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May 17, 2023


Risk of Seizures vs. Risk of Seizure Medications

What Are Seizures?

Seizures are episodes of unexpected, uncontrolled electrical activity in your brain. This leads to involuntary physical and mental changes. There are many different kinds of seizures. Some can present as large jerky movements and be dangerous for you to experience as you can hit your head or bite your tongue. Other seizures can be overlooked as they present more like unresponsiveness and can be mistaken for daydreaming. There is also a varying level of awareness during a seizure. Sometimes you may be aware of your surroundings throughout the event, while others may cause you to be unaware and only come back to attention after the seizure has gone.

What is Epilepsy?

Epilepsy is a condition diagnosed when an individual experiences two or more seizures. Importantly, the seizures cannot have been caused by any external cause, such as other medical conditions or substances. Medications are very effective at preventing seizures, and therefore those with epilepsy are typically on antiepileptic medications for the rest of their lives.

Read our blog Lifestyle Modifications for Epilepsy

Risks of Uncontrolled Seizures

Short-term risks

  • Falls
    If you are standing when a seizure occurs, the loss of muscle control will likely cause you to fall. This can be dangerous even on stable ground if you hit your head or land in an unfavourable position. A fall can be even more of a threat if you are standing somewhere already risky, such as at the top of the stairs or participating in sporting activities such as skiing or working out at the gym.
  • Burns
    It is dangerous to be near a hot stove or a fire, even as small as a lit cigarette, and for a seizure to occur. This is because you could experience severe burns or destruction of belongings and property if the fire were to be touched or knocked over during the seizure.
  • Vehicle Accidents
    Driving is very dangerous if you experience uncontrolled seizures. Losing control of the wheel during a motor vehicle accident can lead to very serious consequences including severe injury or even death of yourself, others in your car, and other people using the road or sidewalks.
  • Drowning
    If you experience a seizure near a body of water, you may be at risk of falling and drowning during the seizure. This is also a risk if you are drinking or eating something liquid as a seizure occur, as you would no longer be in full control of your muscles and therefore could inhale any liquid in your environment.

Long-term risks

  • Brain changes
    There are many studies that have linked seizures to long-term damage to the brain. The uncontrolled electrical activity can potentially lead to a change of signaling pathways or a loss of cells in certain parts of the brain. This can cause or worsen brain dysfunction. Specifically, this can be in terms of a decline in memory, attention, and can even lead to mental health conditions such as depression and anxiety.
  • Lifestyle changes and relationship issues
    Due to the risks involved when a seizure is to occur, many people with epilepsy live with fear that they may have another seizure. This often leads to lifestyle changes, such as a fear of driving, swimming, or even fear of being around young children in case a seizure were to injure them. This can greatly impact one’s quality of life, and even lead to problems maintaining romantic and friendly relationships.
  • Status epilepticus
    Status epilepticus is a very dangerous condition in which either 1) a single seizure occurs and lasts for longer than 5 consecutive minutes, or 2) you have multiple seizures within 5 minutes, without recovery between seizures. This is very dangerous, as seizures that last this long can lead to permanent changes to your brain or even to death. While status epilepticus can also be caused by other health conditions (low blood sugar or stroke), it can also be caused by poorly controlled epilepsy.
  • Sudden unexplained death in epilepsy (SUDEP)
    SUDEP is exactly as it sounds, a sudden death that occurs in those with epilepsy but without any concrete explanation. Though there is often (but not always) proof of a seizure occurring prior to the death, there is no evidence of drowning, physical trauma, status epilepticus, or other external causes. While the actual cause of death is not known, it is thought to be due to disruption to breathing, change in heart rhythm, or potentially both. One of the main risk for developing SUDEP includes those that experience frequent uncontrolled seizures.

Due to these very serious risks involved with uncontrolled seizures, there is inherent danger and an overall decline in quality of life of those with poorly controlled epilepsy. This is why is it essential for people with epilepsy to be medicated in order to prevent seizures from occurring and to maintain a healthy quality of life.

Short-Term Risks of Anti-Seizure Medications

Sometimes when you first start taking an anti-seizure medication, your body can react in a serious way. These specific reactions sometimes occur within a relatively short period of time following the initiation of a new medication. Depending on the severity of the reaction, cessation of the medication as well as other medical interventions are sometimes necessary in order to treat the specific condition.

It is also important to know that not all anti-seizure medications have the same risks. Some medications are more likely to lead to reactions than others, and additionally every individual reacts slightly differently to each drug.

Serious Skin Reactions

Two serious skin conditions that sometimes occur as reactions to anti-seizure (and other) medication are Stevens Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN). Both of these conditions begin with a fever and rash, but over time the affected skin will begin to form blisters and peel off. If left untreated, this can progress to complete peeling of your skin and be life-threatening.

