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First seizure at 19
Wed, 03/06/2019 - 03:04Topic: Share Your Story
My name is Shaka, a 21 year old. I had my first seizure when I was 19 years old and was fast sleep when it happened. So there I was feeling tired, so I went to bed...that's all that is ever clear to me. I woke up surrounded by my family who were telling me to just relax, i got a 'fitz' and they'd take me to the hospital. I had no idea what to think because I was confused and had a headache so I just went with it. At the emergency room we were told that nothing was wrong with me. Months after this, I had another episode; and yes, i was sleeping. However, this time the hospital ran further testing. I did a CT scan and some blood work, but everything was normal. Up until this point in time I had never even heard of epilepsy, and was sooo confused when I was diagnosed with it.
I started to see a neurologist frequently(who was even more confused that my first seizure was at 19 and when at rest), had an EEG scan done (it was normal), went on medication (still got seizures) but the side effects were unbearable and I became depressed (considered suicide multiple times). After trying multiple medications (including Dilantin, Tegratol, Valporate Acid, and Keppra) I took myself off of the medication. Now I get seizures approximately every 2 months, had my last episode last week and hit my eye so hard it was swollen shut. This should all be stressful, but it really isn't. I survive day by day by some strange hand of fate. I'm off of medication and can complete all activities of daily living, I'm a university student, I can use public transportation on my own and am generally a very independent person. But it continues to baffle me as to why I get seizures. I have no known triggers (perhaps lack of sleep), I do not get auras before episodes, and medication just turns me into a 'zombie'. Any advice would be nice.
Comments
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In year 2004, I started to
Submitted by philip k on Mon, 2019-05-13 - 04:27
In year 2004, I started to have convulsive seizures at my freshman years in the university. After my second convulsive seizures within 5 days after the first one, I had done the EEG test, and then was diagnosed with epilepsy. I still had so many seizures within a week with the AEDs. I had many side effects from the meds, lost my jobs, driver's license, and ability to focus on studies at school. I took years off from the university. My neurologists told me he could not find what cause the seizures for me and it is dangerous many times because many seizures lasted more than 5 minutes and had multiple seizures at a time waking up in an ambulance or at the ER. I was only suggested surgical treatment to implant a device to control my seizures, which I did not want to do at the time. So after 3 years of trying AEDs, tests, following guidelines and advises from my neurologist, I tried to search for alternative treatment. I had taken different approach to control my seizures and finally after 6 months of alternative treatment, I became AEDs free, and seizure free. My neurologists could not believe my seizure was controlled without AEDs, and without any surgical device implantation. I asked him to sign release so my driver's license could be reinstated, but he told me he can not do it in short period of time. I went back to see him again in 2010, almost 3 years after not taking any AEDs and with no episode of seizures. After going through many exams thoroughly, he signed a medical report for me to get my driver's license back. He told me he had never seen anyone like me who had severe uncontrolled seizures becoming better in 6 months. He told me it is like a miracle. I had horrendous life with seizure. I know what people feel with seizures in their life. Sometimes I felt I was weak, and had so much frustration. I had no hope for better future at the time. After the alternate treatment I had, I found hope and healthier me. It is now 2019, and I am still seizure free, and meds free. I want to help people who have similar issues. I had helped 2 other individuals who also had seizures for more than 20 years. I can not guarantee 100% effectiveness for all types of seizures but when it works it works like magic. If you would like more info, let me know
I started having seizures out
Submitted by GruGruxQueen on Wed, 2019-03-06 - 21:34
I started having seizures out of the blue in 2003 when I was 27 and they have no idea what caused them. I'd taken all sorts of meds at first because the side effects were too bad. Right now I'm taking Depakote, Keppra, Lamictal and I have a Vagus Nerve Simulator. I almost never have any sort of aura before a seizure and I might not even know that I've had one unless there is someone there to see it. One of the two biggest seizure triggers for me are lack of sleep and stress. I'm glad that you really don't let the seizures rule your world. Many people can't do that.