Non epileptic seizures

[Makhaafa]

Hi all.

Had my first appointment yesterday.

I've collapsed 5 times in past week.

have resigned from work as had been on sick leave since September.

Anyone else here have non epileptic seizures ?

[cshubert]

I have had 2 absent seizures and have frequent daily jerking/twitching episodes. For me, these jerking episodes worsen exponentially when I take Tramadol and/or Neurontin (for my back/neck pain) and when I am overly fatigued.

I live with daily fatigue (thanks a lot CFS!), but if I go over and above my usual daily tasks, it triggers a flair of my FND symptoms. Example: This past weekend I went on a cruise with my husband. While it was relaxing being just the two of us, we did quite a lot of walking between the ship and the shore excursions. Because of this, my back and neck pain shot up, requiring more doses of tramadol. Between that and the physical exhaustion, I couldn't do much besides lay in the bed the last day. We got home on Monday and I'm just now starting to return to my "normal" fatigue after laying in the bed for 2 days.

It has been a daunting process for me trying to figure out some balance between what I NEED to do, what I WANT to do, and what I CAN do. I wish I could say that I've mastered that balance, but I haven't. The reality is that FND loves to throw you lots of curve balls and it's a learn as you go process.

That being said, I have been paying close attention to how my body feels leading up to an attack. I usually find that for a couple days prior, I start experiencing dizziness. As the dizziness increases, disorientation follows. And right before my absent seizures, I had about 2-3 minutes where my head was swimming and I felt like I was going to pass out. Now, I look for these symptoms and find a way to sit or rest to keep myself safe.

I've been ill for 8 years now, and I'm just now starting to accept the reality that I'm just not going to ever be the "old" me again. It's a difficult transition and events like this past weekend frustrate me endlessly and torment my soul! Depression is strongest during these times. Some days I think "I just can't go on. I don't have the strength to live like this the rest of my life." I am NOT suicudal mind you. I have a wonderful family who is doing their best to both understand and accomidate my physical limitations. But some days, the drain of living this way feels insurmountable.

Last night, my 12 year old son, who is autistic, came into our room in tears because he's struggling with depression. My husband said to him that when he feels bad, the best place he can go to feel better is into MY arms...Because my love and hugs make everything feel better. Sure enough, within minutes, my son calmed down. I wish I could hug myself and make myself feel better, but what I realized is that MY love is mirrored in the actions of my children. My autistic son, who struggles to understand and express emotions, then turned to me and gave me a big hug because he knew I was down too! These are the moments that allow me to push through the tough times...and to understand that even though my physical form may not function properly, my soul's work here is not yet finished!