Needing help for my mother's seizures - Epilepsy Message Board

lorri · 03-25-2006, 12:05 PM

I am new to this board. My mother had lung cancer which mestasized to her brain. Did radiation for the mets, but she has had two seizures in the last 3 months. Neo insists on anticonvulsant meds. First started with Dilatin. Her levels were through the roof, now on trileptal. My questions is are people on these always dowsy and naseauted or is related to her dosage? She has been on anticonvulsants since February 4. She and dad wanted to seek a second opinion and I was there when her neo came into the the room and verbally attacked them saying "if you want a second opinion at least pcik someone who is smarter than I am". What a arrogant ***! He wants to change her now to Keppra but we have read the mental side effects are awful. Just looking for some input since our family has no knowledge at all on this.

neurowreck · 03-25-2006, 04:43 PM

Initially, it's not uncommon for people to be tired when they first get on a med, but that should get better in time if the dose isn't too high. We're sorry about your mom- mine had bilateral breast CA, lung CA, and then brain CA- but she had surgery and radiation, and survived a long time after that (like 10 years or something). Her death was not related to her cancer, but idiots who didn't treat urinary sepsis properly.

If a doctor resists a second opinion, I'd run screaming from the room- means someone who is too insecure to know their own limitations. Every patient is different, and not every doc can treat all of them- a second opinion sounds wise- especially if that guy is being so nasty about the idea.

tkdmom96 · 03-25-2006, 06:13 PM

Hello and Welcome to the boards,

I'm sorry your Mom is going through such a difficult time. The most important thing to do is get her on the right med and feeling the best she can.

Dilantin is an older med that is USUALLY tolerated by many as a first med to try. Tegretol also falls into that category. Did the "smart" Neuro inform you of the type of seizures he feels she is having? That plays a key role in the med that is chosen. Our daughter has Complex Partial seizures and has been on the following (to give you an idea of others that are available): Tegretol, Tegretol XR, Carbatrol (family of Tegretol), Depakote, Keppra, Neurontin, and Lamictal.

Others available are: Topomax, Trileptal, Dilantin, Zonegran, Zarontin, Felbatol, Gabitril, Primidone, Klonopin, Phenobarbitol, Diazipam (Valium). Could be more, but these I am aware of.

When the doc begins a dose they decide by the age, weight, type of seizures and what clinical studies have shown as far as the average dosage of tolerance to the med, before any side affects cause problems. Many times our daughter needed to be lowered because she was sensitive and didn't need to be in the middle of dosage ranges for her blood levels. Everyone is different.

The "smart" doctor should know that the lowest amount of meds to control the seizures along with the least amount of side affects is THE goal. Has he given these meds enough time to see that they work or not? Has he lowered the dosages to see if that is what was needed to reduce side affects?

You definately can experience nausea, irritability, mood swings, depression, weight loss, weight increase, hair loss, dizziness, blurred vision, headaches, memory loss etc. on AEDs. If you look at it this way...AEDs (antiepileptic drugs) are like a blanket. They sort of "coat" the neurons in the brain and "relax" them so they don't misfire and cause seizures. If you figure all that the brain does for us: eyesight, hearing, thinking, emotions, motorskills, memory etc. and all of these areas within the brain, you can see where the side affects come from and why. Some people tolerate side affects better
than others.

We had the same neuro for 13 years and told him NO to a few meds or duo therapies he recommended over the years. He didn't always agree but respected our decisions. They were based on research I did.

Why does the "smart" neuro want to change her over to Keppra now? Keppra is known for causing depression, aggression and irritability. That would also be 3 meds in a very short time. I would be concerned over that part. Has he given the first two enough time to work through the side affects, or lower the dosages to see if that helps. I guess I would question him on that.

REMEMBER...HE WORKS FOR YOU...YOU PAY HIS SALARY...you are your mother's advocate. You have EVERY right to question him about his decisions. He is to be held ACCOUNTABLE for what he is suggesting to you. If he doesn't answer...time to move on. Ask the oncologist for a recommendation. They have connections to other doctors when cancer begins to affect other areas.

All my best as you look for answers. I'm sure it is difficult enough to deal with the cancer aspect, let alone another. The goal is to keep your Mom as happy (as herself) and comfortable as you are able. ANY doctor should be willing to do that and not be arguing over HIS "smartness" at a time like this. That is very selfish and just not an appropriate thing for your family to be dealing with.

Peace to your family,
Vicki

tkdmom96 · 03-25-2006, 06:24 PM

A little more info...

Our daughter had a Left Temporal Lobectomy/Hippocampectomy in June 2004 and so far, has been seizure free. They were able to find the focus of her seziures and removed the area. She was diagnosed at the age of 8 months and seized until the age of 15 3/4. She currently takes Lamictal twice per day and we are looking at trying to go off meds this summer to see if the surgery was a full success. It is still a success to us...no seizures, even with meds. She has her driver's license and her own car, which we never thought she'd be able to do. GBTG!

Vicki

Travis from MN · 03-25-2006, 09:22 PM

I never had an initial med result at toxic levels (high range).

I Can tell you Dilantin's typical range is 10-20 on the blood test scale from the lab when used to treat epileptics. Thats the range they want to keep it within usually.

When I had drug interactions, weight loss was a side effect, Dilantin levels went sky high and I couldn't walk without a cane. Vision was impaired (couldn't read!). Thankfully we found out what the problem was quickly.

Dilantin takes about a week to adapt to your system usually. During that time the patient may expeience symptoms of the drug when the body is adjusting (or when increases/decreases are made).

As for trying to find "the correct drug" ; it can be hit and miss sad to say. I was on a rollercoaster of drugs that was trial and error, combinations included in an attempt to find something that would work for me. They can't pull a remedy off the shelf and have it work for a patient. Each person is different. The same drug, or combination of drugs will not work on Patient B that worked on patient A.

Making notes on a pad and keeping a seizure log helps greatly for the Dr's. Note any FX of the drugs, if seizures increased or decreased, if the TYPE of seizure changed or severity increased or decreased. If sleep has changed, eating, moods, exercise, all of this information is helpfull to Dr's. Not that some will listen, but a good Dr will listen to it.

SOME of the changes may be psychological to the patient (the changes within the first 3-6 months) if they "expect" changes. It's interesting what our minds can do. Keeping the log is always benificial. It was one of the factors that helped me be approved for Disability.

--Travis