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nikki1182
New Member


Date Joined Jun 2009
Total Posts : 3
   Posted 6/24/2009 11:33 PM (GMT -7)   
Hi all,
 
Im a new member and have so many questions but i would more then anything like to chat with someone who knows that this is all about.
 
I had my first seizure in December of 2009 (while i was sleeping, my boyfriend drove me to the hospital I had no clue was was going on) and just had another, randomly, this June (while i was walking, my boyfriend said he realised what was about to happen and got me to lay down and held my head) In December I had an EEG and other tests that showed nothing wrong. Now with this most recent seizure im scared and getting head aches randomly. I cant drive and my carreer requires me to be able to drive. Its so stressful and I would love some feedback on others stories and how things went and how you are now.
 
I keep reading online that people can have seizures but never show anything wrong when tested...how is the right?
 
ALSO...its a bit weird and this may not make alot of sense but it is so hard to explain. Every once and awhile (avg. 1 a month) I get this super odd feeling. I can be walking, driving, watchin TV, doing whatever! and I get this sensation where its like a little story is playing in my head, its the same all the time, but i cant remember it after the fact, even now i couldnt describe it. it lasts anywhere from 10-35seconds. nothing happens after it i go on with my day and just forget about it. The only reason im bring thing is up is because JUST BEFORE my latest seizure I had this feeling. DOES ANYONE HAVE ANY CLUE OF WHAT IM TALKING about? I know it sounds nuts, But i have no other way of describing it.
 
thanks!
 
anything helps!
 
-N

aushtins-hockey-mom
New Member


Date Joined Jun 2009
Total Posts : 6
   Posted 6/25/2009 5:41 AM (GMT -7)   
Hey nikki1182,

It is perfictally normal when your EEGs come back normal most often they do, your seizures are most likely triggered by something else other than flashing lights or hyperventlation. My 16 year old son has sevear Epilepsy and his EEGs never come back normal because his are easly triggered. His on 400 mg twice a day dayly of limictol. And I know exactally what your talking about. My son has complained of the same thing. He has grand mall, drop, and absont seizures where he stairs off and blanks out into space for a few seconds. You can't drive because you may have a seizure while driving and cause a serious acadent hurting yourself or another. Don't worry! Take care!

dabomb
New Member


Date Joined Nov 2008
Total Posts : 18
   Posted 7/1/2009 6:59 PM (GMT -7)   
If ur still having headaches i would ask my doc about topamax it is for migraines and works great in combination with other medication<s>. what med.(s) do u take?

nikki1182
New Member


Date Joined Jun 2009
Total Posts : 3
   Posted 7/5/2009 12:17 PM (GMT -7)   
thanks for the replies!!!

West Coast Canucks
New Member


Date Joined Aug 2009
Total Posts : 4
   Posted 8/14/2009 10:04 AM (GMT -7)   
I don't know much, but we do have some things in common.  Hope it helps.
 
I suffered hypoxia at birth, and had grand mal seizures as a small child when I had a fever, until school age.  I was in the clear for over 15 years until out of the blue I had a grand mal in college.  Like you, my EEG was also clear, the only reasonable explanation was hypoxia so they put me on dilantin and left it at that. 
 
Worked well for 25 years, only a couple seizures and that was when I let myself get run down.  Cannot stress enough, be sure to get enough rest, especially in times of stress.  All my seizures were when I was tired.  Don't drink excessively.  Completely avoid non-prescription drugs.  That much advice I can offer based on both doctor advice and personal experience.
 
This summer I have had 3 seizures, after ten years of complete health.  Doctors are speculating that the dilantin is not working properly anymore.  My med is being changed, and am having MRI to rule out cyst or tumour.  You mentioned that you have headaches,  has your doctor considered an MRI?
 
Have you seen a neurologist?  Many times doctors cannot definitely pin down a cause for seizures, but commonly can control seizures with drugs.  I know what you mean about not driving, it is a major problem.  However, in the past things have always worked out after a year or so, and I hope they do for you too.
 
