It is not length of life, but depth of life

[andysgirl1978]

This is my first thread - but won't be my last! I just got the diagnosis on 11/28/07 after several months of this nightmare. I'd like to think that I am now coping better, but my husband may disagree! I'm so happy there is a place to go where everyone will understand how this feels, because as much as my family loves me, they just don't get how different my life is. Anyone else feel that way, too?

[Bernard]

Hi AG78, welcome to the forum.

Make yourself at home here. There are many here who find the connection with others sharing the same experiences to be invaluable in maintaining an even keel.

[kris1230]

Hello andysgirl1978, nice to meet you. It's a hard thing to deal with and I know how you feel. My family and friends love me as well, but don't really understand how I feel. So many things in my life have changed. I think you'll find this site really nice because people are full of advice and you can hear stories that you can relate too. Best of luck.

Krista

[RobinN]

Welcome Andysgirl - I have come to rely on this group to help keep my life in balance. I do not even come close to know how your life has changed, but I know how it has changed mine. It is my youngest child that has been having seizures and it turned both our lives upside down. She has just turned 16 and is managing ok, but we are still working on raising the seizure threshold. I hope you find some methods to use to make life more manageable.
Keep us posted.

[andysgirl1978]

I can't imagine dealing with this at 16 - your daughter is strong! My biggest complaint is never knowing when it will strike. It's like waiting all day long for something to happen and the anxiety is terrible. I was told I can no longer give my 2 year old baby girl a bath alone. My heart is broken! It seems like every day a little bit more of my independence is taken away...

[RobinN]

Yes that is what it felt like here too. So much was changing for Rebecca. She was starting HS, and had such a happy future... then BAM! It has forced her to be strong, but it has put an edge to her personality that isn't very attractive. I am hoping it is just teen "business".

I do believe anticipating it is not a positive route to take. I know that is easier for me to say. However, changing your thought pattern is part of the game. So the quicker you learn what it is that moves your brain energy in that direction you can learn to alter that pattern. I am not sure that sentence made any sense. But it is a concept that I picked up in the book: Epilepsy: a new approach.

Also for now try not to see the changes as negative. Perhaps find a positive that you and trade it with. Treat yourself occasionally for all that you can do and that you do well. Your baby girl will be better off for having a mommy that smiles instead. She is almost old enough to take a shower with you. Get some fun toys that make it a memorable time.

You can then work on ways that raises your seizure threshold, and perhaps make them a thing of the past. We must believe that to be true.

"It is difficult to say what is impossible, for the dream of yesterday
is the hope of today and the reality of tomorrow."

Robert H. Goddard

[andysgirl1978]

Your daughter is lucky to have you! Your optimism is refreshing. I am looking at all of the things I can do instead of focusing on what I can't do. That's the idea, right?
Do you know what caused your daughter's seizures?

[TeeTees]

Hi andysgirl,

Welcome aboard, and believe me - THIS site is a refreshing place to visit, as you do find people who DO understand what you're going through. I've had seizure's for 38 years, and no matter how many more times I'll have them, my Dad still asks me things like "what do you reckon brought that on then ?", and "why do you get so agitated and short-tempered afterwards ?"....lol

No matter how times you tell 'em, or try to explain it to 'em, it's just one off those things in life you have 'experience' to REALLY understand.

I hope you find as much welcome and understanding from these guys as I have.....they're a great bunch.

Oh, one more thing - count your limbs, check your eyes, and listen with your ears. Things aren't so bad after all huh ?

[speber]

Hope you can find some good information!
People here are very nice, knowledgeable, and willing to help out!

Peace

[andysgirl1978]

I agree!
I also get very upset after a seizure - I usually start to panic, and cry because I'm not sure what happened or why. I remember when I first went on meds, it would prevent the big seizure but I still got the warning and I almost thought that was worse. it felt like my heart skipped a beat, and then all the blood rushed from my head to my feet and i was almost paralyzed with fear. Has this happened to anyone else?

[TeeTees]

I agree!
I also get very upset after a seizure - I usually start to panic, and cry because I'm not sure what happened or why. I remember when I first went on meds, it would prevent the big seizure but I still got the warning and I almost thought that was worse. it felt like my heart skipped a beat, and then all the blood rushed from my head to my feet and i was almost paralyzed with fear. Has this happened to anyone else?

After a seizure I generally feel 'fed up' (to put it polite)....then the usual questions such as 'why did that just happen ?' start to enter my mind, with the finishing sympathy question 'why me ?'

When I get the aura, I too get a feeling off a blood rush, with the skipped heartbeat, and sometimes a deep inwards breath (as if it's my last before taking a dive). I wouldn't go so far as to say about feeling paralyzed, but more tense would be a better word for me.....kinda like jumping into a bucket of cold water in the winter-time.

[andysgirl1978]

YEP-thats what it feels like. I can't tell you how relieved I am to know that someone else knows exactly how this feels!

[Shutterbabe]

I would like to say "welcome" and that I understand
the depth of your emotions. I had so many similiar feelings when I began to seize 4 years ago.

I was alone when I seized, alone in my despair and completely uneducated about what was happening to me. I did not want to "bother" my friends or appear weak. I mimimalized everything although I was terrified and aching for someone to reach out and offer me solace.

I wish I had known that a community like this one existed. Until a few weeks ago I never communicated with another epileptic or shared mutual experiences. I am so grateful to have this site in my life. I know you will find great comfort and knowledge here.

[Nancy]

Hi andysgirl ~ Welcome aboard

[Nancy]

Oh Shutterbabe !! When I started having seizures in 1990 there was no such thing as a PC and no one even told me that adults had seizures ..... I DID NOT KNOW.
I thought I was the only adult on earth that had epilepsy. I was on a small AF base in North Dakota and didn't even know where to reach or turn .... so I didn't try.

[RobinN]

Your daughter is lucky to have you! Your optimism is refreshing. I am looking at all of the things I can do instead of focusing on what I can't do. That's the idea, right?
Do you know what caused your daughter's seizures?

I would curl up in the corner if I couldn't stay optimistic about this situation. In my opinion it is a very important idea to focus on the positives, and to give yourself a break when the going gets tough.

I think my daughters seizure threshold was lowered by her diet (gluten, casein, soy, corn, sugars, MSG products), by the inability of her body to absorb nutrients properly, constipation, lack of water, hormonal changes (possibly brought on by imbalances cause by nutrition), self imposed pressures. All compounded by meds and the medical care.

[brain]

Andysgirl

Welcome to CWE!!

[tinasmom]

Welcome Andysgirl - I have found this sight to be very refreshing and helpful. It is so wonderful to have these forums where people know what you are going through and they are also very helpful. This sight has helped me gather more information on Epilepsy and all the factors that go along with it. I lost my daughter to a seizure last year and now I am raising my granddaughter who recently was diagnosed with Epilepsy. This site gives me the strength that I need to be the best advocate possible for Nicole.

[andysgirl1978]

Wow - that took my breath away. I have always prided myself on my compassion and my ability to walk in another person's shoes, but not one who has lost a child. I can't even begin to understand that pain. My thoughts are with you and your grandaughter who is very lucky to have you. There are still so many unknowns with epilepsy, and it is so important that people are educated on this. I had 6 days of feeling better than I have in months, only to have a set back on Wednesday. I am trying to stay positive, and keeping my focus on how much harder most people have it than me.
You are an inspiration!

[speber]

You are an inspiration!