Among the most common of all brain tumor symptoms, headaches have a range of types and causes. About half of all people with a brain tumor report experiencing headaches.

Brain tumor-related headaches are generally the result of the tumor (or tumor-related fluid buildup) pressing against the brain’s sensitive blood vessels and nerves.

Many brain tumor patients describe their headaches as a persistent pain with the following features:

• Steady pain, but different than a migraine headache
• Worse when you first wake up, getting a bit better over the next few hours
• May be accompanied by vomiting
• May be accompanied by new neurological problems
• May be throbbing (depending on the tumor’s location)
• May get worse with coughing, exercise, or a change in position
• Often does not respond to over-the-counter pain medication (like aspirin or ibuprofen)

How to handle headaches

Here are some suggestions for managing headache pain caused by a brain tumor:

• • Treat with the medication your doctor prescribes.
  • Tell your doctor right away if the medication stops working or becomes less effective.
  • Keep a “headache journal.” It may be helpful for your doctor to have a record of the headaches, particularly if they are becoming worse. An example of how to construct a headache diary can be found here

Call 911 or go to the emergency room if:

• The headache is accompanied by a fever or stiff neck.
• The headache is the highest degree of pain on the pain scale (ask your doctor or nurse for details).
• There is a significant change in mental status or level of responsiveness

Medline Plus: Headache, U.S. National Library of Medicine

A seizure is an episode caused by abnormal electrical activity in the brain. Normally, your body’s nerve cells communicate with each other through carefully controlled electrical signals. If something interferes with these signals, or communication pathways become compressed, stretched, or blocked, it can result in a seizure.

There are many different types of seizures, depending on which area of the brain has the abnormal electrical signals. These types include generalized and focal.

Common features of a generalized seizure include:

• Sudden onset
• Loss of consciousness and body limpness followed by twitching and relaxing muscle contractions
• Loss of control of bodily functions
• Short periods of no breathing (30 seconds); skin may turn dusky blue
• Short duration (2-3 minutes)

After the seizure passes, the person may feel sleepy or confused, have a headache or sore muscles, or experience brief weakness or numbness.

Common features of a focal seizure include:

• flashing lights
• rhythmic jerking movements of the face, arm
• altered spatial perception
• sudden speech difficulties
• Déjà vu, auditory hallucinations, odd smells

Seizures can be common in people with brain tumors. In some cases, a seizure is the first clue that an individual has a brain tumor.

How to handle seizures

Most seizures can be managed with medicines called anti-epileptic drugs (AEDs). Common AEDs include levetiracetam (e.g., Keppra), fosphenytoin/phenytoin (e.g., Dilantin), lacosamide (Vimpat), and valproic acid. Surgery to remove the tumor may also stop or reduce seizure activity.

Using Antiepileptic Drugs

The goal of drug therapy is always to control seizures with the lowest effective doses of antiepileptic medication and with the least side effects. There are several important points to remember:

• Maintain a Steady Level – the drug needs to reach and remain at the ideal level to be effective
• Take medication as prescribed and don’t miss any doses
• Checks Levels if Indicated – some medications require frequent blood tests in order to check the drug levels in the body
• Minimize Possible Drug Interactions – inform your doctor of all medications you are taking
• Understand Risks and Guidelines – work with your doctor to understand the length and duration you will take the antiepileptic medication.
• Report Side Effects – tell your prescribing physician about any and all side effects that may be caused by the medication

Before a seizure:

Seizures can happen at random – at any time, and with no particular trigger. However, there are sometimes warning signs that signal when a seizure is about to occur. People who regularly have seizures sometimes notice things that may signal an oncoming episode. This warning is called an “aura.” Auras vary by individual and can take the form of a headache, a change of mood, a muscle twitch, or a particular smell.

