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rachgamboa

Epilepsy Monitoring Clinic

This is my first discussion--ever. So, here goes. I finally found a doctor that actually cares. It seems like it took forever--ten years to be exact. He diagnosed me with having complex partial seizures.I have been on depakote for about ten years. Then, I ended up in the hopsital for having seizures. So, we talked about taking me off that and putting me on Topamax. That literally made me sick and I was still having seizures. So, I talked to him about changing it to something with not so many side effects. I have been on Keppra for about four weeks now. I am still having seizures and I went in today and he upped my dosage. 1000mg twice a day. Plus 10mg of Lexapro once a day (Well, I have been on that since he put me on Topamax). Now, he wants to send me to an epilepsy monitoring clinic. What the heck is that? What do they do? How long does it last? He says it is to see what I do while having a seizure. I have already been through tons of EEGs and a catscan. It seems so tiring trying to figure everything out sometimes. Out of all the doctors I have had, he is the only one to switch my meds, try a catscan, and attempt an epileptic monitoring clinic. Is this a good thing? Bad thing? It really stresses me out trying to keep up with all this. Anybody have any suggestions???

Rach

Comments

Re: Epilepsy Monitoring Clinic

It can be extremely frustrating to diagnose and treat epilepsy.  The epilepsy monitoring clinic will be a great diagnostic tool that your neurologist can use to fine tune your treatment.  While in the monitoring unit, you'll be in a hospital room that is specialized so that the epilepsy team can monitor you 24 hours per day.  You'll have leads attached to your head (just like a clinic visit EEG) and then the box will tether to an EEG recorder.  You'll be monitored the entire time that you're there.  You'll also be recorded on audio and video so that the doctors can hear and see what your seizures are like.

The doctors may also titrate you off of your medication in an attempt to induce a seizure.  I've been admitted to the Epilepsy Monitoring Unit (EMU) at Wake Forest University/Baptist Hospital twice and three times at Children's Hospital at Univ. of Alabama, Birmingham and I usually stay 4-7 days, but some people only stay 2-3 days if they have seizures soon after being admitted.  Bring lots of books, video games (if you're so inclined), movies, etc as your time there can be pretty boring. You'll also have to have a family member or friend to be with you to alert the nursing staff if/when you have a seizure.

Just be warned that there is sort of a Murphy's Law to the Epilepsy Monitoring Unit!  I have 20-30 episodes per week but as soon as I get to the EMU, I stop having them...it can be very frustrating.

Check out my website; www.xaviersjourney.com, for lots of great articles and info on treatment, medicaitons, personal experience.

 I wish you good luck and I hope that your neurologist gets a lot of good data from your EMU visit!  Post back and let us know how it turns out!

Re: Epilepsy Monitoring Clinic

I did not know that I had to bring anybody with me. Thanks for letting me know. I guess it is kind of scary doing something that you have never done before. I also have so much going on. My husband is in the army and coming home from overseas soon. My sister is getting married this weekend. I go to school online. Can I bring my laptop so I can work on school? That is the only thing I can work on steadily that does not stress me out. So, movies and games are a big hit, huh? Thanks everybody for the good information. I appreciate it.

Rach~

Re: Epilepsy Monitoring Clinic

Hey,

My boyfriend has had epilepsy for 3 years now and almost three weeks ago his doctors decided to hospitalize him for a week to monitor his seizures. Basically, what they did was hooked him up to an EEG 24/7 and he had a video monitor monitoring the bed and the room, although he wasn't allowed to leave the bed or an alarm went off. And the doctors basically provoked a seizure by dropping his meds and messing with the dosages and sleep deprivations. He didn't have a single seizure there until the day he was set to leave, then he had two. It was really helpful cos they had orginally believed that he had Generalized Juvenile Myoclonic Epilepsy but from the observation they learned that the seizures were actually started on the right side of his brain so that completely changes the diagnosis apparently.

It's a really helpful thing, although it's very tiring and stressful but it could def help a lot which is good. It's also probably the safest place for you to have a seizure because you're in a bed and in an hosptial. Doesn't really get much safer.

Re: Epilepsy Monitoring Clinic

I worked on both sides of working in the EMU and being a patient.  Xavier is right.  Bring plenty of things to entertain yourself.  I brought a lot of movies that I liked enough for 5 days to keep my mind off myself.  My ipod to listen to music and 2 books to read. 

The Epileptologists noted something right away but I did not push the button was my problem.  I wanted them to get what I really have at home.  The docs and the tech. said you have them while you sleep and when you wake.  I told them but they are short.  The ones that worry me is the one I want you to note.  I found out after I had one that when I pushed the button.  Theta waves occured and then sharp and slow wave occured and then spread to one hemisphere and I could not speak.  They told me that is why they kept adding medication to my I.V..     I have had many monitorings before but this one thru me.  The MRI was my most abn too.  I have had 2 brain surgeries just to control my seizures and I have a VNS too.  I'm on Keppra  3000 mg and Zonegran  400 mg. .  Flurries - liquid Valium

I am working on eating better and exercising better.  There is a new medication coming out now which is suppose to be good to try, too.

 

Re: Epilepsy Monitoring Clinic

Hi!  I can relate to your issues with your neurologist and finding one that really cares.  I had a neurologist that never mentioned treatments other than my lamictal.  I did a lot of research on my own about a year ago and after finding an Epilepsy center at the Medical University of SC, I pursued a better answer to my seizures.  The doctor there was magnificant.  When I first met him I was pregnant so I had to wait until the baby was born before I could start the indepth testing, but in the fall, I was admitted for 24/7 video monitoring.  I was told to plan on being there for a week to 10 days because they wanted to record multiple seizures to see where they were coming from and see if there was only one foci.  I was admitted on a Monday after staying up all night like I was told to.  EEG leads were attached to my head immediately upon arriving to the hospital and then I was brought to the room with the video cameras.  I only had half of my typical dose of medicine to increase the chance that I would have a seizure while I was there.  It worked.  The first night that I was there, I had 10 seizures.  With the video and the EEG report, it was determined that all of the seizures were coming from the same place in my right temporal lobe.  I had many other tests, including a WADA test, and it was determined that I was a surgical candidate.  I had surgery in February and I have been seizure free since!  I am still on my meds and I am fine with staying on them forever if I can be sure to be seizure free for the rest of my life.  Hopefully I have been cured.  The first step to the possible cure was the video monitoring. 

There is no doubt that I would suggest you going forward with the monitoring.  Seizures are so frustrating and if you can find out anything further that might help you get control over them, go for it!!

Good luck!  I hope that you get to the bottom of it!!