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Frequently Asked Questions
We aim to provide comprehensive care and education to our valued patients and the community.
Here are the answers to some of the most common questions we receive.
What is epilepsy?
Epilepsy is a seizure disorder. It is not a psychological disorder nor a disease and it is not contagious. The brain is made up of billions of nerve cells or neurons that communicate through electrical and chemical signals. When there is a sudden excessive electrical discharge that disrupts the normal activity of the nerve cells, a seizure may result.
Seizures cause a change in function or behavior. A seizure may take many different forms including a blank stare, muscle spasms, uncontrolled movements, altered awareness, odd sensations, or a convulsion. The location in the brain of the abnormally discharging nerve cells determines the form the seizure will take. Seizures may occur rarely or as often as numerous times a day. If the condition is successfully controlled by medication, a person may be seizure free.
Epilepsy is one of the most common chronic neurological disorders. An estimated 50 million people worldwide have epilepsy. That means approximately one percent of the general population has epilepsy.
Epilepsy can be present at any age although its onset is most often in childhood or in the later years of life. Sometimes those who develop seizures during childhood outgrow their seizures. In the elderly, there is an increased incidence due to strokes and aging of the brain. In more than half of those with epilepsy, seizures can be well controlled with seizure medication.
What is a seizure?
The brain is made up of billions of cells called neurons which communicate by sending electrical messages. Brain activity is a rhythmic process characterized by groups of neurons communicating with other groups of neurons. During a seizure, large groups of brain cells send messages simultaneously (known as “hypersynchrony”) which temporarily disrupts normal brain function in the regions where the seizure activity is occurring. Seizures can cause temporary changes or impairments in a wide range of functions. Any function that the brain has can potentially be affected by a seizure, such as behaviour, sensory perception (vision, hearing, taste, touch, smell), attention, movement, emotion, language function, posture, memory, alertness, and/or consciousness. Not all seizures are the same. Some seizures may only affect one or two discrete functions, other seizures affect a wide range of brain functions.
Most people associate a seizure with a loss of consciousness and rhythmic jerking movements. Some seizures do cause convulsive body movements and a loss of consciousness, but not all. There are many different kinds of seizures. A temporary uncontrollable twitching of a body part could be due to a seizure. A sudden, brief change in feeling or a strange sensation could be due to a seizure.
Most seizures are brief events that last from several seconds to a couple of minutes and normal brain function will return after the seizure ends. Recovery time following a seizure will vary. Sometimes recovery is immediate as soon as the seizure is over. Other types of seizures are associated with an initial period of confusion afterwards. Following some types of seizures there may be a more prolonged period of fatigue and/or mood changes.
*Reference: Epilepsy Ontario
What causes epilepsy?
Epilepsy is a term used to describe many different neurological disorders that all have a common feature, an increased risk of having seizures.
Just as there are many different types of epilepsy there are many different causes too, which include:
- a brain injury or damage to the brain
Anything that can injure the brain is a potential cause of epilepsy including: head trauma; stroke; brain injury during birth; neurodegenerative diseases; brain tumours; and many others. Epilepsy may begin weeks, months or years after an injury to the brain.
- structural abnormalities that arise during brain development
Sometimes these structural changes in the brain are visible on a brain scan (such as a MRI), other times there could be subtle changes in brain structure that are not easy to detect with current imaging techniques. Epilepsy due to a structural abnormality may begin early in life, during adolescence or in adulthood.
- genetic factors
Some genetic causes of epilepsy are inherited and there may be other family members with epilepsy, while other genetic factors that cause epilepsy occur at random.
- a combination of two or more of the above factors
For many people with epilepsy, the cause of their seizures is unknown. It is hoped that research and new developments in diagnostic testing will provide more answers for people with epilepsy and their families.
*Reference: Epilepsy Ontario
Aren't I too old to be getting epilepsy?
Partial (focal) seizures: Partial (focal) seizures refer to seizures beginning in one area of the brain. By observing which area of the body is affected by the seizure, physicians can identify where in the brain the seizure occurred.
Tonic-clonic seizures (formerly known as grand mal seizures) can be one of the most frightening seizures to observe. There are two parts to a tonic-clonic seizure:
- Tonic phase – The person initially stiffens and loses consciousness, causing them to fall to the ground. The person’s eyes roll back into their head as the muscles (including those in the chest, arms and legs) contract and the back arches. As the chest muscles tighten, it becomes harder for the person to breathe – the lips and face may take on a bluish hue, and the person may begin to make gargling noises.Many observers have the misconception that the person is in danger of “swallowing their tongue,” so they attempt to put something in the person’s mouth. Swallowing your tongue is actually impossible, and any attempt to open the now tightly clenched jaw may cause more harm than good. The tonic phase will typically last no longer than a minute.
- Clonic phase – Typically following the tonic phase, the clonic phase will start as the muscles begin to spasm and jerk. The elbows, legs and head will flex then relax rapidly at first, but the frequency of the spasms will gradually subside until they cease altogether. As the jerking stops, it is common for the person to let out a deep sigh, after which normal breathing resumes. The clonic phase will rarely last longer than a few minutes.
