Step by step

Ever been in a situation where it was a bad situation overall but if it was going to be bad you’re glad it played out like it did? Like you got really sick when you had planned on using your vacation time at work for a staycation. Yes it sucks you’re spending your off time sick at home but hey at least you’re getting paid for it and at least they already planned for you to be off. Thats how this past weekend was for me. Seizures are the worst and will continue to be miserable however VNS gave me a glimpse of how it can help with some of the side effects of seizures. Friday Night busy night at work not overly stressful but it had been an overall bad day for me. I had a seizure but was coherent well before the EMS got to the hotel they were impressed. Though I don’t remember all that was talked about I know I talked about my VNS and was asked about who the president was and I want to say I said “It’s not Obama anymore…” but I can’t remember if I actually said Trump even though he was inaugurated months ago. After I went home I had no trouble going to sleep which was unusual for me normally my mind races and I can’t get it to quiet down. The next day I woke up surprised to find I didn’t have a headache, I didn’t have muscle soreness I felt normal. I called work and they were also surprised to hear i was coming in because normally they tell me to take a day and sleep it off. Everyone at work said I acted normal not sluggish or anything that next day. So while we are still trying to figure out what the correct level to put my VNS at I’m just happy that I have a course of action I can take in the form of the magnet instead of being a time bomb that may or may not go off. That it lessens the effects of the seizures and shortens recovery time. The magnet isn’t complicated to use and fits in my pocket. It is helping. It just is taking time for my body to adjust and one day i’ll get there.

Published in: on May 8, 2017 at 5:59 pm  Leave a Comment  
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VNS update 2.0

I’ve been asked to give my two cents on my vns experience thus far. I love it. It gives me peace of mind that I haven’t had before even with medication there was always that underlying fear that you would get used to the current dose and it wouldn’t be effective but you wouldn’t know that until you had a “breakthrough seizure” or unless you had regular testing and who wants to have brain tests done several times a year not to mention EXPENSIVE! VNS therapy is a stimulation therapy known also as “the pacemaker for your brain” it’s also used for people struggling with depression.  The electrical current runs up my Vagus Nerve every 5 min it gives me a 30 second current of energy. The strength of the current is slowly being increased as you would slowly introduce a new medication into your system. The first level I didn’t know what to expect but I got used to it fairly quickly. I will say I’m glad my job doesn’t depend on me talking on the phone all day, making speeches or singing because when this thing goes off I sound robotic. There is a way to “pause” it but it comes with it’s own negative results so I don’t like to do it especially when I first get it turned up. Being I’m only the second person in asheville to have this particular model which reads my heart rate my neurologist is fascinated as am I by the data my device provided at my recent appointment. We think that it might be too sensitive because it’s firing alot and maybe more than it should. When it does it’s a stronger signal and it typically fires when I climb up a big hill and I feel like i’m being smothered and it’s really hard to breathe. It’s a weird feeling since i’ve been blessed to not have asthma or breathing problems it kinda freaks me out. But so far so good and I’m looking forward and hoping for the day where people only know I have epilepsy because I have told them about my VNS not because they have experienced my seizures first hand. Thanks for all your thoughts and prayers. If you have any questions feel free to ask away I love talking about it since it fascinates me 🙂

Published in: on May 2, 2017 at 3:32 am  Comments (1)  
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