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Children and adults with hydrocephalus are at increased risk of seizures

[K]eep a log book or record of your seizures to help your doctor properly diagnose and treat them.

Doctors...choose from a large arsenal of antiseizure medications....

[A]sk your doctor what to do if you should forget to take a dose of your medication. Doubling up...can be harmful.

"Swallowing your tongue" is physically impossible.

[I]f the seizure lasts more than a few EMS

Side Effects: Part II

The following excerpt is taken from Chapter 7 of Hydrocephalus: A Guide for Patients, Families, and Friends by Chuck Toporek & Kellie Robinson, copyright 1999 by O'Reilly & Associates, Inc. For book orders/information, call (800) 998-9938. Permission is granted to print and distribute this excerpt for noncommercial use as long as the above source is included. The information in this article is meant to educate and should not be used as an alternative for professional medical care.


When people hear the word "seizure," the first thing that usually comes to mind is a person lying on the ground, writhing with convulsions. However, seizure activity can range from staring off into space for a few seconds to loss of consciousness with convulsions. Numerous medical conditions cause seizures, and treatments exist to control or eliminate them.

What causes a seizure?

Some of the causes of seizures in persons with hydrocephalus are:

  • Reaction to a drug.
  • Buildup of scar tissue in the brain from operations and shunt revisions.
  • Infections such as meningitis or encephalitis.
  • Brain abnormalities.
  • Increased ICP.
  • Subdural hematoma (SDH).
  • Brain tumors or cysts.
  • Metabolic conditions, such as hypoglycemia (a deficiency of sugar in the bloodstream), hyperglycemia (too much sugar in the bloodstream), electrolyte imbalances, uremia (excessive amounts of urea, waste products produced by the kidneys, in the bloodstream), and fluid overloads.

Children and adults with hydrocephalus are at increased risk of seizures, particularly if there has been a complication (such as an intracranial hemorrhage) during a shunt placement or revision procedure. Whatever the cause of the seizures, they should be taken seriously--seek immediate medical attention.

Phases of a seizure

Although the causes of seizures vary, seizures themselves tend to follow a general pattern.

There are essentially four phases to a seizure:

  • The aura phase indicates the onset of a seizure. During the aura phase, the patient may fall into sudden unconsciousness, experience localized muscle spasms (including involuntary jerking or shaking of one hand, forced turning of the head, etc.), a sense of fear, false sense of smell, or a feeling of déjà vu. The patient may or may not experience all of these sensations. Most people have identical auras before each seizure, helping them predict when a seizure is imminent.
  • The tonic phase is when all of the muscles in the body become tense or rigid. Patients often make noises--grunts or a shrill cry--prior to losing consciousness. The tonic phase usually lasts from a few seconds to a few minutes.
  • The clonic phase, which may or may not follow the tonic phase, is associated with loss of consciousness, convulsions, loss of bowel and bladder control, salivation or drooling, and irregular breathing and heart activity. The clonic phase of a seizure can last from 1 or 2 minutes to 30 minutes or more.
  • The postictal phase follows a seizure. The patient may or may not regain consciousness during the postictal phase. If he regains consciousness, he will most likely be tired, confused, and unaware of what happened or where he is.

Seizures do not always include the four phases mentioned here. For instance, your child may experience only the aura phase followed by the postictal. Or she may go from aura to tonic or clonic (one or the other), and then to postictal.

Types of seizures: partial and generalized

There are two main types of seizures: partial and generalized. Partial seizures are caused by specific areas of the brain. With partial seizures, the physical response directly corresponds to a region in the brain where the problem lies. The right side of the brain affects the left side of the body, and vice versa, so if muscle spasms are on the right side of the body, the problem will lie in the left side of the brain. It is rare that a person who is having partial seizures will lose consciousness, although he may feel dazed or confused following the episode.

Partial seizures are further categorized as:

  • Simple-partial. The person does not lose consciousness during the seizure.
  • Complex-partial. The person will lose consciousness.
  • Secondary-generalized. The onset of the seizure can be directly attributed to one part of the brain, which then triggers a generalized seizure.

