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Is anyone NOT medicating for Absence Seizures?

Wed, 02/03/2010 - 14:14

HI - our daughter was diagnosed over the summer with Absence Seizures. Her pediatric neurologist has recommended starting her on Ethosuximide. She has assured us that the side effects are primarily "upset stomach" and that can remedied by taking the medication with food.

 We are new to all of this and quite overwhelmed. Currently, these seizures are not interferring with her school work, behavior, or social activities. Since it is most likely that she will "out-grow" them we are reluctant to start medication.

 Is there anyone "out there" who has never medicated OR started the medication and then stopped it b/c of the side effects?

We don't want to make the wrong decision. Thank you for any insight.

Comments

Re: Is anyone NOT medicating for Absence Seizures?

Submitted by helling1111 on Wed, 2010-02-17 - 10:22

Our 8 year old daughter has been having absence seizures for about 8 months. We went to a naturopath for guidance regarding diet, environmental factors, etc. She recommended 400 iu of Vitamin E - our pediatric neurologist basically said "it won't hurt anything".

The biggest help our naturopath provided was starting our daughter on 3 mg of Melatonin. She was taking 2 hours to fall asleep and the Melatonin has reduced that to about 30 minutes. We know that sleep is critical, so I feel good about that. Even her neuro. said "I prescribe Melatonin all the time".

 Like you, we are trying to balance the pros/cons of medications. Our doctor recommended Ethosuximide. We haven't tried it yet.

Our 8 year old daughter has been having absence seizures for about 8 months. We went to a naturopath for guidance regarding diet, environmental factors, etc. She recommended 400 iu of Vitamin E - our pediatric neurologist basically said "it won't hurt anything".

The biggest help our naturopath provided was starting our daughter on 3 mg of Melatonin. She was taking 2 hours to fall asleep and the Melatonin has reduced that to about 30 minutes. We know that sleep is critical, so I feel good about that. Even her neuro. said "I prescribe Melatonin all the time".

 Like you, we are trying to balance the pros/cons of medications. Our doctor recommended Ethosuximide. We haven't tried it yet.

Re: Is anyone NOT medicating for Absence Seizures?

Submitted by hnubtshiab on Wed, 2010-02-17 - 11:41

I was diagnosed with petit mal seizures when I was 16 although I had had them since I was 7-8 years old. Prior to my diagnosis my previous doctors were confused about what was wrong with me diagnosing me with everything from asthma to panic attacks (I gasp for breath and look scared/worried when I have my seizures). My doctors also told me I would likely grow out of them but I still have seizures. I was on tegretol and then trileptal for about 2-3 years and then I stopped taking my medicine against my doctor's recommendation. I was and in many ways still am in denial about my seizures.

At 25, I am still having seizures although they only occur in spurts every 2-3 months. I have been off of medication for 6-7 years now. It does not seem to have interfered too much with my ability to function. I graduated from college, have been able to hold a full time job, and am now in graduate school. I am choosing to go back to see a doctor again because I am concerned that my seizures may get worse. I am also concerned about my memory. I have trouble retrieving information. I feel horrible when my husband asks me if I remember an event we shared together and I am completely blank as to what he is referring to. I am embarassed when my classmates ask me about something we discussed in class two days ago and I although I seem to remember talking about it I can't for the life of me figure out the details until they tell me.

I haven't seen a doctor in years but am going back to see one next month. I don't know if my memory would have been better had I stayed on my medication. I am worried though that the lack of medication has allowed my seizures to continue and my memory has continued to decline. 

I have no recommendations or information to share. Only my story. Good luck. 

I was diagnosed with petit mal seizures when I was 16 although I had had them since I was 7-8 years old. Prior to my diagnosis my previous doctors were confused about what was wrong with me diagnosing me with everything from asthma to panic attacks (I gasp for breath and look scared/worried when I have my seizures). My doctors also told me I would likely grow out of them but I still have seizures. I was on tegretol and then trileptal for about 2-3 years and then I stopped taking my medicine against my doctor's recommendation. I was and in many ways still am in denial about my seizures.

At 25, I am still having seizures although they only occur in spurts every 2-3 months. I have been off of medication for 6-7 years now. It does not seem to have interfered too much with my ability to function. I graduated from college, have been able to hold a full time job, and am now in graduate school. I am choosing to go back to see a doctor again because I am concerned that my seizures may get worse. I am also concerned about my memory. I have trouble retrieving information. I feel horrible when my husband asks me if I remember an event we shared together and I am completely blank as to what he is referring to. I am embarassed when my classmates ask me about something we discussed in class two days ago and I although I seem to remember talking about it I can't for the life of me figure out the details until they tell me.

I haven't seen a doctor in years but am going back to see one next month. I don't know if my memory would have been better had I stayed on my medication. I am worried though that the lack of medication has allowed my seizures to continue and my memory has continued to decline. 

I have no recommendations or information to share. Only my story. Good luck. 

Re: Is anyone NOT medicating for Absence Seizures?

Submitted by pkstinn on Wed, 2010-02-17 - 12:11
Regarding memory difficulties with your grad school studies...I stopped my seizure meds, too for awhile. I also stopped working (loss of coping skills) and stopped driving for fear of seizures. I didn't acknowlege my seizures again until I wanted to earn a post-grad degree. The memory difficulties you describe are familiar to me! I ignored seizure reprecussions (tongue bites, inner-cheek sores, broken teeth from nocturnal seizures). However, when I failed to recall material from studying I went back on meds (Dilantin). And my recall improved drastically--I aced the class--which was 98% memorization of terms/definitions! Best of luck...

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