I had not posted since april...things had been going well...i had managed to get my szs under control, and I knew I was having them in my sleep, and had a very good amount of time with an aura before I would have one when awake. Not perfect, but was learning about my body and adjusting. Then last Tuesday, I awoke, with a headache again in the middle of my forehead, just like i did in Nov 07 . I had to send my five year old in to wake up my teenager, Mommys gonna have a sz....i didnt think it was going to be that bad, maybe a complex partial or a gran mal, but it continued and I ended up life flighted to the university hospital. Since my move in january, this is a new facility for my treatment, and I had been trying to get in to a nuero, which still has not happened since my brain surgery in 06. Insurance issues and things of the like. I ended up in status, and spent four days completely out of it again in the hospital relearning how to do everything. I have quite a bit of memory of the first part of the szs, but at one point everything goes blank for three days.......apparently i almost died .....rather disconcerting. I had been without my sz meds for five days due to an insurance issue, and the nueros say that is what brought it all on....I dont know. It is almost six months to the day since my last status episode, this time i had at least ten sz i am told. last time it was 6-8. During november, the episode began a few days after the birth of my last son, this time no where near my period or any thing of the like. I have been having break through szs since november, but I always seem able to control them from becoming generalized or having more than one tc. It is all very frustrating, as I had found a job, and now am unemployed again, and all the steps I had made seem to be for naught.
MY questions to all are about your postictal states...

since I am recovering from status, that lasts for more than an hour, in fact this time the best guess is sz activity lasted almost two hours, is it abnormal to feel "out of it" for over a week? My memory has been affected for at least six days postictal, and im exhausted. My head has a swimming feeling, i am becoming nauseated, I have jerking sensations in my arms and trembling as if i have parkinsons, im not too sure ifthis is all postictal or if i may not be experiencing another kind of sz that is being held back for lack of a better explanation by the sz meds. I finally have another appt for a nuero in sept and have been seen by the nueros in the clinic at the university, so they are finally familar with my case.....Hopefully I will start getting some answers. Unfortunately, all they wanted to say this time was i had szs bc I was off my meds...and lecture me about that. Like i didnt know i needed them...My mother was actually on her way with them, as I had to borrow the money to get them filled bc my insurance coverage had lapsed.....a mess im telling you.

So now i am fighting back it seems...just like i had to in November. I had finally began to feel normal, and then this happens....very disappointing.

Hi Im new to the site, so I can not offer much help, I have just begun having seizures , and am just now having tests. But I wanted to say how sorry I am you have been through such a terrible ordeal. Very frightening to say the least. I hope you get some much needed answers soon. Your children sound wonderful and I am sure you are so glad they were able to help you. Good luck hope you have some good news soon. Sincerely, cz

(((mamaof6))) I've never had any status experience where I wasn't safely in the hospital and all I can offer is a prayer.

I'm so sorry this has happened to you. I hope you have all the meds you need now.

((((mamaof6)))

I'm so sorry to hear that you had another status sz. I ask myself the question if maybe you had the status because your ins. co. wouldn't give you refills on your med which I know my law is totally wrong. I had a few absence status when I was taking neurontin the drug caused me to have status sz. and I would be out of it for 40 min. to 3 hrs.
In regards to your body jerking around it could possibly be a type of motor sz. but then it could also be a complex partial sz. also. I know when I have a cp sz. I get muscle spasms around my mouth that I can't control and they last for a few seconds and stop.
I will tell you that after I had status sz. my epileptologist found more brain damage on the left side of my brain that wasn't there before. If you can try taking vitamin B12 once a day 1000 mcg. this has helped reduce my sz. greatly. I also found that after my status sz. my spelling went down hill terrible and my short term memory has gotten really bad. My prayers arew with you that all goes well and that you never have a sz. of any kind the rest of your life. May God Bless You!

Sue

Sad to hear of you having seizures after a long period of absence of them. I sure hope your insurance will straighten up and cover your medicine, because that is most likly the cause.

My thoughts and prayers are with you.

Darlene

I am new to the NTC site and scanning thru some of the letters saw yours. I understand what you've been through in status having been there more than once in the past 25 years since my problem started. The difference is that my visits to ER were during med changes-- not STOPPING because of insurance problems and financial difficulties! In my country these things don't exist as anyone with this problem is given an automatic exemption by the gov. ins program from having to pay for the meds, hence they are always available. This is one big reason I don't or won't return to the States. I could never afford the meds (they cost about 3 times as much there as the paying price here w/o gov. ins. exemption---why???) Medicareless.. at its best doesn't leave me any possibility. The SSdisability leaves one limited in finding a job--I left the country originally because ep. onset ended my career. but never mind, I find it scandalous you should have to go through what you did, risking your life for lack of adequate medical care (in this case medicines). good luck