Idiopathic Intracranial Hypertension

GENERAL INFORMATION:

What is idiopathic intracranial hypertension? Idiopathic (id-e-o-PATH-ik) intracranial (in-trah-KRA-ne-al) hypertension (hi-per-TEN-shun), or IIH, used to be called pseudotumor cerebri or benign intracranial hypertension. It is a condition where the pressure inside the skull (head) is higher than normal. It happens without any obvious reason. With IIH, the pressure in the brain may become very high and squeeze the nerves in the brain. The nerve of the eye is the most commonly affected which may lead to blurring or loss of vision. The problems caused by IIH may progress slowly or quickly. IIH usually occurs in women of childbearing age and whose weight is much heavier than what is recommended by their caregiver.

What causes idiopathic intracranial hypertension? No one knows exactly what causes IIH. Caregivers believe that it may be caused by an increased amount of cerebrospinal fluid (CSF) inside the skull. CSF is a clear fluid that is around the brain and spine. It is produced by the ventricles (spaces inside the brain) and then absorbed by blood vessels into the blood system. IIH may happen when too much CSF is made or too little is absorbed. A problem with the brain's structure, such as narrowing, is also considered a possible cause of IIH.

What are the signs and symptoms of idiopathic intracranial hypertension? You may have any of the following signs and symptoms:

• Eyesight problems: Blurring, loss of vision, or a blind spot in the field of vision. This may occur for a short period of time and may affect one or both eyes. You may also see double.
  
  
• Headache: A throbbing headache which may be more severe upon waking up or when lying down. The pain may be felt at the back of the eyes. Eye movements, changes in position from lying to standing, straining, and exertion may make the headache worse. Nausea (upset stomach), vomiting (throwing up), and eye pain when looking into bright lights may occur with headache. You may also have neck and back pain.
  
  
• Hearing problems: Pulsating (heartbeat-like), whooshing, or roaring in the ears. There may also be hearing loss.
  
  
• Psychosocial problems: You may feel nervous, frustrated, or depressed. You may have trouble focusing on a task or feel confused. The anxiety, depression, and physical symptoms cause problems in your daily activities, such as with family or work.
  
  
• Others:
  
  
  • Joint pain, including the shoulder, wrists, and knees.
    
    
  • Loss of coordination.
    
    
  • Loss of feeling or ability to move the muscles of the face.
    
    
  • Neck stiffness.
    
    
  • Numbing, prickling, tingling, or burning feeling of the skin.

How is idiopathic intracranial hypertension diagnosed? High pressure in the brain may be caused by different conditions. IIH can only be diagnosed once other possible causes of intracranial hypertension have been ruled out. Caregivers may want you to have different tests to do this. Certain tests use a special dye to help blood vessels show up better. Tell caregivers if you are allergic to iodine or shellfish (lobster, crab, or shrimp), as you may also be allergic to this dye. One or more of the following tests may be done:

• Blood tests: You may need blood taken for tests. The blood can be taken from a blood vessel in your hand, arm, or the bend in your elbow. It is tested to see how your body is doing. It can give your caregivers more information about your health condition. You may need to have blood drawn more than once.
  
  
• Computed tomography scan: This test is also called a CT scan. A special x-ray machine uses a computer to take pictures of your head. Before taking the pictures, you may be given dye through an IV in your vein.
  
  
• Eye tests: Your caregivers will do a complete eye exam. This is done to check if the high pressure in your brain is affecting your eyes. Your caregivers will also test how well you see things around you. You may have any of the following tests:
  
  
  • Angiography: This test uses a dye that is put in your eye and then a special camera will take pictures of the inside of your eye. The dye helps the blood vessels show up better in these pictures.
    
    
  • Indirect ophthalmoscopy: This test uses a magnifying lens to see your retina and other parts of your eye. Eyedrops are placed into your eyes to dilate (widen) the pupils. The pupil is the dark circle in the middle of the eye.
    
    
  • Slit-lamp test: This test uses a microscope with a strong light to look into your eyes.
    
    
  • Stereoscopic fundus photography: You may have this test to check your eye for swelling or to see if an eye problem is getting worse.
    
    
  • Visual acuity test: Your caregiver may ask you to read special eye charts. These charts help your caregiver check how well you see colors, lines, and at different distances.
  
  
• Lumbar puncture: This is a procedure where a needle is inserted in your back and into the spinal canal. During a lumbar puncture, CSF pressure will be measured. CSF may be collected and sent to a lab for tests. The tests check for changes in the CSF, including the presence of blood, protein, sugar, and germs.
  
  
• Magnetic resonance imaging: Using magnetic waves, this test, also called an MRI, takes pictures of your head. During the MRI, you may also have a test called magnetic resonance venography. You may be given a dye before the test is done. Magnetic resonance imaging and venography help caregivers see if a problem in your brain or its blood vessels is causing your condition.

How is idiopathic intracranial hypertension treated? Treatment of IIH aims to relieve the symptoms and prevent further problems caused by the high CSF pressure. If there are no symptoms and your vision is not affected, watchful waiting may be all that is needed. Sometimes, IIH goes away on its own, especially after weight loss. You may also need any of the following:

• Medicines: Medicine to decrease CSF production or amount may be given.
  
  
• Procedures: Lumbar punctures may be done to decrease the CSF pressure and ease headache. Surgery may be needed if treatment with medicines fails and the vision is at risk. A small opening may be made in the sheath (cover) around the optic nerve to relieve swelling. A shunt (passageway) may be made using tubes to drain the CSF into another area of the body.
  
  
• Lifestyle changes: Caregivers may tell you to lose weight if you are overweight. You may also need to switch to a low salt diet. Drinking moderate amounts of liquids may also help.

Where can I find more information? Having IIH may be life-changing for you and your family. Accepting that you have IIH may be hard. Talk to your caregivers, family, or friends about your feelings. You may also want to join a support group. Contact the following for more information:

• American Academy of Family Physicians
  PO Box 11210
  Shawnee Mission, KS 66207-1210
  Phone: 1-913-906-6000
  Web Address: http://www.aafp.org
  

• Intracranial Hypertension Research Foundation
  6517 Buena Vista Drive
  Vancouver, WA 98661
  Phone: 1-360-693-IHRF (4473)
  Web Address: www.ihrfoundation.org
  

CARE AGREEMENT:

You have the right to help plan your care. To help with this plan, you must learn about your health condition and how it may be treated. You can then discuss treatment options with your caregivers. Work with them to decide what care may be used to treat you. You always have the right to refuse treatment.

Copyright © 2008 Thomson Healthcare Inc. All rights reserved. Information is for End User's use only and may not be sold, redistributed or otherwise used for commercial purposes.

The above information is an educational aid only. It is not intended as medical advice for individual conditions or treatments. Talk to your doctor, nurse or pharmacist before following any medical regimen to see if it is safe and effective for you.

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