Ellie,

You hold much in your heart.
Thank you for letting us in.
Beautiful inside too.

It is a pleasure to know you.

Thanks,
kitt00

Just a small update. I'll be going to a new Epileptologist on the 25th of this month for 'poorly controlled seizures' so says the referral. I've heard nothing but good things about her, so as usual I have my hopes up (again, for the 6th time).

Due to my seizures 'spreading' and the major issue being they are coming from my parietal lobe. I am not going to get too excited for a 'fix' because surgery is basically out of the question for seizures of this type. However, if they can at least get the ball rolling on my frontal and R. temporal lobe sz's I'll take that as a good start and learn to try to copy with the pain associated with my parietal lobe.

I've (in all honesty) been in an emotional storm. I'm hoping she doesn't let me down.

Ellie,

You will do just fine at this Dr. She will have a fresh outlook on things. Also, she will be much informed. I finally got to an actual, "Epileptologist" Prior to that is was a nuro. You are on the right track. You don't need luck when you are smart, and that you are.

Stay well my friend.
Kitt00

I have a little bit of time before I clean myself up to get my VEEG results. Yes, I know it's been a month and I didn't get results. I had gotten an Epileptologist, she is the one who ordered the VEEG due to some recent episodes that had finally touched the last nerve with me. She works -a lot- she's in her office around 6 hours, and then spends several more hours in the Epilepsy Center where the VEEGs are done as well as the surgery patients, recovery, etc. She reads and does the VEEG transcripts as well, so I'm ok with waiting a month - she has a lot on her plate.

Anyway, my boost in Keppra (ugh) seems to have lessened the cycle-related seizures some. I still have them, but not as severe. The downside, is I am bordering a GM once a week. I may sound weird, but I personally prefer a GM over my other seizures since my others seem to be coming from my parietal lobe which brings pain. I have a high pain tolerance, but I have my limits - this pain exceeds those limits. At least for my GM I have auras most of the time and can find a safe spot until I finish, then I go to bed. I'm out cold to miss any pain (I don't bite much, normally get the sides but they are so tough they don't bug me much).

I've been given the unfortunate label that we all hate: "Uncontrolled Seizures". We all know what it means, and no-one likes it. Somewhere in those letters it represents a loss of independence, and I hate that feeling.

My Epi offered me anti-depressants when we first met, and I think she kind of looked at me the wrong way. I was in such a panic to talk fast (I'm used to having 10 minutes to say my lines and then my time is up) that I may have came off as a total spaz. Then I was working so hard (mentally) to do the tests well that I started crying because I couldn't remember the three words she told me to. I explained, "I'm not depressed, I am angry". I think being angry or frustrated is easily justified under those circumstances.

Anyway, on to the update of my 'stuff'.

I still have my GMs, sometimes once a month - sometimes 2-4 times. It's random.

My catamenial seizures (of sorts) are associated somehow with my parietal lobe as the seizures are the same. I assume my cycle triggers these now instead of GM's.

The seizures from my parietal lobe give off many various sensations, I have a lot of numbness in random spots (my face, hands, feet, butt, breasts, etc), I also have tingling (random spots, also) and then electrical shocks (damn those).

Amazing as it sounds, I have been shocked before when I was trying to rig a light for a squirrel cage, it came undone and I was holding the two live wires. The actual shocking sensation is very similar to being shocked (I know, weird!), however, the pain is worse. It feels like nerve pain, if anyone has sciatica, they will know that. This is like having the worst sciatica day and the pain is anywhere in your body, your face, feet, etc. Whatever it is, I hate it.

I've been having aching feet, but that could be from various things.

Right now, my most random thing is visible muscle twitches and cramps. I will watch my face, hands, arms, legs, stomach, etc. twitch. Like a moth is fluttering under my skin. The area in question is typically the size of a half dollar up to the size of a playing card. This can last from 5 minutes up to an hour. It doesn't hurt, it's just weird and kind of gross.

The cramps are the same, I can see the muscle bouncing and then BAM it turns into a lump the size of a golfball. Oh boy, does it hurt. This happened just below my rib cage in the center (between my breasts but lower than ribs) and it looked so gross and felt like hell. It's like a charlie horse cramp, but in a weird place. Something similar happened to my hands, they warped into this weird position. I am amazed my fingers didn't break due to the positions they were in.

Hopefully today she has something good to say. I miss working, and I miss staying awake all day. I've been having so many frequent auras for my GMs (but they don't turn into GM's) that I have been much more exhausted than normal.

I had a good couple of weeks, and got into this mindset nothing was wrong with me. Like a moron, I stopped my pills. Don't do that, by the way. It was a stupid decision I made, and I won't do it again.

I'm going to try a bit of a lifestyle change after the new year in regards to a more epilepsy friendly exercise. A lot of activity is a trigger for me, so in a way - I want to test out building up my tolerance in a way. Starting very very small and then working up slowly. I'm hopeful this will help me gain weight, as well.

My doctors wont let me do anything until my blood pressure is under control. They said I ran dangerously low blood pressure for an entire week and looking back at my charts, those seem to be the same. I know mine is low, always have - but I don't know much about it to even start guessing why it's that way.

Anyway, I'll update this again once I hear something.

It seems my VEEG didn't yield much brain information but brought a potential heart problem to their attention. Now I have to go on the 13th for some testing along with a tilt table eeg. She mentioned some possible adrenal gland tumor. She's sending me to this cardiologist for dysautonomic syncope and said something about neuropathy something or another.

I had a "big word overload".

Not much else to say, she's going to change my meds again but is waiting until I have these other tests done first. I'm going to go Google everything else now.

Thanks for being a survivor. You are an inspriation. Your story made my day.
Someday, your son will be very proud of his mom.

Hi Ellie,

You are a great writer and take my word I can relate to a lot of what you have been through. I started having sz. when I was 10 yrs. old in the beginning it was just migraine headaches and then that led into absence sz. for me when I was in the 6th grade. My neuro at the time had me taking zarontin, tegretol, mysoline, dilantin, and phenobarbital all at the same time because they couldn't control my sz. I was half asleep for most of the day because they had me taking 106 pills a week. By the age of 12 the complex partial sz. began and I would see colors flashing back and forth in my eyes, hear wierd sounds, or sometimes just hear one word repeated over and over again. I was having over 300 sz. a yr. and my neuro found out that I had a scar on the right temporal lobe that was triggering my sz. and when I went through my monthly cycle with the hormones changing that's when the sz. would really fire up one right after another.
Years went by and I finally looked into having brain surgery done. I had to a video e.e.g. done but they had to do surgery and put the electrodes directly on my brain. My neurosurgeon drilled 7 holes in my skull 4 on the right and 3 on the left and they put the electrodes directly on my brain this is when they were able to find the scar tissue that was triggering sz. along with finding out that anything with nutra sweet (aspartame) was causing me to have sz. after sz. Later on on had ultra sound brain surgery and my surgeon removed 75% of the right temporal lobe and all of my right hippocampus this helped reduce my sz. greatly to the point where I went as low as 68 sz. in one yr. compared to 300 before the surgery. I've learned taking vitamin B12 once a day helps reduce my sz. along with putting a cold washcloth on my face and neck 3 times a day or more helps calm the neurons down in the brain and stops or reduces sz. for people I was in a medical study about this last yr. and they found each time I had any sz. my body temp. was higher even before the sz. so they told me to put a cold washcloth on my face and I was amazed to see that it helped reduce my sz. even more. When it comes to having sz. during your monthly cycle start eating peanuts or almonds because they have progesterone in them and progesterone helps calm the nerves down. What's happening is when a woman goes through her cycle the estrogen level increases which causes more excitment in the brain and the progesterone level decreases and there's less calming of the nerves and this is what triggers sz. for some women. They have also found out that keppra can increase sz. for some people I know keppra caused me to have drop attacks and myoclonic sz. which I never had in my life until I went on that. Also neurontin can be dangerous for some people the last I knew the drug co. making neurontin had $240 million in lawsuits because the drug was causing people to start having sz. that never had them before. I know the drug messed me up terribly.
Just keep your chin up and have faith because there's a reason why all of you have gone through the epilepsy and all that goes with it. I know it's made me stronger in life. Here's wishing You Well and May God Bless You!

Sue

Ellie,

Your story is an inspiration. And you are truly a beautiful person inside and out. i hope that now things have gotten better for you since this post by you was in 2006.

i have some things in common, i have trigeminal neuralgia on the right side of my face and have nueropathy so I so know what those electric shocks feel like. I have FMS too and have had electric shocks all over my body for hours where i was curled up in a ball from the pain.

Porkette is right about B12 helping for this type of thing, although I didn't realize it helped with seizures but it makes sense. I take 5000mcg, well; just looked at the spray I use for it and it is 1.2mgs. i don't think that is as much as I was taking. anyway, using a spray from or a sublingual form where it disolves under your tongue is the best way to take this vitamin for most of it to actually get into you. If you take a pill that you swallow not as much is being used by the body and gets peed out if you will. this has helped my restless legs syndrom and my trigeminal neuralgia as well as the neuropathy. I am also on neurontin which helps with all of the nerve pain too.

Porkette you mentioned a big lawsuit by neurontin users could you tell me a little more about that?

thanks and stay strong Ellie!

Sara