10 Myths About IH
1.You must have a headache if you have intracranial hypertension.
FALSE. While severe headache is often the hallmark and the most common presenting symptom of intracranial hypertension, it doesn’t have to be. There are documented IH cases in which headache never occurs. In its absence, other symptoms including visual changes, papilledema (swollen optic nerves), pulsatile tinnitus, and neck and back pain can point to raised intracranial pressure.
2. Patients with secondary intracranial hypertension are often overweight.
FALSE. Secondary intracranial hypertension means that something–trauma, an underlying disease or malady, an adverse drug reaction–has triggered the intracranial hypertension. In these cases, weight is not a factor.
However, the relationship between weight and idiopathic intracranial hypertension is one that needs to be explored. Weight is considered a factor for young, overweight women diagnosed with spontaneously-evolving, idiopathic IH (IIH). It is worth noting that approximately two-thirds of the U.S. population is now deemed overweight, but only a fraction will develop idiopathic IH. So, clearly, other factors beyond weight are an issue in cases of idiopathic IH.
3. If you don’t have papilledema, then your intracranial pressure is normal.
FALSE. You can have intracranial hypertension without papilledema. Just as some people don’t develop headache, some never develop papilledema. Additionally, a patient’s papilledema can resolve but he or she may still experience headache, tinnitus or other symptoms of IH.
4. All vision loss is permanent.
FALSE. Every patient is different. Vision loss is not necessarily permanent. As annoying as those visual fields are, they really are important because early vision loss is not always noticed by the patient. The general rule is the sooner any loss is detected, the better.
5. It’s your own fault.
FALSE. No one wants to be sick. It’s hard enough to deal with the debilitating effects of this illness, worse when you feel it’s your own fault. No one knows why intracranial hypertension happens. Is it genetic? Are there environmental triggers? Are some people more likely than others to get it? These questions need answers. Rather than dwell on any one aspect of this disorder, we need to understand exactly what goes wrong in the first place. Only then can we work on finding a solution.
6. IH is on the decrease.
FALSE. IH is on the increase.
7. IH always goes away.
FALSE. Both forms of intracranial hypertension can be chronic, with long-term physical, financial and emotional effects. In some idiopathic cases, weight loss can bring about a remission and therefore should be encouraged. But in other idiopathic cases, weight reduction does not make a difference.
8. If you have IH, then every time you have a spinal tap, the opening pressure will be high.
FALSE. It’s quite possible to have a normal or even low opening pressure and still have intracranial hypertension.There are a variety of factors that influence opening pressure. First, it’s believed that spinal fluid pressure normally fluctuates, which may explain why sometimes an individual can suffer with a severe headache, feel suddenly better, then feel worse again. Duration between spinal taps, a cerebrospinal fluid leak from an earlier spinal tap, the body’s position and medication can all affect opening pressure.
9. You won’t lose vision if you have intracranial hypertension without papilledema.
FALSE. High intracranial pressure can still damage the optic nerves, without the telltale sign of papilledema–the swollen optic nerve disc at the back of the eye. While this happens less frequently, it again underscores the importance of visual field tests to monitor any vision loss. Ultrasound and MRI scans can also be used to measure physical changes of the optic nerves.
10. Pseudotumor cerebri is an accurate name for idiopathic intracranial hypertension.
FALSE. Pseudotumor cerebri was first used in 1893 to describe a group of symptoms that mimicked those caused by a brain tumor. The symptoms–blindness,unmitigated headache, neurological deficits–were documented. But the term was a designation of convenience. Unfortunately, through the years, pseudotumor cerebri has become a victim of its own name. Too often it is regarded as something less severe than it is, in large part because of its name.
Idiopathic intracranial hypertension is the term of choice among researchers today. It is considered the most accurate description of the disorder.