Epilepsy/RARE brain

   Seizure*disclaimer*

videos submitted and used for this page can be upsetting to some.

Seizure Types

In March 2017 the International League Against Epilepsy (ILAE), a group of the world’s leading epilepsy professionals, introduced a new method to group seizures. This gives doctors a more accurate way to describe a person’s seizures and helps them to prescribe the most appropriate treatments.

Seizures are divided into groups depending on:

  • where they start in the brain (onset)
  • whether or not a person’s awareness is affected
  • whether or not seizures involve other symptoms, such as movement

Depending on where they start, seizures are described as being focal onset, generalized onset, or unknown onset.

Focal onset seizures

Focal onset seizures start in, and affect, just one part of the brain, sometimes called the ‘focus’ of the seizures. It might affect a large part of one hemisphere or just a small area in one of the lobes.

Sometimes a focal onset seizure can spread to both sides of the brain (called a focal to bilateral tonic-clonic seizure). The focal onset seizure is then a warning, sometimes called an ‘aura’ that another seizure will happen.

 

Levels of awareness

Seizures are also described depending on a person’s level of awareness during their seizures; this means whether or not they are aware of the seizure and what is happening around them. These seizures are known as focal aware seizures or focal impaired awareness seizures.

Focal aware seizures (previously called simple partial seizures)

In focal aware seizures (FAS) the person is conscious (aware and alert), will usually know that something is happening and will remember the seizure afterwards.

Some people find their focal aware seizures hard to put into words. During the seizure they may feel ‘strange’ but not be able to describe the feeling afterwards. This may be upsetting or frustrating for them.

Focal impaired awareness seizures (previously called complex partial seizures)

Focal impaired awareness seizures (FIAS) affect a bigger part of one hemisphere (side) of the brain than focal aware seizures.

The person’s consciousness is affected and they may be confused. They might be able to hear you, but not fully understand what you say or be able to respond to you. They may not react as they would normally. If you speak loudly to them, they may think you are being aggressive and so they may react aggressively towards you. FIAS often happen in the temporal lobes but can happen in other parts of the brain.

After the seizure, the person may be confused for a while, sometimes called ‘post-ictal’ (after-seizure) confusion. It may be hard to tell when the seizure has ended. The person might be tired, and want to rest. They may not remember the seizure afterwards.

Focal impaired awareness seizures

Find out more information on focal impaired awareness seizures and watch our video showing you what someone goes through when they have this seizure.

What happens during focal seizures?

What happens during focal aware and focal impaired awareness seizures depends on where in the brain the seizure happens and what that part of the brain normally does.

Some focal seizures involve movements, called motor symptoms and some involve unusual feelings or sensations called, non-motor symptoms.

Motor symptoms can include:

  • making lip-smacking or chewing movements,
  • repeatedly picking up objects or pulling at clothes;
  • suddenly losing muscle tone and limbs going limp or floppy, or limbs suddenly becoming stiff;
  • repetitive jerking movements that affect one or both sides of the body;
  • making a loud cry or scream; or
  • making strange postures or repetitive movements such as cycling or kicking.

Non-motor symptoms can include:

  • changes or a ‘rising’ feeling in the stomach or déjà vu (feeling like you’ve ‘been here before’);
  • getting an unusual smell or taste;
  • a sudden intense feeling of fear or joy;
  • a strange feeling like a ‘wave’ going through the head;
  • stiffness or twitching in part of the body, (such as an arm or hand);
  • a feeling of numbness or tingling;
  • a sensation that an arm or leg feels bigger or smaller than it actually is; or
  • visual disturbances such as coloured or flashing lights or hallucinations (seeing something that isn’t actually there).

Sometimes focal seizures spread from one side (hemisphere) to both sides of the brain. This is called a focal to bilateral tonic-clonic seizure.

Focal to bilateral tonic-clonic seizure (previously called a secondarily generalised seizure)

When this happens the person becomes unconscious and will usually have a tonic clonic (‘convulsive’ or shaking) seizure. If this happens very quickly, they may not be aware that it started as a focal seizure.

Generalised onset seizures

Generalised onset seizures affect both sides of the brain at once and happen without warning.

The person will be unconscious (except in myoclonic seizures), even if just for a few seconds and afterwards will not remember what happened during the seizure.

Tonic clonic seizures

These are the seizures that most people think of as epilepsy.

