Changing things...

Okay. I'll debrief you quickly. I saw my neurologist in mid-September and she decided to lower my Lamictal XR since we are now using my Keppra XR as the regulatory drug. So, for the past few weeks, I've been taking:

Lamictal XR 200mg 2x/daily

Keppra XR 1250mg 2x/daily

Zonegran 25mg at night 

So far, still feeling good about my decisions. It feels good to be somewhat back to normal. However, it's November and I'm still not driving with Colin. Ugh. 

I'm going to reopen the discussion with Dave during the holidays and have him put the car seat in my car. I'm going into my 6th month with no changes. Eventually, I am going to have to be allowed to live a normal life. Dave said he wanted me to wait until Spring - but I think that's kind of insane to have me wait that long. His logic is to wait until the winter is over and avoid the snow. But, just because it's winter months doesn't mean automatically there is snow everywhere. 

Signing off. That conversation juat frustrates the hell out of me.

I'm late on posting this...

So. 

It's been 13 weeks and 5 days with no seizures, petite seizures, flashes, etc. I can't say headaches/migraine because believe it or not, I actually was back in the hospital about 2 weeks ago - for 2 days!

 

It actually was nothing neurologically-related (which is great), but I was hospitalized with viral meningitis! This seriously would only happen to me. 

I woke up at 3am with a horrendous migraine. No flashes, but I couldn't see. I couldn't focus my eyes and it was the most unbearable pain I've ever had. Dave got me my migraine medication and it took the edge off just enough for me to fall asleep. When my alarm went off, I could barely function, but I was determined to get to work (I actually started a new job at the end of July and I was only two weeks into my new job).  Regardless of whether or not I could see. Ha.

My new boss is amazing. He saw me and immediately said to me, "I can see it in your face. You've got a migraine. Go home." I had 2 calls and a training I was supposed to be on hat day, so I wanted to make it through the first call before going home. ...I didn't. I made it about 45 minutes at work before throwing in the towel and going home.

After sleeping until 3pm, I attempted to eat something. I couldn't lift my head off the kitchen table while I was trying to force the food into my mouth. It really was so much pain. I still really couldn't see, either. Dave was messaging with my neurologist (our hospital has basically a texting system for the doctors) and they gave a few suggestions but said if it didn't get better to go to the hospital. We ended up going. I not only had this headache, but a fever (101.9) and a stiff neck - the symptoms of meningitis. 

Once they determined that I had meningitis (via spinal tap. Awesome), I was admitted. They ran a bunch of blood work to figure of what kind because it can be caused by several different things. The most common for it is herpes, enterovirus (basically the worst common cold ever) and Lyme disease. It was determined that mine was caused by enterovirus, which happens to basically 1 in 10,000 people. So of course it's me. Lol. As the doctor said, "it's just very shitty luck."

The treatment for viral meningitis is basically pain management and waiting it out. The reason they kept me in hospital for two days is because they were waiting for my fever to break and seizures can be a side effect of viral meningitis, so they just wanted to make sure that I was getting better, not worse.

As much as this sucked, I'm relieved with this. It wasn't neurological. It would've happened regardless or not I had epilepsy. My medication is still working and now I'm 3.5 months out with no problems. I only had a headache for 3-4 days after I left the hospital and felt a little nauseous and sore from the spinal tap.

I don't need to ever do that again. But again, it wasn't neurological and I'm totally thankful for that.

8 weeks!

Today is officially 8 weeks since my seizure and I'm seizure-free. Other than the fact that my allergies are out of control (thanks, Lehigh Valley), I feel great. Still no flashes, headaches, seizures, microseizures, etc. No sign of them either *knocks on wood*

I'm still feeling really good about the plan we have in place. Once we reach 12 weeks (which is August 19), I'll feel like I can exhale. Every day that goes by though, I know that we made to right decision. I'm one day closer to having a normal life, again. 

The first week of November, I'm going to start driving with Colin and being able to stay home with him. I don't want to continue to be babysat when I am fully capable of taking care of my own child. So, I have 101 days until that happens. I probably will start a countdown on each post to November 1, as well. I wanted to make sure that I was driving with before the weather started to get bad. That way I'm not driving with a toddler for the first time - and there's ice on the ground.

Here's to the next 4 weeks!

Update - 25mg of Zonegran

Yesterday was 6 weeks since my seizures and I have officially been on the 25mg of Zonegran for 10 days.

So far, still no auras, headaches or seizures *knocks on all the wood I can find* I feel good. We are currently on vacation and for the most part, I've resumed normal life. Which feels awesome. Every day The goes by,  I'm starting to worry less and not anticipate the worst coming. But, I also am taking much better care of myself. I can't stress enough how much that has made a difference in how I feel not just physically, but mentally. 