During a seizure:

• Keep the person safe — Clear area of objects. Move or guide the person away from harm to the floor.
• Turn the person onto their side — Keep the airway clear. Loosen tight clothing around the neck. Put something soft and small under their head.
• Time the seizure — Stay with the person. Check for medical ID on the person or their phone.
• Call 911 if…
  • The seizure lasts longer than 5 minutes
  • The person has difficulty breathing
  • The person is injured, pregnant, or sick
  • The person doesn’t return to their normal state
  • It is a first-time seizure
  • It occurs in or near water
  • The person has repeated seizures
• Remember – Never restrain a person having a seizure. Do not put anything in the person’s mouth.

After a seizure:

• Allow time for recovery.
• Communicate with your doctor if this is a new symptom.
• If you are taking an anti-epileptic medication, ask the doctor if the medication dosage needs to be adjusted.
• Maintain a record of seizure symptoms, including how long they last and how often they occur.

You can find more information on how to manage seizures in our brochure About Brain Tumors

Download the ABTA’s How-to Help Guide: Seizure First Aid.

View an ABTA Webinar on seizures.

Medline Plus: Seizures, U.S. National Library of Medicine

The National Comprehensive Cancer Network describes fatigue as “a distressing, persistent, subjective sense of physical, emotional, and/or cognitive tiredness or exhaustion related to cancer that is not proportional to recent activity and interferes with usual functioning.” It is a common brain tumor symptom which can include:

• A profound lack of energy
• Feeling suddenly tired
• Generalized weakness
• Limb heaviness
• Difficulty concentrating
• Irritability or emotional reactivity
• Sleeplessness
• Increased need to rest
• Decreased motivation
• Difficulty completing daily tasks
• Perceived problems with short-term memory

How to handle fatigue

Adjust your lifestyle

• Accept that you’re going to need some down time.
• Keep track of when your energy is up or down, and plan your days accordingly.
• Figure out what activities you can let go of or delegate to a friend, family member, caregiver, or professional.
• Set up your environment so that you spend as little energy as possible on daily tasks.
• Ask your doctor about meeting with an occupational therapist to learn energy-conservation strategies.

Eat for energy

• Eat small, frequent meals that combine complex carbs with vegetables, dairy, and some protein to keep your energy stable.
• If you have the energy to cook, focus on fresh ingredients that have lots of nutritional value.
• Prepare your food sitting down.
• Cook in large batches.
• Use kitchen time savers, from pre-cut veggies to disposable pans.

Exercise

• Check with your healthcare team before starting any exercise or fitness plan.
• Try moderate exercise to boost your energy level – walking, aerobics, yoga, and resistance training are good choices.

Focus on sleep

• Develop good sleep hygiene.
• Go to bed at the same time every night.
• Set a consistent routine to wind down for sleep.
• Limit vigorous activities and caffeine before bed.
• Avoid screens (phone, TV, or computer) for at least one hour before bed.
• Add short naps (less than one hour) to your routine in the early afternoon to give you an energy boost but don’t use daytime naps as a substitute for a full night’s rest

Medications

• Medications such as methylphenidate, modafinil, steroids, and antidepressants can help alleviate fatigue.
• Work with your doctor to understand the purpose of these medications and when to take them.

Nausea is feeling sick to your stomach and feeling as if you may vomit. Nausea and vomiting are often caused by intracranial pressure due to the tumor, inflammation (edema), or cerebrospinal fluid build-up (called hydrocephalus). Hydrocephalus happens when a tumor blocks the normal flow of cerebrospinal fluid. Nausea and vomiting may also occur as a side effect of chemotherapy.

How to handle nausea and vomiting

Surgical removal of the tumor could reduce the pressure that causes nausea and vomiting. Swelling (edema) is often treated with steroids. Hydrocephalus can be treated by surgically removing the tumor and restoring normal fluid flow, or by using a drainage system called a shunt. Medications such as ondansetron may be prescribed by your physician to help control nausea and vomiting.

Clinical depression (also called Major Depressive Disorder) goes far beyond a case of “the blues” or sadness. Depression is persistent and can interfere with many aspects of daily life. Symptoms may include a prolonged feeling of sadness, loss of interest or pleasure in things that used to be enjoyable, feelings of worthlessness or guilt, changes in sleep patterns, decreased energy, and even thoughts of suicide.

