Living with a Vagus Nerve Stimulator: Is it Worth it?

Hey BB’s

Living wih VNS Canva     This is almost the one year anniversary of getting my Vagus Nerve Stimulator implanted. A Vagus Nerve Stimulator (VNS) is like a pace maker, except for the brain. A little device is implanted right below the collarbone, on the left  and a wire is attached via the vagus nerve. (Which is on the left side of the neck). It is set to send little pulses at a rate that is determined by your epileptologist/neurologist. It can help to stop  a seizure, or make it less aggressive by swiping a magnet that you wear like a watch on your right wrist. I’m still waiting for someone to ask me the time as I look super rich by having an iWatch. Regardless, the pulses feel very powerful!

Is it worth it? For me, it was 100% worth it. I was at a point where my seizures were so frequent that my epilepeptologist bumped me up to Urgent, in terms of receiving it. There are only TWO doctors in the province that I live in that do it, so there was a bit of a wait, but it was worth it. My seizures have decreased a lot, and I can actually feel an aura now! I am travelling right now- and when there was a huge drop in pressure I was able to wave my magnet over the VNS device to help prevent from seizures.

The one thing that bothers me about the Vagus Nerve Stimulator is that sometimes the pulses run through my voice box, making it sound a little strangled. (This is clear proof from my Epilepsy Nurse who said she could hear a difference in my voice. I know tonnes of people think their voices sound different with no change, but there has been, my friends). It may not affect you, as you may not need the pulses turned up so high, It totally depends on case by case, and no one is a cookie cutter.

If a VNS is your best option, I would go with it! You never know how much it could change your life for the better. I know it has for me! My Fiancee has been able to stop seizures while I am having them, and I can prevent them if I feel an aura.

Lots of love,
Sita Gaia xx

PS- if you aren’t already doing so- follow me on me on Instagram @ joeyjo422 

Advertisements

What Makes it Hard to Be a Kick Ass Spouse

Hey bb’s!

How’s the official start of your summer going?

I have been pretty busy with my Beyoncé Fiancée. Yesterday we were going to go downtown and do some shopping, but at the last minute we changed our minds and checked out some malls we have never been to!

I assume many of you are casually dating, married or in relationships. Since I am getting married next year, I wanted to share with you the challenges of being a good spouse while having a chronic illness.

1. Missing Out on Things Due to Not Feeling Well

I always feel so bad when I can’t go out due to seizures, crazy fatigue, or mental health issues. My partner is very understanding, and understands when we have to skip events.

2. Not Being Able To Keep Our Home Clean

Okay, I make it sound like our home is a disaster area (which it’s not!) If I can’t make a meal, do the dishes or vacuum, I’m very hard on myself. My Beyoncé fiancée doesn’t care very much, but I want things to be perfect.

3.Going to Bed Early

I usually go to bed at 8pm, straight up y’all, ( I’m trying this thing as a Canadian and trying to see if y’all works) and I meditate for 20 minutes after I get in bed. I’m pretty boring when it comes to night time. *cough* *cough*

4. Low Energy Levels

Even though I take butt load of anti epileptic drugs, I’m also anemic so when my iron is really low I can sleep and sleep. Not kidding, I slept through the yoga class I wanted to go to on Friday! I also have to count my spoons super carefully, so I can’t “over do it” with regards to socializing, exercising, etc.

5. Straight Up having Seizures

If you have seizures, you know they’re the pits. I also have psychogenic non epileptic seizures, so that can be a lot of stress on my Beyoncé Fiancée.

I know she still loves me, regardless of all these things, so to make sure both people are happy, we have an open communication about all of these issues. Honestly, talking about things is the best thing you can do.

Love,

Sita Gaia xox