ADVERTISEMENT
ADVERTISEMENT
galaxymel

Help, can I stil have seizures with normal EEG

So before I had my 72 hr EEG, my doctor said it could come back normal and I could still have complex partial seizures, so of course I was hopeful it would come back abnormal but it didnt.  I'm supposed to see Dr later this week but am worried he will change his mind about me having seizures.  Can I  still have normal eeg and have seizures?  If he changes him mind, what should I do.

Thanks

Comments

Re: Help, can I stil have seizures with normal EEG

Absolutely. I had a completely clean 24 hour EEG and proceeded to have SIX GMs over the next 2 years. Granted, I was desperately trying to get help for my son, who was later dx'ed with autism.

EEGs are NOT fool-proof, even the extended monitoring. They just give an idea of the likelihood of sz occurrence.

 

Good luck!

LIZARD :)

Re: Help, can I stil have seizures with normal EEG

 

I know of people who have had 5 EEGs, only to be finally diagnosed when they had other testing.  EEGs are not the be all and end all of testing.  And often seizure activity doesn't show up on EEGs, because it's happening too deep in your brain.   Here's a comprehensive list of other tests you might want to try...  http://my.epilepsy.com/discussion/988891 

Good luck.  You've got lots of company!     Phylis Feiner Johnson    www.epilepsytalk.com

 

Re: Help, can I stil have seizures with normal EEG

Hi Galaxymel,

I started having seizures 4 years ago 'out of the blue' right after I turned 24 (Im 27 now). From the day i was born my mother thought that i had some type of neurological problem because she said that I did this thing she called "tying up" where I would put my hands between my legs and pressmey legs together. She had all kinds of EEGs and all that on up until I got into kindergarten and nothing was found The docs. told her that I was just masterbating. It was not until August 2005 that I want into my first ever extremly violent Grand mal seizure. Immediatly, the docs. started to do several MRI's and EEG's but like you, nothing was found. In my case, I had to be put in the Epilepsy Monitoring Unit at my local hospital where they had to induct a seizure to record one while it was happening. Once they took me complelty off of my meds. I had a very small seizure where I showed no visual sighns. It was only the actual head gear that found out where my seizures were coming from, which ended up being my Left Temporal Lobe. I was then that I was considered for surgery since I was on such extremely high doses of my meds and they were not hepling out. Also, it turned out that my seizures were the hormonal type that most women have right before they have thier monthly periods due to the changes in thier female hormones. Have faith in your docs. as they try thier best to find out where,if any, your seizures are coming from. Like me, they might just have to see your brain on the computer while you are having one. I hope things work out for you and God Bless.

Re: Help, can I stil have seizures with normal EEG

Hi Galaxymel.

      You may be having seizures, even with a normal EEG. My neurologist, who is also a professor at The Baylor College of Medicine in Houston, asked me if a couple of his students could attend my visit with him last December. I agreed hoping that they would learn some information about epilepsy. One of the questions he asked me was if I had ever had a normal EEG since I started having seizures. I told them yes, but then later had  one with abnormal readings after injuring myself during a seizure. He told his students that he was  pointing out  that someone with epilepsy could have a normal EEG.

     I know it seems odd to be wishing for abnormal readings on an EEG. Having complex partials, I did, too. I felt so relieved when I did have a test come back abnormal. It helps to put an identity to what is going on and helps me feel that I am not going "crazy", but have a physical, measurable disorder. Take care.

Re: Help, can I stil have seizures with normal EEG

Hi tlh64 could you please tell me the name of the Dr that you talk about, i would like to contact him even though I am in the UK... My husband suffered a head truama at work 6 months ago and is now suffering with episodes of feeling out of it and spaced out as he puts it and also goes through bouts of uncrontorlable twitching all on his right side.. we belive this is partial seizures but the Drs here have said they belive it to be post truamtic and is all psycalogical in nature, he had an EEG last month and that came back clear even though the strobe they used triggered on of the twitching episodes.. we are so lost and feel so alone in all this and its not doing our family with our 1 year old son any good and feel we need help and advice so would love to make contact with this Dr.

