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PubMed This is a summary of 22 peer-reviewed journal articles Updated
Neuro-oncology

Managing Symptoms and Quality of Life: Seizures, Swelling, and Fatigue

At a Glance

Managing a glioma involves actively treating symptoms like brain swelling, seizures, and fatigue to protect your quality of life. Using specific medications like dexamethasone and levetiracetam, along with comprehensive neuro-rehabilitation, helps patients regain function and maintain independence.

Managing a glioma involves more than just treating the tumor; it means caring for your whole self. While the tumor can cause symptoms like seizures or weakness, the treatments themselves—and the body’s natural response to them—can also affect your daily life [1]. By working with a multidisciplinary team, you can manage these challenges and prioritize your quality of life [2].

Understanding Brain Swelling (Edema)

Gliomas often cause peritumoral edema, which is a buildup of fluid in the brain tissue surrounding the tumor [3]. This occurs because the tumor disrupts the blood-brain barrier (the protective shield around the brain), allowing fluid to leak into the tissue and create pressure [4][5].

To manage this, doctors commonly prescribe dexamethasone (Decadron), a powerful corticosteroid [6].

  • How it helps: It stabilizes the leaky blood vessels, reducing pressure and often providing rapid relief from symptoms like headaches or weakness [5][7].
  • Physical Side Effects: Dexamethasone can cause significant physical side effects, including insomnia (trouble sleeping), increased appetite, weight gain, and elevated blood sugar [5][8].
  • Psychological Side Effects: Critically, high doses of steroids can cause severe mood changes, irritability (often called “steroid rage”), anxiety, and depression [9]. Families and caregivers must be prepared to monitor for these personality changes, recognizing that “it’s the medication talking.”
  • Tapering: Because your body stops making its own natural steroids while taking this medication, your doctor will provide a “taper” schedule to slowly reduce the dose rather than stopping it abruptly [5].

Managing Seizures

Seizures are one of the most common symptoms for people with gliomas, especially those with an IDH1 mutation [10][11].

  • Treatment: Levetiracetam (Keppra) is often used as a first-line medication because it is effective and generally has fewer interactions with other treatments like chemotherapy [12][13].
  • Prophylaxis (Prevention): If you have never had a seizure, your doctor may not prescribe “preventative” anti-seizure meds [14]. Research suggests that taking these medications “just in case” does not necessarily prevent a first seizure from happening and may cause unnecessary side effects [15][16].
  • Driving Restrictions: A diagnosis of a brain tumor, and especially the occurrence of a seizure, typically results in an immediate, mandatory suspension of driving privileges by law. This is a major lifestyle change, and patients should arrange alternative transportation in advance.
  • Seizure First Aid for Caregivers: If a patient has a seizure at home, caregivers should know to gently turn the patient onto their side to keep their airway clear, cushion their head, and never put anything in their mouth or try to hold them down.

The Power of Rehabilitation and Support

Neuro-oncology rehabilitation is an essential part of the healing process. This is not “waiting for things to get better,” but actively retraining the brain and body [17].

  • Physical Therapy (PT): Focuses on improving strength, balance, and mobility [18].
  • Occupational Therapy (OT): Helps you regain independence in daily activities like dressing, cooking, or using a computer [19][20].
  • Cognitive Therapy: Assists with “brain fog,” memory issues, or trouble focusing—common side effects of both the tumor and radiation [21].
  • Supportive/Palliative Care: Early involvement of a palliative care specialist is not about end-of-life; it is about “symptom management” [2]. These experts specialize in treating fatigue, pain, and emotional distress to ensure you can live as fully as possible during treatment [22].

