Hey Everyone

[Chris515]

My name is Chris, I'm glad to have found this forum. It's nice to have found a place where people can relate and understand my condition. I don't know anyone who has E or can relate to what I'm going through.

I've had Epilepsy my whole life, but didn't realize it until I was 12 and suffered a tonic clonic seizure. Now I mostly have simple partial seizures which sometimes lead into tonic clonics.

Now I'm 29 and still dealing with the many problems that come from having E... it's not getting any easier. If anything it is getting tougher.

Sometimes it's more frustrating than others... but now is one of the frustrating times. I'm having more partial simple seizures, mostly at work. (thankfully I haven't had a tonic clonic at work) It is hard to explain to people what I'm going through, they don't really understand at all.

Sometimes it feels like my brain is feeling wonky, like I might have a seizure but my brain hasn't decided yet. It's these times where the depression sets in... in having to feel like my day could take a turn for the worse at any given time. Overall I'm frustrated that I can't do certain things in life, that I have to think of my condition before I make almost any decisions. It just feels like it controls my life sometimes. I worry about these things too much, and the stress causes a seizure... it's hard to break that cycle. I also have minor OCD which makes it all worse.

Luckily I have a fiance who is supporting me through everything. She is wonderful and I don't know what I'd do without her.

Anyways, thanks for letting me post on here. I'm looking forward to talking more with all of you.

Chris

 

[RobinN]

Hi Chris - I am glad you joined us here at CWE
Sorry to hear that your patterns are changing.
My daughter's actually got better when she came off of meds, and became very careful with her nutritional intake.

I hope you take a look around. Maybe there is an alternative you are willing to look into that might make life a little brighter.

 

[Crazy Monkey]

Hi Chris

Welcome to CWE

We are a very friendly group, when I first joined it was nice to know that I was not alone, I also knew of no one with Epilepsy and had no one to relate too, but these guys here have become my cyber family, everybody is so supportive of each other its brilliant.

I have a lot of absences at work, it is very difficult, I try to keep them a secret, but the people that do know, have a habit of watching me which can get a bit annoying. Like you said people don't understand about epilepsy.

It sounds like your fiancee is a great help and support to you, it is nice to have someone close that understands.

Anyway nice to meet you

Take Care

The Crazy Monkey

 

[KellyD]

Hi Chris! This is definitely the place to be. I was diagnosed last year and my baby was diagnosed 3 months later and when it all got too much and I had nowhere else to turn, this is the place I came and everyone was so supportive and friendly. It made all the difference. We didn't know anyone with epilepsy until my diagnosis either and I certainly had nobody to talk to about it all, nobody that knew what I was going through anyway. I'm glad your fiance is there for you, dealing with it together will make your relationship so much stronger. I know it has with me and my husband. Take care and hope to chat soon!

 

[seizures4ever]

Hi Chris and Welcome!

I'm glad you found us. This is a very supportive, informative site.

Everyone cares about everyone. Seriously, I have never seen a site where everyone "checks up" on others the way they do here.

It's very comforting to have people that can relate to your situation. :agree:

Take care, and we look forward to getting to know you! :e:

-Julie

 

[LivingFruity]

Hi Chris :hello: Welcome to CWE! This is a great place for support, encouragement, and inspiration. Feel free to take a look around. I've learned so much in the short time that I've been here.

Like Robin said, many people find success and hope in alternative methods. We've been able to control my son's complex partials through nutrition and alternative therapies. He's completely med free. It's a blessing to be in control of the seizures. Maybe there is an alternative that would give you the confidence and hope you need.

It's great that you also have support at home. It makes traveling this road a lot easier when you have people who care about you and understand. We're really glad to have you here

 

[skillefer]

Hi Chris! Welcome to CWE. Glad to hear you have a supportive fiancee. Make yourself at home here. You know what they say, " A problem shared is a problem halved." Feel free to vent in the padded room , chime in, and ask questions. Heaven knows its frustrating when seizure patterns change. All we can do is try to take good care of ourselves..so make sure that your getting 7 hours of sleep at night, eating healthy, and dealing with any stresses you have...Oh! and don't forget to cut back or quit the caffeine.

