Hello everyone, My name is Crystal...and I need some more opinions. The doctors just never tell me what I need to know. I have been having seizures for the last 6 years now....about 1 or 2 a year. I have had a few grand mal seizures and my last one lasted around 10 min. I have been on Dilantin for about a year now, 300 mg a day. When I arrived at the ER, they said that my level had dropped below 1. I take my meds...what would cause this? Then they put me on 400 mg a day and a week later, they said that my level was 27. Is this medicine just not right for me? I was on trileptal for 4 years and was still having seizures so I made the doctor put me on something different. I aslo get these feelings which I think may be auras, but i'm not sure. They are so hard to explain. But when i get them...I will have my first one about 30 minutes after waking up and will have sometimes 6 or more a day. After the feelings I feel normal and they don't last more than a minute. Also when i have the feelings, I will have them for about a week and then they are gone for a month or two and then the pattern continues. Anyone have any helpful information?
Welcome to the Coping With Epilepsy Forums
Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.
Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!
alivenwell
Veteran
- Messages
- 1,604
- Reaction score
- 0
- Points
- 156
Are the medications always brand name only? Or, are they always the exact same generic manufacturer? The fillers can cause adjustments in levels.
Auras, according to some people, are actual small seizures.
Keep a journal of all kinds of potential factors....generics, missed dosages, that time of the month, any illness, any stress out of the norm, any other medications that could conflict with the epilepsy medication, flashing lights, unusual sensations, and a sleep schedule log. There are SO many factors that affect epilepsy.
Auras, according to some people, are actual small seizures.
Keep a journal of all kinds of potential factors....generics, missed dosages, that time of the month, any illness, any stress out of the norm, any other medications that could conflict with the epilepsy medication, flashing lights, unusual sensations, and a sleep schedule log. There are SO many factors that affect epilepsy.
skillefer
New
- Messages
- 2,339
- Reaction score
- 0
- Points
- 0
Hmmm
:agree: with Alivenwell. Check and make sure your on the brand name and not the generic. And make sure that your journaling.
Also, has anything changed in the last year? Hormone shifts, higher stress levels, weight gain? etc. My neurologist when I was in college always told me that I had to keep a close eye on my weight (which wasn't hard, as I was on depakote.
I watched it go up and up without help from me. ) because the heavier I was, the more of the med I would have to take. What more encouragement did I need to start using the gym? Absolutely none.
:agree: with Alivenwell. Check and make sure your on the brand name and not the generic. And make sure that your journaling.
Also, has anything changed in the last year? Hormone shifts, higher stress levels, weight gain? etc. My neurologist when I was in college always told me that I had to keep a close eye on my weight (which wasn't hard, as I was on depakote.
I watched it go up and up without help from me. ) because the heavier I was, the more of the med I would have to take. What more encouragement did I need to start using the gym? Absolutely none. 
Rach_nc1984
New
- Messages
- 78
- Reaction score
- 0
- Points
- 0
I know where you are coming from in a way...I currently have a neurologist that I have been seeing that "discredits" the things I say--I remember telling him once about a seizure that I had that was somewhat different from my others and he said something to the effect of "Well you don't have that problem" Like I was telling him a lie because I just want my seizures to appear worse!! Jackass..So I will be seeing a new neuro soon. Look for a neurologist that can provide you with more answers to your questions...Even if you have to see 3 or 4 or 5 until you find the right one. Hope I helped some. :e:
Crystal
I was taking generic Lamictal 200mg as one of my meds. Well i was taking the brand before it, the state changed it, then my seizures started coming more often and i started to lose hair ( have thick hair so don`t mind}. So i did see Neuro and told her what med. it was and how state changed it to generic. Well neuro. changed it back to brand. So make sure your meds are not generic to start out with. It takes you body a while to get use to each new drug or change of amount of drug in you system. I am on 3 drugs at this time, but they just changed me from generic to brand so i got to get generic oout of system { in the mean while i just continule to lose hair}.