Generalized seizures are more severe and involve both sides of the brain. They are accompanied by convulsions, muscle activity on both sides of the body, and loss of consciousness.

Symptoms associated with partial and generalized seizures


Type of Seizure




Interference with motor activity (i.e., muscle spasms, shaking hands, etc.)






Unfocused attention



Loss of consciousness



Salivation or drooling



Muscle constriction or tenseness (tonic phase)



Bilateral convulsions (clonic phase)



Loss of bowel or bladder control



Temporary amnesia (postictal phase)




Since seizures may indicate a deteriorating neurological condition, the condition should be evaluated immediately to determine the cause. Your doctor will try to find out what is causing the seizures and then determine a course of action for treating them. Tests that may be performed to determine the cause of seizures include:

  • Blood tests check for hormone imbalances, hypoglycemia, or hyperglycemia.
  • CT and MRI scans look for any intracranial abnormalities. These could include increased ventricular size, SDH, or tumor or cyst growth.
  • A lumbar puncture (LP) or shunt tap looks for signs of infection, an increased white blood cell count, or decreased glucose (sugar) levels in the cerebrospinal fluid (CSF).
  • An electroencephalogram (EEG) monitors brain waves to determine the area of the brain where the seizure is originating.
  • ICP monitoring checks for elevations or fluctuations of ICP that could trigger the seizures.

Monitoring seizure activity

It is a good idea to keep a log book or record of your seizures to help your doctor properly diagnose and treat them. Information that you can include in a seizure log includes:

  • Date and time of the seizure.
  • Duration, or how long the seizure lasted.
  • Notes about what happened during the seizure. This could include details about the aura, loss of consciousness, convulsions, temporary amnesia, and how you felt afterwards.
  • Notes written by people present at the time of the seizure.

This information helps your neurologist determine the frequency and type of seizures and obtain a full picture of your seizure activity.

Treating seizures

Seizures are treated with drugs and, on rare occasions, surgery. Doctors can choose from a large arsenal of antiseizure medications for initial treatment of seizures. Surgery is reserved for unusually severe, intractable seizures or for those patients whose seizures do not respond to medication.

Questions to ask before taking antiseizure medication

Before you take any drug for seizures or give any to your child, ask the doctor for basic information, including:

  • What is the dosage? How many times a day should it be given?
  • What are the common and rare side effects?
  • What should I do if any of the side effects occur?
  • Will the drug interact with any over-the-counter drugs (e.g., Tylenol) or vitamins?
  • What should I do if I forget a dose?
  • What are both the trade and generic names for the medication?
  • Should I buy the generic version?

Common side effects

Each of the antiseizure medications in this section have a long list of possible side effects. The following side effects are commonly found with these medications:

  • Constipation.
  • Diarrhea.
  • Difficulty concentrating or processing thoughts.
  • Dizziness.
  • Drowsiness.
  • Jaundice (yellowing of the eyes and skin).
  • Lack of coordination.
  • Loss of appetite.
  • Nausea and/or vomiting.
  • Skin abnormalities, including flaking, scaling, dryness, or the occurrence of red, blotchy spots which could indicate possible liver damage.
  • Temporary hair loss.
  • Weight loss or gain.

Check with your doctor and pharmacist for a complete list of side effects associated with any medication you are taking to control seizures. You can also look up side effects in the PDR (Physician's Desk Reference), located in the reference section of your local library. Online, the OnHealth site ( has a pharmacy section that lists comprehensive information on more than 8,000 drugs.

Antiseizure medications

There are a variety of antiseizure medications on the market for treating seizures. Based on the test results and the type of seizures, your neurologist will determine the best drug or drug combination to help reduce the frequency of seizures. This section lists some of the common antiseizure medications, including information about possible drug interactions and side effects.

As with any medication, it is very important to take antiseizure medication as directed by your doctor. Contact your doctor immediately at the onset of any adverse symptoms from the medication. Be sure to ask your doctor what to do if you should forget to take a dose of your medication. Doubling up on the next dose can be harmful. If you forget to take more than one dose in a day, contact your doctor before taking the next scheduled dosage.

The following list tells you the commercial names of antiseizure medications if you know them by their generic names. After this list, specific information about each drug is given, with the drugs arranged alphabetically by their commercial names.






Tegretol (also Atretol, Epitol, Tegretol-XR)












Phenobarbital (also Luminal, Solfoton)

phenytoin sodium




valproic acid

Depakene, Depakote

Depakene (dep-UH-keen); Depakote (dep-UH-coat)

Also called: Valproic acid.

How given: Tablets, taken with food if stomach irritation occurs.

Precaution: Liver damage is a possible risk of taking this medication. If you develop yellowing of the skin and eyes, loss of appetite, dizziness, drowsiness, weakness, and a general feeling of ill health, contact your doctor immediately.

The one side effect I had while taking Depakote is that I was losing my hair left and right. I was taking eight 500 mg tablets a day--at one time! But now I'm down to taking only two tablets a day and I'm not losing as much hair.

•  •  •   •  •  

Depakote made Chris tired and moody. He gained a lot of weight as he ate more. He was so scrawny that this aspect was good. He's on Zarontin now, which seems to be much better--no side effects that we've noticed.

Diamox (DYE-uh-mocks)

Also called: Acetazolamide.

How given: Tablets or capsules, taken orally.

Precaution: Diamox is a sulfur-based medication that can sometimes cause an allergic reaction, including development of a rash, bruises, sore throat, or fever. If these symptoms occur, continue taking your medication as prescribed and contact your doctor immediately.

Dilantin (dye-LAN-tin)

Also called: Phenytoin sodium.

How given: Tablets, capsules, or syrup taken orally.

Precaution: If you have been taking Dilantin on a regular basis, you should not stop taking this medication abruptly. Doing so can initiate a condition called status epilepticus--repeated or prolonged seizures with no recovery of consciousness between them. If not treated promptly, status epilepticus can be fatal. Another possible side effect of Dilantin is an overgrowth of gum tissues (known as gum hyperplasia).

The only antiseizure medication that gave me adverse side effects was Dilantin. Dilantin was the first seizure medicine I was on and it made my gums bleed. My dentist ordered that I be taken off it immediately.

Klonopin (KLON-uh-pin)

Also called: Clonazepam.

How given: Tablets taken orally.

Lamictal (LAM-ic-tal)

Also called: Lamotrigine.

How given: Tablets taken orally.

Precaution: A rash may begin to form within the first 4 to 6 weeks of taking Lamictal, especially if taken in combination with Depakene. You should notify your doctor immediately if you begin to develop a rash.

Mysoline (MY-soh-leen)

Also called: Primidone.

How given: Tablets or syrup taken orally.

Precaution: Mysoline should not be taken if you are allergic to phenobarbital or if you have porphyria, a rare metabolic disorder that breaks down the red blood pigment hemoglobin.

Neurontin (NUHR-on-tin)

Also called: Gabapentin.

How given: Capsules taken orally.

Phenobarbital (fee-no-BAR-bi-tal)

Also called: Luminal, Solfoton.

How given: Tablets taken orally, or injection.

Precaution: Phenobarbital is a barbiturate, and can be addictive. Your body may become tolerant of the medication, requiring more of the drug to accomplish the same effect.

The way I reacted to the phenobarbital was just the opposite of how one is supposed to react to it. Instead of it calming me down, it made me really hyper.

•  •  •   •  •  

I was on phenobarbital from the time I was one week old until three or four years ago. The main side effect I had while on phenobarbital was drowsiness and a lack of concentration. As my body became accustomed to the dosage, those side effects wore off. During that time ( from age 10 to 19), I had noticed an increased body odor. It didn't matter how much deodorant I wore, it was never enough to rid myself of the odor caused by the phenobarbital.

Tegretol (TEG-re-tawl)

Also called: Carbamazepine; Atretol, Epitol, Tegretol-XR.

How given: Tablets or syrup taken orally with food.

