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Posted 10/4/2007 4:17 PM (GMT 0)
I started having seizures when I was 16 years old - grand mal.  I was stared on Dilantin and took it until last year when I was 39.  I was then switched to Lamictal, and my seizure have gotten more frequent.  My seizures always occur in the morning within a couple hours of waking.  I've had all the normal testing done which only showed seizure activity during hyperventilation.  I am being admitted to an Epilespy Monitoring Unit next week, which I am pretty scared of.  Does anyone know what will happen if I don't have a seizure while in the hospital?  I hate to do this and still have no answers!
Posted 10/5/2007 12:04 AM (GMT 0)

First of all, don't be afraid of the seizure monitoring unit.  Are they planning to keep you for three or four days?  I'm not sure if you are male or female, but take gowns or pj's that button up the front because after they get your head all wired, you won't be able to pull anything off over your head.  It will not be painful, just annoying.  You will not be able to take a shower while they have you wired and videoed.  I had it done last summer for four days when I was diagnosed and then went back in for one day recently.

It is really the best test you can ever have as far as epilepsy.  Most likely, if you don't have a seizure the first day or two, they may do some thing to try to bring on a seizure, such as sleep deprivation, holding back your food for a couple of hours on top of that.  Those are just a couple of things they did with me, just things to make the body very uncomfortable.  I started having the myoclonic seizures right away when they got me wired, but after a couple of days they wanted to see if they could provoke any other type of seizures while I was there.  I know it may sound a little harsh, but you want to learn all you can while you are there.  I am telling you all of this in the event they suggest any of this to you.  The night they made me stay up two hours later was, of course, the first night in a long time I had been able to go to sleep.  But, they are watching you on that monitor and they woke me up every time I dozed off.  Then I had to get up two hours earlier and wait two hours later to have breakfast.

I would advise you to take books, a DVD player and some movies and even a laptop because it does get pretty boring, but there is nothing painful about it other than what you go through at home with your seizures.  But, like I mentioned, it is the best test you will ever have as far as getting information on your seizures.

Take care!

Carla

Posted 10/5/2007 10:39 AM (GMT 0)

Hi there,

As Carla has said, there is nothing to worry about. She has given you some good advice in terms of what to wear (Something I probably would not have thought of!) and what to take. I think the most annoying thing is not being able to shower if it is a 3-4 day one as my hair gets very greasy very quickly. If you do not have a seizure, and they cannot induce one, I would say you are unlucky and they may want to repeat the test. More likely, you will have a seizure. Even if it is a small one that you are not aware of, it still gives them some information.

The other thing that struck me about your post is the use of Dilantin as an AED. When you started taking it, it was probably the drug of choice, but these days Dilantin is considered very old fashioned and is not used very often and Epilim is starting to go the same way. Lamictal and Carbamazipine are the 'cool' meds at the moment but if Dilantin works for you, there is no reason why you shouldnt have it.

Good luck and let us know how you get on! If you have any questions, please ask. If you dont know the answer, its not a stupid question.

Darren

Posted 10/5/2007 2:27 PM (GMT 0)
Carla and Darren,

Thanks for your replies.  I am a female.  They had told me I would be in the hospital for 3 to 5 days.  I go in on Monday, October 8.  I did know the thing about taking clothing that buttons up the front.  I've already bought some new books to take with me.

Dilantin worked for me pretty well.  I went for 10 years seizure free at one point.  After that, I would have about 1 or 2 a year.  I started having more when they were in the process of changing my meds from Dilantin to Lamictal, about once a month.  The reason for the change was, like you said, the fact that Dilantin is an old drug and has lots of side effects.

The reason I'm so nervous is because my seizures pretty much wipe me out for a day.  I usually fall out of the shower and bruise up whatever I land on.  Once I broke the toilet seat and got a concussion.  I now take my bath or shower in the evening which I don't like because I still feel skanky in the morning.  I can't imagine going 3 to 5 days without a bath.  Do they let you wash up at all?   I always bite either my tongue or inside of my cheeks pretty badly too.  I am REALLY nautious for about an hour after having the seizure.  I'd rather be in pain than be nautious.  I'm afraid the older I get I'm going to start breaking bones when I fall.

I usually go to bed pretty early, by 9:00.  I've been an extra tired person ever since I stared my meds as a teenager.  I wish them luck in keeping me up.  Hopefully that would be the thing to bring on a seizure because I really do hope they find something.  It would be wonderful to find out what's causing my seizures and get me on the proper medication. 

