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 here about the problems you been having. Once back when I was pregnant with our son, I had a grand mal seizure. The doctors increased my medicine. A few days later my dilantin level was sky high. We didn't know this till I was in the hospital giving birth. About 30 minutes after having my medicine I felt the same way as you did. The doctor took me off the medicine for a few days. Then I got a lower dosage and felt a lot better. So maybe you might have a blood level of one of your meds. Have them do levels when you see your doctor. My thoughts and prayers are with you.

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