Hi, new here.

[Christabelle]

Hello! I have Seizure Disorder. I had my first one when I was 28, and in the Navy. I was holding my two month old baby, and dropped him. It was awful. Subsequently there were EEG's and MRI's. They did not see anything. I continued to have "tonic clonic" type seizures about once a month, so they diagnosed me, and started medicating me with Lamictol. I keep having them, I am now up to 600 mgs a day, depression meds and klonopin. I keep hurting myself, and I have developed a phobia of being in public. I am scared of having a seizure, and drooling/bleeding/peeing and twitching around on the floor where people I don't know are watching like I am some kind o' freak show. It's only been a year, and I feel like I am loosing my mind. This is not really a "pity me" post. Trust me, I get plenty of that (ha ha). I was more just looking for more stories like me. I am always astounded at how unconcerned doctors seem. It feels like such an awful thing to have happen. How normal is it for them to take this long to get it under control? What is the likelihood that they never will? Is it odd that it manifested so late in my life? Thank you in advance for any information.

Christal

 

[Christabelle]

Oh, and I know some of you have had to deal with this your whole life... So I apologise for my whining.

 

[Kaitybugsmom]

Hi Christabelle, welcome to CWE.

You will find friends, support, opinions, advice and a wealth of information here. How scary epilepsy is, for the person who has it and the loved ones in their life.

Maybe the medication you are on is not the right medication for you. Unfortunatly one med can work wonderful for one person and not work at all for another. I always thought the mind was an amazing thing, the one thing that is amazing about epilepsy is that it seems that no two people are exactly the same in seizures and control. For example high blood pressure in me, you and almost everybody here can be treated and controlled with the same exact medication (keeping in mind that nobody is allergic to it). The same is not true for anti-epileptic medications. Sometimes its trial and error to find the right fit. There may even come a time where the med is right in controlling seizures but the side effects are not so nice. There are some great topics here on diet and other things that can and HAVE helped control seizures.

I'm sure that others will chime in with their experiences. Keep your chin up. I know somedays its easier said than done. Your answer is coming and yes I know it can seem like a long wait.

 

[LJ-Bain]

Everybody only knows what their own experience is like and can only empathize with others...
I am so sorry that you were diagnosed when you had just a two month old! How scary!
I know what it's like to be a mom with little ones and trying to handle being a mom and dealing with seizures.
Just knowing how to handle things emotionally is the toughest thing in the world.
I keep things secret from most people unless I know I will be with them for a whole day and then they will most likely witness a seizure.
I try so hard not to think about what other people think. I try to think about the people whose opinions matter...my friends, my husband, my family, my children....
Everybody else doesn't know me so I can't control what they think but I also know that whatever they think it's not personally based. They don't understand.
Mind you, I only get partial seizures. Granted I get many a day but because I don't pass out I still feel a part of my world even though I still don't have alot of control.

My seizures manifested when I was 32. My sister was 36. So no, I don't think it's strange that you were diagnosed later in life. In some ways I feel it is a blessing. I'm glad I didn't have to go through high school, or meet my husband, or find my career while dealing with epilepsy. Goodness knows alot of people do and I feel for them!
Doctors do show an astounding lack of concern in showing you or trying to get you help in just how to live your daily life.
You are stronger than you know.
I hope you have someone to talk to...you can always talk to us!

 

[Nakamova]

Hi Christabelle, welcome to CWE!

Have your docs looked into a hormonal cause for your seizures? The fluctuations in estrogen that come with pregnancy and childbirth can be a seizure trigger for folks who are vulnerable. If there is a hormonal link, then there might be other treatments (such as progesterone cream) that would be more effective than the Lamictal. I do think you should have your neurologist re-evaluate your meds -- you're on quite a cocktail AND it isn't working. There are other medications that might work better, and the antidepressants may or may not be helping.

I can understand your phobia about seizing in a public place. For me, after the first few, I stopped caring about the public aspect. Yes, it sucks to have the seizure, but I find it convenient that I'm not "there" for it. And give people credit -- there may be the "freak show" aspect for a few douchebags out here, but most people react with concern and want to help. I hope you can overcome your anxiety, and put your energies towards finding a better set of neurologists who will pay more attention. Be persistent; with epilepsy it's necessary, and worth it.

Best,
Nakamova