Precautions: Tegretol should never be taken on an empty stomach. Tegretol increases the risk of liver and kidney disorders. Symptoms include fever, sore throat, dry mouth, reddish or purplish spots on the skin, and bruises. If any of these symptoms appear, contact your doctor immediately.

I was placed on Tegretol for a few years. Slowly but surely it adversely affected me. One Saturday we were at a large mall and I started walking like a drunk and started showing the first signs of a shunt malfunction.

Later that day, my husband convinced me to go to the emergency room. By the time they got around to doing an MRI and a real live doctor came to see me, the medication had worn off and I was doing a lot better. However, my neurosurgeon would not let me quit taking the medication--which both my husband and I knew was the cause of all the problems.

While on Tegretol, I got lost (more than usual). I couldn't concentrate, I had bad headaches, nausea--you name the side effect, I had it. My neurosurgeon finally switched me to Depakote, and all the bad things went away.

I have no ill effects (although I know it is very hard on your liver, so my blood is checked every three months). The one thing I have noticed is that it helps with the partial seizures and keeps my mind intact. I just wish it could help me regain some of my short-term memory.

Valium (VAL-ee-um)

Also called: Diazepam.

How given: Tablets taken orally.

Precaution: Valium is addictive. When taken as an antiseizure medication, Valium must be taken at the same time every day.

Zarontin (zar-ON-tin)

Also called: Ethosuximide.

How given: Capsules or syrup, taken orally.


Surgery is reserved for unusually severe seizures that do not respond to medication. On occasion, seizures may be caused by a tumor or cyst. In those instances, surgery would be performed to remove the mass. Once treated, the patient will be closely monitored following surgery to see if removal of the mass has stopped the seizures from occurring.

Other surgical procedures are used as a last resort for treating seizures that are not responsive to drugs. For example, temporal resection surgery removes a portion of the temporal lobe to treat patients who have focal seizures (seizures restricted to a particular region of the brain).

First aid for seizures

Most people don't know what to do to help when someone near them has a seizure. The myth that someone having a seizure may "swallow his tongue" is physically impossible. Because of this myth, people tend to do more harm than good by trying to force something in the mouth of the person having a seizure to hold his tongue down.

The following are some dos and don'ts for helping a person who is having seizures. (You might want to photocopy this list for people who are likely to be nearby when a seizure occurs, such as neighbors or baby-sitters.)

What you should do
  • If you do not know the medical history of the person having the seizure, check for an emergency medical identification bracelet or necklace.
  • If you know the person and know they haven't had seizures before, send someone to call for emergency medical assistance (911).
  • Make note of the time the seizure begins and how long it lasts. This information should be given to emergency medical professionals or the person's doctor.
  • Try to protect the person from falling down if he loses consciousness. When he first starts to notice the aura, have the person lie or sit down on the floor in an area that is safe.
  • Move any hard or sharp objects away from the person having the seizure.
  • Surround the person with pillows, blankets, or cushions, if available. If possible, try to place some type of padding beneath the person's head to protect him from injury.
  • Try to loosen any tight clothing the person may be wearing, including belts, ties, and shirt collars.
What you shouldn't do
  • Do not attempt to place anything between the person's teeth or in his mouth during the seizure--especially your fingers or anything metallic. The person having the seizure might clench his teeth or bite down unexpectedly, causing harm not only to himself, but to you as well.
  • Don't hold the person down or try to restrain him during the seizure. This could place both you and the person having the seizure at risk of injury.
  • Do not attempt to move the person, unless he is near something immovable that could cause harm or injury to him.
  • Do not yell at or get angry with the person having the seizure. Understand that he has no control over what his body is doing; getting upset with him will only make him feel worse afterward.
When to call for help

Since most seizures last for only one to two minutes, it isn't necessary to call for emergency medical services (EMS) personnel immediately. However, if the seizure lasts more than a few minutes, or if the person has one seizure after another, you should send someone to call EMS (911 in most states and provinces) immediately.

You should also call EMS:

  • If the person has been injured.
  • If the person is pregnant or suspected to be pregnant.
  • If the person has diabetes.
  • If the person is an infant or child.
  • If the person fails to resume consciousness following the seizure.

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