Tag Archives: seizures

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 

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Advocating for BC Epilepsy Society

Hey bb’s!

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How are you doing this Wednesday afternoon? I saw my epilepsy specialist, as it was an appointment to see how my Vagus Nerve Stimulator was working. It was increased a bit, and I told him that I have been feeling insanely tired lately. Moreso than usual, I’ve been sleeping for a solid 12 hours on some days. I was impressed that he didn’t just brush it off as recovering from my seizures last Friday. Instead he said, “Keep an eye on that”.

WOW! I wish everyone had a health care team like that and support that they could go to. That’s why this month I am working to raise One thousand dollars for the BC Epilepsy Society. That way we can support more people with epilepsy, as we are all one. If you are interested in supporting my Go Fund Me, go to Go Fund Me and every dollar counts! I was inspired to do this by my friend who raised 1000 dollars for the BC Arthritis Society.  I thought hey, if she can do it, so can we!

Any questions, their website is BC Epilepsy Society , and if you have any questions for me, feel free to leave them below or shoot me an email at sita.gaia@gmail.com

Thank you for all the support! We got this!

Love.
Sita Gaia

The Most Pervasive Problems with Epilepsy and Mental Health

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Hey bb’s!

How was your weekend?? I hope you weren’t working all weekend! I got to spend some time with my Boo and we got her some “non work clothes” for the weekends. It was fun! She got some super cute work out clothes and some chill clothes for around the house. She works so damn hard, she totally deserves it! Also, I was nominated for two categories in the WEGO health awards!! Click here to nominate me!

I wanted to write about emotions regarding seizures. At first I thought, “Hey this will be a piece of cake!” I totally get what it’s like to have emotion shifts after seizures, but after doing some more extensive research, I realized I was in way over my head.

Sadness after seizures is more detailed than I thought of it to be. Through my research, it  brought up feelings that sometimes pop up throughout everyday life, and memories of feeling sad after a seizure. Regardless, I am going to break up the sections of  Emotions before a seizure, After a seizure, and Medication & Genes.

Before a Seizure
Some people with epilepsy can feel irritable, anxious, or depressed up to days or weeks before the actual seizure occurs. I know that for me, I definitely feel depressed before a seizure occurs. Although it is tricky; I need to always assess these feelings and see if it’s an episode of depression coming on, or just an aura.
In addition, your neurologist or epileptologist may have told you that stress, lack of sleep, memory problems, and low self esteem lead to a higher risk of seizures. All of these combined can contribute to poor mental health, which could trigger a seizure, or is especially felt after a seizure.

After a Seizure
Lack of memory of what happened during the seizure can trigger sad feelings. This past Friday, I had four black-out seizures which made me very sad and  overwhelmed.
Not knowing what happened can be very concerning.  Additionally, if you do not have a good support network, having seizures can be very difficult. I am lucky in that I have a strong support network of my Boo, my nuclear family, and friends. If a person doesn’t have that support network, it can make having seizures that much more difficult. This also ties into a work/life situation. Sometimes having a seizure can make you recall that you are not able to work, do not have good support systems, and are alone.

Medication and Genes
A side effect of your anti epileptic drugs may cause depression and or anxiety. I checked all of my medication and common side effects do not cause depression or anxiety for me. I take Clobozam, Tegretol, Mysoline, and Cypralex. I do experience lack of appetite from my medication. Although if you have genes of family members with depression or anxiety you are more likely to have depressive episodes and or anxiety.
My mum experiences depression (less so these days) so I believe that was genetically passed down to me. I am also very hard on myself, so that really doesn’t help. I don’t solely blame my genes for depression, as I do have other factors going on, such as being unable to work.

I definitely have low periods, and I am working harder to express my emotions and let myself cry when I need to. It is very hard because I have been told for a long time that I am very strong, which I interpreted as being able to handle anything. I also interpreted that as not showing too much emotion, which has been bad for my overall well being. I am lucky that I have people to talk to, and especially people whom I know love me unconditionally plus friends with chronic illnesses.

I need to find more support groups in my area, that deal solely with epilepsy. I know there is one in my area, but I just need some courage to go.

Love,
Sita Gaia xox

 

 

4 Reasons Why Self Care is Hard

Hey bb’s!
I am sure you have heard about self-care, (especially if you have a form of chronic illness), and have been told to practice self-care. In my Social Work degree, the idea of self-care was beaten into us. But what is it? It is the way of taking care of yourself when you need down time or are feeling symptoms due to your illness. (ie Seizures, exhaustion, flare up, hard to walk, etc.)
self care.jpg1.You Feel Selfish
Taking time for yourself to recharge or just tell your partner or friends that you cannot do much one day feels crappy. It feels weird sometimes to say “Hey I can’t come out and meet you because I had a really bad sleep and pushing myself would be too much.” I am lucky that my fiancee is super supportive and understands that some days I can’t do too much.

2.You Miss out On Social Events
Sometimes when you need some good self care time, also happens to clash with social events that you were looking forward to. This year I missed my own birthday party due to Psychogenic Non Epileptic Seizures. I was super bummed because the majority of people were actually attending! It was for the best though, and thankfully it wasn’t on my actual birthday.