Return to Home

Common questions in this guide

Why am I taking dexamethasone for a brain tumor?
Dexamethasone is a powerful steroid used to reduce brain swelling, or edema, caused by the tumor. It helps decrease fluid buildup and relieves pressure, which can quickly improve symptoms like headaches and weakness.
What are the common side effects of dexamethasone?
High doses of steroids can cause physical side effects like insomnia, increased appetite, and weight gain. They can also cause significant mood changes, such as irritability, anxiety, and depression. Your doctor will provide a schedule to slowly lower your dose safely.
Do I need anti-seizure medication if I haven't had a seizure?
Doctors typically do not prescribe preventative anti-seizure medication if you have never experienced a seizure. Research shows taking these medications just in case does not prevent a first seizure and can cause unnecessary side effects.
What should my family do if I have a seizure at home?
Caregivers should gently turn you onto your side to keep your airway clear and place a cushion under your head. They must never try to hold you down or put anything in your mouth during the seizure.
How can neuro-rehabilitation help with glioma symptoms?
Neuro-rehabilitation involves physical, occupational, and cognitive therapies that actively retrain your brain and body. These therapies focus on improving your physical strength, daily independence, and managing memory issues or brain fog.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.What is the plan to 'taper' or reduce my dose of dexamethasone as my swelling improves?
  2. 2.If I haven't had a seizure, do I still need to take anti-seizure medication 'just in case'?
  3. 3.Can you refer me to a neuro-rehabilitation specialist for a baseline assessment of my motor and cognitive function?
  4. 4.What can we do to manage my treatment-related fatigue so I can stay active?
  5. 5.How can I distinguish between a side effect of a medication and a new symptom of the tumor?

Questions For You

Tap a prompt to share your answer — we'll use it plus this page's context to start a tailored conversation.

References

References (22)
  1. 1

    Short-Course Radiation plus Temozolomide in Elderly Patients with Glioblastoma.

    Perry JR, Laperriere N, O'Callaghan CJ, et al.

    The New England journal of medicine 2017; (376(11)):1027-1037 doi:10.1056/NEJMoa1611977.

    PMID: 28296618
  2. 2

    Value-based Practice: Integration of Cancer Rehabilitation and Palliative Care in Oncology Services.

    Zhu Y

    Chinese medical sciences journal = Chung-kuo i hsueh k'o hsueh tsa chih 2018; (33(4)):204-209 doi:10.24920/003523.

    PMID: 30646982
  3. 3

    Peritumoral Edema in Gliomas: A Review of Mechanisms and Management.

    Ohmura K, Tomita H, Hara A

    Biomedicines 2023; (11(10)) doi:10.3390/biomedicines11102731.

    PMID: 37893105
  4. 4

    Blood-Brain Barrier Alterations and Edema Formation in Different Brain Mass Lesions.

    Solar P, Hendrych M, Barak M, et al.

    Frontiers in cellular neuroscience 2022; (16()):922181 doi:10.3389/fncel.2022.922181.

    PMID: 35910247
  5. 5

    Short review of SEC, a potential dexamethasone-sparing regimen for glioblastoma: Spironolactone, ecallantide, clotrimazole.

    Kast RE, Burns TC, Halatsch ME

    Neuro-Chirurgie 2021; (67(5)):508-515 doi:10.1016/j.neuchi.2020.12.008.

    PMID: 33450263
  6. 6

    Controversial roles for dexamethasone in glioblastoma - Opportunities for novel vascular targeting therapies.

    Dubinski D, Hattingen E, Senft C, et al.

    Journal of cerebral blood flow and metabolism : official journal of the International Society of Cerebral Blood Flow and Metabolism 2019; (39(8)):1460-1468 doi:10.1177/0271678X19859847.

    PMID: 31238763
  7. 7

    Corticosteroids compromise survival in glioblastoma.

    Pitter KL, Tamagno I, Alikhanyan K, et al.

    Brain : a journal of neurology 2016; (139(Pt 5)):1458-71 doi:10.1093/brain/aww046.

    PMID: 27020328
  8. 8

    Tumour-associated macrophage-derived interleukin-1 mediates glioblastoma-associated cerebral oedema.

    Herting CJ, Chen Z, Maximov V, et al.

    Brain : a journal of neurology 2019; (142(12)):3834-3851 doi:10.1093/brain/awz331.

    PMID: 31665239
  9. 9

    The effect of dexamethasone on the microenvironment and efficacy of checkpoint inhibitors in glioblastoma: a systematic review.

    Swildens KX, Sillevis Smitt PAE, van den Bent MJ, et al.

    Neuro-oncology advances 2022; (4(1)):vdac087 doi:10.1093/noajnl/vdac087.

    PMID: 35990704
  10. 10

    Prevalence of seizures in brain tumor: A meta-analysis.

