simple partial seizures

Stacey, I experience the exact same thing as yourself. I tend to drop to the floor and hold on just to try to keep a grip. I've been practicing some hollistic methods and recently went 2 months without a seizure. Then last week had a setback. But my own fault. I'm in the pink again back on my routine and hope to be done. I live in central California at the coast. I'm looking for a group that meets once a month or so. Know of anything?Karen

I don't know how much of a help I can be, but I also have Simple Partial Seizures, as well as Complex Partial Seizures. I also have Grand Mal, and Myoclonic seizures as well.My situation is called a Mixed Seizure Pattern. I have just been diagnosed by someone who actually knows the field of seizures, and he said it was called TLE, in association with other seizure types. I have been wandering around taking Tegretol XR for 3 years before they threw me into a bed in the EMU for 8 days. No one where I lived knew what they were doing. It wasn't until I got to Phoenix, that people knew what they were doing.My sp szs are of the sensory type. I smell a really unpleasant odor. 95% of the time, I smell urine and rotting flesh together. The other percent of time I smell something nasty, but can't pinpoint what it is. I think it is something dusty or something.Sometimes, I get motor symptoms such as getting nasty and downright ugly and hostile before I get a full-blown Complex Partial Seizure, but most of the time even for them, I just get the smell--off and on through out the day, and then after I have gone to bed the daggum things strike, and at times like 2 am MST and I am found wandering around the living room, doing things with my fingers to things on the tables I pass. I tip over chairs, and part the chairs away from the bar and never miss a beat. I can sort of, but not really answer my mom when she gives me calm gentle commands, but I can sure make garbage out of the English language pretty good.No recollection of ANYTHING the next day. I usually think I have slept the whole night, but my mom said I had other ideas.My mom is afraid I will go outside, and we have a pool, so that is not good at all. She took to installing a dead bolt on the screen door that faces the road, and automatically closes the solid door with the two dead bolts that were arleady there when we moved in.As for the Dilantin, I am not sure what type of temporal lobe seizure you are having. It is very specific to only two types of them.It is used for psychomoter or Complex Partial, the ones I have, or focal seizures, which don't necessarily take place in the temporal lobe. They can happen anywhere in the brain.My suggestion, start talking to your doctor about a different med used only for the treatment of partial seizures.Dilantin is a very nasty drug. It can cause toxic levels in your blood with no side effects and you would never know it. It also interacts with a truckload of other OTC and RX meds. You are VERY limited to what you can take for things. There are even certain foods and drinks you can't have as well. It can also cause a weight gain of up to 30 pounds or more. The Tegretol XR that I took caused liver toxicity, 40 pound weight gain, among other side effects. Tegretol is not considered a Hydantoin AED. All the Hydantoins are dangereous drugs. As well as the Tegretol, because it is closely related to Dilantin. These drugs do work for some people, but for the most, they give them unwanted problems.I graduated from YSU in Ohio last year, and probably took at least 6 classes relating to the pharmacology and pharmacotherapeutics of drugs for my degree.That is how I learned some of this, the rest of it, is because I have to go through alot of what you went throug and are going through.I take the maximum dose of Neurontin for Partial Seizure control. It works good enough for me, even though I still continue to have them. There are no side effects, or drug-drug interactions.It is considered a safe drug to use if you are pregnant or becoming pregnant, because it poses no risks to the baby in any way.A few other drugs used for the control of partial seizures are Lamictal, Keppra, Depakote/Depakene, Felbatol, Gabitril, Topamax, Zarontin, Zonegran.The ones that give people the most problems seem to be Keppra, and Lamictal. Topamax is a really good drug for resistant partial seizures, I was on it for awhile, but due to the side effects it caused with me, I went off it when I was in the EMU.I now take the same 3600 mgs of Neurontin, and 750 mgs of Depakote (which I have no problems with, either), people say that it causes alot of sleepiness. However, I have never had that problem. That just shows how drugs affect everyone differently. What is good for one person with the same problem, doesn't mean it will be the right one for you. And just because a doc gives you something doesn't mean that its right, either.They make medication mistakes all the tme. They have to play trial and error with epileptics, so that they CAN find the right drug or drug combinations. It can take several years, or several months, but it has to be done. Don't expect them to park you on something the first time and have that be the drug you will stay with, because I can guarentee you, from my experience with this, that it won't happen that way.It will take some time to find what the right balance is for just you.You may need a different medication that is used soley for controlling all ytpes of partial seizures. Or, you may have progressed into having complex partial seizures following an aura.It is only called an aura when it precedes another type of seizure, otherwise it is just referred to a sp sz.Nancy

I turn 44 tomorrow and am going through just about what you are. Been through a lot this past month. Begging for help from ER doctors. They all kept saying I was having panic attacks I kept saying no this all felt too weird. I just want to know I am not going nuts. Found out my Depakote level was too low and I needed to increase dosage. I feel so helpless though like nobody undestands Hang in there your not alone Take Care