I hate epilepsy very much at the moment

[Tralee A]

Getting it off my chest folks,

I think in the last post I put in here I said that the Dr's were playing with my med's again. Well I'm to the final change in them so now I'm just on Epilem (s.p?)and Lamictil. The bit that has me so cheesed off at the moment is yesterday (which was the day i cut out the last tiny bit of Keppra out of my doses) i had a total of 5 seizures. (If anyone got in late here I have complex partial). I had one when I got up so I had breakfast and tablets and went back to bed. Woke again a few hours later and got up and did a few things then after lunch (1:40pm to be exact) I had another seizure so back to bed we go. Woke up an hour later only to have another seizure
Went up that evening to visit my pop at the nursing home and also we had dinner up there with him seeing as 1 of my cousins and his new lil boy had come down for the occasion. Mum and I walked home from there coz as loving and caring as my nan is she drives me crazy. Had 2 while walking home.

Now for today...i had one when i got up. No more so far (touchwood). just feeling very sore

[drarvindr]

Sorry for what you've had 2 go through. Hope you get better soon. prayers and {{{(((hugs)))}}}

[KellyD]

Hi Tralee A. I'm sorry to hear about your troubles. I hate epilepsy very much at the moment too. I have complex partial seizures which thankfully are under control with tegretol and i haven't had too much trouble but my 1 year old son doesn't have the same luck. Every time we think we have it under control he has another seizure. Today I was speaking with his dr about the 2 he had over the weekend and 1/2 hour later he had another one. He couldn't do it before the dr returned my call! I have been watching my poor little baby go through this for 3 months now, they have gone from several a day to 1 every 2 weeks or so. I have also watched the roller coaster of medicine, suffered through the restless nights with him every time they make a change and watched my beautiful little miracle stop breathing and turn blue and then pass out from it all. I knew nothing about epilepsy or seizures before april this year when i was diagnosed but 3 months later when my son was diagnosed I became an expert. Sorry to sound so dramatic but I'm really over dealing with all of this, the seizures and the worry and all the emotions. I'm absolutely exhausted. I know that sounds awful and uncaring but I don't mean it to be. I love my son more than anything and I just want him to be seizure free so he can be like all the other little babies his age. Anyway, just needed to get it all out, thanks for reading!

[joan]

Kelly Hugs * and good morning. I hope you feel better today. I understand the shock and the feeling of uselessness with the kids. I had a son diagnosed as a born E 3 -4 years ago and had "started" to accept it and to live with it, when my daughter was diagnosed. It hit me like a ton a bricks that after 15 years of totally healthy kids, I now had 2 Epileptic children. To be honest, I didnt handle it well at all. It was a little too much for me and I just couldnt cope. I walked around in a fog and just wasnt much good to anyone. After 2 weeks of basically lying in bed, I decided, ENOUGH.... It is what it is and it certainly could be better BUT it could also certainly be worse. From that day on, inch by inch, I started feeling better. I forced myself to eat, to get out everyday, to accept what was. The advice I can give you is.. ITS not easy. Your feelings are valid. But once accepting that? We have to move on to do what our kids need. TO move on to be thier advocates. To make the world they have to live in better for them and for others. You have found a great place for support. We all, I will guess, have good days, bad days and even better days. Be good to you. Be sure you care for yourself. I know it not easy BUT I also know it so doable. Love yourself, love your son, enjoy your time with him and the future will look brighter.

Hang in there and be well
joan*

[KellyD]

Thanks for the reply Joan. For the most part I do deal with it all pretty well, I know that there are far worse things we could be dealing with but every now and then it all does get the better of me. I cope much better now than in the beginning, I used to fall apart after every seizure and our whole household just came to a stand still and I didn't eat or do anything that needed doing but now things still get done as they should. I guess I just thought because my epilepsy was contolled so easily that after 3 months his should definitely be controlled as well. At the moment it seems that their is no end in sight which makes it harder. I'm very grateful to have stumbled across this site because nobody I know has any clue about any of this so they can listen but they have no idea what I'm rambling about!

[Kathie]

Hi Kelly,
I can understand your pain and frustration! My son didn't start having seizures until he was 16, but he went through alot of health issues, asthma, among other things as an infant. Now he is 22 and I am not coping well either. I am going through an anger stage, why him, why us, why can't we all just be healthy and go through life like a normal famiily!!! But I do realize there are people in alot worse situations, but somehow that doesn't help me. I am so scared and wonder what will come?

I am so sorry about your beautiful little boy, it's hard enough looking after a 1 year old, without having to watch out for this kind of health issue as well.

We feel our sons issues are related in some way to allergies to food's etc. Alot of people I have read on here have spoken about food as well.

Take care of yourself and this will enable you to look after your baby.
I am trying to send you strength and good wishes! I will be thinking of you both!
Kathie

[Kathie]

TraleeA,

I am so sorry for what you are going through, it must be so scary and frustrating.
I hope you have good support there and are not alone in you struggle!

Are you going back to the neurologist.? Or does this new med just take time to work?

Best Wishes and Good Luck, with everything!
Kathie