Not having a good day...need some love :) - Epilepsy Message Board

Nella985 · 09-28-2005, 12:22 PM

So last Thursday I had a breakthrough GM seizure alone in my bed while my kids were asleep. DH came home from work and I was just coming out of it and didn't know who he was or where I was for two hours....it was scary. I HATE the feeling when everything starts to come back, you know everything but it's too slow and you struggle to remember. Well, I upped my meds to 1200 mg/d of Trileptal (up from 900 mg/d) and I am just scared that I have to change meds again. Today I can't type because my left hand is slower than my right, I keep feeling like I am fading out and i'm 2 steps behind everyone.
I know I am lucky to only have these problems and I thank god that I still have my home and my family and live far from todays major struggles but I hate feeling out of control in my own skin. Right now I am terrified to be alone with my kids and any little bit of stress makes me want to scream. I used to love my Neuro but she seems to be getting busier and busier and she isn't good about calling back with lab results ( she likes to do it personally ) and I don't like going into her lately because she harps on me about my weight and I have been having a hard time losing any while going through all of the med changes that I have done in the past year since my son was born. I HATE feeling like I can't be comfortable with her anymore because she only wants to talk about diets when I am not unhealthy and not terribly overweight. I am working toward my weight loss goals but for the past 6 months of changing meds/doses nothing is working and I just want to feel comfortable with myself somehow again! Does weight have much to do with Epilepsy? I was under the impression that it didn't until now.
I had to change from Lamictal to Trileptal after 2 years because of some strange side effects. What are the chances that those side effects will happen again if I have to go back to Lamictal? ( hair loss, swollen glands, extreme fatigue )

So thanks for having my pity party with me and if you have any suggestions to bring me back to sanity I appreciate it. Sometimes it just helps to talk to someone who understands and you guys are great

kayakmom · 09-28-2005, 12:37 PM

Hey, everyone needs a place to vent! I am so sorry you had a breakthrough like htat.I have seen my son go through them and can see through him that it is not a good feeling to feel so out of control. I know how out of it he is and can only imagine what it is like as a parent. Hang in there!

Weight does NOT have that much to do with uncontrolled seizures from what I have read. Yes, there are other health issues with being a bit overweight but so many seizure meds can cause the issues. I am sorry your neuro is harping on that. Is there a way you can write this out in a letter (have someone else proof read before sending.......) and let her know. YOu are working on it, but feel like you are not being heard on the seizure issues when she just talks about weight? Worth a try.

(((hugs))) I am so sorry your week has been rough. Hoping that you can find relief in both areas. Your kids are lucky to have a caring mom. I do not have epilepsy but I have had chronic health issues most of my kid's lives. It is so hard and I also feel so discouraged at times.

I have a friend on lamictal who has done really well until she got up to 600 mg then the insomnia kicked in. At that point she was seizing from lack of sleep and SO miserable not sleeping welll. She added topamax and lowered lamictal and is back doing better now. It is so frustrating to go through meds trying to find hte right chemistry, but that is what it takes.

Best wishes! Hang in there!
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