Mood swings are sudden, unexplained changes in mood. You can be content one moment, and very angry the next without any reason.

Depression and mood swings are common among both brain tumor patients and their loved ones. Estimates suggest that more than 1 in 4 people with a brain tumor experience a major depressive disorder.

Depression and mood swings can be caused by the tumor disrupting brain function. They can also be a psychological reaction to a brain tumor diagnosis and adjusting to this new impact on life. Tumors in the frontal and temporal lobes more commonly cause mood-related symptoms.

How to handle depression and mood swings

It is important that you are able to identify the signs and symptoms associated with depression and mood swings and get help. By carefully looking for symptoms of depression or other mood symptoms, you may be the first to identify this important issue and alert the doctor to your concerns. Your doctor can perform a formal evaluation, and, if you are diagnosed with depression or another mood disorder, help you get effective treatment.

Depression can affect almost every aspect of life. Pay attention to how much depression is impacting your quality of life to know when it’s become a serious problem. Treatments for depression include psychotherapy (talk therapy), antidepressant medications, regular exercise, practicing mindfulness, complementary medicine, and brain stimulation therapy (e.g., electroconvulsive therapy).

It is important to remember that depression is not a sign of weakness—it is a common occurrence for people with brain tumors. Untreated depression can slow the rates of recovery and cause other health problems. Getting help for depression may be part of your brain tumor treatment plan for your mental health and well-being. Treatment for depression and mood swings typically consists of medication and/or counseling.

Contact your health insurance provider or primary physician for referrals to local therapists and/or psychiatrists.

National Institute of Mental Health, Depression

Anxiety is experienced as intense and frequent worry and fear. Anxiety can interfere with emotional well-being and daily activities like work or relationships. Between 17-31% of brain tumor patients report moderate to severe levels of anxiety.

Symptoms associated with anxiety may include feeling restless or on-edge, becoming tired easily, difficulty concentrating, irritability, headaches, muscle aches, stomachaches or unexplained pains, breathing quickly, having a fast heartbeat, difficulty controlling feelings of worry, and difficulty sleeping.

Brain tumors can cause anxiety by pressing on the amygdala, a part of the brain associated with emotions like fear. Anxiety can also be a psychological reaction to aspects of the brain tumor experience like hearing a prognosis, fear of tumor recurrence and/or dying, and anticipating medical events like treatments or scans. (Certain medications like steroids can also cause anxiety.)

How to handle anxiety

Anxiety can affect almost every aspect of life. Pay attention to how much anxiety is impacting your quality of life to know when it’s become a serious problem. Some ways that can help manage anxiety include psychotherapy (talk therapy), anti-anxiety medications, regular exercise, social and peer support, relaxation techniques, practicing mindfulness, and more.

It’s important to understand that feelings of anxiety are common and that you’re not alone. Make sure to let your medical team know if you are experiencing symptoms of anxiety to help you get effective treatment.

Brain tumors can cause a number of symptoms that present as or overlap mental health disorders. They often look like significant changes in the patient’s personality, behavior, mood and/or thinking. If untreated, these symptoms, also known as neuropsychiatric symptoms, can cause distress for the patient and their loved ones.

Changes in personality and behavior are one of the most challenging symptoms for caregivers to live with. Someone who was once driven and motivated before a brain tumor diagnosis can now be passive and inhibited. Or someone who was once described as sweet and kind could become irritable and controlling. Loved ones can feel frustration or sense of loss for the person they knew “before.”

Other examples of neuropsychiatric symptoms include aggression, delusion, hallucination, impulsivity, mania, paranoia, psychosis, and violent behavior. In extreme cases, these changes can lead to situations in which the person, their caregiver, loved ones or others are placed at risk.

Neuropsychiatric symptoms related to a brain tumor can have several causes, including tumor location, injury caused by the tumor, age, general health, the psychological and emotional effects of brain tumors, side effects of medications, and other health issues.

