I am six months seizure free!

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Another Day
Veteran Member


Date Joined Mar 2007
Total Posts : 1055
   Posted 6/30/2009 5:36 PM (GMT -7)   
I just wanted to check back in with you guys and let you know that I am six months seizure free!!!!  It has taken me three years to get here, but I made it.
 
Is Darren still around?
 
I noticed that Randy is still around.  How are you doing?
 
I am spending most of my time trying to get my fibromyalgia under control.  Sitting at the computer is painful.  I need to get a laptop so I can come back on the site with you all.
 
Love and Hugs to all!
 
Carla

Epilepsy, asthma, fibromyalgia, GERD, depression, hypothyroidism, tinnitus


Boomer14
New Member


Date Joined Jul 2009
Total Posts : 5
   Posted 7/21/2009 6:21 PM (GMT -7)   
Hi Carla,

I just joined, and I'm interested to know the meds you're on, and what type of seizures you were having and how often? I've had seizure since I got my period, and have never been seizure free, but just started having GM 2 - 3 times a month while I'm sleeping.

I'm on 500 mg of Keppra twice a day.

Thanks, and I hope all is well!

Aurora60
Veteran Member


Date Joined Jul 2006
Total Posts : 1249
   Posted 7/21/2009 6:40 PM (GMT -7)   

Boomer, I was interested in your post.  My son has epilepsy.  He has been seizure free for almost 5 years now,prior to his seizures being so out of control.  He had his 1st seizure at age 19 was put on dilantin for 12 yrs. had a few break through seizures but then started having GM and absence seizures every day.  We got a new neurologist and he is on Keppra 2000 MG, Zonegran 650 MG and Lamictal 500 MG every day.  He had to take a 3 mos  medical leave from his job to get used to all this medication but it has stopped his seizures. The only problem is with the Keppra which causes him to be irritable and a bit hostile. But we'll settle for that over seizures any day.  Also, Keppra is generally used for partial seizures which is why he has the other meds.  All EEGs are clean. I hope this helps you.

Aurora

 


Boomer14
New Member


Date Joined Jul 2009
Total Posts : 5
   Posted 7/21/2009 7:51 PM (GMT -7)   
Aurora,
Thank you so much for the information, I see my Neurologist this week, and have lots of questions to ask, as I'm having problems getting answers. I see another neurologist in September, but I'm trying to find out as much as I can myself.
Did they know why your son started having GM and absence seizures every day?
That's my issue, when I ask why my seizures are getting worse, they answer, I don't know? It's frustrating.

Aurora60
Veteran Member


Date Joined Jul 2006
Total Posts : 1249
   Posted 7/21/2009 8:04 PM (GMT -7)   

Boomer, It's true they often don't know why the seizures get worse but with my son the dilantin was no longer an effective treatment and could no longer control his seizures.  And the 1st neurologist he had was not so thorough and the EEGS were done in the office and not the hospital. He was always having asbsence seizures but that neurologist never recognized it.  His new neurologist has his EEGs done in the hospital with awake and asleep EEGs which means he has to have very little sleep the night before.  And he is usually watching the EEG going on so he is able to see where the seizures originate in my son's brain. It was kind of trial and error on the meds but he was successful with these 3 meds he takes.  Also, one thing that is very important is that my son's neurologist is an epilepsy specialist.  And he is with a big teaching hospital where there is a group of neurologists who discuss the cases and come up with the best method of treatment.  I hope that this gives you some ideas and questions to ask your neurologist.  I wish you the very best and please do post again how you are doing and how your appts. go for you. Take good care.

Aurora


Boomer14
New Member


Date Joined Jul 2009
Total Posts : 5
   Posted 7/22/2009 6:21 PM (GMT -7)   
Thanks again Aurora, this is very helpful. Can I ask you where your son's Epilepsy specialist is located? I'm in Toronto Ontario, and am interested if his are any where in the area?

Aurora60
Veteran Member


Date Joined Jul 2006
Total Posts : 1249
   Posted 7/23/2009 9:42 AM (GMT -7)   

Boomer, I am located in the Chicago area so I imagine it would not be reasonable to get here to see a dr.  Please check though as you are in a large city.  There may be a neurologist who knows a lot about epilepsy.  Wishing you the best and hope you get the answers you are looking for.  Take care.

Aurora

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