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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 tonialpha on Thu, 2009-06-11 - 12:55

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.

 

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

Submitted by 2XMommy on Thu, 2009-06-11 - 22:36

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!! 

 

 

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!! 

 

 

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