This is a follow-up to my blog called Taking control during a long-term EEG . . . . Read on if you want to know what life is like when your child is first diagnosed with epilepsy. In my previous post I described our experience with long-term video EEG’s and sometimes you need to follow your instincts.
As I mentioned in my previous post regarding epilepsy, we finally had captured my son’s seizures on a video EEG, and the epitologist determined that the seizures were coming from the left frontal part of the brain. With this information, we hoped that it would guide the epitologist with what medications could be effectively used. They also knew that the seizures started out as Simple Partial seizures but on occasion would change to a Complex Partial Seizure.
At the time I thought we had a big win, but then I found out that numerous anti-epileptic drugs were approved with indications for simple partial seizures, but no specific drug recommended. You can imagine my disappointment. We were back in the trial and error process with the medications.
For the next three years my son was prescribed numerous antiepileptic drugs. There was this constant process of weaning him off one drug and slowly building up another. Some of the drugs included: Topomax, Lamictal, Keppra, and Tegretol. The drugs were scary because of the potential side effects, which is the reason they are very careful about putting you on a medication. Sometimes when we were choosing which medication to try next, the deciding factor was to choose the medication with the least dangerous possible side effect.
During that three years there was a nine month stretch of time that my son was on no medications. It was my decision because none of the medications were working. As I may have mentioned before, I really didn’t like using all of these medications. Since the medications weren’t helping I decided we needed to take a break from them. It was also a chance to see if the medications were actually causing some of the seizures. Over that nine months nothing happened. He continued to have seizures. They were no worse or no better without medication. After the nine months our neurologist made one more suggestion and we went back on a anti-epileptic seizure medication.
As you can guess this drug did not have any positive effect and my son’s epilepsy was classified as irretractable epilepsy, also called refactory epilepsy. Irretractable epilepsy is defined as having seizures that do not respond to medications. Thirty percent of people with epilepsy have these kinds of seizures.
At that point the neurologist suggested that we consider getting an implanted vagal nerve stimulator (VNS). The VNS was approved by the FDA in 1997 in combination with seizure medication for partial epilepsy in adults and adolescents. The Epilepsy Foundation provides the following information about the VNS:
Vagus nerve stimulation (VNS) is designed to prevent seizures by sending regular, mild pulses of electrical energy to the brain via the vagus nerve. These pulses are supplied by a device something like a pacemaker. It is placed under the skin on the chest wall and a wire runs from it to the vagus nerve in the neck.
The vagus nerve is part of the autonomic nervous system, which controls functions of the body that are not under voluntary control, such as the heart rate. The vagus nerve passes through the neck as it travels between the chest and abdomen and the lower part of the brain.
Cyberonics was the manufacturer of the VNS that my son has implanted. The following information is provided by Cyberonics:
The VNS is implanted via surgery. The device is implanted under the skin on the left side of the chest. A second incision is made on the neck where the wire from the stimulator is wound around the vagus nerve on the left side of the neck. The brain is not involved in the surgery.

Picture provided by Cyperonics at http://us.cyberonics.com/en/vns-therapy/
The device is a flat, round battery, about the size of a silver dollar—that is, about an inch and a half (4 cm) across—and 10 to 13 millimeters thick. Newer models may be somewhat smaller.

Picture provided by Cyperonics at http://us.cyberonics.com/en/vns-therapy/
The neurologist programs the strength and timing of the impulses according to each patient’s individual needs. The settings can be programmed and changed without entering the body, just by using a programming wand connected to a laptop computer.
For all patients, the device is programmed to go on for a certain period (for example, 7 seconds or 30 seconds) and then to go off for another period (for example, 14 seconds or 5 minutes). The device runs continuously, usually with 30 seconds of stimulation alternating with 5 minutes of no stimulation. The patient is usually not aware that it’s operating.
Holding a special magnet near the implanted device causes the device to become active outside of the programmed interval. For people with warnings (auras) before their seizures, activating the stimulator with the magnet when the warning occurs may help to stop the seizure. Many patients without auras also experience improved seizure control, however.
The battery for the stimulator lasts approximately 5-10 years.
It was a big decision to go down this path. I did a lot of research. At the time it had been on the market seven years. We were very anxious about the decision because we were putting a medical device inside my son’s body with no guarantees that it would work. Our neurologist indicated my son was ideal for this because he was usually conscious when he had his seizures. Before we made our finally decision we had an opportunity to meet with a person who already had a VNS. This was really nice because we could hear her personal experience, see where the incisions were made, and see how it operated.
