Seizures Appeared One Year Ago

It was one year ago today that I had my first seizure. I remember things like it was yesterday. I didn't sleep well at all that night but rather I tossed and turned most of the night. My mind kept racing but nothing that I felt was all that abnormal. I got up as I normally did and got ready for work and hurried my son along since he was going to his great grandma's that day. I felt a little sick to my stomach and unexpectedly tired that morning but didn't think anything of it.

I noticed shortly after I reached my exit to the Interstate that I really did not feel right. I remember one instance where I felt like I blanked out for a second and I found myself in the third lane without remembering how I got there. No one was around and I assumed I was just tired and trailed off so I continued on, a bit more cautious.

It was several miles down the road, closer to Springfield than to home when I remember looking ahead and seeing a semi in front of me and making the conscious decision to get into the left lane to pass him. For some reason this was funny to me and I felt my mouth twitch into a smile. A second later I was staring at the roof of my car and I had no idea why. I could hear my son tapping me on the shoulder and calling "mom, mom" but I couldn't respond to him. I felt myself mentally fighting to get my head back facing the front when I heard the wheel hit something briefly. By the time I finally had both hand back on the wheel and my eyes looking ahead again, my son had us back on the road. I could tell he was scared and while I still wasn't 100% sure what had happened, I was pretty sure it was a seizure based on what I had heard about them.

Not daring to pull over on the interstate, I told my son to call his dad but to keep a close eye on me and grab the wheel if I started acting funny. He handed me the cell phone and I told John I was going to take the next exit but he better come get me. I actually missed that exit because it was one I was not familiar with and by the time I got close to it, it was by me. I was able to get us safely to the parking lot of a car dealer and parked. John was on his way and my son was with me.

I called grandma to tell her that he wouldn't be there and then called my mom because I knew she would probably call her to ask what was wrong with me. I remember telling her I think I had a seizure and I think I managed to tell her where I was before I again had the feeling something was funny and the smile came across me. I was standing outside the car and while I could feel my leg a bit unsteady and could hear her on the phone, I was unable to respond. Eventually my son got the phone and my seizure ended.

My mom and dad arrived and my mom called my doctor. While she was on the phone with the nurse, I had another seizure. I remember her making the comment to find something for me to bite on and I kept trying to shake my head no but couldn't. The nurse told her not to do that and to get me to the ER.

Shortly after this, John made it from work to me and he drove me to the hospital. I had another seizure in the car with him. I remember him gripping my hand when I had it. I was quickly admitted at the ER and they put an IV into me. John and I told what happened several times. While the doctor was in to check on me, I had what would be my last complex partial seizure. He had asked me a question and I went to answer him. I again got the feeling something was funny and the seizure began. I think this was one of the longest I had. He held my left hand and called my name several times. John held my right hand and talked to me. When it ended, they gave me a shot of Attivan, a fast acting medicine that will halt seizures.

I was extremely tired after getting this and curled up dozing while John sorted things out to get me dismissed. I would be starting on Keppra and the neurologist wanted me to have an EEG. John drove me to the office to get my EEG. Unlike the first EEG I had, I found it hard to stay awake for the test rather than finding it hard to sleep. After it was finished, we headed home.

Over the next two days, I would have several simple partial seizures that were simply a feeling of euphoria and twitching of my mouth. During these, I could communicate although not talk and could hear everything that went on. I never lost consciousness, my balance, or even my place in the conversation when it was over. Luckily, as quickly as they began they ended and I started my six months of not being allowed to drive.

I'm sure there are things that I have missed in my recount of what happened but I do know this... it is an experience I hope I never have to experience again. Seeing the one year mark come with no further seizures makes me very happy. :)

He was Listening to Me... :)

Well, I guess the frustrations that I expressed earlier went straight to God's ears! I have heard from the DMV and effective immediately, I am approved to drive again!!!

It feels like a HUGE weight has been lifted from me! I can't wait to get back behind the wheel. :D

This means that I WILL be at the Relay meeting on Monday and whomever is parking in my place at work... I'm back!!!

Thank you to everyone for your prayers and support through this long six months. I love you all!!!

I Should be Driving Again...

The key word in that subject appears to be SHOULD. Today it has been six months since I had my last seizure and legally that means I should be able to legally drive again. However, it took a month for me to get paperwork filled out at my Neurologist's office and I suspect the DMV didn't get the paperwork until maybe Tuesday or Wednesday of this week. Therefore, if I do get notification today that I can drive again... I would be seriously shocked. Truth is, with the holidays and everyone at the State taking last minute vacations and the like, I will probably not get official word until mid-January. :(

I've attempted calling them to ask if I can drive until they give the final approval... no luck there. I've attempted emailing them to ask... again no reply. I guess I'm just doomed to waiting until I get the paperwork back from them giving me permission to drive again. I guess they just truly don't understand what kind of a hardship it puts on someone, that is already going through a lot, when they can not drive. It adds at least three times as much stress on me because nothing is easy. It's not like I purposely had a seizure to lose my license. It's not like I did something illegal. *Sigh* I guess this is just another lesson in patience.

I've been looking forward to today for the past three months and now it's not happening as I envisioned. It's a bit depressing. As if it hasn't been hard enough to fight that for the last two years now it's getting even harder.

God, grant me the patience to get through this stage and the strength to come out stronger for it. - Amen

An Update from Relay Weekend

Wow, this weekend has been wild, crazy, and a lot of fun!

I'll post a full fledged monthly update some time next week. For now I just want to talk about the weekend and how Relay went.

Friday afternoon around noon, we began setting up our campsite for the Relay at Lincoln High School. It was crazy trying to get everything done and the plan for having Relay inside wasn't fully figured out so there was quite a learning curve and things had to be moved around a few times at the campsite. We were able to finish setting up before the Survivor's Dinner at 4:30 with the exception of some minor details. At 4:30, I went with my Grandma and her friend Ida to the survivor's dinner. We are all three survivors. Of course, you know my story. My Grandma had a tracheotomy 12 years ago from throat cancer and her friend had breast cancer around the same time. The meal was catered by John Guzzardo and it was absolutely fabulous.

We had walking tacos we were selling throughout the night thanks to a very generous donation by my cousin (he owns Kicks and a few Subways). They were a pretty good hit although it would have been great to sell 100 more or so! At 6, the Relay started with the team lap and the Survivor's lap. It's really quite overwhelming when you walk the survivor's lap. Everyone claps as you walk the track and it really makes you realize that THIS is what Relay is about. Celebrating those still with us and later in the luminaria presentation, remembering those we've lost.

Around 8:30 the square dancers were on the floor until the luminaria event began at 9. We were supposed to start at 8 but the auction ran longer than they expected. It felt good being out there dancing again. We've been so busy with Relay and stuff that we've only been dancing twice all year. I wish to thank all of the square dancers that came out to support Relay and me. It really meant a lot to me to see such a wonderful turnout.

At 9, we started off the luminaria lighting with some words/stories from some of us touched by cancer. I was privileged to be one of the speakers at this and I hope that my speech helped drive home some of the messages that the American Cancer Society wishes to send about cancer. At some point in the future, I will post what my speech was so you all can read it. It's actually quite funny. I told the chair that she needs to be careful when she sends out a speech for something, you never give a writer the permission to embellish. LOL I basically rewrote the entire thing but the message was still there. She said she loved it and I did get some applause at the end of my part. It helps when you have one of the more exciting parts and are able to end it with a shouting chant of "FIGHT BACK".

The rest of the night was filled with varying activities, specialty laps, etc. It really started dying down around midnight and continued throughout the remainder of the night. However, John and I stayed all night and were there to release the balloons at 6 AM. I really found it to be awesome and I loved captaining the team this year. We were awarded the silver team award for the money we raised and we finished second of all the teams before putting in the fundraisers from Relay.

John and I both crashed until around 1:30 PM and we agreed we would go dancing Saturday night. When I took my shower, I realized that a fall I took early in the day of Relay, did quite the number on my ankle. It was quite purple and John almost wouldn't let me dance. I'm glad he changed his mind though after I convinced him it really doesn't hurt and that it's probably just bruised.

We went dancing Saturday night. I think we were able to get in three tips and it felt good to be back on the dance floor. I didn't realize how much I had missed dance. It really is one of the best date nights you can have and there are a lot of very wonderful people that square dance as well.

Today is Father's Day so Happy Father's Day to all of you dads out there!!! We are getting ready to go grocery shopping and then over to my parents to unload the trailer from all the Relay stuff we shoved in there Saturday morning. I am very sore today from the knees down. I think I should have stretched out better or need to get back to walking nightly so that I don't have this problem. :)

It's been over a week now since my last seizure so I do believe that we've got the right dosage of meds going into my system now. Now I just have to wait out the 6 months grounding from driving and I'll be back to normal.

Well, I've got to wrap this up. I'm sure there will be more updates now that Relay is over and I have that time back.

My Appointment with the Neurologist

Well, my appointment with the neurologist went as good as I expected it would. He was happy the seizures were under control now and felt that as long as there were no seizures we'd leave the dosage alone. The EEG I had that Monday looked good and there was nothing that was out of the ordinary in it. He is certain it is scar tissue caused from surgery and radiation. We always knew this was a risk because scar tissue can cause problems with seizures and there has been a lot of torture to my brain over the last year and thus a lot of scar tissue.

Anyway, he told me he didn't see a problem with me returning to work as long as I felt good and I'm grounded from driving for six months following my last seizure per state law. He wants me to report to him if I have any other seizures so he can increase the dosage and carry on with the MRI for August as previously determined. All in all he said I seemed pretty sound neurologically and we'll just put this one up as one of the benefits to living with brain cancer. *Smiles sarcastically*

Well, I just wanted to report.

Huggles,

-- Amy

The Seizures Have Stabilized Now

After having between 30 and 40 simple partial seizures on Wednesday and only 9 on Thursday, I have not had a seizure since 9:30 on Thursday night!!! You don't realize how good something as simple as not having a seizure in 36 hours can be until you've dealt with them with high frequency for a few days.

Now my attention turns do other things. I need to get my son ready for camp and John and I will take him there Sunday evening. I am also doing final things for Relay. I have trees to finish, posters to make, packing to do, and of course the final team email to prepare and send. Monday I get to go get my partial fitted for my teeth and I'm hoping that I get to keep a set. We'll see how it turns out. I also have a graduation party tonight for my Harry Potter group Plano Hogwarts. I am the first ever graduate at the site and I'm throwing a huge party. There will also be a surprise but I can't tell you what that is or it wouldn't be a surprise.

Other than all that and hopefully no more seizures, I see the neurologist on Tuesday and I'm pretty sure there will be an MRI in the coming week. I will report what I find out after Tuesday. Friday is Relay For Life. If you are in the area, please come out and support us!!! I'd love to see many of you there. It's at Lincoln High School and it's from 6 PM til 6 AM! From 8 PM until 9 PM I will be square dancing as part of the entertainment for the night so for those that have not seen me dance, come on out and get a good laugh.

I am also hoping to attend our first square dance in several months Saturday night but it will completely depend on how tired I am following the all-nighter on Friday.

For Another Week or So

It's sad to say that you are getting used to something that throws a wrench in your day but I'm getting used to my simple partial seizures. I've had around 40 of these today but honestly some of the time I don't even realize they are occurring. Sometimes they come in the form of extreme euphoria that causes me to not only think I'm extremely happy but to make my mouth smile involuntarily. Other times, of late, they are just coming as fluttering of the eyes or my eyes moving very quickly. They seem to come in spurts of 5 or 6 in a short period of time with a large gap of time between. They only last from 5 to 15 seconds and most of the time those around me don't even realize I am having them unless the elation comes at an inappropriate time or when I am in the middle of a conversation with someone. Even then it's usually just a slight pause until it passes.

