Update

So as I have mentioned in an earlier post, I am now up to 4 pills per day of my medication and it is really working and I can’t believe the effect it has had. I had also mentioned how I wouldn’t be able to see my neurologist until march of next year but i called them back today because I noticed they had a voice mail for me and I was moved up to august but it fell on a day of one of Niki’s important appointment so now it’s very early sept. I’m not sure why it was suddenly moved up, but I am glad that I will be finding out more about my condition and learning and finding out what will be the best for me as far as going forward goes.

 

Today Brings

I spent the morning getting blood work done and stopped at the casino and won $300. Kinda happy about that. 🙂

The afternoon I took the kids in the back yard and let them play in the sprinkler for a bit because it’s so hot outside. I would have taken them into the pool but its really dirty and the neighbor who borrowed our pool cleaner stick and vaccum wont give it back and I even reminded her to on my way in this morning.

“Kind of annoying.”

The kids had lots of fun, we stayed out back for like 2 hours and played and listened to music. Mimi relaxed in the shade with me on the grass. I took a small video of it so you can check that out if you like on my Youtube channel MsSmileyEyez.

I’m feeling good today, I’ve switched into the new routine of my medication which was one pill before bed, one this morning and at lunch time and I take one at dinner and before bed. I have had little aura and no seizures so far. I do believe and remember having one as I was falling asleep, but I can’t be too sure. Sometimes it’s really hard to remember the aura… that leads to a seizure after it’s come and gone.

I’m looking into getting a medic alert bracelet for myself in case I ever have a seizure in public somewhere. I haven’t had one yet in public, hopefully I don’t, but as a precaution I think it’s a good idea to get one.

I can’t believe the positive difference the meds have on me and my body. It’s insane. I am so blessed.

 

Bad Thing About Having Epilepsy

The bad thing about having epilepsy is your condition becomes the reason for everything about you.

I have been taking Dilantin for almost 4 days and they make me feel so tired all the time and drowsy at night time. I still can’t believe I have been able to swallow the pills. It’s challenging but I can still do it. I’m on two pills, but tonight I take 3 pills which is the full dose and then I have to call my doctor for another appointment.

I’m still not sure if their working yet because I have had a lot of seizures. I am being accused of not taking them now because I don’t feel comfortable taking pill in front of people because I have a sensitive gag reflex and when I take them I throw my body forward in a jolt and close my mouth tightly, tiling my head back enough for the pills to sink down my throat with the water. I have to take them in front of the mirror to position it on my tongue in the center back of my tongue.

Because I have still had a lot of seizures I guess it makes it look like I’m not taking them. People must think I enjoy having seizures.

I just want them to go away, but as I hear they can’t be cured the meds just make it less or stop but you can still have them. That’s not very comforting, but I want to do what I can to at least stop them. No one will even let me leave the house without being with someone. Not my doctors orders, just people controlling my life, I’ve had a lot of that growing up and i’m thirty and still getting it. I’m just going to tell my doctor about it and bring the people who most tries to control me so that the doctor can say that I am able to go out and enjoy life.

I feel a lot calmer and relaxed now and my mind doesn’t seem to wonder as it used to. Things aren’t so foggy since being on the meds so I think to some degree they are starting to work, but I’m still not sure if they are helping the seizures yet. They seem to be helping the after effects and before effects of the seizures that I used to get which altered my moods and made me feel foggy and confused all the time. I’m only confused sometimes now, when I’m having aura or about to go into a seizure. I usually have at least 10 minutes when I feel one coming on. I’ve read most people don’t have warnings before, sometimes I don’t but I’ve noticed since being on the meds I do.

Hoping the meds stop making me feel so tired soon, I can’t wake up in the morning and I’m tired most of the day. Activity seems to trigger a seizure lately.

Yesterday before a seizure came I had aura in a memory flash back form and I remembered through out my life people used to make fun of me and joke that I looked like I was convulsing when I danced, or that I looked epileptic. Or acted like I was on drugs because I’d get an overwhelming feeling of happiness and they used to say I was too happy to not be on drugs. It made me feel bad, I had this sadness rush over me. I wish I would have known about my condition when I was a child before it progressed. No one clued in enough and now I’m paying the price of it. It just doesn’t seem fair to me. Life has been so hard and although I now understand why, I still feel really sad about it and wish someone would have done something, said something.

My doctor and every specialist I have spoken to now thinks it’s so bizarre how it wasn’t looked into. It was just classified as, “episodes that I sometimes get” no big deal type thing.

Makes me feel like I wasn’t cared enough about for anyone to do anything about it. I even remember teachers noticing staring spells and my head dropping and telling me about it which I was confused by, but they never even suggested it being a seizure. A paramedic years ago asked If I was having one, but I had no idea what they even really were and said no. Why didn’t he say he thought I was or had one?

I just don’t understand that.

Results

Turns out I set my alarm for 7:30 am and I could have set it for 8:00am wake up because my pick up time was five to nine because my appt was at 9:30am at the hospital. “Sigh”

I managed to rest in bed after getting the kids up, until I had to leave though, so that was good. I’m still tired though.

I got to the hospital and checked in and then made my way down to ambulatory care to see my Cardiologist for the first time who was very nice. I really liked him. He made me feel like he was listening to everything I said and cared about all my concerns and reassured that he was doing everything to find out what is going on.

So, my results for my tests came back normal, but he doesn’t want to completely rule out my heart because he says he thinks I still may have an arrhythmia so I will be going to do a test called a LOOP where I where another, (smaller) holtor monitor for a few weeks. I can take this one off to sleep and shower though, so that’s relieving.

I told him all my concerns and symptoms and talked him through what I experience and what happens afterwards, (how I feel…” He right away said he believes it is Partial Seizures. So he will be also writing a letter to my Doctor and asking him to refer me to a neurologist to get tested for that, so I will be getting a few tests done with that, as soon as it’s set up. He said their may be a wait for that, but my doctor may have some connections and be able to get me in sooner.

I feel relieving knowing that doctors are finally looking into this because it means I will know the cause and perhaps find a way to lesson the episodes.

I am nervous obviously about what the results for that will be, but I am thinking positive and just taking it step by step. So now I have to wait for a call from my Cardiologist for when to get the LOOP set up and also make an appt with my Doctor for 11 days from now to get my referral all set up. My Cardiologist was very surprised Doctors have passed this by all those years and no one has looked into further testing. He explained that fainting spells are always usually linked to the brain or the heart and that’s why it’s so important to do the testing to rule out those two things.

My Baby’s The Bomb

Does this monitor make me look fat? :p

It looks like I’m pregnant now, I should go out and see how many people open doors for me and ask how far along I am. Haha

“Can I touch your belly.”

“OMG BOMB” “RUN!”

I’ll chase after them, “Wait come back”

 

Holtor Monitor

At 9:30 am today I got my Holtor Monitor hooked up. I had to lift up my shirt while the lady doctor wiped my chest in certain places with rubbing alcohol and a scratch pad thing which really burned. Then she attached the little things to it.

It burned even more. The burning lasted for about 20 minutes, which sucked and now the strap that holds the monitor on weighs on my back and my back hurts. Not going to be very happy today because it’s very uncomfortable. “Sigh”

Tomorrow I go back at the same time to get it off and then my stress test begins. I’m not looking forward to that one.

So far i’ve had a few things like shortness of breath from cleaning up toys I’ve had to document on the form. Or picking up my son. Simple things that always make me out of breath and cough.

When I first came home Rick said it looks like I have a bomb attached to me and advised me not to go out walking around. lol

It does look like a lot. :p