As a result of meeting with her, she demonstrated how the VNS affected her voice when it went off. The vagal nerve is located right by the voice box. When it is activated it causes the voice box to vibrate if you are talking. As you get used to it there is no sensation. When we first got it slightly hurt, no more than a small sore throat. As the body adjusted to it the sensation goes away. Plus they slowly increase the current over time so that your body can acclimate to it.
They give you a magnet which you use to activate the device. When you swipe the magnet across the device it will activate the VNS but at a slightly higher rate than when it normally goes off every five minutes. My son uses this if he has the sensation of seizure happening.
In our checkups the neurologist always does a check of the device. He takes this device and just holds it over the VNS and the two devices talk to each other. The neurologist can adjust setting and look at statistics about its usage.
Since my son had the VNS implanted he has not had any more tonic clonic seizures (formerly known as grand mal), and he no longer had these flutter seizures where they would rapidly start and stop. Unfortunately, his most common seizure continued to happen. These seizures were later determined to be myclonic seizures which consisted of a unsually tugging of the eye, and occasionally affecting other parts of his face and body. These continued happening frequently, as much as five or six times a day.
My son now has had the implant for seven years, which is close to the time when the battery will need to be replaced. We will decide if we will be replacing it. There are times my son wishes he didn’t have it. He doesn’t like the bump on his chest. Plus he can’t participate in any contact sports. I suspect we will want them to turn if off and we will see what happens. If he no longer has those seizures we may keep the VNS off or have it removed.
To Be Continued . . .
Facing the antiepileptic drugs
Posted: July 11, 2011 in Epilepsy, Indulgent CommentaryTags: AED, AEDS, antiepileptic durgs, benign rolandic epilepsy, Carbamazepine, clinical trials, EEG, epilepsy, epilepsy awareness, Epilepsy Foundation, FDA, Neurological Disorders, neurologist, seizure, seizures, Tegretol
This is a follow-up to my blog called A diagnosis of Benign Rolandic Epilepsy . . . Read on if you want to know what life is like when your child is first diagnosed with epilepsy. In my previous post I described Benign Rolandic Epilepsy as a diagnosis for my son.
As a result of the diagnosis of Benign Rolandic Epilepsy, the neurologist prescribed tegretol, also known as carbamazepine. My reaction to this wasn’t the best. I knew my son would have to take antiepileptic drugs, but prior to this all happening I have been one of those people who avoided medications unless it was absolutely necessary. There were a number of reasons for this including:
Suicidal Tendencies
The U.S. Food and Drug Administration (FDA) has placed a warning on all antiepileptic medications, including Depakote, to alert consumers of the increased risk of suicidal thoughts or actions associated with the medications. Studies have shown that patients receiving treatment with antiepileptic medications may be at twice the risk of suicidal thoughts when compared to patients taking a placebo.
Black Box Warnings
Liver Damage
In some cases, Depakote has been associated with fatal liver failure, primarily within the first six months of treatment. Certain preexisting conditions may increase the risk of liver failure.
Birth Defects
Depakote has been shown to cause severe birth defects such as spina bifida, a neural tube defect, if used by woman who are pregnant. Alert your doctor immediately if you suspect you may be pregnant during treatment with Depakote.
Pancreatitis
Depakote has been linked to life-threatening pancreatitis, or inflammation of the pancreas, in some cases. Pancreatitis may develop immediately after starting treatment or after several years of use.
Enough of my ranting, suspicions and conspiracy theories. With the diagnosis of Benign Rolandic Epilepsy I was faced with the decision to put my son on Tegretol. It wasn’t really a decision. What choice did I have? I was really concerned about the number of seizures my son was having. Though at the time the neurologists would not comment on the danger of having multiple seizures over and over. My neurologist is an expert and I laid the life of my child in his hands. (Later, I learned that this may have not been the right decision.)
So my son went on Tegretol. Upon prescribing the drug the neurologist told us that we would have to slowly raise the dosage over time. Red flags. This in itself should have told me the danger of this drug. It appeared that raising the dosage too fast had adverse effects. So the body had to adapt to the drug to avoid the adverse effects. With my fear of drugs this set off red flags but I decided to just closely watch the situation.
