How common are seizures for people with lupus?
Seizures are a relatively common experience for Lupus Warriors. Though, prevalence studies have been limited due to small sample sizes.
A 2004 study found that 11.2% of lupus patients had epileptic seizures (60 participants out of 519 enrolled participants with SLE). And, other studies measure it at rates as high as 58%.
It can be difficult to measure the level and severity of seizures. Sometimes not being noticeable at all. However, this research confirms that seizures are one of several relatively common brain-related symptoms that can come along with lupus.
More about seizures and lupus
Like the other neurological symptoms of lupus, seizures may be caused by inflammation in the:
- brain and spinal cord itself (attacking the nervous system and causing problems there)
- bloodstream (attacking blood flow and restricting oxygen to the brain.)
Some medications used to treat lupus have been linked to seizures. The Johns Hopkins Lupus Center notes that hydroxychloroquine (also known as Plaquenil) can cause major neurological side effects but these are “quite rare.” A 2000 case study noted that the risk may increase for people predisposed to seizures.
You can read more about the brain-related symptoms, or neuropsychiatric, symptoms of lupus, including brain fog, here.
So, what exactly is a seizure?
What are seizures?
A seizure is a sort of “electrical storm” that happens inside the brain. It is either due to unusual activity in the brain or unusual connections between neurons. Some people are born with an epileptic – seizure – disorder. Others may develop (or lose it) as they grow. And it’s also possible for someone without a history of seizures to experience one due to intense stimuli such as bright flashing lights.
Seizures interfere with the activity of neurons in the brain. This causes the system to briefly go haywire. People with a seizure condition can sometimes tell when one is about to come on, since the “storm” gathers and affects their brain in predictable ways. These patterns of sensation are commonly known as “auras.” Colors, sounds, feelings – each person has a unique aura experience.
There are several types of seizures. The symptoms of effects of the seizures vary depending on the location or locations of the brain involved.
Generalized Onset Seizures
Generalized onset seizures involve both sides of the brain and can involve convulsions or twitching. General onset seizures will often involve unconsciousness or confusion.
Generalized seizures with loss of consciousness and motor (movement and muscle) involvement are the most well-known because they show up as a “Tonic-clonic” seizures, formerly known as “grand mal” seizures.
Tonic-Clonic Seizure Stages
Tonic-clonic seizures follow a specific series of stages:
- The “tonic phase” where all the muscles stiffen. The person having the seizure may cry out or groan as their chest compresses and air is forced out past their vocal cords. They will typically lose consciousness at this time and collapse if they were standing. They may also bite their tongue as their teeth clench together.
- The “clonic phase,” where the muscles begin to be activated rhythmically, causing jerking and bending in the arms and legs. Typically, this will involve the larger joints – the elbows, knees, and hips. Breathing may be impaired by the loss of muscular control, and the person having the seizure may start to turn blue or grey-ish if the seizure lasts a significant length of time.
- Usually, though, the body will enter the “relaxed phase” after a few minutes. The sudden involuntary movements slow and stop, and the person’s muscles relax. Breathing will be easier at this time, though if you are tending to someone who is in this phase, checking their airway to make sure that there is no obstruction can be a good idea. As the body relaxes, they may lose control of their bladder or bowels and soil themselves.
- Finally, typically after 1-3 minutes, the person will return to consciousness. After a tonic-clonic seizure, the person may be sleepy, disoriented, confused, irritable, or depressed. It is normal to experience fatigue or exhaustion after such a seizure.
Because of the breathing impairment in the tonic and clonic phases, seizures lasting for longer than 5 minutes are considered life threatening.
People with lupus are very at risk for tonic-clonic seizures. 9 to 58% of Lupus Warriors experience seizures according to a 1996 study, usually early in the course of the disease. The most common seizure type is tonic-clonic.
Focal Onset Seizures
Focal onset seizures begin and usually remain in a specific part of the brain. Because of this, the symptoms can vary – the patient can be conscious, unconscious, or confused, may have twitching or convulsions, or be completely unaware that a seizure has occurred. A focal seizure can spread through the brain and become a general onset seizure as it spreads.
Focal onset seizures can result in an absence seizure – where the person having the seizure simply stops what they are doing and “spaces out” for a period of time. This seizure can range from a few seconds to a few minutes. Typically, after such a seizure, the person resumes their activities as normal – even talking. They may not be aware that a seizure has occurred. Unless the person is performing a dangerous activity that requires complete attention, (such as swimming or driving,) these are not typically dangerous.
