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.
New to all this
Wed, 08/09/2006 - 08:15Topic: Women With Epilepsy
Hi, I am a 28 year old woman who just started having seizures 4 1/2 months ago. I have complex partial that turn into gran mal. I have no warning and no symptoms b/f I go into a scary episode. I totally black out, shake, scream...the whole nine yards. This is all so new to me and frankly I used to be scared of people with epilepsy and now I am one! I am currently a high school counselor and needless to say this has disrupted mine and my husband, of almost 2 years, lives! It's crazy how I can have a Masters Degree in counseling and help kids through stuff like this all the time but when it comes to me...I'm sad, scared and confused! This is the worst thing that I have ever gone through. The uncertainty of not knowing when I am going to have one...not being able to drive...constantly being monitored by friends and family...not working and the list goes on and on...
I want to have babies and breastfeed them and be normal and now my Neurologist wants me to wait to get them more under control. I am currently on 3000mg of Keppra. It makes me tired, low sex drive and mushy brained. Also, my hair falls out?! Any one of you veterans have any thoughts or advice?
Comments
Re: Re: New to all this
Submitted by Ihateseizures on Tue, 2006-08-15 - 14:59
Thanks so much for your kind words and advice. I appreciate your thoughts and will speak to my doctor more about this and will definately try the Zinc.
Re: New to all this
Submitted by missmelissa on Sat, 2006-08-19 - 20:26
Hi! I am sorry for what you are going through. I didn't have any seizures until I was 27, and it was really shocking to me when they told me that I had epilepsy. In fact, I didn't believe them for a long time. One thing that I KNOW . . . you have to have an excellent relationship with your doctor. I have a wonderful family doctor and I have recently discovered a wonderful neurologist, and between the two of them, I can really sit and discuss the best treatment options for me. Not all of the epilepsy meds work for all types of seizures, but just because you have started on one treatement regimen, it does not mean that that is the best option for you. Tell your doctor about the undesirable side effects that you are having, and see if there is something better that you could take. My neuro explained to me that all of the drugs have some side effects, but every person reacts differently. You just have to find the drug that controls your seizures with the least amount of side effects that are undesirable to you. If your neuro will not talk to you about your concerns, maybe you could see if there is someone else who could see you. Not all doctors are created equal, and it is sometimes good to get a different opinion.
On another topic, after being diagnosed with epilepsy I was able to have and breastfeed three healthy children, so you should not feel as if that option has been taken away from you. You will just have to make sure and work closely with your neuro and OB/GYN. Good luck, and let me know if you need any more info.
Re: New to all this
Submitted by balletkat on Tue, 2006-08-15 - 09:31
I am sorry to hear that you are dealing with all this. I know how scary and overwhelming it can all feel. With Keppra making you tired all the time have you talked to your dr about that? When I was on Keppra I was very tired all the time too and the depression side effect that Keppra has hit me as well. Make sure your dr knows how you feel and be sure to wiegh out your feelings to find the difference in the life change vs med side effects. As far as hair loss, I have found that taking zinc helps. I take a multi vitiman, but I add on an extra 45mg (I think) of zinc a day. My hair is still fine and thin on top, but it doesn't fall out as much. I hope some of this helps and I hope that you have someone close to you to talk to who can help as well. Having someone listen is always a great thing in dealing with this.