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Recently diagnosed and scared

Mon, 02/04/2013 - 02:55
Hi, my name is Helen. About a year ago, I began collapsing randomly. After several tests and multiple diagnoses, my EEG tested positive for epilepsy. My seizures are specifically triggered by stress, and I also have physical triggers such as strobe lights and rapid/irregular heartbeat. Over the past year, my episodes have significantly affected my life. I can strongly say I'm worried about what the future may hold. I'm only 17 years old, and I'm scared. I do not know anyone personally that has my diagnosis, hence my reaching out to this website. I've recently been having memory loss and severe headaches. I am on 200 MG of Lamotrigine a day. Any advice/support is welcomed and appreciated. Best wishes xx

Comments

Re: Recently diagnosed and scared

Submitted by sprokit on Mon, 2013-02-04 - 13:05
I know exactly how you feel. I had my 1st seizure about 3 years ago. I had a bunch of tests which turned up nothing. The neurologist said it may have just been a one time thing. Then it happened again. So then they put me on 1000mg of Keppra 2 times a day and I couldn't drive for 6 months, which is hard when you have 2 kids and a house to run. The 6 months went by...no seizures...I thought GREAT!!! I followed up with the doctor, he said it would be best to stay on the meds for life and I could start driving again so I thought I could put it all in the past. But 2 years went by and it happened again, while I was on the phone, in my kitchen. I whacked my head on the counter and woke up to a house full of people. A couple hours later, it happened again. So I went back to the neurologist. He said I probably just needed an increase in my meds. Which brings me to last week. I was hugging my 11 year old son and a smelled something funny and suddenly got dizzy and sat down and once again, this time in front of my son and my 10 year old daughter it happened again. Needless to say, it was traumatizing to my kids to watch. They had never seen it happen before. Now the doctor had added Topamox 2 times a day. I have gone thru so many emotions over the last couple of years. The best you can do is to keep your head up and hope for the best. Things have a way of working themselves out. Let everyone know how you feel. Don't keep it in. I am usually the strong one in my entire family but I found that this time I have to let everyone be there for me for once.

Re: Recently diagnosed and scared

Submitted by helenrachelb on Mon, 2013-02-04 - 19:34
My goodness, I feel for you and your experiences. That must have been hard to have your kids witness you at your weakest point. But now when they see you, I'm sure they look at you as the strongest woman in the world. I may be new to the whole "epilepsy community," but I've always been optimistic. To your kids, I'm sure you're a hero. I understand where you're coming from when you discuss your emotions, I have been all over the place this past year. It has affected many if not all aspects of my life. But I've learned that you can't "deal" with epilepsy, you simply have to "grow" with it. If you ever need to talk, I'm always here. Thank you for your advice and kind words.

Re: Recently diagnosed and scared

Submitted by irishmom23 on Tue, 2013-02-12 - 13:27

My 15 year old daughter was diagnosed with JME in November 2012 after having only 1 tonic-clonic seizure.  We thought this was crazy, but come to find out - she had been having the myoclonic jerks and absence seizures for about 6-8 months prior to that.  We live in a very small community, and word spreads fast, but people cared about her, and were concerned.  The more people asked, the more stories we heard about others who had epilepsy, and/or had had seizures in the past.  We had never ever discussed seizures with anybody, knew anyone who had one, or was epileptic.......since that time, we haven't stopped hearing from people, and they want to hear from us.  Please, do not feel like you are alone.  Though you may have different triggers, symptoms, and medication, you are experiencing the same emotions, fears, and frustrations that others are also experiencing.  I have spent hours researching, reading, and looking for answers and "fixes", only to finally accept that WE can only take one day at a time with my daughter. 

I encourage you to reach out to someone - a school counselor, friend, family member, church, online, or even your local clinic or health department.  There are lots of resources available to us, that we don't really know about. Take it one day at a time - and remember that we're in the boat with you.  :)

My 15 year old daughter was diagnosed with JME in November 2012 after having only 1 tonic-clonic seizure.  We thought this was crazy, but come to find out - she had been having the myoclonic jerks and absence seizures for about 6-8 months prior to that.  We live in a very small community, and word spreads fast, but people cared about her, and were concerned.  The more people asked, the more stories we heard about others who had epilepsy, and/or had had seizures in the past.  We had never ever discussed seizures with anybody, knew anyone who had one, or was epileptic.......since that time, we haven't stopped hearing from people, and they want to hear from us.  Please, do not feel like you are alone.  Though you may have different triggers, symptoms, and medication, you are experiencing the same emotions, fears, and frustrations that others are also experiencing.  I have spent hours researching, reading, and looking for answers and "fixes", only to finally accept that WE can only take one day at a time with my daughter. 

I encourage you to reach out to someone - a school counselor, friend, family member, church, online, or even your local clinic or health department.  There are lots of resources available to us, that we don't really know about. Take it one day at a time - and remember that we're in the boat with you.  :)

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