My ultimate question today is: Is my increase in issues due to new meds or just FND changing yet again for the millionth time? I am so frustrated with this whole FND crap, it isn't funny any more! Jokes over I want my life back! AAAAHHH! . Sorry, I know you all understand my frustrations, as you all go through your own Hell with this.
In the last month since I found out I was having non and epileptic seizures along with all the movements, my Neuro put me on Keppra. Unfortunately, it is hard to tell if it is helping with the seizures, when I don't know which ones are epileptic and which ones are not. On the other end of the medication, are the warnings of possible side effects. The meds have not only kicked my butt tired wise in the afternoon, but has made me more irritable, depressed, trouble sleeping here and there at night, weakness (so much harder to move after seizing, walking, moving etc.. and those are the ones listed in the warnings. The ones not listed in the warnings are: More movements in my arms (more shaking), worse walking (curling of feet/toes and legs more, more seizure activity, and vocally I struggle any ways, but Oh my crap.. my talking has been really messed up in the last month. I struggle with my voice going hoarse and articulation of words, or getting words out due to spasms in the neck and jaw, but this is getting ridiculous. I still bounce between the two, but my words are more slurred, I struggle even more to talk most days now, and mentally trying to think of how or what to say, and to try and get those words out sucks, and is going to drive me mad! I either have to keep a pad of paper with me to write things down, or never say anything, because the shaking in my hand makes writing hard sometimes. And lately, mentally, I feel like I am losing it, and I don't even want to say this, but some days I just wish it could be over. I'm just not sure how much more I can take some days. But then another day comes, and I might be able to do more, and some days I can't. I hate living from min. to min. never knowing what is going to happen.
Even this has taken me so long to write because I am struggling to formulate my thoughts. AAAAHHHHHH! This whole thing is just mentally and physically draining isn't it?
Oh, and the newest symptoms to join the family of my FND crap started last Sunday. So I have struggled for months with on and off facial spasms, and have always had the little spasms here and there by the eyes when I am tired.. no biggie. But rapid blinking has started, recently, and now with the rapid blinking are spasms in my eyeballs themselves. Last Sunday while waking up with seizing, I was laying in my bed trying to wake up, when my eyes started to blink, and my eyes started flipping from side to side, and back in my head. Very annoying when you can't focus on anything around you because you look to the left, then the right, then way up, then left and right again.. and on and on for about an hour. And along with the eyes and the face, are the tongue jutting out, or clicking like I am a noisy eater, but not eating anything.
And my seizing is getting creative in places to start.. They aren't just in bed, but standing up, sitting at the kitchen table, at my kids school, church, in the temple, in the car and my personal new favorites not to embarrass myself, but they make the top two.. are on the toilet, and today while taking a bath. My poor family. I feel so bad when I screw everything up, with all this crap.
I told my Neuro what is going on with these new meds, and she said for the next two weeks to slowly start getting off of them, so we can try something new. Thank goodness.
So again, my question is.. since I started taking these new meds, my life has been turned upside down even more, (sorry to complain, but I know you all understand) but is this due to the meds or just more changes to the FND? I pray that it is the meds, and things will calm down a bit once I stop them, but what if they don't? What if the shaking, the walking, talking, thinking and moving issues continue to get worse? I am just so done!
I am so sorry for those of you who are so much worse off than me. I feel some of your pain, and pray that I won't continue to get worse on both ends.
Thanks for listening to me whine about this crap. I just had to get it off my chest somehow, and how better to those who understand my fight. May they find something soon to help us all I pray. We don't deserve this.
On the positive side, even though it was a huge struggle, yesterday my middle daughter graduated from High School. So proud of her. She is so awesome, and I am so proud of her. She is such an amazing young woman and I am proud to be her mom.
best of luck to you all.