Monday, April 7, 2008

*Warning* Emotional Post

It was a year ago in March when I had my first seizure and in May I had my last seizure. You would think I would be over it, right? Well, obviously I'm not. It has become difficult for me to talk about this issue in particular because it still makes me emotional and I am embarrassed that I can't get past something so simple from so long ago because it really wasn't that big of a deal. I have somehow turned it into one.

A little background on what happened. I had a seizure alone in my room at night in March. I had no idea what happened. In the morning I went to the emergency room. They did some tests, said I had a seizure, and sent me home. I met a neurologist who did more tests, said he thought I was fine, and sent me home. In May I had another seizure at Casey's apartment, also in bed. He called an ambulance and I went to the ER. They put me on meds to keep me from having any more seizures. I will continue taking them twice a day for at least 3 years.

Now I should be fine. I take my medication and it has been almost a full year. Unfortunately I'm not. At first the meds were making me feel really weird and that made me paranoid. I didn't like that walking in a bubble feeling. The doctor said wait it out. It took awhile but I did adjust. The meds were nothing compared to my fear of falling asleep. For some reason I associate the feeling of falling asleep or just sleeping in general with the pain of having a seizure. Over the past year I have had countless nights of intense anxiety and panic. There has been a lot of sobbing and an irrational fear of dying. This usually happens when I'm trying to go to sleep.

I started to see a Neurological psychiatrist for a short while. This was when I wasn't having the bad nights as frequently but the anxiety wasn't gone. Talking to her made me mad and only seemed to make my nightly panic worse. She did give me sedatives that I tried not to take but on a couple occasions were a huge help. Every time I saw her I was upset all over again. I stopped going. I also couldn't really afford it because my insurance barely covered anything. I thought I was strong enough to get through it on my own.

For awhile there I was absolutely fine. I always take the meds. I'm able to sleep. I'm not disoriented at work. I'm no longer causing problems in my own life. Then out of nowhere it came back last night. I have no idea what happened or what could have triggered it. I have not been thinking about it, talking about it, or doing anything I think might cause it. Both Saturday and Sunday were very laid back days. Didn't do a whole lot. Ate normal foods. No drinking. For some reason when I tried falling asleep last night I started freaking out. I know when it is happening that it doesn't make sense. I know I'm being irrational. I can't help it. My heart wouldn't slow down. It was beating too fast and no matter what I did as far as breathing or focusing on meditating, it didn't work. I started to hyperventilate. For hours I repeated to myself "You're okay, you're not going to die." I felt like my brain was spinning in circles in my head. I caught myself holding my breath and clenching my jaw. I tried taking a sedative. Nothing was working and the last time I remember checking the clock was 5am. I must have finally fallen asleep.

I know I sound crazy. I know this makes people think I'm a hypochondriac. I just don't know if anyone understands how terrifying it is. It sounds like such a silly thing and yet it is tormenting me. I am doing this to myself and I can't stop. What can I do at this point? I guess keep living and keep hoping it goes away.

Like I said before, it is difficult to talk about this sort of thing. I find it very embarrassing and it makes me feel like a weak person with no self control. I don't want to talk to anyone in person about it anymore so I turn to my blog to get some things out in the open. Hope I didn't scare anyone away from reading in the future. I'll go back to the usual style of Knight Ramblings tomorrow.


Tall Lanky Jew said...

I find that year anniversaries of traumatic events cause me to have some anxiety as well. But... the good thing is, it goes away. 100% of the time. :) xoxxx

Anonymous said...

Sis: Don't you worry about what anyone has to say.. we are your friends and cyber family!! When I have bad days you are always there to leave a message to pick me up!! and I have a lot!

I am sorry that this is happening, but it also sounds like just a tinge of PTS, but not the whole disorder thing! This happened to you and it freaked out, it is almost like in your mind, you think nothing like that would ever happen and it did! Get it out! it is great to get it out it, it helps you get over it and deal with it at the same time.. We are your support!! You will get through this!
I am still working through some stress that happened in my life a long time ago!!!

Shalom & Ahava!!!

Your sis

Doc said...

Wow... I can tell this has seriously scared you and I can't say I blame you. Having something like a siezure that you can't control is certainly frightening enough but reactions and anxiety to the treatment just makes it worse. I have never had siezures but I have had adverse reaction to medication (that medicine head feeling) that makes you feel "dumb" or slow in reacting. I can sympathize with that. Hopefully you can mentally find a way to deal with one or the other. I am sure that it will come in time... but please don't ever discount your terrified feelings or be embarrased about them because to you they are very real. If it helps you continue to blog about it, talk to someone and prayer about it as well... none can hurt and hopefully will help.

Be Well friend

Tink said...

I think you're being a hypochondriac about us thinking you're a hypochondriac. ;)

Girl, you're not crazy. I had a friend who had seizures. He would panic every time he got in the car. He'd never had a seizure in the car before, but that was the one place he was most afraid it would happen. I don't know how, but he eventually got over it. I don't know if it was the medication, the therapy, or just the fact that his worst fear never happened.

