Epilepsy update

Hi Folks today I’m here to give you an update on my seizures.

First of all let me say this is the first seizure of any kind in one week short of two months.

From my point of view given that my last seizure was on twenty eight of July when I had the petite mal seizure at 11.30am approximately, it came unexpectedly.

At first everything seemed ok after the seizure, until about 10 minutes later I got a what I call (embarrassing side effect) in the form of a bowel movement. Embarrassing in the sense that if you are in a public place and don’t know where the toilets are.

I usually have an idea what triggers my seizures, mostly it’s stress related, but this time I haven’t a clue what triggered it.

My seizures have been known to be more frequent, in fact I noticed during the first lockdown from Covid – 19 I was less stressed and if I remember right no seizures and that is still the case today.

So I reckon what was causing the increase in seizures was something I had to stop doing during Covid -19.

Nocturnal Seizures

Overview

An epileptic seizure is caused by unusual electrical activity in the brain. This usually causes to muscles of the body to tighten or weaken temporarily.

Nocturnal seizures happen when a person is sleeping. They are most common:

  • Right after falling asleep
  • Just before waking up
  • Soon after waking up

Any seizure can occur during sleep. However, there are certain seizure conditions that are more likely to experience nocturnal seizures, including:

Symptoms

Nocturnal seizures are often unnoticed because the patient is asleep when they happen. However, there are signs that may suggest the patient’s is experiencing these seizures, including:

  • Loss of bladder control
  • Biting their tongue

If the patient notices these symptoms of interrupted sleep they should talk to their doctor:

  • Difficulty concentrating
  • Awaking suddenly for an unknown reason
  • Feeling drowsy
  • Increase in daytime seizures triggered by a lack of sleep

Involuntary muscle movement linked to seizures can include:

  • Stiff arms
  • Stiff legs
  • Jerking body movements

Causes and Risk Factors

The cause of seizures is often unknown. However, there are certain seizure conditions that are more likely to experience nocturnal seizures, including:

Seizures can be linked to:

Diagnosis

The most useful way to diagnose the type of seizure is an electroencephalogram (EEG). This records electrical activity in the brain. The EEG can record unusual spikes or waves in electrical activity patterns. Different types of seizures can be identified with these patterns.

When a patient is experiencing nocturnal seizures, a sleep study is often needed to diagnose the condition. The sleep study will require the patient to stay overnight at the hospital where their brain activity can be monitored during their sleep.

Magnetic resonance imaging (MRI) and computed tomography (CT) scans may be used to look at where the seizures are happening in the brain. The scans can show scar tissue, tumors or structural problems in the brain.

Treatment

For many patients, correct treatment can lower or prevent seizures. In some cases, patients may not have any more seizures for the rest of their life.

Treatment is based on:

  • The type of seizure
  • Any underlying conditions
  • How often seizures happen
  • How severe the seizures are
  • The patient’s age
  • The patient’s overall health
  • The patient’s medical history

Anti-seizure (or anti-epileptic) medications can be very helpful. It may take a few tries to get the right medicine and dose. The doctor will watch for side effects to find the best treatment.

Surgery may be an option if medication can’t control the seizures. A vagus nerve stimulator (VNS) is sometimes implanted and used with anti-epileptic medication to lower seizures. The VNS is a tool placed under the skin of the chest. It sends electrical energy through the vagus nerve into the neck and up to the brain.

Certain lifestyle changes may also be used:

  • Special high-fat, low-carbohydrate diet (ketogenic diet)
  • Getting plenty of sleep
  • Avoiding certain triggers, such as lack of sleep

The staff at the Cedars-Sinai Epilepsy Program will work with each patient to determine the best treatment option.

Seizures & Nightmares

I don’t normally suffer from either of these during the night. last night I suffered 2-3 of them.

Normally when I have a nightmare I can usually remember it in the morning but I couldn’t remember what happened (if it was a nightmare) except for a brief moment of being awake in each case then falling asleep again.

If it were a siezure I only suffer from Focal Partial and Simple Partial which would normally occur during the day.

Finally I have to admit I have been under a bit of stress forr various and personal reasons

So were they Seizures or nightmares I took last night?

Please drop a comment in the box below

Ohtahara syndrome

This is a very rare epilepsy syndrome. Seizures start before 3 months of age. Many babies have an underlying structural brain abnormality or a metabolic (biochemical) disorder. This may be genetic in origin (passed on through the genes), or happen because of brain damage before or around the time of birth. A number of gene abnormalities, called mutations, may also cause Ohtahara syndrome. These include STXBP1, ARX, CDKL5 and PNKP. Other mutations will almost certainly be found in the future. However, no cause will be found in some infants. 

