Diary of an Epileptic

[Rae1889]

Yeah 3 weeks seizure free down, and hopefully never again.

[Meetz1064]

Yeah for you!!!

[Rae1889]

Well seizure free ended last night/this morning. I think I jinxed it.
That is such a disappointment. I feel like crying. only a few days until I see my neurologist so I really wanted him to know that I was doing okay. That is the crappiest feeling ever. I think I got my hopes up too much, cuz it now a huge, weighted crush.

WHAAAAAA!!!!

[occb]

*Supermassive hug*

It's always disappointing when something doesn't go as you'd hoped. Poop.

[Rae1889]

Yup, and i also has a few scratches and scraps. I went face first into my mirror while trying to get ready for bed. wipe off my make-up and brush my hair. now I have a small punture wound on the top of my head, that bled like crazy, might need a stitch or two. I rubbed orajel in it to numb it and that crusted so its holding off the blood for now

Come to think of it, i have alot of my seizures while using a mirror. I wonder if this is cuz it bends light in funny ways and my photosentivness picks up on that. slightly? but it never happened before. even before my first grand mal, mirrors never bugged me

[occb]

It could be the mirror, or the lighting in the bathroom, or a chnge in lighting in the bathroom. Or perhaps lights reflecting from the apartment into the bathroom mirror? I dunno -- you'd have to try a bunch of different scenarios to see what exactly is triggering you. What fun.

[Nakamova]

I'm so sorry Rae, I know it's tough to "relapse". The two times I've tried going off meds, the seizures that eventually resulted were sooooooooo disappointing. But hang in there -- the fact that you made it for so long is a great sign, and makes me think that you've been doing something right to raise your seizure threshold during that time.

I don't know if this is the case for you, but I've found that brushing my hair has been a trigger. I think that raising both hands above my head is a bit like standing up too fast -- the blood doesn't make it up to my brain fast enough, and it complains by seizing. In a similar instance I had a seizure when I put a friend's kid up on my shoulders during a parade. Having my hands up again, along with pressure on the neck cutting off blood flow seemed to be the trigger.

[Rae1889]

Hmm. that could be it. putting in contacts usually makes me dizzy and i wanna faint. but I thought that was just cuz putting something in my eye and touching it was super gross.
I dont know why I put myself through that most mornings. I have 6 pairs of glasses and i could be wearing those

[Nakamova]

I actually got laser eye surgery after my epilepsy diagnosis because the med I was on at the time (Dilantin) made my eyes dry, which bothered my contacts. Plus I wanted to be able to see and swim at the same time. I had perfect vision (20-15) post-surgery, but ironically, my current med (Lamictal) makes my vision blurry

[occb]

Isn't that just how it goes. You win some, you lose some. Yeesh!

[Rae1889]

Is there such a word?

I ask because last night I had another "I HATE E!" nights. Complete with crying, snotting, yelling, crying, and the start of it...seizing.

I had another tonic clonic last night. I'm not in the mood to be here at work today, but I have a neurologist appointment at 2:15pm and its easier to bus it from here and back, then from home and back. plus if i'm lucky i'll get a ride.

The day started off okay yesterday. I was still trying to shake the groggy and crap feeling from the seizure I had thursday night. I felt pretty good. no auras and then WHAM. another tonic clonic. no warnign this time.

I was crying all night. Hating myself. Hating E. Hating my neurologist. Hating doctors. Hating the world. I had a melt down. The whole time I kept yelling. "I know its not a huge deal. I can get through it." but I felt like I couldnt. I felt like, and still feel like, I have lost ME. I am a shell. A shell that seizes.

I'm not in there all that much. its become cold and broken and it doesnt travel well. I have a neurologist appointemnt today and I have alot to tell him. I want to do more. I WANT the brand name. I am tired of this. I want a cause, I want him to verify my diagnosis. I want him to explain why he feels its juvenile myoclonic epilepsy and mnot something else. I WANT him to take me seriously.

argh...I'll update later.

[Nakamova]

I'm so sorry Rae. Definitely write down all the stuff you want to ask the neurologist, and take notes on his answers if you can.

Many, many hugs to you.

[occb]

*Supermassive Hug* I'm sorry this is all so difficult Rae. It's so INFURIATING when they don't listen, don't take a proper history, and don't take you seriously, and then assume they know what ails you. Are there no epileptologists, or epilepsy clinics in Winnipeg that he could refer you to?

I hope your visit goes better today. I'm thinking of you.

[Rae1889]

not that I know of

I also puked and got super woozt during my neurologist appointment. they took another blood test to check my serum levels. the last blood test. He wanted to get another one done because my last blood test showed that my levels of Lamotrigine were higher than my dosage was. and the one before that said that my levels were low for my dose. both time I had taken my pills properly for just over a week. So this time he wanted to check it again. the blood lady kept saying "oops" and "your vein keeps rolling"

That made me sick and I accidently puked on her shoes.

SO while I was ebing told my levels are sporadic, I asked about Brand name, and he kept saying its more expensive. and I said that's fine my insurance covers it. and then he kept saying that there was no difference between my Mylan-Lamotrigine and my Ratio-Lamotrigine. even though there are clear differences in my control and side effects. He just wouldnt budge. But he put me into bigger pills. the 150mg size plus adding a 25mg pill to it. so i'm at 175mg AM and 175mg PM. Thankfully no more small pills (well not as many) But I'm going to ask my pharmacist if it matters whether he (the pharmacy) can give me the brand name without my doc specifying. seeing as it is the same substance just made the same.

I feel pukey. and slow. I got myself a decaf coffee with lots of sugar to bing myself back up.

He also was reluctant to write a better letter for my work, seeing as the first one he wrote just said I was his regular patient. He said something about not legally being allowed to tell them things. So i just made him write that experiancing seizures can cause severe fatigue physically and mentally and emotionally and it is recommended that rest is taken as needed after each grand mal. My work is so lucky I chose to come in most days.

[occb]

I don't like your doctor. What a boob. I'm sorry you still feel tired and yucky. It's just got to suck having days like that. Self-care is definitely called for today.

As far as I know, the doc doesn't have to specify brand name or not, the choice is yours. You just have to make sure the pharmacy has brand name in stock, so a few days before you go refill your prescription go talk to them, and ask them to order it in if they don't have it in stock. That's what we do, and the only thing I've heard about it is the pharmacist whining about that it's no different than generic, and if we're willing to pay the extra cost. Yes! Otherwise I wouldn't be ordering it! Doofs.

Scott has a needle story -- he got an epidural for his back, and he warned the doc that he doesn't like being touched, let alone getting needles, and that he was suffering from severe anxiety at the time. He said just please don't walk in front of me and show me the needle. So what does the the doc do? He walks in front of him and shows him the needle. Scott technicolour yawned all over him. He says he thinks part of him aimed at the doc intentionally You're not alone. You were very polite just soiling her shoes.

[Nakamova]

Most neuros want their patients to take the brand not the generic. It's so weird that your doc is the opposite, especially considering that your insurance will cover it. Another possibility for you might be the XR (extended) version of the Lamictal, which is supposed to help some people by making the dose more consistent. Unfortunately, it sounds like getting your neurologist to listen is a stressfest in and of itself. Maybe there's a way to find a more responsive doc? I hope you feel better soon.

[epileric]

These sites might help.

http://www.canpages.ca/business/MB/w...06-6236T0.html

http://www.ratemds.com/social/

[occb]

I love ratemds.com -- Scott's GP has the worst rating I've ever seen for a doc on there, and probably 100 or so posts explaining why. They're all like a page out of his experiences. We'll be changing docs as soon as we're able. After that, Scott will post his own rating for him.

[roo]

Sorry to hear you're having a real crappy time Rae
(((Hugs)))
Hope things improve for you soon

[Rae1889]

well good news. I talked to my pharmacist like occb said (thanks!) and guess what. because the neurologist gave the chemical name, its up to me if I want the name brand or not. So I opted to order it this time! I sure hope this makes it better. The pharmacist also said that they can order in the other generics if I prefer one to the other. So I can always have Mylan, or always have Ratio, or whatever other ones are out there. so at least I can stay on the same one with out needing to switch back and forth. which would be nice. lets see how this goes.