Living With IIH

What do people with IIH experience?

IIH affects people differently. Not everyone has all the symptoms that people report when they have IIH. The symptoms of IIH can have a significant impact on the quality of your life.

The commonest symptoms of IIH include:
  • Headaches
  • Visual obscuration
  • Pulsatile tinnitus
  • Back pain
  • Dizziness
  • Neck pain

Less common symptoms that are sometimes reported include:

  • Blurred vision
  • Memory problems
  • Nerve pain
  • Double vision

Headaches in IIH:

Headache is the most common symptom in patients with IIH. Although not everybody with IIH gets headache. The headache may happen every day or less often. Some IIH headaches improve after lumbar puncture (but migraine headaches can also improve after lumbar puncture). It may be worse in the morning, on bending and on coughing (but other headaches can have these too). The exact feeling of these headaches is not well described, and vary considerably between people.

If you have IIH you can get a number of different types of headaches (for example migraine or medication overuse). In the context of IIH your health care professional will consider with you what types of headaches you have and how best to treatment them. For further information on headaches see the IIHUK Headache in IIH leaflet.

Vision problems in IIH:

Visual obscurations is a short lived loss of vision, that returned to normal within seconds. The vision may "grey-out” or become dark. It can happen in one or both eyes. It can be triggered by bending down. Some people may experience double vision. Papilloedema (swelling of the optic nerves) can affect field vision which is it is important to get your eyes checked.

What is pulsatile tinnitus?

Tinnitus is a term for hearing sounds that come from inside your body, rather than from outside. Pulsatile tinnitus is the noise of your heart beat or pulse in one or both of your ears. For some they only hear this when things are quiet (for example in bed at night). For others it can be a disabling distracting noise they hear all the time which can affect their concentration, and can cause difficulty sleeping. There is no proven treatment for pulsatile tinnitus. For the majority as their IIH settles the pulsatile tinnitus disappears.

Are there any warning signs of IIH getting worse?

Increase in the frequency and severity of headaches, increase in visual obscurations and pulsatile tinnitus can all be signs that IIH is getting worse. This can be frightening. If this is happening it is important to see your doctor.

What is the long-term outlook?

In some people, after diagnosis, IIH can settle itself. For the majority weight loss and combined with medical treatment, will control the symptoms well. However, some people may continue to have disabling symptoms despite treatment.

Can I get pregnant if I have IIH?

If you are considering becoming pregnant, tell your doctor as some of the medicines used in IIH and headache can potentially harm the unborn baby.

I take the pill (oral contraceptive), what do I need to know?

There are many different types of pills for contraception. They have different amounts of hormones in them. More often they have no relationship to the development of IIH. If you are worried, speak to your doctor.

Some drugs used to control headaches in IIH can affect how well the oral contraceptive pill works, so you could be at risk of becoming pregnant. Tell your doctor if you take oral contraceptives.

I have a contraceptive injection or the contraceptive implant, what do I need to know?

These types of contraceptives use the hormone progestogen. There is no clear relationship between using these types of contraceptives to the development of IIH. If you are worried, speak to your doctor.

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