My doctor is Dr. Michael Williams(former Head of the Hydrocephalus Program at Hopkins). He left Hopkins for the Life Bridge Brain & Spine Institute in Baltimore, several years ago.

While I do have family in the area, I can't stand the behavior of people in the Maryland suburbs of the D.C.-Metro region.

I want to move to New Mexico.

tos8 i really feel for you. I just went through status 2 weeks ago and had to be airlifted to the hospital (UMC in Tucson) because I live an hour and a half away by car. the reason for the status was because I couldn't get my clonazepam which I take with neurontin to control my seizures. I have been told by many docs throughout my life that I was "faking" one time in HS I had a 2 hour seizure, lost ten pounds that night and they kept me in the hospital for tests for a week. Well that EEG showed nothing. I have only had one EEG that showed spikes. the last neurologists I saw was at the Mayo clinic in MN I used to live in Rochester, MN. Anyway, they did the video eeg twice when i lived thee and nothing showed so they said I don't have seizures. it was crazy. And they kept getting the stories wrong and the discharge notes were completely wrong and I complained to the nurse who said i had to take it up with the Dr. so after I got home I tried to make an appt. with that Dr. so he would change the discharge notes and he refused to see me! the resident who took the notes totally didn't listen to a thing I said and my boyfriend at the time kept telling him it was seizures that he had worked with people who have seizures before and mine were definitely seizures. One doesn't fake a seizure where there head ends up partially under the bed and they keep banging their head on the floor and the bedframe over and over. Or falling down the stairs and getting rug burns over every surface that isn't clothed etc. It just makes me so angry that these doctors make these claims just because they don't witness a seizure themselves.

i have also had a couple of good neurologists in my life. One was in Minneapolis but has since retired and one was At Yale New Haven. He was a little strange but still a good Dr.

I am also in your boat as far as my brain is considered after the status. i feel like I'm in a complete fog and my body (which hasn't seen any exercise in years because i have FMS and am now exercise intolerant) went through so much with those seizures that all I can do is rest for the most part and once in awhile get on the computer. I live alone and live in fear of having another seizure. Two nights ago i forgot to take my night meds which includes the clonazepam as well as other meds for the FMS. I didn't realize it until the next afternoon. But ever since then I have felt even worse and am afraid to go anywhere plus I don't even have the energy to bathe at this point. sigh. I never thought seizures would end up scaring me so much and rule my life. i know it's temporary but I am scared none the less.

Sara

Hi Sara,

I had status seizures yrs. ago when my Dr. put me on neurontin for head pain and seizures. I always had absence (petit mal) and complex partial seizures since I was 10 yrs. old I'm 49 now. Once the neurontin kicked in the absence status sz. started left and right and I found out that the drug co. making the drug was doing off market labeling with the drug and it was causing status sz. as well as other types of sz. for people who never had a sz. in their life. Also 72 people took their life while on this drug. NBC's DATELINE had a show about all of this and then I went on line and typed in neurontin lawsuits to find the co. was being sued for $240 million by many different people.

My advice to you is to see an Epileptologist (Dr. specializing in epilepsy) and go to an epilepsy center which are usually at University or big hospitals.The Dr. can do a WADA test on you and find out what's triggering your sz. I'm sure you know that stress and lack of sleep are the 2 main things that trigger sz. for a person as well as hormones changing each month. I just recently found out that I was cell phone sensitive which means if people around me are using cell phones it triggers sz. for me. I hate it when I go to work or go shopping and people are using cell phones left and right then my sz. start up.
Correct me if I'm wrong but you spoke about FMS is this a form of MS? If it is there's a connection between MS and epilepsy also. I have an aunt who had MS and she told me that she was told that it could lead to sz. for her.
Cut back on the caffeine, don't use nutra sweet or cell phones because all of these things can cause sz. for a person. If you haven't kept track of your sz. get a calendar and start writing down the time you have a sz. and how long your sz. last by doing this your Dr. may see a pattern in your sz. as to what time of day or what days of the month they are happening. Also take note if there's a low pressure in the weather because sometimes that will trigger sz. for a person. I wish you the best of luck and May God Bless You!


Sue

Hello, my name is Cynthia. I am hoping to meet someone in the area with hydrocephalus. I am married and have friends but can feel so alone when no one besides my doctor understands what I am going through.

If you are still in the DC area and would like a friend to share with please contact me.

Peace and well-being,
Candlelight