Seizures & Epilepsy

This Getting Ridiculous: I’ve had ENOUGH

June 21, 2017
I’ve been having one seizure a week since January. It’s getting so depressing. I don’t have nocturnal grand mal seizures anymore, those stopped in November (don’t jinx me). These partial seizures are on fire and are so weird. I feel it coming like “The Weeknd” says. And when they come, I have aurora/hallucinations, my lips start smacking on the left side of my face, and I drool… A LOT.
I don’t know what to do anymore. The doctor is testing Lamicdol 200mg extended release twice a day, Keppra 500mg at night and Vimpat 250 twice a day. I feel like my Grandma who has to take all these pills in the AM/PM in those large pill cases. My poor boyfriend who has to remind me to take my medications so he doesn’t have to witness a seizure. He is the best thing in my life, hopefully I don’t scare him away with all this Sh*T happening to me. Epilepsy sucks. People get so uncomfortable with Epileptics. Saying “I’m Epileptic” is hard. When I started this blog, I wanted to raise awareness so people know about this disorder. I also want to connect with other adults that have seizures. Since this has gotten bad, I’m ready to pour my heart out to everyone.
My body is rejecting these pills. If this continues in the next month, my doctor wants to put me in the hospital and monitor my brain for 5 days and cut out my medication to fully diagnose me (if there is data). I don’t know what’s going to happen. But to hear Brain Surgery freaks me out, but hey if it stops my seizures, I’ll consider it.
Here is my next course of actions to really fight this:
  • The Whole 30/Grain Brain concepts: taking both of these rules to cut out sugar, gluten and carbs
  • Meditation: I’ve tried this but I need to give this a second chance. How can I shut down this brain of mine? Taking Klonipins and Xanax is the only way to relax me.
  • Stop stressing: I have no idea why I stress and overanalyze EVERYTHING. Anxiety is a mother effing bitch and runs in my family. This is my #1 trigger.
With these 3, I hope my next update will be “Seizure free for more than 1 week”.
Please pass my blog to any one you know that has seizures so I can open up the comment forum. I would love to hear anyone’s experiences with epilepsy or you have questions and don’t have epilepsy, feel free to post!
Seizures & Epilepsy

Medication – Trial and Errors

May 23, 2017
Seizure Medication

When is comes to medication, all my neurologists and I repeat the same conversation. Some may have different methods, but this example is the typical talk track.

ME: I had a breakthrough seizure in April.

DOC: We will start you on Keppra XR at 500mg at bedtime, as we think this is an effective anti-convulsant with the least amount of side-effects.

ME: I had another nocturnal seizure in August.

DOC: Ok, lets increase your dosage from 500mg to 1000mg in Keppra XR.

ME: I had another seizure.

DOC: Ok, we will increase your dosage from 1000mg to 1500mg of Keppra XR.

ME: I had another seizure and I feel like they get triggered a lot by stress and anxiety. My anxiety has definitely increased more than usual, especially when I started taking Keppra and I know that’s a popular side effect.

DOC: I don’t want to add an anxiety medication to combat the Keppra side effect. So lets slowly decrease your Keppra XR dosage and introduce you to Vimpat at 50mg. These 2 combinations work well together.

ME: I had ANOTHER SEIZURE.

DOC: Ok, increase Vimpat dosage to 100mg, but decrease Keppra XR to 1000mg.

ME: OMFG, I had ANOTHER F****** SEIZURE _ WHAT IS GOING ON

DOC: Increase Vimpat dosage to 200mg, Keppra XR still at 1000mg. (my doc and I  are stumped on why Keppra XR doesn’t work for me, but I am beginning to realize that this disorder is about maintaining medication. It doesn’t sound right to me)

I’ve been on Vimpat (200mg) and Keppra(1000mg) for a couple months and they do work well together for me. I still have really bad anxiety, but I am trying fix that issue the natural way.

The one night I did have a nocturnal seizure was when I had to wait 2 days for the insurance to approve. I had to miss a night’s dose of Vimpat and take the Keppra by itself and guess what, I had a nocturnal seizure because of the missing medication. Thanks Insurance!

Meanwhile, now I am experiencing “awake” partial seizures and that is a HUGE change up in my diagnosis. This happened on Christmas day. That REALLY sucked. So obviously since now I have these new types of seizures….just literally the same repeated conversion I showed you earlier in this post. Something like this….

ME: So Doc, instead of these nocturnal seizures, I experienced seizures/convulsions when I’m awake!

DOC: Lets increase the Vimpat to 250mg, but keep the Keppra the same because we are going to introduce a new medication for you – Lacmictal and wing you off the Keppra

And the trial and error of Meds continue!

 

Seizures & Epilepsy

48 Hour EEG Test – Those are FUN

November 14, 2016

What is an EEG Test? 

So Brain Cells are known to “communicate” with each other through electrical impulses. An electroencephalogram (EEG) is a test used to evaluate the electrical activity in the brain. So I guess, an EEG can help detect potential problems associated with this activity. This definition makes sense to me, but I’ve been trying to figure out why and what is causing my brain cells to misfire all over the place?

