Seizures and Tuberous Sclerosis Complex

Approximately 85% of individuals with tuberous sclerosis complex (TSC) struggle with epilepsy. Seizures associated with TSC are often hard to control. See how you compare to others in the tuberous sclerosis complex community, find resources to help manage seizures and contribute to valuable research.

EPILEPSY IN INDIVIDUALS WITH TSC

What does epilepsy look like in people with TSC?

Use the tabs below to explore the facets of living with epilepsy and TSC.

Approximately 85% of people living with TSC struggle with epilepsy, and only about 50% of those gain seizure control through medication. For an overview of what seizures are common in TSC and how they present, visit the Tuberous Sclerosis Alliance’s page on Epilepsy and Seizure Disorders (available here).

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In TSC, most individuals are diagnosed with epilepsy within their first year of life, though some don’t get diagnosed until much later.

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Important! Infantile spasms (IS) are a common seizure type in tuberous sclerosis complex, and occur in up to 35% of infants with TSC. If left untreated, it can result in a delay of developmental milestones, the loss of previously acquired skills, and permanent intellectual disability.

Learn more about Infantile Spasms in TSC here! Join the Infantile Spasm Action Network to help STOP IS.

Biosample Repository

Help accelerate research on TSC biology, drug development and improving clinical care! Enroll in the TSC Natural History Database and consider contributing to the Biosample Repository.

AVAILABLE THERAPIES

What different therapies are available to you?

Medication

Most individuals living with TSC begin treatment by exploring antiepileptic drugs with their doctor. These can vary in effectiveness across the population, and may cause some adverse side effects. The best thing to do is talk to your neurologist about possible pharmacological treatments specific to treating seizures in TSC.

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Surgery

Sometimes medication treatments aren’t effective at treating seizures. In these cases, people with TSC might consider surgery as a possible alternative therapy. In TSC this can be difficult because patients with TSC often have multiple tumors in their brain, and the ideal surgical candidate has localized seizures, where the seizures stem from one portion of the brain. Even if this doesn’t fit your situation, surgery may still be a good option and has the potential to improve your quality of life. Talk to your neurologist if you think this may be the best option for you.

Resective Surgery

In a resection surgery, the brain tissue causing seizures is manually removed. This is best for individuals with localized seizures, but may not be possible for patients with tumors/tubers in certain parts of the brain.

Learn more about resective surgery:

Laser Ablation

In a laser ablation surgery, a metal probe is heated by a laser to kill the seizure causing brain tissue. This is a lower-risk surgery than a resection, with a faster recovery time, but this is not a viable treatment for everyone living with TSC and seizures.

Listen to the "TSC Now" Laser Ablation podcast

Corpus Callosotomy

In a Corpus Callosotomy, the brain is “split” by dividing the corpus callosum, a structure that connects the right and left halves of the brain. This is best for patients with seizures that severely impact their quality of life, but whose seizures cannot be localized.

Other Potential Therapies

In some cases, individuals with TSC aren’t able to gain seizure control, even after trying three or more medications. The following treatments can be effective if surgery is nonviable:

The Ketogenic Diet

This is a high-fat, low-carb diet that has the capacity to greatly decrease seizure quantity or provide seizure freedom in a sizable portion of the population. This could be tried by anyone who can accommodate the dietary restrictions, but it’s best to speak with your neurologist before beginning.

Learn more about diet therapy:

Vagus Nerve Stimulation (VNS)

This is an implant placed under the skin in your chest that connects to the vagus nerve, which runs to your brain. Bringing a magnet to the implant causes it to produce a pulse of electricity, which can stop or reduce the severity of an oncoming seizure. However, due to the nature of the implant, you can’t receive an MRI with the implant.

This is best for an individual that has “auras” so they can tell when they’re about to have a seizure, or someone who has a caretaker who can use the magnet in the event of a seizure.

Learn more about VNS therapy:

Responsive Neuro Stimulation

The RNS system is used to treat adults with focal epilepsy who have failed treatment with at least 2 seizure medications. A neurostimulator is placed under the scalp and within the skull, and it is connected to 2 electrodes placed either on the surface of the brain, into the brain, or a combination of both.

The device continuously monitors brain activity and then is programmed to detect seizures. When a seizure or seizure-like activity is detected, the device delivers a small amount of electrical current to the brain to stop or shorten the seizure, or possibly prevent a seizure altogether.

RNS is a “closed loop” system that continuously monitors the brain’s electrical activity and sends a brief pulse of electrical stimulation directly to the brain when a seizure or seizure-like activity is detected.

Learn more about RNS:

The TSC Alliance is dedicated to finding a cure for tuberous sclerosis complex, while improving the lives of those affected.

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