Today I went by work in order to copy some things to my laptop to work on from home. It was good seeing everyone and letting a few of the more worrisome ones know I am ok. I have been having more seizures today but I think it is more because I didn't sleep well last night then the fact I have been more active today. I am looking forward to being able to go back to work on the 22nd. It will hopefully be good for my seizures as well if I can keep my mind occupied on other things. Not that I am thinking about them a whole lot but having something else to keep me in line might not be all too bad.

I think the worst part is being "grounded" for the next six months. John won't even let me drive the riding mower to mow the grass!!! Not driving doesn't bother me near as much other than having to rearrange my schedule at work in order to ride in with my parents and having to tell my son he can't do certain things because of John's schedule and my inability to drive. I just wish these things would have waited until after Relay next weekend. I have a ton I need to do this and next week and I will be depending on others to take me to do all of it. As if rearranging things for doctor's appointments isn't bad enough, now I also have to arrange for rides. *sigh*

I wish to thank everyone for all their prayers and offers of assistance. My family and I appreciate them greatly and you can bet we will be taking some of you up on these offers as we need them.

I hope to see everyone that I can at Relay on the 19th. With a little luck I will be out there dancing at 8 PM for the square dance and again saturday night if I'm not too exhausted.

Huggles to all,

-- Squiggles (Long story, I'll explain next time. LOL)

Now It's Simple Partial Seizures

Today has been much quieter than yesterday was but things have not completely calmed down. I was in contact with my doctor today and what I am experiencing is normal and could last for a week or more before settling down. All day I have been having what is known as Simple Partial Seizures. They are not near as severe as they were yesterday and doesn't affect me near as much but they are there.

Basically, the new seizures give me a sudden sense of euphoria and I smile for no reason, most of the time when it is inappropriate. This will last for a few seconds and the corner of my mouth will twitch. Again, I am fully conscious and I don't lose my balance or anything but I am unable to speak when these occur. They only last for a few seconds now. Maybe 30 seconds at the most. They are just really annoying and come quite frequently. I'm guessing I've had 30 today. I guess we'll find out more when I see the doctor on Tuesday.

I am hoping to swing by work tomorrow to visit and set some things up so I can work more easily from home. Unfortunately, I hadn't planned on working from home this week so I didn't prepare for it by moving files over to my laptop. This will be my plan tomorrow and to show everyone that I am ok, despite the seizures. My son will go with me so if there is anything that goes goofy, he'll be there.

I've basically started a new topic in my blog. Not that I've really wanted to open this topic but it breathes some life back into it. Tomorrow is the one year anniversary of my surgery. If things go well, I'll have a little treat to post tomorrow.

He's really been good today, helping me out and being here. I don't even think that my partial seizures worry him anymore. It's sad that a 12 year old has to go through watching these but at the same time, he's my hero more than once now and I think he is a great son.

Thank you everyone for all of your messages and well wishes to both he and I. I love you all. *huggles*

Saved Again by My Guardian

This was not the way I wanted to spend the just shy of 1 year anniversary of my surgery.

Some of you may have already heard about this but today, my guardian angel (aka my son) possibly saved my life (and his) again. This morning, while I was driving to work, I had a seizure for the first time ever. While having the seizure, it caused me to veer to the left side of the road. My son realized this was happening just as the front tire hit the concrete barrier on a bridge and was able to pull the wheel and get us back on the road. Had he not thought quickly and done this, we might have both been seriously hurt.

I managed to get the car to a parking lot and wait for John to get there. While waiting I had two more seizures. I was able to tell when they were going to come on because I got a sense of euphoria and my mouth would switch and attempt to smile even when there was no reason. This would last about 2 seconds before it would put me into a full complex partial seizure. My eyes would flutter and my eyes rolled up into the back of my head. My neck would also stiffen to the left. I never lost consciousness and I could hear everything that was said but I was unable to respond to anyone in any way.