SJS and TEN are usually considered to be two varying levels of severity of the same condition. Both are serious but it is considered SJS when it involves less than 10% of the body’s surface area, and TEN when over 30% of the skin is involved. The middle 10–30% is considered to be an overlap of the two conditions.

Because of the severity of these conditions, it is essential to seek medical attention if you experience fever or rash while taking anti-seizure medications.

Hypersensitivity Reactions

There is a condition called anticonvulsant hypersensitivity syndrome (AHS) that sometimes occurs following administration of anti-seizure medications. It is rare but can be fatal in 10–20% of cases, and it isn’t exactly known how or why this condition occurs. Minor reactions are more common, but the more severe manifestation of AHS is considered rare. In general, the condition is characterized by a set of symptoms, from most common to least common:

  1. Fever
  2. Rash
  3. Swollen lymph nodes
  4. Inflamed liver (hepatitis)
  5. Multiorgan involvement

If you experience rash or fever while taking an anti-seizure medication, seek medical attention.

Typically, this condition occurs within 2 weeks to 2 months of initiating a certain group of anti-seizure medications, such as lamotrigine, phenytoin, carbamazepine, and phenobarbital. This group of medications is called “aromatic antiepileptic drugs”, and anyone who has experienced AHS should not be prescribed any medication in this group.

Dangers of Anti-Seizure Medications for Pregnancy

Taking anti-seizure medication while pregnant increases the likelihood of birth defects including mental/behavioural or physical abnormalities. The abnormalities from these medications come in a wide range of severity, from cleft lip/palate to very serious neural tube defects.

The absolute risk of birth defects from the medications during pregnancy varies depending on the specific medication. For example, it seems like lamotrigine and lower doses of carbamazepine are less likely to cause abnormalities, while valproic acid and high doses of phenobarbital are much more likely to cause malformations (up to almost a 25% risk at high doses of valproic acid). However, this risk also has to be weighed against the dangers to yourself and your fetus of experiencing a seizure during your pregnancy.

It is essential to speak with your healthcare provider if you are taking anti-seizure medication and are pregnant or are planning to become pregnant. It can then be assessed which medication, if any, are best for you during your pregnancy.

Long Term Risks of Anti-Seizure Medications

Many reactions to anti-seizure medications occur within the first few weeks-to-months of initiation. However, some reactions occur after much longer of being on the medications.

Impact on Your Bones

There has also been an association studied between anti-seizure medications and bone disease. This is typically seen as decreased bone mineral density years following initiation of medication, which often progresses to osteoporosis and an increased risk of fractures. This is thought to be caused by the effect that certain medications have on bone metabolism.

These risks are thought to be strongest for certain medications, including phenytoin, carbamazepine, primidone, and phenobarbital. It is recommended by some healthcare providers to have bone mineral density checked every 2-5 years if you’re on a medication that puts you at risk.

Various Blood Disorders

There is a range of different blood disorders that occur as side effects of many anti-seizure medications. It is not clear why these disorders occur, but it’s likely due to the mechanism of action of the medications or as a result of a response from your immune system. The possible blood disorders include:

  • Thrombocytopenia
    This refers to when you have a low platelet count in your blood. This may lead to increased bleeding and/or an inability to stop bleeding once it has begun.
  • Neutropenia
    This refers to a condition in which you have a low neutrophil (immune cell) count. This leads to an increased risk of getting an infection and a harder time fighting it off.
  • Anemia
    Anemia, in general, refers to a low number of healthy red blood. It causes difficulty for your blood to circulate enough oxygen around your body, leading to tiredness, headaches, and other health complications.
  • Aplastic anemia
    This is a specific form of anemia in which the body is not making enough red blood cells.

Many healthcare providers recommend routine blood testing both before as well as throughout your time on anti-seizure medication.

Rarer Long-term Effects of Anti-Seizure Drugs

Gingival hypertrophy

This is condition in which the soft tissue in your mouth (gingiva) gets overgrown and become inflamed. It is a rare condition that occurs months after beginning anti-seizure treatment, and is most common with the medication phenytoin. Cessation of the medication is the best way to reverse this condition, but other treatments are also possible is phenytoin is the best possible medication for your epilepsy management.

Skin pigmentation

There have also been rare cases in which anti-seizure medications have caused skin discolouration. For example, phenytoin has been observed to cause a symmetrical brown pigmentation of your face and neck. Ezogabine, newer anti-seizure medication, has been associated with a bluish-grey pigmentation of the face, lips, and nails. This is also reversible with cessation of the medication.

Despite the fact that there are many risks involved with anti-seizure medications, it is still in the best interest of most individuals to manage epilepsy with medication. The risks of having a seizure and multiple seizures is much more dangerous than most medications. Additionally, is it usually possible to try multiple medications if one doesn’t work or has an intolerable adverse reaction.


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