Fairly new to these parts!

[Saiyan MT]

Hello! I go by the name of Saiyan and I have epilepsy.

At the moment I dont know exactly what sort I have, so I've been diagnosed as just having Generalized. I was diagnosed March 25th, 2011 but had my first seizure in October of 2010, I was 21.
I used to take Lamictal but hated life so much on it that I stopped taking it and now am "unmedicated" Its working out far better for me than when I was medicated.

A little more about me, I'm in community college (almost done!) studying Sociology and have hopes of transfering to CSUSM fall of 2012. I'm an emerging belly dancer, a student of American Tribal Style belly dance and other belly dance forms for almost 3 years now. So far no seizures during the few performances I've had! (Which is great because I'm VERY sensitive to lights)

I also have lots of other interests like reading, electronica, video games and other nerdy pursuits! My dream is to be a librarian/ high school counselor.

I have seizures about every 3 days (more frequent if stress is prevailing) but have auras every day. I'm so happy that this forum exists, and its a pleasure to meet you all!

:banana:

 

[Nakamova]

Hi Saiyan, welcome to CWE!

I know how frustrating med side effects can be, but I would caution you about going untreated for too long. The more the brain seizes, the more likely it is to seize again in the future. The "neural path" gets more and more well-trodden, and the brain gets in the habit of going haywire. Have you let your neurologist know that you are going med-free? Have you discussed any other meds or treatment options?

If you don't already, I would recommend that you keep a seizure diary. It can help identify and isolate seizure triggers (like flashing lights and stress), and it can also provide a heads-up if your seizures are progressing in frequency or kind.

Anyway, I'm glad your seizures aren't preventing you from pursuing your studies and your belly-dancing!

Best,
Nakamova

 

[Endless]

Hi, Saiyan,

Welcome to the forum!

I agree with Nakamova. The longer you leave your seizures untreated, the more likely they will continue or get worse.

There are some new epilepsy drugs out there that have fewer side effects. I'm on Lamictal and doing pretty well on it. I think my mind is more intact than on the other drugs. That doesn't mean it's side effect free. I can't sleep very well and I have mood swings, but my head isn't stuffed with cotton, either.

I'd encourage you to go see your neurologist and talk things over with her. She may surprise you with a drug that works for you.

 

[survivor]

Hello there! When I was in school i used to choreograph dance numbers and dance too much, my friends were always worried that I can have seizure during the final performance.................................... but it never did! Although during the practice time i had them! I never stopped my med and when by mistake i did, i had to pay for it and I had some really draining seizures, so my request is find the suitable drug for u! Epilepsy plays gaames with us! We live in a glass bowl, just fogetting that we have some limitations..................... and one day when we really stretch out and be playful, we hit the bowl stroking it hard and then realizing that we should take some care! So do take care! Best of luck!!!

 

[ziggidypoo]

Concern Over You Non-medicated

Hi - it's been about a yr since I've been on - I welcome you though. I'm concerned about you being unmedicated. I've had seizures off/on since I was 2 yrs old (soon to be 55) and unmedicated could go 20 yrs w/o seizure - but, then each return would be worse. I am now on so much meds unreal - had complex partial yesterday. You said you have "auras" frequently - I forget. My neurologist/neurodiagnostitian said auras are actually seizures??? I guess it depends on what the aura is like. I can usually tell long enough for me to go pee and get in bed and Carey (my Love) puts on my cpap/o2 etc - and we let the seizure happen and I sleep it off. I JUST got back on here JUST read your 1st post - so you may have answered all this, but I hope you are under med care. Take care - you are cared about here!! Ziggidypoo (Gail Batton)​

 

[Saiyan MT]

Hello everyone!
Nice to meet you all ^.^

I know that not being on medication isn't exactly ideal but I just don't want to go that route right now. Maybe some day but not right now. The medications I've tried have caused me insomnia which of course triggered seizures, and the lack of sleep started to make me feel really anxious. Which also cause seizures. In fact when i was on medication I found my seizures to be even more aggressive and intense than when I was not on any sort of medication.
Also don't want to go on any medication because all of my other options interfere with another mediation that I can't go without. I've only got the option of about 2 or 3 anti convulsants that won't interfere with this other prescribed drug that I'm on and I've already tried 2/3 options. The last option I have is Kepra which my neurologist isn't too keen to prescribe me.

also, although my neurologist and i haven't come to any sort of agreement, she is beginning to suspect that the seizures are very much stress related. so naturally the ideal thing to do would be to reduce stress as much as possible. I unfortunately don't live in the most supportive environment. My father seems to think that I've "made up" my epilepsy and has eluded to me that he doesn't care to see them or be around them. I can't even bring up my epilepsy to him because it makes him so upset. He literally thinks I'm lying to get some sort of attention.

I am also the oldest in my family and my siblings are very very dependent. Although they are learning to how fend for themselves and starting to contribute more around the house, most of the house cleaning and cooking usually falls on my shoulders because my parents work full time and usually come home exhausted.

I dont have the luxury of being understood at home nor can I really relax at home. I have to leave the house most of the time If I think I'm going to have a seizure because my family can't handle it. The only support I have is my boyfriend, and most ofthe time I have seizures in his car. (We can't allow me to have a seizure at his mom's house because she isn't comfortable with it either) Oh and my dad is bi-polar too.. I literally can't sit down and relax at home because he will get very angry and put me to work.

I know this sounds very crazy but I'm really really trapped. I lost my job so any option of moving out with my bf or any roommate is out of the question. So yeah I have a far from ideal situation. I've tried everything from educating my dad and speaking with him but nothing helps. He wouldn't go to a neuro appt. with me even if I asked.

No amount of therapy can equip me with the "tools" to 100% deal with the stress at home. I do what I can and pray for a better future where I don't have to be the housekeeper/homemaker for my family. I just want to settle down with my boyfriend get a part time job, and get my Bachelor's degree in peace.

*sigh*
I'm really sorry its so long.

 

[Saiyan MT]

Also, I am very afraid of my father. He gets these tempers and they really really scare me. Which is why I have to leave the house if I feel an aura that day or if I fell like I'm going to have a seizure. Like I said before my situation is far from ideal but when I was on medication I was getting almost no sleep and zero rest.

Which doesn't exactly work out because I am pretty much expected to run the house.

 

[BigWill]

Do you have any other family that lives near by that would let you move in with them until you can get something going? I was 19 (before my epilepsy). Me and my parents werent seeing eye to eye on anything. All they ever did was bitch and complain and all I did was bitch and complain right back at them (acting young I suppose) Anyways my grandparents only lived about 25 miles away, so I called my grandma and asked if I could move in. She was more than welcome to let me stay for a while. I think I lived with them for about 6 months, got some money saved up and have been out on my own ever since.

Just a thought!

 

[Saiyan MT]

Hi BigWill!

Your story is inspiring
I have family in Los Angeles (I live in SD myself) but moving up there isn't so simple because I'm in college right now. Transfering my units is kind of tricky since I'm half way done and some of the classes I'm taking might not have a direct equivalency.

But its still something to consider. I just wish it just wasn't so stinkin' hard to find a job in California!

 

[survivor]

U are in such a trouble and ur dad has TEMPER!!!! ALAS!!!!! Really can not suggest anything for u but I know for sure that time will change, and when one day u will tell them about this all, he will definitely feel ashamed! Live! Carry on! Good future is waiting for U!