My son was on the drug for probably 60 days. It was at that stage that I started noticed that my son was changing. He was having outbursts. He was really hyperactive. I had to really be careful and hold onto him when we were out and about because he would just run off. On one occasion we were at an optometrist and suddenly my son shot out the door to the street and he took off. An oncoming car almost collided with him. It was then that I really investigated the drug. It was obvious to me that the drug was changing my son.
Upon research I found a number of things that scared me. Yes I should have known this when the drug was given to us by the pharmacist, but at that time all I could think of was that I needed to get these seizures stopped. They were happening, at varying lengths of intensity, 15 – 20 times per day. The information that I found for tegretol included:
Up to 30% of individuals may experience sedation
An occasional patient will develop behavioral problems such as hyperactivity.
Common adverse effects include drowsiness, headaches and migraines, motor coordination impairment, and/or upset stomach. Carbamazepine preparations typically greatly decrease a person’s alcohol tolerance.
Other potential side effects which may occur with Tegretol include low sodium levels and increased eye pressure in glaucoma patients. Bone marrow suppression and liver damage occur in rare cases.
Less common side-effects include cardiac arrhythmias, blurry or double vision and/or the temporary loss of blood cells or platelets and in rare cases can cause aplastic anemia.
With normal use, small reductions in white cell count and serum sodium are common; however, in rare cases, the loss of platelets may become life-threatening. This occurs commonly enough that a doctor may recommend frequent blood tests during the first few months of use, followed by three to four tests per year for established patients.
Unless severe reactions warrant, abrupt discontinuation of Tegretol therapy should not be undertaken.
High potential for drug interactions; caution should be used in combining other medicines with it, including other antiepileptics
There are also reports of an auditory side-effect for carbamazepine use, whereby patients perceive sounds about a semitone lower than previously.
Carbamazepine increases the risk of developing lupus by 1.88
Carbamazepine may aggravate juvenile myoclonic epilepsy, so it is important to uncover any history of jerking, especially in the morning, before starting the drug. It may also aggravate other types of generalized seizure disorder, particularly absence seizures.
In addition, carbamazepine has been linked to serious adverse cognitive anomalies, including EEG slowing and cell apoptosis.
The FDA informed health care professionals that dangerous or even fatal skin reactions (Stevens Johnson syndrome and toxic epidermal necrolysis), that can be caused by carbamazepine therapy
It may take a few weeks or longer before you feel the full benefit of carbmazepine
If you have a seizure disorder and you suddenly stop taking carbamazepine, your seizures may become worse. Your doctor will probably decrease your dose gradually.
Your mental health may change in unexpected ways and you may become suicidal (thinking about harming or killing yourself or planning or trying to do so) while you are taking carbamazepine for the treatment of epilepsy, mental illness, or other conditions
Call your doctor right away if you experience any of the following symptoms: panic attacks; agitation or restlessness; new or worsening irritability, anxiety, or depression; acting on dangerous impulses; difficulty falling or staying asleep; aggressive, angry, or violent behavior; mania (frenzied, abnormally excited mood); talking or thinking about wanting to hurt yourself or end your life; withdrawing from friends and family; preoccupation with death and dying; giving away prized possessions; or any other unusual changes in behavior or mood.
Some side effects can be serious. If you experience any of these symptoms or those listed in the IMPORTANT WARNING section, call your doctor immediately
Carbamazepine has been sold under the names Biston, Calepsin, Carbatrol, Epitol, Equetro, Finlepsin, Sirtal, Stazepine, Telesmin, Tegretol, Teril, Timonil, Trimonil, Epimaz, Carbama/Carbamaze (New Zealand), Amizepin (Poland), Karbapin (Serbia), Hermolepsin (Sweden), Degranol (South Africa), and Tegretal (Chile). (Information from Wikipedia.)
After reading all of this I was pretty frightened. It was also was an explanation for the change in his personality and his hyperactivity. Then on top of it all, after a couple of months of taking the drug his seizures had not reduced. Back to the neurologist we went and requested that he be taken off the drug. It took another month or so to wean my son off the drug. Meanwhile they didn’t want to start a new drug due to drug interactions and if new symptoms occurred they wouldn’t know which drug may be causing it. This whole experience told me that I need to sit up and pay attention. My son’s life needed to be in my hands.
To be continued . . .
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