[tos8]

So im in the proccess of getting a new dr, I will have an appt in a couple of months, just transitioning from peds to adult (the bigger hospitals keep there long term ped paitents up to the age 23). So most of my drs are now being switched over. Ive been having complex partials and simple partials ALOT the past 2 months. No I havent gone an gotten my blood work done to check my levels yet, I know I need to go get it done so we can see what my levels are. But im still on the trileptle and depakote and I want off the trileptle and want to try a diffrent AED thats NOT in the tegretol family! The whole family makes me nausios alot. What are other meds for complex partials that arent in the tegretol,trileptle family? Ive just been taking my 1 emegerncy med about every 2 weeks to slow the szs down. I had a long complex partial last week, and I only know because I was watching my tv show on the internet and I dont remember the last 20min. And one of my little siblings nurse was working that night and she has never seen these kind of szs. befor and she said that I was not myself, she said I looked at her oddly and she asked if I was ok, but I didnt respond. And then I even got up and went to bed shortly after and again did not say anything to her or anybody else, she said I was silent, but she had no idea that, that was a sz. until I told her that can be one of mine and to next time get somebody so they can get my emerg. meds. to stop it. But thats just typically how my complex partials are, im eather silent and show odd behavior or ill yell at the person that talks to me and still show odd behavior. Its a whole personality shift of my real personality. Those kind I dont remember at all. I only feel the after affects from the sz. And unfortantly when people think you have to drop to the ground and start shaking to be having a sz. then well like that night last week, then that NURSE just thought that I was a weird mood.


The other issue though ive been having, and as we all know heart issues can cause an increase in szs. But because of my RSD/CRPS its causing my to get tacycardic and it happens quickly and because of that it then changes my body temp rapidly and I will be pouring off sweat and terribly hot. So im sure thats not helping with the increase in szs. and possibly thats whats causing the increase. But there is nothing I can do about that. And im not going to keep upping my meds, which is partly why I havent gone to get my levels checked. I HATE AEDs, and im already on decent doses of both my meds and I dont want to be upped anymore. I just dont know what else to do.


And again, when I see my new adult nuero, Is there anything more I should have her do since she will probley be a better help then my old ped dr. Since I am an adult. I have had 2 cts and 1 MRI done 4yrs ago now, which was clear. And ive had 4 EEGs, 1 defently came up with spikes, alot of them, and another one showed somthing, but couldnt be conclusive because I had alot of meds shoved into me when I had that really bad sz. a couple yrs ago. Ive always hated having EEGs done because everytime they did them (3 of them) was after i had alot of medication, like boluses of keppra, propofol, and benzos and barbiturates, and there the ones that would come of negative OBVISLY! And thats whats really made me not like my drs to much is because if I have the commen sense to know that the eegs arent going to show anything after given all of these medications, then they should know that aswell! When I was in the hospital the 1 time my nurse even tried to tell the dr to hold off the 2 big keppra boluses I was about to get because she even knew my eeg wouldnt come up positive if I had them, and they wouldnt listen and so I had to get the boluses befor the eeg. And thats when I refused to have a VEEG done, because they were going to do that aswell after the initial EEG, which would have been of course after I had the boluses of meds. And they got angry that I refused to have it done. So what can I do diffrently now with this new dr, so that way we can both figure these szs out and do it properly? My 1st eeg that came up positive with showing active szs, and spikes, it was without any medication. Sorry I know this was long for everybody to read! Thanks for your help. I have yet to have any long stretch with out any type of sz in the past 4yrs. The longest ive gone is 3 months, and that was a couple of yrs ago.

[Porkette]

Hi tos8,
I'm glad you are getting a second opinion as far as any new AED I have been on vimpat for 2 yrs. now and it has greatly decreased my complex partial and absence sz. This drug is no relation to tegretol or trileptal at all.
Yes, your heart and the warmer you feel can possibly be triggering more sz. you should try cold water therapy it free all you have to do is take your temperature 3 times a day at the same time and anytime after a sz. write down the time and your temp along with the date and keep a log of this. Then if you get any warning you are going to have a sz. put a cold washcloth on your face and the back of your neck also do this 3 times a day at the same time after you have taken your temp. I was in a medical study and they found that by putting a cold washcloth on my face it reduced the sz. and each day that I had any sz. my body temp was higher even before I had the sz. over in Europe they have come out with a device that helps cool the brain and stop sz. for many people of course the U.S. is behind in this area as usual but hopefully it will be out in a couple of yrs. Another thing you can do is take vitamin B12 1000 mcg. once a day this will calm your nerves and it has worked great reducing my sz. I wish you the best of luck and May God Bless You!
Sue