Q:I first had an epileptic seizure 32 years ago, and for the following 10 years had about two grandmal seizures a year. Following the first episode I was put on phenobarbitone, which I have remained on until the present day. Between 1978-1992 I as

The first inquiry led to my being offered phenytoin as a replacement drug. The effects, however were so destabilizing that I returned to the phenobarbitone within a couple of days. On subsequent occasions when I approached my GP and asked to see a consultant, I was advised that as my epilepsy had been controlled by phenobarbitone, any change could lead to a destabilizing of the condition.

Last September I suffered a further grand mal seizure and underwent a series of tests in hospital, all of which showed “negative” results. The end result, however, was that a change in my medication was prescribed, and I am now being weaned off phenobarbitone and on to carbamazepine.

I have been unable to get clear answers to the question of the side effects of prolonged usage of phenobarbitone. D P, Exeter…….

I understand that the drug Epilim taken by mothers with epilepsy when pregnant can lead to an increased risk of babies being born with congenital abnormalities, such as cleft lip, spina bifida and even microcephaly. D J, Ilford…….

A:Epilepsy, as you know, is a condition in which the electrical circuitry of the brain produces too many charges, overloads and then short circuits, causing convulsions, abnormal behaviours, or sensations, depending on which part of the brain is affected.

Most anti convulsant drugs work by damping down brain cell electrical activity, in order to stop this build up. The idea is to stop the seizures without losing any brain function. But this is a delicate balancing act requiring that a doctor be highly educated in the various anti convulsant drugs, understand the kinds of seizures affecting a particular patient, and work with the patient as a partner in keeping a record of seizures, a regular monitoring of EEGs and also a monitoring of the levels and effects of the drug in the patient’s body.

Some doctors feel that a patient must take an anti epileptic drug for the rest of his life; others, that daily doses can be slowly reduced by steps every few weeks in patients who have remained seizure free for two years and finally stopped if no seizures have occurred during that time.

Phenobarbitone carries a host of serious risks. Among the laundry list of side effects they can cause: Parkinsonian effects (involuntary movements), impaired judgement, drowsiness, allergic reactions and depressed breathing. In long term use among epileptics they can cause folic acid deficiency anaemia and possibly liver damage. They are particularly worrisome in people with kidney, liver or chest disease. One paradoxical effect is to occasionally produce excitation and restlessness.

Of course the big problem with barbiturates is that they cause dependency. You can also develop a psychological dependence . If the drug is stopped suddenly, you can experience anxiety, headaches, tremors, stomach cramps, vomiting, insomnia and rapid heart beat. Phenobarbitone has been known to cause confusion, hallucinations and mental depression, and all sleeping pills cause memory problems.

Carbamazepine is now being offered as a more modern alternative to the early anti convulsants. If too high a dose is started too quickly it can cause dizziness and double vision. Other side effects include stomach and intestinal problems, serious blood disorders, fluid retention, visual disturbances, drowsiness and, in rare cases, jaundice and kidney damage. It should never be used in people with heart problems or those with impaired liver function. You must have regular blood tests when you first go on it.

A randomized study published in the New England Journal of Medicine (21 January 1993) found no difference after three years in efficacy between phenobarbital, phenbytoin, carbamazepine and valproate in children and adults with newly diagnosed generalized seizures.

There is a good argument for your staying on phenobarb because it’s been around for 20 years and we know most of what it can do to you. Also if you’ve been taking it for 20 years, you’ve probably developed all the side effects you’re going to.

However, the main problem appears to be the attitude of your doctor. Good epilepsy management results from the partnership of a trained consultant like a neurologist working in tandem with the patient to keep vigilant track of the patient’s reaction to the drugs. Furthermore, many people are put on epileptic drugs when they are young and may outgrow the need for the drug or even the dosage they started on. It is vital that you be placed in the hands of a highly experienced neurologist who will work with you on drug management. You might also have your calcium and magnesium levels checked and also a test done for low blood sugar, since low levels of any of these can bring on seizures.

As for Epilim (which is sodium valproate), the Physician’s Desk Reference, which is obliged by American law to print full explanations about its products, says that all antiepileptic drugs can cause birth defects. Specifically, it says valpoic acid “may produce teratogenic effects in the offspring of human females receiving the drug during pregnancy. . . . Therefore, antiepileptic drugs should be administered to women of childbearing potential only if they are clearly shown to be essential in the management of their seizures.”

The Centers for Disease Control (CDC) has estimated the risk of valproic acid exposed women having children with spina bifida to be approximately 1 to 2 per cent. This risk is similar to that for nonepileptic women who have had children with neural tube defects. In animal studies there have been reports of increased incidence of cleft lip and palate, and heart malformations.

If you have epilepsy, and wish to get pregnant, it’s vital to get to a highly experienced neurologist who can keep you on a greatly reduced level of the drug or determine before you get pregnant whether you can stay off the drug during your pregnancy.

A lot of people are kept on drugs for a lifetime only because they’ve had a minor fit in their childhood.

(Note add info about Epilepsy check to grossly calcium and magnesium or hypoglycemia. Stick with traditional consultant. Improve general health)

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Written by What Doctors Don't Tell You

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