WHEN: October 2015 –  48 HOURS STRAIGHT

WHY: Doctor’s Orders 

I let my doctor order a 48 hour EEG test to see if there were any abnormal activities going on, specifically when I am sleeping.

MY EXPERIENCE

Since my seizures were happening more frequently every month. I was experiencing one nocturnal seizure monthly since July. I have taken an EEG before, but this time, my doctor requested a 48 hour EEG.

Getting wires glued to my head was brutal. I am getting frustrated each time when they are not finding any cause to this. I was hoping the 48 hours of data will give them something to find. My dad took me to the technician to get the wires glued on. The look on his face watching me was sad to see. These tests have not only been frustrating, but my whole family too. We have no control of these. It’s a weird feeling when I kind of want them to find SOMETHING, ANYTHING so it can lead us somewhere – anywhere!
I was still on medication during the test, as I could not stop them when they were testing. I had to stay home and stay comfortable. I couldn’t really move around because I did not want the wires to wiggle around. I mean 2 full nights of me sleeping. It was so uncomfortable, my head was pounding and itchy.
I was hopeful they would find some irregular activity in my brain, especially during 2 sleep cycles that they recorded. I had to wait a couple months until I saw my doctor for the results.

RESULTS: NONE that were significant 

I was hoping this $900 test would give me some kind of answer, but it didn’t. Not. One. Clue.

I keep telling myself – no more tests – why do tests and pay for the tests if they can’t find anything.  The question I keep coming to – is it a good thing that they don’t find something? That everything in my brain looks normal for the most part. I don’t know.

 

Seizures & Epilepsy

And They Keep On Coming!

May 1, 2016
seizure puzzles

So it’s been about 5 months since my last post. I have been lagging but I’ve been super busy with more of these nocturnal seizures! I’ve had about 4 more nocturnal seizures since October 2015.  Total lifetime seizures in these last 2 years is 9. I wish I could go back to the time when I was seizure free for 9 months, that was great. I will try and fill you in as much as I can on this Seizure Plague that hit September 2015.

October. . .September. . . November. . . January.  . . February 

In my last post, I mentioned the seizure I had by myself before a 4am flight. Now after that episode, I was up to 2,000 Keppra XR only taken at bedtime. Then another episode hit in November, (that was before another early morning flight – coincidence? After that one, my Doctor wanted to check in and discuss medication options.

I like to solve things, puzzles, games – they’ve been my favorite. Yet, I am still trying to figure my “brain game” out. I should mention that I quit the Birth Control Pill in August (2015). I’ve been on it for 8 years, it never caused huge side effects – just the normal ” hormonal crazy”.  I was pretty regular. The reason why I got of it was…. NO – I wasn’t trying to get pregnant. Nope. Nope. Not there yet. I got off of it because I was trying to eliminate reasons why I developed epilepsy all of a sudden – back to my puzzle solving. So my boyfriend and I  decided to test it and get off it and maybe that would reduce the seizures. But since I got off of the birth control pills, they have been getting worse and happening more frequently.

Whats Up Vimpat? 

The only medication I’ve been trying was the Keppra XR so the Doc introduced me to a starter pack of Vimpat. From November 2015 – January 2016, my seizures were under control, I was about 2 months free. Everything was going fine with the Keppra XR, I didn’t want to try Vimpat just yet. So in late January, another episode hit, not sure what the triggers were, I decided to try the Vimpat starter pack. Well it was fine, no side effects, so I continued to try it and stay on it. My insurance denied more Vimpat medication (no idea they can do that and this story will be fully disclosed in the next post). While my doctors and my insurance were going back and forth at it, I had another episode in February (on the Keppra XR). So finally the insurance cleared it and I got the Vimpat prescription approved. From February to April 2016, I’ve been on the Vimpat (2x a day) and Keppra XR (1,000mg at night). I don’t feel any different, all I want is to be seizure free for at least 6 months. Is that too much to ask?

 

Seizures & Epilepsy

More Seizures

November 4, 2015
life quote

3rd, 4th, 5th & 6th Seizures Experiences – July – October 2015 

9 months seizure free and i’m feeling good. I’m still required to take my meds everyday – the 1000mg of Keppra XR. I didn’t change my diet drastically but made some healthy changes. I also didn’t drink as much – I was doing 2 – 3 glasses of wine max. I did not want to accept I was epileptic. We all thought this was a phase until another nocturnal seizure happened – again on a Sunday. Continue Reading…

Seizures & Epilepsy

Second Seizure

November 3, 2015

So after my first neurologist appointment, I was under the impression that since it was technically 1 cluster of seizures, and that there was not enough data, that I don’t have epilepsy. But since my license was suspended and they were unsure if I would have another (maybe during the day) the doctor required me to start on anti-convulsion medication called Keppra.

Continue Reading…

Seizures & Epilepsy

My First Seizure

October 30, 2015
1st seizure

I am starting this blog in hopes to raise awareness about seizures and epilepsy. I want to share with you my struggles and challenges with seizures and epilepsy. Here is my story of my first seizure in August 2014.

Continue Reading…