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New to site but not to epilepsy; looking for answers

Thu, 10/12/2006 - 20:04
I first started to experience what I refered to as "spells" in my late years of middle school. At first I thought I stood up too fast or there was a weird reaction to allergy meds but the "spells" got increasing worse. I started to develope migrains right afterward and often had to rest in the nurses office. The spells could be mildly described as a de ja vu feeling, either a place in time, or a familar scene, then a rush of blood to my head where it felt like there a vice pushing outward, I felt lightheaded and almost faint as I burned from inside out with fever and regained my surroundings. Each spell would last for only 10-20 seconds but I would be drenched with sweat on my brow and pits. The spells came ritual to the point where I had my own supply of asprin in my locker and a note from the school board allowing me to carry it around. I was having anywhere from 3-20 spells a day. My mom came increasing worried about my reference to these spells and scheduled a appointment with our family doctor. The doctor of course found nothing, considering a physical these days consists of nothing more than a glance and a few fisher price like instruments. He refered us to a nerologist (sp?) who arranged an MRI, CAT, EEG and EKG, all of which turned out fine and put us in the poor house. I kept explaining that my spells did not happen under excercize, panic or lack of food, hell, they happened in my sleep! The doctor said I could go to a sleep clinic and try to document one overnight but the bills were too steep. I managed to deal with them one at a time until driving age. They happened on the road, in which I didn't tell my mother for fear of taking away my car. Luckily I didn't have any accidents although I never would lose conciousness (sp?). When appling for a job as a CNA at another hospital, I filled out the health evaluation and check that I had experienced dizziness and migrains. RED FLAG for health staff and I was marked for a special physical to be cleared for work. During the most comprehensive exam of my life the doctor determined, based upon my detailed description of my "spells" I was epilepic. I was deemed not in danger and cleared for work. He later called my mom to explain his diganosis and told her that I would most likely grow out of it, having fewer seizures as I matured. Well, I am 23 and the seizures did get better as time went on. In my late teens and early 20s I only experienced them a couple times every few months. Now they have returned and with even greater punch then I remember. Can anyone relate and what am I to do? I know it is only inconvient and the migrains are painfully annoying, but they really bother me none the less. Talk to me, let me know what you think.

Comments

Re: New to site but not to epilepsy; looking for answers

Submitted by Rebecca Brussow on Thu, 2006-10-12 - 20:41
Elysia, I can empathise with your situation, although it will never be exactly as you expereince it. I have been expereincing seizures since I was 2 years old. They began as absence seizures and developed into partial seizures as I got older. Once a teenager I had more complex partial seizures adn would have them during class, which everyone thought was hilarious. Lucky I had some suppotive friends. My parents initially were told that I would grow out of them by the time I became an adult. However in my opinion they are worse. I am now 30 and I now have Grand mal seizure of the tonic clonic variety and they come once every 2 weeks. Stress is a big cause as is my lifestlye in general, which is hectic and full on. But then I'm not going to live a boring life either. Hormones is another trigger. Fortunately I only have them in my sleep now, which has allowed me to obtain my drivers licence. I live in Australia and there are strict conditions here when it comes to driving. I am a social worker and it is difficult to get a job if you don't have a drivers licence, so it was tough going for a while as I have only had my licence for 18 months. I am very positive when it comes to talking about my epilepsy as I have never let it get to me or stop me from living my life. I am getting married in January next year and my fiance is very supportive and understanding. First step is acceptance, second is having a good understanding of how it affects you and your life. Then it is about going out there and living your life and not letting anything or anyone stopping you! Best of luck.....Bec!

Hey Elysia, I am 25 and

Submitted by Bedge on Thu, 2006-10-12 - 20:47
Hey Elysia, I am 25 and relate to you completly. After 7 years I was only given a diganosis YESTERDAY! hahahha. Like you, i am upset with the medical system that I have been dragged through. It's very sad to think that this has been happening to us, and its been so hard to find proper help. Although my EEG indercated peaks in my left temporal lobe, my previous Neuro was still unable to put my symptoms and EEG together. It's kinda scary, hey! Mine has peaked three times over the last 7 years. At the moment I am in a really bad spot, and I am not working or functioning properly. I gave up smoking 13 weeks ago and 3 days later it all started again! Although my Dr isn't sure if the smoking has anything to do with it. I think these things can go up and down, just the luck of the draw I expect. At least we get a little break from it time to time. I feel your pain. It's a difficult road to walk down. But I feel I gained lots of strength and character out of this whole experience. :o)

Re: New to site but not to epilepsy; looking for answers

Submitted by Elysia on Fri, 2006-10-13 - 00:52
I have accepted the condition I am just afraid of my current condition turning into Grand Mal episodes like you Rebecca. I currently have only emergency room health care coverage and I am looking at more comprehensive medical plans. I also find it hard to explain the seizures to those who have never experienced them. Not to mention that this type of seizure is typically not "recognized" as a seizure by the public because it does not involve jerking movments, convultions or loss of conciousness. How many other people are not being diagnosed because doctors, parents and peers think it is a stunt, scam or self inflicted. It it all about educating people I suppose:)

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