Also, we got Colin's hair cut for the first time. Mommy cried pretty hard. Haha! I miss his baby curls but he looks cute. 

He's getting so big! 17.5 months old already! 

Weaning

Just checking in to let everyone know how the weaning process of the Zonegran is going.

I'm now down to 50mg of Zonegran 2x/day. My original dose in the beginning was 150mg.

So far, no auras, no headaches, no microseizures or actual seizures and Wednesday will be 4 weeks since my seizures. I probably will check in every 4 weeks I'm seizure-free for 6 months and then again at the one-year mark to celebrate :)

I feel like we have a good plan in place.

I'll let you know how I do on just the 25mg of Zonegran once I wean down and have been on it a week. We are now only using it for migraine management.

Dr. L appt - New Plan

I went to go see Dr. L today with Dave to check to see how I'm doing after starting the Keppra. I told her I'm feeling great. Honestly, my mood has completely changed - and probably not in the way she expected. Keppra is known for causing something called "Keppra Rage." There are scary stories of people breaking things, screaming for no reason and being completely out of character. I, on the other hand, got a new perspective on life. My life is good. I am happy. 

She did a few simple tests (following her finger, having me walk, etc - I have terrible balance, lol) and we talked about what my next steps were with my medication. Was I go to stay on the Zonegran? What should we do with the Keppra since I was so tired? What did I need to do next? She must feel very confident though that we found the right combination because after a year of telling me that we shouldn't have any more kids, she brought up that Keppra is good for pregnancy and that I would be safe. Unprompted. Not saying that's what I want, but it's the first time she's done it. 

So after all is said and done, my dosing will look like this:

· Lamictal XR 225mgs 2x/day

· Keppra XR 1250mgs 2x/day

· Zonegran 25mg at night

She's switching me to the XR of the Keppra for two reasons. First, so I don't have to be on such high of a dose. Second, she thinks my body will react better to it (not as tired, steady dosage,  etc). Literally the only reason that 

I still will be taking the Zonegran is because it has worked so well for my migraines. That's why it's such a low dosage (I originally was on 150mgs 2x/day). If I'm migraine-free for an extended period of time, she will stop it completely. She also talked about lowering the Lamictal eventually. I think her primary goal is to have me solely on Keppra XR in the future. I was maintained on monotherapy for so long. She msg think that with the right drug that it's possible again.

Also, I am going to begin to start taking 400mg of Magnesium supplements since certain over the counter meds and foods can deplete your Magnesium levels, which can actually trigger seizures. 

She asked me to hold off on driving until I see her again in early August. Legally,  I'm allowed to drive. She just wants to play it safe with all the changes we are making. 

I think that this is a good start. We will get this all figured out. I feel I'm getting healthy. I'll update as I make the changes ans let you know how I'm feeling. 

This is my fight song...

I heard this song on the way home the other day. I think it has a great message. Even more so now.

Here's to not giving up. Here's to embracing life. Here's to still being strong.

Expletives. Expletives. Expletives!

That's all I can think right now. EXPLETIVES!

I can't believe that I have to write another one of these posts.

On Wednesday, May 27, driving on my way to work, I didn't feel right (and this honestly hit me fast. Like, "WTF?" fast). Usually before I get seizures, I get auras/flashes, my thumb will twitch, then my thigh will twitch. That progression usually takes 5-10 minutes, so I have time to realize what's happening and get to safety and get help. 

This time, without warning, my thigh began twitching. While I was driving. My entire life, this has basically been my greatest fear. But, I pulled over, still seizing, called Dave and told him what was happening. I was able to dial and talk on the phone and explain what was happening to me, which is amazing. The seizure actually stopped while just was still on the phone with Dave. He left to come get me and I focused on my breathing and stayed calm while waiting for him. It sounds funny (I know it's not), but I remember thinking, "Well, that wasn't safe..."

I still didn't feel right. Dave and I got back to the house and decided that we should go to the hospital. I needed to get checked out. My leg still felt numb and I just had this feeling it was going to happen again. And I was right. My leg began twitching again and Dave talked me through it. He helped me focus. Thankfully, it only lasted 30 seconds. 

