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Video EEG being ordered on me, EEG and MRI normal
Tue, 07/19/2005 - 09:32Hi everyone,
It's been a while since I was here, but have continued to read some of the posts out of curiousity. Back in June of 04, I started having these seizure-like episodes, but my EEG's and MRI were normal, so they said pseudoseizures. Along the way, through other testing they found that I have orthostatic problems, as well as autonomic neuropathy. But they never did diagnose what the seizure episodes were, until Feb when I sent my neurologist an article on paroxymal dyskinesias (a movement disorder--see wemove.org for more info) and he diagnosed me with them a short while later. (They are a movement disorder that does not show up on EEG's or MRI's and it creates these episodes that appear to be like seizures and there's even a discussion if they are related to epilepsy or not.) I began my treatment (Dilantin) in Feb. and have had less seizure-like episodes, but was still feeling crappy.
I sought out a movement disorder specialist who deals with the paroxysmal dyskinesias last month to question my treatment (to see if there were any other meds I can be on, if I can be genetically tested-it runs in families sometimes, etc.) and after spending 20 (rushed) minutes with me, said that she doesn't think I have these dyskinesias, that I should stop my medication in the near future and seek out an epilepsy specialist. I was upset, because for about 8 months, everyone told me these are NOT epileptic seizures. I felt like I was going backwards instead of forwards. Anyway, she wants me to have a Video EEG. What are the chances that something will show up on the VEEG and not the EEG or MRI? I also had a PET scan of the brain which showed something to do with hypometabolism in my temporal lobes, but my neurologist didn't know what to make of it.
So, I have many questions on the VEEG's...do they take you off the medication before you do it, do they try to provoke seizures, how long are you there for, anything else I should know? How many of you have had something show up on the VEEG but not the EEG or MRI? What did your doctors say?
I feel like I'm starting all over again. It's very frustrating, but I am hoping that the VEEG will show once and for all if I do or do not have epilepsy. I have the symptoms for simple partial seizures and even brought this up to my neurologist once and he said, no, you don't have epilepsy. He could have ordered this test months ago but didn't and now more than a year later, here I am, going for a VEEG! BTW, I remain conscious through my episodes, but cannot speak or open my eyes, my arms and hands jerk and twitch, my legs jerk and my back arches, and my face grimaces. I usually know the trigger for them (bright flashing lights, loud noises, menstruation, cold weather, etc.) but sometimes I don't, like last night I had one out of the blue.
Sorry for rambling on. Hope to find some answers here! ~Theresa
Comments
RE: RE: Video EEG being ordered on me, EEG and MRI normal
Submitted by theresab72 on Fri, 2005-07-22 - 09:28
Excellent news! (not that she has epilepsy, but that she under control!) Thanks for the push on getting this test done!
Theresa
Excellent news! (not that she has epilepsy, but that she under control!) Thanks for the push on getting this test done!
Theresa
RE: Video EEG being ordered on me, EEG and MRI normal
Submitted by txrhb1 on Wed, 2005-07-20 - 15:04
Hi -
I am sorry you are going through such a tough time getting a diagnosis. What a pain in the *** it is when we can't seem to get answers when we need them. I can offer some advice and information, based solely on my own experiences, and hope they help.
First, I would take the advice of the movement disorder specialist and try to find a doctor who specializes in epilepsy - an epileptologist. I transferred to one in March, and have made significant progress in my diagnosis and treatment, and at least we have a long term plan now.
Many times, epilepsy cannot be detected on a normal EEG. That does not mean you don't have epilepsy, only that the monitors could not detect it during the time you were hooked up. My normal EEG's always showed "something", but nothing that was ever explained to me. Seemed to be a reason to just throw more medicine my way.
Also, MRI's don't always detect anything. An epileptologist would probably look at former MRI's, and maybe have you do another one, as my epileptologist did. The one I had 2 years ago showed nothing (except arthritis in the neck). The one done by the epileptologist was a special "epilepsy protocol" MRI, and immediately showed mesial temporal scleroris on both the left and right side - was not detected on the type of MRI they did 2 years ago.
My video EEG showed lots of activity, even though I did not suffer from one of my episodes which I defined as a seizure. Apparently, I was having seziure activity that I did not recognize. They took me off of all my medications the day the VEEG started. The medicine you are on has to get out of your system, or at least drop to a sub-therapeutic level. If you don't have a seizure, they may do a few things to try to provoke a seizure. They may use a strobe type light, have you hyperventilate, sleep deprive you, etc. If you know of things that trigger your seizures, try to take them with you - reading too long, using a computer, listening to certain types of music (using headphones does it to me), etc. My epileptologist had them give me Benadryl a couple of times, because it lowers the seizure threshold ( I never knew that before).