I was taking generic Lamictal 200mg as one of my meds. Well i was taking the brand before it, the state changed it, then my seizures started coming more often and i started to lose hair ( have thick hair so don`t mind}. So i did see Neuro and told her what med. it was and how state changed it to generic. Well neuro. changed it back to brand. So make sure your meds are not generic to start out with. It takes you body a while to get use to each new drug or change of amount of drug in you system. I am on 3 drugs at this time, but they just changed me from generic to brand so i got to get generic oout of system { in the mean while i just continule to lose hair}.
LuvMyTwins
New
- Messages
- 215
- Reaction score
- 0
- Points
- 0
Ahhh the fun of epilepsy....
E. is one of the most amazing illnesses as it's just not as predictable as I would like it. I've found that the best medicine is your instincts. A neurologist only knows you for a short period of time and all of their decisions are based on what you say. So, first and foremost, find a neurologist that will listen AND will look for answers beyond the good ole' pill (vitamins, neurofeedback, etc. help amazingly). It doesn't seem as though they are out there (take it from me, it took me 20 years to find one), but they are.
I agree with everyone else: Make sure you're not on generic and keep a journal. I've found that my largest issue is stress---it really messes with my nervous system causing all kinds of weird stuff to happen (I'm not even speaking about seizures--those are predictable). So, when you're in a period of stress, try meditation, prayer--anything to relax you.----LMT
E. is one of the most amazing illnesses as it's just not as predictable as I would like it. I've found that the best medicine is your instincts. A neurologist only knows you for a short period of time and all of their decisions are based on what you say. So, first and foremost, find a neurologist that will listen AND will look for answers beyond the good ole' pill (vitamins, neurofeedback, etc. help amazingly). It doesn't seem as though they are out there (take it from me, it took me 20 years to find one), but they are.
I agree with everyone else: Make sure you're not on generic and keep a journal. I've found that my largest issue is stress---it really messes with my nervous system causing all kinds of weird stuff to happen (I'm not even speaking about seizures--those are predictable). So, when you're in a period of stress, try meditation, prayer--anything to relax you.----LMT
- Messages
- 7,610
- Reaction score
- 951
- Points
- 278
Hi crystal, welcome to the forum. :hello:
A lot of things can affect the blood syrum level of Dilantin (or most AEDs). A few of them are:
A lot of things can affect the blood syrum level of Dilantin (or most AEDs). A few of them are:
- grapefruit
- excessive sweating
- dietary protein - dilantin/phenytoin binds to protein, so you need to eat sufficient quantities or the drug will just pass through the system
- menstrual cycle (see Phenytoin Levels in Catamenial Epilepsy for example)
- interactions with other drugs
- liver function
speber
CWE Muse / Playing With Angels
- Messages
- 1,329
- Reaction score
- 0
- Points
- 0
Welcome Crystal!.....
I am going to to say "I'm not a doctor, but you sound A LOT LIKE ME!".
What I go through I've come to call "the sparkies" because they kind of make me 'change channels' and it's like I'm getting a very small 'static-cling'-type of shock...never really coming to a full rest on one until a few minutes later. Don't get me wrong, I'm fully conscious and (so far) fully functional...just very aware that something 'weird' is happening. This is an 'aura'. Due to my meds, music therapy, and some stress-relieving life changes I've been seizure-free for a couple of years now...but I was having major Tonic Clonics when I did seize.
Peace,
Speber
:rock:
I am going to to say "I'm not a doctor, but you sound A LOT LIKE ME!".
What I go through I've come to call "the sparkies" because they kind of make me 'change channels' and it's like I'm getting a very small 'static-cling'-type of shock...never really coming to a full rest on one until a few minutes later. Don't get me wrong, I'm fully conscious and (so far) fully functional...just very aware that something 'weird' is happening. This is an 'aura'. Due to my meds, music therapy, and some stress-relieving life changes I've been seizure-free for a couple of years now...but I was having major Tonic Clonics when I did seize.
Peace,
Speber
:rock: