Went to sleep at 9:00 PM... Woke up at 10:45. So here I am, wide awake tonight, folks. My hair is a mess, my body is in pain and I couldn't sleep even if I was tired. My brain feels it is day time, so here I am. However, I will not be too negative about it as it is giving me some time to fill you all in on how I am doing as far as seizures, medications, and life in general. So here we go!!!
Seizures - Only had them this week that I had a cold. They were out of body for the most part, but it also did some sleep-walking ones. I have never sleep-walked in my life, and I had a nice bit tongue when I woke up. So yeah. But other than that they are well controlled for once.
Medication - Still praying that my Epileptologist will let me off of Onfi. It is a great drug, but definitely adds to my insomnia/over-sleeping issues that I need to find a way to control. I am wide awake at night, and then sleeping 12-14 hours a day. Onfi is a great drug, so don't take it wrong. My body simply can't handle it. Everyone is different.
I am being switched from Trileptol to a newer version of the Oxcarbazepine known as Aptiom. I believe I mentioned this drug before. If not, click here to learn more about it >>> http://www.Aptiom.com this drug is a perfected version of Oxcarbazepine, and is known to have less side effects. It was released just this last year. My doctor feels I may be more successful and may control seizures completely!
Other Health/Post Brain Surgery Issues - Due to surgery, my hormones have gone haywire. My Testosterone is higher then it should be and my female hormones are lower. I have hair growing places that I could never mention, and it grows so thick that I feel like a wolf. I had a Mirena inserted/implanted today (IUD) to attempt and help with periods. Periods for me come whenever they'd like to, but are never on time. And that is IF they feel like arriving at all. Two a month, one tiny one a week, cramps for two months and no-show... You name it and that's how TOM acts.
My reading is still difficult. Haven't started classes due to this. Not sure what to do with my life except being a writer, as I wish to do... I can read short text messages or e-mails. But if it is more than 3 lines, I have Siri do the work for me. The letters still switch things up and my blind spot gets in the way. Very difficult to deal with.
Especially since I tried to work at a restaurant. My brain forgets numbers easily along with names... Didn't go well. However, I got a job at H-E-B Grocery where I used to work as a CSA. So happy as they work wonderfully with the disabled. I am very blessed!!! So happy to start in two weeks!!!
Interest in artwork and blogging has returned. It seemed to go away during my first two months of Prozac. I felt so distanced from my true self that you just wouldn't imagine. But I am feeling more like myself lately and I am even working on some hospital baskets again. It took a lot to get that far, but I made it!!!
That's all the new things I can think of for now. Nothing crazier has happened. Pray I don't jinx myself!!! God bless and sweet dreams!!! I'm off to go work on some art.
Sitting in the room waiting to see my Dr. Szabo. Just spoke to my amazing Epilepsy Nurse, Janice. Always makes me laugh, somehow. Everything sounds good. I had no reported seizures to tell her about aside from 3 little auras over a 4 month period, which is fantastic compared to the 100 seizures and endless auras a day before brain surgery!
The only things that worry me are my Onfi. A fantastic medication that saves people who suffer from seizures in their sleep. Lessening chances of SUDEP (Sudden Unexplained Death in Epilepsy). This drug has caused tightening of my throat to the point where swallowing food is impossible without water... At least I think it's the pill's fault. We'll see.
I am also very worried about my ridiculous lack of sleep. It's throwing me off mentally and physically. Looks like I will have to sadly be put back on a higher dosage of Ambien for a while to avoid the seizures returning. After all, every aura so far has been due to lack of sleep. All occurred on days where I didn't sleep until 3-5:00 AM.
My panic attacks are lessening, which is good. I definitely do not recommend acne medications to anyone who has Epilepsy. They mess with hormones and in turn cause your body more stress than it needs. However, I am glad I took the pill, as it helped me understand why I have had cold hands and feet since brain surgery. Basically my body's way of fighting depression an anxiety. Mini panic attacks that did not win!!! (At least until I took the acne meds lol!)
Check out my awesome rash! No idea what it is from, though. Possibly the Cedar trees. But I've honestly never had this before. It just hit me yesterday and it looks awful!!! It could also be some sort of skin yeast infection. My mum recently had this issue... Contagious?!
Anyhow, I shall be off. I will write again after my follow up with my Psychologist, Dr. Velez, this next week. Her appointment will be interesting, as usual. God bless and I wish you all a seizure-FREE weekend!!!
Shortly after my first night of sleep deprivation I had my first seizure. The only problem is that it was in my sleeping hours, so we had to continue trying to force more seizures throughout the day. This was unsuccessful, so after the 2nd day, we decided to give it a break until the 3rd day. Little did we know, we wouldn't have to wait much longer!
I was lying awake in the hospital bed around 1:45am on the 25th of this past week, having been off my medication for 36 hours and waiting for my 2:00am - 8:00am sleep deprivation wake-up call. I thought I would try to get some shut eye since I had fifteen minutes left, and was all of the sudden extremely exhausted when only 5 minutes prior I had energy like the Energizer Bunny.
