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.
Desperate for advice or similar experiences please!!!
Mon, 10/01/2018 - 21:44Topic: Share Your Story
I need some help please. I am 30 (31 in November) years old (mother of two beautiful girls and pregnant with my third) about 2 years ago I started having auras everyday sometimes twice a day. I didn't actually know what they were. They would make me throw up right after I would have one as well. In October of last year I had my first seizure and woke up in the ER not knowing how I got there. From then on up until about March I had at least one seizure a month sometimes too with aura's every single day. I would be so scared to go to sleep because I knew when I would wake up I would have another aura. At the time like I said I didn't actually know that's what they were called. I seemed to only have the grand mal seizures at night while I was sleeping or right after I would wake up, I think only one of my seizures happened in the middle of the day. My last seizure was in June but I had about 3 months in between with no seizures or auras (consultant auras anyway, think I had 1 or two). I've already fractured part of my jaw which has healed on its own and broke a tooth. it's been about 4 months now and I haven't had another seizure and only 1 aura. It's not triggered by anything as far as lights or what people would consider the normal epilepsy triggers. They did an EEG scan when I went to the emergency room after having a seizure along with a CT scan I think that's the one where they only scan the brain. Anyway they said I had multifocal onset seizures. I've noticed that I could almost trigger an aura just by thinking about something that made me uncomfortable. At least that's what seemed to start them and I started to become afraid of thinking about anything that got me anxious. I am now taking Keppra well the generic version, I'm finally able to get in to see a neurologist on the 17th of October, I wasn't able to before because of my insurance. I would love some advice or any experience that anyone has with a similar situation. I don't think this is normal epilepsy.
Comments
Hi to be honest I don't think
Submitted by wmi3@aol.com on Wed, 2018-10-03 - 06:18
Hi to be honest I don't think there such a thing as normal Epilepsy .I mean there are so many types and even those have different affects on different people .My personal type is Tonic Clonic and I have had it for 21 years and its getting worse rather than better .I have had a neurologist pretty much from the start but than I live in England and its all free.I really am so sad for the situation you are in and the fact you have to bring two Daughters up with one on the way.I don't really have any advice worth knowing as if I did things would be better for me.I would say try not to worry too much as that in itself could cause a seizure in some people.I really hope things get better for you when you finally see a neurologist
I suggest you ask for
Submitted by bebop7 on Thu, 2018-10-04 - 10:04
I suggest you ask for Dilantin (Phenetoin) because it works well and has worked well for many years and I have read that Keppra does not work nearly as well for many people. ALSO your doctor can write your prescription for Dilantin ONLY and no cheap generic replacements / because your cheap chincee insurance company cares nothing about you and only want to save money on your care by giving you sub-standard medicine.
Focal seizures are really
Submitted by Amy Jo on Tue, 2018-10-02 - 10:41
Focal seizures are really common but they look/feel different depending on the areas of the brain involved. Your story sounds normal to me and I bet it sounds normal to many others here. Photosensitive epilepsy is only a small percentage of cases. Common triggers are poor sleeping, stress, illness... Put a list of questions together and have a friend/spouse come along with you because it's hard to take in all the information. Make sure you have a way to follow up with your doc about adjusting meds between appts and emergencies. I would expect a lot of questions might have to do with medication and pregnancy. Know that hormones can impact seizure control so what works during pregnancy could change after your body adjusts after delivery.