O.k. People after everything that I have been through... surgery, VNS , every med out there, I'm still not under control. Now, I feel bad complaining because the seizure that I do have are not bad at all. Most people wouldn't even know it was happening unless you knew me well. Half the time I'm confused about if I'm having seizures or not. This is my problem... At the moment I'm only on Dilantin 300mg a day. The Dilantin takes care of the CP ( the ones that I " check out " for a minute ) it doesn't control the SP. The SP are happening a few times a day now. The make it so that I can't think straight and it is very hard to carry on a conversation. Sometimes afterwards I get goose bumps and my whole body shakes ( like I have the chills or when you have a high temp)
The Dilantin make is so hard for me to talk, I will be in mid sentence and then I will lose what I want to be saying or what something is called.
I'm a grown women and half the time I'm pointing at things and saying " you know that thing over there"
Now, Felbatol control all of this stuff and I have always considered it to be my miralce drug. The only problem being since the VNS I can't take it anymore, it causes me to have GREAT pain in the back of my neck and my shoulder blade. Not to mention the headaches that not only sit in my temple but run down the left side of my face.
The other drugs that work for me are Zonegran and Lamictal, but they both cause this pain that I talk about.
Trilepal and Neurontin work well, but both made my hair fall out and I gained 40 +pounds ( I'm not willing to be fat to get rid of my seizures, I'm a very vain women!)
Keppra worked GREAT, but I got one infection after another on it,( UTIs and yeast infections) and messed up my hormones big time.
Most of the rest of them, made me have more seizures. ( Topamax, Zortin, Diamox and there are more)
Sorry this is so long, I guess my question for some of you is this. Do you think that there is something that I could take for this nerve pain, or that there is some way to fix this pain, so that I could take one of these meds that work for me?
I just feel like there is no way out. I'm dambed if I do and dambed if I don't.
All I know is I quoted two wallpapering jobs yesterday and I couldn't even think straight, let along talk.
The Dilantin make is so hard for me to talk, I will be in mid sentence and then I will lose what I want to be saying or what something is called.
I'm a grown women and half the time I'm pointing at things and saying " you know that thing over there"
Now, Felbatol control all of this stuff and I have always considered it to be my miralce drug. The only problem being since the VNS I can't take it anymore, it causes me to have GREAT pain in the back of my neck and my shoulder blade. Not to mention the headaches that not only sit in my temple but run down the left side of my face.
The other drugs that work for me are Zonegran and Lamictal, but they both cause this pain that I talk about.
Trilepal and Neurontin work well, but both made my hair fall out and I gained 40 +pounds ( I'm not willing to be fat to get rid of my seizures, I'm a very vain women!)
Keppra worked GREAT, but I got one infection after another on it,( UTIs and yeast infections) and messed up my hormones big time.
Most of the rest of them, made me have more seizures. ( Topamax, Zortin, Diamox and there are more)
Sorry this is so long, I guess my question for some of you is this. Do you think that there is something that I could take for this nerve pain, or that there is some way to fix this pain, so that I could take one of these meds that work for me?
I just feel like there is no way out. I'm dambed if I do and dambed if I don't.
All I know is I quoted two wallpapering jobs yesterday and I couldn't even think straight, let along talk.