At the start of the seizure:

  • the person becomes unconscious
  • their body goes stiff and if they are standing up they usually fall backwards.
  • they may cry out
  • they may bite their tongue or cheek.

During the seizure:

  • they jerk and shake as their muscles relax and tighten rhythmically
  • their breathing might be affected and become difficult or sound noisy
  • their skin may change colour and become very pale or bluish
  • they may wet themselves

After the seizure (once the jerking stops):

  • their breathing and colour return to normal
  • they may feel tired, confused, have a headache or want to sleep.

Watch someone having a tonic clonic seizure

Find out more information on tonic clonic seizures and watch our video showing you what someone goes through when they have this seizure.

Clonic seizures

Clonic seizures involve repeated rhythmical jerking movements of one side or part of the body or both sides (the whole body) depending on where the seizure starts.

Seizures can start in one part of the brain (called focal motor) or affect both sides of the brain (called generalised clonic).

Tonic and atonic seizures

In a tonic seizure the person’s muscles suddenly become stiff. If they are standing they often fall, usually backwards, and may injure the back of their head. Tonic seizures tend to be very brief and happen without warning.

In an atonic seizure (or ‘drop attack’) the person’s muscles suddenly relax, and they become floppy. If they are standing they often fall, usually forwards, and may injure the front of their head or face. Like tonic seizures, atonic seizures tend to be brief and happen  without warning. With both tonic and atonic seizures people usually recover quickly, apart from possible injuries.

Watch someone having an atonic seizure

Find out more information about atonic seizures and watch our video showing you what someone goes through when they have this seizure.

Myoclonic seizures

Myoclonic means ‘muscle jerk’. Muscle jerks are not always due to epilepsy (for example, some people have them as they fall asleep).

Myoclonic seizures are brief but can happen in clusters (many happening close together in time), and often happen shortly after waking.

In myoclonic seizures the person is conscious, but they are classified as generalised seizures. This is because the person is likely to have other seizures (such as tonic clonic seizures) as well as myoclonic seizures.

Watch someone having a myoclonic seizure

Find out more information about myoclonic seizures and watch our video showing you what someone goes through when they have this seizure.

Absence seizures

Absence seizures (previously called petit-mal)  are more common in children than in adults, and can happen very frequently.

Typical absences

During a typical absence the person becomes blank and unresponsive for a few seconds. They may appear to be ‘daydreaming’. The seizures may not be noticed because they are brief.

The person may stop what they are doing, look blank and stare, or their eyelids might blink or flutter. They will not respond to what is happening around them. If they are walking they may carry on walking, but will not be aware of what they are doing.

Atypical absences

Atypical absences are similar to typical absences (see above) but they start and end more slowly, and last a bit longer than typical absences. As they also include a change in muscle tone, where the limbs go limp or floppy, some people may fall.

The article cited by the epilepsy society of UK

Types of seizures

Drug interaction and cannabis treatment

It is suggested to wait two hours between pharmaceutical drugs and cannabis medication

We feel this information deserves reading if you or your ones are considering alternative treatments.

https://www.neurologyadvisor.com/aes-2016-coverage/significant-drug-drug-interactions-with-cannabidiol-and-aeds/article/577194/

https://www.epilepsy.com/connect/forums/living-epilepsy-youth/keppra-and-marijuana

https://www.epilepsy.com/connect/forums/living-epilepsy-youth/mixing-keppra-and-cannabis-does-cause-lsd-hallucinations-or-it

https://www.drugs.com/drug-interactions/cannabis-with-keppra-2758-0-1448-858.html

Due to the fact that in cases of rare malformations,there are missing/damaged areas of the brain. Seizures can play a huge role in children’s and adults lives. Managing seizures on top of the multitude of other issues associated with rare neurological conditions can become a very hard task and can go on for years or the child or young adults entire lifetime.

Many children are on 1 to 4 medications if not more to help with uncontrollable seizing many to choose to try VNS implants to stop seizure activity. this has shown both unsuccessful in some and successful for others.  In some cases, children cannot be controlled and they will have surgical procedures removing the isolated areas that are causing disruptions. Schizencephaly/rare malformation seizures vary from day today.

A temporal lobe resection is a surgery performed on the brain to control seizures. In this procedure, brain tissue in the temporal lobe is resected, or cut away, to remove the seizure focus. The anterior (front) and mesial (deep middle) portions of the temporal lobe are the areas most often involved.

