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Idiopathic Intracranial Hypertension Discharge Instructions


About this topic


Idiopathic intracranial hypertension is also called pseudotumor cerebri. It may be shortened to IIH. With this illness there is raised pressure around the brain. You may hear this called intracranial pressure or ICP. The raised pressure often gives you the same signs as if you have a brain tumor. Doctors do not know what causes this illness. Treatment may include drugs and surgery. ‚  

What care is needed at home?


  • Ask your doctor what you need to do when you go home. Make sure you ask questions if you do not understand what the doctor says. This way you will know what you need to do.
  • Talk to your doctor if you take drugs to control your hormones. Some of these drugs can cause IIH.
  • Ice may help if you have a very bad headache. Place an ice pack or a bag of frozen peas wrapped in a towel over your head. Never put ice right on the skin. Do not leave the ice on more than 10 to 15 minutes at a time.
  • Your doctor may have you limit your fluids at home.

What follow-up care is needed?


  • Your doctor may ask you to make visits to the office to check on your progress. Be sure to keep these visits.
  • Your doctor may send you to an eye specialist.
  • Your doctor may send you to a dietitian if you are overweight.

What drugs may be needed?


The doctor may order drugs to: ‚  
  • Lower pressure around the brain
  • Help with pain and swelling
  • Get rid of extra fluids

Will physical activity be limited?


You may have to limit your activity. Talk to your doctor about the right amount of activity for you. ‚  

What changes to diet are needed?


Ask your doctor if you need to be on a special diet. You may be instructed to reduce the salt in your diet. ‚  

What problems could happen?


  • Eyesight problems
  • Blindness

What can be done to prevent this health problem?


  • Avoid taking over-the-counter (OTC) drugs that may raise pressure inside the skull. Ask your doctor before taking drugs.
  • Avoid activities that can cause head injuries. Wear helmets when riding a motorcycle or bikes or when doing sports.
  • Lose weight if you are overweight.

When do I need to call the doctor?


  • Problems with walking or balance
  • Sudden change in your eyesight
  • Sudden or very bad headache
  • Passing out with headache
  • Drowsy or confused
  • Upset stomach and throwing up
  • You are not feeling better in 2 to 3 days or you are feeling worse

Helpful tips


  • Avoid headaches caused by IIH by avoiding stressful events. Learn how to cope with stress and difficult situations. Try to relax.
  • When traveling, you should always carry your latest CT scan with you.

Teach Back: Helping You Understand


The Teach Back Method helps you understand the information we are giving you. The idea is simple. After talking with the staff, tell them in your own words what you were just told. This helps to make sure the staff has covered each thing clearly. It also helps to explain things that may have been a bit confusing. Before going home, make sure you are able to do these: ‚  
  • I can tell you about my condition.
  • I can tell you ways to help ease the pain of a very bad headache.
  • I can tell you what I will do if I have problems with walking or balance, a headache, or a change in eyesight.

Where can I learn more?


Intracranial Hypertension Research Foundation ‚  
http://www.ihrfoundation.org/ ‚  
National Institute of Neurological Disorders and Stroke ‚  
http://www.ninds.nih.gov/disorders/pseudotumorcerebri/pseudotumorcerebri.htm ‚  
National Organization of Rare Disorders ‚  
http://www.rarediseases.org/rare-disease-information/rare-diseases/byID/640/viewAbstract ‚  

Consumer Information Use and Disclaimer


This information is not specific medical advice and does not replace information you receive from your health care provider. This is only a brief summary of general information. It does NOT include all information about conditions, illnesses, injuries, tests, procedures, treatments, therapies, discharge instructions or life-style choices that may apply to you. You must talk with your health care provider for complete information about your health and treatment options. This information should not be used to decide whether or not to accept your health care providers advice, instructions or recommendations. Only your health care provider has the knowledge and training to provide advice that is right for you. ‚  

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