It is one of the group of severe epilepsy syndromes that start in the first year of life and are called the ‘Developmental and epileptic encephalopathies’.

This syndrome is quite similar to another developmental and epileptic encephalopathy called ‘Early myoclonic encephalopathy’.

Other names for Ohtahara syndrome

• Early infantile epileptic encephalopathy (EIEE) with burst-suppression

Symptoms

Seizures usually start in the first 7 to 10 days of life. Sometimes the mother may realise her baby was having seizures during the last couple of months of her pregnancy, when she sees her baby having seizures after birth.

Different types of seizures happen in this syndrome. The most common type is a tonic spasm where the baby suddenly has stiffening of the limbs, which last between 2 and 6 or more seconds. These tonic spasms may be quite subtle or quite severe. They are not the same as the epileptic spasms (infantile spasms) that occur in West syndrome. Children with Ohtahara syndrome also have focal (partial) motor seizures and myoclonic seizures with jerking of one limb, or one side of the body. These may last a few seconds to several minutes. Generalised seizures may happen later. After between 2 and 7 months, the seizure type may change to infantile spasms and the child may then develop West syndrome.

Diagnosis

A full account and description of what happens during the seizures is important for the doctors to make the diagnosis. It is always helpful if you can record a video of some of the seizures and show these to the hospital doctor.

The EEG test, which records the electrical activity in the brain, is always abnormal, showing evidence of abnormal discharges, or spikes and waves (the ‘burst’) alternating with periods of looking flat and featureless (‘suppression’). This type of record is referred to as ‘burst-suppression’ pattern. 

Epilepsy Action has more information on diagnosis.

Treatment

The seizures are often resistant to epilepsy medicines. The choice of medicine is difficult, but often some of the older medicines, such as phenobarbital, are tried first. Other medicines that may be effective include levetiracetam (Keppra), clobazam (Frisium), clonazepam (Rivotril), vigabatrin (Sabril) and zonisamide (zonegran). Other medicines such as pyridoxine and pyridoxal phosphate and a course of steroids called prednisolone may also be effective in a small number of children. Some babies with a focal (in one area only) structural brain abnormality seen on a magnetic resonance imaging (MRI) scan may be able to have epilepsy surgery to remove the abnormal area of brain. It may be possible to reduce the numbers of seizures if the baby is found to have a treatable metabolic (biochemical) disorder.

If your child has this syndrome it is very likely they will have prolonged or repeated seizures that continue over many minutes or even hours. Your child’s doctor will discuss a ‘rescue’ or emergency care plan with you to treat any prolonged or repeated seizures.

There may be research studies open that are relevant to this epilepsy syndrome. Your child’s doctor will be able to discuss this with you.

Information about treatments for children can be found on the Medicines for Children website.

Outlook

Affected babies do not behave normally. They are very floppy and excessively sleepy (described as an encephalopathy) and often have difficulty with feeding. With time they may develop stiffness (spasticity) in the limbs. They also make very little developmental progress and remain totally dependent. They often feed poorly. Sadly, they often die within the first two years of life, because of complications, including repeated chest infections. Those who do survive are usually severely disabled and will continue to have seizures despite treatment. Many babies go on to develop West syndrome, usually between 3 and 9 months of age.

Support

Contact
Charity for families of disabled children.
Freephone helpline: 0808 808 3555
Website: contact.org.uk
Email: helpline@contact.org.uk

Together for Short Lives
Helpline: 0808 8088 100
Website: togetherforshortlives.org.uk

What is a syndrome?

A syndrome is a group of signs and symptoms that, added together, suggest a particular medical condition. In epilepsy, examples of these signs and symptoms would be things like the age at which seizures begin, the type of seizures, whether the child is male or female and whether they have physical or learning disabilities, or both. The results of an electroencephalogram (EEG) are also used to help identify epilepsy syndromes.

If you would like to know more about an epilepsy syndrome, please speak to your doctor. If you would like to know more about epilepsy in general, please contact the Epilepsy Action Helpline.

Epilepsy & Bullying

Stigma and bullying

Stigma and bullying is common in epilepsy, often due to widespread misunderstanding about the condition. It can lead to the young person having low self-esteem and a reduction in motivation to engage with school learning and activities. The attitudes of their school, family and friends play an important role in the young person’s overall school experience and their wellbeing.

Many young people with epilepsy say they have encountered nastiness because of their condition. This can have a devastating impact on childhood, with many young people avoiding going to places where they might be the victim of ill-treatment.