Best,
Burnt_Orange_2 
 
 
 
 
 

Getting Old
New Member


Date Joined Aug 2009
Total Posts : 4
   Posted 8/15/2009 9:00 PM (GMT -7)   
hello nikki
we have similar type seizures. i've been living with the super odd feeling (petit mal) seizures (4 /5 a day) all my life. the neurologist i see tells me i have classic epilepsy. i've also had grand mal seizures (lost drivers license) but once properly diagnosed, medication has controlled both.  i drive and lead a normal life.
 
see a good neurologist.
 
getting old

bell73
New Member


Date Joined Aug 2009
Total Posts : 3
   Posted 8/18/2009 2:21 PM (GMT -7)   
i've had both petit and grand mal seizures. there are many different types of seizures. in my experience, most neurologists haven't been terribly helpful in educating me about what's happening to me, they just push meds (which wouldn't be that bad if the meds controlled the seizures). i have educated myself with the internet. webmd is a good place to start.

the weird feeling you describe sounds a lot like what i experience. do you have a smell or taste before it happens? i also sometimes feel warm and my heart starts to race.

you might want to write down everything you've experienced and take that with you to the neurologist.

good luck!

bluecreamsherry
New Member


Date Joined Aug 2009
Total Posts : 3
   Posted 8/25/2009 5:32 AM (GMT -7)   
those odd fellings you get could be auras trying to worn you a seizure is about to come and you were talking about the doctor could not find anything same with me but they did find 1 1/2 years ago when getting me ready for brain surgery they had the mapping inside my head when they found I was having seizures when eating watching tv but I was not showing them on the outside just my brain talk about weird but you can have these kind

Stella Marie
Veteran Member


Date Joined May 2005
Total Posts : 601
   Posted 8/25/2009 1:15 PM (GMT -7)   
That odd sensation is an aura. Epilepsy is like an electrical shortage in your brain. It can occur in different areas and depending on the area and features of the seizure, that usually indicates what type of epileptic seizure you are having. Depending on the area of the brain affected, auras can be smells, tastes, sounds, or even visual. You are lucky if you have an aura, it is like an early warning system for a seizure. You brain's electrical current (measured by an EEG) or brainwaves are usually normal when nothing is happening. The only way they are able to actually diagnosis epilepsy from an EEG is if they catch this electrical shortage or seizure happening during the EEG test. Most seizures do not happen during short EEG tests. Most epilepsy is diagnosed from what you and those who have watched you have the seizure tell the doctor. One seizure does not equal a diagnosis of epilepsy. You have to have more than on seizure and rule out organic problems like brain tumors then it is more likely to be epilepsy.
You need to see a good neurologist or even better a neurologist that specializes in epilepsy called an epileptologist. Now that you have had more than one seizure you can discuss treatment and medication options. Once you find the correct treatment and go 6 months without a seizure, you will be able to drive again. Do not give up. Find a doctor the specializes in treating seizures not just any joe blow neurologist.

Good luck.

Stella Marie

Co-Forum Moderator for Chronic Pain

Rare neurodegenerative /movement disorder called “Multiple System Atrophy”.  Mobility issues,, neuropathic pain,  spasticity, central apnea, collagenous colitis, joint and body pain, swallowing and respitory  involvement,  Implants: intrathecal pump  & neurostimulator.  Extra features: O2 & wheelchair

 Not all of us can be Cinderella, but some of us can be Fairy Godmothers.......

 


Crush
New Member


Date Joined Oct 2009
Total Posts : 3
   Posted 10/8/2009 1:14 PM (GMT -7)   
Hi Nikki I have epilepsy since i was 18mths old. I get auras before most of my seizures. They vary from light headedness, dizzy, nausea, double vision and I almost feel as if I am starting to get buzzed from alcohol but haven't drank anything. I am taking lamictal and zonegran. I have gran mal and petit mal usually 1-3 a month. Make sure you write everything that you are feeling down before and after the seizure. I tend to gat migranes after a gran mal seizure and need to sleep in order to get rid of it.
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