Some people are in for 2 days, some for a week, and I was in for 10 days. I think it just depends on your doctor and what they are seeing. My epileptologist or her nurse came to see me twice a day. They had always read the EEG's before they came in and could give me an idea of what they were seeing. That alone was a relief to me. Both the epileptologist and the nurses said that sometimes, the VEEG does not show activity because you are not around your triggers (i.e. you may be less stressed, away from loud noises, not getting tired, etc), but hang in there.
Some other suggestions:
- take comfortable clothes, that button down. You won't be able to pull clothes over your head
- take something to keep your mind busy - books, puzzles, etc
- Take snacks, etc. You know how hospital food can be!
- Make friends with the nurses - they are full of helpful information, and I had a lot of fun joking with them.
- try to go in with a positive attitude - easier said than done
- ASK QUESTIONS AND DEMAND ANSWERS!!!!!!
I wish I could offer more help, and will be praying that you find the answers that you need!
Barbie
Hi -
I am sorry you are going through such a tough time getting a diagnosis. What a pain in the *** it is when we can't seem to get answers when we need them. I can offer some advice and information, based solely on my own experiences, and hope they help.
First, I would take the advice of the movement disorder specialist and try to find a doctor who specializes in epilepsy - an epileptologist. I transferred to one in March, and have made significant progress in my diagnosis and treatment, and at least we have a long term plan now.
Many times, epilepsy cannot be detected on a normal EEG. That does not mean you don't have epilepsy, only that the monitors could not detect it during the time you were hooked up. My normal EEG's always showed "something", but nothing that was ever explained to me. Seemed to be a reason to just throw more medicine my way.
Also, MRI's don't always detect anything. An epileptologist would probably look at former MRI's, and maybe have you do another one, as my epileptologist did. The one I had 2 years ago showed nothing (except arthritis in the neck). The one done by the epileptologist was a special "epilepsy protocol" MRI, and immediately showed mesial temporal scleroris on both the left and right side - was not detected on the type of MRI they did 2 years ago.
My video EEG showed lots of activity, even though I did not suffer from one of my episodes which I defined as a seizure. Apparently, I was having seziure activity that I did not recognize. They took me off of all my medications the day the VEEG started. The medicine you are on has to get out of your system, or at least drop to a sub-therapeutic level. If you don't have a seizure, they may do a few things to try to provoke a seizure. They may use a strobe type light, have you hyperventilate, sleep deprive you, etc. If you know of things that trigger your seizures, try to take them with you - reading too long, using a computer, listening to certain types of music (using headphones does it to me), etc. My epileptologist had them give me Benadryl a couple of times, because it lowers the seizure threshold ( I never knew that before).
Some people are in for 2 days, some for a week, and I was in for 10 days. I think it just depends on your doctor and what they are seeing. My epileptologist or her nurse came to see me twice a day. They had always read the EEG's before they came in and could give me an idea of what they were seeing. That alone was a relief to me. Both the epileptologist and the nurses said that sometimes, the VEEG does not show activity because you are not around your triggers (i.e. you may be less stressed, away from loud noises, not getting tired, etc), but hang in there.
Some other suggestions:
- take comfortable clothes, that button down. You won't be able to pull clothes over your head
- take something to keep your mind busy - books, puzzles, etc
- Take snacks, etc. You know how hospital food can be!
- Make friends with the nurses - they are full of helpful information, and I had a lot of fun joking with them.
- try to go in with a positive attitude - easier said than done
- ASK QUESTIONS AND DEMAND ANSWERS!!!!!!
I wish I could offer more help, and will be praying that you find the answers that you need!
Barbie
RE: Video EEG being ordered on me, EEG and MRI normal
Submitted by roxeeco on Wed, 2005-07-20 - 09:44
My 8 year old daughter was having the same problem. She was having these episodes but her EEG's and MRI were normal. She had about 5 EEG's and one MRI. I sought a second opinion and my daughter was sent for an VEEG. She was in the hospital for about 2 days. About two weeks later the results were in. The Dr. diagnosed her with having partial complex seizures. She is currently taking two doses of Trileptal a day. She has been seizure free since she started the medication.