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Seizure Alert System

Mon, 08/07/2017 - 14:44
I was simple partial motor seizure free for 5 years, but the neuro is changing around my meds (because I was having bad side effects) and I had a simple partial motor seizure (for me it looks like a tonic-clonic, just right side of my body, and I'm conscious, thus feel excruciating pain). In the past they usually lasted approx. 1 min. This seizure lasted 4-6 minutes. My husband timed at 4 minutes after he got there, but I had already been having the seizure for awhile before he knew I was having a seizure. I'm able to say one words and I finally was able to reach my cell phone with my left hand and called him and said "come". He was in the house. My neuro is taking me off all of my Vimpat (already weaned off Keppra), and I will only be on Clonazepam and Lamicatal- the one drug I know works for me, before telling me I can start taking CBD. I had a seizure that lasted for 2 hours in 2012 before the ER could get me controlled, and it caused me cognative and motor damage that took a couple years to get back all of my skills. Now that I had the first one in 5 years that lasted past my "at 5 minutes call an Ambulance" level, I'm nervous. Even though my husband was in the house, when the seizure was continuing and I was trying to figure out how to get to my phone to call him, I had a little panic in me. What if the seizure continued and I couldn't get to my phone? What if I had a tonic-clonic because I'm being taken off meds and no one knew? Is there a system that I could alert my husband or others that I'm having an impairing seizure? I did a little research, but I thought I'd ask if anyone has used anything.

Comments

We have the exact same

Submitted by Epilepsy_Warrior on Sun, 2017-08-13 - 03:14
We have the exact same seizure type and symptoms so I feel your pain! :( I will be following this thread too because I would also like to know if there is something out there that could alert my boyfriend. God bless you <3

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