What happened next? You can probably guess, of course - I went into a tonic clonic seizure (also known as a grand mal to some people). I don't remember anything else about the situation, but it sure was a tonic clonic and it struck me down in the worst way imaginable. The most painful one I have had in about a year now... Makes me feel thankful for the tons of seizures that I have on a daily basis. This seizure was nothing compared.
I awoke to my two night nurses vacuuming spit, blood, and tiny chunks of my tongue out of my mouth. I bit the side of my tongue off again like I always do during a tonic clonic seizures. One held my hand and assured me I would be okay with what appeared to be tears in her eyes. I was so confused about what happened, because I didn't even remember how it started. I didn't even remember hitting the "seizure" button that we're supposed to hit before a seizure strikes or when we feel funny.
"Seizure Button"
I felt so childish as I cried for somewhere around two hours because of the frightening happening and the intensely painful headache that captured my entire skull, all the way down my neck. I begged to call my parents, in which I did. I cried when they answered and begged both my mother and my father to come to the hospital to be with me. They were unable to come be with me, as the hospital is all the way across town. But I truly hoped they'd make the trip to be with me.
I forgot about everyone that I knew. I forgot who my sisters Jessica and Eliana were. I forgot who my brother Jake was too. I had even forgotten who my handsome boyfriend was until an entire day later. The only ones I could remember were the father and mother who were with me from the start of my life. I only wish they had come to be with me.
With an injection of Lorazepam and another injection of pain killers for the terrible migraine I suffered, I felt in peace enough to be put to sleep. The doctors didn't bother try and keep me awake from 2:00 - 8:00am. At that point, there was no point! So I slept and slept, waiting only hours to do this all over again. Thankfully there was no going unconscious or biting of the tongue.
I was injected with a dye that would color the specific area of my brain in which is the cause of my seizures. The dye showed that my left temporal lobe is to blame, but my team of doctors (all of the sudden) have many more questions. They doubt that medication alone will ever be my cure, but they are not 100% set on surgery like they were once.
After I was injected with dye I was given a dose of Lorazepam and the rest of the evening was easy breezy. I got a brain scan so the doctors could see the parts of my brain colored by the dye, and my sweet boyfriend came to see me Thursday evening around 9:00pm and we laughed watching Star Wars in the hospital room.
I was embarrassed for him to see me covered in wires, glue, needles and as pale as a ghost... But Rafael has outdone himself as far as making me feel loved and comfortable. I enjoyed seeing him after all of the pain and terror of a trillion seizures.
Today, Friday the 27th, was less trying on the body. All that was required of me was a double dose of medication and sleep as the tech team monitored my discharge seizure activity until about 6pm. I had one more due scan without the presence of the tonic clonic seizure - so the doctors could see the difference in my brain on a normal day.
I didn't walk out with any reassuring words. I wasn't told that I would "for sure" be a candidate for brain surgery. This was a bummer - I won't lie to you. Nonetheless, the doctors "would like to believe that" I am and further testing will be done this month. I was upped another 1/3 of a dose of my Felbatol and I am FINALLY OFF OF MY KLONOPIN!!! It feels so good not to have to depend on that drug anymore.
I would like to share that the doctor isn't psyched about having me completely off of Klonopin as it was helping slightly with insomnia and anxiety - but I'm determined to go on without it. He insists that now I am without anything to control my insomnia I must avoid computer usage past about 11:00pm. So I will be having pre-scheduled blogs once agin.
I will have some of the regular "out of nowhere" blogs, but they will be less often and only for extremely important events or when I have extra time. So be sure to visit the upper left side of this blog site and enter my mailing list to be automatically updated. No junk mail, no spam, just ONE measly e-mail update when I make a new blog post!
Other than that, I still take 1,200 mg of Trileptal a day. Nothing has changed as far as that goes. But we are discussing changing me to entirely different dosages or even medications. (Felbatol isn't proven to be 100% safe for young fertile women at the moment - it's still up in the air!) I'm quite nervous about changing medications again. Especially since all the doctors agree that they highly doubt medication to be my cure.
This is all I have for now, but I'll keep y'all updated!!!
It's 3:04am.... Wait, wait, wait. This sounds familiar. These blogs are all starting to sound the same! Things are getting a little old around here with my insomnia, aren't they? Oh well, nothing I can do about it but press on. Right?
Today wasn't the best day. I woke up for work at 6:00am, took a shower (Oh God, why would I shower?! That's only the one place I have most of my seizures!) and ended up having a seizure, falling down and hitting my head against the tile. Nothing new, as this has become an almost everyday thing for me for the past few years. Well, minus the hitting my head on the tile part. That has only happened a select few times. At least there was no blood this morning.
