Eeg
 

I was just in the hospital for 5 days and in the ICU for 4 days because of status seizures, i had to be intubated and life flighted to a diffrent hospital because the one hospital couldnt meet my needs. I had a seizure at the first hospital and i was in a status seizure for 2hrs and there were the ones that had to intubate me. I got to the other hospital and i continued to have non stop seizures and finally after ALOT, and i meen ALOT of meds to get them to stop and med changes then the seizures stopped and they moved me onto the neuro floor and did a 24hr eeg, well because my 24hr eeg didnt show anything they said i was faking my seizures!!!! Even though ive had two 1hr eegs that have shown spikes. Im furios and this dr even made my normal neuro dr mad. I dont know how they could ecuse me of this! Unfortantly after so many seizures and meds, my vision is doubled and my balance is off and ive fallen sevral times, my dr said this should get better soon and i see him on monday. But has anybody ever have this problem with drs at the hospitals?

Sorry to hear about this.
 

I am glad your doctor was definitely supportive, as to your disgust over what happened.

How in the world the other doctor thought you were faking a seizure, I will never understand. A seizure for as long as you had, would almost be like someone breakdancing non-stop for the same amount of time.

I know Lcm! At the first hospital they had to intubate me because my o2 sats were dropping in the 70s, like i could totally fake that! The Dr that accused me of "faking" them hadnt even witnessed one because he didnt even go and see me and wouldnt even talk to any of the other ICU drs or nurses that had to take care of me. Thank goodness I had all the other support from the drs and nurses to care for me.

I see your from MD, so you have defently heard of Hopkins hospital, and there adult neuroligy is not good! They wouldnt even do a veeg on me until after the 4 days of my constant status sz activity!

Yes, I used to go up to Hopkins all the time. Because my neurologist was in charge of their Hydrocephalus program. When he left, I chose to leave Hopkins.

http://www.lifebridgehealth.org/Main...illiamsMD.aspx

While I presently live in Maryland, I hate it. I only moved back from Minnesota after the breakup of a four-year relationship.

I need to move out of MD for my sanity.

Yeah I dont ever want to go back to hopkins for neuroligy! Atleast not impaitent! What dr do you see now and what hospital? Last thursday when they wanted to do the veeg after i had already been crazy loaded with meds and the seizures had stopped, they wanted to keep me and i told them no and took all the leads off my head. Now he wants me to come back for a week to do another veeg and I do not feel comfortable doing it with them. Im on 3 diffrent seizure medications anyways now, so hopefully my seizures will stay under controle. Theres to many residents and attendings there and they couldnt keep anything straight and they all had to many opinions and that just doesnt work when a paitent has epilepsy.

And my family and I have often thought about moving out of MD aswell! We have thought about washington state.

Hi to8s,

I went through the same mess that you did I had status sz. and I found out it was the drug neurontin that was causing these sz. and my Epi. took me off the drug and the status sz. stopped. Also yrs. ago the neuro I had said I was faking the sz. I was having but the problem was the e.e.g. wasn't picking up the spikes in my brain because it was to deep in my brain to show.
My advice to you is to see an Epileptologist at an Epilepsy Center and I would report this Dr. you are seeing to the medical conduct board. If you are feeling dizzy and you have poor balance it sounds like your AED's are toxic you need to have a drug level blood test done immediately because this can poison a person and be very dangerous it's happened to me in the past.
I wish you the best of luck and May God Bless You!

Sue

Not the meds, they checked, it was the fact that i was having complex partials and simple partials for 3 weeks prior non stop, guess my brain just couldnt take it any more. The balance and the double vision has stopped, my neuro said it would, he said it was from all the ativan they had to keep giving me. And the complex and simples still havent stopped, they only stop for a few hours after i take my meds, its the only time i get a relief, but they are defently wearing me down again like they did for those 3 weeks.

My 1 hr eeg picked up the spikes, it was the veeg i had 2 days later that didnt because i was so loaded on ativan and who knows what else that nothing was going to pick up at that point. And yeah i defently do need to find a good epilepsy center! As for the dr that made that acusantion, i dont know who it was, because of the hospital, they have randome residents and attendings in each department, so it was just a random dr that didnt know me at all. The ICU nurse didnt even agree with me having the EEG while they were giving me all those meds because she didnt think it would pick anything up, and they didnt listen to her, but that one did.

I saw another neuro dr that I know. And he thought that maybe I was to med overloaded, so we just went down a tiny bit on my triliptle sp? because when we went down on the keppra it made things worse. He did say that having a 2hr status sz. is going to cause some brain trauma, he said there is just no way around that. so thats probley why im defently still not my normal self eather. my family and I decided that we are going to stop with all these med changes since so much has happend to my body in the last 2 weeks and just give my body a break and see if it can adjust to everything that has happend. and then after it recovers, after the holidays, im going to go for genitec testing to see if theres any answers and then I want to go off all my meds for a week and then go for the veeg for a week to get a good accurate idea of whats going on.

I honestly never thought all this would be so hard and sz. could controle so much of me and I ceraintly didnt think they would get this serous.

Hi to8s,

I'm so sorry that you have been going through a hard time with all the AED's. Years ago my neuro overloaded me with 6 different AED's all at the same time. I was taking 106 pills a week and I continued to have sz. after sz. Years later when I saw an Epileptologist I had a DNA test done and they found out I was drug resistant to all AED's except 3 vimpat, diamox, and mysoline. You should ask your Dr. to do a DNA test on you and that way they can find out what AED will work the best for you with the least side effects. I know when I was on keppra it increased my sz. like crazy and with trileptal it caused me to break out with a rash. Just remember while you're on trileptal or tegretol you can't eat grapefruit or drink grapefruit juice because the enzymes in the fruit will mess up the AED and trigger sz.
I wish you the best of luck and you might want to have your neuro admit you into the hospital while going off the AED's I had to do that twice. It's a pain in the fanny but they can watch you and see how things go for you. May God Bless You!

Sue

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

I'm in DC area, are you still here?
 

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