As the person transitions from the clonic phase to the post-seizure period, they’ll likely remain unconscious for a few minutes or more, depending on the severity of the seizure. During this time (known as the postictal period), the brain is extremely active trying to stop the cells from firing to bring the seizure under control. When the person wakes up, they may have sore muscles and be tired or confused. The observer’s best course of action is to be assuring and supportive.
Occasionally, it is possible to experience the tonic phase without the clonic phase and vice versa.
*Reference: Hopkins Medicine
How can I have epilepsy if my EEG is normal?
A normal EEG does not mean that you did not have a seizure. Approximately one-half of all EEGs done for patients with seizures are interpreted as normal. Even someone who has seizures every week can have a normal EEG test. This is because the EEG only shows brain activity during the time of the test. If you aren’t having a seizure at that time, there may not be any unusual brain waves for the test to record.
During a seizure, the electrical activity is abnormal. Once the seizure is over, the brain rapidly returns to normal in most individuals. When an EEG is done several hours or even days later, it misses the changes in electrical activity that occurred during the actual seizure.
The likelihood of recording a seizure during a routine EEG is small. The EEG generally records brain waves between seizures, called interictal brain waves. These waves may or may not show evidence of seizure activity. The neurologist looks for spikes or sharp waves (“epilepsy waves”) to confirm the diagnosis, but the absence of these abnormal brain waves does not mean you didn’t have a seizure in the past.
Specific techniques, like flashing lights or 2 to 5 minutes of deep breathing (hyperventilation), often are used to provoke abnormal brain waves so they can be recorded. Recording the “epilepsy waves” is helpful because it confirms the diagnosis and may identify the type of seizure disorder, but it is not necessary for diagnosis and treatment.
Do I need to get another MRI?
- You developed epilepsy before you were 2 years old
- You developed epilepsy when you were a child or an adult and there’s a chance it is caused by some damage to your brain
- You are still having seizures even though you are taking epilepsy medicines
How do I know if my medication is causing side effects?
Seizure medicines may cause unwanted side effects in some people. Most of the time, the effects are mild and don’t last long. Often they can be treated by adjusting the dose or how a person takes it.
Some common side effects that may occur in the first few weeks of taking seizure medicines include: feeling tired, stomach upset or discomfort, dizziness, or blurred vision.
Some of these may not occur or are tolerated okay if the medication is started at a low dose and increased slowly. They often will go away over several weeks or months.
Different seizure medicines tend to produce different types of side effects. To find out what effects are most common with your medication, ask your doctor or pharmacist.
Just because a certain effect is common with your medication, does not mean that it will happen to you. Many people have few or no problems with side effects.
Contact your doctor immediately if a rash or troublesome itchiness develops after a new medication is started. Drug rashes usually begin 5 to 18 days after a medication is started. If you are taking more than one medication, the one that was started most recently has probably caused the rash. Rashes may also be caused by other reasons and may not be due to medicines at all. You should see your primary care doctor to look for other medical problems. Most rashes are minor and usually go away quickly if the medication is stopped. Make sure you always tell your doctor right away if a rash begins, because occasionally they can be very serious.
Tell a doctor immediately if you experience any of the following:
- Sores, blisters, or ulcers in your mouth
- Blisters on the skin
- Excessive bleeding or bleeding won’t stop
- Stomach pain and tenderness
- Unusual infections
- Other unusual symptoms while taking a seizure medicine.
Can medical marijuana help to stop seizures?
When conventional treatments do not work, as is the case for roughly 30% of people with epilepsy, it is not unreasonable to consider cannabis. This is why some states have approved it for “compassionate access.” However, this should only be considered after a thorough evaluation at a specialized epilepsy center and once conventional treatments (pharmacologic and nonpharmacologic) have been reasonably tried.
The Epilepsy Foundation urges anyone exploring any treatment for their epilepsy, as permitted under their state law, to work with their treating physician to make the best decisions for their own care.
Evidence from laboratory studies, anecdotal reports, and small clinical studies from a number of years ago suggest that cannabidiol, a non-psychoactive compound of cannabis, could potentially be helpful in controlling seizures. Conducting studies can be difficult as researchers have limited access to marijuana due to federal regulations and even more limited access to cannabidiol; there are also increased financial and time constraints.
Open-label studies in the U.S. of Epidiolex (a drug derived from cannabidiol or CBD) are being performed. Epidiolex is a purified, 99% oil-based CBD extract from the cannabis plant and is produced by GW Pharmaceuticals to give known and consistent amounts in each dose. The U.S. Food and Drug Administration (FDA) has given some epilepsy centers permission to use this drug as “compassionate use” for a limited number of people at each center.
Recently, gold-standard studies (double-blind, placebo-controlled studies) have finished for difficult epilepsies such as Lennox-Gastaut syndrome (LGS) in children and adults and Dravet syndrome in children. Information from these studies has been presented at major scientific meetings and in press releases by GW Pharmaceuticals.
Results from 214 people who received Epidiolex (99% CBD) in an open-label study (without a placebo control) and who completed 12 weeks or more on the drug were published in Lancet Neurology1.
