although my mom used to think I was just too lazy to go to the bathroom.  Sometimes my doctors would give me a medication that would work for awhile,  then half a year later go back to giving me seizures.

I've had about six different doctors try to "diagnose" me in my lifetime. All they can come up with is that i am simply epileptic.

I have only ever had Tonic seizures in which I can remember everything that happened during them. The only symptoms I can ever recall having are twitching on my face, urinary incontinence, and staring. They have always occured at night, as well, but they never woke me up -- recently my daytime seizures stopped.

I've had what seems like thousands of EEGs and other tests to assure my mother that I am indeed epileptic, not that I just have a bladder problem.

So, what's wrong with me?
I know it's not as extreme of a problem as the Grand Mal seizures but I still can't take driver's ed until I'm clean for six month but I have a wet bed every single night. Not only that who wants to marry someone who cant hold their bladder in?

Ugh. Sorry. I guess this is more of a vent than anything else, but I really hope someone on here will at least sort of understand what I'm going through. @___@ I've never really told anyone besides my family about this before.

If you actually read this, I appreciate it. I probably sound like a whiney brat. >__>;

Comments

Re: 16 years old and all of them with seizures.

No way, you are not a whiny brat, you are a person dealing with something that is beyond your control. Your seizures might be "intractable" which is something I'm dealing with. That means they are either stubborn to treat, or untreatable.

I'm not allowed to drive either, and just because you are not having tonic clonics (grand mals) does not mean that what you are experiencing is not bothering you and disrupting your life.

You may just be an epileptic. If all your EEGs are showing epileptic seizures, and your MRI shows no problem, then you will just have to keep trying with the meds until something works. Stress it to your neurologist that you want to know what's going on and why the meds are not working. Demand answers, he/she can give them to you. And he/she is the ONLY person that can give them to you unless you go to a different neurologist. I suggest going to the neuro you have been dealing with all this time.

To answer your question about love and marriage, find someone that "gets you" and I don't mean someone who--for example--knows all your favorite things. I mean someone who...gets..it. My husband, the guy I started dating when I was sixteen, did not give a crap about my "anger problems" which are now related to my epilepsy, he just learned to deal with it and loved me regardless and loved all parts of me, and that included my flaws. Now, after being diagnosed with epilepsy, he is still just as supportive. If I woke up one night after wetting the bed (which has never happened but even so) he would feel more sorry for me than the bed. Find a person that will go through it all because you are worth it and because they love you. If they can't get it, they aren't it. Don't worry, there is someone out there for you that will get you and love you no matter what, and will, yes, change the sheets for you as well.

I am truly sorry about all of the issues you've been dealing with and all of the doctors, testing, etc, it is very frustrating and hard to cope with. I started having seizures when I was fifteen (that's as far back as I can pinpoint it) and I only just now got diagnosed, 9-10 years later. Doctors were always so much eager to push me out the door because what I was experiencing did not seem serious enough to them.

I have complex partial seizures, and sometimes simple partial seizures that lead up to my complex partials. I have also been told by EEG techs that some of my seizures sound Tonic and Myoclonic. Mine look like I'm zoning out, but on the inside I'm struggling not to pass out. Other times I do random, stupid things that make me incredibly embarrassed (like pacing around and picking up things, putting them down, and muttering to myself....ugh..). And even though I've never had a tonic-clonic, they still affect me every day and I still feel like they control me sometimes.

But you are doing the right thing in trying to find support. This is a great site for that. I've gotten lots of support and advice from individuals that understand what we all go through, from absence to tonic-clonic, we all feel like we belong here.

Hope I helped :) Hang in there, it's tough, but you are stronger than the disorder!

AJ

Re: 16 years old and all of them with seizures.

You do not sound whiney at all but rather just a frustrated teen.  I have a preteen who wet till age 11 and she still has occasional problems but that is when I know something is still not quite right and the doctor really works with us as he knows that is a very upsetting part of it.  She is a lot more controlled now than before but I will tell you that she takes .25 of Klonopin at night and the two times we've tried to stop that,she wets again.  I never knew her wetting the bed was epilepsy related and I'm so thankful I always treated it like it wasnt her fault because who would do that on purpose or because they are "lazy".  Hang in there

Re: 16 years old and all of them with seizures.

No, you're not a whiney teen, I had the same problem when I was younger up until I was about 12 years old. I would not drink anything and go to the bathroom before I went to bed at night and still had the same problem. I'm 43 years old now and have full-blown Gran Mal seizures, am on disability, can't work, and am having Temporal Lobe surgery here in the near future. It sounds like what you could be having are Nocturnal seizures which is probably what I was having and was never diagnosed. I think you should see a Neurologist about it and get diagnosed as soon as possible and maybe even have a sleep diagnosis done to see if they can figure out if it's something you do or something that happens at night.

Re: 16 years old and all of them with seizures.

You guys are all amazing. Everything you've said makes me feel so much better and I appreciate it immensely.

 My mom is going to call my neurologist and get me an appointment soon so lets hope we can figure something out. *crosses fingers*