After John got there, we headed to the ER per my neurologist's instructions. On the way there I had another seizure the same as the previous three. Luckily, the wait at the ER wasn't bad at all and I was seen almost immediately. I had another seizure while the doctor was in talking with me. He was able to get a solid diagnosis of complex partial seizure. After talking to my neurologist, I received a shot of Ativan which is a quick acting drug that will stop all seizures but it only lasts a short while. I was also started on the Keppra (500 mg) drug, which I will take twice a day for probably the rest of my life.

After I was released from the hospital, I had to go to the clinic to have an EEG done. An EEG tests your brain waves and monitors to see if anything is misfiring and causing the seizures. I will not know the results of this test until I see my Neurologist next Tuesday.

I have not had a seizure since 8:30AM when I had it with the doctor. With any luck I will not have any more and we can start the long process of monitoring. I will not be able to drive for 6 months after it is proven that the seizures are under control.

The Neurologist and the ER doctor both believe they were caused from scar tissue that is resultant from surgery and radiation. We were told even before I had surgery that I was a risk for seizures and they told me multiple times that radiation can cause side-effects for up to 10 years. I am sure that my neurologist will order an MRI when I see him but for now we are all pretty certain it's scar tissue from radiation.

I wanted to make sure and update everyone. I will keep you all posted on what is going on. For now, all is well but this week will be a big test.

Huggles,

-- Amy

Let's look at Seizures... 101

While discussing my tumor with my new neurosurgeon, the topic of seizures came up seriously for the very first time since I was diagnosed. First off, he wants me to have an EEG. It's a pretty simple brain wave test that will tell us if I am having seizures and not really aware of it. I'm actually pretty interested in this test because I'm curious if it is possible I'm having some signs I'm not aware of. Beyond that, he reminded me that after surgery seizures are possible and honestly right now I am a high risk for them because of my tumor and its location. His advice to me was to educate myself AND those around me so that if I should have a seizure it doesn't take anyone by surprise.

Well, here's the information I have and passed onto those that I work closely with at my job. I figure the chances are if I have one, it will be there so they need to be aware.

First off there are over 60 different types of seizures but they can essentially be divided into two main categories: Grand Mal and Petit Mal.

A Grand Mal seizure is the type of seizure that usually pops into someone's mind first when they think of a seizure. The body stiffens, they lose consciousness, fall to the ground, have convulsions that are usually violent... If you should see someone with a Grand Mal... DO NOT TRY TO STOP IT!!! Instead you should make sure there is nothing near by they can hurt themselves or someone else with, make sure they are away from danger like stairs, step back, and let them have it. You do not want to put anything in their mouth. You do not want to try to stop the seizure because you will only cause harm to them or yourself. You do want to step back in case they get violent so they don't hurt you.

If they are conscious when it is over, don't allow them to get up to quickly and rather make sure they are ok before letting them leave the ground. If they are unconscious, roll them to their side so it is easier for them to breathe. If this is not common for them, call 911

The second type is the Petit Mal seizure. These types of seizures are typically minor and often go unnoticed by the person experiencing it. Some of the things that would be common in my case would be a sudden spacing in the middle of a conversation that lasts 1-90 seconds and then the conversation is completed as if nothing ever happened. Garbled words, distant stares, twitching, and odd sudden change in behavior are also possible seizures. Since the person this happens to doesn't always realize anything happened, it is important that when you are sure they are back to themselves you notify them of what happened. This will allow them to make the decision that they need to on what to do next.

So there is a quick and dirty explanation of seizures and what I have learned about dealing with them. Since I currently am not having them (to my knowledge), I really can't give much information beyond that and know that I am accurate. I realize that most of those that read this don't see me on a daily basis but now you know what to do should you witness anyone having a seizure.