Many thanks x

Re: Help, can I stil have seizures with normal EEG

My son was diagnosed with epilepsy when he was 10 and all of his EEG's from then on have come back normal he even went into the hospital for 4 days on the Long Term Montoring EEG and they completely took him off his meds and he had some of his partial seizures but again it did not turn up on the EEG but they said because the had him on video camera also they can tell by how his physical appearance was during these episodes. They told us that it could be coming from deep in thebrain that is why it is not coming up on the surface EEG's they are trying him on a different medicines and then we go from there. We have been dealing with this for 4 years now just have faith and ask questions of your doctors. It will help you to feel more confident about what is going on with you. That is what helped my son who was giving up for awhile there.

 

Re: Help, can I stil have seizures with normal EEG

I had an EEG about a year ago and still continue to have auras (maybe 2 a month)  The EEG mainly tells where the problems (which part of the brain) is with a scar, or whatever they find .  I was connected up to the EEG machine and stayed for 7 days, only had light auras.  Hope this will be of help.

Re: Help, can I stil have seizures with normal EEG

Ok I'm officially ticked off & want to through my laptop against the wall!  I was almost done emailing you about this, halfway down the stinking page, & got cut off from it.  Lost it!!  WANT TO SCREAM! 

  Anyway, I was just saying that my seizures started when I was 3, I'm now going on 38 in July.  I have a 12 yr old son that the dr's always told me I couldn't (my angel baby).  I feel truley blessed.  My seizures were mild before having him then went into a tailspin, just crazy.  I started falling (not grand malls) just falling.  They are getting a little better now that I've started taking Vimpat about 4mths ago. 

  Back to why I wanted to e'u about, they are not always detectable.  Mine weren't, they still are not.  Don't be scared about it, they are machines-these are our brains, much more complicated-lol :)  With what we have, you've got to have a sense of humor.  When I go up to the desk at a store w/my helmet on & they ask why, I explain quickly & w/a sense of humor & they respond very cool like & I get a wonderful look.  Feels good. 

  Well keep u'r head up.  God bless.

                                                               Kimberly.

Re: Help, can I stil have seizures with normal EEG

hi galaxymel, my name is Felicia. I was diagnosed with epilepsy at the age of 10.  I am now 37.  I suffer from grand mal seizures, always have. There have been several times that I was taken in for an EEG and came back with either "there are no signs of epilepsy" or "your EEG shows no seizure activity". Talk about makes you wanna scream. Used to make me feel like I was going crazy.  You are not alone in this one. Keep your head up and have faith. God bless.

Re: Help, can I stil have seizures with normal EEG

Yes, unfortunately, you can still have seizures with a normal EEG. I've had TCs for 38 years now and don't know what the cause is.  CT scans, MRIs, PET scans, ambulatory EEGs...no abnormal results. If you don't know what's wrong, you can't fix it!!--that's what bothers me the most. All you can do is take your meds, take care of yourself and hope one day a new diagnostic test will be able to give you the answer.  Take care, Teresa

Re: Help, can I stil have seizures with normal EEG

I have had seizures for over 65 years. I have had so many EEG test that I can not even remember how many. All of them came up showing there was nothing wrong, except the last one. It showed something in the tempor(might be spelled incorred) lobe. It was my left one. I have also had a C-Scan and it showed something. I use to think I was a monkey when I would go to the doctor. They did not know or should I say they had no proof. I as a teenager did not want to take medicine the rest of my life. It was very hard on me. When I was a teen ager I must have had 11 or 12 a day. I would have a fearful oral come across me before I had one. I can remember not blanking out, but I could never talk ....then it got so I could never talk....then ....still having the oral and feeling like my heart was going to pump out of my chest....my mind would go blank, yet I never fell. After my first child I had so many a day that I was afraid to pick up my child. I use to say that I wished I never felt them coming on. This was the oral was so fearful...I was not afraid of the seizure...just the fear I had and would have the fear last after I came to. I have had grand mal also...not a lot...but did not know I had even had one when it was over.....but I know now. I still have them today with no medicine not keeping them from occuring. I have them just about once or twice a month. I am sure that after I am dead and gone there will be some kind of cure, but I am tired of being that monkey. What I take is medine that was given to patience years ago. It works for awhile...better than anything else. The best thing for me is to be out and around other people even though I might feel bad. Why? I do not know. I often feel like I am going to have one early in the morning and if I can shake it off I will not .....in most cases have one the rest of the day.  The full moon often bothers me and my period use to when I was young. I had an uncle that had them and fell from the barn and killed himself, so I always try and be in a safe place. If I am in the kitchen I will go to the living room and I must know that I can not make it sometimes and will find myself sitting in a chair between the kitchen and living room. You learn as you go what is safe and what is not.  I know I got off of the subject, but just had to write. Good luck to everyone that is fighting epilepsy of some kind or another.