I can remember my dad having a seizure before he died.  I have a neice that has the grand mal seizures like me, and she takes Tegritol.  My son and daughter both had lesser forms of seizures as children but outgrew them.  They have both been off their meds since they were about 14 - one is now 21 and the other is 17.  There has to be something in my family genes.  I once had a doctor tell me that she thought it was fascinating that so many people in the same family had unrelated seizures.  I don't buy that for a minute.

Well, keep your fingers crossed for me, and I'll let you know how it went.

Thanks again.

Ann

Posted 10/5/2007 6:44 PM (GMT 0)

Ann,

In case you login again before going into hospital: As Darren said, the monitoring unit is nothing to be scared of. It's just dull. Make no mistake, you will be bored. On the other hand, it's a chance to read trashy books or watch rubbish TV or just do nothing at all and not feel guilty about it. Make the most of this rare opportunity. It's also the best place in the world to actually have a siezure. You'll most likely be sitting or lying down anyway so you won't injure yourself. There'll be nurses on hand to take care of you. As there's nothing to do for the rest of the day anyway, having it wiped out will only be mildly unpleasant. And there's the thought that this seizure, unlike all the others, is actually beneficial. Believe me, it is a comfort.

How often do you have seizures at the moment? If it's every other day or something, you shouldn't worry about spending your time in vain. You should also discuss with the doctor whether any condition - stress, sleep deprivation or whatever - brings them on and try to reproduce it. I personally just had to be deprived my pills for a while to bring on what I affectionately remember as Super Seizure Wednesday. Which wasn't much fun at the time, but let them finish the test and release me a day early. Re. washing: you're given a basin and that's it. But they don't tape you in the bathroom so you can go mad with it.

It does sound like you should be moving off Lamictal. I found it to be nothing better than a sugar pill. Not sure what your neice thinks of Tegretol. Some hold it to be the work of the Devil; I praise it for turning my grand mals into milder, more manageable types of seizures. But this is a conversation you need to have with your consultant when the results from your test come back.

Best of luck,

Andrew

Posted 10/5/2007 7:48 PM (GMT 0)
Andrew,

I've been having seizures about one a month for the past six months or so. I know that probably doesn't sound bad to someone who has them more frequently, but it's more than I've ever had before. That's why I fear the possibility of not having a seizure during my hospital stay - since I don't have them every day.

My doctor has discussed the possibility of panic attacks. It's very strange, but most of my seizures are on Monday mornings. If I have a three day weekend, then I have the seizure on Tuesday morning. They are always in the morning. It's like the thought of going back to work does it, but I don't feel like I'm freaking out about going back. The fact that they are always in the morming makes me think it's sleep related.

Thanks for the reply. It makes me feel like I'm not alone with all the replies from very nice people.

Ann
Posted 10/8/2007 3:36 AM (GMT 0)

Ann,

It's like Andrew said, you can wash up in the bathroom sink.  The problem I had at Vanderbilt University Hospital was that the sink was in the room where the monitor was, not in the bathroom.  That was real tricky.  If you run into a situation like that, just put your soap and water on your wash cloth, duck into the bathroom, wash up, step out, rinse your wash cloth and step back in the bathroom and repeat the process over and over.  Where there is a will, there is a way.

You will be in my thought and prayers,

Carla

Posted 11/24/2007 2:06 AM (GMT 0)

LJ,

Welcome to HealingWell. Members who want to be contacted have their email addresses posted.  Some people are very private and there is nothing wrong with that.  I have just noticed on several other HealingWell forums that you have posted your email address with your post.  We advise against that for safety reasons.

Carla

Posted 11/24/2007 2:17 AM (GMT 0)

Hi LJames,

I have deleted your posts on the grounds that you are not supposed to post contact information for yourself (E.g. Email address) for your own safety. There is software out there that scans forums looking for peoples email addresses which is why we encourage people to add it to their profile (Which I see you have done.) Also, we dont allow people to ask others for contact information (Such as messenger addresses). It is nice that you are looking to offer support to other people and I see that you have added contact details to your profile but please do not go around various forums asking for peoples contact details.

Regards

Darren

Post Edited By Moderator (djdaz_1985) : 11/24/2007 6:32:36 AM (GMT-7)

Posted 12/14/2007 12:23 AM (GMT 0)
Just wanted to wish you good luck and let you know that my 3 year old...very active son...had this test done.  If he can do it, anyone can!  All the best...Stacie
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