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Jenn&Mitch
New Member


Date Joined Jul 2005
Total Posts : 5
   Posted 7/18/2005 12:32 PM (GMT -7)   
Hello,
We, when I say we, I mean my boyfriend and I. On July 6th my boyfriend woke up for work like normal, but was not feeling well, so he called in, and went back to bed. Several hours later I found him on the floor on his back staring at the ceiling, choking, and unresponsive. I called 911, while I was talking with the dispatcher, he came out of it, pushed me out of the way, got up of the floor, and went to the bathroom. The 911 dispatcher asked if we still wanted a ambulance to come out, and said no, he was fine. I told him what had happened, he said he was just asleep, and must of fallen out of bed. The dispatcher told me to watch him for a little while , and call back if anything happened. Less than two hours later, I was outside on the carport, and I heard my kids screaming, and the dogs barking...when I got back to bedroom he was in the bed having a grand mal seizure, I immediately called 911 and she talked me through his seizure, told me what to do, and what to look for. I think the seizure may of lasted only a few minutes, but it felt like forever. By the time the ambulance arrived, he had came out of it, but looked confused, and disoriented, which is expected when waking up and seeing a stranger standing over you in your own bedroom, he was able to answer their questions, but we(the emt's and I ) insisted he go to the hospital to get checked out, he got up, stumbled around and got dressed, and stumbled out to the ambulance. When we arrived at the hospital he was coherent, answered all the nurses' questions, filled out his paperwork, etc. They drew blood, and did a CT scan, while we were waiting on the results, he had a third seizure. He had asked for something to drink, and when the nurse asked what he wanted, he couldn't answer her, he answered "yes" when she asked if he could speak, and..well, he acted like he was "drunk", then closed his eyes, and laid his head back, and then the seizure began, the nurse yelled for someone to bring her ..(I cannot remember what it was called),he turned blue, which had not happened during the previous two seizures, or atleast I did not see it happen during the third one. The doctor ordered an EEG test, and after probably a half an hour of trying to hold him still, and getting the electrodes stuck to his head...he was disoriented, and agitated, but mostly just trying to get comfortable to go to sleep, they gave him a second injection. Then a different doctor came in and said that his CT scan was normal, and the EEG was normal for someone that just had a seizure, but did not indicate anything that may be causing the seizure, so they were going to admit him to the hospital atleast overnight, and possibly do a spinal tap to rule out menninigitis(they never did that test)...he was admitted to the MICU, and slept through the night, by the next morning he was awake, alert, and had a very sore tongue. He remembered very little of the day before, he said he remembered the ambulance ride to the hospital, and the CT scan, and thought he fell asleep in the ER, and then woke up the next morning in the hospital. Later that morning, he was given Dilantin, and moved from the MICU, and scheduled for an MRI, and kept overnight again, the next day he was discharged from the hospital, with no known cause for the seizures, and a prescription for dilantin,and told he could not drive for atleast six months, and an appointment for dilantin level check in one week, and a follow-up appointment in August. I have to go for now, I need to go pick him up from work...I'm sorry for going on, and on..it just feels good to be able to tell someone what happened, and know that someone else has had the same experience, and understands how scary, and confusing this can be for everyone involved.

Jenn&Mitch
New Member


Date Joined Jul 2005
Total Posts : 5
   Posted 7/18/2005 1:38 PM (GMT -7)   
TY, MandiAnn. While I was on my way to pick him up, his doctor called, and said his bloodwork came back, and his level was to low, and now wants him to take 4 pills (400MG of Phenytoin), and have his level tested again next week, which makes sense...he had a mild seizure friday night when he was asleep...and is real "twitchy" when falling asleep at night. I would of gotten to all that earlier, but had to leave. I freak out when he goes to work, because all day long, all I think is, what if he has another seizure, and no one is around....he installs floors(carpet, vinyl, etc.), and has often been left on a job by himself in the past....I don't want him to feel like an invalid, he has been having a hard time accepting what has happened, but I cannot stop worrying....I don't think I have had a good night's sleep since July 6th...and I even feel guilty about not knowing what was wrong with him when I found him in the floor that morning, and not making him go to the hospital then...we are thinking that he had 3 grand mal seizures between 11 am-4pm, which I think is pretty bad, considering he has never had any before.Hell, I wouldn't even let him take a shower by himself the first three days he was home. I not only worry about his physical health, but his mental health as well, nothing like this has ever happened...he's always thought of himself as "healthy", and he is having a hard time dealing with this diagnosis, and I wish he would talk to someone ...he talks a little bit to me, but more about how he is feeling physically, if he has a headache, or feels fatiqued, he has never talked easily about his feelings, we have been together 6 years, we have a son together, and there are still things he will not talk about, and I worry that he won't talk to me, because he feels he has put me through so much already. I am going to try to get him in here, maybe if he is able to talk with others, he will take comfort in the fact that he is not alone, we have spent several hours online visiting various websites just learning everything we can about seizures, epilepsy, the possible causes, treatments, etc...etc...