Nancy Smith

Re: Help, can I stil have seizures with normal EEG

Hello everyone I've had epilepsy since I was 3 years old, I was diagnosed with having idiopathic epilepsy,  i'm now 27 years old, all my EEGs have come back normal but I still continue to

 but yet and still I continue to have tonic clonic seizures as well as partial ones and some other kinds a well, my new neurologist brought up vagus nerve

stimulation as a treatment but i'm worried that since my EEG has been normal thus far that I will no longer qualify for

the surgery today is October 17th 2013 I was admitted on Monday October 14th and so far no seizures have happend

I seen my neurologist  last on September 12th 2013 and at that appointment he showed me my MRI which clearly showed 

abnormalities in the left temporal lobe area so my concern is that since the EEG is showing normal I wont get the surgery I have taken so many anticonvulsant medications and for once i want to be given the chance to try something new so I hope that I can get the VNS because I'm tired of all the drugs and there side effects I want a chance at a better quality of life for me and my children I've taken so many drugs and its time for a change I believe vns is the best treatment for me. So im praying that the MRI scan is enough for my neurologist to convince the bored  of neurologist that the vns surgery could help me and that I would be a good candidate for it, plz friends pray for me :) I see my neurologist again this Tuesday October 22nd 2013

Re: Help, can I stil have seizures with normal EEG

Hello everyone I've had epilepsy since I was 3 years old, I was diagnosed with having idiopathic epilepsy,  i'm now 27 years old, all my EEGs have come back normal but I still continue to

 but yet and still I continue to have tonic clonic seizures as well as partial ones and some other kinds a well, my new neurologist brought up vagus nerve

stimulation as a treatment but i'm worried that since my EEG has been normal thus far that I will no longer qualify for

the surgery today is October 17th 2013 I was admitted on Monday October 14th and so far no seizures have happend

I seen my neurologist  last on September 12th 2013 and at that appointment he showed me my MRI which clearly showed 

abnormalities in the left temporal lobe area so my concern is that since the EEG is showing normal I wont get the surgery I have taken so many anticonvulsant medications and for once i want to be given the chance to try something new so I hope that I can get the VNS because I'm tired of all the drugs and there side effects I want a chance at a better quality of life for me and my children I've taken so many drugs and its time for a change I believe vns is the best treatment for me. So im praying that the MRI scan is enough for my neurologist to convince the bored  of neurologist that the vns surgery could help me and that I would be a good candidate for it, plz friends pray for me :) I see my neurologist again this Tuesday October 22nd 2013

Re: Help, can I stil have seizures with normal EEG

How many of us have heard: “Your EEG is normal. You’re fine..” (“It’s all in your head?”)
I know of people who have had 5 EEGs, only to be properly diagnosed when they finally had Video EEG Monitoring. So if someone is trying to pass you off or is ignoring your symptoms, perhaps you should become a little more familiar with your diagnostic options…

Beyond EEGs…Diagnostic Tools for Epilepsy

http://epilepsytalk.com/2010/09/13/beyond-eegs%E2%80%A6diagnostic-tools-...

Phylis Feiner Johnson
www.epilepsytalk.com

I freaking love you all!

Thank you galaxymel for asking this question! I was starting to feel crazy! I have had two normal EEGS and I'm not about to let them give me another one. Sleep depravation the seizures no thank you! They tried to tell me I was have pseudo seizures! ha! They gave me some keppra and I haven't had a seizure since then. Its only been a few weeks but I won't give up! I have come to the conclusion that these doctors are practicing medicine and NONE of them are God. I hope its ok to say that I am praying for you all!

 

Mollz