3.Sometimes you don’t know *how* to self-care
Prior to getting many seizures, I wouldn’t be able to tell you what is in my self-care toolkit. (Stay tuned to find out what they are!) It can be difficult to figure out what the best self care options are best for you. For a person with a chronic illness, it can vary greatly, as everyone has different abilities. Going for a short walk might be good for me but not so good for a person with arthritis who is experiencing a flare up.

4. Your Self-Care can seem “lazy”
if You need to rest in your home without doing much, it can feel like you’re being “lazy”. As a person who never, ever wants to be called or labelled as lazy, this is a very hard one for me. When I legitimately need down time, I wish I could have done more around the house, and it makes me feel bad when I haven’t pulled my weight when my fiancee comes home. Although she understands, I am very hard on myself, which drives me crazy.

I’m having a self care day, so I have been thinking about this a lot. I’ll be posting about my own personal self-care toolkit soon so stay tuned!

Love,
Sita Gaia xox

Sita Gaia VS. Anxiety

Hey bb’s,

Stressed-out-anxious-woman-980x654I overbooked my schedule this week and now I am exhausted. That caused two seizures so now I am too anxious to leave the house. This is so shitty when it gets like that. I had plans to see my mum and get pedicures for an early mother’s day gift, see a friend who is going back to the UK forever on Saturday, and help my fiancee with groceries.

Let’s say one thing: sometimes I go into overdrive and feel I need to be as “productive” as a person without a chronic illness. That’s what fucks me over and I still haven’t learned the lesson, but sometimes I still feel the need to do try harder and harder.

Honestly, all I wanted to do was see Melissa McCarthy’s new movie tonight and chill. Yas I love her, as she is fucking hilarious.  I rewatch her really old show (that, let’s be really is problematic) Mike and Molly because it’s funny.

I hate the anxiety that comes with epilepsy. Yes there are tons of things that can combat it, such as meditation (and I meditate daily), but it’s a reality. I know that. It pisses me off. I hate staying at home all day as I at least like walking down three blocks to the Starbucks but it makes me anxious, and my fiancee anxious. Yeah, I know that dwelling on it doesn’t help, but I’m not happy with how my day is turning out.

Lots of love,

Sita Gaia

What I Want my Amazing Health Team to Know

SpoonsFirst off, I have an amazing health team to help treat my Refractory Epilepsy.     I have a top notch epileptologist, Vagus Nerve Specialist who comes in from out of town once a month, an epilepsy nurse who is fantastic, a neuropsychiatrist who I see every 6 months, and a psychologist who I see once a month. Plus I would like to add my family and friends. Whew! What an amazing  team!

Although my epileptic seizures are under pretty good control now (HALLELUJAH!) there are things I need my team to know.  Epilepsy is not just seizures.  Epilepsy now for me means counting my spoons ever so carefully. If you don’t know what the spoon theory is, check it out here: the spoon theory.

I always need to make sure that I don’t over-book my agenda. If I have appointments that week, I really can’t over socialize. I also need to  make sure I have time to help my fiancee around the house and grocery shop on the weekends.

So, health team, I need you to know that I struggle with anxiety and depression, despite the fact that my seizures are much better controlled. I need to opt out of things last minute if I am feeling exhausted. I am doing my absolute best, but sometimes that means combating the depression or anxiety that looms over my head on a regular basis.  Just because the seizures are gone, there are still things that I need to work with. Don’t pity me, I just need you to know.  I am a chronic illness warrior, so I keep fighting the good fight.

Thank you for doing all of the amazing work that you do! I couldn’t get through it without all of you!!

Love,
Sita Gaia

Sita Gaia VS. Exercise

Hey bb’s,

18268368_10154392609790776_7290771774937748565_nWoohoo it is almost summer! Finally done with the hybernating!
I have been feeling a bit down today but I had some errands around the house to do so I did them because I knew that would help. I have gone on and off being a couch potato as TV is one of the major things that calm my stress and anxiety. I remember coming home from high school in Grade 12 and Oprah was on and i felt my stress melt away as I stretched out on the couch.
In university I went to the gym 5 days a week and did Zumba on Monday nights and sometimes even Sunday mornings! I was a bit of a gym rat, and going to the gym relaxed my stress from school and relationship issues. At 21, it became difficult to go to the gym due to my uncontrolled seizures and decided that yoga would ultimately be my workout. I love yoga, but I missed that satisfaction of a sweaty workout.

Today I was looking at the photos that I put up, and one of them was of just me that my friend took in my other friend’s Jeep See above.. We were all headed to the beach and I looked so happy. “What happened to that Sita Gaia?!” I asked out loud. I quickly decided to actually use my fitness clothes that were sitting there, and I popped on my headphones and snapback. Let me tell you: running after a long time was hard and I am sure I was huffing and puffing but that’s okay! I came home and since it was SO hot out, I pointed the oscillating fan in front of me as I did more full body exercises. I feel more like myself now and my low mood has been replaced with serotonin. It’s fucking fantastic! Sure, I won’t be able to do this everyday, but this is literally a step in the right direction!!

Love,
Sita & Jojo