    Audrey C, Lim KS, Ahmad Zaki R, et al.

    Epilepsy research 2022; (187()):107033 doi:10.1016/j.eplepsyres.2022.107033.

    PMID: 36274423
  11. 11

    High-frequency oscillations in awake patients undergoing brain tumor-related epilepsy surgery.

    Feyissa AM, Worrell GA, Tatum WO, et al.

    Neurology 2018; (90(13)):e1119-e1125 doi:10.1212/WNL.0000000000005216.

    PMID: 29490917
  12. 12

    Levetiracetam for seizure prevention in brain tumor patients: a systematic review.

    Nasr ZG, Paravattil B, Wilby KJ

    Journal of neuro-oncology 2016; (129(1)):1-13 doi:10.1007/s11060-016-2146-5.

    PMID: 27168191
  13. 13

    Efficacy and safety of Levetiracetam vs. other antiepileptic drugs in Hispanic patients with glioblastoma.

    Cardona AF, Rojas L, Wills B, et al.

    Journal of neuro-oncology 2018; (136(2)):363-371 doi:10.1007/s11060-017-2660-0.

    PMID: 29177594
  14. 14

    Epilepsy in patients with pediatric brain tumors: Etiology, treatment & management.

    Ku A, Esfahanizadeh A

    Seminars in pediatric neurology 2025; (53()):101187 doi:10.1016/j.spen.2025.101187.

    PMID: 40216491
  15. 15

    A systematic review of perioperative seizure prophylaxis during brain tumor resection: the case for a multicenter randomized clinical trial.

    Chandra V, Rock AK, Opalak C, et al.

    Neurosurgical focus 2017; (43(5)):E18 doi:10.3171/2017.8.FOCUS17442.

    PMID: 29088958
  16. 16

    Efficacy of perioperative anticonvulsant prophylaxis in seizure-naïve glioma patients: A meta-analysis.

    Wang X, Zheng X, Hu S, et al.

    Clinical neurology and neurosurgery 2019; (186()):105529 doi:10.1016/j.clineuro.2019.105529.

    PMID: 31574360
  17. 17

    Impact of Real-World Outpatient Cancer Rehabilitation Services on Health-Related Quality of Life of Cancer Survivors across 12 Diagnosis Types in the United States.

    Pergolotti M, Wood KC, Kendig TD, Mayo S

    Cancers 2024; (16(10)) doi:10.3390/cancers16101927.

    PMID: 38792004
  18. 18

    Physical Rehabilitation and Occupational Therapy.

    Capozzi LC, Dolgoy ND, McNeely ML

    Oral and maxillofacial surgery clinics of North America 2018; (30(4)):471-486 doi:10.1016/j.coms.2018.06.008.

    PMID: 30173903
  19. 19

    Cancer care and occupational therapy: A scoping review.

    Wallis A, Meredith P, Stanley M

    Australian occupational therapy journal 2020; (67(2)):172-194 doi:10.1111/1440-1630.12633.

    PMID: 31957031
  20. 20

    Association of Cognitive Impairment With Rate of Functional Gain Among Older Adults With Stroke.

    Cogan AM, Weaver JA, Davidson LF, et al.

    Journal of the American Medical Directors Association 2022; (23(12)):1963.e1-1963.e6 doi:10.1016/j.jamda.2022.07.026.

    PMID: 36058296
  21. 21

    Physical Therapy, Occupational Therapy, and Speech Language Pathology in the Emergency Department: Specialty Consult Services to Enhance the Care of Older Adults.

    Pontius EA, Anderson RS

    Emergency medicine clinics of North America 2021; (39(2)):419-427 doi:10.1016/j.emc.2021.01.005.

    PMID: 33863469
  22. 22

    Role of Physical Therapy Intervention in Patients With Life-Threatening Illnesses.

    Putt K, Faville KA, Lewis D, et al.

    The American journal of hospice & palliative care 2017; (34(2)):186-196 doi:10.1177/1049909115623246.

    PMID: 26722007

This page provides general information on managing glioma symptoms and is not a substitute for professional medical advice. Always consult your neuro-oncology team before adjusting medications or starting new therapies.

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