i had a similar situation after my avm was removed last october. it was from the drugs. i was on keppra and the dosage had to keep getting raised as well and then i'd have more seizures. i was exhausted constantly and had to keep myself very rested or i'd keep having them. i felt the warning signs for this was muscle twitches in my face.
i recently came off the keppra and the seizures have stopped.
i hope that helps.

i have a friend that is taking me to the neuro clinic tommorrow...tired of calling and being put off....I will discuss the medication issues with them and wont leave until i get some answers. I know i cant be off the meds entirely ...have done that once, and did not have any grand mals for a year....then bam....eight that landed me in the hospital for a few days....I wonder now if i should have even had the surgery for the avm....thanks everyone who has responded....its awful feeling like a child again....

mama, it is great you have a friend who is taking you in. YOu may get them to check on your level of Dilantin. At one time I was on Dilantin and my blood level would get high ND I would feel kinda loppy, as you said, about 30 minutes after taking the medicine. Please keep us informed on your condition.

Darlene

All Anti-Epileptic Drugs (AEDS) carry side effects and there
are really no "safe AEDS" out there; however, some
AEDS require blood level monitoring, and Dilantin (generic
name: Phenytoin) is one of them.

However, I do wish to post this that I have posted in
another forum where I'm a moderator at:

Quote:

ALL anti-epileptic drugs OUT THERE COMES WITH SIDE EFFECTS! * Some individuals may not experience any side effects * Some individuals may experience a minimal side effects at first but will go away after a period of time (which they call it a 'honeymoon phase') during the titration of the medication. * Some individuals may experience a mild side effects that are tolerable but can stay with the medication(s). (It's either take the medication(s) or risk the seizure(s) which in turn 'may' endanger you and put you at a risk for brain damage) * Some individuals may not experience any side effects at all for a period of time, then develop a tolerance (or resistance) - then side effects begins to manifest; and if ever this becomes the case, then one must consult with their Epileptologist or Neurologist; for it may be that the dosage may need to be decreased or it may be that seizures are 'changing' and you need to be re-evaluated again. It may also mean it might be a time to change your anti-epileptic drug or anti-epileptic drugs or adjust them accordingly or even having to have a full Neurological Work-Up * Some individuals develop side effects not long after beginning the medication and it must be discontinued and monitored by the Epileptologist or Neurologist. DO NOT EVER STOP THE MEDICATION YOURSELF! * IMPORTANT NOTICE: Some medications needs frequent or sporadic blood level work up. There are some Epileptologists and Neurologists that do not follow through on this, so it pays to do your homework on the drugs you are taking and to ask questions about the drug(s) you are on * EMERGENCY NOTIFICATION: If at any time you experience: shortness of breath, chest pains, numbness that radiates especially to your left side of your body, drooping of your face, sudden unexplained rashes that just came up, or experience anything that is unusual to you, thoughts of suicide - Call your Epileptologist or Neurologist or 911 or Go to the Hospital Immediately. Do not consult with NeuroTalk - We are not Medical Doctors here! The Doctors / Hospital will take care of you and evaluate you and take care of you * This is NOT an exhaustive list - only a BASIC LIST

It would be a tremendous idea to keep a log as when
you are experiencing this "effects". Are these effects
only happening after you've taken the medication(s)
and then goes away and then you're fine afterwards?

Or is it continually persisting?

Such needs to be noted and bought forth to your
Neurologist / Epileptologist. It is possible you may
have a side effect to one of the medication that you
are on; not necessarily it's the Dilantin / Phenytoin.
But you should have your blood levels checked if
you are on this medication however.

NOTE: I AM NOT A MEDICAL DOCTOR, this posting
is only a recommendation - all medical advisories should
be consulted with your Neurologist or Epileptologist!

IF YOU ARE UNHAPPY OR UNSATISFIED WITH THE
TREATMENT / CARE THAT YOU ARE RECEIVING WITH
THE PRESENT NEUROLOGIST / EPILEPTOLOGIST; then
it is strongly recommended that you speak with your
Primary Doctor (after all he/she is your "General Over-
seer" of your medical well being) about moving on to
another Neurologist or Epileptologist.

If you have any difficulties in finding one - there are
places you can go or find one:


Here's a MAP for the nearest Epilepsy Comprehensive
Center (Level 3/4) - click on the link below:

LEVEL 3/4 EPILEPSY COMPREHENSIVE CENTERS - (USA ONLY)

And if that is not suitable, you can also Find a Doctor:

FIND A DOCTOR (Neurologist/Epileptologist) - AESNET/Epilepsy Foundation

Good Luck and Hope this helps!

I agree with the others re getting to a Coprehensive Epilepsy Center. It took me 35 years of general neuros who did nothing but play with the only thing they have, the meds. AThe meds do affect quality of life especially if they do not work like mine didn't. Finally I learned about Comprehensive Epilepsy Centers and went to one in the city where I lived. I wass referred to Empory by my local EFA. They are best buddies with Emory and refer all of the desperate people who call looking for help to Emory. Lots of politics. I had my VEEG as an inpatient at Emory, and during my inpatient VEEG, the staff let me go in to and stay in status for "a Day" according to my epileptologist who was out of town at the time. Great! I was so disappointed to know that the EFA referred me to a place that did me harm and continues to do this to others. The reason I tell you this is because if you go to that site mentioned above, you will find every doc in Emory's epilepsy program there but not the ones who did such a fantastic job for me with my surgery I had 10 years ago now. The facat that the docs are mentioned there does not at all mean they are the quality you seek. Many are not even epileptologists. I used to live in that area where I looked and saw the names. Many are not epileptologists. I encourGE you to ask those who have been treated at the plaCe you are interested in. I did that, and it was a positive experience for me. I got a second opinion after the Emory botch ( great that you will have a friend with you), found one who had has surgery at the same place, and she became my mentor and walked me through the surgery.I have not losgt consciousness since and that was 10 years ao. they did a great thorough job one time. I had my successful surgery at medical College of Georgia in Augusta, Ga, and the neurosurgeon was Dr Joseph Smith. It was one of the the best decisions I have ever made. My life is so much different and better now, and I am in graduate school. My seizures were increasing as others have said. Ask lots of questions and keep us posted. Tsttoo