It's been a really long time since I have been on here. I popped back on briefly a few years ago, but wasn't able to be very active here as I was dealing with a lot of health problems in addition to my epilepsy. I think it was around 2009 when I was last on. Before that, I had been pretty active on here 2002-2005ish I can't remember for sure. Anyway, I hope everyone both new and old members have been doing well.
I'm experiencing new seizure symptoms, and now have learned to recognize my auras. I'm calling my neurologist soon, just not sure if I should wait until after I have my ankle surgery this coming Friday or not. I'm worried about side effects and possible med changes interfering with the surgery and I can't put the ankle surgery off.
Anyway, back to my seizures. They're happening more frequently and worse than I've had in years. Plus the new symptoms.
Over the years, I've been diagnosed with Absence, Complex Partial and Simple Partial seizures. Until this last year, I never experienced an aura that I knew of. Now, when it happens I get sudden nausea, (sometimes even throw up a little) light headed, dizzy and heavy headed feeling. It's very weird sensations. Then I've been having more cluster seizures than ever before. Afterward, I am so exhausted that I can't keep my eyes open, not just tired and sleepy, like it's a battle to even keep my eyes open. So I go lay down and sleep it off. I've also in the last 6 months begun to have times where I have a hard time with breathing-like a yawn that is unfinished/can't catch my breath type of thing, over and over and over. (sometimes just when sitting on the couch, not activity needed to bring that on) My heart rate will jump into the 130s-150s and fluctuates. Sometimes all of these things happen together followed by seizures, sometimes only 1 or 2 of these things will happen followed by seizures. I've never been able to tell when I was having a seizure, because I never had any side effects only the being tired after.
Another thing is I woke up 2 days ago with major neck and shoulder pain that I still feel, only it isn't as bad as it was. My best friend here asked me if maybe I'm tensing my body up during a seizure in my sleep. Of course I don't know but maybe it is possible. I have no idea.
I don't have convulsions. But do sometimes get like a restless leg kind of thing.
I've fallen and sprained my ankle 3 times within the last year and a half. Hubby thinks I may have had one of my seizures while walking and not being cognitive that second(s) when stepping down mid step that it's causing me to fall. Again, I don't know. Sometimes there is 1 quick seizure or a few or clusters of them. Now this last fall has injured my ankle so badly I have to have surgery to get ligament repair, scar tissue removed, he's going to check my tendon while he's in there. Anyway that's off topic. Sorry.
Now all of this is happening and it's like a freight train has hit my life and I keep remembering when I was diagnosed in 2001 and all of the meds we tried that didn't work and the side effects of those meds were hell and I just can't go through that again. I missed a lot of my son's toddler years due to seizure med side effects causing me to sleep so much. He's 16 now and I don't want to miss anything again. I don't want to go through this, or have my husband and son going through this again. My mother in law came out from Arizona to stay with us for a while because I am having ankle surgery next Friday. It will help having her here for this seizure mess too.
But I'm just so upset, and needed to vent it out. Has anyone else experienced these types of things with your seizures?
(Or Stacy to friends who may not recognize stamikaus from years ago)