Jenn&Mitch
New Member


Date Joined Jul 2005
Total Posts : 5
   Posted 7/29/2005 4:15 PM (GMT -7)   
Ty MandiAnn. Yes, slowly. As I stated earlier his dr wanted to increase his dosage, which seems to have helped, he says he has not had any headaches, and I noticed he is less "twitchy" when falling asleep. I think we will be looking for another dr though... there is an apparent lack of communication between the doctor and his staff, and among the staff members, and us. I called to ask for the "orders" for when Mitch was to get his level checked again, and spoke with one nurse she told me to stop by and pick them up the following day, a few hours later another nurse called and asked when we were going to get his level checked again, and she would fax the orders to the lab for his Monday appointment.....when we still had not heard anything by Thursday..I called the office and was informed that the doc was out of town, and would discuss his level results with us Tuesday (August 2)...is this common? For a doctor to just leave you hanging??? or maybe it is only when you don't have insurance. sad  I will let you know what happens at the follow-up. I am still concerned about him...he just seems peed-off all the time, and his boss deciding that he "didn't need to work him" for three days this week has not helped....I don't think his boss is basing it on medical reasons, it's not uncommon for him to work only 3 of his 5 employees one week, then all 5 the next, but this is the first week he has not worked Mitch. I had been working part-time in the evenings prior to Mitch's hospitalization, but with him being my "baby-sitter", I did not feel comfortable returning to work and leaving him and the kids alone, until I was certain his seizures were under control...am I wrong for that? He called me "mother-hen" earlier this week. eyes

kayakmom
Veteran Member


Date Joined Jul 2003
Total Posts : 585
   Posted 7/29/2005 7:23 PM (GMT -7)   
I am so sorry the doctor has left him hanging like that....I hope you can get it all straightened out....

It is so hard to know what to do as far as leaving him alone with the kids. Is there a way to set up someone to check in with him and not make it too obvious? He does need to be as independent as he can be, but you also need safety for the kids.....

Hang in there with it all! Hoping you have some answers with his appointment....

DBG
Regular Member


Date Joined Sep 2004
Total Posts : 235
   Posted 7/29/2005 9:47 PM (GMT -7)   
Sorry about the recent diagnosis.  Being diagnosed with Epilepsy as an adult can be very traumatic.  I've had seizures since I was one and I feel like i'd rather have had sz's all my life than to have them come on as an adult.  Since his results seem to be inconclusive at this point your next move should be to contact his insurance and find out if he can be referred to an Epileptologist.  Seizures are their specialty and I can't imagine life now for me without mine.  I had seen General Neuros since I was young and then finally in my twenties my General Neuro referred me to one.  My seizures still aren't controlled but atleast he's always looking for new approaches to my treatment.  Hope today was a better day for you two.
Christine 

Jenn&Mitch
New Member


Date Joined Jul 2005
Total Posts : 5
   Posted 8/2/2005 12:29 PM (GMT -7)   
ty kayakmom.
He had his follow up today, and the Doc said his level is still too low....it needs to be between 10 and 20, and increased his dosage to 500 MG....and stated that using the generic (phenytoin) may be why his level stays so low, but said he understands opting for generic, but he did not think Dilantin was that much more expensive, I don't know because the day he was discharged and we went to the pharmacy across from the hospital Mitch says he thinks she said a bottle of 90 dilantin was over a $100, and a bottle of 90 pheny was $26.19...he may of misheard, can anyone give me an average price on dilantin...the doc checked on his "blackberry", and said it was only a few dollars more?!?
Ty christine....there is still no answer as to why he had the seizures, and unfortunately he does not have insurance.....his neuro is willing to let him make payments, and we also have the $8,000+ hospital bill, in addition to the ER physician, Admitting physician, and another neurologist bills, and then after next week 3 lab bills....will a Epileptologist let you make payments? His seem to be pretty much controlled with the meds, but he is still "twitchy" when falling asleep, some nights more than others....I know it's normal for almost everyone to "twitch" once or twice when first drifting off to sleep, and he swears up and down he's always been twitchy, I told him I have been sleeping in the same bed with him for almost 6 years, and he has not always been such...

Have to end for now be back soon.
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