New to epilepsy and feeling scared

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Jilian

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Hi. My name is Jilian and I'm 34 yrs old. I have 3 kids ages 10, 5 & 3. I had a pretty rough seizure a week ago. My H found me unconscious in the bathroom and it took 5 mins for me to come back. That led to an ER trip and a DX of seizures. I followed up with a neurologist and my EEG showed all sorts of abnormal brain activity so they started me on Keppra that night. I've passed out as a child 6 or so times so they suspect I may have had epilepsy all along.

This past week has been rough and scary. I've still been having arm tremors and I had a sleep seizure 2 nights ago. I haven't felt normal since that seizure last Saturday. And the exhaustion! OMG the exhaustion! I'm praying that it is just my body getting used to the Keppra and it won't always be like this.

So here I am...starting my journey with epilepsy. I look forward to hearing other stories and learning from and supporting everyone here. I'm so thankful to have found this forum.
 
Hi Jilian, glad you found us, because you've come to the right place for learning and support, but sorry that you're here. Hopefully now with the diagnosis it's a step closer to getting you seizure-free, and hopefully you'll adjust to the Keppra and it works for you!
 
Hey there Jilian, I too am new to epilepsy and know how great it was to find this forum and the responses to help me feel welcome, not alone, and not crazy or hopeless. So I too am sorry that you have to be here but am glad you can add to this community.
 
Hi Jilian and welcome to CWE!! Big hugs to you! I know how rough it can be and just know that you are amongst friends. Keppra is a sucky drug for many of us so if it turns out you just can't tolerate it (the side effects) don't be afraid to speak up and tell your Dr. because there are many others out there to choose from. It turned me into a raging lunatic. lol
 
Hi Jilian, you are among friends here. I hope we can make the journey a little less frightening for you. Welcome.
 
Hi Jillian, welcome!

Your fatigue is probably due to the seizures and their aftermath. They are physically and mentally exhausting, as is the whole process of getting an epilepsy diagnosis. You've had a busy week! Be patient -- you need some time to heal, as well as to process everything that's happening. Plus you have three kids!

If you can, make a note of everything that was going on in your life in the days/weeks preceding the seizure. There may have been specific triggers that pushed you over the seizures threshold. The #1 trigger is fatigue, but all sorts of things can play a role, some of them less obvious than others. It's also a good idea to track your medication, paying attention to how you feel and if your symptoms or side effects change in any way.

best,
Nakamova
 
Hi Jilian
Sorry to hear of your seizure and your H having found you. It must be hard for our loved ones to encounter - I know I wouldn't be strong enough initially. the 'abnormal brain activity' diagnosis must have been shocking and hard to hear. I know its no consolation but at least now you have a name to put to all that's been going on for you. I know what you mean about the tiredness. Hopefully its just your body adjusting to this new medication brand.
I'm having the same exhaustion at the minute so I understand. Its the sheer thought of doing sth which can be hard. For me, my body is working pretty much as before but my mind has been quite lazy since hospital! I had 5 seizures over 3 days around 10 days ago and 2 nights in hospital. My bf was woken in the night by the 1st, found me after the 2nd, saw the 3rd and 4th.
Im sure your children are all rooting for you and love you very much. You mustn't forget that. Its my bf, my parents and stepparents and friends who are helping me get through this hard time. Feel lucky you have people who love you and you are 1/2 way there.
Keep well.
 
You are all so kind, thanks so much for the words of support and encouragement. I'm currently going for a second opinion just to be sure. My new neuro has more experience and he isn't sold on the epilepsy diagnosis. So I'm having a stronger MRI, loads of bloodwork and another EEG.
 
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