According to a 2004 survey and study on people with SLE, the majority of seizures caused by SLE are focal onset seizures, which can happen outside of a flare.
Unknown Onset Seizures
Unknown onset seizures are, as the name states, a seizure with an unknown origin point. Usually this is because it was not observed, or it started as a focal seizure and spread. Usually, over time, the seizure will be diagnosed as focal onset or general onset.
Should I worry about seizures and lupus?
Lupus patients with renal (kidney) damage, other brain-related symptoms of lupus, and high levels of inflammation (such as a flare) are the most at risk for having a seizure. Many medications also increase the risk. However, most seizures in lupus are low-impact on their own. In a 2011 study involving 1631 people with SLE, researchers determined that:
“Most seizures resolved without a negative impact on health-related quality of life.”
So typically, the seizure itself is not an issue. However, in a 1992 study, patients with more severe seizures and other neurological symptoms of lupus also had more severe organ damage overall, making seizures an important measure (or barometer) for the disease. If you are having seizures, it might be worth going to a doctor and doing tests to see if your lupus has done further damage.
A seizure that lasts 5-10 minutes is considered an emergency. As is a series of three or more seizures in a row, or a seizure where the person having the seizure fails to wake up.
This is called Status Epilepticus and is caused by issues with the chemicals in the brain that control seizures. It can cause permanent damage to the brain and body, and even result in death. However, if treated early and aggressively in a hospital, this may be avoided and the person’s life can be saved.
If you are caring for someone who is experiencing this, call 911 immediately and go to a hospital for care.
Diagnosing Seizures in Lupus
Focal seizures caused by lupus can be difficult to diagnose, since the symptoms look like “daydreaming” or “spacing out.” The person having the seizure is also not generally aware of an absence seizure, and has no ill effects afterwards. However, if it happens frequently, then it may be noticed.
If seizures are suspected in a person with lupus, then blood tests, EEG tests, and brain imaging tests will be used. More intense seizures such as tonic-clonic seizures will require an immediate CT scan to check for potential damage or alternate causes.
It is not a bad idea to add an epileptologist and neurologist to your lupus team if you have any brain-related symptoms – it doesn’t hurt.
Treating Seizures with Lupus
If someone is having a seizure, it is important to make sure that they do not hurt themselves. Make sure that they are comfortable and safe. Usually, a pillow under their head or blocking any hard surfaces will be enough if they are on the floor and convulsing. Most seizures resolve on their own and the person having the seizure will be fine afterwards, though they may be confused.
However, there are some cases that require emergency medical care:
- The seizure that lasts longer than 5 minutes. A long seizure may be an indicator of underlying damage. It can cause damage to the brain and body because of the extended lack of oxygen to the brain or muscle action.
- A second seizure follows immediately afterwards. A series of seizures can be an indication of damage, or at the very least, that something that triggered the seizure is still active.
- The person has trouble breathing or regaining consciousness. This could mean that there is an unseen injury, but most of the time it means that they are having some sort of complication due to the seizure.
- The person sustained an injury during the seizure. Especially if they have hit their head during a fall or a convulsion. It can be hard to determine the extent of the injury.
- The seizure happened while in or under water. Seizures can cause someone to be unable to keep themselves above water, or to accidentally breathe in water. Get the person out of the water as soon as possible.
Emergency services might also be needed if this is the person’s first seizure. Also if they have diabetes, heart disease, or are pregnant.
After the seizure is over, make sure that the person is safe and conscious. Explain what happened to them clearly and calmly. They may be disoriented or fatigued – especially if the seizure is caused by a lupus flare – and may need help getting back home safely.
Seizure Medications and Lupus
Medications treat the symptoms and causes of seizures. In fact, corticosteroids, a common medication for lupus, also can treat some forms of epilepsy and seizure conditions. However, corticosteroids can also cause seizures, so it may not be right for you.
Depakote is an oral medication that uses Divalproex sodium to prevent seizures. It changes the activity of chemicals in the body that induce seizures. Although suitable for people with lupus, it should not be taken by people with:
- Allergies to divalproex sodium;
- Liver disease or liver damage; or a
- Urea cycle disorder
It can also result in certain side effects, including serious ones such as:
- Suicidal thoughts
- Loss of appetite
- Anxiety and depression
- Bleeding or bruising issues
- Gastrointestinal pain
- Severe drowsiness
- Chest pains
- and inflammation or allergy symptoms
If you experience these symptoms or experience worse seizures, then Depakote should not be continued.
Anti-seizure medications usually serve to reduce the risk and frequency of seizure, and should be taken as prescribed by a doctor.