 

[jaysmom]

hi chris

I am new here too in the last week and very happy with the supuport!
My son (13) has had seizures his whole ife as well, although not diagnosed until about 3 years ago. he usually has simple partials and they never repeat them selves...always a different one. His too seem to be getting worse as he gets older. His Tegretol keeps the little ones at bay but lately he has been having drop attacks....scary.....
I feel the frusteration, thats why I joined. You're right, there doesnt seem to be many who understand and can sympathize with you. I think that they just need to be more aware of it. You dont know if you have never been taught, right?
I am going to do something different this year and totally inform my kids school about it and see how any I can help understand and see how many I can get to wear lavender/purple on march 26th! The more that they are taught, the more they will understand and/or at least have knowledge. Knowledge is power!
Good luck with everything,
jaysmom,
Chrissy

 

[Chris515]

Thanks everyone. You've made me feel so welcome. I appreciate the support and information regarding alternative methods. I will certainly do some research here!

It's great to have a place where we can help eachother and not feel alone. I hope I will be able to help some of you as well.

The changing patterns of my seizures is concerning me. This has been the case since it all began... but the most recent change is concerning me the most. Here is a bit of background.

I had complex partials my whole childhood, but it wasn't diagnosed as I had no idea what was happening, and couldn't explain it. I had a tonic clonic at the age of 12 and would up in the hospital. The subsequent tests showed that I had damage to my temporal lobe on the right side which was attributed to birth trauma. My parents had no idea that the forceps that were used did any damage as it wasn't noticed for 12 years... Anyways the Doctors suggested that the onset of puberty triggered the tonic clonic and the post-diagnosed complex partials.

Since that day I have mostly suffered simple partials, but no complex partials. I would mostly have them during the day, and sometimes at night - which would sometimes lead to a tonic clonic. But I only ever had the tc's at night.

Recovery from a sp would take about 30 mins, and would leave me tired the rest of the day. Not too bad. This remained the case until I was 24, then it all just suddenly stopped.

Then for the next two years, during some of the most stressful times of my life, I was in complete remission. (terrible relationships, intense post-grad university, etc) Not a single moment of concern.

Then out of nowhere the sp's started again, during one of the best times of my life. I finished school, had a great job, great relationship - met the love of my life. I would have them once a week, then they stopped again for three months.

Once they started up again, things were different. Now they sometimes affect my speech afterwards, which has never happened before. Has this happened to any of you? I can understand others speech, and know what I'd like to say. But certain words are just unpronounceable. For example I can't say anything that ends with 'k', or even read these same words when spelled out. It takes a few hours at least for my speech to be back to normal. The first time this happened I was scared to death, at the time I thought I wasn't going to get my speech back.

So can the after effects of simple partials change over time? Or am I having a different kind of seizure?

Thanks everyone for the help.

 

[skillefer]

Hey chris! Actually, yes to both your questions. Yes, the effects can change over time, and yes, you might be having a different kind of seizure. Think of it this way...seizure are like electrical storms in your brain. Enough storms, and there's bound to be some damage. Which might explain the slowing of the recovery, and why it's effecting the speech. Now...over time, the type of seizures you have may change, and end up becoming more generalized. To find out, you really need to go see your neuro. And, it may be that your meds need readjusting or that your meds need to be changed. don't be surprised if they do. Ok?

 

[Bernard]

Hi Chris, welcome to the forum. :hello:

Make yourself at home here.

 

[Meetz1064]

Hi Chris,

and welcome to CWE!

Skilly is right. E does morph, and change. Or, in some cases, multiply. (I added a 3d type just last week).

You DO need to get back in to see your neurologist, and talk to them.

Kindling occurs when seizures happen--or the brain LEARNS to seize. Sometimes that can be changed by adding meds, or changing your diet, sleep patterns, neurofeedback..........but do talk to your neurologist.

Take care!

Meetz
:rock: