Zim

Does anyone else here wish they could club doctors with bats?

So, I've been on Tegretol for about 3 years now? Something like that. The entire last year I have not had insurance, and trying to get any help- let alone my precious prescription- has been worse than trying to eat my own head. (Not that I would, although during siezure times I sure wish I could just to make it stop!) I realize the body builds a tolerance to the medication (damn body) and I am currenly up to 800mg a day, and still having seizures once a month. Considering I only weigh 115, this seems to be a lot, so upping the dosage would probably be out of the question. (Then again, I'm not an MD, what do I know, right?) Anyway, I recently called our state Epilepsy Foundation and was given a WONDERFUL information packet that explained more than any doctor ever has. I was told some people never quite become epilepsy-free, and that I may just be one of these lucky few. Great.

My questions are these:

1. Does anyone here have catamenial epilepsy? Can a hysterectomy resolve the seizure activity all-together, or is this just wishful thinking?

2. Can I receive disability for epilepsy? I'm sure I can, but does anyone think I will be approved for 1 day of activity every month? If I apply will they take away my driver's liscence right away?

Any and all help would be greatly appreciated. Hope everyone is feeling well!

(x-posted to epileptics)
  • Current Mood
    thoughtful thoughtful
lupin

Insomnia?

I was just wondering if anyone else who is on medication for seizures also suffers from insomnia. I've always had a difficult time sleeping, but since I've been on medication, it has gotten much worse. For example, I go to bed at around midnight, but cannot fall asleep until two. When I do fall asleep, I wake up an hour later, take another half hour to fall back asleep, sleep for an hour and the cycle repeats itself until I wake up at around 6:30 AM the next morning.

I was under the impression that seizure medication was supposed to cause drowsiness, not insomnia.

Does anyone else suffer from insomnia also? If so, what do you do for it? Any help or insight would be appreciated.

Thanks!

Cross posted to seizuredisorder and epileptics.
  • Current Music
    classical mix
Zim

(no subject)

I am currently taking 800mg daily of Tegretol for temporal lobe seizures. They used to come every month, right with my menstrual cycle. Then came the medication, and the seizures ceased.That is, until recently.The last 3 months I have had 1 day at the beginning of each month where not even the medication seems to be helping. The seizures are just as bad as they used to be, although some of the side symptoms (the metallic taste in my mouth, etc.) seem to be lessened.I am afraid. Does this mean I am building up a tolerance to my medication? Does this mean I need a NEW medication? Does this mean the days will keep building up as the months pass, and before I know it I'll be back in bed for a week?Also, I currently have no insurance. (Or money, for that matter.) Does anyone know where to go for help with these matters?

Zim

LJ Ate My First Draft, So This Is Quick And To The Point

I currently take 800mg of Tegretol, and have been seizure free aside from a random episode or two that I blame on my own missed doses of medication.
However, I have been religiously taking meds and found myself day before yesterday stuck in bed having seizures all day. (I had over 20!)
Anyone else have random epsiodes out of nowhere like this? Is this normal? Any suggestions as to what may have caused this, as well as how to prevent it from happening again?
Llond ceg

Anyone out there taking Keppra?

I'll try to keep this brief -- hah.

I'm a recent diagnosis for TLE -- have had "things" since I was about 7 or 8, and have all the attendant oddities as well: extreme language and mathematical ability, rotten memory, emotional lability, synaesthesia, extremely good visual data modeling ability, left-handedness with a hooked hand, and occasional odd scents. I'm 40 at the moment.

Spells involve the standard: hyperreality, overwhelming deja vu, waking dreamlike state, occasional blackouts.

Since beginning to take toprol (a beta blocker) for Marfan Syndrome, I haven't had any of these serious, full-on spells but do have some occasional trippiness and what I can only call feelings of depersonalization. It's been a VERY long time, a few years, since I've had a full-on spell.

I have just made appointments for my MRI and a sleep-deprived EEG, but the neurologist has already put me on Keppra, and I'm not at all fond of the idea of going on a medication when I haven't had a spell for an age, and when I don't feel as if I have enough information yet to feel justified in taking another medication. The doctor told me that if I do have another spell, he's required by law to inform the state of California and the DMV, which could cause me to lose my job as I work 35 miles away from where I live and must drive two snarly freeways over an hour each way to get there.

Again though, I've been spell-free for years and I don't care to start sucking down some annoying new thing that may make me feel freaky, sleepy, or otherwise screwed up.

Is there anyone else out there who is currently taking Keppra? What have your experiences been with it so far? If you felt drowsy or easily irked while you were on it, how long did it take before it started to level off and go away, or did it? Any other advice about this?
Zim

Recent Activity

Missed a few doses of my Tegretol about a week or so ago, and yesterday was a complete mess! I had had a bit to drink the night before (4 shots of brandy to be exact) and thought upon waking that perhaps I was still drunk. It was an odd thought, considering more than 9 hours had passes, but what else are you going to think? I tried walking to the bathroom and could not walk straight. Sitting on the john, it seemed as though I myself, and not the room, were spinning. I made it back to the room the same way i had made it out, and went back to sleep. I woke up about 2 hours later feeling incredibly nauseous. *ugh* I hate that feeling more than anything in the world! I brought a trash bag into the room with me and finally vomited after some time of moaning to myself. It was clear, as though all of the soda I had consumed the night before had already digested. I again tried to sleep, waking up after another hour or so... and then the seizure hit me. I stayed in bed most of the day, having seizures appx. every hour or two. My entire body was heavy, my head felt like shit, and walking still took a bit of effort. My boyfriend said my skin was very pale, and my eyes were repeatedly dilating, each one independently from the other. (i.e. one would be big, and the other small)  By the end of the evening my appetite began to return, and the "air in my head" sensation was almost gone. I again returned to bed. Today I feel a bit better. My stomach feels heavy, as though I had just eaten a tub of lard, but not too much else feels out of sync. I am so afraid of having a major seizure, as the dogs have not left my side since I got out of bed. (My friend's dog woke me up by clawing at my door, which she NEVER does) I need to go to the store and don't think I should.

Any thoughts on the alcohol/seizure connection? Is there any at all? I used to drink far more than this NIGHTLY and have stopped for some time, although I did have a few shots of brandy the last few nights, meaning that was not my first night "off the wagon." The dizziness? Was that my TLE acting up, or remnants of the booze? Anyone had any cases similar to this? (cross posted in my own journal.)
Zim

A Happy Introduction (I AM NOT ALONE!!)

Hello, everyone. I am 26, recently diagnosed as having Temporal Lobe Epilepsy just over the last year and 1/2. I am so excited to have found this community!!
My seizures began (at least from what I strongly remember) in '99, at a Penn and Teller show, of all things. I recall getting very sleepy during the show, and thought I would go to sleep. The next thing I knew my ex-husband was waking me up, asking me to put my glasses back on. (I had sprung up, he says, threw them off my face, and went limp.) We decided to leave immediately, and I had great difficulty walking, needing a human crutch, as well as speaking, for my tongue had gone numb. I thought it was due to the fact that I had not eaten all day, and didn't think too much more about it.
As the years passed, strange things began to happen. Out of the blue, I would be feeling fine, and suddenly have short spells where I was aware of my surroundings, but could not move or speak. They usually passed quickly, and I would feel fine once they were done, so I shrugged them off as vitamin deficiencies or hot flashes or whatever. I didn't even tell anyone until I noticed a pattern to their arrival.
Before I knew it, every month I was having one day of being, "sick," as I had labeled it. Then, as time passed, it became two days, then three... all usually centering around the time of my period. The spells were SERIOUSLY beginning to affect my work and social life (most thought I was on drugs) but the different doctors I had seen could not find anything wrong with me, or would simply raise their eyebrows at my explanations of how I was feeling. 


It wasn't until I was literally laid up for a week at a time that I realized I could not just "live" with this "sickness" any longer. Something was seriously wrong, and I had to get it checked out. Again to the doctors, again with the eyebrows. Then, I had a grand mal seizure at work. One minute I was in the bathroom, leaning over the sink, cursing my messed-up brain, then next I awoke in an ambulance on a stretcher, en route to the local ER.
Long story short, and many many tests later, I got a diagnosis, and a prescription for Tegretol. I have been doing fairly well on it, although recently it seems that I have been having more TL seizures than I should. I am uncertain if it is my dosage (which I have been trying my damndest to get on a regular schedule) or if it is time to get on a new RX. 
I had surgery on my inner ear (I had a hole in some old scar tissue) thinking it would calm things down. It didn't. I got my tubes tied, and my uterus cauterized, thinking it would calm things down. It didn't. I recently had my last 2 wisdom teeth pulled, thinking- maybe- it would cut the seizures back. They seem to have gotten worse.
I am personally so sick of dealing with this that part of me does not even care any more. Half of me wants to work and be normal, and the other half is so sick of worrying about Dr. payments and money for RX's that I'm considering filing for social security and becoming a burden to the system.
I just don't know what else to do, and trying to get assistance of any kind is like pulling teeth.
Any suggestions? Any personal tales that might help? Anything HERBAL that anyone knows of? (doubt it)
Thanks again for having this forum here. I would have done a cartwheel had I known how once I saw it!