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Had SZRE while on EEG, results normal. need advice PLEASE :(

Mon, 12/06/2004 - 18:53

Tonight I went to see another neurologist for a second opinion.  I explained the symptoms I have been having lately.  I have seen this neuro twice before, but my symptoms have gotten a little worse lately, as I have begun to have hallucinations lately.  Not hallucinations exactly, but very scary feelings that my body is morphing into a different shape-very weird and frightening.  I've also had flashing lights.  (I've been looking into Simple Partial Seizures, which to the best of my knowledge describes my symptoms to a tee)  He suggested I have an EEG right away, because he thought I might be having seizures.  (To this date I have not been diagnosed with seizures.)  I have had 2 eeg's and a 24 hr eeg that were all normal in the past, but in the past I never had a seizure while having the eeg's.

Tonight, after doing the hyperventilating part, I started to have a seizure.  I remained conscious, but could not respond (talk).  My hands were fidgety and my shoulders were jumpy.  My feet were twitchy as well as my legs.  A few times my hands smacked my knees, but it was uncontrollable.  The tech asked me if I could hear her, I shook my head yes.  She asked me if I could talk, but I couldn't.  I think it was about 3-4 minutes before it stopped.  I just felt sleepy afterwards.  She asked me if this is how it usually happened and I said yes.  We did the rest of the test and it went OK.

After the test, the neuro came back into his office and declared that the EEG was normal, that he was taking me off of the Topamax that my other neuro had put me on (for tremors and headache prevention) and that I need to see a psychiatrist because I am having emotional seizures.  "These are not physiological seizures, these are emotional seizures caused by stress", he told me. 

He pretty much refused to answer any more of my questions and told me pretty much that I need to direct any further questions to the psychiatrist he was referring me to.  I asked him if it were true that some seizures do not show up on EEG's and he said no that isn't true.  Now, I could swear that I read that on this board, in several places. 
He also told me that if you don't have a seizure while having the EEG, it will still ALWAYS show seizure activity and I KNOW that I've read on here that that isn't true.

I DON'T KNOW WHAT TO DO!!!  I AM SO UPSET AND CONFUSED AND HURT!  If there was ever a time for stress, now is it.  And guess what, I am not having a seizure.  So, shouldn't that tell him something???

Could someone PLEASE shed some light on this subject for me.  I just don't know where to turn from here.  I am seeing my old neuro on Wednesday and I don't know what to tell him.  Should I tell him what this guy said.  Do I tell him that I had the EEG and the seizure and it came out normal and that this guy thinks I need a psychiatrist?

P.S.  I am happily married with two children.  Do I have stress in my life?  Sure, just like everyone else...do I have an excess of stress in my life that would cause me to have seizures like this?  I honestly don't think so.  I've read about pseudoseizures and mostly they say people who were abused or have something in their past, I don't have anything like that.  I'm just a normal lady with two small kids that drive her up the wall every now and then just like everyone else.  I just don't get it.  Please help...Theresa

 

Comments

RE: Had SZRE while on EEG, results normal. need advice PLEASE :(

Submitted by jackieoh on Tue, 2004-11-30 - 10:20

Hi!  I am sorry to hear about your horrible experience.  My husband has epilepsy (diagnosed at 3 years old, he is now 31), up until six years ago his eeg's were always normal.  Six years ago I forced him to go to a comprehensive epilepsy center, I am not sure where you live but try to find one.  Regular neurologists always told my husband that it was what it was and that he should work at accepting it.  I feel different then his family and previous doctors and that he should try to help himself by finding a doctor that would try to help him.  My sister also has epilepsy and for years they said it was emotional but both of them had surgery and when electrodes were placed inside their brain it was found that they were having constant epileptic activity.  You have to remember the EEG in a doctor's office does not get in the brain and may not pick up on the activity.  I am sure you can find a comprehensive center somewhere in your area.

Good luck.