- People who received Epidiolex ranged from 2 to 26 years old with an average age of 11.
- All had epilepsy that did not respond to currently available treatments.
- During the study, seizures decreased by an average of 54%.
- People taking the anti-seizure medication clobazam (Onfi) seemed to have a better response when compared to those that were not on this medication.
In addition, two gold-standard studies using Epidiolex for LGS in children and adults and one with children who have Dravet syndrome showed promising results.
- Drop seizures were reduced in the two LGS studies by over 40% compared to less than 20% for people who got the placebo, which was statistically significant.
- In the Dravet study, approximately 40% reduction in convulsive seizures was noted compared to 17% reduction for the placebo group. Again, significance was found compared to the placebo group.
Other studies using Epidiolex in people with Tuberous Sclerosis are ongoing as well.
An Israeli study2 using a product that had 20 parts of CBD to 1 part of THC was performed in an open-label format for children up to age 18 years with hard to control epilepsy. A significant number of people reported seizure reduction with 7% stating seizures worsened.
Marijuana or cannabis in general has a number of effects depending on how it is ingested. For example, if smoked, the risk factors associated with smoking apply to marijuana.
Side effects of the preparations used to treat seizures have not been well documented in anecdotal reports as varying doses and strains have been used. Increased appetite and memory problems have been reported.
It is important that people know that even though marijuana is a plant, it is broken down in a person’s liver like many medicines. There is some misbelief that because it is a plant or oil from a plant, in the case of CBD, that marijuana is completely safe. However, medication interactions can occur that need further study.
Is this covered?
Patients who do not have any provincial coverage can be seen as well although there is a fee. If you have private insurance (ex student insurance) this can be reimbursed. Please contact us for details
Please note not all services are covered. There are fees for non-OHIP services which includes forms et. Please contact us for details.
Why is my license suspended and how can I get it back?
The information I usually tell my patients is that (at least in Ontario), they may not be able to drive for 3 months if it was a provoked seizure. If there is “structural” cause such as a stroke, bleed or tumour this would delay getting your license until 6 months have passed.
The same is true once we establish a diagnosis of epilepsy; that is a predisposition to having seizures and not just a one time event. So patients who any form of epilepsy need to wait 6 months since their last seizure to be able to apply for their license.
It becomes more complicated with other types of seizures. For example, patients with auras can drive if they have had auras occurring but the frequency is stable for > 1 year. This is assuming they don’t have auras in which they have head turning.
Similarly, those patients who have only seizures at night can get their license while still having seizures as long as their seizure frequency remains same and seizures only occurring at night.
Please speak to your doctor about this. Unfortunately each province has different regulations so please check your local ministry of transportation. Finally, the above is only for non commercial drivers (“G”) and becomes more stricter with truck licenses such as A or Z.
Are drug levels necessary?
The first thing to consider is does this drug have a level, and if so, is it readily available. Most of the new drugs do not have readily available levels or ones covered by OHIP.
The second thing to consider is the timing of the test. Often patients may have elevated levels because they did blood work soon after taking the medication. While there is a belief that the levels are adjusted by the lab this is not so. This is why we always ask to do the blood work before morning blood work or many hours after taking the last dose (ie on a twice per day dosing, to do blood work at end of day).
The third factor to consider is how many medications are taken at the same time and how they interact with each other. So for example. most of the older medications are transported on a protein called Albumin. So if someone is taking several medications bound to albumin we may not be measuring the actual level correctly. In other cases such as phenytoin, we have to measure albumin together since in this case you can correct for the levels if the albumin levels are low.
The times when levels are necessary can be summarized as follows
1) If the patient has a seizure and the levels were low (example, phenytoin, valproic acid), then we can increase it
2) If the patient has side effects (example double vision or unsteadiness) and their levels are high then we can decrease it
3) I sometimes order levels during pregnancy (ex lamotrigine) since the estrogen levels rising reduce lamotrigine levels, so we can compensate to reduce chance of seizure
4) if we are unsure how the patient is absorbing medication
The challenge we have seen is if the patient is seizure free and without side effects but the levels are slightly low; similarly , if the levels are slightly high but there are no side effects and the patient is seizure free (maybe it was taken soon after the patient took medication)
QUEENSWAY PROFESSIONAL CENTRE
SOUTHERN ONTARIO EPILEPSY CLINIC (SOEC)
190 Sherway Drive
TEL: 416-620-SOEC (7632)
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Neurologist / Epileptologist with special interest in diet therapy / Ketogenic diet in adults with refractory epilepsy - tweets are my own
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This website was made possible by unrestricted educational grants from several pharmaceutical companies including UCB and Sunovion. The views expressed herein are the independent views of Dr. Bercovici and the Southern Ontario Epilepsy Clinic and were formulated without the influence of any external partner.
SOUTHERN ONTARIO EPILEPSY CLINIC
QUEENSWAY PROFESSIONAL CENTRE
190 SHERWAY DRIVE, SUITE #308
TORONTO, ONTARIO M9C 5N2
TEL: 416-620-SOEC (7632)