Raising awareness of the basic facts about epilepsy will help to improve confidence, tolerance and inclusion as well as dispel unhelpful myths. Awareness raising should involve both pupils and school staff and can be done in a variety of ways, including:

  • Holding assemblies and lessons
  • Being alert to bullying
  • Developing ‘epilepsy-aware’ peer group
  • Arranging staff training

Schools need to ensure that awareness raising is handled sensitively and with the young person’s (and their parents’) support. Parents, charities and other outside agencies could contribute to the awareness raising activities.

Bullying is an additional stress to young people with epilepsy and stress is a common trigger for seizures. While many schools work hard to eliminate bullying, young people with epilepsy need to be recognised as particularly vulnerable.

What Is a CT Scan?

A computerized tomography scan (CT or CAT scan) uses computers and rotating X-ray machines to create cross-sectional images of the body. These images provide more detailed information than normal X-ray images. They can show the soft tissues, blood vessels, and bones in various parts of the body. A CT scan may be used to visualize the:

  • head
  • shoulders
  • spine
  • heart
  • abdomen
  • knee
  • chest

During a CT scan, you lie in a tunnel-like machine while the inside of the machine rotates and takes a series of X-rays from different angles. These pictures are then sent to a computer, where they’re combined to create images of slices, or cross-sections, of the body. They may also be combined to produce a 3-D image of a particular area of the body.

Why Is a CT Scan Performed?

A CT scan has many uses, but it’s particularly well-suited for diagnosing diseases and evaluating injuries. The imaging technique can help your doctor:

  • diagnose infections, muscle disorders, and bone fractures
  • pinpoint the location of masses and tumors (including cancer)
  • study the blood vessels and other internal structures
  • assess the extent of internal injuries and internal bleeding
  • guide procedures, such as surgeries and biopsies
  • monitor the effectiveness of treatments for certain medical conditions, including cancer and heart disease

The test is minimally invasive and can be conducted quickly.

How Is a CT Scan Performed?

Your doctor may give you a special dye called a contrast materialto help internal structures show up more clearly on the X-ray images. The contrast material blocks X-rays and appears white on the images, allowing it to highlight the intestines, blood vessels, or other structures in the area being examined. Depending on the part of your body that’s being inspected, you may need to drink a liquid containing the contrast. Alternatively, the contrast may need to be injected into your arm or administered through your rectum via an enema. If your doctor plans on using a contrast material, they may ask you to fast for four to six hours before your CT scan.

When it comes time to have the CT scan, you’ll be asked to change into a hospital gown and to remove any metal objects. Metal can interfere with the CT scan results. These items include jewelry, glasses, and dentures. Your doctor will then ask you to lie face up on a table that slides into the CT scanner. They’ll leave the exam room and go into the control room where they can see you and hear you. You’ll be able to communicate with them via an intercom.

While the table slowly moves you into the scanner, the X-ray machine will rotate around you. Each rotation produces numerous images of thin slices of your body. You may hear clicking, buzzing, and whirring noises during the scan. The table will move a few millimeters at a time until the exam is finished. The entire procedure may take anywhere from 20 minutes to one hour.

It’s very important to lie still while CT images are being taken because movement can result in blurry pictures. Your doctor may ask you to hold your breath for a short period during the test to prevent your chest from moving up and down. If a young child needs a CT scan, the doctor may recommend a sedative to keep the child from moving.

Once the CT scan is over, the images are sent to a radiologist for examination. A radiologist is a doctor who specializes in diagnosing and treating conditions using imaging techniques, such as CT scans and X-rays. Your doctor will follow-up with you to explain the results.

What Are the Risks Associated with a CT Scan?

There are very few risks associated with a CT scan. Though CT scans expose you to more radiation than typical X-rays, the risk of cancer caused by radiation is very small if you only have one scan. Your risk for cancer may increase over time if you have multiple X-rays or CT scans. The risk of cancer is increased in children receiving CT scans, especially to the chest and abdomen.

Some people have an allergic reaction to the contrast material. Most contrast material contains iodine, so if you’ve had an adverse reaction to iodine in the past, make sure to notify your doctor. Your doctor may give you allergy medication or steroids to counteract any potential side effects if you’re allergic to iodine but must be given contrast.

It’s also important to tell your doctor if you’re pregnant. Though the radiation from a CT scan is unlikely to harm your baby, your doctor may recommend another exam, such as an ultrasound or MRI scan, to minimize risk.

What Do CT Scan Results Mean?

CT scan results are considered normal if the radiologist didn’t see any tumors, blood clots, fractures, or other abnormalities in the images. If any abnormalities are detected during the CT scan, you may need further tests or treatments, depending on the type of abnormality found.