Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

I had epilepsy from the age of 13 until 18, I'm 35 now and EEG showed positive

Sun, 11/07/2004 - 15:56
I had a total of about 6 or 7 seizures in my life from age 13-18. At the age of 20 I was taken off my medication after an EEG showed negative for any sign of epilepsy. Lately I have had trouble remembering and with concentration at work especially. For the past year or so I have been dizzy and tire out very easily. If i squat down I have to hold onto something or I will fall over. I have not had any seizures since age 18, but I am now concerned about them starting back up again. Anyone know of this happening. Thanks.

Comments

RE: I had epilepsy from the age of 13 until 18, I'm 35 now and E

Submitted by tibet2 on Sat, 2004-06-12 - 23:50
hi paul, sorry to hear you aren't feeling well. for starters you need a thorough physical to rule out non epilepsy causes to your symptoms. what you describe could be a cardiac issue... or related to something else. but something is going on - you shouldn't be feeling this poorly. so first things first - get a good thorough physical, complete with blood work. be sure to tell the doc about your current symptoms and about your past diagnosis of epilepsy. you could be having nocturnal seizures and that is why you are tired and can't concentrate well. often seizures will happen during the night.... and unfortunately they are not seen for what they are and go untreated. but their effect is very real..... yes - people can have an active seizure disorder that seems to go away, only to return years later. in fact, that is the pattern for mesial temporal sclerosis.... seizures in childhood that remit during adolesence, only to return in young adulthood.... because that happened to me - seizures probably since 6 (but definitely since 10) through 16 and then a glorious 4 year stretch with no seizures and then seizures since i was 20 - i assumed i had mesial temporal sclerosis.... but i don't. what kind of seizures did you have as a child? are you driving? whatever the cause of your fatigue and lack of concentration and dizziness.... it doesn't mix well with driving. so get an appointment with a doctor as soon as you can. there are so many possible reasons for why you are feeling as you are - that i would waste no time getting in to see a doc. the referrals to any specialist s/he may want you to see will take time... so you might as well get a jump on the process. once you know what is causing your problem and start treating it you will likely be feeling better soon. not investigating the cause of your symptoms only adds to your stress and makes you feel worse.

RE: RE: I had epilepsy from the age of 13 until 18, I'm 35 now a

Submitted by PaulGS on Sun, 2004-11-07 - 10:54
Thanks for the information. I have since had many, many tests. I had a CT Scan which came back normal, I found out that the dizziness & numbness in my arms was from a pinched nerve in my shoulder/back. I went to physio therapy and that cleared this up. I also had testing for Adult ADHD and found that I showed some signs of this being present. They decided not to label me because I would be unable to take meds for it because of my seizure history. I saw the nerologist again and he advised that since I have had no seizures he would not consider that I have epilepsy at this time even though the EEG shows presence. He will not treat me with meds until I actually start having seizures again (which might not happen). I have severe allergies and slight asthma. I am now taking allergy shots to try to get these under control again. The part that troubles me is that I am still exhaused, black under the eyes and never feel rested, and therefore have a hard time concentrating and become angry easily. I have a lot of wacky dreams at night (some of which can be caused by the drug I am taking for my lungs), but I have them even when I don't take these pills. Most of my dreams are of suffiction, but I have had a couple where in my dream I collapsed on the floor and can't speak, and nobody would help me. This felt very real.How can you tell if you are having seizures in your sleep??? The nerologist told my wife what to watch for if I were having absense seizures during the day, but how would I know at night? I'm confused. If you or anyone else out there can relate to this in any way, please give me some feedback.thanks,paul

RE: I had epilepsy from the age of 13 until 18, I'm 35 now and E

Submitted by Kendra on Sun, 2004-11-07 - 15:56

Hi Paul - Similar situation - I had seizures from age 8-10 and then was off medication and seizure free for 28 years.  However, I have always had the same sensations as you do when I bend over or squat down to tie the kids' shoes - I feel light headed and dizzy though just for a few seconds and have to hold onto something or I lose my balance.

On Oct. 22nd, I had a grand mal seizure on a plane and have in the past week been diagnosed with Epilepsy and started on medication.  I'm not saying this because I think your prone to seizures, rather only because I think what we've experienced is similar.  It's just such a nebulous and elusive condition.  I find myself grasping for answers or common ground with anyone.  I'm glad I found this site because it has helped me immensely in the past week.

I sincerely hope your seizures are not starting again.

 

 

Hi Paul - Similar situation - I had seizures from age 8-10 and then was off medication and seizure free for 28 years.  However, I have always had the same sensations as you do when I bend over or squat down to tie the kids' shoes - I feel light headed and dizzy though just for a few seconds and have to hold onto something or I lose my balance.

On Oct. 22nd, I had a grand mal seizure on a plane and have in the past week been diagnosed with Epilepsy and started on medication.  I'm not saying this because I think your prone to seizures, rather only because I think what we've experienced is similar.  It's just such a nebulous and elusive condition.  I find myself grasping for answers or common ground with anyone.  I'm glad I found this site because it has helped me immensely in the past week.

I sincerely hope your seizures are not starting again.

 

 

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.