⚡ Managing Seizures

Seizures are common in GBM patients. Understanding what they are, how to respond, and how to stay safe can reduce fear and improve quality of life.

🚨 What to Do During a Seizure

1

Stay Calm

Most seizures stop on their own within 1-3 minutes. You cannot stop a seizure once it starts.

2

Protect from Injury

Clear hard or sharp objects away. Guide them gently to the floor if standing. Cushion the head with something soft.

3

Turn on Side (Recovery Position)

Once jerking stops, gently turn them on their side to keep the airway clear and prevent choking.

4

Time the Seizure

Note when it started. If it lasts more than 5 minutes, call 911.

5

Stay With Them

After the seizure, they may be confused or sleepy (postictal state). Stay until they're fully alert.

📞 When to Call 911

  • Seizure lasts longer than 5 minutes
  • Person doesn't regain consciousness
  • A second seizure follows quickly
  • Person has trouble breathing after the seizure
  • Seizure occurs in water
  • Person is injured during the seizure
  • Person has a health condition like diabetes or heart disease
  • This is their first seizure ever
  • Person is pregnant
💡 For Known GBM Patients: If seizures are expected and this one follows their usual pattern, you may not need to call 911 for every seizure. Discuss an emergency action plan with the care team in advance.

✅ Do's and Don'ts

✓ DO

  • Stay calm and stay with the person
  • Clear the area of hazards
  • Cushion their head
  • Loosen tight clothing around neck
  • Turn them on their side when jerking stops
  • Time the seizure
  • Speak calmly and reassure them as they recover
  • Let them rest afterward

✗ DON'T

  • Put anything in their mouth (they won't swallow their tongue)
  • Try to hold them down or restrain them
  • Try to stop the movements
  • Give food or water until fully alert
  • Leave them alone until fully recovered
  • Panic - your calm presence helps

🧠 Types of Seizures in GBM

Not all seizures involve falling and shaking. GBM patients may experience different types depending on tumor location:

💫 Focal Aware Seizures

Person stays conscious but may have unusual sensations, twitching in one area, or brief "spacing out." May feel déjà vu, strange smells, or tingling.

Duration: Seconds to 2 minutes

😵 Focal Impaired Awareness

Consciousness is affected. Person may stare blankly, make repetitive movements (lip smacking, hand rubbing), or seem "not there."

Duration: 1-2 minutes typically

⚡ Tonic-Clonic (Grand Mal)

The "classic" seizure with loss of consciousness, falling, stiffening, and rhythmic jerking. May involve loss of bladder control.

Duration: Usually 1-3 minutes

🔗 Focal to Bilateral

Starts as a focal seizure and spreads to become a tonic-clonic seizure. Person may have a warning "aura" before it progresses.

Duration: Variable

💡 Tracking Seizures: Keep a seizure diary noting date, time, duration, type, possible triggers, and how the person felt before and after. This information helps doctors adjust medications.

💊 Seizure Medications

Anti-epileptic drugs (AEDs) are used to prevent seizures. Common options for GBM patients:

First-Line Options

  • Levetiracetam (Keppra) - Preferred because it has minimal drug interactions with chemotherapy. Can cause mood changes.
  • Lacosamide (Vimpat) - Good alternative if Keppra isn't tolerated.

Other Options

  • Valproic Acid (Depakote) - Older medication, more side effects, but some studies suggest it may help with GBM treatment.
  • Lamotrigine (Lamictal) - Generally well-tolerated, requires slow dose increases.
⚠️ Avoid: Phenytoin (Dilantin) and Carbamazepine (Tegretol) can reduce chemotherapy effectiveness by affecting how the body processes drugs.

Important Notes

  • Take medications exactly as prescribed - even one missed dose can trigger a seizure
  • Never stop seizure medications suddenly without medical guidance
  • Report any new seizures or changes in seizure pattern to your doctor
  • Blood levels may need monitoring for some medications

⚠️ Common Seizure Triggers

While GBM itself causes seizures, certain factors can lower the seizure threshold:

  • Missed medications - The most common trigger
  • Sleep deprivation - Try to maintain regular sleep
  • Stress and anxiety
  • Alcohol - Can interact with medications and lower seizure threshold
  • Illness or fever
  • Dehydration
  • Flashing lights (less common in tumor-related epilepsy)
  • Low blood sugar
  • Certain medications - Some drugs can lower seizure threshold
💡 Prevention Tips:
  • Set medication alarms and never miss a dose
  • Prioritize sleep (7-8 hours when possible)
  • Stay hydrated
  • Limit alcohol or avoid completely
  • Manage stress with relaxation techniques

🏠 Home Safety for Seizure Risk

🛁
Bathroom

Showers instead of baths. Non-slip mats. Don't lock the door.

🍳
Kitchen

Use back burners. Microwave when possible. Sit while cutting.

🛏️
Bedroom

Low bed to reduce fall distance. Firm pillows. Consider seizure monitor.

🪜
General

Avoid ladders and heights. Secure rugs. Pad sharp furniture corners.

🏊
Water

Never swim alone. Supervise all water activities. Wear life jacket on boats.

🚗
Driving

Know your state's laws. Often requires seizure-free period. Ask your doctor.

🚗 Driving and Seizures

Seizures and driving are a serious safety concern. Laws vary by state/country, but typically:

  • Most states require a seizure-free period (often 3-12 months) before driving
  • Your neurologist can advise you on specific requirements in your area
  • Some states require doctors to report seizures to the DMV
  • Losing driving privileges is difficult, but safety comes first
✓ Alternatives to Consider:
  • Ride-share services (Uber, Lyft)
  • Family and friend transportation network
  • Public transportation
  • Medical transportation services (may be covered by insurance)
  • Volunteer driver programs (American Cancer Society Road to Recovery)

📋 Seizure Preparedness Checklist

  • Emergency contact information posted/saved in phone
  • List of current medications easily accessible
  • Medical ID bracelet or card in wallet
  • Family/caregivers trained in seizure first aid
  • Seizure diary/tracker in use
  • Home safety modifications made
  • Emergency action plan discussed with care team
  • Rescue medication (if prescribed) accessible and not expired
  • Important people (employers, friends) informed as appropriate

❤️ Living with Seizure Risk

Having seizures or seizure risk can feel frightening and limiting. Some thoughts that may help:

  • It's manageable: Most seizures can be controlled or reduced with proper medication
  • You're not alone: Millions of people live full lives with seizure disorders
  • Preparation reduces fear: Having a plan makes everyone feel more confident
  • Communication helps: Tell those around you what to do - it reduces their anxiety too
  • Focus on what you CAN do: Restrictions are real, but many activities remain safe
💡 For Caregivers: Watching someone have a seizure can be traumatic. It's normal to feel shaken afterward. Take care of yourself too, and consider joining a support group where you can process these experiences.

⚠️ Medical Disclaimer

This information is for educational purposes only. Seizure management should be directed by your neurology team. If you have new seizures or changes in seizure patterns, contact your doctor promptly. In any emergency, call 911.