Welcome to the IH Project


Chronic IH patients can suffer from many life-altering symptoms. One mystery of this disorder is that not all people experience the same symptoms. This is a reason why Chronic IH is commonly misdiagnosed.

Headache is the most frequently reported symptom of Intracranial Hypertension. IH headaches are very painful and can become unbearable. The headache caused by IH is due to the extreme amount of pressure that the brain is put under by excessive CSF (the fluid surrounding the brain and spinal cord). Some IH Patients get a headache behind their eyes, while others experience them at the top, back, or sides of their head.  IH headaches typically are not relieved by migraine or over the counter pain medication. These headaches can be worsened by exercise, light, coughing, and is commonly accompanied by a whooshing noise in the ear(s) that Is in synch with the patients pulse (pulse-synchronous tinnitus). Many people with IH suffer from these headaches daily.

The second most common symptom of IH is visual symptoms. High Intracranial Pressure can result in Papilledema (swelling of the optic nerves) which can lead to vision loss, and sometimes even blindness.  Some experience TVO’s (Transient Visual Obscurations) which are described as seeing grey spots or experiencing a short period of dimming or blacking out. Blurred and Double vision are also common in the visual changes of an IH patient. Many IH patients are in jeopardy of losing their vision. If one’s intracranial pressure is raised for an extended period of time, the risk is even higher.

Another classic symptom of IH is Pulse-synchronous tinnitus. This is described as a noise in one or both ears that is in synch with the pulse. The sound can be described as a whooshing, whistling, humming, or marching noise. This type of tinnitus is caused by the high intracranial pressure compressing blood vessels. Pulse-synchronous tinnitus can appear with or without other symptoms. Sometimes, this tinnitus can be a presenting symptom of IH and is part of the diagnostic criteria. Pulse-synchronous tinnitus is not associated with hearing loss, however it can affect ones daily life.

Other symptoms of IH include: pain in the arms, legs, and back, severe neck stiffness, dizziness, lightheadedness, balance problems, numbness/tingling in hands, feet, and face, nausea/vomiting, Rhinorrhea (spinal fluid leakage from the nose), endocrine problems, Malaise/fatigue, depression, memory difficulties, and exercise intolerance.

information credit goes to IHRfoundation.com