I had to call into work. My manager didn't sound at all convinced that I was serious about having a seizure. People never seem to be convinced anymore... Even my family. It's like all I hear is "Don't tell me that crap." or "It's just an excuse." I cannot stand it. Do I need to fall naked in front of them again, convulsing and bleeding from the mouth for them to see that this is still very real? As a matter of fact, didn't that very thing I just mentioned happen only a month and a half ago?
I met with Dr. Szabo yesterday and we lowered the levels of my Vagus Nerve Stimulator implant by two notches. We're not sure if my brain was more comfortable with the level it was at a while back or not. My seizures have begun to go crazy as of a month or two ago, and that's when we took the stimulation up two notches. So my doctor is basically trying to take me back to where I was and see if I'll be okay again. Back when I thought that I would finally be able to get off of my medication. But judging from the incident this morning, I'm not sure if that's going to happen.
We talked about getting my temporal lobe or even both my left temporal and occipital lobe removed. So surgery is back on the table and no one is stopping me from getting it. I've about had it with medication, and I'm starting to completely regret having the VNS implanted. I believe that my only purpose for receiving that implant was to simply be able to share my experiences with you all. I don't think it was the right treatment for me.
I've tried almost every medication out there except for Sabril. It sounded promising to take at first, but the fact that my peripheral vision is already slowly going away, and vision loss runs in the family, I wont be giving Sabril a chance. It's far too expensive and the 25% chance of vision loss is not something I am fond of risking.
I've scheduled an EEG with video monitoring in about three weeks here. To sum that up, I'll basically be recording the electrical activity that occurs along the scalp of my head from my brain. I'll be taken off all of my medication, and I will be FORCED to play video games, play with my cell phone, work on the computer, and stare at flashing lights until about three seizures occur. This way, doctors can pin-point the area where most of my seizure activity comes from.
It sounds violent, and I wont lie - it might as well be a crime to do this to people. Unfortunately, it's the only way to help a person with Epilepsy. But don't worry, I will be blogging as much as I can during my hospital stay and I'm sure my mother will be right next to me with a camera taking embarrassing pictures of me after my seizure like she always does. I still don't know why she finds that okay to do, but maybe if they aren't too bad, I'll share one with you all.
After the EEG I will most likely have to repeat my Wada test or ISAP test, named after Canadian neurologist and epileptologist Juhn Atsushi Wada. It is an "intracarotidsodiumamobarbital procedure" used to establish cerebral language and memory of each hemisphere in the brain. It's quite fun actually... aside from all the pain in which I am practically immune to now. They make an incision in my groin and insert a pretty thick catheter into my artery and release a barbiturate into my brain, one hemisphere at a time.
No pain killers can be given, since they affect the way your brain works, so pain is something that you have to deal with. A local can be given, but it only helps that first layer of skin from feeling any pain. It does not get rid of the pain that comes along with pushing the catheter up through your body until it reaches your neck. They claim you should feel no pain, but I was on the verge of tears during my last Wada test. So it's all a lie!
The fun part is after the barbiturate has been released. Your eyes feel like they are being pressed on for a few seconds, and then the doctors try to see if you can read, recognize objects, talk, etc. After the drug has worn off, they see how much you can recall. It's a lengthy process and quite painful, but it's amazing to go through it all and get to experience these crazy things.
I remember the entire time I went through my Wada test I got to stare up at about 20 screens above me, all showing different angles and views of my brain. It was practically a live MRI/X-Ray. Totally awesome to see. I'm hoping to get a recording this time so I can share it with all of you. It's really up to the doctors though. Hopefully, if I do get a recording, no one cracks a joke about losing their wedding ring in my groin. That was totally not funny!
I know this blog sounds very negative, but these things aren't exactly pleasant to talk about. I assure you, though, I have a positive attitude about all of this. I'm hoping to still be a surgery candidate and get these pieces of my brain taken out as fast as possible. I want to be seizure free so I can further continue my advocacy without these pauses that many of you notice. I no longer want to say "Sorry folks, my blog posts will be delayed for a week or two due to some seizure activity".
Until then, I'll make due. Please stay tuned for more Epilepsy, A Love Story pieces and be sure to check out the following pages... and my CONTEST which will be running for the next week. The prize isn't HUGE - only a $15 Amazon.com gift card and two FREE RedBox movies. But it's just a kick-off contest for some of the bigger ones that I have coming soon! This contest requires no purchase or any of that wacky "apply for a credit card" crap. It's a simple sign up, and all it takes is some quick participation and you're entered! Even better, you can enter each day!
To enter the contest, please see my CONTESTS page!
I've got work at 9:00am tomorrow... But I can't sleep, which isn't unusual. Insomnia is common with Epilepsy, and extremely common with a girl named Mandy Krzywonski. I figured I would write a quick blog to just let everyone in on how my health is right now. I get a lot of e-mails and tweets from you all, wondering how I'm doing, and it's hard to tell you all so quickly in a 160 character tweet or an e-mail from my cell phone. So what better way to do it than on Blogger?
