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no normal eegs,TLE , had week in EMU

Fri, 04/15/2011 - 16:40
Dull week in general, no seizures, although my veeg throughout the week was again abnormal. Took me off my meds and remembered what I used to feel like (I respond very well to meds but I guess not well enough). But no seizure. I hate the side-effects of the meds, mood, memory..etc. I do better on two (except Lyrica) but this is twice now where I get a weird reaction after several months/year of being on a second med. Somehow my body starts rejecting the med addition or too much medicine. Anyway my point in posting, the question I'd love for someone to answer is, why does a person need to have a seizure to have the surgery? My eegs show the same areas. If they need greater focus on a specific spot can't they do this with other tests or what? If they need a seizure can't they do other things to get one? Thanks if anyone can answer please.

Comments

Re: no normal eegs,TLE , had week in EMU

Submitted by tonialpha on Fri, 2011-04-15 - 21:42

Been on both sides of the picture where I wish they were not so obvious.  I was in the unit and 20 minutes later I had one.  Other times I would be there a week and nothing! 

They used different techniques.  Partial withdrawal of medication if you are changing medications.  Surgical observation.  Some Neurologist immediately withdrawal all meds the day you are in the unit.  They try different techniques.  It depends on the Medical Center or Physician.

I recently found out the cause of my seizures and I have had them for 40 yrs, via the MRI.  I have worked in the field as a Neurodiagnostic Technician.  I had no idea.

Yoga is great when meds don't work it really calms the mind.  I have had 2 surgeries and VNS.

Been on both sides of the picture where I wish they were not so obvious.  I was in the unit and 20 minutes later I had one.  Other times I would be there a week and nothing! 

They used different techniques.  Partial withdrawal of medication if you are changing medications.  Surgical observation.  Some Neurologist immediately withdrawal all meds the day you are in the unit.  They try different techniques.  It depends on the Medical Center or Physician.

I recently found out the cause of my seizures and I have had them for 40 yrs, via the MRI.  I have worked in the field as a Neurodiagnostic Technician.  I had no idea.

Yoga is great when meds don't work it really calms the mind.  I have had 2 surgeries and VNS.

Re: no normal eegs,TLE , had week in EMU

Submitted by akewbc on Sat, 2011-04-16 - 11:05

Been there done that too

For five years, I tried every anti-seizure med with no success

One of the most important things in my life is independence which means being able to drive when I want or need to. We do not have access to public transportation and like so many other folks with Epilepsy you have to be seizure-free for 6 months in order to "legally" drive.  

One year ago,  I was being prepared at the clinic to be admitted to the EMU and had a seizure which was observed and recorded in the clinic -  After it happened there I said--oh great --you've seen one so I don't have to spend time in the Unit now, right? 

Well, no that wasn't right--they went ahead and admitted me to the unit and geez- I spent a whole week there with no "action" --They did reduce the amount of anti-seizure -a little more every day-- Finally the last day of the whole week I had one and they had all the stats and seizure monitor they were waiting for to see what and where they were happening--was there more than just the one area and how large it was.  Would they be able to remove the least amount of damaged tissue with the least amount of negative results - the best result?  I believe they used every way possible to get other info about the seizures-- 

Next week I will be visiting the clinic for my one year follow-up. 

 I am always amazed to hear from folks have been given the opportunity and have chosen to go through surgery a second time.

 

 

 

Been there done that too

For five years, I tried every anti-seizure med with no success

One of the most important things in my life is independence which means being able to drive when I want or need to. We do not have access to public transportation and like so many other folks with Epilepsy you have to be seizure-free for 6 months in order to "legally" drive.  

One year ago,  I was being prepared at the clinic to be admitted to the EMU and had a seizure which was observed and recorded in the clinic -  After it happened there I said--oh great --you've seen one so I don't have to spend time in the Unit now, right? 

Well, no that wasn't right--they went ahead and admitted me to the unit and geez- I spent a whole week there with no "action" --They did reduce the amount of anti-seizure -a little more every day-- Finally the last day of the whole week I had one and they had all the stats and seizure monitor they were waiting for to see what and where they were happening--was there more than just the one area and how large it was.  Would they be able to remove the least amount of damaged tissue with the least amount of negative results - the best result?  I believe they used every way possible to get other info about the seizures-- 

Next week I will be visiting the clinic for my one year follow-up. 

 I am always amazed to hear from folks have been given the opportunity and have chosen to go through surgery a second time.

 

 

 

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