Intracranial Hypertension Clinic
Groundbreaking Diagnosis and Treatment for Patients with Intracranial Hypertension
Intracranial Hypertension Clinic
The Intracranial Hypertension Clinic at Nationwide Children's Hospital is the first in the country to provide comprehensive care for children with this condition. Our multidisciplinary group includes physicians from Neurology, Ophthalmology, and the Center for Healthy Weight and Nutrition. As needed, patients may also be referred to Neurosurgery and Endocrinology.
What is Idiopathic Intracranial Hypertension?
Idiopathic intracranial hypertension, sometimes called pseudotumor cerebri, is when the cerebrospinal fluid (the fluid inside the skull) is not able to drain normally. When no underlying cause is found for the increased pressure, the condition is said to be “idiopathic.” The term “pseudotumor” is sometimes used because the extra fluid mimics the effects of a brain tumor by pushing against the brain. This condition has nothing to do with tumors or cancer.
What are the symptoms of intracranial hypertension?
Symptoms can include any of the following:
- Headaches each day with pulsing or throbbing above the eyes, or at the back of the head and neck. These headaches are often worse when lying down or in the morning.
- Any movement that increases pressure in the abdomen (like coughing, bearing down, or bending over) that makes the headache worse
- A whooshing or ringing sound in one or both ears
- Double vision (due to pressure on the nerves controlling eye movement)
- Brief changes in vision, like short-term dimming or blacking out
- Peripheral vision (vision out to the sides) fades or gets blurry or black
- Dizziness, nausea and vomiting
What causes intracranial hypertension?
The exact cause is not known. However, we do know if the body makes more cerebrospinal fluid than the amount absorbed, it causes the pressure inside the skull to increase.
What are the risk factors for intracranial hypertension?
So far, we know of three factors that increase the risk of
having intracranial hypertension:
- Being female
- Being a teen
Some medicines increase the risk of developing intracranial hypertension. These include medicines used to treat acne, steroids, growth hormone, antibiotics, thyroid replacement medicines and some chemotherapy drugs. Other disorders that can lead to intracranial hypertension include kidney disease, head injuries, lupus, severe sinus infections, ear infections, measles, blood-clotting disorders, anemia and malnutrition. When medicines or other conditions are the cause, it is called “secondary intracranial hypertension.”
Can children develop intracranial hypertension?
- Children (both boys and girls) who have not reached puberty
- Teenagers who have reached puberty and have the risk factors listed above
How do we diagnose intracranial hypertension?
For symptoms of intracranial hypertension, an ophthalmologist (eye doctor) usually looks for swelling of the optic nerve in the back of the eye, and for signs of vision loss. Some diseases can appear the same as intracranial hypertension. Tests like a CT or MRI scan help to rule out these diseases. If the imaging does not show a cause, the next test is a lumbar puncture (spinal tap). This test measures the pressure inside the skull, and removes some of the cerebrospinal fluid. Intracranial hypertension is diagnosed if the symptoms listed above are present and there is elevated pressure inside the skull.
Why do we treat intracranial hypertension?
The increased pressure causes headaches and injury to the optic nerves. If the pressure is not corrected, the nerve injury can cause blindness.
How is intracranial hypertension treated?
The ophthalmologist will closely monitor your child’s vision and the nerve swelling. Medicines to lower the pressure and bring down the nerve swelling are the most common treatment. There are three groups of medicines used alone or together.
While less common, sometimes surgery is done to help lower the pressure. This can include placing small cuts in the covering of the nerve (optic nerve fenestration), or a tube (shunt) to slowly remove some of the cerebrospinal fluid (in the spinal canal, or inside the skull).
At Nationwide Children’s Hospital, we have a special clinic for patients with intracranial hypertension. Typical office visits include exams by an ophthalmologist and a neurologist. Sometimes patients in our clinic are also seen by specialists from Neurosurgery, Hematology, Psychology and Healthy Weight and Nutrition.
Are there treatments besides medicine and surgery that can help?
The most important thing anyone can do to improve this condition is to maintain a healthy weight, or lose weight if obese. If your child needs to lose weight, ask your doctor about local resources and clinics that can help.
What is the outcome of intracranial hypertension?
If treated, the outcome is good. If not treated, permanent blindness can occur. Unfortunately, up to one in 10 people with intracranial hypertension have some vision loss. Treatment typically lasts six to 12 months. With treatment, in most cases, this condition goes away. However, increased pressure can return months or even years later. You can reduce this risk by helping your child maintain a healthy weight. It is important to have regular eye exams to check for vision loss even after the intracranial hypertension gets better.
Recommendations for Caregivers
- Your child needs to drink 96 to 100 ounces of fluids each day. This can be water (you can add flavoring), juice, Gatorade™, Powerade®, or fat-free, 1% or 2% milk.
- If there is concern about your child’s weight, do not give juices, sugary drinks and drinks that are high in carbohydrates.
- Do not give your child drinks with caffeine. These include sodas, coffees and teas. Do not give caffeine-free versions of these drinks as they may have some caffeine as well as added calories.
- Mealtime is very important. Please make sure your child does not skip meals.
- Your child should have a regular bed and wake-up times and get a solid 8-9 hours of sleep each night.
- Make sure your child’s routine includes exercise each day. Walking, bike riding or an activity that makes him or her get short of breath and sweaty helps your child to lose weight and sleep better at night.
- You may give your child over-the-counter ibuprofen or Tylenol®. The doctor who releases your child from the hospital will tell you the dose to give your child. It is important that you do not give your child this medicine more than three times per week. Doing so may cause a different type of headache that is harder to treat.
- Keeping your child on his or her normal routine each day will also help to improve the headache. If he or she cannot participate in their normal routine and you have given the full amount of over-the-counter pain medicine for the week, call the Intracranial Hypertension Clinic at (614) 722-4109.
- Be sure your child takes the medicine as directed.
- If your child is taking Diamox®, and has numbness or tingling of hands, feet or face; a banana or orange juice or other potassium-rich food may help this. It is short-term and should improve over a few weeks. If it does not get better call us.
- If your child is taking Lasix®, it is important to keep up with his or her fluid intake. You should also increase potassium-rich foods in your child’s diet.
- Give either of these medicines on a full stomach to decrease the chances of nausea (an upset stomach).
- A new patient appointment will be scheduled for your child within two weeks after they have been discharged. If you have not heard from us by the end of two weeks, please call our scheduler at (614) 722-4658.
IMPORTANT: Please do not call Central Scheduling to schedule, change or cancel appointments.
- If your child has a severe headache, nausea or vomiting with headaches, or complains of changes in his or her vision (blackouts, spots, etc.), call Gada McMahen right away at (614) 722-4109. Do not wait for the clinic visit.
Whom do I contact if I have questions or concerns?
- General medical questions: Contact Gada McMahen at (614) 722-4109.
- Scheduling or other non-medical questions: Call Christie Memmer at (614) 722-4658. Please leave a message if she does not answer. She will return your call as soon as possible.
- Emergencies: Call (614) 722-2000 and ask for the neurologist on call or bring your child to the Emergency Department.