How to handle personality changes

If you or your caregiver notice significant changes in personality, behavior, or mood, it is important to tell your doctor. Health care providers can help address these symptoms. Strategies to address these symptoms include surgery, radiation, medication changes, lifestyle changes, psychiatric medications, and counseling/psychotherapy.

The following are tools to help navigate such changes: 

• Determine if the change is due to the situation, disease, or treatment
• Understand that changes in personality, behavior, mood, or cognition may require counseling and/or medications
• Positively reinforce behavior that represents progress away from problem behavior
• Talk to a health care provider about new strategies to help with the problem behaviors.
• Remove yourself from stressful situations when appropriate.
• Develop a comprehensive plan with your health care team, implement the plan consistently, and practice patience.N

Neuropsychiatric Symptoms of Brain Tumors brochurec Symptoms brochure

National Library of Medicine. Psychiatric Aspects of Brain Tumors: A Review

Changes in cognitive function are a common symptom among brain tumor patients. In some cases, these changes are so subtle that the patients themselves are more aware of their difficulties than are those around them. In others, it is the caregiver rather than the patient who first recognizes that something is different.

Cognitive changes commonly fall into a few broad categories:

• Learning and memory: Difficulty learning and recalling new information or experiences. For people with brain tumors, short-term memory is most commonly affected.
• Language and communication: Difficulty with word finding and communication (speaking, reading, and/or writing).
• Attention and concentration: Distracted easily, difficulty multitasking.
• Executive functioning: Decreased reasoning ability, impaired judgment, inability to connect cause and effect, difficulty planning and organizing.

The tumor’s location, size, and growth rate can have a lot to do with how a person thinks and acts. Cognitive changes often depend on the area of the brain affected by the tumor.

How to handle cognitive changes

As a first step, it’s a good idea to inform your medical care team. A doctor may suggest a complete neuropsychological evaluation. This detailed evaluation of your current behavioral, cognitive, and emotional status can help identify specific issues and assist your treatment team in determining how to help.

Different cognitive issues are addressed in different ways. Speech and language therapy can help with relearning communication skills and finding new ways to communicate if needed. Cognitive rehabilitation therapy can help with memory loss, learning, attention, and executive functioning. Using lists, taking notes, participating in brain stimulating activities, or recording information are some tips that may be suggested. Psychotherapy can address management of emotional status, and medication can also be an option. Talk to your medical team to decide which options are best for you.

There are various nerves in the brain that help with functions such as hearing, seeing, and facial movement. These are called cranial nerves. Tumors can grow on or near these nerves, causing symptoms related to the nerve’s function, including:

• hearing issues: ringing, buzzing, or loss of hearing in one or both ears
• balance problems: difficulty walking or standing
• decreased muscle control: weakness of some facial muscles
• decreased sensation: facial numbness or pain
• trouble swallowing
• vision problems (usually double vision)

Cranial nerve symptoms are caused by a tumor that has grown on or near a cranial nerve. The pressure of the tumor disrupts the nerve’s functioning, causing the symptoms.

How to handle cranial nerve symptoms

Cranial nerve symptoms are treated in different ways. Surgical removal of a tumor could remove the pressure on the nerve and reduce symptoms. Speech and language therapy can help restore functioning in facial movements, chewing, and swallowing. An audiologist can help address hearing loss. Physical/Occupational therapy can help improve balance and movement and an ophthalmologist can help address vision loss.

Vision problems can develop when a tumor places pressure on a certain area of the brain, most commonly the occipital lobe or the optic nerve.

Brain tumors can lead to vision problems such as:

• Blurred vision
• Double vision
• Abnormal eye movements
• Sensitivity to light
• Loss of vision (partial or complete)

How to handle vision changes

It is important to discuss any vision problems with a neuro-ophthalmologist or primary care doctor.

Physical and occupational therapy can assist with vision retraining. You may be prescribed special glasses with prisms or alternating eye patching to assist with double vision. Being aware of your vision problems can assist with learning to scan your environment in order to avoid injury.