New to epilepsy and the forum

[Sheripark]

Hello All!

My name is Sheri. I was recently diagnosed with epilepsy just 2 weeks ago. I am stressed and overwhelmed. I have an amazing position in the air force for the last 16 years which is surely coming to an end.

I have been sick for a year and was originally diagnosed with Menieres disease. Mistake! On the 21st of December I got this horrible vapor sensation all over my body and extremely dizzy. This is the 2nd time in a year this has happened. I was put on a tapering dose of steroids just like I was a year ago but this time I did not respond. My meniers doctor told me to see a neurologist since she could not get my constant dizziness and vertigo under control for a year. Beginning of January I went to the neurologist still crawling out of my skin with this vapor sensation and dizziness. He did the EEG and turned out I had over 200 pedimal seizures in 20 min. I freaked out. Seizures!!! This is how I have been feeling consistently almost 20 hours a day for a year!

I am new and ignorant to my diagnosis. I was started on lamictal and did poorly on that and now am on topamax and nortriptyline. Only day 5 though. No neg side effects but this extreme vapor sensation is still here. Does anyone have this? Please help me. I need some reassurance that this will go away. Imagine vicks vapor rub all over your body. It is consuming me. I just cry all day. I have 4 kids I need to stay happy around and I just want to cry all day.

I have yet to have a grand mal but do have 1000's of pedimal seizures a day. Is there anyone else out there like me?

Thanks much

Sheri

 

[Nakamova]

Hi Sheri, welcome to CWE!

Feel free to wander around the site and explore the different forums. You can search for info on a particular topic (like "tingling") using the search tab at the top. You might also search using "absence" as the keyword, as it's interchangeable with petit mal.

I don't have petit mal seizures myself, but I know others here do; I'm sure you'll hear from them soon.

Best,
Nakamova

 

[Endless]

Hi, Sheri,

First, welcome to the forum! There are lots of people in here that are in the military. Some of them have been able to stay in the service. They might be able to provide you with some advice on that.

I'm so sorry about your diagnosis of seizures. It's so hard. When I got my diagosis it really rocked my world. It's like my life changed in an instant.

You said you just want to cry all day. Topamax can cause depression, so keep an eye out for that. Topamax made me deeply depressed and I didn't realize it until my neuro caught it.

Hang in there. When your doctor gets your meds right it all gets better. It just takes a little time.

 

[Meetz1064]

Hi there,

Sheri. I'm glad that you've found your way to CWE. I'm sure that you'll find that there is plenty of information here for you to learn about E, tons of friends to make, and YES, even some members here like you. (Guaranteed.)

With some luck, your neuro's going to find you a med that can help control the seizures. You might also consider things like changing your diet, and keeping an E journal to help you find ways to identify triggers and then eliminate those triggers.

Feel free to check out all of the nooks and crannies--but don't drink my burnt coffee. Hopefully Buckeye or EpilEric will stop by with some decent coffee. I make some great tea, though.

Kick up your feet, and have fun at the dinner party....Mr B, our host, has built us an AWESOME home to hang out in. And feel free to make use of the Padded Room on those really bad days--that's what it's there for!

Take care,

Meetz
:rock:

 

[Crazy Monkey]

Hi Sheri

Welcome to CWE!!!

Like yourself I have several hundred to several thousand petit mal (absence) seizures a day. I am currently taking a high dose of Lamictal. Without Lamictal my seizures would be non-stop all day with no break in them. So I have seen a large reduction even if it is not complete control.

I have had these since I was a young kid so I have been used to these for most of my childhood and all of my adult life (I am 33 years old). They have become part of my life. I do have to think a little more before doing certain activities.

Even though they do suck, I have got them to the point of that they really only effect my life by not being able to drive.

I basically live out a normal life and have a good job, I probably push myself harder then a person who does not have seizures. The only thing for me at work is that I find them an embarrasment, but I have learnt to hide them from my work colleagues, as I don't want them to be made a big deal of. Although my colleagues do know, for the most part, they tend to ignore them and do take care of my smaller needs such as making me coffee so that I don't burn myself on hot water.

My parents and close family are not understanding towards them and do everything they shouldn't while I am having one - but thats a whole other story.

They do not affect my relationship with my partner at all, the seizures are part of who I am and they are here to stay whether I like it or not, my partner is very understanding to this fact and takes good care of me, being kind and gentle towards them.

The seizures after an extreme bout of longer absences right on top of each other (without me regaining consciousness) I am left with really bad headaches and a motion sickness feeling). Before the seizures, everything looks strange - the world loses its 3D effect and looks like a flat picture. I feel like I am watching the world from another planet (hard to explain) I have learnt to deal with this and try to push it to one side.

These seizures are more of a pest then anything, but whats life without a few challenges?

If you would like to chat more about these, please feel free to private message me.

Crazy Monkey

 

[Sheripark]

Thank you all!!

I was 16 again waiting for a response

Weird how much support you feel here although i am surrounded by a loving family. I tend to fake it a lot for my kids, I am actually miserable. @ endless I will keep an eye on the topamax. I have only been on it for six days. I tried lamictal first and got sores in my mouth!! Seriously! It also made my eyes feel like they were twirling in my head. It was awful.

Hey monkey! Appears we have some in common re our E. I will private message you later.

Any of you ever experience the menthol vapor sensation?

Thanks Much!

Sheri

P.s I am 39, married with 4 children. I am 110lbs soaking wet. Did the topamax effect your weight?

 

[Endless]

Sores in your mouth IS serious. It's one of the early signs of SJS. Glad you got off of the stuff fast.