We walked into the ER and explained what happened. Considering I had seizures so close together, they brought me back pretty quickly. Unfortunately,  while I was getting checked out, my leg started twitching again. I remember thinking that I felt like they weren't moving fast enough to get the seizure under control and I was getting frustrated. They just kept telling me to relax and in my head, they were dilly dallying around the room not doing anything about the seizure and just going through the rest of the routine tests. Since I got frustrated and panicked though, my seizure turned into a full fledged seizure and I started convulsing. It only lasted about two minutes. They got the medicine in me pretty quickly through the emergency IV (liquid Ativan I'm assuming). I remember making eye contact with Dave, him telling me he loves me and that everything was going to be okay. I tried to say, "I know" back to him, but it came out more like, "Ow."

I stayed the night in the hospital. They did the routine EEG (which came back normal only 4 hours after a seizure?), called my neurologist (who actually interrupted my EEG), and I was seen by three different hospital neurology team people to be assessed. 

The final decision was that the Zonegran isn't working like it's supposed to and that I should switch to Keppra. So, right now, I am weaning up to Keppra 1000mg 2x/daily. I will take this with the Lamictal XR and wean off the Zonegran completely. They want me to make an appointment with my GP and my neurologist now that I've left the hospital as well as a follow up. So far, the only side effect from the Keppra I've noticed is that it's made me exhausted. Pretty much all the time. I'm hoping that once I'm off the Zonegran though, that it'll change. 

I'm going to be okay. It sounds crazy, but I came out of this feeling like we are finally going to get this figured out. I can focus on the fact that it happened and that it sucks or I can focus on the fact that I'm OK, I have a family that loves me and overall, I have a lot to be thankful in my life. This is no where near the end for me. My life does not stop here. 

My husband is extraordinary. I love him more than anything. I would not be as strong as I am without him by my side. My baby boy is my world and I know that epilepsy or not, he is counting on me. He loves me unconditionally and still needs me now. 

You'll still be hearing from me. 

Memory Bank #164

I should never need a reason to be happy, but if I genuinely need one, my family is it. I forgot to post these the other day so I'm going to do it now before I forget again:

I have a son that most nights is a great sleeper now. Some nights though, he will fight me tooth and nail about going to sleep. He will flail. He will cry. He will push and do everything to make it as difficult as possible to get me to contain him to get him into a comfortable position to go to sleep. On this particular night, though, he didn't flail. He didn't cry or push. Instead, he lifted his head, pressed his nose to mine and said, "Boo!" and then quickly buried his head back in my chest and giggled. He repeated this about six times and each time laughed harder. By the third time, I lost it and was giggling with him. After he calmed down, he began "talking" to me. Colin showed no signs of slowing down. I have a son that no matter how tired he is, would rather play with me and talk to me, than sleep. While I've never doubted for a minute that my son loves me, here's physical proof for me to look back on when I need it.

I have a husband that I've been to the end of the earth and back with. There is no one who knows me better, takes better care of me or makes me laugh as hard as he does. On days where I don't feel it, he will remind me that I'm strong. That it's not about getting knocked down 11 times, it's about getting up 12. He reminds me it's also about enjoying the world around me and continuing to do the things I love with the people I love. Whenever I think about the favorite parts of my day/week, it usually isn't some event like going to a family member's house for dinner or something being accomplished at work. It's usually something that happened on the car ride there or sitting on the couch with Dave and Colin playing with us. Things like that stick out to me. Yesterday, we got to go on a dinner date and we were talking about work. He was talking about his company's manufacturing shipping process and there was a split second it clicked for me that it was great that we can really connect about his work now, unlike when I worked in retail (I work for a distribution software company - that's not new, it was just a thought I had in the moment). Later last night, I made iced tea. I do this every night and have been doing it pretty much all 6 years of our marriage with the exception of the 10 months we lived with his parents. When I came down with his glass, he kissed me (for my "payment," another ritual, lol) and say, "I love ya!" There's something about the way this makes me feels, every night, that makes it special. He is my best friend and the love of my life. I don't want to share my journey, my stories or my couch with anyone but him for the rest of my life. I am loved. Here is my proof.

My family is my world. I will be collecting memories for when I need them, but I have begun feeling better already.

Feeling Good

It's been over 6, almost 7 weeks since my last "microseizure." I've had no flashes, no inkling of anything. *knocks on ALL the wood* I feel great. I really think we figured out what was causing them. My triggers were low blood sugar, lack of sleep and the flickering of light that strains my eyes.

I wear my sunglasses literally every time I go outside. Even if it's a grey sky. I wear them until about 6pm. After that, the sun has set low enough that the reflection isn't bothersome. I think that has made a huge difference. 

I'm constantly eating, haha. As I'm typing this up, I'm actually eating peanut butter and crackers. Thinking back, a lot of my flashes occurred when my blood sugar was low. The longer I waited and the hungrier I got, the more likely I was to get a migraine or worse. Speaking of migraines, I haven't had one in months, which is a miracle for me.

As for the lack of sleep, I'm realistic about what I need now. Just because I can run on 5 hours of sleep doesn't mean I should. I average about 7.5 hours of sleep every night except for when Colin wakes up. He's been great though, except when we go stay at my in-laws. He doesn't sleep there. Ever. Never has. It's rough, so I need to be healthy so we can stay home and not stay there anymore and get some normalcy.

I'm also in a better place. I'm happier. I love my life and my family. I'm so lucky to have them. I have started enjoying life for once. I preached for so long that epilepsy was just a diagnosis and not a lifestyle and unfortunately, I didn't listen to my own words. I let it get to me. But not anymore. This is my life. This my path. And I'm going to enjoy every minute of it.

Chin up, friends :)

Ernest Hemingway "Broken"

We are all broken. That's how the light gets in. - Ernest Hemingway, American author, 1899-1961

Neurology appt

Dave and I went to go see Dr. L today. We went to try and figure out a new game plan for me since I was having such severe weight loss and the episodes. 

She did some tests (normal finger tapping, walking back and forth, etc), took my vitals (BP was 110/59 - which is OK but low for me) and weight (128.4 with clothes on, so about 30 lbs lost since on the Zonegran). She asked Dave a lot of questions. He's a better judge than I am with this since he's the one witnessing it. 

The only thing that I could be honest about is how I'm feeling. She asked me if I'm feeling stressed or depressed and I answered honestly. I'm overwhelmed. I'm sad. I'm stressed. I'm worried about so many things. I'm crying a lot. I'm all the above and more.

And I've just got to figure it out because I can't take anything for it. I know Dave is there for me through this. I know Colin loves me. No one has to tell me that. And I know I have to be strong for my family. 

What Dr. L essentially told us is that I've been having microseizures (not PNES). They are lasting less than 30 seconds and usually brought on by light (reflective) and stress. This is so incredibly disappointing. I really thought this was under control. 

The plan from here on out is to raise my Zonegran by 50mg 2x a day, monitor my weight and make sure I ALWAYS have sunglasses (*sings* I wear my sunglasses at night…). The Zonegran really has done wonders for my migraines. But the weight loss and the microseizures need to be under control, too.  

This is getting ridiculously long, I know. 

I need to "man up" and be strong. I need to take this head on and do the things I need to in order to be healthy and happy and to keep my family healthy and happy.  I need to start wrapping my head around this. 

I also need to come to terms with the fact that Dave and I probably won't conceive again. Colin is amazing. He is perfect. We love him more than anything.  But the risk of going through another pregnancy and having my physiology change again, and then having the potential for more seizures, is high. We would have to talk about adoption if we wanted more. It is very hard to hear someone say that you aren't ALLOWED to do something as opposed to CHOOSING not to do something. It's a big pill to swallow.

This turned very disjointed,  I'm sorry.  There's a lot in my head. You're probably going to be hearing from me a lot lately. 

CS Lewis "Hardships"

Dave is amazing. He knows what I need to hear, at the exact moment when I do.

When I was at work today, he sent me this. It's a quote by C.S. Lewis (British Novelist/Poet). 

Any hardship that comes, we will face it together. We will build an amazing future and keep moving forward. This is a bump in the road, not the end.

Jumping Back In

I never finished that last post. Life picked up at an alarming speed.

Colin turned ONE and has been absolutely keeping us on our toes. He's changing every single day and sometimes, it's hard to even keep track of all the new things he's learning. 

(I'm doing this on my phone, so I'm pretty sure that picture is massive - sorry)

The reason I'm updating is because I've decided that I'm going to begin to update this regularly again (or as much as I can with a toddler, ha).

I don't think in the last post that I put that they put me on a new drug in the hospital along with the Lamitrigine ER. I'm now also taking Zonisamide 100mg 2x daily. It's funny I tell you this now because my neurologist and I are going to discuss me switching to something else on April 6th.

Since being on it, I've dropped 30 lbs (this sounds like something weird to complain about but when you're losing 3 lbs a week for no reason, it's scary), my hair is falling out in clumps and I'm still having PNES episodes. They happen probably about every 4-5 weeks and are brought on by stress. Definitely time for a change.

I'm scared to change again. I don't want to switch and have another seizure. I can't go through that. I can't put my family through that. But, my neurologist (or at least Nurse Gary) seems really confident that the Zonisamide is the root cause for the PNES episodes and all he other symptoms and once I switch, that it will all stop.

I really am crossing all of my fingers and toes on this.