I saw my neuro dr today. He does not want me on a second med. He is taken me off tegretol and putting me on depikote. I told him my body has been having twitches and he is thinking its another type of seizure i must be havin. Im a bit frustrated. And again he said dont be suprised if i have a sz. during the med change, But i have them without med changes so whats it matter!!! And in a years time he wants to take me off my meds and see how i do. This is just getting irritating.

no offense or anything....I think it is time to switch to a different dr. I had to go through 3 before I found one that would take me seriously because I don't have daily grand mal's. My sz started once a week, every single one has been on a friday, why... I don 't know, and was told I will probably never know. My mother and husband are sure that I am having some other kinds of sz's and have been insisting this for years....my dr is just now starting to look into these weird episodes that I have around loud noise. Even the nuero I have now only really cares about the grand mals...but at least he will treat them.

Hi Tos8,

Many of us have the same problems. But that quoted post above hit me the most.

I allowed it to get to me so much that I became agoraphobic. I've hardly left the house for over 3 years now. Only on very specific times will I go out. And that has had flow on effects to every other area of my life.

I'm trying to get over it, but to be honest I'm not getting anywhere. I think that if I go out to the gp every few months (which petrifies me), then I should be left alone. I did manage with a huge amt of medication, move from one state to another over 2000 miles away. I don't remember much of the trip now because the only way I could travel was unconscious.

PLEASE don't et your life get like mine. I have the best carer anyone could ask for, but his life is very liited because of mine. I hate that.

This is something you don't need to start happening. Please talk to the people over at PsychCentral, they're a great bunch and very supportive. You can ask one of the pdocs for some assistance with it now, before it becomes the issue that stops your life from moving past the front deck like mine,

Good luck with it and please keep us posted ,

Rhiannon

I had been sz. free for 3 weeks! I was decreasing my tegretol to go off and went onto my depakote 1000mg a day and then this week i completly stopped the tegretol and just on depakote and tonight i had a big sz. and we think a couple small ones today because of repetitive talking, which that would obvisly be the complex partial sz. so emailed neuro tonight and going up to 1250mg of depakote and if that doesnt work then im goin back on the tegretol. I dont understand why he wont keep me on both, because for the last 3 weeks i have been on both and havent had a sz. at all. Looked into other neuro drs around here and they are even worse. So i just tryin to hold out for now.

I know its terrible! I dont go out much anyways, but i dont want to have to worry when i go out if i could have one. Church has been the biggest thing because ive had 2 there and one in my sunday school class and it scared them to death! And now when i go, you can tell they try not to look but they do. I dont like when everyone always ask me if im gonna have a sz. because may not feel the best that day or when im sitting down out to eat with my family and they always look over at me and ask of im ok. That all just really bothers
me!

I find that if my family ask if I'm ok then I am exhibiting symptoms which tell them I am not ok. So even though at times I react with exhasperation I do know that something they've seen in me is telling them I'm either having a complex partial or I'm going to have a cp or myo and very rarely a grand mal (tonic clonic). They are just concerned about you and want to make sure you are ok. We have the potential to hurt ourselves no matter what type of sz we have, so it's good to know we have angels on our shoulder so to speak...They love you, that's worth everything...

When i saw my dr a couple weeks ago i was also dignosed with myoclonic sp? Sz. along with the complex partial and if it gets to bad then it will turn into a tonic clonic, like yesterday, i guess because i had the 2 small ones that we were aware of by last night i was just pushed over the edge. I will have to start paying attention if they say somthing if my behavior is diffrent. But like tomorrow night i am supposed to go out and my family is hesitent of letting me go because there scared im going to have one while there not around and i even am worried because my friends are not going to know what they look or what to look for or even what i look like. So these type of situations i dont know how to handle and i may not just go.

Ok i had 3 seizures on thursday, 2 small complex partials and 1 big one and that took a toll on me, then friday night i had a big one when i was asleep and i woke up and i was so sick! I knew i had one because of the sympthomes that presented, i woke up so sick to my stomich and that horrible heavy feeling with my body heat pouring off of me yet i was so cold, i was in a great amount of pain and i felt so panicked because i had such a hard time calming my body down. It was terrible! I know for a fact i now need to be on 2 meds. The depakote stopped the myoclonic sz. but when he stopped my tegretol i went back to having the complex partials. These things are TERRIBLE! And i did go out last night after sleeping all day and then went to church this morning and i think i pushed my body to hard after all of this has
happend. I am sooooo tired, my body feels physically done. How do you all try to recover after your sz.?

Sleep Tos8...I sleep and sleep and rest and I try never to miss my meds.

If you're not happy with your GP ask to be sent to a physician, or a neuro. A physician has access to neuros and with one phone call can relay your symptoms and get advice on how to medicate you properly.

Make sure you are not taking any over the counter meds because they will interfere, as will antibiotics etc (feel like I've said this before but I don't remember where).

It's always harder at the beginning because you are facing an unknown enemy. Once you get into a "relationship" with your symptoms you will find that only the unusual symptoms (new ones) will throw you. Then you can come here and ask for support with that, as I did with the new cp seizures I'm having. But I'm used to them now so they only drive me nuts, they don't scare me any more.

You're not alone Tos8, take things one step at a time, and work on what you can each day. By overly stressing about it you can bring on more sz's, and that is something you just don't want or need.

Get yourself a little booklet like "living with epilepsy" carry it with you, read it get to understand it all. And educate your friends about it. You don't have to put them through a workshop, but you can say "Hey I have epilespy now and I have cp & other types of sz's". Explain each type you have so that they know what to do to help you to stay safe and ok. It's all about education, for ourselves and those around us. When people know and understand they are much less afraid of something, and can react with confidence instead of fear,

Keep us psoted on what your Dr does...you could insist on more than one med, but with some Dr's thats no use, so you may need an advocate or another Dr,

((((hugs))))
Rhiannon

Talked to my neurl today and he put me on both depakote and tegretol. He said if i still keep having them then hes gonna try me on lamictal sp?. I am still trying to figure out whats my normal and what isnt. The 2 main ones i notice are the one where i stare and im not aware of those and then the ones i can hear but cant see and hard jerking. The one where i was repetitive in saying a sentance i have never done. These things are just weird! I have had up to 4-5 sz. a week, but i have never had that many in less then 24hrs. and that took a huge toll on me. I already deal with alot of chronic pain from thoracic outlet syndrome and i guess between the both of them they just wipe me out.