You're going to get through this. Just don't beat yourself up for being afraid, OK? As if having to worry and take medication weren't bad enough, you're going to make yourself feel worse? Don't do that. And know that we care.

Mike said...

Now, don't get pissed off at me for comparing you to a dog, but, my old dog had seizures.

It's the only experience with seizures i've had, and it looked scary and painful for her. She got really scared and her hind legs wouldn't work for up to an hour after.

Everytime it happened I would hold her and pet her and she would calm. Eventually they became less frequent and she almost never had them after that.

She lived to be almost sixteen, which is like 108 in human years. So, all indications are you'll live to be a really, really old crotchety lady.

And it takes guts to write about it to the public. Good on you.

R.E.H. said...

I'm so sorry to hear about this.

To begin with - it is totally understandable that you are afraid. Now, I've never had a seizure myself, but I have witnessed people going through it, and it seems a very unpleasant thing indeed. Even if it isn't going to kill you, the experience, I'm sure, is not one you want to have again.

You got some meds, but it doesn't appear (from what I read) that the doctors have a diagnosis for you... as to what caused it? That is also a scary thing. I had a heart "situation" once, and went to the ER. Nothing was wrong with my heart (Bless the Lord), but they couldn't tell me what it was... they decided to call it an anxiety attack. Quite probable.

I hope you find a way to get the nervousness out of your system, and in time I'm sure you will. For now... know that my thoughts are with you!

minijonb said...

talk about this as much as you need to! this can be a very hard thing for people to get over, and the fact that you are talking about it and open with yourself not running away from reality is half the battle. you'll be fine. the feeling overmedicated issue is really tough, but it sounds like you can work that out with the docs...

Jay said...

True story:

I have a very good friend who I used to work with who had an 18 year old daughter who suddenly started having seizures. The doctor kept accusing her of being on drugs, even though they drug tested her every time she had a seizure.

Well, one day they were in Little Rock and she had one at lunch at Wendy's. They took her to UAMS and then they admitted her for testing and discovered that she in fact had epilepsy. If her doctor had quit being a prick and actually sent her to a neurologist they would have found out earlier.

Anyway, she was on medication for two years while living at home and going to community college. Then after she graduated from there she enrolled in a collage about 2 hrs away.

So her parents took her down there and helped her move into her dorm room and all that good stuff. The next day they came back home in the afternoon. The next morning Tracey (the daughter) called her mother and was crying and just a complete mess. She was afraid to go to sleep because she was afraid of having another seizure while alone.

Just wanted to let you know that it's completely normal. It happens to lots of people and there's no reason to be embarrassed about or want to hide it or anything like that. And it certainly doesn't make you weak!

Jo said...

I don't think you're remotely crazy. My son had a seizure when he was 5 months old, it was a one-time deal from a fever that skyrocketed suddenly. We were on the penthouse level of a big hotel & the phones chose that moment to go down. The situation turned out fine...after a period of white, bone-deep fear. For the longest time, the sequence of events would play over & over in my head in slow motion. I watched him sleep, and checked on him throughout the night for years...I really didn't care that it was obsessive--this was me coping with my trust in things, how thoroughly that had been shaken, trying to assert some control after a situation that flattened me b/c I had none.

I think your self-awareness is going to lead you through this just as it has been. Your fear is based on something very real that has happened to you--I don't think it's irrational that you're so anxious. I understand why you don't want to be controlled by fear, but you're absolutely entitled to feel it, nothing weak about it.

Would it help to break it down into smaller hurdles when you're going through this anxiety?--like on a night when you can't sleep b/c you're terrified, maybe set your alarm for 3-4 hr intervals rather than hoping you'll get to sleep but ending up staying awake the whole time?

I'm glad you shared this, I hope it's cathartic...and not at all a burden on your blog readers, you should talk about it whenever you want.

Anonymous said...

WOw, looks like I picked a great post to walk in to...

It's nothing to be embaressed about and it sounds like you are doing pretty good.

Thanks for stopping by the cupboard.

captain corky said...

You should never feel embarrassed about sharing your feelings and I appreciate the fact that you felt you come to us with this.

I've never had a seizure but I have panic attacks from time to time. Right now I can talk myself through them, but they really suck and come at the worst times. My sister takes Xanex when they get really bad for her.

I hope just writing about it has made you feel better.

gr said...

oh man....I'm glad Casey is so supportive, but I am terribly sorry this has happened to you! and the meds!

NYCeCe said...

I dont really want to "insert an inspirational message here" so I will just say that in my opinion, you writing about this may be a step towards healing.

Hopper said...

You are right... it is irrational to fear death... why fear the inevitable... each breath is a gift we should not take for granted...

Knight said...

I am so surprised by the response I got here. Thank you all so much for everything you wrote. You have no idea how comforting it is. Especially the stories that help me know I'm not alone and overreacting. Even though I don't actually know most of you I really respect what you have to say and I appreciate it more than you will ever know. Sometimes it's easier to understand and relate to what is said here more than friends and family simply because of the disconnect. Thanks everybody.

Doc said...

Just checking in on you... I am glad that you got responses that helped ease your mind.

Freakazojd said...

Wow, thanks for this honest post - just like everyone else, I think it's totally understandable that the experiences with the seizures would shake you up. I feel like there's not much I can add after reading the other comments, because there are some excellent suggestions and relatable stories there, but I just wanted to let you know that I was throwing my hat into your support ring. :)

Farmer*swife said...

Definately not over-reacting. My DH's cousin's wife had one out of the blue one night about five years ago or so. It woke her husband up.

Then, she too had another one. They put her on some good meds. She was leary because they wanted to have a baby. I think they had to keep her on the meds but a smaller dose or something. Everything turned out fine and they have a beautiful little girl.

Though, she will forever continue with the medication.

My daughter quit breathing on me when she was a few months old. Flipped me out! Sleep apnea and reflux were the cause. She's almost five now. I always check my kids through the night. And, quite often I still feel to see if she's breathing.

She's fine. But, I can't help it.

Lastly, I really think you should see your doctor about either an anti-anxiety med or possibly xanex like corkymentioned. That you only take when you feel that impending doom coming on to relax you.

I have had a full out panic attack too. I thought I was dying. My arms were numb, I was extremely light headed, I couldn't breath, My chest hurt so bad I thought I was having a heart attack. I had to go to the ER too.

My Dad says it's some chemical thing that runs in his Mom's side. He said it usually hits in our thirties. He was waiting to see if it would happen to me.

Ever since that bad one happened (and I don't know why that particular day) I realize that they ARE real and not just in people's heads.

DH didn't totally understand it. My Dad had to explain it to him.

Hang in there!!!

GMEyster said...

Wow - what a supportive, fantastic group of readers you have attracted, Knight :o)

You are insanely strong. Every time I see you, you make that more clear.

Talking about my fears makes me feel better. Always. I'm always so surprised at how many people often feel the same way I do. I back myself into a corner sometimes, thinking I am the only one that could possibly be insecure, or afriad or lazy or...whatever. More often than not, it just simply isn't true.

Good for you for seeking change and expressing your thoughts here!

Newt said...

Aww honey, you're not alone. I don't even have anything as terrifying as a seizure in my past. When the hubster leaves on business I have had major panic attacks about dying while he's gone. Because there would be no one to take care of our dogs and cats. I can't count the number of nights my heart has raced up and out of my throat and I didn't sleep a wink simply terrified of the idea that I could die and then my babies would starve to death. It's not irrational, it's human. And I'm glad you shared it.

BBC said...

Seizure doesn't tell me a lot. Epileptic?

For hours I repeated to myself "You're okay, you're not going to die."

Many is the time I've gone to bed hoping I wouldn't wake up the next morning, I'm okay with this so called 'dying' thing.

Many is the morning I woke up only to find myself still here. Well fuck, off to work then.

Don't worry about it hon, take a deep breath and tell yourself "No worries, if I die I'll still be here in my omnipresent form anyway. And if I do die I'll just have to fucking go to work anyway."

Remember, no worries, you can't die you silly girl. hugs.

I agree with not making more of us. But tell that to the religious nuts and the ignorant.

Get fixed, get on birth control, whatever. Then get it up, get it in, get it on, but don't mess up her hair doooooo.

Tall Lanky Jew said...

I'm not sure why... but I think that 'bbc' may be my hero. I can't figure it out. It's just a feeling I get! Honestly

Reb said...

There is nothing to be ashamed about! Medical conditions are a fact of life, some people are fortunate in that their only "condition" is being alive! The rest of us, well, we range from mild allergies to cancer survivors to CF & MS and so on, the list is endless. No reason to be embarrassed about something you have no control over whether you get it or not.

Why on earth would we think you should be over it? It is something you will need to be aware of (not obsessed about) for the rest of your life. I hope you got a proper diagnosis and they didn't leave it at: "you had a seizure"! There has to be a reason for them and you should find out what that reason is.

I wish I had some sage advise on how to calm yourself when you get anxious, but I don't. I haven't hyperventilated for a long, long time, but I do remember how awful it feels. All I could ever do is concentrate on getting my breathing back, which meant (for me) a concerted effort to exhale.

I hope that this was cathartic for you and will help you to put a different perspective on it. There are a lot of people who know just how terrifying it can be just to be in a panic attack and alone. I am pretty sure the seizures themselves were even worse.

Keep your chin up dear and never be afraid to tell us anything. You'll be fine, I can feel it.

Darla said...

I have so much I want to say but I can't get it into words. I'm usually good at saying what I need to say (crisis counselor) but it's not coming out...I just feel a lot of love for you right now, and what it takes to write this in your blog is actually a sign of intense strength, not weakness...not even a little bit.