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:

  • Many drugs do not have research as it relates to long-term effect.  In fact very few drugs are tested for long-term effects. Even if they are tested it is after the drug has been licensed and marketed.  In fact this is the approved definition of clinical trials:
A clinical trial is a research study to answer specific questions about vaccines or new therapies or new ways of using known treatments. Clinical trials (also called medical research and research studies) are used to determine whether new drugs or treatments are both safe and effective. Carefully conducted clinical trials are the fastest and safest way to find treatments that work in people. Trials are in four phases: Phase I tests a new drug or treatment in a small group; Phase II expands the study to a larger group of people; Phase III expands the study to an even larger group of people; and Phase IV takes place after the drug or treatment has been licensed and marketed.
  • Many drugs that passed FDA approval later were found to have negative long-term effects.  To name a few and the repercussions of the medication:
    • ‘Seldane’, the top-selling antihistamine in the world for more than a decade, was on the market for 13 years until the Food and Drug Administration (FDA) removed it in 1997, 7 years after the drug’s cardiac toxicities were identified in 1990.
    • Rezulin’, a diabetes drug withdrawn by Britain in 1997, wasn’t withdrawn by the Food and Drug Administration (FDA) until 2000, during which time Warner-Lambert earned $1.8 billion
    • Pondimin:  A component of Fen-Phen, the diet drug approved in 1973.  Its link to heart valve damage and lethal pulmonary disorder wasn’t recognized until shortly before its withdrawal in 1997
  • In some cases when a drug has negative effect, rather than taking the drug off the market, the FDA puts a black box label on the drug with warnings.  Why black?  Does black represent a warning?  Why not take it off the market?  Not their problem.  Someone in the future will have to deal with the issues.  At what expense?  A life?  Here is an example (taken from
Depakote Recall/Black Box Warning Information: 

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.

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.

  • There is so much that the medical industry does not know about the human body.  How could they then know the effects of these medications.  I have actually had a doctor tell me that the medication we were discussing works, but they (as in the medical community) do not know why it works.
  • There is also the concept of over use of a medication and then no longer effective.  A good example of this is antibiotics.  My son suffered from severe ear infects when he was a baby.  We had tried four different antibiotics before we found one that would work.
  • In general it is my belief  that there are too many chemicals that are being put into our bodies and we have no idea what will the effect be.  Our food is injected with chemicals to make the food do something that it normally wouldn’t such as shelf life.
  •  Many drugs are not tested to see the results of combining these drugs.  Drugs may behave completely differently when combined with another drug.
  • The FDA does not test the drugs.  There is no independent testing.  The manufacturers themselves conduct the tests.  I think there is a conflict of interest here.  The drug companies are to close to our government.
  • Finally, I lack trust in the medical industry.  The gap between helping people versus making a profit is almost nonexistent.  A good example is when I recently did a follow-up visit with my doctor.  During our discussion he asked, are you taking your cholesterol medication.  I responded yes.  He then pulls out a letter from my file from a drug company that said that I was behind by one month in renewing the prescription for my cholesterol medication.  This didn’t smell right to me.  What business is it of the drug company?  Greed?  Not my well-being.

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 . . .

  1. WI Snowflake says:

    Thanks for reading the blog. Antiepileptic drugs are pretty much all bad. It is kind of scary. My son has been through a lot. Take care, and come back another day to read this blog. I post notice of updates on Twitter. On twitter I am @WI_Snowflake

  2. Sophie says:

    Hi, I’m taking now for about 5 years Depakine Chrono. That is the Dutch name, but I think it the same as Depakote. I’m not epileptic, but have the same symtoms. I also was shock to read the brochure witch came with the medication.
    Luckly I never got any side-effects except for some drowsy feeling. I check my blood once a year for liver problems. But the idea what this medication can do to an unborn child is chilling me (I don’t have any children). Maybe I change to other medication this year.

    I hope you can get used to it. And maybe in the future there are some more human friendly medicens.

    bye, Sophie