There are currently several case studies showing cannabis is improving bone density, seizure activity, digestion and cognitive ability.

http://www.epilepsy.com/connect/forums/new-epilepsycom/schizencephaly

https://www.ncbi.nlm.nih.gov/pubmed/16970881

https://www.epilepsydiagnosis.org/aetiology/schizencephaly-overview.html

http://www.physio-pedia.com/Schizencephaly

 

 

Clonic– many people with Schizencephaly have these. similar to Absent.

Absent– also known as focal. staring into space

grand mal – this seizure consists of complete muscle atrophy and intense shaking

Drop – youths and young adults with these types of seizures have experiences 7 to 10-minute precursors before then just drop

Limbic-Gelastic ( this type of seizure is one that mimics laughing or intense fear. )

 Cluster– several types or one type one after another

 

https://www.epilepsy.com/ 

for further information on specific seizures and treatment

 

Refractory seizures

Epilepsy is one of the most common serious neurological conditions, and 30 to 40% of people with epilepsy have seizures that are not controlled by medication. Patients are considered to have refractory epilepsy if disabling seizures continue despite appropriate trials of two antiseizure drugs, either alone or in combination. At this point, patients should be referred to multidisciplinary epilepsy centers that perform specialized diagnostic testing to first determine whether they are, in fact, pharmacoresistant, and then, if so, offer alternative treatments. Apparent pharmacoresistance can result from a variety of situations, including noncompliance, seizures that are not epileptic, misdiagnosis of the seizure type or epilepsy syndrome, inappropriate use of medication, and lifestyle issues. For patients who are pharmacoresistant, surgical treatment offers the best opportunity for complete freedom from seizures. Surgically remediable epilepsy syndromes have been identified, but patients with more complicated epilepsy can also benefit from surgical treatment and require more specialized evaluation, including intracranial EEG monitoring. For patients who are not surgical candidates, or who are unwilling to consider surgery, a variety of other alternative treatments can be considered, including peripheral or central neurostimulation, ketogenic diet, and complementary and alternative approaches. When such alternative treatments are not appropriate or effective, quality of life can still be greatly improved by the psychological and social support services offered by multidisciplinary epilepsy centers. A major obstacle remains the fact that only a small proportion of patients with refractory epilepsy are referred for expert evaluation and treatment.

Refractory seizures

 

Cannabis for treatment

Childhood epilepsy may be coarsely divided into (1) a large group (70%) of benign epileptic syndromes and easily controlled symptomatic epilepsies, and (2) a smaller but significant group of drug-resistant epilepsies which includes idiopathic and genetic epileptic encephalopathies and various symptomatic acquired epilepsies. The burden of intractable epilepsy on infants and children and their families is enormous, and in addition to the risks carried by the actual seizures it significantly affects the children’s development and quality of life. Most of these children are on polytherapy, which has its own consequences. This devastating situation has led to a quest for additional solutions. This quest, with regard to the use of cannabis, has been led by parents and caretakers in parallel to the medical authorities.

Various ancient cultures have mentioned cannabis as a useful tool to treat epileptic convulsions. There are historical records from ancient China dating back to 2700 BC and tablets written by the Sumerian and Akkadian peoples in 1800 BC, as well as other ancient historical records. In the nineteenth century several leading physicians published papers on its use as an anticonvulsant, presenting both case reports and their general impression on its effectiveness when added to bromides.

Despite the Marijuana Tax Act of 1937, which led to the removal of cannabis from the US pharmacopeia in 1941, and its classification as a schedule 1 substance, several researchers and physicians renewed investigation on the biological effects and medicinal use of its various components in the 1970s. Several animal studies and small-scale clinical trials examined its use. Studies focusing mainly on purified cannabidiol (CBD) in epilepsy management in drug-resistant patients were published. The above clinical studies were assessed in a 2012 Cochrane review stating that the trials were based on small samples with inconsistent products, dosages, dose frequencies, and treatment durations. These deficiencies led the Cochrane reviewers to conclude that CBD efficacy in the treatment of epilepsy could not be confirmed, but that a dosage within the range 200–300 mg daily was safe enough to be given over a short time period.

In the last decade social media, patient and family advocacy groups, and Internet activity have led to significant public interest in cannabis as an alternative treatment for those living with epilepsy. This public demand revived both basic and clinical research into cannabis and CBD use for epilepsy treatment particularly in the pediatric population. This review provides an overview and discussion of the current data relating to artisanal cannabis and pure CBD use in epilepsy.

cannabis and epilepsy