What May Happen If I Stop Taking My Medication(s)?

Greetings!

Not only do I think that my diagnosis fit the cookie-cutter type, I think I am taking medication that I do not need, as it is not working, and I do not believe I have a) a seizure disorder and b) epilepsy.

Why? Because it is more complex, to the point I have began to question my own sanity. Something is wrong with me, and when I try to look up symptoms, I end up seeing medication side effects, darn google! It typically never fails me, until I type in what happens to me in the search box.

I will, however, admit that I have had seizures; but I look at them as if my body is expressing something is wrong.

Below is my last eeg report (i get lots!). I am using upper case since they did, I don't normally type that way. I feel like I am 'yelling' at people when I do. ;)

procedure in detail: this is a sleep deprived outpatient eeg with the electrodes placed according to the international 10-20 system. During wakefulness there is a well developed, symmetric, and reactive 25 millivolts posterior dominant 9.5 hertz rythym. Interrupting this background are occasional right central or right temporal sharp waves.

Stage 2 sleep had normal sleep architecture, there were episodes suspicious for rem sleep, interrupting the sleep eeg were right central and/or temporal sharp waves or spikes. Activating procedure produced no abnormal activity.

Impression: abnormal awake and sleep eeg due to right central temporal epileptiform discharges, which can be correlated with the risk for partial onset seizures. The patient may also have a decreased rem sleep latency. Please correlate clinically.

(excuse any typos)

my last mri and mra were negative.

My last seizure (my boyfriend freaked out and called 911; I didn't tell him about these - i'll explain why, below). My glucose was 90, and they did 3 tests on my bp. Here is what they wrote down.

Resp: 18
pulse: 74
pulse: 76
pulse: 76
b/p: 70/40
b/p: 94/58
b/p: 92/60

his writing was bad, so who knows if I got the write numbers up there.

On the checklist, it said I was cool, pale and moist (the moist part was funny, but I have no clue what that means.)

my chief complaint was dizzyness and ringing in ears and they also added a + sign and incontinent to urine. (that was fun :()

i dont know what a glasgow is, but these are my scores:

eyes: 4
motor: 5
verbal: 5
total: 14

that's about it.

My history:

birth: 6 weeks premature
diagnosis at discharge: gastro-esophageal reflux

2 weeks: projectile reflux after feeding; asphyxiated - approx. 5 min wait for paramedics.

Cpr x 1 onsite
cpr x 2 in squad
cpr x 1 at hospital

(luckily, I was able to scare the paramedic to the point he was able to give me this information - since that day, he has talked to my mom once a week for the past 29 years).

Diagnosis: esophageal sphincter not developed
*i spent the rest of my time until age 10 mos in a reclined position; they were not allowed to lay me down or i'd stop breathing. Symptoms ended at age 10mos.

3mos: day 1: fever ~105; sent home with dx of ear infection
day 2: fever still ~105; bulging fontanel, diagnosis x 2: aseptic meningitis, and anemia due to meningitis.

3 years: I somehow ate (chewed up) a half of a bottle of bayer asprin that my brother fed to me. Number eaten, approx 20 - had charcoal and send home with no complications (short of them picking on my mother)

8 years: brother hit me with a 2 x 4, had ~5 stitches. Had no complications.

Below are approx ages. My memory isn't as great as my mothers, so I had to ask friends and go by feel. I renamed my 'seizures' to 'episodes' - I think it sounds nicer, personally.

18 years: first episode, loss of bm. I really thought this guy slipped something in my drink, so I didn't mention it to anyone.

19 years: second episode: was at a radio station, the staff called my mother and told her I had convulsions - I did not lose any control of my number one's or two's. I did, however, fracture my coccyx and now have sciatica thanks to it. -- I thought it was because I didn't eat enough that day, and I was hungry.

20 years: third episode. Was at a store, they called 911. I hit my face on the checkout stand. - I was pregnant and my doctor said passing out was normal.

22 years: forth episode: was alone, and sitting down - so I didn't hurt myself this round!

28: symptoms with no episode.

28: final episode and it kicked my butt.

28-29 - I have symptoms once a week now.

This is my episode in detail. They only differ if I fall. They can happen when I am sitting, standing, full or hungry, sleeping or awake. I cannot tell what causes them. I give them phases.

Phase one: all episodes begin with nausea, every single time. The nausea seems to increase over time, and I have around 10 minutes before I will pass out. After around 5 minutes of the nausea, I am then dizzy and have a moderate loss of coordination and a very unstable gait (if standing).

I always feel like I need to instantly sit on the floor, then again - this may be a reflex since the first two times I hurt myself.

Phase two: upon hitting the 10 minute mark I am so dizzy and nauseous that my clear thoughts start to vanish. I become confused, and I sway like a drunk person. This is right before I black out.

Phase three: right before I pass out I hear a ringing/buzzing in my ears, everything goes black, I can't speak or move and all I hear is this sound - and it is so loud. Only once was I 'with it' enough to try to talk, but it came out like a hmmmmm - it was like trying to talk with your mouth shut. I couldn't speak at all.

Phase four: I never know how long I am out, from witnesses - it is between 3 minutes and 10 minutes. I normally scare people so bad they don't think to count. :(

phase five: the aftermath. I am normally confused, and very upset (crying). I am shaking very bad, my whole body shakes afterwards like someone just pulled me from an icy lake. I am cold, but sweaty - very sweaty. It typically feels like someone kicked me in the back of my head, and the ringing in my ears is so extreme, it makes me cry.

I've lost control of my bladder 3 times during an episode, and my bowels only once (thank god). In all honesty, I always had a reason for them, and they were so random they fit whatever situation it was. All until this recent one (age 28: in april '06).

I was laying down, half asleep watching a movie and I felt the nausea. I had this creepy deja vu feeling and I made a dash for the bathroom, I knew what it was. I was so unhappy knowing it was coming, too. I know it seems shallow, but you never want your other half to see you in your worst, or even worse - that you peed on yourself and you're screaming with your ears covered and he doesn't know why.

I thought it was low blood sugar, I am a small gal. But on several episodes, I had eaten fine. Even before my last, I started this boost plus stuff to gain a few pounds (it's rare in california women want to gain weight). I've been little since birth, I simply have to eat like a cow to gain weight. I am talking 6 full meals a day plus snacks, and my best was gaining 2lbs - and the next week was my 'episode' and that week, I lost 8 pounds in 4 days. I do not know how.

The er doctor for my recent one told me I had food poisoning or vasal vagal reaction (or something that sounds like that). When my pcp called him and asked him to explain my loss of bladder control, he said he must have not seen it on the squad report dohickey.

I asked him 4 times if I could change my pants, I don't know how he forgot.

Anyway, after all previous episodes, I bounced back fine. This one, I did not. I slept for over 24 hours, I kid you not. My body was so tired. For 7 years I have woken up at 5:30am every single day and go to bed at 9:30pm. Now, I go to bed at 8:00pm and wake up at 10:00am and I don't feel like I had any sleep. I am still tired.

My body frequently feels like I was in a wrestling match the night before. My whole body aches, and I have these oddly placed muscle knots all over my back. They are evil little knots of rage that hide under my shoulder blades that are a pain to reach.

My skin twitches, and it is gross. It is so random, and lasts from 5 seconds to 5 minutes. It looks like a moth is under my skin, flapping - and it's just, eww. It does this on my face too, and it looks - ugh, it is just something you don't want to see your face do.

My eyeballs went weird. I now (at night) see a glare off of every light. My right eye vision seems much weaker, and I have a hard time reading certain colors of text or with a certain background (like white text on black background, it looks like it moves).

When I lay down I feel like I am drunk, I don't drink, but I have. I got drunk one time when I was 23, I haven't drank since then either! But I remember that feeling. I lay down and feel my body moving...But it's not moving. It is like being on a boat, and it makes me feel a bit of nausea.

My neck is stiff, it is like someone is always pinching it. It also gets these knots, too.

I am now mean. I have epic moodswings which normally only happen when something loud goes off. I feel so horrible for my gardeners. I was trying to tell him to shut off his weed-whacker but he doesn't speak english and I was sooo angry. Thank god he came back.

I get headaches around 15-20 times per day. Sometimes they don't leave so I take relpax, the cost of this medication alone could trigger a headache. My neurologist wanted to stick botox in my face, temples, etc. But I cannot do that. I know it is purified toxin, but toxin nonetheless.

*stretches hands*

my balance is weird, I tend to favor my right side so much I run into everything with it. I trip over my own feet and I drop a lot of stuff.

My short term memory and I have cut ties. Sometimes it is funny, but the entertainment value of this is fading, I get up to do something, I stand there - forget. I do this all day. I will be talking and then stop, and forget. It is like writing on a chalkboard and someone comes up and erases it all. Whatever this is, it stinks.

I am going to get fired, if this continues. I don't even know if I am supposed to be working, but i'd rather not be than get fired. I was the top person at work, the go-to-gal. Now I am the gal with a headache and the one who forgets everything. The one who can't read the text on our webpage. :( I have worked since I was 16, I am 29 now - and I doubt my ability to do what I have been.

Oh, get this. My dog bites me when I am sick. Have you heard of such a thing? She is a 6lb maltese, and whenever I have symptoms but no episode, I lay down. And then she comes up and bites me. I don't know what to make of this, but she bit me last night and maybe I am holding a grudge.

Oh, back to the 'drunk' thing. Sometimes, even sitting up - it feels like my head is moving when it's not. Like left and right as if I am saying "no" but it really isn't moving.

I also hear everything, like a super hero. If it's quiet, I can hear myself blink - but it annoys me, and it's aggitating. The fan that used to comfort me now has a noise so bad that it makes me want to cry. My boyfriends snore drives me mad, I sleep on the couch 4 out of 7 days because of it.

These 'symptoms' have all been slipping in since my last episode in april, it is now august and I have more issues than I can count. I went from being normal, to being a total gimp. I never had headache problem, and sure, I had some back pain - but I get si joint injections which fixes that right up for lots of months.

Now, the pain seems to haunt my spine - it is a gross feeling. Like it is in my neck, it feels misplaced and like it's grinding.

I have these spots on my head that hurt to touch.

I just generally do not feel well, but I don't think I have epilepsy, I think something else is doing this.

Oh! I have a wicked rash type thing now, too. It covers my whole back, and my skin kind of falls off. It is like dry skin, except it is not dry - its oily. Weird, I know. But when it falls off, I lose my pigmentation. :(

i went from being the pretty girl, to looking like a freak.

I hope I got this all down, I normally post on the hastypasty but it's been down. :(

anyway, I really have no legit diagnosis. I just want a neurologist who is nice, and wants to fix me. I just got a huge house and if they keep sending me home from work, i'm going to lose it.

I feel like I am 25% of what I used to be, and the number only goes lower.

Does this sound like something else? I am sick of taking these pills because I don't think it is what it is.

Oh, I was taking trileptal (8? A day), but my stomach hurt, so I now take 1000mg of keppra per day. I have butalbital and relpax for headaches. The butal stuff doesn't work, relpax only does now and then.

Oh, one more thing.

Humor me if you will, but in that large gap between episodes, it's when I was in college. I worked 3rd shift and went to school, I had a stellar coffee addiction. I am talking about 4 pots a day, maybe more. Isn't it weird, that I didn't have an episode during the time of my coffee addiction?! Now, I did have symptoms (nausea, dizziness, etc.) - but never passed out.

When I had this recent one, I just swapped to decaf. However, I did change back and didn't feel any better. :(

my doctor laughed at me and said sometimes people have 1 seizure, some have 100. And that my coffee had nothing to do with it.

*sigh*

please help me. I just want to be me again.

Also, forgive my babbling. I love writing and I also have a very dry sense of humor. I make lots of jokes about myself, and try to find the funny in everything. Laughing is great!

Best regards,

dubbie!