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.
Still in denial
Wed, 11/29/2006 - 00:26Ok I've been having symptoms of simple partial and complex partial seizures since around May of 2005. At first I thought it was a panic attack or just stress even though I have a degree in psychology and know the symptoms of panic attacks and I had none of them. I had moved far away from home for the first time and was still adjusting so I thought I was just stressed from that. They kept getting worse and I didn't like where I was living much. I liked being away but just didn't like the state I was in so I moved back home thinking that would make it all go away. It didn't. It just continued to get worse. I finally talked to my doctor about it and he told me it definitely wasn't stress or a panic attack. He did a blood test, CT scan and EEG. They all came back normal so he referred me to a neurologist who did a sleep deprived EEG which also came back normal. I didn't like that neurologist much so I had my primary doctor refer me to a doctor who specializes in epilepsy. He did a MRI and put me on Trilepital. I had an allergic reaction to that med so he put me on Keppra and then later added Lamicatal to help with the side effects of Keppra. As long as I take my meds I'm fine. No seizures. After I had been on the meds for a couple of months my doctor did a 48 hour ambulatory EEG which came back normal. He was surprised but said the medicine must be working good for me. I don't understand why he didn't do the EEG before putting me on meds so maybe he could find something. I don't understand why this is happening to me. I have no family history, no recent head injuries and no infections. I thought maybe it was stress but if it was then I guess the medicine wouldn't work for me. I stopped taking my meds for a few days a couple of weeks ago. I was fine for three days then I had about four simple partials during the day then apparently I had a bad seizure in my sleep because I woke up feeling confused and disoriented and my tongue hurt. I knew I had had a seizure because I felt like I do after I have one. I usually am aware of when I have a seizure I have never blacked out, but I didn't remember anything. I just turned over and went back to sleep. The next morning when I got up there was blood all over my pillow and my tongue looked like I had bit a chunk out of it. In fact its still numb in the corner of it even after two weeks. I started taking my meds again after that. I guess it was stupid to go off in the first place but I was really hoping it was just caused by stress and it had finally gone away. Its just so hard to accept the diagnosis because all my tests have been normal. I don't understand what is happening to me and I have no one to really talk to about it. My parents change the subject if I mention it. I feel weird talking about it to anyone because no one understands what I'm going through plus there is still such a stigma attached to having epilepsy. Does anyone else have these problems?
Comments
Re: Re: Still in denial
Submitted by Peaches78 on Wed, 2006-11-29 - 14:03
Thanks for the reply. I am slowly coming to terms with my seizures. I had a head injury back when I was ten years old which my neurologist said could have caused all this. I don't understand why it would show up seventeen years later, but he explained to me about how the brain heals itself and it is possible for it to take that long to show up. I've been trying to educate myself about all this. I already knew a lot of things about seizures because I work with people who have seizure disorders, but most of them have tonic clonic seizures. It seems to me its hard to tell when a person is having a simple partial or complex partial seizures because most of mine have sensory symptoms that only I notice. Unless someone knows what to look for my seizures can easily go unnoticed by everyone. It just looks like I space out for a little bit, or so I've been told. I've never seen myself have one. :) In my search to educate myself more I learned about psychogenic seizures and I guess I was afraid that was what was going on with me, but since the meds work it can't be that. I'm doing better with accepting it. I have Epilepsy, but it doesn't have me.
Re: Still in denial
Submitted by hmselby2 on Wed, 2006-11-29 - 12:42
Peaches~
I had a somewhat similar experience to you, or at least I can relate to wondering where it all came from. I just turned 33, and had never had any seizure symptoms (that I was aware of) in my life. Then about a year ago I went on an anti-depressant- Wellbutrin- and started having seizures. Initially everyone told me that it was just the medication that caused seizures, although I found it strange that a medication could cause a Grand Mal Seizure in a perfectly healthy person. I had an MRI and a sleep-deprived EEG after going off the meds, but unlike you, my EEG came back as showing that I had a seizure disorder. I am on meds now, and haven't had any simple-partial, or grand mal seizures since going on meds, but I continue to have myoclonic "seizures" all the time. But anyway, the one thing most people have said to me is how weird it is, that all of a sudden, seemingly out of the blue, I would develop a seizure disorder at 33 years old. But I have talked to several doctors and medical profesionals and they have told me that the brain is one of the organs that doctors just don't know that much about. They don't really know what causes seizure disorders, and there isn't really a "norm" that they can adhere to. I don't know if that will make you feel better, but at least you know you're not alone!
Re: Still in denial
Submitted by SaraOwens on Wed, 2006-11-29 - 10:43
Peaches, I know what you're going through. In 1995 I began having Grand Mals in my sleep, and no one knew why. There's no history of it in my family, on either side, and we were baffled. It took about a year for anyone to come up with a good theory, my epilepsy is from a head injury recieved in 1993. After my first siezure, me and my family started looking for the right meds. In that time, I did alot of traveling, and came to find the Epilepsy league of Idaho (there are leagues in every city that I know of). There I participated in a drug study, and found the perfect drug. I decided to move back to my beloved home in TN., but aftre doing so I did not check out any medical plan or even try to get new meds. For the next four years I abused myself, drinking (I had a boyfriend who was an enabler) and having seizures, in a major denial. I finally saw a light in 2001, and decided to take advantage of the health care plan the gov't offered (which is now nil, and I'm struggling) and got on meds. It was like I could see again! I quit my boyfriend (we're still friends), got a car, and a job, and my life has blossomed ever since. Now I'm married and have a 3 yr old boy, and I still don't like my epilepsy, but I've accepted it now. It takes a while to come to terms with the idea that there's something you can't control that influences your perception so intensely. It is about acceptance and denial for sure. These times are rough, but you're lucky to have found this site! Finding this site is what helped to solidify my acceptance of epilepsy. As far as others' opinions of you, epilepsy doesn't change who you are in your heart. It only invokes fear. It invokes fear in others, bcause they are uneducated on the subject. Ignore their looks and such, and become a teacher! Help them overcome the fear of something that is quite intriguing, actually. Epilepsy is on it's way to becoming well known, and it's all of us who help by educating others. Maybe if you google things you're interested in knowing, and just educate yourself, too, you'll feel better and more confident about this ailment that we all share. It helped me for sure!