Jackie

Hi!  I am sorry to hear about your horrible experience.  My husband has epilepsy (diagnosed at 3 years old, he is now 31), up until six years ago his eeg's were always normal.  Six years ago I forced him to go to a comprehensive epilepsy center, I am not sure where you live but try to find one.  Regular neurologists always told my husband that it was what it was and that he should work at accepting it.  I feel different then his family and previous doctors and that he should try to help himself by finding a doctor that would try to help him.  My sister also has epilepsy and for years they said it was emotional but both of them had surgery and when electrodes were placed inside their brain it was found that they were having constant epileptic activity.  You have to remember the EEG in a doctor's office does not get in the brain and may not pick up on the activity.  I am sure you can find a comprehensive center somewhere in your area.

Good luck.

Jackie

RE: RE: Had SZRE while on EEG, results normal. need advice PLEAS

Submitted by theresab72 on Tue, 2004-11-30 - 11:39

Do you know if your husband actually had a seizure during the EEG?  I am just concerned because this is the first time I had a seizure while the EEG was on (the other times, I had no episodes or funny feelings at all).  I am still so upset about how the doctor (this was a 2nd opinion) was so hurtful and dismissive.  I have contacted an epilepsy center and have an appointment on December 20th. 

I was supposed to see my neuro tomorrow, but I am thinking about cancelling my appt.  He hasn't been able to help me or diagnose me either and I think if I tell him what happened last night, he is just going to go along with what the other neuro said and that is going to further upset me and right now I can't even go there.  So, I think I'm just going to skip ahead to the epilepsy center on the 20th and work from there.  I am also going to continue on the Topamax until then.

Thanks for writing, Jackie.  Theresa

Do you know if your husband actually had a seizure during the EEG?  I am just concerned because this is the first time I had a seizure while the EEG was on (the other times, I had no episodes or funny feelings at all).  I am still so upset about how the doctor (this was a 2nd opinion) was so hurtful and dismissive.  I have contacted an epilepsy center and have an appointment on December 20th. 

I was supposed to see my neuro tomorrow, but I am thinking about cancelling my appt.  He hasn't been able to help me or diagnose me either and I think if I tell him what happened last night, he is just going to go along with what the other neuro said and that is going to further upset me and right now I can't even go there.  So, I think I'm just going to skip ahead to the epilepsy center on the 20th and work from there.  I am also going to continue on the Topamax until then.

Thanks for writing, Jackie.  Theresa

RE: Had SZRE while on EEG, results normal. need advice PLEASE :(

Submitted by mommy2kyra on Tue, 2004-11-30 - 18:11

Hi Theresa,

 

Sorry that you had such a scary and crummy experience! I'm going to have to agree with the neurologist you spoke with though. An EEG records all electrical activity in the brain, under normal conditions (close eyes and breathe normally) as well as when under stress (hyperventilation and flashing lights). If you did have a seizure during the test, the EEG would have picked up the abnormal activity. People who have seizures CAN have normal results from an EEG, but NOT while they're having a seizure. While I'm certainly no expert, I would have to say that you experienced (and maybe have been all along) a psuedo-seizure...a psychological problem.

Keep an open mind about it. Psuedo-seizures are very convincing. I would tell your current neurologist exactly what happened (ALL of it) and ask his professional opinion. Don't fear whatever his/her answer might be, there's treatment either way. And if you have only been experiencing psuedo-seizures, be thankful that you won't be dealing with epilepsy for the rest of your life. You can work on getting the cause resolved and bye-bye seizures...sounds good to me! (((HUGS))) and good luck!

Heather :)

Hi Theresa,

 

Sorry that you had such a scary and crummy experience! I'm going to have to agree with the neurologist you spoke with though. An EEG records all electrical activity in the brain, under normal conditions (close eyes and breathe normally) as well as when under stress (hyperventilation and flashing lights). If you did have a seizure during the test, the EEG would have picked up the abnormal activity. People who have seizures CAN have normal results from an EEG, but NOT while they're having a seizure. While I'm certainly no expert, I would have to say that you experienced (and maybe have been all along) a psuedo-seizure...a psychological problem.

Keep an open mind about it. Psuedo-seizures are very convincing. I would tell your current neurologist exactly what happened (ALL of it) and ask his professional opinion. Don't fear whatever his/her answer might be, there's treatment either way. And if you have only been experiencing psuedo-seizures, be thankful that you won't be dealing with epilepsy for the rest of your life. You can work on getting the cause resolved and bye-bye seizures...sounds good to me! (((HUGS))) and good luck!

Heather :)

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