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Epilepsy Monitoring Clinic

Tue, 06/09/2009 - 22:53

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

Submitted by xaviersjourney on Thu, 2009-06-11 - 07:05

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!

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

Submitted by rachgamboa on Fri, 2009-06-12 - 08:51

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~

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

Submitted by Bri_Christine on Thu, 2009-06-11 - 09:26
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.

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